December 31, 2021
Tonight my mom stood over me as I sat in a kitchen chair, hand on one hip, shaking with anger and told me she was going to kill herself, “and make it as painful as possible for you to watch so you’ll be sorry.”
She was angry because she thought I was playing mind games with her when I tried to tell her we were in her house, the one she’s lived in for over twenty years, and I was prepared to defend myself because I thought she might take a swing at me.
This is the reality of being a caregiver for a dementia sufferer.
Read that sentence again. I use specific words on purpose. I’m tired of calling myself a care partner because I don’t think we are partners in caring for my Mom anymore. I think my job is to GIVE her care, and to care FOR her, even when she is angry, mean, and vile towards me…because she is suffering from dementia.
Tonight was not the first time she was angry, mean or vile towards me. Sadly, it has become more and more regular. Lately it has been anger in the form of telling me she doesn’t want me around. Things like telling me on Christmas Eve I need to leave and I can’t be here on Christmas Day because Christmas is for family, and I’m not family. I can’t be angry with her for those things because she when she’s in that reality it is her reality. I’m not her daughter. I’m not her family. I don’t belong in her house. Those are her truths in those moments.
It’s frustrating. There’s no denying I’m tired of not being able to leave the room and be out of her sight for more than a minute before she’s calling out my name and asking where I am. Even when I just told her I was going to go to the washroom.
At the same time I’m tired of getting sent away then being called every fifteen minutes asking where I am, and when will I be home, only to come back, and have her calm down and tell me an hour later that I need to go. Again.
I’m tired of being woken up every time I start to drift off to sleep by her calling my name then not remembering why she wanted me. Then having her wake me up after only four hours of sleep so I can help her dress, and make her toast and coffee, and sit at the kitchen table for three hours in silence.
I’m tired of being tired because when I’m tired I have a hard time hiding my own frustrations and she senses them. When she senses them she takes them to heart and thinks I’m mad at her. Or I don’t like her. And she gets sullen, or worse yet, sad and fragile and starts to shut down and all I want to do is hug her and make her feel loved and safe, but she won’t let me because she thinks I don’t like her all because I couldn’t hold back a sigh or a bit of my tiredness/frustration seeped into my voice.
??I’m tired of not being able to have my laptop open because if I try to do email, or read, or do anything else where she can not see what I am doing her paranoia kicks in and she starts asking me to take her home. Or to school. Or “wherever I’m (she’s) supposed to be.”
I’m tired of trying to find things for her to do, to find something, anything, that she might have a spark f interest in, and to constantly be told no, only to have her tell me how bored she is or snap “What are we doing? We going to just sit here all afternoon?”
I’m tired. I’m frustrated. I’m nearing the end of my rope.
But I’ve thought that before.
It’s been 15 months since my Mom’s delusions took over my life. I’ve taken a leave of absence from my day job. I’ve sopped writing, other than to journal to try and deal with my feelings, and to track Mom’s behaviours in an effort to either make some sense of them or help the dr’s. I’ve given up on improving my own health, and struggle to maintain where I am instead of getting worse. I’ve prayed the sharp pain in my chest isn’t a heart attack, and the sharp pain in my skull isn’t a stroke more times than I can count. I’ve spent half of my retirement savings just maintaining my bills and decided to spend the other half on a new vehicle because if I didn’t, at the rate this is going and how long it’s lasting, I’ll never have the money to get one after this. I’ve missed out on opportunities for advancement at work. I’ve missed out on my second chance at rejuvenating my career as an author.
And I don’t regret it.
None of it.
My mom has always been there for me. I love her more than words could ever express. And every time I think I’ve hit my breaking point I don’t think of who the woman I see is. I remember the woman she was. My mother. My best friend. The one person in the world who would do anything for me.
On Christmas Eve, after my mom sent me away, I called a dear friend because I needed that connection. She said something that helped me. Something I’ve started reminding myself of daily that gives me strength. She said…”Her mind is dying, but her heart is not. Love lives in the heart.”?? I choose to believe that her mind might not know the things I, (or my Dad & brother)do, or who we am, but her heart does, and she DOES get comfort on a special level from it. Even if she’s lashing out.
While I don’t regret it, that doesn’t mean it’s not hard. That I don’t struggle, and pray to a God I’m not sure I even believe in. Tonight, I’m not even pretending to plan or make a resolution for the new year. It’s just another night for me. The only difference is I’ve decided to post some of my journalling here instead of keeping it to myself. I’m posting for me, because I need to write and share, and for anyone else out there who has been, or is, or will be, a caregiver. Because I recently realized that maybe my sharing wide now will help someone else feel less alone in what they are going through. Since this part of my story with my Mom has started I’ve also learned that so many people I know, and meet have been through this with a loved one. Yet somehow I still walked into it and was immediately in over my head. I don’t think enough people share to educate and help others. Maybe because they can’t, or don’t know how, or they have shared, but only with those they know.
Either way, I’ll likely be sharing more. It won’t be regular, but there will be more, when I can. For now, Blessing to all.
Huge {{hugs}}, hon. I feel your pain.
My mom suffered from dementia for years before finally passing in her sleep. Her journey thru that illness was the hardest thing I & my family ever had to endure.
Please know that your mom is still there & that she still loves you. In fact, we were told that the ones they deeply love are often the ones that patients strike out at the most.
And remember, you are not alone. Please reach out for help to friends, family, & organizations whenever you need to.
Thank you, Raine. I am so sorry for your loss. I’ve heard this is the hardest things before, but really, had no idea just how hard it is. Not just the physical exhaustion and such, or even the heartbreak break of watching someone you love fade away, or turn into someone else before your eyes. But a soul deep ache that I think will never go away. That I was , stupidly maybe, not prepared for.
Thank your the support, my friend. It’s been too long since I’ve heard from you, and I’m sorry this is the reason why, but I AM glad to hear from you. (hug)