Care at Home
Every day is a marathon. So much to do, so many demands on my time.
Caring for my mother with Alzheimer’s…my father…my husband and children…on top of full–time work. At times I feel completely overwhelmed, and I wonder how much longer I can keep it all up.
When my parents moved in, our family life was turned upside down. They could no longer live safely in their own home. Several times my mother wandered off and got lost, and my father was frantic. Twice she forgot to turn off the iron. She wasn’t remembering to eat. So it was necessary for my parents to move in with us. This isn’t the first time my mother has been diagnosed with dementia. Ten years ago she had a stroke and ended up in hospital, and her speech was very confused. The doctors figured she had dementia, and made arrangements to transfer her to psychiatric care. This sounded wrong to me. I didn’t think my mother had shown any signs of dementia up until that point, so I questioned the doctor’s diagnosis, demanding a review of her symptoms. Sure enough, it turned out she had aphasia—the stroke had affected her ability to communicate. I’ve since learned that it’s not uncommon for symptoms that might have some other cause to be blamed on dementia, especially with older folks. It took a while, but eventually my mother’s speech improved.
Now, ten years later, she really does have dementia. There wasn’t much discussion about my parents moving in with us—I’m the only daughter in a fairly traditional Chinese family, so it’s expected that I would care for them. My father…well, he isn’t yet at the point where he can acknowledge my mother’s condition. He seems ashamed of her. There’s still a stigma around mental illness and dementia in our community, especially among the older generation. It’s not talked about. Instead of admitting that my mother’s mind is deteriorating, my father just gets impatient and angry with her. He complains that he now has to do all the cooking. This isn’t what elderly Asian men are accustomed to doing.
I have to create some balance in my life, and I shouldn’t feel guilty about taking time out.
I hope I can find a way to talk to him so he’ll listen. I know this isn’t easy for him— he’s losing somebody important to him. It’s scary for me, too. It would help us both if we could talk about it.
When I’m home, my mother follows me around the house like a puppy. She’s anxious and fidgety, and is always wringing her hands. I know she needs reassurance and understanding, but I’m tired after a day of work and it’s a challenge for me to be patient. If I snap at her she looks hurt, and I feel guilty.
Caring for my parents in our home has been hard on my own family. I never seem to have uninterrupted time to spend with my children. My young son has been quite angry lately, and his sister feels uncomfortable about bringing home her friends. I’m thinking I’ll take the children out to a special lunch next week so we can talk. I can reassure them and answer any questions they have. They are old enough to understand what’s happening to their grandparents. I could ask the kids for suggestions on how we can make this work better.
Looking back, I realize that I should have insisted that my parents make decisions about their future when they were still capable of having this conversation. But I was busy with my babies… anyway, it never happened. Now that they can no longer cope on their own, and have reached this crisis point, it’s fallen onto my shoulders. Since my parents put off seeking medical attention, I’m just now starting to figure out where to go, what questions to ask, and what treatment or resources are available. It seems so complicated! At first I didn’t have a clue where to reach out to for help.
A turning point for me was when I met the case manager assigned to my mother. That poor woman listened to me pour out my story, and let me cry for a while. She assured me that I was doing an amazing job under difficult circumstances. Apparently I could have sought out support long before this, but it’s not uncommon for families not to seek help until they are in crisis.
The case manager was adamant that I needed to find time to care for myself. I have to create some balance in my life, and I shouldn’t feel guilty about taking time out. As she said, if the primary caregiver gets sick and goes down, she takes everybody else down with her.
She helped me understand my mother’s behaviour, and the progression of the disease. We discussed some medications and treatments I should discuss with my mother’s doctor. And then we started working on a plan to help me cope. There will be a care team helping my mother, and I’ll be part of that team.
I learned about an adult day centre that might be appropriate for my mother a couple of days a week. I’ll persuade her to at least try it. Some of the staff and the participants speak Mandarin, which should make her feel more comfortable. That will also give my father a break—maybe he can get together with some of his friends for coffee like he used to.
If we can get some home care support on the other days, especially to take my mother for a walk or give her a bath, I won’t be under as much pressure when I get home from work and I can look into some respite care for me, so I can spend time with my family or get away for a break.
We talked about the future, and what additional support I might need to keep my mother in my home as long as possible. She mentioned that I might feel better if I talked regularly with other caregivers. I left the case manager’s office feeling stronger and more optimistic than I had in weeks. I noticed that the trees are in bloom! When I got home, I made tea and sat down with my mother to look at old family photos for half an hour. My kids came by and were curious about some of the pictures, and my father told us stories I had never heard from before I was born. I think I’ll be bringing out those photos again.
My husband came home from work, and announced he was going to pick up Chinese take–out food for dinner—no cooking required! Everybody cheered, and my mother’s face lit up with an enormous smile.
I’m going to take this one day at a time.
Continue the Journey: Making Decisions about Care