What about Me?

@kartwk , Happy Belated Birthday! I used to get cards for my dad to give my mom for her birthday and their anniversary. I’d explain why, he’d sign them and give them to her.

If you use the doctor office portal you can send info you didn’t get to mention to your doctor that way. It works well for me.

Thanks to the support and responses on this board, I am trying to proactively do something with H.

Well, I am constructively working on trying to eliminate some of the constant groaning. I made an apt. for him at the ortho surgeon (mind goes black, but the guy that does TKR, hip replacement, etc. - all the things H won't go near because the reality is he is scared).
I told H that perhaps the Doc could give him shot in knees and maybe, maybe braces (another dirty word H doesn't want to hear).

Well, we went this morning and the outcome is good, considering. No, H isn't going to have any kind of surgery (he has himself convinced that if he does he will die) but the Doc gave him shots in both knees to relieve the pain and also braces, good solid braces, for him to wear especially when walking down driveway etc.

I suggested H keep the braces on today to get use to them. His typical pattern is not to do something like this and then not bother to use them. (too klunky, the spring bothers him, etc. I have heard it all before).
I coaxed him into walking around the house with them by saying that they will probably help with the knees, until the shot kicks in and he can get use to the hinge thing. These are sturdy!
Somebody UP THERE likes me, because H actually agreed. I have been praying that something would help him so that the constant moaning and groaning every time he moved would stop. The hip and the back aren't being helped, but maybe getting some stability etc. with the knees will help.
those.

Still working on the dementia diagnosis. I am hoping the next time He sees the Doc. I am going to remind the Doc. how he acted at my apt., interrupting, childlike response when called on it.

So now he is back to watching tv - He is all up to date on Heartland, but has discovered that the Hallmark channel is doing Christmas movies, all day long.
So, he may, just may be moaning less, but jingle bells, et. al are going to drive me crazy before Thanksgiving is even here!

@kartwk , glad things improved a little at least. Has your husband been diagnosed with neuropathy? I ask because my mom has that and she constantly complains of pain, though she doesn’t have MCI. Does your H complain of the pain only around you or other people?

@celia16
Morning Celia - H tends to only be vocal about his aches and pains when it is just me around (lucky me - not). I know he is still in pain at other times, but he hides it.
This latest trip to the ortho surgeon was one I set up. He was going to go, or I was going to see about placing him some where because with my own mobility problems, I just can't handle it. And the constant moaning and groaning constitutes cruel and unusual punishment IMHO if you know what I mean.

He hurts and I understand that, but so do I. When he drops things all over the house and doesn't bother to grab a grabber or pick them up it makes it harder and harder for me.
Forgive me, but our last big discussion about house cleaning has to do about cleaning the laminated flooring we put in about a year ago. He absolutely believes that you cannot even use a damp sponge, etc. on it, much less a steamer etc. Pine-sol drives him nuts. He use to claim it was because it bothered his lungs (everything seems to these days) but let it slip it was because he doesn't like it. Same with any cleaner including vinegar and water. Totally wacky about that.

It use to be just chicken bones he insisted had to be wrapped and put in the refrig because putting them in the garbage (inside and or out) they would stink. He has now "graduated" to doing the same with spaghetti, spaghetti sauce, etc. for the same reason. This is NOT normal! The PCP doesn't seem to be listening when I tell him that about H

@kartwk
I'm sorry you're feeling so alone. I know how that feels, and it can feel that way even if you have people to open up to because they often can't see what you're talking about. But, you're the one that has lived with him all of this time, you're the one that knows all of his habits and his day to day personality. You just have to go with your gut and dive in with the neurology appointment without anyone's blessing except yours. If you're wrong, then yay, but you have to find out what IS going on.
I tried to read back and see if you have taken him to a neurologist yet?
I took my husband to his PCP and he shrugged my concerns off. I'm done with him. I got H to go to a neurologist and did they did do cognitive testing. He showed as having early, unspecified dementia. That was about 10 months ago. We only saw the NP the first 2 visits, then I requested to see the actual neurologist the 3rd visit, also, useless. I had to push for bloodwork and scans. They showed some of the tau and amyloid proteins were off, but still not much interest in him or his plight.
I finally got him into the UCLA AD department and I am so happy that I did. When you have a neurologist that is part of an actual Dementia/Alzheimer's team it makes a world of difference. You feel like you have a team of humans that actually care about the patient AND the caregiver(s) all the time, not just when you're face to face, (although the others were not necessarily invested face to face, either).
My H isn't too bad yet. He does have some quirks and many lack of understandings, and when I have to trick him into or out of something important, he will say I'm sneaking behind his back. I am, but it's sometimes the only way. Then you have to listen to the berating and just accept it. So fun.
I hope you can get some answers and some peace of mind soon. And I hope you can get help for his pain/moaning, I get the annoyance of that. My H coughs alll the time and gargles when he talks, with no diagnosis...
Hugs to you.

@kartwk , I see. Yes, I can relate. My mom does the same thing. She varies though and fluctuates between being in pain, feeling nauseous and being dizzy. Also feels flushed, ears hurt, hang nail, stubbed toe, etc. There are periods of which she will take a break and not complain much. It seems to be related to anxiety. If she will take an anxiety med, she settles down and feels much better. She realizes this, but resist medication due to medication anxiety. She has an aversion to meds and begrudgingly takes a blood pressure pill and a couple of vitamin supplements. She is deficient of B12 and D and suffers damage from it, because she has refused them for years. She seems very sharp though with no dementia. Actually, remembers quite well. Recently, she started the complaining to others, not just me.

You are right about the mental strain of constantly hearing the moaning and complaints. I can’t imagine doing it to someone long term. But, she seems to be entitled. I’m not sure what I’m going to do about it. I have told her she’ll have to take some med like Lyrica. I know she’ll refuse anxiety meds. It’s as if she thrives on anxiety, drama, despair, etc. I suspect a long term care facility will be the best option. Hopefully, being around others there she’ll be more occupied and have less time to focus on the pain.

Also, I suspect the constant moaning, complaining, grimacing, etc. has a component of OCD.

@lkbous

I am there with you about his PCP. Going nowhere with him.
When he goes he puts on this big show about how he understands, etc. When we get out H is asking me what the Doc meant about things.

What I would enjoy is having a conversation with him, like we use to, that didn't involve me having to repeat myself 2-3 times as he looks blankly at me, and then take it apart and try to simplify it so he can understand. Sometimes he does, sometimes he doesn't.

Sadly, it has stopped me from talking to him. I feel bad about that, but it can be oh so frustrating when trying to communicate and he goes off thinking I am talking about something totally not related to what I said.

Anyone else deal with this and feel the same way? It is isolating for both of us.

@kartwk omg! Yes!
Both the cognitive show at the Dr. and the conversation experience as well. Your situation definitely sounds worse than mine, but I see everything you say…. I don’t have to be with him 24/7, but he does occasional unsafe things. But the conversation!!! Sometimes when we’re circling a conversation (but I thought, but I thought, but you said…) and he says ‘we’re having two different conversations’, no sh.., Sherlock!! OR he doesn’t even acknowledge that I’ve said something or asked a simple question with him looking right at me!! So I say ‘did you hear what I said?’ And he says ‘yes’. And I say well then respond! I’m taking full advantage of being independent as long as I possibly can. I take forever getting ready in the morning to avoid him. I stay up later than him, so therefore get up later than him. He is just no fun, and horrible company. Definitely not my former companion or the darling man I fell in love with at 15 and married at 19 (52 years ago). This is horrible. It’s beyond horrible. But you know that. I’m sorry. I’m sorry to say cruel things and I’m sorry for all of our losses.