The Alzheimer's Support Network News, January 1999

Reaching Persons with Alzheimer's Disease Through Music

       by Mercedes Bern-Klug

        Center on Aging, University of Kansas Medical Center

     Let's look at the role of the caregiver. Making decisions for persons too incapacitated to aid in the decision-making process can be frightening. Many Alzheimer's disease caregivers find themselves in this position and have no one with whom to share this grave responsibility. Sadly, such caregivers frequently agonize over the decisions they have made. The range of concern is broad, that is, finances, disposal of property, and provisions for the day-to-day care of the Alzheimer patient. These are the problems that cause caregivers to question themselves the most and which invariably cause stress. The caregiver frequently has more distress when seeking advice from another individual. Other people may ask questions such as, "Are you really sure that's the best place for him or her to be?" which increases the caregiver's doubts. People who lack experience in caring for an Alzheimer's disease patient may not know this illness is not like other serious illnesses. Unfortunately, an experienced caregiver sometimes forgets this too.

     Remind yourselves of the following statements whenever you are worried and anxious as to whether or not your actions are appropriate.

• There are no perfect solutions regarding the problems caused by Alzheimer's disease and I should not keep questioning the action I took.
  

• If I had selected another course of action, I would have had doubts about the rightness of that action also.
  

• My choices have been, and continue to be, very limited due to circumstances not within my control.
  

• I did what seemed best at that particular time given the information I had. I cannot and should not expect more of myself than that.
  

• New Problems which develop are not necessarily related to how I have handled things.
  

• Many other Alzheimer's caregivers faced with similar problems have taken the same actions as I did.
  

     Coping with Alzheimer's disease or a related disorder does not have to be a lonely experience, although it is common to feel alone, to think that no one can understand what is happening to your life. Participating in a family support group can help, by giving you a chance to share your feeling with others who do understand because they too have a loved one with dementia. If you are a caregiver, you probably are aware that you will need help and support as the disease progresses. However, caregivers can easily become isolated with their patients because of the demands of caregiving, the forced changes in lifestyle, the loss of friends or the lack of family assistance. Your local family support group can help by giving you a chance to meet others who also are facing the caregiving struggle. Our support groups exist so that those who care for someone with dementia do not become "victims" of the disease themselves. We are here to help.

Courtesy Alzheimer's Association -- Tampa Chapter

Please click here to continue reading

Newsletter Index