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They said Mom had alzhiemer's, I'm not totally sure I agree. She certainly had a dementia.
At first there were only small signs. She lived by herself and I would check with her at least twice a day (she was only a mile away from us). The first time things hit me strangely was when she asked me why I was wearing a poppy on my lapel. I figured she had lost track of the date and answered that as we were now in the first week on November it was okay to start wearing them.
Over time, things deteriorated and it became clearer that she couldn't stay alone. We first moved her into an autonomous living centre and then into our home. Neither my sister or I (or our Mom either) felt she was ready for a Nursing Home.
Mom lived with us for sixteen months. We had some parttime help, but that was mostly so that I could work out, therefore I didn't get much rest. We originally planned on her having her own space, but her walking wasn't good enough to manage stairs without assistance and her memory was failing her in that she would forget safely rules put in place to keep her safe. So we decided to keep her on one level in our living space.
She would sometimes show up in the kitchen without her walker, I would ask her where it was and she would answer that she didn't know. There were lots of small things like that that happened. The strangest thing was probably the day she forgot that my husband and I were married. We decided not to ignore or go along with it. So we told her we were married, had been for quite a while and had three wonderful children. At that point she got angry that she hadn't been invited to the wedding. I spent the day with her, going over the wedding photos and showing her her picture and telling her she had been there. I finally said to her that what had happened, was that some"thing" had taken away that memory and that it was so sad that she couldn't remember, but that hopefully it would come back to her. She seemed to become more peaceful after the time and explaining were done.
There were days when her repetitive motions wore me out; lying down/sitting up, needing tissue, putting on and off her shoes, and others. We got a baby monitor so that we could keep track of her from out room more easily. I didn't get much sleep, in fact I spent many nights on the loveseat in her bedroom with her, reading to her to calm her down or just being with her hoping to sooth her fears. The nights my sister could come, she would take it from me and look after mom's needs. Otherwise, my husband got up early and stayed with her so I could get a bit of sleep.
I was lucky, I had wonderful support, but my friends were worrying about how tired I was getting.
Our medical system has a lot of support features in place. I had help with someone coming to spend time with her, someone to help with her baths, a caseworker who watched over her care and mine as well and amongst others, her wonderful doctor. Her doctor made house calls! When mom became unable to get into the car and travel to her, she came to mom. She made me feel like part of the team. She listened to what mom said, and she also listened to what I said. She was great.
Mom lived with us for sixteen months. It became increasingly difficult to not become short-tempered. I was getting very tired, but I didn't realize it. Her caseworker finally talked me into some respite care. It was funny, because I fought it tooth and nail to keep from accepting, but when I finally did, I was hard to relax and let it happen.
The day before she was supposed to go into respite care, I got a phone call from her caseworker to say that there was a permanent room available at one of the nursing homes not too far from our home. I was a decision we had to make within 24 hours. We rushed over to the home to check it out and were very impressed and pleased with it. I called my sister on my cell phone and had her listen over the phone as we talked to the director. She also was able to ask questions and get answers that satisfied her. We decided to go ahead with this one move instead of moving her two or three times. It was a very good idea.
There is so much more I could say about this experience, but I will finish by saying I wouldn't trade it for anything, even though it was very difficult some times. I got to spend so very special, and difficult, time with my mom. My husband helped and supported me in my decision. My sister was also hands on and supportive. I had found a very good caregiver to assist me. I was very lucky.
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