Alzheimer's disease · Assisted living · Behavior · Caregiver · Memories

Visits / October 22, 2006

I don’t particularly enjoy visiting with my mother in the nursing home, but I dislike NOT seeing her even more. I worried for awhile that my presence was having a negative effect on her behavior, until I realized that there is no resolution to that particular worry. Maybe it is, maybe it isn’t–in the end I have to do what I believe is best. The staff have been kind to us, especially after my mother gets upset upon realizing that I am not taking her home on that particular day. They tell me that she forgets her anger soon after I leave, but I don’t think that’s always true. Today she was in an agitated, confused state, but she remembered that my sister had visited her earlier and then had gone home without her. And now I was about to do the same.

I hate having to figure out ahead of time how to make my exit. Today she argued and pleaded with me to take her home. I began to debate her, which is a sure way to escalate her agitation–usually I stick to my catchphrase: “You’ve got to stay here until you feel better”–and today she wouldn’t be distracted. I finally picked up my coat and said: “Mom, we’re both upset. I’m going home now but I’ll be back tomorrow. Don’t be mad at me, I’m doing my best.” “I’m not mad,” she muttered as I kissed her goodbye.

In fact, I probably will be taking her home on Thursday. We were told yesterday that she had reached maximum improvement and would be discharged in a week. Nothing has opened up at the AL facility, so I’m trying to figure out how to handle this ragged turn in the transition. I can’t help but expect that it will be harder to move her into assisted living once she’s been back at home, but I also know that this disease often defies expectations. The solution, I know, is for me to be firm, to believe that such a move will be in her best interest and to act upon this. Right. I’ll do that.

Basically, it’s an act of faith and exhaustion, mostly the latter. Over the past three weeks I’ve seen another level of the disease, a more complex confusion and a more rigid compulsion. My mother clasps delusions of crowds who are about to visit her, as well as the conviction that she has been left all alone night after night. She tires the staff with her wandering. I’ve seen her take off suddenly, setting off her body alarm–she wouldn’t look at me, she just plowed ahead, determined to GO. I have to remind myself that the various parts of her brain are no longer working together–some may have shut down and others are overcompensating–but the unpredictability of this deterioration requires more than one caregiver. I just can’t do it by myself.

Feeling this uneasiness around my own mother is extremely disorienting. Having such a fundamental relationship not only shift, but change shape, challenges so much of my own identity. I look at old pictures of my mother and try to remember what she was like. I hope that this present uneasiness does not affect my own memories of my mother. I don’t want to lose them–but I’m so afraid that I will.

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