Many of us are caregivers to a person with Alzheimer’s. But we can never really know what it’s like to BE the person with Alzheimer’s.
To get a glimpse into the mind of a person suffering this condition is a rare insight.
This article was written by a friend for Michael Ellenbogen. A victim of early onset Alzheimer’s, Ellenbogen speaks out about his illness and how it has changed his life.
So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass, have become frustrating and difficult for me to perform.
I leave things lying around the house – not to be difficult, but because I have forgotten where they go, and I am also afraid that if they do get put away I will not remember where they were put.
I was once a very sociable person, but now I go to a happy affair only to be tortured by the noise and surrounding conversations because I am overwhelmed by the stimulus of sight and sound.
I don’t understand what people are saying; the words run together and they may as well be speaking a foreign language.
I can no longer write or speak like I used to. What you are reading now has been written by a friend of mine who helps me put my words onto paper.
My friends have become distant, and even when in their presence they will address my wife. Even when enquiring after me they rarely direct their questions to me.
This is heart-breaking for me, the fact that they feel they can no longer talk to me really saddens me.
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As his wife and now his caregiver I’ve always noted that Chris gets pleasure from simple things. One of these is old movies.
One of his favourites is Keys to the Kingdom, starring Gregory Peck. When Peck, a priest, gets to his mission in China, he finds that he has no parish members. He is told the people will only come if he gives them rice. Peck stoutly replies that he doesn’t want any ‘rice-Christians’ in his mission.
These days another pleasure for Chris is the bird feeder. We chose a little cedar model. Then came the choice of birdseed. It seemed expensive, but it was no mess and recommended, so we bought it.
I rigged the birdhouse up, put out the seed and waited.
The next day a single bird, brown and grey with some white markings, came and sat in the Japanese Maple next to the birdhouse. After a thorough visual examination, he finally landed and began to peck at the seed.
He left not long after, much to Chris’ disappointment. But later that day, Chris ventured out to the living room to have coffee. Marg, Marg! Come and see! he called.
Our ’Scout’ as we had dubbed him, had come back, bringing another with him. Together they dined.
The next day they returned, and this time another bird with orange markings trailed along. There was some fluffing of feathers and a bit of pushing and shoving at the trough, but Scout held his ground.
In the end, they all ate to their contentment, more birds joining in, some taking sunflower seeds or peanut halves back into the branches of the maple tree to break down and eat.
Chris watched all this with interest. It’s their hangout, he said proudly.
If I had wondered why Chris wanted a bird feeder, now I knew. All his life, Chris has helped people: giving them jobs, helping them with housing, even going to the Sisters of Atonement and making sandwiches for the homeless.
Now that he’s infirm, none of that is possible. But these small creatures, Scout and his friends, depend on him. That allows him to feel generous. It lifts his spirits.
In May we were gone for two weeks. We came back to an empty, abandoned bird feeder. We put feed out right away, early in the morning, but in spite of repeated checking, we saw no birds all day. Chris came to the dinner table disappointed.
Rice Christians, Chris said, as he unfolded his napkin. That’s what the little beggars are. Rice Christians.
This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.