JOAN’S WEEKEND BLOG – JANURARY 28/29, 2012 –  A ROUGH WEEK; MORE ALZHEIMER LESSONS

It’s been another eventful week here in Dementia Land. Oh, how I could use some boredom. For those of you who have not read my post on the message boards, we had a repeat of November’s power outage with worse consequences this time than the last, for my AD husband AND myself. (Click the highlighted links for the details)

The shortened version is that my Independent Living Villa company paid my electric bill to the wrong account number; Florida Power and Light lied to the Villa business manager about there NOT being a Florida law to protect the disabled from power shut off; the meter man arrogantly told me it was my problem, not his, refused to talk to the Villa business manager, walked over to the meter, and shut off the electricity.

Having learned my lesson in November, when I stayed in the villa with our maintenance man’s “jerry rigged” cables supplying minimum electricity from the neighboring power boxes outside, I opted to check into a hotel at the Villa company’s expense. Sid had been stressed, hot, miserable, and upset in the house in November without the electricity, so I assumed – something one should never do, that he would be comfortable and less stressed in a cool hotel room with power.

I picked him up from Day Care, explained in the simplest of terms what had happened, and told him not to worry – I would handle everything (as if I don’t anyway). I took him home, packed up, and left for the hotel, which is 2 miles down the street. When I picked him up at Day Care; when we got into the house; while I was packing; when we got back into the car; when we settled into the hotel; and before we went to bed, he asked the same questions. “Whose fault is this? Will the electricity be on tomorrow? When can we go home?”

For two days and two nights, he asked the same questions, complained incessantly about his painful knees, back, and shoulders, obsessed over his bathroom habits, and whined like a two year old. He was so agitated that when the physical therapist came to the hotel to work with him, she took one look at him and remarked, “ A little out of sorts today, are we?”

As for me, it was not my proudest two days. Understanding that Alzheimer’s Disease was causing his behavior, did nothing to relieve my stress. My patience was frazzled. Yes, I committed a caregiver sin and yelled at him when he woke up on Friday morning and asked me if the power had been turned on. “THINK about it”, I screamed. “How would I KNOW that? I just WOKE UP!” Could I have felt any worse at my lapse in patience when he cried, and said he did not understand why I was upset with him?

This experience taught me three lessons. The first is that it does not matter whether we are home and miserable or in an A/C hotel with power, an upset in routine for an Alzheimer patient is an upset in routine. Period. When their regular schedule is disrupted, they become confused and frightened. They need assurance, not an Alzheimer Spouse yelling at them.

The second is that my husband is now fully ensconced into Alzheimer’s Disease. We have traveled past “Early Stage” junction, and are now on Highway South, heading straight toward the exit – time and distance unknown.

And the third is that I have completely passed over the bridge from wife to caregiver. When that transition became clear to me, I lay on the bed and cried. I am fully grieving the husband I loved, and vowing, once again, to be a more patient, compassionate, understanding caregiver. It’s not easy.

MESSAGE BOARD: Friday Notice/ A rough week; Alzheimer lessons learned

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