Managing my husband with Parkinson’s and dementia

@b37027 Welcome to Mayo Clinic Connect! I’m so glad you found this site. You should be able to communicate with others in your same situation! It must be so hard helping your husband like this. I’m sure you never counted on this. There are other discussions about Parkinson’s and dementia. Just go to the top left side of this page where it states Caregivers:dementia and click on it and you will be taken to the table of contents for this entire support group. You’ll find lots of other discussions that will interest you.

The communication problem isn't a lack of trying on his part, and it isn't your fault either. It's a symptom of the disease where the brain just can't process the instruction.
The resistance you feel is something very common for a caregiver. It feels like a failure, but it is the opposite. Bringing in help is a way of caring for yourself and him. You shouldn't feel bad doing it.

Hi b37027,

I, too, am like you--a person who resists bringing in help for my husband. I had no choice, however, but to accept help: I started breaking down and realized that I if I ended up in the hospital or care facility, I would no longer be able to care for my 83-year-old husband. (He is immobile due to his back issues; and he has Alzheimer, vascular dementia and Lewy Body with Parkinsonian features.)

A lot of people don't like strangers coming into their homes for various personal reasons; but you will love having help once you find the right person(s). The process of finding caregivers is arduous. You can begin by going to websites for locating caregivers near you. For example, see AgingCare.com and Care.Com.

Accepting outside help is part of self-care.

Good luck to you and your husband,
George's 76-year-old Wife

@b37027, how are YOU doing today?

I guess not too good. The last couple of days have not been good. I am so angry at myself for losing my temper with my husband when he can't do something. I was hoping that bringing in some help for the first time this past week would be what is needed, but in reality, not sure this is going to work. Neither I nor my husband felt comfortable with the caregiver. I am going to give it a little more time as the company I am using said they are hiring to find a permanent caregiver for us and in the meantime they are sending temporary help till they find a good fit for us. I am sure things will get better but right now I am just tired, but thank you for asking.

@b37027 Hello... I am new to this support group. I identified with your post immediately! I, too, was reluctant to have someone come into the house, but I lucked out with a wonderful woman whose husband died just over a year ago. (He had caregivers and she knew what an important role that is, so she decided to do it for others to help with her bereavement.) My husband is still not keen on the idea, but this is for me!
My dilemma now is this: My husband is 86, has Parkinson's from drinking the poisoned water at Camp LeJeune way back in the 1950's. It took over 20 years for a diagnosis. Now he had neuro-psych testing, and the examiner had the nerve to tell me that a diagnosis of dementia would make no difference. Well, it certainly would have when my husband had a choking spell and ended up in the ER. After IV's for an hour and a half, he was able to pass the piece of food. The Imaging person came for him to have a CT scan, and he threw a fit and refused to go TWICE.
When the report came back, the interpretation did not specify dementia. I have read that Parkinson's can skew these results. I am open to suggestions from anyone who can help.
Meanwhile, hang in there. You just need the right person. I will keep you in my thoughts.

One can have PD with dementia and PD without dementia.