We moved from out-of-state and next door to my parents eight years ago. My husband had retired and our plans were that he and daddy would fish; I would begin a private practice, and be with my mother as she aged gracefully.
The short version is that within a few years after our move, my mother was diagnosed with Alzheimer’s and my father died. While I try hard to focus on what is good or going right, the fact remains that being my mother’s caregiver is an exhausting and all-consuming life style. And yes, there are more times than I care to admit that I drop this tenuous and significant role as her caregiver.
I am most always - on and available, never knowing what situation will present itself and that my response must be communicated in such a way that is reassuring to her or understood. Facial expressions, touch, and voice tone seem to communicate more than words.
She changes from hour to hour! Sometimes my mother is so mentally present that I can feel my heart flutter; we connect, talk and laugh! Then it leaves; she becomes repetitive or words won’t come out, or she’s off through the house looking for something but doesn’t know what, or tries to do something and can’t remember how. I am always aware that each day her brain is dying – that she will get worse, not better.
I have the sweetest man of 36 years who loves my mother; nonetheless, my time with him is so limited, which impacts our marriage. Time with friends and activities are limited. I have family members who refuse to share in or commit to our mother’s care. I vacillate from feelings of anxiety and disappointment to those of thankfulness and privileged.
I know, I know, thankfulness and privileged are words that seem out of place as the caregiver for my mother with Alzheimer’s. Let me just say that it has taken me seven years to get to this place of acceptance and know it is okay to acknowledge the good from this insidious brain disease.
Here is my list of good: Most days, I get to see her smile so sweetly and often she will just crack up laughing! The mother that I could never please now is so incredibly easy to please. Whenever I bring something in she will say, “Oh, this is what I’ve always wanted!” I get to hear, “you look so pretty this morning” or “this tastes so good!” When I’m off to the dreaded grocery, she will say, “Just get me ice cream or buy whatever you want!” And, I get to hear her say, “Goodnight sugar!”
Today my thoughts on being an Alzheimer’s caregiver end here.
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Original content the Alzheimer's Reading Room