For those who care for someone with Parkinson's disease
[Forum] [Home] [Help] [Search] [Register] [Login] [Books] [Commentary] [Contact] [Donate]
You are not logged in


Topic On the same topic...Caregivers Go to previous topic Go to next topic Go to higher level

By Daisy123 On 2016.08.12 05:43
Can anyone tell me how to persuade your loved one to allow caregivers into the home. Just recently I managed to get a lovely lady in for 2 hours a week to stay with DH whilst I take care of errands.

It's a free service provided to give me peace of mind that he is not freaking out while I go out for a short while.

We arranged that she would come at 10am - 12 which means that all the personal care has been done and DH is usually at his best with medication. All she has to do is keep him company.

Well it has lasted 3 weeks. Yesterday, after she had gone, he announced that no longer wanted "that" woman in the house and she is wasting his time and keeping him back from his "work". His "work" involves shuffling his files around for the millioneth time as his executive function is sadly diminished.

Unfortunately, I can't even suggest that she could help or get involved in any way as he is paranoid as some of his "work" is under to copyright and could be stolen.

I can't tell you how much it meant to me to get a break from the routine of "working" with him where we are locked in a room doing/sorting the same things over and over, without making any progress.

What he wants to do is simply beyond his mental/physical capabilities anymore, but the dream of it is the only thing that gets him out of bed every day and I can't bear to shatter that dream.

By VioletV On 2016.08.12 17:39
Idea:
Tell him that you are asking her to do things for you since he doesn't need her. Work it out with her to simply be around doing things for you -- folding laundry, sweeping floors, and then when he needs help make yourself scarce.

I also wonder if his behavior isn't a version of punding, which can be related to dopamine dysregulation.

Here is a summary of an article about it:

Punding in Parkinson's disease: its relation to the dopamine dysregulation syndrome.
Evans AH1, Katzenschlager R, Paviour D, O'Sullivan JD, Appel S, Lawrence AD, Lees AJ.

Abstract
Punding is a term that was coined originally to describe complex prolonged, purposeless, and stereotyped behaviour in chronic amphetamine users. A structured interview of 50 patients with higher dopamine replacement therapy requirements (>800 levodopa equivalent units/day) from 123 unselected patients with Parkinson's disease (PD) from a PD clinic identified 17 (14%) patients with punding. Punding was acknowledged as disruptive and unproductive by the patients themselves, but forcible attempts by family to interrupt the behaviour led to irritability and dysphoria. Punding was associated with very high doses of dopamine replacement therapy often related to a pattern of chronic inappropriate overuse of dopaminergic medication. We believe that this is an underreported, socially disabling phenomenon that is commonly associated with the syndrome of dopamine dysregulation and is phenomenologically distinct from both obsessive-compulsive disorder and mania.

Is he being followed by a Movement Disorders Specialist? Have you described this behavior in detail to his doctor?

This is all so very hard...good luck to you and keep coming back here. It helps.

By Daisy123 On 2016.08.15 03:57
Thank you Violet.
Yes, we are having a break this week anyway as our lady is on holidays. If he still refuses her next week I'll have to come up with some story and hope it works.

I am familiar with punding and I definitely agree that there could be more than just an element of it in his behaviour. He always tended to be a tad OCDish anyway but that always seemed a good trait lol! He has shown to be extremely sensitive to any change in medication and I've lost count of amount of times he has had "episodes" if the drugs were changed.

However, he doesn't display any of the hypermania or any other compulsive behaviours and his lack of executive function and other cognitive problems are across the board, even when he is on a minimal level of drugs.

I have spoken to his MDS but after 10 years there's not a whole lot of advice they can give. We, the caregivers know much more about our loved ones and their reactions than they do. Mostly they just make sure that the situation is maintained and say.. "see you in 6 months" And so on it goes...

By Daisy123 On 2016.09.08 07:31
Here we go again.. I took the suggested route and calmly explained that the caregiver was for me to have peace of mind whilst out. He seemed ok (surprisingly) with that and I thought "that was easy" . But I spoke too soon.

For the last couple of weeks he has only just tolerated "that women" in the house and I really thought it might work. Today was the first day that he was on his own with her, our son is back in school and I went out to get some groceries. Within 45 mins he had called me in an agitated state demanding that I get home.

When I got home, the caregiver left and all hell broke loose. He got it into his head that she was gonna make a sexual assault complaint about him to get all our money (what money I'm asking??) and he wants to seek legal advice. Of course I cannot argue with him in this state, I did try to reason with him but it's impossible.

Now I'm the world's worst person for having foisted this situation on us and he in bed sulking, anxious and extremely angry with me, all of which is terrible for him, but what can I do?

I know that this paranoia is another ugly side of this horrible illness. I'll wait til this storm passes, but I think I'll have no option but to cancel the caregiving hours..(sigh)

By lurkingforacure On 2016.09.08 08:45
Well, if he won't let you get some help at home, then could you take him to the help?

When things are calmer, perhaps you could explain that you really need time to get things done, etc. and that if he is really uncomfortable having someone in the house, then the only other choice is for him to go to a center for a few hours. Maybe if he has some input into the choice, he will be happier about it.

Or, if he hates that idea too, then kindly explain that you will have to try another caregiver in the home. He should understand that you not having help is simply not an option.

The way I have had to explain things to my husband, so far, is that his illness is simply at a point where we have to do X (and there is no denying this, although he tries). Usually there is safety involved, and he can see that if we don't do X, then he could get hurt, perhaps badly. So he reluctantly agrees, but we've had more than a few heated debates. I have had to tearfully hold my ground, because it's hard to give up what you've done/had for decades, but safety simply has to come first. And, I would suggest, the caregiver's sanity and well-being.

By Daisy123 On 2016.09.09 07:46
Regretably, there are just no services available for someone under the age of 65 and he has a long way to go til then as he is, like your own Dh, very young (56) to have the level of impairment that he has. He is completely unaware that there is anything amiss with his behaviour, which is a blessing in some ways, but makes things more difficult in others.

He would refuse point blank to attend any services for the elderly even if I could get access anyway.

By makrivah On 2016.09.09 14:04
Would he consider a male aide?

By lurkingforacure On 2016.09.09 20:20
I was going to suggest the same thing, a male helper/aide. Unless she were in exceptional shape and of great strength, I don't think a female aide could help lift my husband if he fell or needed help getting up, and I would not feel right in asking that.


© 2003-2016 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you