Finally Had Difficult Conversation ... Moving Forward

John1965

It's been a long time since I've posted, and given all of the problems I read about on this forum, we have it pretty good. That said, I want to share this story because it may help someone else. 

My DW is 56 and was diagnosed 6.5 years ago. The diagnosis was early but accurate (spinal tap and PET). The news was crushing. She was at the top of her field (analytical chemistry) and the diagnosis was a gut punch. Six years later, having had EOAD while going through menopause, she's now approximately late stage 5 (I don't give a lot of credence to the published stages, but have little else to reference). I've been her only caregiver. She "shut down" and didn't want friends/colleagues to "know' that she had AD. A family history of anxiety became very apparent. Much of my emotional energy has been spent protecting her ego/self-esteem/self-image. Today I finally had a difficult conversation with her about her decline and my need for a break and some personal space. ... It was tough. There were tears, and a short-lived misconception that death was imminent. But in the end, she realized (at least for now) that she can't be left alone and that some in-home care will be beneficial to both of us. The conversation wasn't easy. And I'm still having to be reassuring (over and over) about her concerns. So now I'm moving forward to find in-home caregivers to come 2 or 3 times each week. She won't like it. I'm not sure what I'm going to do with the time. But I know that I need space and that being her only companion 24/7/365 is not healthy or sustainable for either of us. 

Covid sucks. Get vaccinated and mask up. 

LadyTexan

Good for you John1965.

You are taking a very important step. You are investing in your mental health and recharging your batteries. 

When DH was discharged from the psych hospital, I brought in a caregiver for 4 hours, one day per week. The caregiver monitors DH, feeds him lunch and also does light housekeeping.

While the caregiver is with DH I use my "free time" to run errands, grocery shop, kick around in thrift stores and sit still by the Guadalupe River.

I am glad I brought in the caregiver. I am glad you are getting help too.

jfkoc

Having someone come in several times a week for short periods of time was a life saver for me and I did not always leave the house!

Jeff86

Standing ovation for you, John1965.  Yours is a heartbreaking story, and you have been a faithful and devoted caregiver from a regrettably young age.

Good for you for having the courage to make this difficult decision, and to explain it with such patience and love so that your DW can understand to the extent that she can…even if she does not remember, later.

You are doing the right thing.  For your mental and physical health.  It will make you a somewhat less stressed caregiver.  And that will be good for your DW, too.

60 falcon

Interesting John, because two days ago I had the same discussion with my wife. Good for you and I hope you find someone good to help out.  I'm just burnt out. My fuse is short and patience is pretty low all too often.  My wife is to the point that I can't leave her alone at all.  For example, I'm needing some dental work done and there's no way I can leave her in the waiting area and I highly doubt I could expect her to sit quietly off to the side in the exam room.  Just can't do it. For years my wife has been shadowing me to death, the only me time I get is when I lock the bathroom door or when she's sleeping.

So two days ago I made calls to the businesses that offer in-home care.  We live in a rural area and we're about an hour from the two nearest city's that offer these services. But, there's only 4 of them. They aren't servicing my area because they can't find enough employees to hire and because of COVID.  They only have staff to service their core area.  I'm feeling screwed.  There is a new assisted living/MC that is planning to have an adult daycare also.  (They hope to open in September but I'm having my doubts about that.). My wife is on their " daycare list". I sure hope that works out.

I know that conversation you had with your DW was hard.  I also know you're doing the right thing. I really hope you find help and get the breaks you need.  This 24/7/365 caregiving without assistance or breaks isn't healthy.

M1

John this does help, I've tried having that conversation with my partner (also formerly brilliant,still fiercely independent) and haven't gotten very far. She too has been very sensitive to others "knowing" her diagnosis, though it's now obvious, and your observation about the energy needed to protect ego and self-esteem is spot on. She too will hate having anyone come in, although she could make friends with a rattlesnake if she wanted to. I'll be interested to hear how it goes for you.

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CStrope

For those of you that have been able to have a discussion with your LO about having in-home help, do you think your LO has any concept of their dementia?

My husband has Alzheimer's, but anosognosia has him believing he's perfectly fine, so I'm not sure how I could approach the subject.

60 falcon

CStrope wrote:

For those of you that have been able to have a discussion with your LO about having in-home help, do you think your LO has any concept of their dementia?

My wife definitely knows she has Alzheimer's, she'll tell anyone we run into.  But she denies having dementia.

60 falcon

Victoria2020 wrote:

And I'd probably never bring up the decision or their agreement for getting help again.

It is just happening. They probably won't recall the conversation or their agreement.

  Processing the information as to why they/you both need help is probably beyond them but their imperfect brains will whip up emotions about the pending change.

Look forward to the upcoming respite in your head, but don't mention it. It is lonely to be their  sadly, former full partner, and now primarily their caretaker.

 

You're right.  When my wife has moments of relative clarity, I still attempt to reason with her. It's futile, I know.  She probably already forgot what I was saying.  After years of this I still miss being able to discuss things.

Suzzin

I have a strong family history of AD and have been worried about my own memory for a few years. I would like to say that I would approach it head on, tell my husband that I want him to get care for me instead of sacrificing himself, and feel no shame about telling friends that I've got AD and please be patient with me. But I know that's me, now, making those statements, and that the cruelty of AD is that it robs us of the ability to remember/rationalize those decisions. I would hope that my husband would listen to me NOW and do for me later. Get someone in, try to make it a nice person, but don't give up every moment of every day.