CAREGIVERS

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A study of 13,000 people by the University of Wisconsin in 1987 and 1988 noted the following. About 15% of women and 10% of men between the ages of 19 to 34 had cared for a chronically ill or disabled relative or friend. Between 35 to 49, the averages increased to 1 in 5 for women and 1 in 7 for men. For ages over 50, the average was 1:5 for both sexes. Only 1:14 overall was providing in house care and it usually was for a spouse or child. 1:10 gave out of house care- usually to aged parents. The heaviest burden was on middle aged women- about 15% between the ages of 35 and 64 care for a parent or other person living outside their home.

In 1989, nearly 80% of all caregivers providing assistance with daily living were women and nearly 1/3 had daily jobs in addition to their caregiving. Almost 65% who had jobs reported a conflict with their caregiving and their jobs such as being late to work, losing hours or income or giving up vacation time to provide care. Thirty percent of all working adults who were also caregivers said that providing care hurt their job performance (Galllup study 1992). Yet only 40% of those had ever heard of long term care. Women in particular must be made aware of the stress and pressure that will take a toll upon them- and the fact that they may need care as well.

CARE: (For Better or Worse) Caregivers have a difficult time taking care of a loved one and trying to retain some semblance of normalcy in their work. The following items were noted

1. Look out for yourself. Caregivers often assume so much responsibility that they cease having a life of their own

2. Let your spouse know you have needs, too. The sick person feels that he or she is the only one in need.

3. Know where to draw the line. Illness can increase dependence to a degree you never envisioned when you took your marriage vows.

4. Don't be afraid to make time to be alone. you may simply have to have time away in order to gain perspective

5. Maintain outside interests. Your social life, which should be the last thing to go, is unfortunately the first.

6. Stay fit even though you may feel there is no reason to put any effort into looking good when the physical part of your marriage is waning or gone.

7. Once you know your spouse is being cared for by the hospital staff, give yourself permission to leave.

HOME HEALTH CARE: (The Home Health Care Solution, Zhun Nassif, Harper and Row, 1985)

1. Is the company a legitimate home care agency or is it instead a nursing registry or employment agency?

2.Does the agency provide professional references?

3. Does the agency limit eligibility for service in any way? Some may have a geographical area, require insurance, certain income, etc.

4. Is the agency accredited, Medicare certified or licensed? You may not need Medicare certified in order to get good care, but your insurance company may require.

5. What is the background of the agency's top management personnel? While nursing care is maybe what you need, the agency needs competent help in management- not the same thing, obviously. If you end up spending most of your time calling about miscellaneous problems, like proper billing, answering the phone, you don't need the extra aggravation.

6. Is the agency insured against problems? Does the agency have adequate liability and malpractice insurance.

7. What services does the agency offer? Not all agencies provide medical equipment and supplies and not all home health care personnel prepare meals.

8. When are the agency's services available? Ms. Nassif's says she would not recommend entrusting care to any agency that cannot accommodate a general request within three business days.

HOME HEALTH CARE SERVICES: From the same book:

1. Does the agency conduct an in home assessment prior to developing your spouse's care plan and rendering service? Considering the stress of a caregiver, it is absolutely necessary that an independent firm come in a develop a plan of care

2. Will the agency consult your doctor or other professionals before developing a plan?

3. Does the agency assess your spouse's ability to perform the normal activities of daily living? You want the agency to render aid as necessary but not to make the patient even more dependent.

4. Does the agency consider your home environment?, Financial situation?, Available social support?

5. Will you receive a written, detailed plan after assessment? How Flexible is it? I can say from all the work I have done with various entities and individuals, GET IT IN WRITING!!!!! Never allow anything important to happen without written confirmation of what is going to happen and why.

A point made by Ms. Kievman is that you should also ask's about the agency supervision policies. Ask who provides the supervision and when that person is available. "If you need the services of a nurse, home health aide, or therapist, an in home supervisory visit by a registered nurse at least every two weeks is required".

CAREGIVERS: Many people have lots of concerns about hiring someone to come into their home to take care of a loved one. Are they reputable? Will they treat my spouse (mother, father, child) with care? Well, one type of employee that might be available in your community is a senior citizen. They may need the money, like to work, and are certainly considered, for the most part, more reputable and giving than many younger people. Call your senior citizen's center to see if they can help.

CAREGIVERS: (Ethics on Call) "When someone goes into a home instead of an institution, it is usually presumed that a family member will be primarily responsible for the person, or will serve as a secondary support to the paid care provider. Statistically, the great likelihood is that person will be female, and equally likely, will receive no compensation for what can be virtually a full time job. As all who have done it know, this work can require an extraordinary commitment of time and energy. Eighty percent of these unpaid caregivers devote and average of four hours each and every day, seven days a week, to caring for their elderly charges."

LONG TERM CARE: 10/95 The US General Accounting Office recently calculated that more than 12 million Americans require some long term care. National surveys show that as many as 6 out of every 10 Americans have family members or friends requiring long term care services. Eight out of ten would choose to provide care for their family members at home. But it is emotionally and financially draining effort- most of it on women. The average woman can expect to spend 17 years caring for a child and 18 years caring for a parent. However the budget deficit crisis could mean that as Medicaid is cut, as many as 300,000 Americans will lose their long term care next year and as many as 1.7 million could be denied access to long term care by the year 2000.

LONG TERM CARE 1996: A caregiver and author had this to say when she had to put her father in a nursing home. "Neither my training and knowledge nor my father's acceptance of fate could hold back the tidal wave of emotions that engulfed me. The guilt, sadness and helplessness that I so deftly helped others work through were now mine." She also noted in an article in Answers that "the decision by an adult child to place a mother or father in a nursing home is an infinitely painful one. Psychologists postulate that the emotional aftermath is far more devastating than the grief reaction experienced by the adult child after a parent's death".

It is for these and similar reasons that I think long term care policies are worthwhile. Yes, they may be somewhat debatable in terms of pure finances, but the reduction of emotional strain at one of the most difficult times of life cannot be expressed in dollars along. $500 to $2,000 a year to alleviate both tremendous emotional and financial burdens is, quite probably, one of the best policies available.

HOME HEALTH CARE: (Hidden Shame: The Shocking Story of America's Elderly Ill) ) This 1990 book describes some of the terrible conditions that can happen to the elderly due to neglect, thoughtlessness, stubbornness or just ignorance. The authors are home care givers and have stated specifically that home care is what the elderly desire at all times. Absolutely true, since almost all elderly would like to receive care in the comfortable and known surroundings of their home. However, that is many times not financially feasible unless one has a lot of money. Long term home health care is far more expensive than that in a nursing home or other similar facility.

A major point in their commentary is the repeated tendency of those responsible in determining who should care for a patient in choosing the least expensive alternative- primarily live in or part time sit in home helpers that do little or nothing and have little or no training. The end result is ineffective, substandard care bordering at times on gross negligence. They had some pointed observations on abuse.

"Many things constitute abuse- direct physical harm; lack of food; lack of medical care; overmedication, sexual exploitation; neglect; verbal threats; creation of fear; isolation; withholding of emotional support; theft; fraud; misuse of funds or property; extortion; duress; coercion; locking someone up; forced removal from home or forced entry in the home; denial of food, clothing shelter or health care."

Symptoms may vary from the obvious as cuts, bruises or welts that appear with regulatory, often old and new at the same time, poor hygiene, absent patches of hair, burns, soiled clothing or bedding, hidden injuries or bruises, unusual and regular use of the emergency room of the hospital and improper level of in home care or supervision. Evidence of psychological problems include depression, unusual deference passivity, fearfulness, hopelessness, reluctance to talk freely, denial, agitation, trembling, confusion and distortion, habit disorders and lack of responsiveness.

Financial abuse might be unusual activity in bank accounts or with credit cards, recent acquaintances expressing unusual attention for the elderly wealthy, unusual interest by a caregiver in the patient's financial affairs, the caregiver has no obvious means of support, the caregiver tries to isolate the person from friends and family, thereby generating over reliance on the caregiver. Rights violations include the person being locked in a home or room, interception of visitors and or mail, elimination of a phone, and a person being forced to do things against her/his will.

The abuse may be unintentional at times- due to ignorance and fear- but in no way diminishes the pain and suffering on the patient. The authors clearly show that such abuse is not uncommon.

COMMUNICATION: Behind all the commentary above is the fact that one issue that could relieve many of the problems is simple communications. Beyond anything else, the willingness to discuss the many problems of an elderly person can help make the difference between the right decision or procrastination and a bad decision brought on by guilt, ignorance, anxiety, etc. As the authors stated, "younger members of a family must overcome guilt and anxiety and act when older people no longer recognize their own ability to care for themselves. But how to we deal with situations like this? How can we handle anxiety, frustration, anger, revulsion, rejection and guilt? The first and most important consideration is the person's well being. If you keep in mind the clear question of whether you're acting in the best interest of the individual, you will overcome some of the emotional blocks you are experiencing. If you sincerely believe your decision meets this test, you anxiety level will be substantially reduced."

CAREGIVERS: (Gail Sheehy 1996) As Americans who are reasonably healthy and have some assets, we may rarely see the number of people who fall through the cracks. (Do you know that 10% of American adults are severely disabled. Do you ever see them?) Many are the older women who have accepted the role of caregivers for others and, unfortunately, leave themselves open to financial and emotional turmoil, Sheehy notes that there are a number of women of the "margins of our society who had to quit their jobs and give up health insurance and pension coverage to nurse parents or husbands or in laws through the long twilight of chronic illness" or through their illness of breast cancer. "22% of family caregivers quit paying jobs and give up annual earnings of $29,400 per year in order to spend upwards of 18 hours per day serving as home nurses for no pay." And if they are able to rejoin the ranks, older women run into the prejudice of age and may have to settle for low income, no benefit jobs.

There are two issues which I dwell on repeatedly. The first is that many people could afford long term care that would help immeasurably. The second is that women need to focus a lot more on themselves. Of course, that is a lot easier said than done.

DISABLED: (Gail Sheehy 1996) As stated, women are the caregivers of our society and will many times subvert their own identity in the caring for someone else. When the patient subsequently dies, she may be left with a void that may be hard to fill. As an older woman, without skills, afraid of what to do and what is next, they can lie listless until they also fade away. But the studies also have showed the resiliency of the human spirit in continuing onward. The whole issue was simply in forging ahead and trying. Many of these women took classes- even at age 60 or more- getting a job- anything to start- and then working their way upwards from there. And absent depression- which can mess up anything- just TRY. There are very few lives that are just "peachy" so you have to make what you can out of it.

CAREGIVERS: (WSJ, 1997) The National Council on Aging reviewed 200 caregivers with parents who lived more than one hour from work. Children spent 35 hours per month on average providing care and services. They were 50% male, 70% employed and 46 average age.

CAREGIVER TIPS: (Family Caregiver Alliance 1997)

1. Try to understand the limitations of the disease and just how well the person is able to communicate with and to you- the major problems being senile dementia and Alzheimers. Try to accept what the person has become, certainly not an easy task.

2. Reassure the ill person as much as possible through touching, soothing tone of voice and manners, simple words and gestures. They may not know who you are, but the kindness should show through. Also remember that every so often the brain "clouds" do clear and they need to know you still care.

3. Probably on the major reasons for adult abuse is that the family member loses control through the simple frustration of having to deal with the problems hour after hour, day after day. The best thing to try and do is to recognize that you are not in this alone. Contact your Area Agency on Aging for assistance. Use other family members and friends where possible to give you a break from the monotony. They can help you stay in control.

4. Don't try to always to correct the person when they are confused. If they think there in Scotland 20 years ago, you might ask them "what's it like, who are your friends, etc." It probably won't do any good to try to correct them anyway and perhaps you can establish a dialogue and further communication. Again, it comes back to accepting what the person has become and working within those confines.

CAREGIVERS: (1997) Here are some statistics from the California Caregiver Resource Centers Assessment database, 1990- 1992

1. The typical caregiver is a 59 year old woman with a household income of $20,000 to $25,000 (1992 dollars). She has been caring for her husband with Alzheimers for five years.

2. 51% of the caregivers are women and 36% are adult children. The largest groups are wives (37%), adult daughters (29%), h

Husbands (14%) sons, (6%), parents (5%) siblings (3%) and others (6%).

3. 47% of caregivers under the age of 65 also work outside the home. 18% under age 65 had to quit their jobs in order to provide care. Another 18% had to reduce the number of hours worked.

4. Caregivers provide an average of 93 hours of care per week

5. 27% said they get NO help from friends or family.

6. 66% of the caregivers in the survey showed signs of depression

WHO DO THEY CARE FOR?: (1997) The caregivers typical brain impaired "patient"

1. Male, 71 years old, married and suffering from Alzheimers for five years

2. More of the brain impaired adults under care are male (54%) than females (46%).

3. 78% are 65 years and older and at least half (51%) are 75 years of age.

4. Alzheimers is the most common affliction (38%) followed by stroke (23%), non specific dementia (11%), Parkinson's disease (8%) and traumatic brain injury (8%).

CAREGIVERS: (WSJ 1997) The National Council on Aging reviewed 200 caregivers with parents who lived more than one hour from work. Children spent 35 hours per month on average providing care and services. They were 50% male, 70% employed and 46 average age.

CAREGIVERS(1997) : (AARP) A National Alliance for Caregiving survey stated that at least one individual in 20% of American households is a caregiver. One adult in nearly 25% of American households has been involved in unpaid caregiving for someone over age 50 within the last year. Three out of four caregivers is a woman.

Caregivers set out about 18 hours per week for caregiving. One in five provides 40 hours of care.

More than 3/4 of caregivers provide transportation, grocery shop and do household chores; half prepare meals and a third give medications.

Half of the caregivers hold down full paying jobs- 1 in 8 works part time.

ANTICIPATORY GRIEF: (1998) Probably a new definition for many of you, but for caregivers- they have known about it for a long time. It is the grieving a caregiver acknowledges well before their loved one dies or "deteriorates beyond comprehensibility". There are several ways it is done per the Brookdale Center.

First, squarely face the fact that your loved one is suffering from a progressively degenerative disease and it is irreversible.

Second, that cures for such disease are very rare

Third, by recognizing that such person will lose most of the faculties- sympathy, humor, and finally their entire personality.

Fourth, by sharing your grief openly in support groups (most important- do not stay alone and become a martyr)

Fifth-and they point out most difficult- is the fact that this is truly a degenerative disease and the person will subsequently die regardless of the care given. This would hopefully forestall denial.

Therefore by the time the end comes, most of the sorrow and pain would have been exhausted and the time of healing a little shorter.

So, do caregivers pay attention and help themselves? Unfortunately, no. A survey in the late 80's noted that 75% of caregivers at home with a demented person took care of the loved one for seven days a week without a break. Only 9.7% of such caregivers seek help from the many service organizations available to them. They MUST call their local Area Agency on Aging.. But martyrdom does prevail with many stating that they- and only they- can properly look after the loved one- "even though their efforts may be carried out in an atmosphere of resentment, martyrdom and exhaustion. This is clearly a biased and self defeating appraisal."

MORE CAREGIVING: (Alzheimer's Association) (1998) "Half (49 percent) of family caregivers agreed that their caregiver duties cause stress within their immediate families, and 48 percent feel they do not have enough time for themselves. Most caregivers have been caring for their loved ones for an average of four years and more than one third (34 percent) fear they may not be able to care for them much longer. These family and personal stresses worsen as the loved one's condition becomes more severe. Caregivers of those with moderate to severe Alzheimer's disease were more likely than caregivers of those with mild Alzheimer's to describe their duties as 'frustrating' (90 percent), 'draining' (87 percent) and 'painful' (87 percent)."

CAREGIVERS: (When your Loved One has Alzheimers 1998) A late 1980's study showed that 3/4 of all persons that provided at home custodial care do so for seven days per week without a break. Yet only 9.7% ever sought help from the various community services- for example, the Area Agency on Aging. "...the sick person's welfare depends exclusively on their own sweat and toil- even though these efforts may be carried out in an atmosphere of resentment, martyrdom and exhaustion. This is clearly a biased and self defeating appraisal".

This critical commentary is an effort to get the caregivers- usually women and in their later 50's and older- to utilize the many services the community offers. Services that can provide even better care:

"Good home care personnel are highly experienced in the art of nurturing demented patients and are aware of the therapeutic tricks and shortcuts that only people who have nursed the feeble elderly person can really know about."

Probably one of the best care techniques is consistency. "Predictable routine is extremely satisfying for the patient".

And another issue the book comments upon is that while the caregiver has to adapt, it is not necessary to reinvent the wheel. For example

Adapt the home for the patient- don't change it entirely

Simplify the home- don't strip it bare

Modify the environment to the person's particular need- and no more

Balance your own needs against the patient- and strike a happy medium between the two.

As with other recommendations regarding demented patients, the more visual you can make your requests, the easier it may be for the person to grasp what is wanted. For example, put pictures of dresses, socks, pants, etc. on the appropriate drawers since they tend to forget where things are.

And while we have all heard about the use of grab bars, the author notes that they should be painted separate and distinct colors so they stand out vividly to the patient. Use liquid soap instead of bar soap. Fasten loose rugs with double sided tape. Some patients can't tell the difference between hot and cold and can get scalded in the bath. So the suggestion is to lower your water heater temperature if this should become a problem. They also suggest the use of hand held shower heads. In the kitchen, use tamper proof oven knobs- even tamper proof water faucets. And this is quite unique- since demented patients have problems using kitchen utensils, take a 12" x 12" wooden board and nail two wooden dowels on one surface to form a right angle. It then serves as a caddy to hold objects in place- buttering toast, packages to be unwrapped, bowls to be stirred an more. Using double sided suction cups helps keep bottles and such in place.

Demented people lose track of where they are going. So paint arrows on the walls by the stairs to show them at least the are going somewhere. Place reflective tape on objects that the are continually running into. Again, notice the use of visuals.

And while you may think that the patient has lost all concept of neatness and hygiene, do try to make them look as presentable as possible. It will not only probably help their self esteem when they might be lucid, but it will unquestionably help YOUR attitude towards them since you may think of them as their "old selves". Let them dress themselves whenever possible. However, lay out all the clothes for them. Don't put them in a position of having to make a choice- that can trigger a frustration response. Make the decisions for them.

If the patient is incontinent, let them wear sneakers- they can be washed easily.

Some patients may appear to become finicky eaters- but that may be more because they no longer know how to use a fork and knife or it is simply too difficult. They suggest using finger food when possible. Another interesting comment is that a demented person may feel infantilized if their food is cut up at the table. Better to have it cut up before it is served to them. They suggest that if they person is not eating like the rest of the family, take some food and eat it yourself while looking directly at them. Demented patients tend to mimic others and apparently this trick works wonders into getting them to eat. And for some strange reason, caregivers say that demented patients like bananas and banana tasting foods.

And, of course, we come to areas that are far less than appealing- toileting. This cause embarrassment for all and apparently is one item that the demented patient is apt to remember as private. But how to help them- and yourself as the caregiver? Here were a few tips

Keep a record of every time the person goes to the bathroom. Look for patterns

Then encourage them to urinate or defecate ONLY at those times. It may be difficult at first, but the regimen usually takes hold after a while and can save untold indignities (for all) later.

Even when they may need to go, they may need visual or audio stimulation so they know what they are to do. You may need to point out which is the toilet since the other white articles in the bathroom (sink, trash receptacle) may confuse them. Flush the toilet several times. And as with the other visual displays, it might be a good idea to place a picture of a toilet outside the bathroom so they know that this is the right room.

Bathing- baths are considered safer than showers. Brookdale professionals noted that demented person tend to be frightened by showers where they perceive the violent downcoming streams of water as a threatening bombardment. Do not fill the tub more than 1/3 full. And never leave a demented person alone in the tub.

Communications- always try to pick a quiet and simple environment since demented person are easily distracted and confused. (That's also the reason you may take patients to the early bird dinners. There are fewer people to cause difficulty in hearing or other distractions.) So,

Get the persons attention before speaking, Perhaps touch them, but be aware that some demented patients do not like to be touched, You may simply have to speak louder.

Establish eye contact and MAINTAIN it throughout the conversation.

Speak slowly and repeat as necessary. Give them enough time to respond.

Don't embellish the phrasing. Keep words simple. Address only one subject at a time. But don't use baby talk. That is demeaning, particularly to patients in the early stages of dementia

Treat the replies with empathy and compassion. Getting mad and loud will accomplish little. They will relate to a friendly and warm voice and disposition.

Learn the limits of their attention span and do not exceed. It will only confuse them

Like a teacher, tell them what you are going to tell them, then tell them, then (as necessary) tell them what you told them. That is how you get people to grasp what you wish to convey.

CAREGIVERS: (Alzheimer's Disease Survey, Alzheimer's Association 1998) About 49% of family caregivers said that their caregiver duties cause stress within their immediate families and 48% said felt they did not have enough time for themselves.

Most caregivers have been caring for their loved ones for an average of four years and about 34% felt that they might not be able to do it much longer. The stresses obviously worsen as the patient's conditions becomes more severe. Caregivers treating loved ones with moderate to severe Alzheimer's disease were more likely than caregivers of those with mild Alzheimer's to describe their duties as 'frustrating' (90 percent), 'draining' (87 percent) and 'painful' (87 percent)."

THE OTHER PERSON IS NOT ALWAYS TO BLAME: (1998) Many people who act as long time caregivers tend to get isolated from reality. But so do some of their friends and relatives. They might be (usually are) quite uncomfortable, embarrassed, intimidated, etc. by the condition of your loved one and not really know what to say. When Your Loved One Has Alzheimers says that they may "smile understandingly and tell you how beautifully you are coping and ask if there is anything at they can do to help. But inside they are confused and- dare they think it?- repelled to, and a little frightened. They wonder if you would rather not be alone. You have so many thing on your mind these days. Perhaps you'd prefer not to be bothered- after all- you have not called them in a while either. Perhaps it is better this way- at least until the patients improves a little.

And so the friendship fades."

CAREGIVERS: (1998) As identified many many times, caregivers must focus on themselves as well as their patients since both can end up in misery. Per When Your Loved One Has Alzheimers "once you shoulder the obligation of nursing a demented person, many doors will close to you and remain close for the duration of your caregiving stint. The decision to remain at home with the sick person is your own. Thus caregivers tend to become isolated. Some devote themselves so entirely to taking care of their homebound invalids that eventually they become homebound too. And that means trouble.

As a rule therefore, caregivers almost invariably need to reach out more, to make an effort to call old friends, to summon up that last drop of energy to go to a movie or ball game or a restaurant. Caregivers who feel listless a good deal of the time or vaguely anxious or just plain dead inside should bear in mind that lack of human input over long periods of time can have serious psychological consequences."

The Brookdale Center of Aging- the methods noted in the book- suggest the following to help caregivers keep a lifeline to the world.

1. Take turns- Ask/allow friends or family to help with the caregiving

2. Get out of the house as much as you can. Staying inside four walls is the "stuff breakdowns are made of".

3. Use the phone. Call friends, family business associates and others to keep relationships going.

4. Keep busy with other interests. These "refresh both your heart and mind".

5. Exercise. I have mentioned this repeatedly over the years. Exercise provides energy for all life's activities. 6. Eat well. We all know that once under stress, we start to eat badly. But that will only make you feel worse.

7. Take quality time out. You need a vacation every so often. That's why all the major long term care policies have a respite care option.

8. Seek out pleasant perks and strokes. Maybe it's a good dinner, massage, dress

9. Keep a sense of humor. Besides what may be obvious, humor has been shown to be helpful in the healing process by increasing endorphins in the brain.

NATIONAL CAREGIVERS SURVEY: (1998) The National Alliance for Caregiving, AARP and Glaxo Welcome found that nearly one in four households in United States is involved in caregiving. The average time spent in caregiving each week is 18 hours and almost half of caregivers devote eight hours weekly to the duties of caregiving. Intense caregiving is going on in a quarter of the 22.4 million households with 4.1 million households providing at least 40 hours per week of unpaid, informal family assistance to an older relative-usually a woman caring for mother- and another 1.6 million households providing 20-40 hours weekly.

Caregivers are spending out-of-pocket about $2 billion per month for groceries, medicine and other cash supports related to caregiving.

More than 40% of caregivers for older family members are also caring for children or youth under the age 18;

almost 66% of caregivers are employed part-time. About half of those in the research study said that caregiving responsibilities result in their arriving at work late, leaving early or taking time off during work days.

NATIONAL CAREGIVERS SURVEY: The National Alliance for Caregiving, AARP and Glaxo Welcome found that nearly one in four households in United States is involved in caregiving. The average time spent in caregiving each week is 18 hours and almost half of caregivers devote eight hours weekly to the duties of caregiving. Intense caregiving is going on in a quarter of the 22.4 million households with 4.1 million households providing at least 40 hours per week of unpaid, informal family assistance to an older relative-usually a woman caring for mother- and another 1.6 million households providing 20-40 hours weekly.

Caregivers are spending out-of-pocket about $2 billion per month for groceries, medicine and other cash supports related to caregiving.

More than 40% of caregivers for older family members are also caring for children or youth under the age 18;

almost 66% of caregivers are employed part-time. About half of those in the research study said that caregiving responsibilities result in their arriving at work late, leaving early or taking time off during work days.

CAREGIVERS: 1998 Readers will note an extended focus on long term care that addresses not only the financial issue but, more importantly in many cases, the emotional burden placed on caregivers- mostly women. A new study noted that the burden is greater on daughters than on wives. Researchers found that heart rates and blood pressure of daughters jumped dramatically during social interactions with the ailing loved one. The reasons are not clear but an expert indicated that a wife makes a commitment to her husband but that the commitment to a parent "is much less specific, and daughters may resent their caregiver role."

CAREGIVING: (1999) 20: (National Family Caregiver Association Survey 1995) Employers note these statistics about employee caregivers:

1. 60% of employees are late, leave early or take lunch lunchers regularly

2. 9% decline promotions and business trips; 12% decline special projects

3. 11% take leaves of absence; between 5% and 17% change jobs or reduce hours

4. 50% talk regularly with co workers about providing care

5. Employee caregivers cost their companies about $3,500 a year in lost productivity.

CHILD AND PARENT CARE: (1999) (Aragon Consulting) By 2005, 37% of U.S. workers will face more concern in caring for a parent than caring for a child. The study showed that child care needs by a parent will increase from 65% to 85% in the next five years. But the same parents are expecting to face additional challenges in taking care of THEIR own parents from about 58% now up to 95% five years from now. The bulk of that care will be from a distance and will cause far more frustration and guilt  than having to care for a loved one close by - and that is bad enough. Employers need to help employees with this issue through changes in benefits- if for no other reason than it will cost an employer thousands to millions of dollars through lower moral, increased sick days and a decrease in productivity. However, in viewing the attempts by some of these programs, human resources is not up to the task of correctly explaining the difficulties to be faced nor how to cope simply because they do not have the background in Medicare and Medicaid planning nor an understanding of longterm care or the associated products. They have to do a lot more homework.

CAREGIVING: (1999) A study in Health Affairs finds that the market value of informal care provided to sick or dependent adults by family and friends was nearly $200 billion in 1997, dwarfing the $83 billion spent on nursing home care and $32 billion spent on formal home care.

CAREGIVERS: (National Partnership for Women and Families 1999): two-thirds of women ages 40 to 59 said it was likely they would be responsible for the care of an elderly parent or other relative in the next 10 years.

CAREGIVING: (1999) A study in Health Affairs finds that the market value of informal care provided to sick or dependent adults by family and friends was nearly $200 billion in 1997, dwarfing the $83 billion spent on nursing home care and $32 billion spent on formal home care.

CAREGIVERS: (2000) Researchers indicate that 25.8 million Americans spend an average of 18 hours per week caring for an ailing relative. At a "wage" of $8.18, that would have cost the health care system an additional $196 billion annually. Total spending for nursing home care costs $83 billion per year and for formal home health care at $32 billion.

CAREGIVING: (2000) "Caregiving often hits people unprepared to negotiate the raw emotion that underlie our emotions, our relationships and our spiritual beliefs. When those unfamiliar feeling surface, we are unprotected by the what we have been conditioned to expect, unaware of the anchor that lies within. When illness, death and loss fund us, we discover some shocking truths: we have not made authentic connections with others, including family, we don't know ourselves very well, and we do not feel empowered by the institutions in which we have put our trust."

I concur- until you have been rocked to your core, you have little idea what you may be like.

Also, "...caregivers are on a path seemingly without end, subjected to the stressed and the guilts of watching another's pain without being able to erase it, of witnessing a loved one's dying without being able to prevent it. They quietly sacrifice personal agenda to look after those in need, often sandwiched between child care and jobs and usually without advanced planning. They live a world apart from everyday reality and wonder if they will ever be normal again."

CAREGIVERS: (WSJ) (2000) The pool of potential caregivers will shrink compared to the growth of the elderly. By 2025, there will only be 3 younger people for each person 65+ compared with 4.6 now.. By 2050. the ratio will be even lower at 2.6 to 1. A financial gerontologist noted that between 1990 and 2010 there will be a projected growth of 88% of needy elders that will outstrip the 62% growth of caregivers.

Understanding Economic and Other Burdens of Terminal Illness: (Annals of Internal Medicine. 2000)  The Experience of Patients and Their Caregivers annals of Internal Medicine Adding financial concerns to the already emotionally draining experience of terminal illness can cause depression in caregivers and suicidal thoughts in the patients, On average, it costs Americans more than $30,000 above any insurance coverage to pay for the care required in their last year of life.

In a study by  R. Phillips and J. Soukup, the mean age of the terminally ill patients was 66.5 years (range, 22 to 109 years), and 59.4% of patients were at least 65 years of age. The leading causes of terminal illness were cancer (51.8%), heart disease (18.0%), and chronic obstructive pulmonary disease (10.9%). Among all patients, 50.2% experienced substantial pain, 17.5% were bedridden for more than 50% of the day, 70.9% had shortness of breath while walking one block or less, 35.5% had urinary or fecal incontinence, and 16.8% had depressive symptoms. In the previous 6 months, 33.5% of the patients had not been hospitalized, 36.8% had undergone a surgical procedure, and 22.3% had required a hospital stay involving a period in the intensive care unit.

Care Needs of Terminally Ill Patients

Overall, 16.3% of terminally ill patients had high care needs for transportation, nursing care, homemaking, and personal care. An additional 18.4% had moderate care needs, 26.0% had some care needs, and 39.2% had little or no care needs. Of patients who had high or moderate care needs, 62.0% needed transportation assistance, 28.7% needed nursing care, 55.2% needed homemaking assistance, and 26.0% needed personal care. In addition, 18.2% of patients had unmet needs for nursing care and 23.1% had unmet homemaking needs.

Analysis showed significant disparities in care needs according to sex, ethnicity, age, and income but not according to marital or insurance status. For example, 42.0% of African-American persons required assistance with nursing care but only 27.8% of white persons and 16.1% of Hispanic persons required such assistance . Similarly, 31.4% of patients 65 years of age and older required assistance with personal care needs but only 17.5% of patients younger than 65 years of age required such assistance . Among patients whose yearly incomes were less than $15 000, 38.4% required nursing care; however, only 23.5% of those with higher incomes required such care

Terminally ill patients with moderate or high care needs were significantly more likely than those with low care needs to report that "the cost of [their] illness and medical care was a moderate or great economic hardship" for their family (44.9% compared with 35.3%; difference, 9.6 percentage points ; that 10% of their household income was spent on health care costs other than health insurance premiums (28.0% compared with 17.0%; difference, 11.0 percentage points ; and that they or their families had to sell assets, take out a loan or mortgage, or obtain an additional job to pay for health care costs (16.3% compared with 10.2%; difference, 6.1 percentage points . Among patients requiring substantial assistance, 14.9% had seriously thought about or discussed euthanasia or physician-assisted suicide; however, only 8.2% of patients with few care needs had done so.

Similarly, caregivers of patients with substantial care needs were significantly more likely than caregivers of patients with low care needs to have depressive symptoms (31.4% compared with 24.8%; difference, 6.6 percentage points ; and to report that their role as caregiver was "interfering with [their] family or personal life" (35.6% compared with 24.3%; difference, 11.3 percentage points

Implementing interventions that provide assistance for patients' needs without imposing additional cost or effort on the caregiver may be the best way to ease the economic burdens of terminal illness.

Unskilled care is frequently not considered a covered health benefit but may help address many care needs that are generated by poor physical function and incontinence, such as transportation, homemaking, and personal care. By performing these services, unskilled caregivers can provide relief for primary caregivers, allowing them to offer emotional and other support to the patient.

Caregivers (NAHC 2000): Estimates indicate that almost three-quarters of elderly persons with severe disabilities receiving home care services in 1989 relied solely on family members or other unpaid help. Eight of 10 of these informal caregivers provide unpaid assistance for an average of four hours a day, seven days a week. Three-quarters of informal caregivers are female, and nearly one-third are over age 65. A 1996 telephone survey of US households estimated there were 22 million US households with at least one member who provided some level of unpaid assistance to a spouse, relative or other person older than age 50.

Table 16. Average Compensation of Home Health Agency Caregivers, October 1999
	Per-Hour Rates by Percentile					Per-Visit Rates by Percentile
	25th		Median		75th			25th		Median		75th
Registered Nurse	$17.45		$18.77		$21.00			$25.00		$26.60		$30.93
Licensed Practical Nurse	12.01		13.74		15.44			16.00		17.75		20.00
Occupational Therapist	21.61		23.63		26.13			40.00		43.00		47.00
Physical Therapist	23.48		25.64		28.09			40.00		44.00		48.00
Respiratory Therapist	14.15		16.09		17.74			42.49		46.00		49.25
Speech/Language Pathologist	20.12		22.51		25.00			40.00		42.53		48.28
Medical Social Worker	16.53		17.93		19.80			38.00		40.00		46.49
Home Care Aide III	8.13		8.94		9.52			11.00		11.88		13.00
Source: Homecare Salary & Benefits Report 1999-2000, NAHC/HCS, October 1999.

7. A home care program for terminally ill veterans reduced hospital per capita costs by $971. In the six-month study, patients receiving home care used 5.9 fewer hospital days than those in the control group. No differences were found in patient survival, activities of daily living, cognitive functioning, or morale. However, patient and caregiver satisfaction with care was significantly better among the patients receiving home care.

4. Paid Caregiver Article- what to look for when hiring someone to help a loved one

CAREGIVERS: (Alzheimer's Association of San Francisco 2000) The comment was that many caregiving parents simply refuse to take care of themselves- becoming, in effect, martyrs. Or are in denial about the problem. The children try to help but are reluctant to meddle. They note:

Job 1 is the care of the parent with dementia. This care is best when the caregiver is healthy both emotionally and physically

The child can help the healthy spouse and should. It is not meddling

The well parent has the primary responsibility. : The care of your sick parent needs a working relationship between you and your well parent.

They suggest

Pick the right time to talk. Avoid periods of high stress. Look for openings when your parent expresses concern, the listen actively. Don't jump to conclusions/solutions. Ask how you may help.

Earn the right to talk. Become invalid in the active care spending days and weekends as necessary before offering advice

Stay focused on the care OF the patients. Do not allow open feelings frustration and grief

Prioritize: parent and caregiver health and safety are main concerns, management of anxiety; depression and anger are important. "Don't sweat the small stuff"

Begin small .Suggest easy to take steps that will make a real difference such as having someone who the caregiver trusts to come in and help with specific tasks.

Use allies: a family meeting allows all to express their concerns and agree on a plan of SHARED care. A doctor or social worker may lend a hand in the discussion

Use tough love . If a parent is being abused or denied needed health care, call Adult Protective Services.

Have a plan B. In the course of dementia, crises such as accidents or inevitable declines in health with dictated changes no matter what the caregiver does. Be ready

Respect your parents choices if the are legitimate.

Find a role that fits as a listener, reality checker, information getter or gopher.

CAREGIVERS - (MetLife 2000) Employees who  care for elderly or sick relatives with long-term care insurance are twice as likely to stay in the workforce as those caring for relatives without it. Done in conjunction with the National Alliance for Caregiving and LifePlans, the survey also found that the presence of insurance allows for less stress and less job "flight." Also from MetLife, there is a very useful 28-page booklet (PDF only) called Resources For Caregivers at http://www.metlife.com/Business/Images/resource36.pdf. An additional "tidbit"...the 1999 MetLife "Juggling Act" Study found that caregiving costs individuals about $650,000 over their lifetimes, in the form of wages, as well as social security and pension contributions, that are lost because they take time off, leave their jobs entirely or experience compromised opportunities for training and promotions.

"The MetLife Study of Employed Caregivers: Does Long Term Care Insurance Make a Difference?" (2001)

"*Holding other factors constant, those caring for disabled elders with long-term care insurance are nearly two times as likely to stay in the workforce than are those caring for non-insured disabled individuals.

"*Insurance-financed care does not result in a significant reduction in the time working caregivers devote to caring. However, working caregivers of those with long-term care insurance devote more 'quality time'-- more companionship and less hands-on assistance with basic living activities than those without.

"*Caring for someone with long-term care insurance can reduce certain work disruptions among working caregivers. Sandwich Generation caregivers and those caring for very disabled elders are most likely to benefit.

"*Long-term care insurance can reduce certain 'social' stresses among working caregivers, i.e., the feeling that caregiving interferes with their emotional/social well-being or health.

"*Insured care recipients do not report a difference in the adequacy of family caregiving due to the work  status of the family caregiver. The level of reported undermet ADL need among insured care recipients with working and non-working caregivers is similar.

"Long-term care insurance appears to play an important role in keeping caregivers in the workforce and in reducing certain workplace disruptions and social stresses. This may be very significant for employers who are looking at corporate eldercare and policy-makers who want to reduce the negative economic effects of caregiving. Additional research on work-place, caregiving, and insurance issues will provide more knowledge about how to support family care-giving and meet the needs of working caregivers."

Caregiving: (USA Today 2001) Employers expect caregiving-related employee problems to increase in the next decade, even though they have few ideas to cope with the increased demand on employees.

The National Family Caregivers Association estimates that 54 million Americans were involved in caregiving in the last year, and 44% of those were men.

The National Council on Aging estimates that by 2020 some 40% of the workforce may be caring for older parents.

The average duration of caregiving is about 4 1/2 years

Long Distance Caregiver: (SF Alzheimers Association)

1. Asses the situation- You need baseline data on your parents health and safety, their ability to manage daily tasks to access help, their support network, and their financial resources. Meet with the doctor, social worker, their attorney, and service providers and establish a care alliance

2. Live there a awhile This will help you talk realistically with providers and offer the primary support and respite

3. Call a family meeting to prioritize needs and assign task Dementia disrupts families and strains relationships, yet it demands family teamwork. Getting an agreed on game plan is a crucial first step.

4. List priorities. Health and safety first then personal assistance. Don't sweat smaller stuff that your parents refuse or caregivers cannot provide. In dementia there is room for patient choices and for your grief over some of them

5. Empower the primary caregiver. He or she is key to your parents well being; your job is to help him or succeed. Listen supportively, share time and money generously as possible; offer advice sparingly. However if there is abuse, you have to intervene the protect the patient

6. Find your role. The caregiver may welcome help with handling bills, filling out forms, making phone calls, or tracking down down support services

7. Stay in touch. If phone talk is difficult with your parent, keep it short but make it often. Send cards and photos. Most importantly, call the caregiver. Recognition is the oxygen of family caregiving. Visits home are for them as much as for the patient.

8. Have a contingency plan. Crisis can occur suddenly and throw all into turmoil. Discuss back up plans in the family meeting. Budget time and money for emergency care and urgent visits.

9. Get help for yourself. You cannot expect primary caregivers to understand your needs, but you can find peers in support groups, where you and others can share what you have learned

Nearly 4,000,000 Americans have Alzheimers.

Caretaking is never easy: From a reader- "Have been caretaking my 92 yr. old mother for past 8 yrs. or so...she had several stokes in past couple months & finally had to put her in full-time care nursing home...really broke my heart...but she doesn't even know who I am anymore...spent 4 hours today, giving her pedicure & manicure & she thought that I was her M.D."

Coping skills from Caregiver.com

Caregivers: (2001) More than one quarter (26.6%) of the adult population has provided care to a family member or friend during the past year. Based on current census data, that translates into more than 54 million people.

Holiday Stress Assessment for Caregivers: (Michael Plontz)

Caregivers (Deidre Grab 2002) The Home Caregiver’s Guide to Coping With the Hospitalization of Your Loved One

Feeling At Home With Home Care: Choosing The Right Provider  (2002)

For seniors, those who care about them, hospitals, and extended-care providers  (2002)

TIPS ON BEDSIDE CARE IN TERMINAL ILLNESSES (2002)

Caring For An Elder From Far Away: Geriatric Care Managers

Top Ten Ways To Care For Yourself

Caregiving- when its time to call the doctor (PDF) The manner in which caregivers communicate a patient's change of condition can make all the difference in the outcome.

Caregiving: Incontinence: The Caregiver's Role (2002)

Caregivers and the Early Stages of Alzheimer’s Disease  

Medicare and Medicaid and Caregivers

Caregiving: (2002) Corporate America loses around $11 billion a year because of absenteeism, turnover and lost productivity among full-time employees who care for elderly people, according to a 1997 study by the MetLife Mature Market Institute and the National Alliance for Caregiving.

By law, many workers who care for elderly relatives can get time off. The Family and Medical Leave Act of 1993 provides 12 weeks of unpaid leave to workers in companies of 50 employees or more who have an immediate family member with a serious health condition.

Rates vary by company, but about 5 percent of employees, on average, use child care services and about 3 percent use geriatric care benefits at any particular company

Adult Daycare Does Not Benefit Caregivers,  A German study has found that geriatric day care has positive effects on demented elderly persons, who experience an improved feeling of well-being and stabilization of dementia symptoms, according to a study published in the July 2002 issue of Journal of Gerontology: Medical Sciences. However, the study found that providing day care for elderly adults has little or no effect on their caregivers.

Caregiving (2002) The number of employee caregivers is expected to increase between 11 million and 15.6 million employees, or one in ten employees, over the next 10 years

Working caregivers spend an average of 22 hours a week providing elder care and caregiving responsibilities can last as long as eight to 10 years

Working caregivers lose an average of $650, 000 over their lifetimes in lost wages, lost Social Security benefits, and forfeited pension contributions

Caregivers (Gary Barg 2002)  The latest statistics state that there are almost 54 million caregivers in the country today. So what can you and your family do? The same as caregivers always do: stand up for your loved one‘s needs among your family members at the same time you advocate for him or her in the healthcare system. Acknowledge when your loved one is tired or unable to be around others for prolonged periods of time. Know what support you need from your friends and family and how to piecemeal out these responsibilities and most important of all, take care of yourself.

Do not forget to communicate with your loved one and your family members about your fears. Fear can grow to a point where it chokes your family’s ability to share feelings as tensions mount. The world can all learn a lot from caregivers; we have been at war with fear, grief and depression every single day as we fight for our loved ones health and well being. We just need to remember to fight for our own health and well being, as well.

Things For Caregivers To Start Doing Now

1. Keep records of all medications and reactions. Make notes about what works, what doesn’t and when you informed the physician of any problems.

2. Keep records of all doctor appointments: the reason for the visit, the doctor’s responses to your concerns, any procedures performed, etc.

3. Plan for the unexpected. Discuss plans and wishes of everyone involved in the caregiving family. Talk about final resting places and what arrangements your family will want.

4. Have advanced directives filled out and given to the primary physician and all relatives who may need the form.

5. Have a last will and testament completed or updated: without a signed will, the courts will decide how to distribute the possessions of your loved ones.

6. Keep a record of where all of your important documents are kept. When an emergency or tragedy occurs, locating information should not be where we spend our thoughts and energies.

Caregiver Cardiovascular Health

Home Care Safety for the Caregiver

End-of-Life Care: Questions and Answers National Cancer Institute (2003)

Long Term Care:  (2003) America's women caregivers, those who care for an elderly or sick relative, expect to take on the financial burden of their parents' long term care needs, a new survey by Zogby International reveals. More than half of those polled (55%) say it is likely that they will be financially responsible for the parent or family member for whom they are caring. According to the Long Term Care Partners' "Portrait of Women Caregivers," 39% of those surveyed say their experience as caregivers makes them more likely to consider purchasing long term care insurance for themselves. he typical caregiver spends between three and ten hours per week (57%). Older caregivers, those in the 51-65 age group, spend the greatest amount of time providing assistance. "Because of their personal experiences, caregivers understand better than anyone the need to plan for long term care and the value of long term care insurance

Caregiving: (2003) More than 55% say it is likely that they will be financially responsible for the parent or family member for whom they are caring. Also 39% of those surveyed say their experience as caregivers makes them more likely to consider purchasing long term care insurance for themselves.

Percent of Adults Aged 65 Years and Over Who Need the Help of Other Persons with Personal Care Needs: United States, 1997 - 2002, National Center for Health Statistics

Caregiving: (National Alliance for Caregiving 2003) 64% (14.1 million) of caregivers of a person aged 50+ are employed full time (52%) or part time (12%)

54% of employed caregivers made changes at work to accommodate caregiving

49% changed their work schedule; went in later; left early ; took time off during the day

11% took a leave of absence

7% worked fewer hours or took a less demanding job

3% turned down a promotion

6.4% quit their jobs

3.6% chose early retirement

60.5% of caregivers are women.

Caregivers: —“The Silent Crisis”

Some of the information has been supplied by the National Alliance for Care Giving and the National Center for Women and Aging. I am combining them here to save space.)

1) The care giving employee works fewer hours than desired.

2) The employees must take time off from work without pay.

3) Some employees have to turn down advances.

4) The employee’s ability to stay in the work force is overtaxed.

5) The employee’s vacation time, sick leave, and personal leave is quickly used up.

6) The employee’s own needs (emotional, physical, financial) go unmet.

7) Some employees simply have to quit their jobs.

8) The aggregate cost for care giving to US business…exceeds $29 billion per year.

9) 69 percent of care givers arrive late or leave work early.

10) 67 percent take time off during the day.

11) 22 percent take a leave of absence.

12) Employee loss of $566,500 in lost lifetime wages.

13) Employee loss of $67,000 in lost lifetime retirement contributions.

14) 29 percent pass on promotions or new assignments.

15) 25 percent pass on transfers or relocations.

Selecting a Rehabilitation Program  (2003)

The Male Perspective: Caregiver Burnout  (2003)

Caregiving: (2003) A study published in the Proceedings of the National Academy of Sciences early edition examined older people caring for other older people (i.e. one spouse caring for the other). The study found that older people who take care of chronically ill loved ones over long periods experience continuing stress that boosts the risk of age-related diseases by prematurely aging caregivers’ immune systems. It can lead to an in-creased risk of heart disease, some cancers, arthritis, or other age-related diseases.

64% (14.1 million) of caregivers of a person aged 50 or older are employed full time (51%) or part time (12%)

54% of employed caregivers made changes at work to accommodate caregiving:

49% changed their work schedule; went in later, left early, took time off during the day;

11% took a leave of absence;

7% worked fewer hours or took a less demanding job:

3% turned down a promotion

6.4% quit their jobs

3.6% chose early retirement

60.5% of employed caregivers are women.

Elder care:  (2003) Another MetLife study found that men are just as likely as women to report that they are the primary caregiver for elderly parents.

Coping Skills

Family Friendly Facilities: The Only Way to Go

Long Distance Caring By Emily Carton. If you have a loved one in another state, read this

When Guilt Comes Knocking

Anticipatory Grief

Caregiver burnout: (Dr. M. Ross Seligson 2003) Being able to cope with the strains and stresses of being a Caregiver is part of the art of Caregiving In order to remain healthy so that we can continue to be Caregivers, we must be able to see our own limitations and learn to care for ourselves as well as others.

It is important for all of us to make the effort to recognize the signs of burnout, In order to do this we must be honest and willing to hear feedback from those around us. This is especially important for those caring for family or friends. Too often Caregivers who are not closely associated with the healthcare profession get overlooked and lost in the commotion of medical emergencies and procedures. Otherwise close friends begin to grow distant, and eventually the Caregiver is alone without a support structure. We must allow those who do care for us, who are interested enough to say something, to tell us about our behavior, a noticed decrease in energy or mood changes.

Burnout isn't like a cold. You don't always notice it when you are in its clutches. Very much like Post Traumatic Stress Syndrome, the symptoms of burnout can begin surfacing months after a traumatic episode. The following are symptoms we might notice in ourselves, or others might say they see in us. Think about what is being said, and consider the possibility of burnout.

Feelings of depression.

A sense of ongoing and constant fatigue.

Decreasing interest in work.

Decrease in work production.

Withdrawal from social contacts.

Increase in use of stimulants and alcohol.

Increasing fear of death.

Change in eating patterns.

Feelings of helplessness.

Strategies to ward off or cope with burnout are important. To counteract burnout, the following specific strategies are recommended

Participate in a support network.

Consult with professionals to explore burnout issues.

Attend a support group to receive feedback and coping strategies.

Vary the focus of caregiving responsibilities if possible (rotate responsibilities with family members).

Exercise daily and maintain a healthy diet.

Establish "quiet time" for meditation.

Get a weekly massage

Stay involved in hobbies.

By acknowledging the reality that being a Caregiver is filled with stress and anxiety, and understanding the potential for burnout, Caregivers can be forewarned and guard against this debilitating condition. As much as it is said, it can still not be said too often, the best way to be an effective Caregiver is to take care of yourself.

The Medical Advancement of Personal Needs, By Vincent M. Riccardi, MD- Among the many types of responsibilities for caregivers, there are three I wish to address here: those that are clearly medical, those that clearly address personal needs and those in the gray area in between.

Into the Hands of Strangers: Placing A Loved One Into A Nursing Home

Levels of Adjustment

The MetLife Study of Employed Caregivers: Does Long Term Care Insurance Make a Difference?

Resources for Caregivers

Sandwiched: ( ComPsych Corporation) Workers who care for both children and elderly relatives put in enough caretaking hours to make it a second job. Of the employees who were polled, 8 percent are part of the so-called Sandwich Generation, caring for both children and elders. These individuals reported spending an average of 36 hours per week on caregiving duties. "Two things appear to be increasing: workload and what we call 'care-load,'" . "More and more Baby Boomers are caring for elderly relatives as well as children. Add to this the increased pressures at work due to layoffs, and you've got employees in dire need of help. "To maintain morale and productivity for these time-taxed employees, it is important for companies to have a work-life and employee assistance program in place,

Caregiver Cardiovascular Health

Eldercare: (2003) An AARP/National Alliance for Caregiving study from as early as 1997 estimated that one in four American households struggled to provide care for an elderly individual. Another, from Metropolitan Life Insurance Company, estimated productivity losses due to elder care issues ranging from 11 to 29 billion dollars per year. The SHRMâ 2003 Elder Care Survey reflects similar findings as 47 percent of HR professionals report seeing an increase in the number of employees dealing with elder care issues over the last several years. Despite the increase, only 25 percent of organizations offer elder care benefits.

HR professionals estimate that nearly 15 percent of employees in their organization deal with elder care issues. But, a significant percentage of respondents witnessed employees who missed a full day from work (59 percent), encountered workday interruptions (44 percent) or stress-related health problems (29 percent). Sixteen percent of all respondents said they had experienced turnover or attrition due to elder care issues.

Dealing with Difficult Behavior

Home Health Care: An Attractive Alternative

Care for the dementia patient:  (Teri Cole 2004) Dementia and the Hospital Stay For many families, the thought that they may be unable to care for a loved one with Alzheimer’s disease or a related dementia at home is difficult to consider. It can be a lot easier to deny there is a problem or avoid thinking about the issue altogether. The possibility that assisted living or skilled nursing care may become necessary involves planning ahead for such contingencies. This can be an important part of providing optimal care for the person with Alzheimer’s disease. At the Long Island Alzheimer’s Foundation, we receive many calls from family members looking for information about residential options for a loved one. They state that home care is too overwhelming and stressful and they are unable to handle all of their loved one’s increasing needs.

Families ask how to determine which type of facility would best answer their needs— assisted living or nursing— homes and how they differ.

Today many Assisted Living Facilities and Nursing Homes have separate Special Care Units designed to accommodate the physical, cognitive and social needs of the resident with dementia, where programs and activities are provided in a safe and secure environment. The staff in these units is specially trained to work with individuals with dementia. Some Special Care Units also incorporate design features such as color-coded hallways, visual cues, and secure walking paths for additional security that alleviate some of the problems associated with dementia.

Below, we offer some information and suggestions for families trying to understand their options with regard to residential care.

Assisted Living Facilities

Assisted Living Facilities (ALFs) provide a special combination of residential housing, personalized supportive services and healthcare while allowing some independence. These residential settings do not provide the skilled nursing/medical care provided in a nursing home.

They are designed for individuals who are independent and active but who require help with some activities of daily living such as bathing and preparing meals. Some assisted living facilities can also provide for individuals who are more frail and in need of additional assistance. Acceptance of an individual with dementia can vary from one facility to another depending upon the kind of care they are equipped to provide.

In general, an assisted living facility provides residential care in which an individual is entitled to room and board, housekeeping, supervision and limited personal care such as dressing, grooming, bathing, and other daily activities. Each resident’s needs are assessed periodically to monitor any changes in functioning and provide the proper services.

When choosing an assisted living facility it is important to explore the types of services, recreation and socialization opportunities that are available. Visiting the facility and speaking with staff, as well as residents, can be very helpful in making decision. It may also be helpful to observe recreation activities, as well as how the residents interact and socialize with one another.

Aside from recreation and socialization, it is vital to examine the adequacy of safety precautions and security. One important issue to consider is how many staff members are present during the day and evening. Financial planning is very important when considering an assisted living facility because costs can range between $3,000 and $5,000 a month. While some long-term-care insurance policies cover assisted living, for the most part, costs are covered through private payment only. Licensing and regulation of ALFs vary from state to state. In New York, most facilities are regulated and licensed at the state level. There are no federal regulations for assisted living.

Nursing Homes

Nursing Homes, or Skilled Nursing Facilities, are designed for adults who are in need of 24-hour-a-day, 7- day-a-week nursing care. A nursing facility may be necessary when an individual has needs that cannot be treated through a home care program or other residential option.

The types of services that a nursing facility can provide (in addition to room and board, housekeeping and personal care) include nursing services, medical care, therapies, recreation, socialization and security.

Nursing facilities that do not have a separate, secure Special Care Unit catering to those with dementia will often provide dementia programming. These programs provide activities to meet the needs of the residents with dementia, but the residents are not housed in a separate designated unit. In either case, special activities should be geared to the cognitive abilities of the patients with the purpose of maintaining or optimizing the individual’s capabilities.

Nursing home admissions require that the individual have a need for nursing/medical monitoring or care and/or assistance with activities of daily living.

Planning ahead is important because placement in a nursing facility may take some time, so it is best not to wait for a crisis situation to begin thinking about placement.

Costs for a nursing home can be covered by various means: private payment, long-term-care insurance, Medicare (for a limited time) or Medicaid (though an elderlaw attorney or financial advisor should be consulted to determine how to qualify). The outlay for a nursing  home residency can also be costly, but if you plan ahead for placement, the process can be a lot easier.

Nursing Homes are licensed and regulated by individual states. In New York, nursing homes are inspected annually by the New York State Department of Health. There is also federal oversight.

Family members often ask which facilities have the best reputation and offer the best programs for their loved ones. We can only give them guidance as they work through the process and point out what services they can expect from each type of facility. Ultimately, it is the family that has a better idea of the type of place in which their loved one would be most comfortable.

Visiting the facility and talking with appropriate staff members are the best ways to determine the most suitable residence. Again, we emphasize to family members the importance of looking at various facilities before they reach a crisis so that they have the opportunity to investigate their options without the time and emotional pressure that an emergency situation can bring.

If the family members find a residence that seems appropriate, even though the time is not right, they can always put their loved one’s name on a waiting list for the future. .

1/28:  Questions to Ask When Evaluating Nursing Homes:

1. Does the facility appear clean and odor free?

2. Are there appropriate activities tailored to the residents’ needs?

3. Look at the menu and also at how the food is served. Are dietary needs and individual likes and dislikes considered?

4. Does there appear to be positive interaction between the staff and residents? Are call bells answered promptly?

5. Do the residents appear content? Are they involved in activities?

6. Are the residents well groomed?

7. Is the environment conducive to safety and in good repair?

8. Is family participation encouraged?

9. Does the facility have a program/policy to restrict the use of restraints?

10. How many beds are on a unit and what are the staffing patterns?

11. Inquire about hospital affiliations.

12. Is there an outside area or grounds for walking?

13. Does the nursing home have a good reputation in the community?

14. Nursing homes are inspected annually by the New York State Department of Health and the results of that survey must be posted in a public area for YOUR review. Alternatively, you can visit the Medicare website—www.medicare.gov—which lists each nursing home and any problems found by state surveyors.

The above list is not all inclusive, but simply provided as a guide to assist you. Also talk to families when you are in the facility. Ask if they are satisfied and happy with the care their relative is receiving. .

Reprinted from the April 2002 LIAFLine article on nursing homes by Virginia Belling, RN, MS, Director of Senior Placement Services.

Tips for Caregivers: Coping With Stress and Anxiety

Caring For An Elder From Far Away

Give Yourself a Break, Right Now

Maintaining Emotional Intimacy When Your Loved One is Ill

"Care Managers" Help Depressed Elderly Reduce Suicidal Thoughts National Institute of Mental Health

Setting limits in caregiving:

Diabetes, Exercise and Caregiving

National Alliance for Caregiving: (2004) The National Alliance for Caregiving and the AARP released a report, “Caregiving in the U.S.” estimates that there are about 44 million people who are providing unpaid caregiving services to an adult, most of whom are older. The study also finds that 39% of caregivers are men, which is higher than the rate of 25% found in earlier studies. It estimates that the value of family caregiving  of society is over $250 billion annually.

Caregiving: (National Family Caregivers Association 2004) “The male/female ratio involved in caregiving has changed dramatically. Caregiving used to be considered a women’s issue based on data that showed 75 percent of "family" care was provided by women. The new survey shows a much more even split: 56 percent female, 44 percent male.”

In order for men to properly care for their loved ones, they must remember to care for themselves. Here are seven emotional and physical tips for male caregivers:

Participate in a support group.

Vary the caregiving responsibilities among family members or friends.

Exercise on the average of three times per week and maintain a healthy diet.

Establish time for meditation

Practice time management.

Prepare all necessary documents, i.e.: insurance policies, deeds, loans and funeral arrangements.

Stay involved in hobbies.

Don’t isolate yourself as you care for your loved one. Create an informal support network.

Frankly, I think it looks the same for women caregivers.

Caregiving- (2004) a perfect example of material for the elderly. A caregiver was concerned that her father was becoming more and more isolated. So she found someone roughly her father's same age who had similar background and paid her to come in twice a week to talk with her father. Of course she could not tell her father his "new found friend" was being paid, but I don't see the problem with that. Her father looked forward to the visits each week and picked up emotionally. The "friend" also needed the money (it was only like $10 per visit plus expenses like gas). Great idea.    

Women caregivers: (2004) Women’s employment and earnings patterns are largely shaped by their role as the family caregiver. For example, Metropolitan Life interviewed a sample of women to see how caregiving affected their work schedule and found that a large number had taken actions that reduced their earnings. One-third had decreased their hours to care for a child or parent (see Figure 4). Nearly as many had either quit their job or retired early. And twenty percent had moved from full to part-time work in order to provide care.

Clearly, caregiving has a profound effect on the work schedule of many women.

Mindfulness and Love in Your Role as A Caregiver

Respite: Enjoy A Guilt-free Time-out

Cancer and Nutrition, What Every Caregiver Should Know, by Hillary Wright, Staff Writer

Improve Strength to Participate in Daily Activities: (2004) Caring for a person with cancer can be difficult, especially as you witness a noticeable decrease in strength and an increase in fatigue. A person with cancer often experiences muscle breakdown and weight loss in response to the disease. Over time, this muscle breakdown and weight loss leads to fatigue and a loss of strength, which may keep your loved one from participating in daily activities. It is common to want to know why this is happening and if there is anything you can do to help.

End of Life Tips for Caregivers

Hiring an In-Home Caregiver: What You Don't Know Could Hurt You

Taking Advantage of your Community Support Systems

Long Distance caring: (WSJ) A 2004 study of 1,130 long-distance caregivers set for release today shows the out-of-pocket cost of caring for an elderly relative who lives more than an hour away has doubled since 1997.

Long-distance caregivers' average out-of-pocket spending has risen to $392 a month, compared with $196 seven years ago. That puts the average long-distance caregiver's costs at more than $4,700 a year, on a par with the $4,694-a-year average cost of a public-college education. The sharp rise in drug and medical-supply costs are partly to blame, and government cutbacks are shifting more long-term care costs to families.

An estimated seven million Americans are long-distance caregivers, defined as someone who cares from afar for a chronically ailing person.

Among the 80% of long-distance caregivers who are employed, 44% have rearranged their work schedules and 36% missed days of work, with an average of 20 work hours a month lost to caregiving duties.

I admit that LTC policies are not perfect but they can relieve at least 3/4 of the anxiety (and probably cost) of caring for an individual.

Caregivers Providing Pain Management, By Hilary Gibson One of the most frightening and stressful aspects of caregiving is not knowing what to do when your loved one is experiencing pain. It’s important to remember that there is actually no reason for this pain to go untreated or be ignored. It is usually more effective to treat pain earlier rather than later, when it might become more severe and be even more unbearable. Pain that goes untreated can lead to a major disruption in a person's ability to work, to deal with relationships and with their view of the world in general. By recognizing the fact that under- and untreated cancer pain can lead to needless suffering, despair, and deeper depression, a caregiver has the ability to inform members of their loved one’s medical team and alert them to the severity of the pain. When you’re caring for someone who has this type of pain, you may be asked to: administer medication, including having to make decisions about what to give and when to give it; keep records of all medications given, including doses, quantities, and how often; encourage or remind the person about taking their medications; provide a number of non-drug interventions, such as massage, applying ointments and lotions, cold and heat, positioning and helping them with their mobility; help provide distractions, as well as emotional support.

Caring For An Elder From Far Away: Geriatric Care Managers (Terry Weaver, M.P.S., A.C.C.)

As an adult, balancing work and elder care can be a challenge whether your parent lives next door or out of state. Add children to this, and the situation becomes compounded. Legal, financial and long-term planning for elder care is crucial, and long distance caregivers need to prepare for travel and time off from work. Face the facts, most older adults want to stay right where they are. They do not want to relocate, even if it means being closer to family. If this is what the elder wishes, as the child, you must respect their wishes.

For people who work and care for an aged family member, (particularly when that family member lives far away), one solution is to hire a professional geriatric care manager. A geriatric care manager is a professional who specializes in assisting older people and their families with long-term care arrangements. Care managers have a minimum of a bachelor's degree or substantial equivalent training in gerontology, social work, nursing, counseling, psychology or a related field.

Prolonged illness, disability or simply the challenges of aging can significantly alter the lifestyle of older adults. Daily responsibilities can become difficult. Efficient coordination of medical, personal and social service resources can enhance the quality of life for older adults and their caregivers.

Geriatric care mangers assist older adults in maintaining their independence at home and can ease the transition to a new setting, if needed. Geriatric care managers also help:

Conduct care planning assessments to identify problems, eligibility for assistance, and need for services.

Review financial, legal, or medical issues and offer referrals to geriatric specialists to avoid future problems and conserve assets.

Act as a liaison to families at a distance, making sure things are going well and alerting families to problems.

Assist with moving an older person to or from a retirement complex, assisted living facility, or nursing home.

Offer counseling and support.

How do you know when it is time to call a professional? Look for these signs.

Is your loved one losing weight for no known reason? Do they fall?

Is the home unkempt and becoming unsafe? How are meals made? Who pays the bills?

Are they able to(and do they) maintain a neat appearance? Has drinking become a problem?

Is it safe for your parents to drive? If not, who does the driving for them?

Has there been a sudden memory loss or increased confusion?

Of course in order to answer these questions, you’ll have to pay a visit to your long distance loved one, or rely on information from a relative or friend who is close to that loved one. There is no reason to feel guilty about being far away as long as you are doing everything that you can to help.

The Male Perspective: Caregiver Burnout

After Caregiving: Picking up The Pieces, By Brenda Race

As a caregiver, we totally commit ourselves to caring for another person who no longer functions as they once did in the normal scheme of life. We move in with them or move them to us. We give up our jobs, our own independence, and very often our family and friends. We become so involved with the care of that person out of love that we ourselves are removed from normal day to day living. Our entire life revolves around comforting and making our loved one feel loved. We protect them at all costs. In a very real sense we have given our life for another.... not out of obligation but out of LOVE! The ultimate test of LOVE for another! Then one day we wake up and our commitment has been released to a far greater LOVE in a place of no more pain or suffering! We grieve and then the process of finding our way back into the world begins anew.

How do we pick up the pieces and start to live again? I guess there is no so-called normal pattern that each of us has to follow. It seems to come down to taking one step at a time...some walk slower than others and some speed their way back out into the world! Often we take one step forward and two backwards ... it is not an easy process but there is a life after caregiving! We just have to look forward and find opportunities that are once again there for us. Renew old friendships, find a job that you feel good doing, do volunteer work (we already know you are a caring concerned person!), find a new or renew an old hobby.... but begin to take a few small steps towards living again! One of the best therapies is finding a friend you can talk to...one who will listen and support you as you ease back into the world! Soon you will find that life does still exist and you are a part of it! Butterflies are still flying and the birds are still singing. The light of another day is showing through the clouds, and all that you gave up was well worth it in the end! We are better than ever for our commitment. We are forever changed in a good way.... no one can ever take that total love away from us as we again join the world!

Brenda Race, R.N. was caregiver to her mother.

The Caregiver Helpbook: Powerful Tools for Caregiving , The Caregiver Helpbook is a 300-page book designed to provide caregivers with "tools" to increase their self-care and their confidence to handle difficult situations, emotions and decisions. These tools will help caregivers to:

Reduce personal stress.

Communicate effectively with other family members, doctors, and paid help.

Practice self care.

Reduce guilt, anger, and depression.

Reduce tension and relax more.

Make tough decisions.

Set goals and problem-solve.

Selecting A Rehabilitation Program by Karyn Scully B.S.N., R.N., C.R.R.N.

As Caregivers, we understand that our loved ones will be admitted to a medical care facility, usually a hospital, at one time or another. Sometimes, even if our loved one is medically stable, and ready to leave the hospital, there are still needs to be met and work to be done. That is when the doctors recommend a rehabilitation program.

The person who will have information about area rehabilitation (rehab) programs is usually the discharge planner. There are many forms of rehab programs, and it is important to assess what your loved one's needs are, before making a decision as to which program is appropriate to insure maximum recovery. Make sure you discuss these needs clearly and accurately with your doctor, as well as with the discharge planner, to avoid gaps or misunderstandings.

Rehab programs are designed to offer different levels and intensity of therapy. Acute rehabilitation programs provide at least three hours a day of physical, occupational, and speech therapy.

Inpatient rehab programs offer less than three hours a day, and allow a longer length of stay for recovery. They are offered either in a hospital, nursing home, or a free-standing facility.

Here are a few questions to ask when looking at prospective programs.

Is the program accredited by the Commission on Accreditation of Rehabilitation Facilities (CARF) Programs must meet specific criteria and guidelines to qualify for this national standard and receive certification.

How many therapy hours are provided each day per week and how will they be scheduled? Rehab programs offer a variety of "therapy" services. Ask how many of those hours are physical, occupational, or speech therapy. Is the therapy offered at the same time each day or will it be provided at different times.

What are the certification and education levels of the staff that will be providing the Rehabilitation Program? When did the therapists last take classes and training? Are they certified? The field is constantly changing as research and new developments occur. You want to know that the staff is equipped with the most up-to-date information and training in Rehabilitation.

Are the additional services which may be required readily available to that facility? This may include X-ray, EKG's, or specialized services such as physician specialists, dietitians, or social workers. Ideally, you would like to have all the services available at one facility, rather than traveling all over town to get these services.

Your loved one's rehab program will change as recovery grows nearer. Rehabilitation is a continuum of care until the patient reaches maximum functional recovery. There are many steps in reaching this goal. Each step requires research and planning for a smooth transition from acute care to being discharged from the rehabilitation program.

A Difficult Decision, Paulette Kaufman 2005

The decision to place a loved one in an assisted living facility is a difficult but frequently unavoidable one. Even though the choice may be absolutely necessary, the person forced to make the decision for their spouse or parent often feels an overwhelming sense of guilt.

When the time came for me to decide to place my mother, who suffers from Parkinson’s disease, into assisted living, I knew as a nurse that it was the best decision for both my mother and me. All the same, I felt an enormous amount of guilt, and when I came home after helping my mother move into her new community; I broke down, sobbing.

Today I work as a marketing counselor for the facility where my mother lives – so I see her every day and know firsthand that she receives excellent care – yet there are still times when I fail to hold back the tears.

Many caretakers who decide to put their loved one in an assisted living facility think they have failed them somehow, even if they have already spent years caring for them and simply cannot do so any more. I had been taking care of my mother for three years before bringing her to live in a long-term care community, helping her with daily tasks and spending every other night at her house. I even managed to make it a family effort, with my son easing much of the burden during his summers home from college. My mother did not want to leave her home, and I did all I could to see that she would not have to leave.

But eventually that time came. In a fall my mother broke her foot, but she hid the injury from me. A fall like my mother’s is especially worrisome because Parkinson’s is an incurable disease which progressively and inevitably gets worse. Patients are often able to minimize the ill effects of the disease for a time, but eventually they will require frequent or constant assistance from a caregiver. My mother’s fall was a sure sign that she could no longer live on her own. When her doctor discovered that her foot was broken, he told her this in no uncertain terms. Now it became my responsibility to help her find a new home, and though part of me wanted to take care of her just as she had taken care of me as a child, I knew that I did not have the capability to care for her as her Parkinson’s progressed.

In some respects my mother and I have been fortunate, in that she was aware of her doctor’s instruction and conscious of the reasons for entering an assisted living facility. Children and spouses of Alzheimer’s patients, on the other hand, must bear the full weight of responsibility when choosing the option of assisted living, though many spend months or even years denying this fact. Usually, when it comes time to seek out an assisted living facility for an Alzheimer’s patient, that patient has already reached an advanced stage of the disease and likely exhibits a number of disturbing symptoms. If the caregiver has decided that it is time to consider assisted living, the patient may already be in need of help with dressing, shaving, eating, and even using the bathroom. Perhaps the patient has become delusional, convinced for instance that the caregiver wishes to harm them. These are all common symptoms of Alzheimer’s disease, and, like Parkinson’s, such symptoms will only get progressively worse. Recognizing that a patient whose Alzheimer’s has reached such a stage and may need to enter an assisted living facility is positive. Unfortunately, I have met many people who think they can convince their parent or spouse of their need to enter an assisted living community, when in fact it is only the children or spouse of Alzheimer’s patients who can ultimately make the decision.

Compounding the grief is that patients who have reached an advanced stage of Alzheimer’s often lose awareness of recent experiences and surroundings, and may even lose recognition of their caregiver and other loved ones. Because of this, the patient will probably be confused by the move and unaware of the suffering of the child or spouse responsible for placing them in assisted living. Like I did, people begin to cry at times. Depression and anxiety, caused by guilt, sometimes become acute.

But there are a number of things that one can do to diminish feelings of guilt. In my case, besides visiting my mother every day, I always make sure that she has fresh flowers in her room. When she was able to, she spent a lot of time in her garden, and the flowers help her to experience a bit of the garden all the time.

On Sundays, I spend the day with my mother in my home, picking her up early in the morning and taking her back to her assisted living facility in the evening. I try never to miss a week.

Beyond that, it helps to remind oneself of the advantages that an assisted living facility affords. Working in the community where my mother resides provides me with some added insight into those advantages, for which I am grateful. Besides the obvious – the physical aspect of care – there is the always-important social aspect of continuing care communities. My mother, even before entering the facility, was very antisocial, and I even made a friendly bet with the staff that they would not be able to get her out of her room. For three and a half years I was winning that bet, but six months ago, after much persistence on the staff’s part, they finally got her to participate in the events.

One day recently, while I was with my mother, she took out a quarter from a drawer in her room. Though Parkinson’s makes it difficult for her to speak, she managed to say, “cards” – my mother had won the quarter playing cards. She never used to play cards.

Despite moments like these, which remind me of all that an assisted living facility offers that I alone could not, the guilt and the grief never entirely go away. But I know my decision was the right one, and I know that I am not alone in feeling involuntary pangs of guilt. My hope is that others in my position share these same realizations.

Getting Involved: An Introduction to Rehabilitation for the Primary Caregiver (Christian Andaya RPT )

What should a caregiver expect when their loved one is facing a long regimen of rehabilitation? The whole process can be a mystery and often it is unclear as to what role the caregiver should play in the process. The more progress your loved one makes in rehab, the better you both will feel. The process of rehabilitation is not an easy one but with your help and support, your loved one will gain back the most capability possible.

How do you get the most out of your love one’s rehabilitation? It’s just a matter of getting INVOLVED. Make sure you read about your loved one’s condition and educate yourself so you can ask the right questions. Try to understand what your loved one is going through medically. Be familiar with of your loved one’s insurance benefits. For example, the “length of stay” in a facility should be discussed with the staff. If your loved one dislikes hospital food ask dietary staff if you could bring the patient’s favorite foods. In rehab, it’s the doctor that orders and discharges the therapy or nursing services. Be aware that nurse practitioners, chiropractors and physician assistants can also give some orders. Getting involved may mean a lot of different things depending on your particular situation but there are certain basic guidelines you should try to follow.

Usually there is patient conference scheduled that family members can attend. Make sure you can be there. If one is not scheduled, ask that one be arranged. At the conference you will be informed about your loved one’s overall medical, physical, emotional and psychological status. The goals for the patient are established and the expectations of the patient, family, medical professionals, including case managers, are also discussed.

When therapy has started, you should frequently discuss the progress that your loved one is making with the physical therapist, occupational therapist, in house doctor and nurses. Ask any questions that you have and make certain your perception of how your loved one is doing is the similar to theirs. Ask permission to and read the medical charts. Do not be intimidated by the medical setting or your lack of a medical education. Go over every page and ask about anything you don’t understand. Remember that everything is written in the medical charts including changes in medication. The patient has the right to go over her/his chart as does the primary caregiver with proper authorization. You can ask the case manager for details.

Attend every activity including physical therapy, occupational therapy and speech therapy appointments. Talk with each of the different therapists about your loved one’s routine. Family members with appropriate training can learn and easily do some of the exercises. Ask if you could help do the exercises with your loved in their free time. You should also encourage your loved one to attend every scheduled activity. Rehabilitation is never easy and your loved one will need your support to get the most out of it. It also helps the patient battle depression. A great deal of success is dependent upon the patient’s willingness to get better, but always keep in mind that your loved one has the right to have a bad day or even refuse entirely.

When your loved one has shown sufficient progress to think about going home, you should inquire about the discharge date and get yourself involved with the planning in plenty of time. Ask about the necessary equipment that Medicare or insurances can purchase. If the equipment cannot be purchased through insurance, go to the nearest second hand shop or look in the classified section of your local paper. I have seen brand new walkers, bedside commodes, canes and wheelchair for sale in a fraction of the new price. If you do find second hand equipment, make sure you have it checked with the PT, OT, and NSG staff. Medical equipment shops also can offer second hand equipment, as do some charitable institutions.

As the primary caregiver, you are an important member of a team working together to improve your loved ones health. Your understanding and participation is just as important as the medical professionals who are working very hard to help your loved one’s physical and mental outlook. Work with us and ask questions and we will all see the best results.

" I have just started to look for someone to assist my parents. (2005) What should I expect for hourly fees and what services can be provided? Mine need some light housekeeping, shopping, errands, cooking, driving, etc. What can you tell me about fees, licenses, insurance and other information to look for?"

Solution. A large number of businesses provide the homemaker/companion services you want for your parents. Most can be found in the yellow pages of your telephone directory under Home Health Services. Or, call the Eldercare Locator. Developed by the U.S. Administration on Aging, the Eldercare Locator is a free nationwide directory assistance service. It helps older people and their caregivers find local support services to help them live independently in their own community. This information is available only through their toll-free telephone number 1-800-677-1116, between 8am and 9pm weekdays, Eastern Time.

Two types of agencies are listed in your phone book's Home Health Services category: (1) agencies that are certified by Medicare, and (2) agencies that are not certified by Medicare. Generally speaking, there is no difference in quality between the two. Agencies that are certified by Medicare generally provide health/medical care services that are paid for by Medicare. Any homemaker/companion services they provide are usually only minimal and provided only on days when medical services are provided.

Most agencies that are not certified by Medicare provide homemaker/companion services as well as personal care services (assistance with activities of daily living such as bathing, dressing, medication reminders, etc.). There are two types of personal care services: (1) those requiring only suggestions and reminders, and (2) those requiring hands-on assistance. These services are not covered by Medicare, and must be paid out-of-pocket by the client.

Costs vary widely, generally from $15 to $20 per hour depending on which and where services are to be provided. Because most home health agencies have a 4-hour minimum per visit, it's most economical if the specific activities to be done by the agency are planned out ahead of their visit. This can even include preparing a few meals every week for storage in the refrigerator.

Licensing, insurance requirements, bonding requirements, etc. vary widely depending on where the home health agency is located. However, here's some advice based on personal experience:

Interview each agency in person to narrow down your list of candidates.

Ask each agency for a list of referrals. Then, actually check out several referrals. Don't forget to ask each one what they didn't like about the agency. (Or, to be more tactful, ask each referral what the agency could have done better.)

Require that the agency and its employees be fully bonded, even if your state doesn't require it. (I would never make an exception to this rule.)

Select agencies that are locally-owned. While they may charge the same, larger regional or national home health firms with many offices have a lot of managers who must also be paid; that leaves less money to hire quality caregivers. Locally-owned agencies can usually afford to hire better caregivers.

Before making your final selections, interview the owner of the agency, or the person who hires the agency's caregivers if that isn't the owner. More often than not, caregivers tend to reflect the attitudes and ethical standards of the people who hire them. You want compassionate caregivers who will genuinely be concerned for your parents, not people for whom it's simply a "9-to-5" job.

After you've narrowed down your choices to a few agencies that you feel are the best available, let your parents make the final choice. After all, the agency will be coming into their home to help them. If their personalities don't mesh, you haven't made any progress in helping them.

Bed Safety in the Elderly :  (2005)

Few if any tasks as a caregiver needs to be as done responsibly and efficiently as does helping your loved one in and out of bed. Establishing a ritual that you and your elderly loved one can follow will ensure the best possible care. Depending upon your loved one’s flexibility and maneuverability, you may or may not be their sole means of movement in and out of bed. Here are some helpful hints to think about as you tend to your loved one’s need for more help in and out of bed.

· If they are better suited to be rolled off the bed, make sure they are close to the edge of the bed and lying on their backs. From this position you can slowly position their knees off the side of the bed so their feet can hang off and they can best be in a position to start walking or be pulled up. The same conditions apply when placing them back in bed, only in reverse as they are gently placed on their back and then they can roll into a comfortable position on the bed itself.

· Depending on their flexibility, have them lie on their back and slowly move their body to the side of the bed nearest you. Then have them put their arms straight out at which time you pull them up and position their feet towards the edge of the bed. With their arms now at their side on the bed, they can push off from the bed with their hands applying pressure to the bed. The position is not as easy when placing them in the bed, and they need to have some upper extremity function in order to lean to one side and then onto their back, while you place their feet in the bed.

· Do not get angered easily at your loved one, rather be calm and simply support them if they are having difficulty, and NEVER criticize them.

· Make sure they are not likely to try and get up without assistance, as they could easily injure themselves.

· Have a plan in place ahead of time if they are likely to get up at night to use the bathroom and require your assistance with getting in and out of bed.

· Never become too aggressive and try to forcefully pick up your loved one, as you could easily bruise or hurt their arms and legs.

· Make sure they have a mattress that best fits their needs. For instance, a water bed is not advised for someone who has difficulty getting up out of bed, rather a mattress designed for back support can help a senior’s movements.

· If their movement is restricted, a motorized bed that reduces stress on their backs by raising and lowering on its own may be a wise idea.

· If the senior is unable to put weight on their arms, bed rails may work to provide a sense of strength and reinforcement in getting up and down.

· Always be upfront and instruct the loved one of your next move so they are not surprised when you go to move them in and out of bed.

Professional caregivers: (2005) The Caregiving Role: A Meaningful Quality of Life

What is it like to be a Caregiver? Your clients and their loved ones probably never expected to be caring for a person who is sick or has a disability. As professional Caregivers, we need to ensure a meaningful quality of life for our clients, the care recipient, and ourselves. Just as the care recipient has special needs, so does the professional. Job security with appropriate pay and benefits contribute to a positive professional self image. People who are appropriately compensated and trained are better workers.

Respect by clients is another aspect of this issue. Too often people who need our services do not realize that we are trying to help them do what is necessary to maintain or achieve their independence. It is our responsibility to help our clients understand our roles and empower them to be good consumers of our services.

Professional Caregivers must also serve as advocates for our clients. We must work together (with our clients) to get public and private agencies to be more responsive to the needs and concerns of people who need our services. The professional Caregiver and care recipient need to work with each other in a respectful relationship. The care recipient and their families need to understand the role of the professional intruding in their lives.

How do we accomplish this goal? First, we must advocate for better conditions for ourselves and our clients. Second, schools need to teach human service workers how to effectively work with people who have special needs. Agencies need to reinforce this training with in-services and ongoing supervision. Third, the government needs to be responsive to the concerns