I was going to proceed with the progression of life with mom and dad as their health spiraled out of control but a good thing happened yesterday. I was a guest speaker (I suppose that’s what you could’ve called me) at an online Twitter chat – #AgingChat to be exact (I do recommend those of you with a Twitter account to follow it and @Beclosedotcom) The topic was “Is it Dementia or not?”
It was a great chat but what pinged me the most was two questions: 1. How do you tell the one who is ill that they are ill and 2. How to you get family members to help out. For question #1 the best things suggested was to either let their doctor tell them or to sit down with them in as calm a voice and manner as possible and try to let them know your concerns without sending them into a panic or giving them news that may be interpreted in a very very bad way. Remember, when trying to tell someone you think they may have some serious memory issues that can be absolutely terrifying to them; the could react angrily or burst into tears or any other combination of emotions.
In my case when I tried to tell mom as awkwardly as I could at the time not knowing what the hell I was dealing with anyway, mom nearly bit my head off! She became like a cornered animal claiming I was out to get her, get into her business, and try to say she was crazy. I backed away as fast as I could and gave up trying to convince her she needed to see a doctor. I wish I had had more resolve to keep plugging away at getting her to a doctor.
But what about asking for help from family members? In some wonderful families there occurs this thing called a family meeting where everyone who is/will be involved get together and they hash out how things will be handled. Sorry to be so cynical but in my lifetime I’ve only read about this; I’ve never heard directly from anyone who had a cohesive family unit deal with someone ill or with dementia in an evenhanded manner.
Nope! What I dealt with and what several people I’ve known have dealt with is one person being THE responsible one with others helping occasionally (sometimes after being upbraided by the responsible one) or with family members either saying they will help and don’t or just make all sorts of excuses to not help at all. There is always a blow up or two..or three or four when you have these family dynamics going on.
When I first tried to talk to my siblings about mom I got a bit of a brush off with phrases like “Well she’s old what do you expect!” and “Heck, I forget things and repeat myself too!” I’m sure some of you have heard things like: I don’t have time to take off work to help. I’ve got a family at home to take care of. I don’t like the looks and smells of a nursing home. S/he isn’t going to know I visited or not (cringe). I live too far away. This also may apply to some spouses/significant others. Sigh…
At first I had one of my sisters help me out pretty often but as time went on that lessened, another would only come visit mom if she went with the other sister, and two lived out of state and only were able to make phone calls. I appreciated those phone calls. They let staff at the nursing homes know that I was not alone in caring about moms care.
Ultimately everyone I’ve known who has been in this situation tried with family members the best they could until an explosion or until they reached a point where they tired of dealing with the stress and drama and just dealt with it themselves. About this time is when hired help (if affordable) such as a visiting nurse or aide or adult day care comes into the caregiving equation or the caregiver gets very very tired and stressed themselves.
But as I’ve said before, you have to push through and you will push through. Trust me on this. Ask the family doctor for tips on how to bring up your health concerns to your loved one. Seek the assistance and experience from agencies such as Alz.org who have a hotline number that is 24/7. Find either an online or in person support group. And try to talk to family members about helping out or what to do but know how far to go not so much for their sakes but for yours!