He screams at me to "leave him alone" and to “stop telling him what to do”. Problem is that he needs help with everything (bathing, eating, toileting) yet he says to go away and leave him alone. Any advice?

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My husband has posterior cortical atrophy (back of his brain dying off) categorized under a rare form of early onset Alzheimer’s but similar to vascular dementia. He’s only 59 and in the 8 years since he’s been diagnosed has reduced to having the abilities of a 2 year old. Very difficult to communicate. I experienced something similar to what you are saying. First, I would tell anyone dealing with someone with dementia to imagine yourself trapped in the body of a 2 year old where you can’t trust your eyes to be able to pick up something, you can’t trust what you see because people come and go, you can’t distinguish between dreams being real or fake, and you can’t even trust what you hear. People say one thing but you hear something else. The world would be a scary place. Second, the best thing you can do is to help the person feel safe and secure. If someone is shouting it’s because they don’t feel you are listening. Try something different. They still think of themselves as an independent adult - don’t make them feel like an incompetent child. I recommend trying to assist - not make them do something. I know this is challenging when you have to feed them or clean up after using the toilet. I found one that works is to tell my husband everything I’m doing and invite him to participate. It’s time to eat dinner. I made some food. Are you hungry? If he doesn’t respond, maybe now is not the best time for him to eat. I put it aside and try about 5-10 minutes later. Would you like to come sit down at the table and eat now? I take his hand and if he doesn’t resist, I lead him to the table and hold the chair for him and gently guide him to land on the chair. I found that using the bar stools at the counter is much easier than a dining room chair. I can push him up to the counter, and I used a weighted tray to bring the plate up to him so he can lean over. I find finger food that he can feed himself. Chicken nuggets, hot pockets, french fries, fish sticks, apples, strawberries, etc. And if he does resist, I let him just walk around and try again in 10 minutes.
Yes, my husband will tell me to leave him alone at times -it means I’m fussing over him and he needs space. He can’t process all of it. Sometimes it means I’m trying to get him to do something he doesn’t want to. I have to evaluate how important is it in the big scheme? The only non-negotiable to me is cleanliness. I try to do that in small doses so it’s less invasive - use warm cloths, warm water, don’t remove all his clothing -anything to feel safer. I have to meet him where he is at and not try to make him into something else. He’s not a child - he just doesn’t understand his world.
I know it’s hard. Don’t let yourself be abused - I walk away or close a door between us until he calms down.
I wish someone had told me this- if there is an increasing amount of violent behavior, sudden rages - look for something causing pain. My husband couldn’t explain where he hurt -it’s like he’s disassociated from his body. I’ve gone through this 3 times now - the first time we finally found he had developed an infected abscess on his tailbone that was just eating away at him. 2nd time his leg was swelling -doctors said just edema. No it wasn’t - he had a blood clot in upper thigh radiating to his groin with terrible pain. 3rd time -he had stubbed his toe and the toenail got pulled up and became infected. He never pointed to it and you couldn’t tell by glancing at it when i changed his socks. It wasn’t until I saw the pus that I realized it. So look very closely at everything -all the nonverbal cues.
I will close with this. No one can decide what’s right for you except for you. It takes courage, perseverance, and patience. Not everyone has the temperament to be a caregiver - it doesn’t just come naturally. It may require more of you than you are able to do. Just recognize what you are able to do and get help. And maybe he ends up in facility. But they will not understand like you do.
Helpful Answer (2)
Reply to Traveler10000

Bathing, eating, toileting, and taking medication are all things that MUST get done whether the person with dementia wants them or not.
Your husband is verbally abusive to you. Maybe you being his caregiver is not the best choice for either of you.
Try getting some professional hired caregivers to come in a few hours a day. Your husband may be more receptive to accepting assistance from a hired caregiver.
If he doesn't, then it's probably time for facility placement.
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Reply to BurntCaregiver

I had hard time bathing mom before but figured out that it was easier when she was in a good mood. She feels better and calmer before noon, so after she eats her breakfast we listen to her favorite songs for about 30 minutes and then I ask her if she wants a shower. If she feels good and safe with me she usually takes a bath with my help. If she declines, I do not try to persuade her but simply wait for few minutes and ask her again. If she keeps declining until noon, I give up and hope that she will be in a better mood tomorrow. I actually do not know how long this tactic will work, since she is getting worse everyday.
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Reply to momveronica
Traveler10000 Jun 25, 2021
I had similar issues with my husband. It’s good that you figured out the “good time” and maximize that. Music is a fantastic idea! My husband began an aversion to water in general-couldn’t even put his hands under running water. I think it must be related to how his brain processed signals. Much like many autistic children can’t stand running water on their skin. I switched to washing with Scrubz daily where I only did top half and then the bottom half when using toilet, and then once a week doing full shower but with heating up the bathroom first and using rainwater faucet for gentle warm. And covering him in towels any part that wasn’t being washed. I still need my son to help me but this is a compromise and minimizes his discomfort as much as possible.
We tend to make a lot of concessions for loved ones who suffer from dementia. A lot. Too many, in fact. Would you tolerate screaming and verbal abuse from your spouse if he didn't suffer from dementia? What constitutes 'too much' in terms of abusive behavior? Is it going too far if he hits you? Or is it okay b/c he's 'suffering from dementia'? Those are the questions you need to ask yourself now, as the VD is progressing & the behavior is worsening.

Call the doctor and get him checked for a UTI, which is always recommended. Once you eliminate something organic, then you have to attribute the behavior to an exacerbation in the dementia; a step down. Then you have to ask yourself how much you are willing to tolerate? When will it all be too much for you to handle by yourself? When will you call an agency and hire in home help? Or, if that doesn't work, when will you line up Memory Care ALFs to consider placing him in?

Abuse is not okay, even for a person who's suffering from dementia. It's never okay to be the recipient of physical abuse such as hitting or pushing or hurting you in some way. Just keep that in mind as you consider all of your options moving forward. My mother is 94 and lives in Memory Care Assisted Living for the past 2 years. She needs help with everything yet still insists she can 'live alone' which would be laughable if it wasn't so sad. She's past year 6 of what's likely vascular dementia herself, and only gets meaner and nastier with every passing day. Her needs increase constantly as well, and she's fallen 34x over the past 24 months alone. Dementia is truly a hateful condition in every way, shape and form. My father died before he got to see her in full blown dementia, and he was ready to leave her after 68 years of marriage before he did pass away, thanks to her behavior, and that was in the early days! It's no joke how they act, that's the God's honest truth. I had to leave her presence today because of the contempt she was treating me with.

Wishing you the best of luck devising a workable plan that takes YOUR needs into consideration, and not just HIS.
Helpful Answer (5)
Reply to lealonnie1

I fear this reaction from my DH aunt one day. She can be this way now with certain people. This morning she was scratching the hospice cna who came to bathe her. That was a first. Her weekday bather she was thanking profusely last week.
I am suspecting a UTI with aunt and will start antibiotics tomorrow if her nurse agrees.

Call in hospice to evaluate your husband for additional care. This will give you more support and he might listen to them.

With aunt, 15 min later can sometimes give you a different person to deal with.

It may be doable to care for a person with dementia alone but it isn’t wise or even the best care for them.

This is your husband so I assume you are similar in age. You must be tired. I’m so sorry for you both that he is so distressed.
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Reply to 97yroldmom

Do you have any outside help coming in to help you with him? If not, perhaps it's time to hire some help to assist him and you, so you're not taking the brunt of his frustrations. You might want to talk to his Dr. as well, if this behavior is new, as they can probably prescribe a medication to try and calm him. Best wishes.
Helpful Answer (2)
Reply to funkygrandma59
againx100 Jun 20, 2021
If these ideas don't work, maybe it's time for a nursing home. This is too much.
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