Emotional Relationships and Dementia

Alzheimer's and other dementias slowly rob an individual of the power of emotional regulation. Roles as parent or spouse change irreversibly and you, the caregiver, are quite likely left with feelings of loneliness, helplessness, and betrayal. Grieving after death is accepted as natural; grieving during painful cognitive decline is often not realized as a natural part of losing one we love over months and years. Anger and denial may fill the void of a diminished relationship; blame and depression may also result. The happy retirement disappears as full-time caregiving fills your life.
And then, of course, guilt waltzes in to destroy the last shreds of confidence. "If I had only been kinder, more patient, more understanding, more..." Often you cannot hold these behaviors accountable because this frustrating loss is so long, debilitating, and devastating. A support group can help; a counselor can ease pain; good friends (who listen and do not advise) can make a difference as tough decisions must be made. Should this surgery take place? Would Dad be happier in a daycare setting instead of home alone? Would Mom prefer long-term care over the tangles and fights that currently ensue?
As for the caregiver, there is life beyond and after Alzheimer's and other dementias. There are assistance programs and ideas for your future available through family, friends, support groups, and the Alzheimer's Association. Do not be afraid to seek assistance and to receive support.

Adding to Your Coping Portfolio

Patience can wear thin when caring for someone with Alzheimer's disease or other dementias. It is important to remember that your loved one is doing the best he or she can while living with confusion and disorientation. Although it may seem like some of the troublesome behaviors are intentional - just to get your goat - these are rarely on purpose. You must just grin, take a deep breath, and become realistic with expectations. Much of these strange occurrences are simply out of your loved one's control. They seem to just pop up out of the blue.
Think about it. Imagine forgetting where you are going, where you have been, and why you considered either. Easy tasks can become insurmountable - getting dressed, preparing a bowl of cereal, using gadgets like microwaves and washing machine. Think of the insecurity, the emotional stress. In fact, sometimes if you watch carefully, you will note that some of your loved one's actions are reactions to your attitude and demeanor.
And so it is you, the caregiver, who must change. As abilities become limited, you'll need to alter your expectations and reactions. A routine can help. Sameness provides security. Get up at the same time, have clothes pre-laid out for easy access and dressing, have simple selections for meals. Make tasks simple. Instead of, "Here. Get dressed!", hand out items in the right order for getting dressed and in the correct orientation. If, even through the best planning, the socks are forgotten or the shirt is on backward, live with it for today and avoid confrontation or anger. Tomorrow gives you another chance.

How to Cope with Alzheimer's Disease

     Alzheimer's is a progressive disease with no reversal, no prevention, and no cure. With those horrible words being read, you can now focus on the future. That is one of the greatest challenges of facing such a terrible disease. You want to be certain - or as certain as possible - that your diagnosis or the diagnosis of a loved one is correct. Sometimes things like a UTI or a contra-indication from a prescription can create behaviors similar to dementia. Who ever thought that a urinary infection would be a relief? But we know that that is far better than hearing the words, "Alzheimer's disease".
     The process of Alzheimer's disease is unpredictable. While functional abilities begin to fade, there will be moments when everything seems just fine. The forgetfulness appears as a bump in the road. Although change in function and behavior are inevitable as the disease progresses, the timeline is unpredictable. The important thing to focus on is changes that present potential danger (driving or leaving a stove burner on high), wandering into unknown/unsafe places, or becoming violent. These may force you to think about getting additional assistance and no longer living alone.
     But there are many things that someone with Alzheimer's can still do during these slipping away stages: take a walk, help with daily chores, travel short distances with the family, play simple games, and definitely laugh and feel love. Learning to cope with decline is essential.