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:
at being helpless in the face of this disease that seems so random, cruel and senseless.
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.
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.
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!
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: five uplifting emotions experienced by Alzheimers dementia caregivers.
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