It happens in every family of someone with dementia, someone eventually becomes the primary person responsible for the one with the disease. I’m not talking about spouses, I’m talking about when the parent must be cared for by a child or the children. In my case daddy tried to take care of (and hide what was happening) with mom until he couldn’t handle it anymore mentally and physically. He became seriously ill too which resulted in my being a caregiver to two – but more about that later.
If you are an only child well then it’s pretty much a done deal but what about when there are other siblings? In my case there were five of us still alive when mom first became ill. Two lived out of town and the rest of us lived in town with mom. My two older sisters were both squeamish about nursing homes and hospitals with one of them helping me out off and on.
My two older sisters no longer had children to care for in their homes while I, the baby of the family, had one in elementary, one in junior high, a job, and a marriage that was slowly but steadily working it’s way to divorce. The Ex did help me out sometimes; I will give him that.
Not only was I a member of the sandwich generation (caring for both children and parents) I felt like the sandwich at the bottom of the lunch bag with a big apple. a Twinkie, and a thermos on top of it.
Looking back on things now I can say that I think it was a combination of my siblings either not wanting to for who knows what reasons (maybe because dad was my father and their stepfather) or not being able to help more in taking care of mom. They did help out when and how they could but you know who got the brunt of it.
The two out of town siblings would sometimes come home for visits and help out with one eventually moving back after she retired. As much as I didn’t get along with that sister who moved back home, she was good at helping me by going to visit mom in the nursing home so that I could have a break or go on vacation and not panic. I appreciated and needed that!
But many many times I was alone battling for mom and dad against the diseases that were claiming their lives as well as dealing with the bills, taxes, insurance companies, medical facilities, and the government when it came to their care. The amount of paperwork that had to be done to get benefits for them? Ugh! I got into trouble one year because I was confused about net vs. gross income. At least they took their money back by reducing dad’s VA check until the overpayment was re-paid. They gave me that option and I ran with it.
That’s just how it goes in many families; some are able to work out how to do the caregiving fairly while in other families it can get downright ugly. Regardless of who is the primary caregiver, if it’s your job it is not an easy one but it must be done…and you can do it with or without the extra help. Trust me, you can.
So did I pull the short straw or not?