How to answer DH's questions?

Dio

Here I am, on a beautiful Saturday, all alone, wallowing in self-pity. The need to visit DH is upon me now—ready or not—as he has a telehealth appointment with his neurologist coming up soon and I need to be present for that. Guilt has weighed heavily on me ever since I decided not to visit him after the first visit last year. I wish I could be stronger, but I am overflowing with fear and dread. I am also wracked with guilt for not willing to bring him home in spite of the 180 degree turnaround after taking the right combo of meds. Some days I even wonder if all that horror the past 3 years had really happened. Last week, DH finally asked his friends, "Why doesn't she (aka, me) visit?" (whereas he used to just say he wished I'd visit but never asked why I didn't.) This seems to indicate his reasoning and lucidity are even stronger than prior months. Paradoxically, this heightens my guilt even more. To prepare for the visit, I came up with some anticipatory questions but am having difficulty coming up with good answers because with his lucid mind, I don't think fibbing will work here. Should I just state the truth? I just don't know. I'm floundering.

How best to respond…

• Why haven't you visited?
• When am I going home? I want to go home.
• The doctor says I don't belong here and should move to assisted living…
• ??

BPS

I don't know your situation but, I think the feeling of guilt is probably just part of dealing with this disease. I have second guessed myself over and over. I have felt guilty for not doing the right thing or for doing the right thing for the wrong reason or, or ,or, so many things. I believe we all do what we think is best at the time and shouldn't feel guilty for that because that is all we can do. I say that and believe it but still think "what about". I am sorry, but I don't have any answers.

M1

Dio, is it possible to go for a visit or two before the doctor’s appointment? It would seem to me that this first return visit is very fraught with meaning and emotion because of the long interval. Despite what anyone else tells you, some of these things you can’t assess until you lay eyes on him yourself. This is kind of like getting back on the horse when you’ve been thrown. I suspect that after going once, you’ll have more of a sense of how to proceed. And you don’t have to answer every question right off the bat….for some the only answer may be to wait and see. Can someone go with you for this first contact?

Dio

Thanks, M1. That's the plan, to visit a few times before the actual dr's appt. I also had planned on going with the friend who helped drop him off at MCF but already cancelled twice due to his recurring health issues. We've rescheduled, but now his precious dog became very very ill. Neither his regular vet nor a specialist (internist?) for dogs know what's wrong. He's seeking another source in Davis. Hope they can help his dog. Your advice is spot on, as always.

M1

I hope that this ends up being a good thing for you. Always best to keep expectations low I know… but I hope anyway.

Sweetwater

mrahope

Gosh, @Dio , I absolutely feel for you. I, too, have not visited DH for some months. In my case, it is because since the last visit (in June) we learned of abusive and possibly illegal behavior that DH had been doing for years. Learning this (from the computer he left behind), was heartbreaking. It made me look back and see a lot of his behavior (pre-dementia) in a different way, which was not good. All this being said, if he were to regain his lucidity, I would feel that I needed to be there, as you do, especially with the neurologist appointment coming up. I think M1 is completely spot on. It will be tough, but try going a few times with another person as a "buffer". Know that I am thinking of you and wishing you peace despite this terribly trying situation.

Arrowhead

DO NOT FEEL GUILTY! I cannot stress that enough. We all have a hard time handling this and we all have different ways of doing so. What works for someone else might not work for you. Do what you can, but don't try to do more than you are able to.

jfkoc

It would be a miracle if we knew the best way to handle everything.

Unfortunately all we can do is what we think is best at the time.

Do you really need to be present for this visit? Does there really need to be a visit?

What ever, do not feel quilty!!!!

Dio

https://alzconnected.org/discussion/comment/224799#Comment_224799

I wish I didn't have to be there. I wish I didn't have to be the non-widow widow. But I need to see/hear what the neurologist has to say or how he plans to examine DH. My head can't stay buried in the sand hoping all this madness would go away…

SDianeL

he may not remember if you have visited or not or how long he’s been there. I would keep the answers simple. I’ve been busy, then change the subject. If he asks to go home, tell him when the doctor says so. Did the doctor say that?? If so, get a different doctor. If your husband is in memory care why is he seeing a Neurologist? My husband never saw one after he was admitted. Just his primary who made visits to the facility. I don’t see any need for a telehealth appt. Unless I’m missing something.

mrahope

Just my .02 My DH (in MC since mid-April) had to see a geriatric doctor via telehealth, and even though I hadn't visited for a long time (due to DH's prior behavior) there was no problem with the appointment. And also, the doctor acknowledged that he didn't need to see DH unless other problems developed, so that was a good thing. I was amazed at how little DH seemed to be affected by seeing me. I think it was harder on me than it was on him. He seems to have stabilized a good bit since entering MC.

Palmetto Peg

That is really sad for you - but I guess it is better than having our loved ones make a scene when we come. My DH has only been in MC for two weeks, with two weeks in the hospital before that for medication management. He is up and down - sometimes he is okay and sometimes he cries and asks when he can come home. There is just nothing good about this disease. I feel like my heart has turned to stone and I am just numb. There are so many things that I miss about having a partner in my life. Hugs to you as you get through this like the rest of us - one day at a time!

Dio

https://alzconnected.org/discussion/comment/225012#Comment_225012

Thanks for the great suggestions! The neurologist requested the appointment. Basically, he wants to see DH before the end of the year. The one and only face to face visit with him was 2 years ago when he took on DH's dementia care. All communciations of fluctuations in the disease since then and medication adjustments have been through the myhealth portal or emails. After DH moved into memory care, the communication has been 3 ways via email between neurologist, mcf and me. The idiot doctor who told DH he "didn't belong in memory care" was a visiting doctor I had hired for PCP care thinking it was more convenient and comfortable for DH without having to go out for lab work, etc. What a mistake?! Well, he's fired as of 9/27. Returning DH to our old PCP's care.

Dio

https://alzconnected.org/discussion/comment/225045#Comment_225045

Thanks, Peg. I wish my heart could turn into stone. Then I would feel less pain. I had visited him 3 months after placement. He started crying and asked if I was there to take him home. My heart literally broke into pieces. While staff distracted him, I dashed for the door, tears rolling down like a river as I heard him say, "Where did she go? She was just here…" I was an emotional mess afterwards. It took months before I could pull my wits back together. This was when I decided visiting him was not beneficial to either of us. Hugs to all of us on this wretched journey.