Alzheimers Caregiving

Taking care of the caregiver

Dawn Mulligan, Long Island Alzheimer's Association

Knowledge is power, so educate itself about the course of the disease, the symptoms and behaviors that are common, the treatment options and services that are available to both person with Alzheimers and the caregiver. National and local organizations and local libraries can provide educational materials and resources.

Implement financial and legal planning as early as possible. Measures should be taken to preserve assets, plan for long-term care, discuss end of life wishes and prepare legal documents. An elder law attorney, who has experience handling these matters, should be consulted to insure that documents in estate planning are executed correctly.

Set realistic expectations for yourself and the patient. Adjust your expectations of the patient to coincide with their abilities and the situation as it is today. This will relieve some of the stress and frustration and help you find meaningful activities for your loved one. Adjust your expectations of yourself- you cannot do it all. Learn to prioritize and don't be too critical of yourself or your loved one.

Seek assistance. Once again, you cannot do it all. Request help with caregiving tasks from family, friends, neighbors and professionals, such as geriatric care managers, home care agencies or day-care programs. Lack of communication can be the source of stress and strain. Clearly state what help is needed- don't assume that others won't know what is required.

Give yourself a break. Even the most dedicated worker needs an occasional rest, so give yourself a break, whether it's for an hour, overnight or for a week. Respite care can be obtained by having a friend or other member of the family give help or by enrolling the person with Alzheimers into a day-care program or paying an agency to provide companion services. Some nursing homes offer overnight or week long respite services. It is also important for the caregiver to eat right, exercise and get enough rest. If you do not take care of yourself, you'll not be able to care for someone else.

Join a support group. Support groups allow members to share their feelings and concerns and provide emotional support to one another, with valuable suggestions and information often being exchanged. Groups are usually sponsored by hospitals, nursing homes, social service agencies and of organizations and are usually free.

Think and speak positively. Say what you can do, not what you can't do. Focus on today rather than the past or the future. Try to enjoy the here and now by creating pleasurable moments and memories- activities which can be mutually enjoyed by your and your loved one.

Let off steam in healthy ways. Exercise and take a long walk. Talk with a friend, clergy member or social worker about your feelings and experiences. Draw or paint as a way to release anger or frustration. Keep a journal or diary to write about your feelings- good or bad. Writing things down may also help you solve problems.

Maintain a sense of humor and laugh. Providing good care involves time to make light of life's challenges. Laughing feels good and is actually good for your health. Watching a comedy movie or television program, sharing a funny story or laughing with the loved one can help protect you from the stress and strain of caregiving.

Dealing with Alzheimers is challenging and can seem overwhelming at times, but it is manageable. If you approach the situation with good information, the foresight to ask for help and a sense of humor, you'll be better able to cope with the changes and challenges to come.

ALZHEIMERS and CAREGIVING: (1999) The average lifetime with Alzheimers is 8 to 10 years. 75% of the caregivers are women. The emotional strain is enormous. Per the National Institute of Health, when someone falls ill, about 75% of the primary caregivers are females relatives. And while they are called upon to provide care for a dying person, when they die, they must significantly rely more on paid help (probably because fewer close relatives may still be alive- obviously including their husbands). About 15% who die from cancer have unmet needs versus about 23% that die from other causes.

Long Distance Caregiver: (SF Alzheimers Association 2001)

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.

Cognitive Training (Alice Dembner 2003) Mental decline may, in some cases, be reversible. Mental exercises can improve performance on memory, reasoning and understanding complex topics. A five week program involving computer and pencil and paper training was equivalent of reversing the typical decline over 7 to 14 years. . \Scientists suggest that anyone wanting to stay sharp can stretch the brain suing puzzles, classes in new subjects., etc.The brain does lose cells as people get older, but it also can grow new ones and add new connections. Good nutrition also help as do multivitamins. Researchers say that about 40% of those 65 and older have some memory impairment due to age. Two years after the initial training, 73% tested better on speed, 55% on reasoning and 40% on memory.

Caregiving: 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.

Caring for Someone with Alzheimer's

Home for the Holidays, by: Janice Wallace

Many of us live far away from our families. The holidays are times when we reconnect with our loved ones. Holidays are an opportunity to take an objective look at how the seniors in our families are coping. Take time to notice if things have changed. Your visit may reveal that your frequent phone calls are not giving you a complete picture of your loved ones daily life.

Use the following questions as a guide. Determine if there have been any significant changes in their abilities and environment since your last visit.

Is your family member clean and properly dressed?

Has he experienced any significant change in weight? (up or down)

How is her balance? Is she walking well? If the home has stairs, can she navigate the stairs safely?

Observe closely to determine if your family member has experienced changes to his hearing, sight or speech.

How is her energy level?

How is his short term memory? Can he perform daily tasks? Does he ask the same questions over and over?

When did she last visit the doctor?

Take a careful look at your family member's environment.

Is the home neat, clean and well maintained?

Are there obvious hazards in the house that need to be fixed such as loose throw rugs, excessive clutter or low lighting?

Should grab bars be installed in the bathroom?

How safe is the neighborhood?

Are services such as grocery stores, banks, and medical offices easy to access?

If the person drives, take a ride with them during the day and at night. How is his driving? Does he see and respond appropriately to changes in traffic, road hazards and pedestrians?

What is your family member's average day like? Does he have opportunities to socialize?

If your loved one is caring for another family member, is he/she getting respite from care giving and receiving emotional support?

If your observations lead to concerns, you need to create an action plan. If the situation is unsafe or the person is at risk, immediate action will be required. In most cases you have some time to begin making changes and providing resources to your loved one. What are your next steps?

Find a quiet, relaxed time to check in with your loved one. What does he/she see as the biggest challenges or concerns for daily living?

In a calm manner, share 2-3 of your major concerns with your family member. You may meet with resistance or denial. Try not to let the conversation escalate emotionally. Don't give into the temptation to share more than 2-3 of your concerns.

Brainstorm with your loved one and other family members about possible solutions. Offer to research and bring information back to the family.

Many times you may only get to step 1 and 2. This is ok. Communicating is like gardening. It takes patience. You have just planted some seeds for the future.

Plan a follow up visit to check on your family member or schedule calls to continue the conversation.

If possible, enlist the help of neighbors/friends/relatives to check on your loved one and keep you informed.

Consider hiring a geriatric care manager who can assess your family member's condition and provide regular status reports on his/her situation. Care managers can also recommend elder care resources.

Follow the proactive steps I recommend in the next paragraph to learn about elder care resources where your family member lives.

If your family member is doing fine, this is your chance to be proactive. While you are in the area, take time to visit local elder care resource centers. Gather information that you may need for the future. Use the phone book to identify additional resources. Gather contact information for your family member's doctor and neighbors. Put together a list of medications he is taking. Plan future conversations to understand her wishes if she becomes ill or incapacitated. Make a plan to keep the lines of communication open.

Leaving Your Loved One Home Alone If it has not already been debated, the possibility of leaving your loved one alone in your home is certainly bound to occur. You will no doubt have many questions to ponder as you decide upon the prospects of leaving them such as, will they attempt to go outside?, will they hurt themselves?, or will they need emergency assistance? This difficult question involves you the caregiver, and your loved one, who was once an independent person. The both of you will usually disagree with the situation, as it is normal for caregivers to feel their loved one cannot be alone, while they believe they are fine and healthy enough to be alone for how ever long. Asking other family members, health care professionals, and other caregivers for advice will go a long way to determining the likelihood of their safety being jeopardized when left alone. Some other important questions to consider before leaving them alone for the first time, or if you are questioning whether they are able to stay alone any longer include:

Are they capable of calling 911 or neighbors if an emergency occurs?

Can they distinguish friends and family from strangers if they are faced with answering the door or having someone enter the home?

If they are hungry, can they prepare and eat a meal without your assistance?

Is it easy for them to use the bathroom without your help, or do they require aid every time. Are there any other plans in place if they are not able to go to the bathroom without your help?

How does their behavior and temperament change from when you leave to when you return? Do they appear angered or scared at the first sign of you leaving the house?

In case of emergency are they able to leave the home and seek shelter outside?

Are they aware of smoke alarms and unusual noises, which may trigger danger, or are they likely to overlook all such noises?

Do they suffer from Alzheimer’s or dementia, and if so are they likely to wander off and get lost easily?

Are they routinely experiencing emergencies, which places their life in jeopardy? Do they suffer from epilepsy, or shortness of breath that may need to be monitored all the time?

Do they get lonely easily and feel deserted at the slightest moment of your absence?

Can they be destructive at times of stress and sickness and cause damage to themselves and your home in the process?

Depending on your answers to these questions, your decision on the possibility of leaving your loved one home alone should be clearer. If your answers gave you a sense of dissatisfaction, it is in your best interest to find assistance through a family member or home care aide who can stay with them while you are gone. But if the answers to the questions were comforting, you may still be able to leave your loved one alone, although you must regularly check up on their progress to ensure their safety in the future. This is certainly not an easy situation for all involved, but understand your own feelings and be strong-minded when making the most sensible and safe decision for all involved.

Stepping Into The Leadership Role, by Daniel Kuhn, LCSW, MSW Since the person with AD no longer possesses the mental skills to be completely independent, a special brand of leadership is called for. At least one person must assume overall authority for ensuring the well-being of the person with AD but it is best to include others too if at all possible. Much work is involved in addressing basic physical needs like food and shelter as well as the psychological and social needs discussed in the previous chapter. You need not be afraid of taking on this important leadership role or a major part of it, although it may feel awkward at first. The person with AD needs your help. If possible, it is best to share this role with someone else or at least to delegate some of the responsibilities to others who are willing to help and support your efforts.

Whether the person with AD is your spouse, parent, sibling, or in-law, a shift in the balance of power must occur in your relationship. You may feel uncomfortable at first with the term power. Yet the dynamics of power, influence, and authority exist in every relationship and can be used constructively. The change in power balance derives from the fact that the person with AD needs protection from the risks posed by the disease and can no longer meet her or his needs alone. Because of impairment in memory, thinking, or other brain functions, the person with AD no longer has intellectual equality with others—an unfortunate reality. As one person’s role in the relationship changes and personal control diminishes, the other person’s role must change in corresponding ways.

Any person giving direction and assuming greater responsibility in a relationship is exercising more power than the other person. This does not mean, however, that the dignity of the person with AD should be diminished or ignored. On the contrary, preserving his or her dignity becomes the utmost priority. In taking leadership, your job is not to dominate the life of the person with AD, but to help minimize the affected person’s disabilities and maximize his or her remaining abilities. This implies not only caring for the person with AD but also caring about the person. Ultimately, the leadership role is about meeting the needs of the other person.

It takes self-confidence to assume leadership on behalf of another adult. It also takes extraordinary empathy, patience, and understanding to exercise this powerful role in a loving way. Despite the inequality of the relationship, the self-esteem of the person with AD must be upheld. Otherwise, feelings of embarrassment, depression, and frustration may arise, and conflicts may develop. In Counting on Kindness: The Dilemmas of Dependency, Wendy Lustbader describes the finesse required of the leader: “The best assistance is that which is unobtrusive. Helpers who quietly get things done, rather than announcing their efforts, leave a dependent person’s pride intact. The indebtedness position is not emphasized, and no mention is made of special accommodations. The fact of helplessness then recedes into the background, where it can reside without harming the person’s self-esteem.” Sensitivity to the feelings of the person being helped can lead to mutual understanding and cooperation.

Knowing how and when to help out completely, partially, or not at all also requires you to think on your feet. Sometimes it may seem more efficient for you to take over a task completely. At the same time, by doing so you may be ignoring the remaining abilities of someone with AD. You may reason, “I can fix a meal in half the time it takes him so I might as well do it by myself,” even though the person with AD may derive satisfaction from playing a part in meal preparation. At the other extreme, you may assume that a certain task can be done independently, causing the person with AD to struggle needlessly. You may think, “She can still manage paying those bills by herself” when, in fact, she may silently wish for relief from this stressful work. Understanding the different levels of dependence and independence requires much insight into the needs and preferences of the affected person. At the same time, you cannot overlook the limits on your own time, energy, and patience. Balancing all these practical and personal needs can be a real juggling act.

A good metaphor for the changing relationship between you and the person with AD is the relationship between two ballroom dancers. When a couple dances, the roles of leader and follower are carefully orchestrated. A good leader dances in a way that enables the follower to be led almost effortlessly. The leader’s cues may be so subtle that the follower may not appear to be led at all. The couple dances together gracefully as each partner cooperates in playing his or her part. In your relationship with a person with AD, you may be called on to change roles from follower to leader.

Another thing about your relationship is that you can no longer take for granted that the person with AD will remember the proper steps. You must now take a more active role in the dance. You must learn when to step in and when to step back. Fluctuations in symptoms will often make it hard for you to gauge when to step in to offer help and when to step back and refrain from helping. In a newspaper article, Jean Baron describes this problem in relation to her husband with AD: “Perhaps hardest is the contradiction between his need for independence and his need for help with some things. This leads him to accuse me, on the one hand, of treating him like a child and, on the other of not being sensitive to his needs.”

It may take a long time—months or even years—for you to learn a new set of “mental gymnastics,” even though you may know that a different way of relating is now required. The transition to your new leadership role can evolve over time. In its early stages, the disease does not require that you assume a full-time position as a caregiver. On a practical and emotional level, it is important to keep in mind the limits of your leadership role at this stage. One man shared his thoughts with me about his limited but central role during the early stage of his wife’s disease: “I purposely don’t think of myself as a ‘caregiver,’ as the word implies a total dependence on her part. This may be a matter of semantics, but I try to differentiate between what she needs for me to do for her and what she can do for herself. So far, the latter far outweighs the former. When that switch takes place, I guess I will have become a caregiver.”

Fortunately, since AD progresses very slowly, in most cases you can make the shift in your role as leader bit by bit. The sooner the shift in roles takes place, however, the better it will be for the person with AD. If you are assertive without being domineering, helpful without being overbearing, and kind without being patronizing, then the person with the disease is likely to respond positively to your good intentions.

Since You Care Guide: Alzheimer's Disease - Caregiving Challenges, Free to the Public from the MetLife Mature Market Institute; Offers Information and Resources Specific to Families Affected by Alzheimer's. This is free available free to the public, has a wealth of information for those caring for a loved one with Alzheimer's disease. The 27-page booklet contains advice and guidance for the challenges specific to Alzheimer's caregivers and offers explanations, instructions, resources and two helpful checklists, one with safety items and another for identifying and locating needed services and resources. Since You Care: Alzheimer's Disease - Caregiving Challenges, was prepared in cooperation with the National Alliance for Caregiving.

Managing challenging behaviour in dementia (2006)