This Dementia Caregiver Nightmare Has Just Begun

For reference, I have just been put into the nightmarish position of dementia caregiver for someone who shall remain anonymous.

This Dementia patient is in early stage progression with additional progressive aphasia, which is the Dementia itself. Because of the aphasia, I have a heck of a time figuring out what they are saying to me because they use words that only "beat around the bush" to describe what they are trying to tell me, since they cannot recall the descriptive words they are grasping mentally for. And then they accuse me of never knowing what they are talking about. And then they get full of rage and start screaming and coming towards me with their hands forward in frustration. So then I find myself feeling threatened by their actions so I back away from them to keep safe. This situation is truly a nightmare. I feel compassion for all caregivers and dementia patients as well.

I've come here to this topic page because I feel so overwhelmed and this nightmare has only just begun! Perhaps others here will understand.

oh no @Fluttrbye this sounds like a lot to handle. I would check with support organizations like Alzheimer Association and or local Senior Center to talk to social worker to get local resources.

I have some experience with dementia people but not violent and aggressive. You need a safety plan if this gets out of hand like calling emergency services.

Tell us more

CANDC

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Right now, I've made a to-do list of what I need to do as this person's dementia progresses, @CANDC
Since this is at the very beginning, I feel like I am totally inadequate as a caregiver. It's definitely a major learning curve for me.
I have already begun to research local resources.
I would like to keep this person at home, but if that becomes impossible for me, then they will have to placed in a facility. I truly don't want to do that. I'm praying this person will become stoic or something as their dementia progresses, so they can be managed better.
Thank you for your kind ear @CANDC as it's truly appreciated.

I'm also trying to find a free counselor who works pro-bono, because I'm going to need to vent to someone throughout this nightmare . I have no one here to do that with. All my close friends are out of state and so are family members. So I feel isolated.
Anyways, thank you again. Take care!

Thanks for your kind words @Fluttrbye - I hear you about needing support. Finding support for yourself can be essential to good mental stability. I write down all my local resources and support grouips and then I write down all my potential online support groups like doing a google search using these words "support groups for alzhemier caregivers" and when I scroll down there are a number of options available.

These people I have had contact with and I find them to be a good resource Support Groups | Alzheimer'''s Association The most important thing to learn is to be in the person's world - not try to convince them of the world you live in. If they say how is a dead person, say they are away on a trip today for instance. I wish I knew that when my dad was in the midst of his dementia but I did the best I could to help him when I visited him in the nursing home. My mom could not take care of him and I found it rough just to spend a week taking care of him before when he was at home.

These may give helpful tips on what to say or what not to say
6 Things to Say to Someone With Alzheimer’s (And 3 Things to Never Say)

Human Verification

And of course posting here on MSF is another place to share your frustrations and good days as well.

The one thing I would say is take care of yourself first. Eat well, sleep well or nap (if you sleep in the same house and are never certain when they will get violent, lock the door or put a chair up against the door), keep contact with people, and have adequate support. Some people sacrifice themselves trying to do everything for the person they care for. Do what is adequate for them and save yourself for the times when things get worse..

CANDC

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Thank you for all the good advice and information
@CANDC as it's all very helpful.

I certainly don't want to sacrifice myself, my physical and mental health, just to give care. Of course I care about this person, but I don't want their horrible condition/diagnosis to destroy me.
I suppose that's my very strong will to live and protect myself. It also sounds selfish, but I will have to be in order to survive this current reality I'm faced with.

Again, @CANDC thank you for listening. Take care

I hear you @Fluttrbye - you said
If you ever fly on a commercial airplane, the stewardess says "Put on your air mask first." It is not selfish. If you pass out you cannot help the ones who need your help.
So it may sound selfish but when your intention is to help the other person, taking care of yourself is a very compassionate act.

CANDC

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It's a terrible disease. I'm sorry you're dealing with this. My mother has dementia and my dad is taking care of her.

I think it's good you're seeking counseling.


You should definitely seek out other resources such as home health assistance or respite care. Your area will likely have an agency on aging or similar that can guide you.

In a lot of cases, especially with just one caretaker, it really gets to be too much to care for someone at home as the patient declines. When you think of it, at least workers in a care home get to go home after their shift and get a break. So, you may have to see what options would be available, especially if they get violent.

Sorry to be late replying. Aphasia can be so frustrating for the person affected and the caregiver trying their best to understand. I’ve included some links that might possibly be useful.

How to communicate with a person with dementia | Alzheimer's Society

Communication challenges and helpful strategies | Alzheimer Society of Canada

Having said that, you could and indeed might already follow the communication advice perfectly and still get nowhere. I hadn’t heard of speech and language pathologists before (over here we have speech and language therapists not sure if the same) but I’m curious about that, might be worth investigating?

Lastly if it’s appropriate shared humour can go a long way. I normally laugh at myself when I can, it certainly calms things down.

Don’t be hard on yourself this stuff isn’t easy.