My partner is angry and confused: Any hints to help me help him?

Posted by Cheryl D @nmrcdigman, Feb 5 11:52am

This is lengthy and I apologize.
I am asking for any hints from folks who have gone thru this before. My husband has Lewy Bodies Dementia and has been coasting along with mild progression for about 2 years. He periodically will have a fast deterioration for a few days and then pretty much get back to his former level of cognition and physical abilities. About 5 days ago his caregivers and I noticed a decrease in everything (speech, reasoning, movements) and it has become more pronounced.
Last night was the nightmare. He didn’t become violent, but he would look at me like I was a threat and I don’t think he knew who I really was. He was extremely angry and accused me of everything he could think of (the house layout had been altered, there were people outside digging trenches, I was divorcing him, I run everything and he doesn’t know what is happening - which is actually true). I checked (home test) for UTI which was negative, I checked his 02, which was low, so gave him a whiff of canned 02 and this morning repeated it with a squirt of Albuterol aerosol that had been prescribed for shortness of breath.
That brought his 02 level up, but he’s still confused and angry.
I have a call into the local neurology clinic (we live in NM and have abysmal medical availability). There really isn’t a neuro available in the Memory clinic, it’s a CNP, which I did not like on the first and only visit we had with her. We will get a great neuro and they only last a year or two and move out of state (high malpractice premiums, taxes, cause people to leave).
After 3 hours I told him we could discuss his feelings in the morning, which we did after breakfast, and he’s not as angry, but still believes everything he did last night.
I don’t know what else I could be doing. Any suggestions will be appreciated - has anyone else had these experiences?
Peace, Cheryl

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Since you noticed his oxygen levels were low, even a slight dip in respiratory health may be triggering this confusion and paranoia,
While you wait for the clinic, prioritise his physical comfort, and try not to argue against his reality. His brain is fully convinced these delusions are real.
If the anger escalates or his breathing doesn't stay steady, go to the emergency room just to rule out underlying issues like pneumonia that a home test can't catch.

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I know that Lewy Body Dementia has very distinct characteristics so I hesitate to share ideas that may not be suitable. The one thing I would suggest is that you call the Alzheimer's Association helpline. Here is a brief description: 'The Alzheimer's Association 24/7 Helpline (800.272. 3900) is available around the clock, 365 days a year. Through this free service, specialists and master's-level clinicians offer confidential support and information to people living with the disease, caregivers, families and the public." They would probably have suggestions for things you can do in the short term.

Ok, I changed my mind. A few ideas for managing the kind of mood that you describe. The concept is to break through the anger with love, distractions, and calculated exits. This approach can disarm him but it also reduces your stress level so that he doesn't pick up on and react to that. If I cannot get my husband out of a dour, resistant outlook I will explicitly stop, have us take moment and then do something like hug him or look into his eyes and tell him that I love him and that the fact that we are together and love each other is the most important thing. I often use music as a replacement focus area. if he is stuck in some negative rut, after trying to resolve I may tell him that I will be back in a while.

I do wish you the best. I know LBD has big highs and lows.

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cThank you, these are very terrific reminders. It is exhausting. It’s never lasted this long before. And I dread the nights. Peace C

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Profile picture for Cheryl D @nmrcdigman

cThank you, these are very terrific reminders. It is exhausting. It’s never lasted this long before. And I dread the nights. Peace C

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@nmrcdigman, just checking in. How are you doing? How are things going with your husband and the nights?

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I’ve arranged for night care and as soon as we adjust to that I think things will improve.
His neurologist also thought because of his increasing hallucinations and delusions we should look at Hospice, so he has transitioned to it. We’ll see how this works out.
Thanks for staying in touch. C

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I found with my husband, he responded much better to caregivers than he did to me. When your hubby is up and about at night, the helper will get him a snack, watch TV with him, chat, laugh and tease him a little.
In our rural area, the honorific “Pap” is a general term of respect used by caregivers for elderly gentlemen. My often confused husband interpreted being called that as this was a safe, caring, “must be a friend” person, “maybe she’s one of my grand-daughters”. If there is something similar in your area or maybe even “Mr. (first name”) may help for the caregiver to use.
My husband turned night and day around regularly. If on a particular night, when the helper comes, I suggest while he’s distracted, you quietly get out of sight, go to your room or one of the other bedrooms and go to sleep. I got to be a big trigger for my husband’s anger, often the “You’re not the boss of me” mode.
The agency sending the help will have filled out a care plan with you of where things are, what to do. I strongly suggest doing it by quietly by phone (out in the car or down in the basement if you have to), he can become very upset that “you are talking about me”. On the Care Plan, have them write in where you’ll leave a note for a daily update for the helper- under a magnet less out of sight on the fridge? In the fridge? Then, write any notes out of hubby’s sight beforehand. Don’t place any notes in the Care Folder, my hubby understood that folder had people writing things about him, he carried it everywhere with him, didn’t want me to look at it, he wanted visiting staff to hand him their notes and he would put them in, he couldn’t understand written words, but would look over the notes carefully.
Something to know about Hospice- there will be a lot of people coming. There are strict governmental requirements for Hospice providers, because once on Hospice, they are paid a high daily rate for every single day the patient is on service, even if it’s a day no one comes. In exchange, the provider is required to offer the services of a hospice medical director, skilled nursing, certified nursing assistant, social worker, chaplain, hospice volunteer, and OT and PT , as long as goals are palliative and not for rehabilitation. My dad was very annoyed at first at all the traffic, but he grew to quickly enjoy the attention and all the nice people who came.
The CNAs can do any activities related to his care within their time allotment-give him a shower and wash the towels, wash his clothes, wash and change the sheets on the bed, make him a snack or meal, give a foot massage with lotion.
PLEASE think about a weekly task schedule and hand off whatever you can to these wonderful people, who have chosen this work and have received special training in it. Know also that this is a profession primarily of young women, so there will be young women issues that cause call-offs (the babysitter cancels, the car won’t start, the toddler has pink-eye and daycare won’t let him come). The agency will work hard to send a replacement, but things happen.

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Its not what happens to you, but how you handle what happens to you. Boy do I wished they would have had a 'care taking' class in college. Fortunately my spouse will occasionally give me a hug and "I love you" but still proceed to take all her clothes off their hangers, throw them on the floor, and say, "Throw these away, these aren't mine." These are the clothes we've been buying for the last two months.

I tell myself, as a caregiver, doing twice the work, at least I'm saving $300 today. I might have to spend it tomorrow. So self, be kind.

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