If you know me, and know that I recently returned from a not-as-sunny-as-expected trip to Hawai’i, you might be expecting to see rainy pictures of beaches or a million pictures of sea turtles.
I feel a little weird about posting this. It feels like something that shouldn’t be talked about for some reason. Too much information? Too personal? Cultural taboo maybe? I don’t know.
But I feel like I need to speak out about it to help my grieving process. Even though my mom is still here physically, she is slowly disappearing in front of my eyes, and this ambiguous loss is just as real and difficult to deal with as if she was actually gone, maybe even more so because it’s been going on for years and there is no closure.
When I called to check in with my dad yesterday, I could tell something was wrong. Then he told me that he was the midst of making phone calls to start the process of placing my mom in a nursing home because her Alzheimer’s is progressing and it’s getting to the point where it, understandably, is too much for him.
I completely agree with his decision and I commend him for everything he has done to take care of her so far. My dad has shown me what true love means, and I can only hope that if I end up like my mother that I will have someone who loves me as much to take as good care of me. He retired early to be with her, at first to spend time with her, and then to look after her and assist her with activities of daily living as her disease progressed. The biggest struggle now is getting her to take her medication every day and this, as well as the fact that their house wasn’t the bungalow design they had intended to retire in, is what is prompting him to get the ball rolling on placement. Nursing home spots take time to find, and unfortunately, Alzheimer’s doesn’t get any better, it just keeps getting worse and worse. It will be a big weight off Dad’s shoulders, and he deserves that. He deserves to enjoy his time with mom instead of worrying about whether she will take her pills for him.
While logically I knew this point was coming, it marks another milestone in my family’s journey. And after reading Loving Someone Who Has Dementia, I’ve learned that there’s not something wrong with me when I get upset about my mom’s condition, especially at times like these. It is a loss. And because of the nature of the disease, losses keep happening. There was the loss of her not being able to cook or sew anymore. There was the loss of her being able to give advice. There was the loss of her being able to find her words and carry on a conversation with me. There was the loss of her being able to look after herself. There was the loss of her being able to feed herself. And now there will be the loss of her living at home. Thankfully, she still knows who I am.
I’ve learned that I am allowed to be sad and I am allowed to grieve and say goodbye to something at these stages, although I won’t be given bereavement days to do it, and no one will send me a sympathy card. It’s not reasonable to expect myself to wait until it is all over to grieve.
I wish I had figured out how to deal with Mom’s disease earlier. I feel like I’ve been a bad daughter. She was diagnosed in 2009 in her mid-fifties, but I was struggling with my own battles, trying to adjust to life after university and starting over in a new place without the support network of friends, my own battle with cancer and the road to recovery from that, and my struggles with depression and anxiety (no wonder I ended up with mental health issues!), all without the full support I’m sure my mother would have wanted to give me.
I realize now that things with Mom weren’t as bad as I thought at the time in the beginning. Looking back, I wish I had spent more time with mom in the early years of her diagnosis. I spent too much time focusing on what wasn’t there instead of what was still there. But I felt angry and alone and didn’t know how to cope, and looking back at what I’ve gone through in the last couple of years, it’s no wonder. I have regrets, yes, but I’m trying really hard not to beat myself up over them. It took me a long time to come to terms with Mom’s disease, and I wish I had figured it out earlier, but at the time, I just couldn’t.
Thankfully, as I talked about in this post, I finally figured it out (well, as much as anyone can really figure it out), last summer and spent as much time as I could with my family in our favorite place, the cottage in PEI, and that helps now. I got to do the things she liked with her – eating ice cream at Frosty’s, walking on the beach, and seeing Leon Gallant sing. I feel like I was given a second chance last summer, and for that I am grateful. I’ve learned not to procrastinate, there may not be a next time or a next summer.
The point of this very personal blog post, is to share my story, and in the telling of it, help me with the ongoing ambiguous loss and grieving process. I also want to let others in my shoes, especially the ones like me, who are far to young to be watching a parent struggle with Alzheimer’s, know that what you’re feeling is normal. It’s ok to start grieving and letting go when new losses happen, even though your loved one is still physically present. It took me a long time to realize this, and if I can help you figure it out sooner, or help you feel supported after reading this, then this post was worth it.