When Frank’s mom was diagnosed with Alzheimer’s disease, I think each one of the family members had the same reaction at first – grief. However, over time we dealt with her illness in different ways. Frank’s sister and brother quickly moved into the denial stage and remained there until their mother’s death. Frank himself stayed in the grief phase for quite a while, but then moved on to acceptance. “Acceptance” didn’t mean, of course, that he gave up all hope – he still longed to see moments of lucidity in his mother.
If I had any advice to others who face taking care of a loved one with Alzheimer’s, it would be to first seek the support of others who have gone through or are going through this same devastation. The Alzheimer’s Association is a wonderful place to start – or visit your doctor or geriatric hospital. Listen to as many people as you can and form your approach from there.
Frank and I deliberately chose to use humor as much as possible. While it might not work for everyone, for us it helped relieve the overwhelming sense of helplessness we often felt. My goal was to keep his mother happy and not agitated, and I saw no harm in agreeing to some of her most outlandish comments or suggestions, just to keep her calm (as long as she was physically safe, of course). Agreeing with her when she was upset seemed to help ease her agitation. Why try to win an argument that will never have a winner? A case in point – Frank’s mom loved to drink wine, but since she was diabetic and her Alzheimer’s had progressed to the point that she couldn’t control her sugar levels, wine was out of the question. When she asked for wine, I didn’t argue. Instead, since she could no longer read, I served her sparkling apple cider or something similar. As long as it came out of a wine-shaped bottle, she was happy.
One more piece of advice: the family must make sure that the primary caregiver has plenty of support and the opportunity to get away from the situation as often as possible. Typically an elderly spouse has the role of primary caregiver; often, he or she – acting as a parent – will protect the rest of the family from knowing what a truly difficult challenge caregiving is. I think Frank’s dad sometimes felt as if he were a prisoner in his own home – the doors had to be locked at all times (and preferably with locks out of the patient’s reach). Because most Alzheimer’s patients don’t have a true concept of time, caregivers often find it difficult to rest at night. We think Frank’s dad’s taking care of his wife for two years at home contributed to his death as well – he simply wore himself out physically and emotionally. -Norma
Wisdom for the Caregiver (from Yvonne Jonker)
The above advice is from The Compassionate Congregation, pages 44-47.