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The Alzheimer's 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 is a family affair


    The affects of Alzheimer's disease (AD) are not limited to the person suffering, the caregiver and other involved family members are affected too. Watching a family member fade and become totally dependent for care can be heartwrenching. 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 its different stages. Realize that the sufferer's behavorial changes are coming from changes 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 displays 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 personal 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 the 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.  


    Needing a break. Caregivers must have time for themselves, as well as time for taking care of other
    living demands. Caregivers cannot neglect their own lives and continue to successfully care for others. 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 recharge your own batteries so that you can continue 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 handrail in the bathtub 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 a doctor determines that the end of life is near, the two of you may decide to
    investigate 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; after all, 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 that it is alright to:

    Feel angry. Turn this energy into positive action. Clean closets, take a walk, talk with someone.


    Feel 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 can help you refresh and recharge.


    Ask for help. Inquire of family, friends, and local agencies about resource services. Most doctors' offices and clergy can make referrals.


    Trust your judgement and relax. You are doing the best you can.


    Recognize your limits. You are a valuable person. Take care of yourself, too!


    Allow yourself to 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 ever experience. The same is true of many debilitating diseases. This doesn't mean that you will not experience joy, laughter, and shared companionship. Knowledge, planning and resource gathering, 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.