The best laid plans. I was scheduled to take a Business Development course through Community Futures, starting next Monday and running four weeks. This would not only have helped me to realize my dream, but would have provided EI for up to forty-six weeks, which would certainly have helped. As all of you know all too well, no one pays you to care for a relative with Alzheimer’s. It’s been five and half months of zero income and this is very hard. I was originally to take the course in early June, but, of course, had to cancel when my Dad passed away and I had to care for my Mum fulltime.
It is painfully hard to arrange care for an Alzheimer’s patient in Kelowna. I managed to get a precious daycare spot for her at Hawthorne, and arranged for the Handi-dart bus to bring her home at night. My sister was coming down from Revelstoke to take her there Monday morning, stay with her a while and then pick her up at night. She then said she was too busy and could not come down, leaving Mum to me. On a recent assessment of her condition she told the nurse she wasn’t going to go to daycare – that she just fine on her own. The nurse tried to explain to her that she cannot be left on her own, but she would have none of it. She said she was at the age where she could do what she wanted to, and she wasn’t going anywhere. The nurse suggested we take her for a short visit on Wednesday to meet the staff and show her how much fun she would have. She arranged a spot on Wednesday and Thursday and also arranged for one of the careworkers she likes to be there Monday and Tuesday morning to meet her.
My sister called her to explain how important it was that I take my course and that she would have fun at Hawthorne. She sent her an email confirming that she had agreed to go, and that she understood how important it was to go. Wednesday morning I asked her to get dressed to go and she asked me where she was going? I asked her to read the emails again and reminded her she had agreed. On the trip in she asked me several times where we were going and when I explained everything again she said she wasn’t staying there. We met the staff and they were terrific and Mum said she had a great time. The staff all said they were looking forward to her coming again, and Mum said she would.
The next morning I asked her to get dressed again and she said "why"? When I explained where we were going she said she wasn’t going anywhere. I explained that she didn’t have a choice and that she had promised my sister that she would go, but she flatly refused. I said we had an appointment and that she had no choice but to go, but she wouldn’t even get dressed. I called my sister and asked her to call, which she did and she sent another email. On the way out the door she asked me where we were going and I said into Kelowna. I had to stop for gas and she asked me several times before we stopped where we were going. I asked her to read the emails from my sister and she got very angry when she saw Hawthorne. She said she wasn’t going to go, and if I dropped her off she would just "thumb home". No one could make her go and she wanted to go home. She tried to get out of the car and, when I held her arm, screamed at me to let her go.
I lost it on the way home and told her I would have to cancel my course that I tried so hard to get into, and that she was being very selfish to not care how hard I had worked to get her into daycare. I asked why she thought I had been caring for her for the last five and a half months and she said it’s because I didn’t have a job. I asked if she knew why I couldn’t work and she said it was because I was "f*ckin useless". I had to cancel the course, the daycare and the Handi-dart and try to reschedule her care workers. Luckily the careworker who was cancelled that day managed to reschedule and come so I could leave and calm down.
The careworker who had assessed her for care happened to call me when Mum was screaming at me. She couldn’t believe the language or the things she was saying. When she heard Mum say "you can just get the f*ck out of here:, she said "oh, that must hurt". I said that it did the first time, but after about thirty times of hearing it, you get used to it. She said she has upped her care need to "first available bed" now.
The sad part is that the plan for Mum was good. She was able to stay in her own home and attend to daycare to see what they do there and to enjoy herself. We would be together for her last Christmas here, then get her into a care facility where she could still come home on weekends until her place was sold in February. With getting the EI from taking the course I would be able to hang on until the house was sold. Now she has refused to work with us and will be confined to a care facility and not able to come out. All of this earlier than planned or wanted.
The perversely good part is that she has lessened my guilt at putting her in a home. No matter how hard I have worked to make her happy these last few months, and believing she is better off in a facility where she will get the care she needs, I still bear the burden of putting her into care. Now, she has made this choice the only choice, and this relieves some of my guilt.