Many Meetings
I haven't been as delinquent a daughter as my lack of recent postings would indicate. I've been up to The Birches 5-6 times since my last post, but with changing jobs, lifestyles, and moving, I just haven't written about it.
In that time, the visits started very bad and then got better. The earliest visit was a couple of weeks before Easter. I found Mother in the activity room, which was crowded with both residents and relatives as a guest performer led the residents in some singing and handed out rhythm instruments.
I went over and greeted her with a kiss, but she didn't even acknowledge me. Another woman in the room did, however. She came quickly over, stood next to me, looked me in the eye and puckered her lips. I gave her a kiss. She beamed, took my hand, and said that she loved me. Who she thought I was, I'll never know. It struck me that in this mixed up world of Alzheimer's, you take whatever friends and relatives come along, whether they are yours or not. And you love them.
That day my own mother was simply not engaged. When the rhythm instruments came around, I took a long plastic tube for myself and also one for her. I tried to get her to bang it on the side of her chair as others were doing. Nothing. I took her hand and did it with her. Nothing. She did hold it and I hit my tube against hers, but she did nothing on her own.
Some of the staff came to her after the program and managed to get a smile out of her, but I got nothing. She wouldn't even look at me. It was a very hard day.
The following Sunday (Palm Sunday) I came home from church to a phone message from The Birches. They had taken Mother to the emergency room. In the night they heard her scream, went in and found her legs out straight and foaming a bit at the mouth. She was conscious but unresponsive. Of course on a Sunday morning they couldn't get hold of either David or me, and I was the first one back.
So I went tearing up to the Concord hospital and found her in the ER. She was responding a bit by then, but not all that much. Long story short--she had a severe urinary tract infection. They kept her at the hospital several days. It's so hard to diagnose a patient with Alzheimer's. The new symptoms could just be a new stage of the disease. Or it could be something else. But the patient can't explain what hurts and what doesn't or help in any way to sort it all out.
With the craziness of Easter and me packing to move two days later, I knew I wasn't going to get up on Easter day. So I went back up on Good Friday. She was back at the Birches by then. She was up eating breakfast. It was almost noon. They said she had been pretty stiff that morning and it took quite a while to get her up, but that she had been able to feed herself a bit. She was still working on her waffles. She took a couple of bites on her own and I fed her some.
The next two gatherings were larger family groups. All our birthdays are clustered in April and May, so we gathered in April to celebrate the April birthdays and then this past Sunday for Mother's Day and the May birthdays, which includes Mother on both counts.
She seemed much, much better on Mother's Day. She looked less like a bag lady zombie and more like my mother. And she smiled. And she seemed pleased to see me. And she payed attention to what people were saying.
It was hard to tell if it was her or me. My life changed significantly from April to May. A new job, a new house. Now it takes me almost three hours to get to the Birches and two just to commute one way to my job. But I am so much happier. So I couldn't sort out whether Mother seemed so much better simply because I was so much better or if she really had improved.
And I thought how much attitude and dis-ease has to do with just about everything. What we feel on the inside comes out. When Mother was wracked with infection she couldn't respond to much. And when I thought her unresponsiveness was the progression of the disease or somehow about me, I was too depressed myself to lift her spirits. When my own mood lifted; when her infection was cured; things looked very different for both of us. That's not exactly a new revelation to the world, but it's hard to see when you're caught up in it.
In that time, the visits started very bad and then got better. The earliest visit was a couple of weeks before Easter. I found Mother in the activity room, which was crowded with both residents and relatives as a guest performer led the residents in some singing and handed out rhythm instruments.
I went over and greeted her with a kiss, but she didn't even acknowledge me. Another woman in the room did, however. She came quickly over, stood next to me, looked me in the eye and puckered her lips. I gave her a kiss. She beamed, took my hand, and said that she loved me. Who she thought I was, I'll never know. It struck me that in this mixed up world of Alzheimer's, you take whatever friends and relatives come along, whether they are yours or not. And you love them.
That day my own mother was simply not engaged. When the rhythm instruments came around, I took a long plastic tube for myself and also one for her. I tried to get her to bang it on the side of her chair as others were doing. Nothing. I took her hand and did it with her. Nothing. She did hold it and I hit my tube against hers, but she did nothing on her own.
Some of the staff came to her after the program and managed to get a smile out of her, but I got nothing. She wouldn't even look at me. It was a very hard day.
The following Sunday (Palm Sunday) I came home from church to a phone message from The Birches. They had taken Mother to the emergency room. In the night they heard her scream, went in and found her legs out straight and foaming a bit at the mouth. She was conscious but unresponsive. Of course on a Sunday morning they couldn't get hold of either David or me, and I was the first one back.
So I went tearing up to the Concord hospital and found her in the ER. She was responding a bit by then, but not all that much. Long story short--she had a severe urinary tract infection. They kept her at the hospital several days. It's so hard to diagnose a patient with Alzheimer's. The new symptoms could just be a new stage of the disease. Or it could be something else. But the patient can't explain what hurts and what doesn't or help in any way to sort it all out.
With the craziness of Easter and me packing to move two days later, I knew I wasn't going to get up on Easter day. So I went back up on Good Friday. She was back at the Birches by then. She was up eating breakfast. It was almost noon. They said she had been pretty stiff that morning and it took quite a while to get her up, but that she had been able to feed herself a bit. She was still working on her waffles. She took a couple of bites on her own and I fed her some.
The next two gatherings were larger family groups. All our birthdays are clustered in April and May, so we gathered in April to celebrate the April birthdays and then this past Sunday for Mother's Day and the May birthdays, which includes Mother on both counts.
She seemed much, much better on Mother's Day. She looked less like a bag lady zombie and more like my mother. And she smiled. And she seemed pleased to see me. And she payed attention to what people were saying.
It was hard to tell if it was her or me. My life changed significantly from April to May. A new job, a new house. Now it takes me almost three hours to get to the Birches and two just to commute one way to my job. But I am so much happier. So I couldn't sort out whether Mother seemed so much better simply because I was so much better or if she really had improved.
And I thought how much attitude and dis-ease has to do with just about everything. What we feel on the inside comes out. When Mother was wracked with infection she couldn't respond to much. And when I thought her unresponsiveness was the progression of the disease or somehow about me, I was too depressed myself to lift her spirits. When my own mood lifted; when her infection was cured; things looked very different for both of us. That's not exactly a new revelation to the world, but it's hard to see when you're caught up in it.
posted by Anne Robertson | 10:55 AM
2 Comments:
My mother also has Alzheimer's. She is in the later stages of the disease, diagnosed 8-9 years ago. She had a stroke last night and it's looking like this might be the end. She would (will?) be 51 this October. Not knowing what to do I turned to something familiar, the internet, and found your blog. While reading your posts I can't help but laugh and cry. Such a large portion of my life as been dedicated to this disease. I left college so that I could take care of her full time. I have no kids, but I imagine that the constant vigilance and worrying is very similar. Every odd sound makes you spring into action to see if she is hurt. I'm sorry, i've started rambling here. All I really wanted to say is that by sharing your stories you have deeply touched my heart. I know it is hard, but you're helping people by writing. I know you've helped me tonight. Thank you.
I really enjoy your stories.
I am the primary caregiver for my 79 year old Dad who has Alzheimer's Disease and lives with me in NC.
I am writing a blog that shows the lighter side of caregiving, and offers tips for caregivers.
Please pass this link along to anyone you think may enjoy it.
www.KnowItAlz.com
Thanks,
Kathy
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