It is so difficult to deal with the everyday issues of Alzheimer's disease that it becomes harder each day to find something positive to keep our spirits up. Our caregiver groups' spouses are either maintaining their plateaus or declining. Our families are either making improbable suggestions or are absent altogether. The problems facing the new members are overwhelming to them and we do feel good when we are able to help with our presence and experience, but the never-ending cycle of deterioration due to this devastating life-limiting, personality-changing illness endures.
My cousin who is dying from metastasized small tumor lung cancer is traveling each day through the same process of dementia, at age 61, that our spouses have been traveling at their slow pace for the past six or seven years. First day, he lost his short term memory although he could remember everything before the day two weeks ago that the cancer spread to his brain. The next day, most long term memory was gone. On the third day, he began to hallucinate that "a man out there has an atomic bomb, but don't worry I have one, too." He was trying to make sense, I think, of the radiation treatment prescribed. By the following day, he did not know where he was or what the bathroom was for. "Why are people making me do things I don't want to do?" he asked.Since the fifth day he has been in diapers, jumping up from a sound sleep and walking out of his room into the corridor. A guard had to be hired to stay in his room. Since then, he cannot feed himself, his right hand somehow cannot find its way to his mouth. Today he sleeps much of the time, needs to be fed and his right arm seems to be hanging uncontrolled at his side.
When our loved ones are old, we feel a bit comforted they have had a full life. When fronto-temporal or other dementia hits before age 65 the loss of the still-living spouse or parent is so much harder to understand and our mixed emotions pain us caregivers so much. We want our loved ones to receive the best care possible, we feel the obligation to maintain their dignity and comfort but we also wish for an end to their suffering and our own.