I want quiet, he wants to talk

shiawase12

My DH, probably into early stage 5 of Alz. He is still able to care for himself and do small chores around the house.

He is aware he has Alz, but rarely talks about it. Often tells me he just wants to be "normal". Although he did acknowledge this week that he couldn't handle the AM Express payment online any more and that it would be best for me to take it over. So that's something.

Whenever he does have a harder time getting a sentence out or thinking of a word it always goes back to " Well, I don't talk enough. " and the blame always comes back to how I don't talk to him. How he just wants to have conversations with me.

For me just the thought of having a conversation with him exhausts me and makes me anxious. I'd rather do puzzles for hours without talking or binge on Netflix shows ... escapes. But then there is always the guilt.

I either have to patiently wait for him to come up with the word or sentence. Never knowing exactly when he will be accepting of my help in suggesting the word, or when he will snap at me and give me the lecture that I need to understand his mind works slower and I'm going too fast or that I'm not helping if I don't let him figure out the word.

So fed up with it always being my fault. My logical mind knows it's not him, but the disease. But that doesn't make it any easier.

I know I'm preaching to the choir here, that you are all dealing with similar issues or much worse.

He asks for me to help at times, especially with electronics, but then tells me I'm being bossy or patronizing etc.

Most of the time after things have gotten heated he comes back and apologizes and tells me how horrible he feels. I try to reassure him that it's a disease and it is what it is. That we have to just make the best of it. Yet here I am just escaping.

So wish I could find a counselor to talk to.

I'm trying to work up the courage to go to a group session locally for dementia caregivers. My excuse at the moment is how to tell my DH that I'm going to go to it every week without him.

Hate this disease!

EH404

go to the meeting. It will help you & him as you’ll feel better & may even find other support you weren’t aware of. This is the time of life to call on friends - does he have any who would come hang out & talk to him for an hour or two? Reach out and ask. People want to help but don’t know how unless you tell them. It’s ok to Be blunt & specific - I worked at The Emily Post Institute for 18 years so I’m allowed to say this is OK to do, lol. Say “- I need help. Can you come here sometime soon and just let Ron talk to you for a few hours? I need a break.” If he has no friends ask a grandchild. And I’d also add to check out the online community that’s part of the company called A Mind For All Seasons, you can google it. Run by the founder & CEO Eric Collett - he ran a memory care facility for 10 years & has trained memory care staff in 39 states. They have an online community that is $25/month where you can attend live office hours & master classes. Connect with & talk to other people dealing with similar issues. Good for you for venting here. Do what you need to so you can take care of yourself- and never feel guilty or apologize for that….❤️❤️❤️

harshedbuzz

@shiawase12

With dementia, your DH isn't ever going to implicate himself or the dementia is anything that frustrates him. Given the lack of empathy and reasoning skills, with you being the only other person in the house, it will always be "you did this" and "this is your fault".

Perhaps a day program a couple days a week would make sense. You'd get a break and he could have social engagement with others.

For the weekly meeting? Assuming he is still safe alone, tell him you have to run to the store or your doctor as scheduled you PT for your sore [fill-in-the-blank].

HB

shiawase12

@EH404 thank you. That's all great information. I'm going to look into the other online support classes. He doesn't have any friends that could do in like that and grandkids are out of state and too little. I get the idea though and will see what I can figure out. I'm lucky that I can still get out for a bit on my own as long as it's not too far away. I will work in a phone call or two while out. :)

@harshedbuzz yes, very true. My logical mind knows all this. Hard for my heart and sometimes tired actions to follow that knowledge in the moment. I'm afraid he is too aware to be ok with me dropping him off at a day program. I'm still trying to figure out how to get him to go to a coffee hour the library has for caregivers and their dementia loved ones.

Today is another day. :) I'll get him out of the house to go do something.

terei

Try not to make things too complicated. If you want to attend the library meeting, tell him ‘we are going to a library gathering in an hour. Let’s get ready.’ Get in car and go. If you want to attend ANYTHING on your own & he can be alone for an hour or two, he absolutely does not need to know where you are going. Dentist, shopping, a friend’s, tell him whatever you want to and go. Do not tell him of upcoming events until it is close to the time you are going. It just invites questions and/or anxiety. As another poster said, he can not and will not be able to recognise his own increasing mental & physical weaknesses …he will project any issues on to you,so be prepared to ‘apologize’ for your ‘failings’ when he blames you. “So sorry. I will try to do better” will many times satisfy a PWD’s grievances against you and avoid escalation to arguing

CindyBum

Oh dear. I'm so sorry you're dealing with this one. It's incredibly difficult when they can no longer speak well, but still so desperately want to. The amount of sheer nonsense "conversations" I had with my DW over the last few years is amazing to consider.

I'm going to tell you something SDaniel told me early on and I didn't love it at first, but she was right. You might still be holding on to some denial that this is really happening. Letting go of my denial was so hard for me. I did not want it to be true and kept holding on, but once I finally let go, it became easier to apologize, to enter my DWs weird and confusing world, to take blame for everything, though she nearly broke me with that with her complaining about me through Stage 5.

But, I promise you can get practiced at taking the blame for just about everything, but it won't always be easy. I went through a pretty long period where my DW was demanding we "talk" and then I'd spend time pulling out all the words of complaints she had……about me. Fun! It was both kind of hilarious, but also super hurtful to me. I really struggled with it. Eventually, I got really good at guessing appropriate answers based on the tone of her voice and facial expressions. The vast majority of time, I had no idea what she was asking or wanted, but my responses satisfied her enough and she felt like she was still expressing herself. That's what she really wanted…to feel like she was part of it all. Sometimes it was, "Yes. That makes sense. Sounds good.", sometimes it was, "Hmmm…I'm not sure. Let me find out." or "Not that I know of." Generic stuff like that.

And I'm with the others. He doesn't need to know where you're going. He can find out about leaving just moments before you go and you can take the blame if he complains he didn't know…"I'm sorry. I must have forgotten to tell you." You have really reached the stage of more intensive therapeutic fibbing.

All of these conversations and the blaming conversations were exhausting for me. I don't think there's any getting around the exhaustion that comes with so many parts of this terrible journey.

Hang in there and big, big hug.

brupt30

My DH is okay to be left alone for a few hours at a time. I started seeing a therapist (in person; there is no privacy at my house!) a few times per month last year and also participated in a women's discussion group that was very helpful. Initially I just told my DH that I had errands to run, but eventually I told him the truth. I was surprised to find that he was very supportive and asked lots of questions about what we talked about, although I didn't share many details. Just a caveat though - my DH is very lucid and empathetic early in the day, but not so much at night. I doubt if he remembers our conversations, so I don't bring it up at all unless he asks.

MaryMN

I agree with the other commentators - you should definitely go to the meeting! As the old saying goes, "Misery loves company." It will help you to talk to others who are in the same boat as you. I have also learned so much from those members of my support group whose loved ones are further along in this journey.

Since your DH is aware that he has ALZ, I would suggest having a conversation with him (during a quiet time) about when he wants help. My DH also struggles to find the correct words during conversation and I asked him if he wanted me to jump in and provide the missing word or if he wanted me to wait. He was emphatic that I should jump in and provide the word immediately. Especially if you're around others, doing so helps keep the conversation flowing and actually makes any language deficits less noticeable, which DH greatly appreciated.

BPS

When my wife can't find a word and I have no idea what she is trying to say I just tell her that I know what she means but I can't think of the word either. Sometimes I add with a smile we are both getting older and are forgetting words sometimes. She usually smiles back and agrees.