How to make time for calls etc. that involve talking about his dementia when he's always listening.

shiawase12

Hi there. My DH has dementia and I"m finding it difficult to make arrangments / schedule appointments and give those people background information on what is going on when my DH is always within earshot. He is usualy glued to my side.

I feel guilty making up an excuse to get out of the house to make calls or even to start going to regular support group for myself as a caregiver.

He's still in the early stages and pretty much capable of taking care of himself, but does not see things other than forgetting words and being a bit slower with some things. "That's just what happens when you get old. You slow down." He doesn't want to talk about the dementia - feels that I focus only on that and he wants to enjoy life.

How do others go about getting such things done - or even telling friends and family about it when he doesnt' want to tell anyone.

So tired . . .

M1

Welcome to the forum, though sorry you are facing this. Don't feel guilty, you have to start acting independently of him in order to take care of him. Make all the excuses you need, get someone to stay with him or take him out so that you can make calls in private.

educate yourself about anosognosia, it's a feature of dementia that prevents him from perceiving that he has deficits. This is different from denial, and he truly thinks he's fine. Stop discussing dementia with him. Shadowing is the term for his being glued to your side.

tasks for early days are to make sure your legal and financial affairs are in order (you will need durable power of attorney for his healthcare and finances, and you should name someone besides him for yourself). It's also time to accomplish any bucket list items that you can- in that sense, he is right. But your relationship with him has already changed, and that is very hard-he is no longer your equal partner.

Read a lot of threads and you will learn a lot. Under quick links and groups to the right, there's one for new members with a lot of useful information.

Iris L.

Ditto everything M1 said. Do not discuss dementia with him.

Also, I agree with your LO: don't focus only on dementia, this is the time to enjoy life. Not to put your head in the sand, but to get your collective affairs in order and to do your Bucket List now, if this is on your mind. Find fulfillment wherever you can.

Iris

trottingalong

In our house dementia or anything pertaining to it is not discussed. My DH will tell me he is foggy or really can’t understand or remember things and will ask me if I think he has dementia. I always say no, sometimes your brain doesn’t work as much as it used to, but that’s what happens when we get old. He’s relieved. Other times he tells me he’s thankful I still have a memory. I just say “two memories are always better than one” and he laughs.
I often use email to contact providers. If that’s not available I make calls from the grocery parking lot, or say I’m taking a small walk and make a call. I use any opportunity I can. It’s hard not to feel guilty in the beginning, but you quickly learn it’s better for you and your LO when you do.

CindyBum

Welcome and so very sorry.

I'm with the others. You have to find a way to let go of the guilt and remember that you are now part of a duo needing care. You need self care as much as he needs your support. He needs you rested and supported, even more so later.

Please try to find a way to incorporate self-care into your life and let go of the idea you need to be by his side constantly, especially in this early stage. Now is the time to build that self-care muscle, as later changes will likely make finding ways to get time alone harder.

It's ok to find those moments alone. It really is.

housefinch

I’m in a different situation (I have a child with autism and intellectual disability) who gets upset anytime I’m on the phone in her presence. She makes it impossible to make a call. I have to shut myself in the bathroom or our mud room and have her watching a video. That only sometimes works. She shadows me like people say their loved ones with dementia do. It’s incredibly stressful. Hugs to you. I have cried sitting on the bathroom floor before—-then mopped myself up and come out.

sfrsythe

Boy is this a big struggle of mine right now too! I have a mental illness I’m already on disability from and now I find myself just feeling in knots inside and brokenhearted it’s tough on me. My DH has been diagnosed with moderate dementia about two months ago now. Answers lots of weird comments and things that were happening. How am I supposed to take care of the two of us? I don’t have much if any support around. How am I supposed to do this too?

Jgirl57

You are correct ! It is very difficult in the early stages of getting ducks in a row when your loved is within earshot and still understands some things . I would often go to the ladies room when we were at a store /library to make phone calls . For detailed matters I would ask for an email contact . Slowly but surely you will figure out a way .

jsps139_

I have always taken care of phone calls while he is in the shower. I am fortunate that it takes him over an hour to get everything ready and take his shower, so that gives me plenty of time.

ButterflyWings

DH loves music so I often would put on his favorite either via YouTube or a radio/cd player on the side table. Or put a movie on that I know he likes. Then I'd step into the other room to take or make a call if needed.

Today, I am wondering if maybe you could get your LO to wear earbuds or headphones long enough to listen to something on a laptop, tablet, or phone? With a (long) playlist and/or movie to accomplish the same thing. Even if you are in the very next room but in eyesight in case he needs to be monitored as my DH has always had to be, he wouldn't be able to hear the details of your discussion.

I agree with the members above. Follow their advice and try to shake off the guilt. We do what we must do FOR them, not TO them. Dementia is to blame. Not you. And after taking care of the legal matters, please do travel, enjoy each other in any way you both had planned (or choose to now even on a whim) before time runs out. Sorry to put it that way, but… there is a way to get through this and survive your LO's disease. It requires a brain shift for you/us, not our PWD LOs. I am still working on it! But you can do it. And we all help each other.