Why does society seem to differentiate between caregivers of the elderly and caregivers of children?
I am enjoying the stories of the other caregivers on your blog. These have brought up a question in my mind that I had in the past.
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Why is it that if I look after my elderly parent or spouse with dementia, I am a hero, someone special, congratulated for being a good daughter, and have everyone's empathy, concern and offers of help.
On the other hand, if I am a single parent, or a parent of a child with a chronic disability, or just any parent, my struggles are invisible, and I receive very little consideration, recognition, empathy, encouragement, help or understanding.
As caregivers of children, we are more likely to receive other people's criticism, disapproving looks and judgements. One time I saw a leaflet about a caregiver support group, and I wanted to participate, as I thought it described what being a parent was like for me. That was when I discovered that the term "caregiver" is generally reserved for people who looked after their spouses or parents.
I can't think of too many differences between the two kinds of caregiving. When I do try to argue with myself that there is a difference, I am not convinced.
Depending on the family, in both situations there can be social isolation, not enough time, not enough money, frustrations, conflicts, burn-out, depression, stresses on marriage, dreary repetitiveness, humour and joy, steep learning curves, days when you don't know how you will go on, sense of guilty, duty, loyalty, .... many of the same issues I hear people talk about in their stories about caregiving for their mothers and fathers.
Of course, the direction of care is different, we do not expect to have to look after our parent with dementia, whereas with a child we expect it. Yet, many pregnancies are accidental, even within marriages, and parents do not always look with joy on their newest child. We also don't expect our healthy children to become disabled (physically and/or mentally) and need care, some for the rest of their long lives.
If your mother does not know who you are, that is upsetting. If your teenager screams they hate you and you are not their mother, that is upsetting too.
Children can be expected to learn as time goes on whereas a person with dementia is always forgetting and becoming more dependent. However, children with developmental disabilities are probably not going to learn too much either.
People with dementia become lost to their family. Our children hopefully change for the better, we do not "lose" them. Yet children change into adults and we do lose the baby, the toddler, the teenager, along the way, that is life. They will never be that baby personality again. Children may also grow into people we do not recognize or maybe even like, they take bad turns in life and are "lost", or illness and accidents leave them unrecognizable, and death can take them away too early.
Maybe my personal situation is different because I was never close emotionally to my mom who has dementia. She's a sweet lady, but I think the dementia started decades ago in subtle ways and affected her relationships with her children. So, there has been nothing for me to lose, only something to gain, this new personality that I am getting to know, her vulnerability, candidness and delight in the moment. Also, I am not the primary caregiver at this point, so the load is shared and I can have a life outside of caregiving. I also have previous experience in this area of health care, so what is happening to my mom is not surprising or upsetting. (I do find late stage dementia upsetting, regardless of who it is.)
I wanted to ask you this question as I assume you must hear from many caregivers because of your blog, and I wonder if this topic has come up before. Or maybe it is not a question, but rather I want to say that parents are caregivers too and deserve much more recognition and help. Compared to my experience of parenting children, caregiving for my mother has been very much easier.
I am afraid to put this topic publicly as I think I have offended some people in the past. There is no point in causing people more pain when they are already struggling with their parent with dementia. I hope you won't be offended and maybe have some insights or stories to share from others.
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Original content Bob DeMarco, the Alzheimer's Reading Room