don't know what to say to DW

l7pla1w2

I visited DW yesterday at her MCF, and it was pretty disheartening.  I managed to record a bunch of our conversation and transcribe it.  The key points:

* She asks why she is there, what changed between us?
* Why didn't I talk to her about the change?
* Why don't I want to be with her?
* Is there someone else?
* What's the plan for her, for us?  What do I want?

This seems to sum it up:

"You seem to want to leave here and go someplace else which I didn't understand and so I'm confused about so many things.  I ... can't even tell you what I believe to be true and not true, and if you just decided that ... I don't understand why you want to do something, umm, and you don't want me to know about it,"

I didn't know what to say to DW, and I was unable to deflect her to something else. I obviously can't be direct and say, "You're brain is broken, you're in the brain hospital, I can't be here with you, and you'll never leave."

Timmyd

I have been following your journey for a while now and I appreciate you sharing it with us. Your DW is able to ask very coherent and relevant questions for someone who is so far along in this journey. My DW is probably at a similar stage in progression but could never ask such meaningful questions. It must be very hard when the truth is so obvious and clear, yet cannot be spoken. Up until this disease, I have always found solace in being able to speak the truth no matter how unpleasant or difficult. However in these circumstances, the truth can be counter productive.

I think you continue to do a tremendous job under the most difficult circumstances. Try to find space to give yourself credit for all the good you have done, rather than thinking about how you wish things would be different.

Carl46

I told my wife that I needed help taking care of her and she was in MC so the people there could help me. And I told her I loved her, but I needed help. When she said "I don't know where I am or where I'm going" I gave the same answer. The affirmation that I loved her seemed to help.

l7pla1w2

My DW would ask why she needs taking care of. She thinks she's perfectly capable of taking care of herself. She isn't remotely capable, of course.

l7pla1w2

Thanks for your kind words.

BPS

Does your wife have any concept of time. Maybe those were feeling at that moment and by tomorrow it may be different. My wife had a stroke and moved straight to MC a little over a year ago but she thinks it has been a couple of weeks. 3 weeks ago she fell and broke her arm which has physically stopped her. Due to the stroke she needs to use a walker and with the broken arm she can't do that so she goes from the bed to a wheelchair. I can still talk to her about when she gets better we can move into an assisted living and be together again and that helps her to feel better. I wish she hadn't had the stroke but in some ways it has made it easier. I wish I had an idea of what you could say.

sandwichone123

When my dh moved to memory care I really wanted to be honest with him, and the folks here dissuaded me, saying it would be really unkind to tell him he's never coming home. I stuck with vague answers like, "we'll have to see," or "yeah, we have to wait til they say it's ok." I never blamed the doctor, just the vague "they," which worked for him. After a few weeks he had come up with some answers that made no sense to me, but that reassured him.

SDianeL

create a fib and repeat it. She needs reassurance. Does she remember when you were there last when you visit again? Talk to the nurses and see how she is when you’re not there. Caregivers can trigger anxiety just by being there and they pick up on your feelings. She may be ok when you’re away. Try going at mealtime and not saying goodbye when you leave, just slip out and let the nurse know you’re leaving so the can distract her. Ice cream worked for my DH. They always had it handy. Remember, you are not doing this to her, you’re doing it for her so she gets the best care possible. 💜

l7pla1w2

https://alzconnected.org/discussion/comment/244342#Comment_244342

According to the nurses, DW often asks when I coming again. They reassure her that I will be there "soon". She also gathers her things together on her bed so she's ready to go home. The staff put her things away, and she takes them out again. I never say I'm leaving. I use some fiblet or other and just leave. It's tricky, because I have to be sure she won't follow me on the way out.

DW knows she's not home and she's not with me and she doesn't understand why. Obviously I can't tell her why. The obvious fibs won't work. If I say "They say you need to stay for awhile", she'll ask "Who says?" and "Why?".

midge333

My DW asked me a lot of the same questions for the first few months she was in memory care. Like @Carl46 , I told her that I could no longer care for her at home and that I needed help caring for her. I had to repeat it many times. At one point, I think she figured out that she was never leaving the facility and told me something to that effect. We are nearly at the 6 month mark and she rarely asks these questions any more.

l7pla1w2

I don't know whether DW would accept the notion that she needs care. She still thinks (or, at least, thought) she could take care of herself. If I tell her I can't take care of her, and she insists she can take care of herself, then what do I say?

sandwichone123

You can talk vaguely about something like adult protective services, saying you understand she's fine, but "they" have to finish…something, and you can't bring her until "they" say it's ok. My dh, when he was in this stage, would promise to be good if I brought him home, which I found so, so sad.

SDianeL

https://alzconnected.org/discussion/comment/244352#Comment_244352

could you say the house is being repaired? Blame the doctor? That worked for my DH. He would ask to go home and I would say when the doctor says so and he accepted that. Maybe tell her she needs physical therapy? Is she on medication for anxiety? I know this is so hard. So sad. Hope it gets better .

weareallunique

Oh the sadness of this disease, the caregiver tries to use logic, facts ,evidence —which the LO may well request but can not process and find comfort in hearing . So we struggle to learn how to give emotional comfort . It sucks.

Naomi Feil's videos may help with this - her approach takes a lot of probing but can reach the PWD emotionally.

Dio

Gosh, I'm in the same boat. Today DH asked if he's going to die there, said "I can't live here and spend the rest of my life here forever and die here. I'm still so young (64)." It made my heart ache. I told him I understand but we can only take it one day at a time.

l7pla1w2

That's a great answer, much better than what I would have come up with.