Anyone else here dealing with dementia As a care giver?

I work with patients that has dementia, been doing it for 4 years now.
If there's anything you wanna know, you can ask (even tho I don't know everything^^).

You should have a support system, someone to talk to that can try to guide you and your husband thru it, as well as help him on a regular basis, so that all the responsibility isn't on y'all.

If he goes to a home, try to make him a photo-book, with pictures but also details about the pictures, to help him remember - names, dates, places, maybe something funny that happened, life-events. Tell the caretakers to regularly hand him the book, and maybe look thru it with him.

If he has any hobbies, or had any hobbies, you can try to introduce that back into his life. I have one patient that used to paint amazing pictures when she was younger, and she has them on her wall. So I got her painting supplies, and every time I'm in charge of her group, I bring it out and write down what she should paint, this has made her sit up after breakfast and paint, then talk, read and stay social, instead of going back to her room to sleep the whole day (she used to do that because she was bored).

With communication, it can be tricky and everyone is different. I have some patients that I can rationalize with, others I just go along with their pov. As an example, I have one patient with psychosis as well, and whenever she gets angry about something, instead of telling her she's hallucinating, I'll go and say something like "Aaagh, that's so annoying! I totally get why you're mad, they're idiots right?" then when she connects with me (on her level), I'll bring her back down to my level by asking her to get a coffee with me, so we can talk about it (she loves coffee), we then go sit down, and by the time she has her coffee she's no longer angry, and can talk about something else.

I've told families that "if she's on a boat, so are you and we'll get there tomorrow", and it's usually always a bit surprising at first, because it's hard to understand how someone can sit in their room and think that the boat is moving too fast. But sometimes you have to join them into their reality to be able for them to connect with you in your reality (if that makes sense).

It's hard, specially when it's a loved one, so make sure you take good care of yourself, and don't feel guilty for checking in with yourself and asking what you need (and doing that).

My mom had dementia. You definitely need to take good care of yourself I'm glad you know that 🫂 Getting outside help becomes crucial at some point, but mainly keeping him safe and calm. Having someone around doesn't always help him mentally depending how far he's progressed. But help doing tasks and hygiene. Talking to him and listening to him. Ask him questions and just listen even if it's weird. Never argue, they aren't able to understand. It'll just stress him out.

And stay strong. It's a very hard road ahead and you must remember all the wonderful memories you shared. Know they are still in there, even when the person you love seems gone.

Be well 🖤

Every case is different but from what I experienced from caring for my wife things that should have been done differently. First and foremost take care of yourself. It may feel selfish knowing what the patient is suffering but burn out is real!
Second, make sure you have a support system in place to assist with care. Don’t try to do it all yourself.
Third, read study and ask questions of other care providers. Learning what to expect and not be surprised.
And finally, don’t feel guilty. You will second guess yourself when it passes. Did I miss something or what should I have done differently are common.
My thoughts are with you as it is a difficult situation.

Yes, self care is key in being able then to give to anyone else..
My mom is caring for a lady with dementia, it's her job at the moment. It's not easy but she's utilising lots of humour and it works 🙂
It's tough, her husband has died and my mom needs to remind her all the time, whenever she's asking where is he. But my mom says, whenever she tells her he's died, she never replies and moves to saying something else, as if in the universe she's living, that's impossible to have happened, she doesn't even consider it.
She's living with her daughter but they're paying my mom part time so her daughter doesn't have to carry it all on her.

(Raising hand)

Yes.

There are different causes of dementia and each has its own characteristics, sort of. It’s possible to have multiple types and somewhat difficult to diagnose to find the exact underlying disease. I would like to think that some are reversible, but have never met anyone who was cured or even got slightly better. Does he have a diagnosis? Or a likely diagnosis? Alzheimer’s? Parkinson’s? LBD?

It’s smart to start getting ready because it will likely progress. And there will likely be a time when he has to be constantly watched and looked after. Some dementias come with other physical ailments that affect muscle control and the ability to stand or walk without assistance or even walki with a walker. That means that people with dementia are at serious risk of falling. What’s worse than dementia? Dementia AND a hip replacement.

I will PM before going further.

You are a special person to take care of him like that. I have helped care for family that suffered strokes, etc. My mother in law is currently in a small home with dementia. So sad to see them go away. Please take care of yourself and ask for help when overwhelmed. 🙏🏻

Bless you with this. I have never had to take care of a person with dementia related issues. I have watched my best friend help his wife care for her mother and still try to care for her since having to place her mother in a care facility. And all I can say is God has given those that provide care for their loved ones with Dementia a special place in Heaven when their time is due.

I have no advice and can only say God bless your soul.

I handled my parent's hospice care when I was 30 for my father and 24 for my mother, but both were for cancer, and both maintained their mental faculties until they passed away. I have no advice just empathy and respect for you.

It's difficult. My dad developed a very aggressive form of dementia. I worked full time and couldn't provide the necessary care. I hired in-home care givers. He received better care than he'd have gotten at a nursing home, but it was far more expensive.

My father developed dementia and he also had hearing loss that made things even harder.
He wanted to stay in his home but it got to the point where it was unsafe for him to live alone.
I would make plans as soon as possible so the transition can be easier for you and for him.

Yes my wife she had Multiple Sclerosis since our first was born..... It's a horrible disease

my grandmother has it. very tough to deal with some days and other days its fine

All u can do is put him in a care place. That is what we did with my grandfather

I have in the past and it’s very very challenging 😥.

Bless you

Me. My wife...😷