My mom came home last night from a nearly 2 week long hospital stay and now has to wear with life vest defibrillator for 3 months before re-assessing her heart function. I am being driven insane and am losing sleep over this device. She keeps forgetting what it is and thinking it is a bra and removing it. I am almost at my wit's end after less than 24 hours. Help.
Now down to brass tacks.....
What is your plan?
She has dementia.
Would you put her through an operation to place a defibrillator?
Would she recover well from it?
As the dementia progresses would you have it deactivated so at end of life it does not continue to activate?
Due to the surgery she will probably decline further due to the anesthesia.
(in your profile you do not mention her age nor how far advanced the dementia is)
I think...knowing what I know and dealing with my Husband and seeing his decline I would probably opt not to have a defibrillator implanted. (Boy that was difficult to admit....)
I'm doing my best to contain my irritation that they have of course been designed with men in mind. Of course they have, it's natural to cater for the larger user group; but LOOK at them. Where are you supposed to put your boobs? "Oh, we didn't think of that..."
Anyhooooo (in my defence I'm testy about this because we're also currently dealing with a lady whose upper arm splint is one-size-fits-all-men and has rubbed her underarm to ribbons, and another lady who's been told she's too short to have a toilet frame that suits her. No! She's not too short! The frames are made too tall. Grrrrr.....)
The vest is "worn under clothing" (i.e., yes, next to the skin). It fits around the chest, and its back contains the defibrillator mechanism, which includes packs of gel for in case it has to do its thing. This is all wired up to a monitor pack which is worn "on the belt" (which of course we ladies usually wear over our nighties). All in all, a pretty hefty piece of kit for a little old lady to be trundling around with.
So the cardiologist airily tells the OP that her mother must wear this simple device or she might die suddenly, and sends them both home to cope with it.
It's at moments like this that I long to enforce a rule by which anyone who designs or prescribes a medical appliance must be obliged to wear it for a week. Or, as in this case, keep it on a person who is very keen to take it off.
My Mum with mild cog impairment had enough trouble with a 24hr blood pressure monitor.
The monitor was certainly worth trying - you were not to know how Mom would react. Mebird, I do sympathize.
I think many of us were brought up to always take the advice & do as we are told by professionals. These days (painful family member that I am) I do ask more pesky questions & ask for alternatives.
Is the monitor an actual defib? Or to monitor the heart rhythm? My Mum has a Linq implant monitor that sends info to Cardiologist. Was a very short procedure to implant. She knows it's there but not intrusive in any way.
Anyway. So here you are 24 hours in to a three month trial of what sounds like a highly impractical idea for a dementia patient.
Step one, take a deep breath.
Step two: get perspective. What is the device there *for*? It is a defibrillator. In the event that your mother's heart rhythm goes skewiff, it will kick into action. If she isn't wearing it then of course it can't work. But...
How likely is it that her heart rhythm will go skewiff? - because if it isn't very likely, she won't come to any harm if she isn't wearing it for a few hours.
In your place, I think I'd get in touch with whoever prescribed this appliance, explain the difficulty, and ask two things: 1. is there an alternative? 2. if not, on a scale of one to ten, how essential is it that the vest is worn 24/7?
Also: does this thing have to be worn next to the skin? How comfortable is it? It might be worth seeing if anything can be done to make it less irksome for her.
I myself happen to have a very high genetic risk for dementia. I have made it clear that if I indeed develop dementia, I want comfort care only. I don't want to be kept alive by treatments I can't understand or appreciate any more. I want to pass away peacefully when it is my time.
I hope talking to the doctor very frankly tomorrow sheds some light on how best to proceed. My best wishes to you and your dear mom.
I was trying to point out to you that the answer doesn't have to be "yes, doctor" when you have a parent with dementia.
You said you are being driven insane. It sounds like your mom is finding the device uncomfortable and bothersome. It sounds like a bad solution to a serious cardiac issue. I still suggest calling the doctor in the AM and saying that your moth eff is unable to comply with wearing this device due to her dementia.
When you have a parent with dementia, there is only " the least bad choice". If you haven't already read it, I highly suggest reading Atul Gawande's on Being Mortal; What Matters in the End.
Please dont refrain from asking questions, Mebird. There are really great and supportive folks here. It's the middle of the night here, but I'm sure some else will be along with better ideas in a couple of hours.
Frankly, after my mother was diagnosed with dementia, every time an doctor suggested a test a procedure or an intervention, we sat down and thought long and hard about the advisability about extending mom's life, which had increasingly diminished quality.
We did assent to a pacemaker at one point; we actually asked mom whether she wanted it or not and the doctors were able to do it with a fairly quick overnight sedation/not anesthesia procedure. We would have said no to something like what you are describing because it would have been too confusing and anxiety provoking for her.
Have you considered asking for a hospice evaluation?
If this device is bothersome and not curative, I would allow mom to take it off, call the doc in the AM and say "no, this isnt working for us".
Definitely will refrain from asking anymore questions here. Thanks for that Barb.