By Joce Callegari of Creative Group Consulting
How much more difficult caring for someone with dementia can be if not for family issues? So, what happened that has made it so hard to be a caregiver and deal with the family relationships?
To begin with, I think that you have to look at when you were young, what kind of caregiving did your parents do for their parents, sisters or friends? When I grew up, our family had the “elders” living with a daughter or son until they were physically too ill to have home care.
Every family seems to have one person that becomes the “one” designated caregiver. Hopefully, that person wants to be there. But in some cases today, when the family dysfunction is everywhere, when the parents were divorced and the families fractured, “when the music stopped” – whoever was closest ends up with the task of Caregiving.
I am a caregiver for my husband whose three adult children promised to help, if and when he needed it when we married 15 years ago. For 10 years, they came and stayed, eating our food, driving our cars and enjoying our hospitality when we lived in Scottsdale, AZ. But when the going got tough, the kids reverted to their old ways and the family issues that always existed reared their “ugly” heads.
I have to say I was surprised. I thought I had some “credits” in the bank for help later after many years of hosting free winter “holidays” but I never knew that they never helped care for their mother before she died. Because my husband emigrated from the UK to Canada, they never saw him doing caregiving up close and personal in their lifetime.
I had to “shut-off the bank” and put the “no vacancy sign” out as my husband needed more care and the dementia started to get serious, and I didn’t have enough capacity to be a “hostess”. Then, they slowly disappeared. One son came one week when we moved and three years later – he still tells us that is “how he helped.” A friend told me when her brother comes to watch her Mum when she goes grocery shopping for an hour or two a week, he feels he is doing “his part”.
The periods without contact got longer for us and now that we could really use help, my husband gets a call he doesn’t understand on Christmas, his birthday and maybe Father’s Day. Lately, they don’t want to hear the details of his dementia from me – it is easier. That way, they can pretend that it is my choice not to put him in a care home and my problem.
In some cases, other caregivers have told me the family issues are about greed; there is a little money coming in from pensions and social security and if “Mum lives with you, she doesn’t eat much. So, where is all the money going?”
Sometimes, it is about decisions on care; siblings want you to consult them but from personal experience, decisions become a “dance” between you and the doctors to guess what to do to slow down the dementia. With any caregiving, the learning curve causes you have to have one point of contact for dealing with decisions on care. Hopefully, you have or are a family caregiver that listens to everyone’s ideas and comes up with the best solution.
In some cases, there were family dynamics that you may not be aware of that have come into play and it has nothing to do with dementia – it is simply a lack of character or selfishness. Let’s face it, many caregivers (like me) are “baby-boomers”, hitting their own mid-life crisis and it is still “all about us.”
You can drive yourself crazy with trying to “make the family help” so my advice is to be the example to your children. If we are fortunate enough to live a long life, they will use our model to care for us.
I am satisfied with being free with from the toxic relationships they had with me and their dad. While I don’t understand how they can let the time pass without seeing and talking to their dad while he is here, I don’t have to understand. It is not my issue. I am still enjoying some quality time him.
For more information on dementia and caregiving look for Hippygirl52 at Eons www.eons.com/groups/group/Caregiver