Family caregivers: the different issues of spouses and children

The Lewy Body Dementia Association sent out a newsletter that included a short article on "Five Questions Caregivers Should Ask Themselves."  One of the questions was:

• Do you have a supportive spouse or partner, a negative partner, or no partner? How does this relationship affect your caregiving and how does your caregiving affect your relationship?

Wait a second.  What about those of us who are caregiving for our spouse/partner?  Can you imagine the lack of support then?  I get so frustrated when I go to read an article about caregiving and it speaks only to the issues facing children caregiving for a parent.  Maybe the answer is separate groups: on Yahoo there are separate support groups for Lewy Body Dementia for spouses and for other family caregivers.  Half-seriously, I suspect that is because the children couldn't stand to read the spouses writing about what to do about sex.  Another group I find helpful because it addresses the issues of spouses is The Alzheimer Spouse, which includes lots of spouses dealing with other kinds of dementia as well.

I want to say some things to children caring for parents.  First, if you are sharing caregiving with your parent's spouse (whether that person is also your parent or not), think about that person's right to make their own choices even if they are not the ones you would make (go read this article about knowing what is best for another person).  Watching the decline of a parent and of a spouse are both great griefs, but they are different griefs.  Try not to be so caught up in your own grief that you don't see how it is for the spouse.

If you write about caregiving in a forum not specifically oriented towards children caregiving for parents, please acknowledge that many caregivers are spouses.  And we may be your age.  I'm 56, caregiving for a 65 year old husband in the early stages of Lewy Body Dementia.  I know women in their 40s with children still at home caring for husbands with early onset Alzheimers.  We may be working full time; we may have dreams of what we were going to do in this stage of our lives that have been crushed.  Don't leave us out of your discussions and resources.