Making Decisions about Care
My sister is on the phone, calling from the reserve.
I’ve never heard her sound so exhausted and depressed. She apparently had a fight today to get my mother to take her medication. Mom knocked the pills out of her hand, sending them flying all over the floor. And there was an earlier scene when my mother kicked at the door, shouting that she was being held prisoner. My sister had installed a special doorknob cover to stop Mom from going outside and wandering off again, because two days ago it took hours to find her in the pouring rain.
“I’m not sure how much longer I can do this,” said Sis. “I really want to do what’s best for Mom, but I’m going crazy trying to cope.”
I’ve also been finding it much more difficult, lately, to manage my mother’s care. Even though my sister and I take turns looking after her, I’m wondering if it’s more than we can handle. My mother’s behaviour is now more erratic, her care is becoming more complex, and she really needs someone watching her constantly.
When my mother was diagnosed with dementia five years ago, my sister asked if I would help with her care. That was a hard decision for me, as my mother and I never really got along. She’s got strong opinions, so there were lots of arguments when I was at home. I left the reserve and moved to the city years ago. I like my independent life here, and I wasn’t sure I wanted much contact with my mother.
One good thing that has come out of all this – my sister and I are now much closer... It sure helps to have someone who understands and lets you rant when you need to. Even so, caring for someone with dementia is tough.
But my sister needed my help, so I said yes. She still lives on the reserve, where there isn’t a lot of outside medical support for someone living with dementia. There’s one doctor, but my sister hasn’t found him to be particularly helpful. Here in the city there’s easier access to doctors, pharmacists and other specialists.
One problem I’m finding, though, is that with my mother’s Indian status, it’s a nightmare to find out what services she can access, both here and on the reserve. I’m trying to figure out where I can go to find out what’s available for First Nations people with dementia.
In addition to her dementia, mother has diabetes, so that adds complications. She’s no longer capable of keeping to her diet, so we always need to be watching what she eats, have her blood sugar levels monitored and give her insulin injections. I’ve rushed her into the emergency ward a couple of times when she went into a diabetic coma.
Just down the road from my apartment there’s a drugstore, and the pharmacist there has helped me a lot. I told her how stressed out I was getting looking after Mom, and she asked what extra support I was getting. She suggested that our health authority website would be a good place to startfinding out what help was available. She also talked about adult day centres for seniors and Aqua–fit classes at the recreation centre.
Our shared care arrangement gives both my sister and me a break now and then, but Mom gets confused and unsettled every time she has to move from one place to the other. She’s reverted back to her childhood language, and the reserve is the only place there are other people who still speak this language. Not that she gets a lot of visitors when she’s there, anyhow. Partly it’s because she’s pretty confused much of the time. Also, people in the village don’t know much about dealing with people with dementia. My sister feels very isolated in the community, as well as protective of Mom.
One good thing that has come out of all this—my sister and I are now much closer. We talk all the time on the phone. We compare notes, and share strategies that have worked for us to deal with my mother’s difficult behaviour. It sure helps to have someone who understands and lets you rant when you need to. Even so, caring for someone with dementia is tough.
Last time my mother moved back here, I was shocked to see how much she has deteriorated. She used to love going to the park to listen to music, or wandering through the mall, but this time she was withdrawn and apathetic. I noticed the difference because I hadn’t seen her for a few months. We have now started keeping track of her behaviour, so we have a better record.
My sister has always hoped to keep my mother at home until the end. She hasn’t allowed herself to think about residential care options. But the way things are going, I wonder how we are going to be able to continue to manage this. How can I work and look after my mother if she needs round–the–clock supervision? At the same time, I worry about what kind of placement we would be able to find for her, especially as she no longer speaking in English. Will there be a place that’s respectful of her culture? I wonder where I can find out more about that.
It’s hard to think clearly when you’re feeling stressed out. I really don’t know what’s the best thing to do. But after listening to my sister on the phone today, I know the time has come to make some decisions.
Continue the Journey: Remaining at home