Dear Carol: My 92-year-old mother is being eaten up by dementia and I am struggling with guilt because I dread visiting her.
She lives in an assisted living center which she likes, but there's no memory unit and not a lot of hands-on help. I try to give her the personal care she needs, but she hates having me assist her. She often insults me, which is unlike how she used to be. I know she acts this way because of her dementia, but I can't help but dread my time with her.
I never thought I'd feel this way about my beloved mother. At times her old self seems to shine through, though not for long. I know I should cherish this time with her, but I don't. Then guilt eats me up. What's wrong with me? - Renee
Dear Renee: You have no need to feel guilty for a very human reaction to your mother's cognitive decline. I think it's safe to say that most people who have cared for someone with dementia, or even someone who continues to decline in other ways, would have times where we dread visiting them and seeing the painful changes.
There is often tremendous grief for adult children as they watch the parents they once depended on become physically and/or mentally frail.
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When dementia enters the picture and our elders no longer seem to act as "themselves," our distress can escalate. The child inside of each of us still wants to please our parents. When our loved one has dementia, we often don't get the feedback that we are seeking. Instead, we can be faced with complaints, and for some people, even verbally abusive outbreaks. It's as though we are being scolded for wanting to help and we can't quite get it right.
We need to remind ourselves that our elders are in distress. Confused, frightened, in mental and/or physical pain, he or she acts out in a very human way. Complaints, frustration, anger and other negative emotions can take over our time spent with them. We take this acting out personally, which is understandable, but it's generally not meant that way.
It sounds from your letter that perhaps it's time for you to hire an in-home agency to go into your mother's assisted living center to provide more care, or if she qualifies, a nursing home may be better. Making these changes will keep your mother safe and well-cared-for and leave you to do smaller things that may please her. You will be able to be her daughter again, and not just her caregiver.
You are also smart to recognize the precious moments when your mother shines like her "old self," even if those moments are brief. You'll treasure those instances long after she is gone.
You are a wonderful daughter to care so much.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com . She can be reached at carol@mindingourelders.com .
