A Way Too Personal Blog Post

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.

Not today.

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.

IMG_2257

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.

IMG_2319

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.

Advertisements

6 thoughts on “A Way Too Personal Blog Post

  1. Mairi Chantal says:

    every time I read your blog I am filled with regret that we are not in touch more often and that I am not a better friend to you!. I can’t imagine what you are going through or have gone through without your mom in the role that you would have expected. I relate to the feeling that we are too young to be dealing with such things but then I remember that our parents dealt with such things with their parents at our age. They just seemed so much older than us then!. Have you looked into Protem in Moncton? My grandmother lived there and it was an amazing facility specifically for people with dementia. She was treated with the utmost dignity and it was well worth it for the peace of mind it brought us all to know she was in a welcoming and caring environment.
    I hope we can get together soon and that you know I am thinking about you and if there is anything I can do to support you please don’t hesitate to ask! !
    Mairi Chantal

    • No regrets! I think we all feel guilty of not keeping in touch with people as much as we’d like to. I know I could keep in touch a lot better and I think because of this I often forget that just because I don’t have a lot of super close friends near by, there are people I can reach out to. It’s nice to be reminded of that when I post something like this and see all the supportive responses.

      I’m not sure where Dad has looked into, but I will mention Protem to him. Thanks.

  2. Tammy says:

    Hi Karen, don’t feel regrets everyone suffers differently, like you said you were going through a whole lot of changes in your life going from teen to a young woman, your mother lived and breathed every moment for her children and perhaps just when you needed her the most she wasn’t there in mind. All the time we spent together her girls were still the center of her thinking. Her disease is so unlike other cases, she does still remember everyone so do what you can now for her and expecially for your dad, she will remember even if it doesn’t feel like it. Your dad is amazing keeping true to his vows in sickness and in health for better for worse, he has to make the hardest decission in his life when to let go and place her in a manor he will for sure need all of our support. Just remember that Ethel is and always will be by your side both on earth and in heaven when the time comes. Just remember the two peices of blue seaglass she found on Aug 8, 2008 it is a sign that her parents were together and doing ok. God takes care of all of us, he loves us more than our own parents do. Life is not a perfect road the potholes are ment to make us stronger.
    We don’t see or talk enough but we are here anytime you need to talk or just chill out.
    Love Tammy and Billy

  3. Joyce (Cindy's sister :-) says:

    Karen, you are so brave and beautiful, to share your family journey with us. Writing this cannot be easy: your words give shape to sorrow, loss, and grief, but also to love, healing and forgiveness. Thank you for your open, thoughtful heart, and *know* that you are not alone.

  4. Hi Karen: This is Susan Gesner, your cottage neighbour from PEI. I have watched your mom for the last five summers slowly fade away. I have also witnessed such incredible love shown by your Dad to her as he cared for her. Many times as we sat in our circle on the beach, she often spoke of her great love for her children. I have ‘walked in your shoes’ with my own Mom who passed away the same way 10 years ago! My deepest sympathies to you! Hope to see you this summer on the island!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s