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The Alzheimer Caregiver - take care of yourself

  • Note: links and/or phone numbers to various resources pertaining to the following information can be found by clicking here.

    • Alzheimer's - it's a family affair

    The affects of Alzheimer's disease are not limited to the person suffering. The caregiver and other involved family members are affected too. Watching a family member fade away and become totally dependent for care can be heart wrenching. It can also be a great source of stress and exhaustion. An effective treatment program will address the needs of the Alzheimer's sufferer, the primary caregiver and other family members with the goal of creating a safe and supportive home environment. 

    Learn all you can

    As a caregiver, you may benefit from the education and training resources available in the community. Classes can provide the necessary tools for managing the needs of the Alzheimer's sufferer and make it possible to keep them in the home environment longer. There are support groups in the community and on the internet where caregivers can come together to talk and share information. What you will find as you participate in training and support groups is that you are not alone and that many of the questions you may have can be answered. This site has information that can be useful to you, or you may choose to visit some of the sites on our "links" page.

    Understand the different stages of the disease

    Learn all that you can about the disease and the different stages of it. Realize that the person's behavorial changes are coming from the changes going on in the brain. It may be difficult at times, especially if the person is exhibiting negative behavior, but if you can learn to de-personalize the behavior and personalize your love and care, you can get through this very trying period. In other words, the bad behavior that the Alzheimer's sufferer is showing is a result of the disease, not an attempt to make your life miserable.

    Learning about the various stages of the disease will help you recognize some of the symptoms. Changes will occur continually and some symptoms may overlap. It will become harder for the person with AD to continue to do the things they've always done. Their role in the family will change. A once responsible, hardworking father may become dependent and needy. A mother who once kept an immaculate house may be messy, even with her appearance. You may have to drive her everywhere, because she may get lost otherwise. You may have to cut up her food, because she no longer remembers how. If the person was once in charge of important household activities, like finances, you may have to take over this responsibility. However, avoid taking away chores and activities prematurely. You want to avoid making the person with AD feel incompetent if they are still able to do some things on their own. Remember to respect their dignity and individuality. 

    There will be legal and financial issues

    Alzheimer's disease can take up to 20 years to run its course. In the meantime, the expense of maintenance will increase. You will need to be knowledgeable about insurance coverage and available financial assistance. Look closely at health, disability and long-term care policies. Seek help if you don't understand. Health insurance counseling often is available for free. To locate help in your community, call the Eldercare Locator at (800) 677-1116 or HICAP at (800) 434-0222. Free and low cost legal services are available to seniors. Such services may be necessary to ensure that the responsible caregiver has the proper authority and access to make decisions and manage resources of the AD sufferer. 

    Ask for help

    As the disease progresses through its stages, you may find that you need help with some or all of the following: 

    Emotional support 
    Coping with the loss of the person you knew, the day-to-day
    demands of this disease, and feelings of isolation can take their toll.
    Depression and anxiety are common. Ask for help. Do not try to go it alone. There's no
    need to when there are resources available to assist you.  

    Needing a break
    Caregivers have to have time for themselves and for taking care of other
    living demands. Seek out help from friends, churches, senior centers or "respite care"
    programs. These programs will provide either a homecare worker or a drop off adult care
    facility for the AD sufferer and allow you to have some time to yourself. It's important
    to take periodic breaks for your own well-being. You are not deserting your loved one.
    You are merely taking the time to re-charge your own batteries so that you can continue
    on with your caregiving. If you find that your health is seriously affected by the demands
    of caregiving, you may need to consider long term care for your loved one. There is
    nothing to gain if both of you become ill.

    Safety
    You may discover that things might go better for you and the person
    suffering with AD if certain features of the home are modified. Perhaps it's
    time for a hand rail in the bath tub or a special alarm in the event the person
    wanders off. You can talk to the physician about assistive devices - special devices
    designed for people with various disabilities. In the case of wandering, register
    your loved one with the Alzheimer's Association Safe Return program and with the local
    police. You can never be too cautious about a wanderer. Their very life could depend
    on how quickly they are found.

    Long term care
    At some point, you may find that keeping your loved one at home
    is no longer possible. You may decide to look for long term care. Contact your state
    agencies for assistance. They can provide a list of state approved care facilities that
    specialize in patients with dementia. This decision may become especially necessary in
    late or end stage Alzheimer's.

    Hospice Care
    When the doctor determines that the end of life is near, the two of you may decide to
    investigate the available hospice services. Hospice services provide support for the final days.
    There may be visits from nurses and other support groups. Pain management is usually prescribed.
    Hospice organizations can help family members face the challenges of caring for a loved one at
    the end of life.

    Caregiver's Bill of Rights

    You may find yourself experiencing a range of emotions as you care for your loved one. All are normal and typical, afterall you are rising to a very tall task. Perhaps you see it as a labor of love, or maybe you resent being saddled with the bulk of responsibility. You may find yourself feeling one way one moment and feeling just the opposite at the next. At any rate, many have felt what you may come to feel. Joining a support group will help you see that you are not alone in your feelings. Such a group will, no doubt, offer tips and exercises for coping. If you find that what you feel is overwhelming and wearing you down, you may want to seek professional help. Don't be ashamed. Get the help that you need. In the meantime, consider the following:

    It is alright to: 

    Be angry. 
    Turn this energy into positive action. Clean closets, take a walk, talk with someone.
    Be frustrated.
    Stop the present activity, take a deep breath and begin a different activity.
    Take time alone.
    A favorite chair in a quiet room, a trip to the store or a few hours out with friends.
    Ask for help.
    Inquire of family, friends and local agencies about resource services. Most doctors' offices and clergy
    can make referrals.
    Trust your judgement.
    Relax
    you are doing the best you can.
    Recognize your limits.
    You are a valuable person. Take care of yourself, too!
    Make mistakes.
    No one is perfect. This is how we learn.
    Grieve.
    This is a normal response to a loss. You may be sad over the loss of the way things used to be.
    Laugh and love.
    It may seem out of place, but your capacity to feel is not gone and can occur unexpectedly.
    Hope.
    Tomorrow, the day may go smoother, a friend may call, a cure may be found.

    Caring for someone with Alzheimer's disease may be one of the most demanding challenges you will experience. Many debilitating diseases are. This doesn't mean that you will not experience joy, laughter and shared companionship. Knowledge, planning, gathering resources, and working closely with spiritual, social and medical personnel will aid you as you seek to provide a loving and supportive environment for your loved one.

    Caregiver main page

    Alzheimer's Home Page What is Alzheimer's Disease?  The Alzheimer's Diagnosis 
    What if you have Alzheimer's  Tips for early stage Alzheimer's   The Caregiver
    Legal considerations  Financial planning  Beware of fraudulent schemes 
    Treatments for Alzheimers  State and National resources  Personal Stories and Support Groups 
    Books on Alzheimer's Disease  Tennessee Commission on Aging Website