Being the primary caregiver for someone with dementia of any form (including Alzheimers) is extraordinarily difficult. Each day comprises a rollercoaster of emotions that make coping with even simple tasks a monumental chore. I find acknowledging what I feel is a huge comfort.
Acknowledgement is the first step to acceptance and acceptance is the foundation of the healing process that is as much a part of this journey as the pain and the joy (and yes, there can be joy in the ruins).
Nothing prepared me for dealing with this disease and being someone’s primary caregiver. My role as a care partner is now about a decade long and I still experience the same feelings, sometimes for the old reasons, sometimes for new ones.
Here’s a list (by no means complete!) of some of the “downs” (some “ups” here) on my Alzheimer care partner rollercoaster:
1) Despair
at being helpless in the face of this disease that seems so random, cruel and senseless.
2) Frustration
with things big and small like not being able to find a cooking pot or utensil when needed because the person living with dementia has put it in some unknown location or not being able to manage sometimes aggressive language or behavior or not being able to get proper high-quality care for people living with dementia.
3) Anger
at the person with dementia and the disease and myself and everybody because of all the shit (literal and figurative) we collectively go through as care partners. Anger at my own behaviour and the behaviour over which people with dementia respond, and at others who don’t “get” the disease or understand a loved one’s needs and who block efforts to alleviate the suffering caused by external stuff that could be fixed.
4) Guilt
that I couldn’t, can’t and won’t be able to do more for the person I love who lives with dementia; that I sometimes lose my temper or express my frustration or am not as compassionate as I might be. Guilt that I was not, am not and never will be Mother Teresa. Not even close!
5) Sadness
that so many amazing lives end in such a tragic way; that people are slowly robbed of precious gifts — awareness, memory and the capacity to think and act rationally — and that so many care partners suffer as they try their best to care for their loved ones with little support, understanding and resources.
The flip side of the coin is here:
https://myalzheimersstory.com/2016/06/27/17-links-to-the-other-side-of-dementia/
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My Alzheimer's Story 
Not Mother Teresa but a lovely decent human being nonetheless .
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Thanks Carol 🙂
XOX
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Thank you Susan. I just got back from a visit to my parents whoI live a couple of hours. Mom has dementia. Still living together in an assisted care apartment, dad shoulders much of the front line, which presents its own challenges. The whole situation, including living arrangements, after being on a large farm for most of their life, is stressful for them, and those close to them.
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Yeah, I hear ya… ❤ ❤ ❤
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I too have felt them all but as you say, there is the flip side including love, joy, gratitude, etc. Keep doing the great job you are doing!
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Yep and thanks 🙂
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Oh, do I hear this loud and clear! I’ve been sick with the stomach bug today, and my husband is having one of his whiny, crabby, critical days. He just misplaced a second batch of checks (it was returned to him by a neighbor who found it under their front stairs and he put it in a safe place) and all I’ve heard today is how careless I’ve been. I just want to curl up and cry.
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Go ahead and curl up and cry – it may be exactly what you need. I wrote a poem about it here: http://amazingsusan.com/2014/02/07/dead-to-the-world-2/
Also, are you on Facebook and do you participate in any caregiver groups? They are excellent places to vent, rant and get empathy and support.
Let me know if you would like me to send you the names of some of the groups.
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I would love it. Thank you! I’m not part of one at the moment and would love a place to share.
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I sent you an email Queen; did you get it?
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Thank you for this Susan, had a little cry because you’ve hit the nail on the head – again. This morning my partner woke in a terrible mood (I am too because he’s been snoring all night and I’m really tired). I go into the bathroom to see he hasn’t flushed the loo as usual and there’s pooh all down the bowl. I needed to get him to shower because we’re going to my mum’s birthday dinner later, there was a whole lot of swearing and why should I and I who is that woman I don’t know her….. When I finally get him in the shower I somehow summon the patience required to get him to clean himself properly and wash his hair, while he’s drying himself I see that the bed sheets are soiled because he doesn’t wipe his bum properly …. and so it goes on. But today is just a bad day and yesterday was a good day when he was quite happy. But that’s part of the problem, the days are roller coasters too, some are OK to good to very good or it might be bad to very bad, to really horrible!
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