Phyllis

After 50 years of sharing a bed with my wife, she became incontinent and even with the diapers and rubber sheets, our first “separation” occurred when I moved her over to the spare bedroom. At this point, Phyllis started to pace the house and would hide things under her mattress. As is typical with Alzheimer's, Phyllis also started “sundowners” which are usually afternoon times of agitation, anger and even sometimes hitting. Initially, these "sundowners" took me by surprise, even though I was warned by my reading. I would see a complete transformation of my well-tempered wife, switch into an anger-filled Jekyll and Hyde for an hour or more. This is where patience really comes to the fore. A woman who told you minutes before that she “loved you more than anything in the world,” would suddenly turn on you, calling you “disgusting,” insulting anyone else in the room sometimes with language I had never heard from her mouth. At this time the medical profession cannot identify the cause for these chemical changes.

You cannot talk them down from the sundowners! Nor can you aggressively react to the attacks on yourself. You can try to distract with some desired object or discussion of a family member. But generally all you can do is take it on the chin and try to prevent her from hurting someone when she would try to strike them. With her contorted face like some scene from the Exorcist, she would direct hate phrases at everyone. Obviously, at these times, anger and logic have no place in the discussion and argument should never be engaged. It was clear to me that the person I had known and loved all these years was no longer present during these sieges. I was thankful that I had read so much about the disease that I realized, although it’s atypical for her personality, it’s not unusual for Alzheimer’s disease patients. However, at this juncture, I began to realize we were either at the end of Stage 1 and well into Stage 2. There are no firm boundaries or demarcations that definitively define the stages of Alzheimer's.

Many books I've read and movies I have seen (e.g., Still Alice, Glen Campbell) seem to depict early Alzheimer’s disease and genuinely describe the disease up to a point, but erroneously leave us with a false sense of hope. Couples walking hand-in-hand toward the setting sun while dramatic music and the credits start to roll. I would hope to give you a clearer, but greater insight into the late phase and end-of-life expectations and alternatives. But unless they come up with a miraculous cure for this disease in the next few years, there are really no reprieves for the patient's life and the toll on his or her family as described within. However, for the loving caregiver, if there are any positives to come out of this dreadful disease, I found you quickly learn a lot about yourself and how you cope throughout this protracted ordeal and the incredible amount of patience required. You may also learn who your real friends are, and perhaps a greater understanding of what matters in your life plus a perspective on your own prevailing values and how quickly you have to shift gears just to deal with each day and the surprises it can bring.

Just as AA stipulates, your first step should be to admit there is a power greater than yourself. This will be helpful during the ordeal to come, whether you are care receiver or caregiver. This power should not be used for taking out your rage and blame, but as a companion you seek out for consultation, guidance, feedback and prayer.