Lost

Ihatedementia · July 23

I'm new to these discussions and I feel completely lost. My DH has become increasingly detached from reality. He doesn't know me at all. He thinks I am mean, even though I do everything for him. He daily wants to "go home" even though we are at home. Has anyone else had this experience?

Gator1976 · July 23

So sorry you’re here.
We are all on the same journey here. Hate say this to you but it’s time he goes into memory care. Both of you will be safer this way. They will know how to settle him down and make him happier. He needs professional help and you do to, to help you cope with your feelings and challenges.

Cat K · July 23

I read your post and it's something I could have written. Last year my husband called the police without my knowledge, saying there were strange people at our home partying. I was shocked when two deputies showed up at the door. He swore to them that he didn't know me, that I was not his wife. I showed the deputies my driver's license, husband demanded to see it and a copy of our marriage certificate, then husband said I could have made those myself. The deputies were very sympathetic when I told them he has dementia, even asked me if I felt safe, and to call if I needed them. My husband also says he needs to go home. Well, he used to say it a lot, but then went through a long time without mentioning it, and I thought he was over that. No, he started it up again yesterday, demanding to go home and getting angry and very agitated. I never know what to expect from him. I know exactly what you are going through, but I'm so sorry I don't have any answers. I'm stumbling along every day, wondering what will happen next. This forum is the right place to be for us, the people so supportive.

H1235 · July 24

This is a very good article that may be helpful.

understanding-the-dementia-experience.pdf

Cranddi · July 24

Please talk to his doctor about this. My wife had similar issues and it was resolved with medication.

Vitruvius · July 24

”Has anyone else had this experience?”

My guess is there are none here who haven’t experienced much of what you’re seeing. With my DW I certainly experienced her not knowing who I was, and her desire to go home. I was lucky that she (almost) never thought of me as mean at least.

Feeling lost is also part of caregiving to a spouse with dementia. There are many resources on this site that can help you feel a little less lost. Much of it revolves around the acceptance of the situation and not taking it personally, they have anosognosia and despite their detachment from reality, they think they are normal.

WIGO23 · July 24

First of all, I am sorry you have begun walking this journey with all of us here. I can only add that all the difficult behaviors (of my DH with ALZ ) as they come about require so much from me as a 24/7 caregiver. I find myself creating new distractions for my DH to try and move away from the troubling behaviors. I find myself gritting my teeth when I have answered the same question a dozen times in a few hours. I find myself trying not to argue with his unrealistic assessments or expectations. I find myself trying to break down simple tasks into small steps he can still do. I try. I try. I try. I fail. I try again.

annie51 · July 24

The mean things that DH says to me still hit me, but my skin is getting thicker little by little. It’s very hard when you know you’re doing so much for them. You just have to keep saying to yourself that it’s not personal - it usually is a result of something else in their mind that is causing the distress or aggression.

My DH also has gone through phases of wanting to go home - this caused me a lot of stress. I tried asking questions about his home, tried to distract him with something else (usually food!), drove him around going the direction he wanted to, then circling back eventually. Each day I dreaded the question but got through one day at a time, convincing him that it was ok that he stay here and he eventually stopped asking.

I’m starting to tour MC facilities…I think that will be in my near future. But I want to see if medications will help first. Definitely talk to his doctor about this before your mental health suffers.

SDianeL · July 24

Welcome. Sorry about your DH. He’s in his reality caused by dementia. The best advice I got here is to meet them in their reality. And “you can’t reason with someone whose reasoner is broken.” Read the book “The 36 Hour Day” which helped me after my DH diagnosis. Search online for dementia caregiving videos. Tam Cummings has some good ones. Learn all you can about the disease and come here often for info and support. We understand what you are going through. 💜

tboard · July 24

https://alzconnected.org/discussion/73579/lost

My spouse of 45 years sometimes calls me "evil bitch" and he does ask to be taken home. He sometimes tells me that he doesn't know who I am or who he is. Sometimes he asks to go home ,usually when it is late in the day and he is tired, thirsty or hungry.

I know that most of the experiences I have had with my DH are not terribly unique. No two people with dementia are quite the same but there are experiences that we all have as caregivers.

When DH wants go home, offer him a beverage. Sometimes just leaving him alone for awhile will help. I think people with Dementia sometimes have a kind of sensory overload. I have to remind myself all of the time that I can not fix everything.

Denise1847 · July 24

https://alzconnected.org/discussion/73579/lost

I am so sorry. These are very common behaviors. It is tough to go through this. I suggest you ask the physician to prescribe meds that will tamp down these behaviors. My DH is on Seroquel and it works well. Alot of times, "home" is not a physical place but a feel of being safe and secure or restoration of what their life used to be. Check out Teepa Snow on YouTube. She explains these behaviors and how to cope.

annie51 · July 24

Very interesting thought about the sensory overload. I’ll need to keep that in mind and see if that causes some of the anxiety and agitation.

tonyac2 · 3:19AM

My DH rarely calls me by name. It’s mom, mother and sometime grandmother. Grandpa once. He also wants to go home and I just say the name of the town we live in and that we’re in our ___________ home and that we’ll go to his home tomorrow. That seems to be good enough for him. I never say, “we are home”, as that’s too distressing for him.

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