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.

Blessings to you, truly. This is a hard path. My husband’s PD exhibits difficulty walking with balance, speaking clearly, and now his thinking is changing. I will talk, and am used to responses from him (we’ve been married almost 50 years, and talked alot!), but now he doesn’t respond much. He seems to be quickly becoming more “in his own head”, fixated on money, and quiet. I recently read where someone said, “Connect, not correct” and it really hit me as the best route to take. I’m not getting it right all the time, but at least I have a little mantra to help me try! We both (we ALL) deserve peace with one another.

Yes on connect. I have been through the dementia part with my mother-in-law, now going through tremors with cognitive decline.
If I don’t use the same exact words he uses for something or in the right sequence, he will reverse what I said and make it a negative. Or he has trouble grasping what I am saying altogether.
Stay with it, you’ll find the “groove” of communication. And…each day is different; sometimes each hour.

That must be incredibly difficult! I don't know much about those things but that ceertainly won't stop me from having an opinion. 😉 I'm just doing a bit of brain-storming here hoping that you will be able to ponder for a bit and come up wwith some tricks that work for you and your husband. The "order of operations" Mimikat9 mentioned can be very important. If you're working a math problem that involves adding, subtracting, and dividing, if you do these things in the wrong order, you won't get the rght answer. Mimikaat9 's description of using the same words he uses is right on target. Even people who speak the same language may not use exactly the same words for tthings. If you're a kid raised in New York City and you decide to go to college at Texas A&M, , don't think for a a minute that you speak the same language. A Texas lad had a roommate who had grown up in New Yor Citiy and it was just too far away form him to spend Thanksgiving at home. The Texas lad invited him to come spend Thanksgiving with his family in Houston. It had been a long week and neither of the lads had had a good night's sleep that week. On the long drive to Houston, the Texas lad fell asleep at the wheel , and fortunately as he drifted over the shoulder of the road, he ran across lots of gravel that made enough noise to wake them both up. The startled, New York lad asked "What happened?" The Texas kid said, "Oh, I just like to run in the ditch." The New York lad said, "You like to do WHAT?"" The Texas lad repeated what he had said. and the New York lad still didn't understand and asked the Texan WHY he liked to run in the ditch. He replied,"I don't like doing it.? The New York lad sai, d"Then why did you say you liked to do it.? Finally the Texan lad realized he needed to translate for the New York lad. "In Texas, Likr to" means '"almost." I ALMOST ran my truck in the ditch. Some Uppity folks ssay "I liked to have. run". '
Mybe you can stimulate your husband's thought processes to come up with the word he needs. if your husband caan't pull a word out of his memory, is there some way to stimulate his memory.? How is he with recognizting woris n print? It's far easier to recognize thee right word when you see it, than it is r to pull that same word out of the vapor. Long before Parkinson;s I hoccasionally ave a hard time pulling particular words out of my brain. I'm a writer; I know lots and lots o of words. But, as Mark Twain allegedly said:" The 'almost right" word is to the "right' word as 'ligtening bug" is to"lightening." Close, but no cigar. { Myfavorite example of the difference between the"right" word and the "almost-right " word is the title of a t Star Trek episode. If you are old enough, you may remember the episode where the Enterprise was invaded by cute little furry animals they named Tribbles who procreated so rapidly that if they didn't stop them, they could run out of food,, air ,and water long before they reached their destinationt, The name of this Episode was" The Trouble with Tribbles." IThat title was brilliant. It was short and pithy. it had aliteration and the words rhymed. It saaid enough to grab your attention, but didn't give you enough information to abe a spoiler. "The Problem with Tribbles?"Meh.....Sometimes when I'm searching BUT I sould KNOW it whan I saw it.current state,I So, since I'm not having success, I just start flipping throuh Thesarus Rex to see if anything will jog my memory. So, if your husband can't pull it out of the fog , maybe he would know the word when he saw it. Are some of the words he might need during the normal course of the day pretty much the same so that you could just have the woron those tiny index cards and if he saw the word he was searching for, would he recognize it in print> And there's always charades . Or maybe you could say words that might jog his memory. I've even been known to go at things backwards. When all that will come to mind is a world that's almost-right, I'll try this trick. Let's say I was looking for a word for a color that's not quite white. I will take my Thesasurus Rex,in hand, and look up "white" . Instead of looking for the other words for white, I'll look at h white's antomyms. I 'm looking at antonym for black (and remember the word I want is a color that's similar to White") SO in all the words for black, I see "ebony" and that word makes me think of "ivory" (the Beatles song "Ebony and Ivory". Would your husband be able to go aolng with you ?