Alzheimers Care

QUESTION: Alzheimer’s Care - How can I survive being a caregiver to an Alzheimer’s patient?

ANSWER:

Alzheimer’s disease is one of the cruelest diseases that can afflict an older person. With most other diseases, a person can understand what is wrong with him and participate in his own care. That is not the case with Alzheimer’s. A sick mind does not have the ability to comprehend that it is sick.

The Alzheimer’s Disease Education and Referral organization lists seven early warning signs of Alzheimer’s.
  • Asking the same question over and over again.
  • Repeating the same story, word for word, again and again.
  • Forgetting how to cook, or how to make repairs, or how to play cards -- activities that were previously done with ease and regularity.
  • Losing one’s ability to pay bills or balance one’s checkbook.
  • Getting lost in familiar surroundings, or misplacing household objects.
  • Neglecting to bathe, or wearing the same clothes over and over while insisting that they are clean.
  • Relying on someone else, such as a spouse, to make decisions or to answer questions they previously would have handled themselves.
When one or more of these signs become evident, it is time for a thorough check-up with a neurologist.

One of the early signs in my mother when she got Alzheimer’s disease was that she got lost in her neighborhood grocery store, which was just across the street from her. She came out of the store, not knowing where she was or what to do next. It took her quite a while to re-orient herself.

As Alzheimer’s progresses, plaque accumulates in the brain, tangling up the neurons and dendrites. Gradually brain cells die. In other parts of the body when old cells die, new ones can be formed. That is not the case with brain cells. As brain cells die, at first the person will experience confusion, as was the case when my mother did not know where she was in her neighborhood grocery store. Later, that can turn into hallucinations.

My mother began to harbor an unreasonable fear that the next door neighbors would rob her, that someone would steal her social security check out of her mailbox, or that someone would break into her house to harm her. She even called the police with these unwarranted complaints.

It was at that point that I decided she couldn’t live by herself any more. I took her to live with us. I wanted very much for her to understand that what I was doing was best for her. But not understanding that she was sick. She perceived me as being cruel to have removed her from her home. I tried to explain things to her, things the doctor had said, things she had said and done while still in her own home, but she didn’t understand.

Her confusion and hallucinations continued. At one point she insisted there was a man sitting out in my car during the day reading a newspaper. She even went out with a broom to chase him away. Of course the car was empty. Then she was convinced someone was playing a trick on her. Another time she insisted that my long-dead grandmother had come to visit me. She didn’t understand why my grandmother only sat and had coffee with me, but didn’t come into her room to visit with her as well.

The burden of caring for my mom became too great for me. We decided that the best option for her would be a nursing home. Again, she didn’t understand.

During this time, I needed support. I am so grateful to my pastor who helped me to understand what I am now telling you: that a sick mind is not capable of understanding that it is sick. He helped me to see that deep inside she was still my mother just as she had always been. When she was talking hatefully to me, I was to remember that it was the disease talking, not the mother that I once knew.

While providing Alzheimer’s care, it is important to remember these things:
  • Alzheimer’s patients don’t understand what is happening to them.
  • Your parent or the patient you are taking care of might speak negatively of you. There were times when my mother convinced her nursing home visitors that I was cruel. Following my mother’s death, a lady called me to apologize. The lady’s husband was growing demented. She apologized for thinking badly of me. She was beginning to understand some of what I was going through.
  • Take time to grieve. You are gradually losing your parent. Take time to care for yourself.
  • Your friends, your patient’s friends, and your family may misunderstand you or criticize you. Keep conversation open and loving. Make caregiving a team effort.
  • Remember that Alzheimer’s is a cruel disease because it robs a person of reason and dignity. It can also be cruel to the caregiver, in that the sick person is not capable of seeing that what you are doing is for the best.
  • Seek help -- both in your caregiving responsibilities and emotional and spiritual counseling for yourself. This will become a valuable part of your journey.
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