Support for the spouses or partners of dementia caregivers!

Mrs Reyes

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Is there any information on support groups for the spouses or partners or the caregivers or info on what it can do to a relationship or marriage? Any information is greatly appreciated!

Marta

I think you’ll need to be more specific. Tell us who you are and what are your specific concerns.

Emily 123

Hello,

You can click on the 'ALZConnected Resources' link at the top of the page and select 'Dementia Resources' to see if anything there is helpful. Or you can go here: https://www.alz.org/help-support

If you click on the 'Discussions' link, also at the top of the page, it can take you to the spouse forums.

The Help Line is 800.272.3900

M1

Welcome to the forum. In my opinion, this forum is more support than any in person group I've attended. That said, your local Alzheimer's Association chapter and/or Council on aging will probably have a list of local support groups near you; any local memory care facilities or research centers at a regional medical Center might also have groups.

The spouse and partner page has lots of discussions about the impact on relationships. It's huge, to say the least.

harshedbuzz

@Mrs Reyes

Hi and welcome. I am sorry for your need to be here, but glad you found this place.

While this site isn't specifically for those impacted by a caregiving significant other, it is useful for anyone impacted by dementia. There are a number of husbands, wives and (mostly) girlfriends who come by looking for support as they support their partner. Sometimes, they just need to vent or have their feelings validated. Sometimes they here for a gut-check or confirmation that what their partner is doing is best practices. Sometimes they're posting on behalf of their partner seeking solutions. There are also a number of women here who are the primary caregiver for their MIL.

Many of us are married adults trying to balance parental care and while tending to their relationship with a partner and sometimes children.

HB

NUMber2

https://alzconnected.org/discussion/comment/189189#Comment_189189

I apologize but I can't find the page "support/ discussion" page you were referring to. My husband and I argue daily about my mom.

Surfgal

@Mrs Reyes sounds like we are in the same boat. My MIL has mixed VD/AD and is having increasing trouble with IADLs: doesn't cook any more, can't manage finances, keeps confusing her meds even though we pre-fill her pill container, etc. I am her medical companion, at her request; but my husband has medical POA.

She lives 3 doors away, and my husband (who doesn't work outside the home) spends 5-6 hours/day with her. I don't think she should be driving, but neither she nor my husband wants to hear it and think I am overreacting (not just about the driving -- about everything to do with her decline). She has no other social outlets and really, neither do we. We are supposed to be having one date a week, but we don't even manage that regularly.

Hubs came home yesterday in a great mood to tell me that he had "confirmed" that she never wants to move into any kind of facility, wants to keep living in her house until she dies. I am worried that he's making promises he won't be able to keep, but -- in light of many recent arguments he and I have had about her status and my resentment of the fact that our entire lives now revolve around her -- I am biting my tongue.

A complicating factor is that she was awful to me (and hadn't ever treated my husband all that well either) until she moved here to be closer to us a few years ago. She was easier to get along with for a while, I think b/c she felt she had to be. But as her dementia worsens, she is lashing out more and more often -- sometimes because she's confused and scared. I'm trying to retain compassion for both of them, but I am feeling like I need to step back before this completely takes over my life and I drown in resentment. Did I mention that I am also the breadwinner, handle all the finances, chores, cooking, etc.? At least we don't have kids.

I'm completely fried. I'm sick of taking care of everybody when nobody takes care of me. She has a bunch of chronic conditions, but they're all well managed. This could go on for years, and I don't know how long I can cope.

nursepam

My husband is in mid stage & my main concern is his constant wandering away from home. He is currently on an antipsychotic med which has helped some with other behaviors but the wandering continues! Anyone experiencing the same with any advise?

M1

Hi nursepam. You will probably get more responses if you start a new discussion. Takes a while to get used to the website.

You can also search for similar topics. Many people put slide locks up above eye level at the tops of doors, and alarm the doors. For some reason people with dementia do not tend to look upwards.

AC - Seattle

> @Surfgal said:
> @Mrs Reyes sounds like we are in the same boat. My MIL has mixed VD/AD and is having increasing trouble with IADLs: doesn't cook any more, can't manage finances, keeps confusing her meds even though we pre-fill her pill container, etc. I am her medical companion, at her request; but my husband has medical POA.
> She lives 3 doors away, and my husband (who doesn't work outside the home) spends 5-6 hours/day with her. I don't think she should be driving, but neither she nor my husband wants to hear it and think I am overreacting (not just about the driving -- about everything to do with her decline). She has no other social outlets and really, neither do we. We are supposed to be having one date a week, but we don't even manage that regularly.
> Hubs came home yesterday in a great mood to tell me that he had "confirmed" that she never wants to move into any kind of facility, wants to keep living in her house until she dies. I am worried that he's making promises he won't be able to keep, but -- in light of many recent arguments he and I have had about her status and my resentment of the fact that our entire lives now revolve around her -- I am biting my tongue.
> A complicating factor is that she was awful to me (and hadn't ever treated my husband all that well either) until she moved here to be closer to us a few years ago. She was easier to get along with for a while, I think b/c she felt she had to be. But as her dementia worsens, she is lashing out more and more often -- sometimes because she's confused and scared. I'm trying to retain compassion for both of them, but I am feeling like I need to step back before this completely takes over my life and I drown in resentment. Did I mention that I am also the breadwinner, handle all the finances, chores, cooking, etc.? At least we don't have kids.
> I'm completely fried. I'm sick of taking care of everybody when nobody takes care of me. She has a bunch of chronic conditions, but they're all well managed. This could go on for years, and I don't know how long I can cope.

I am completely new to this forum and I have been reading what people are posting. I'm so sorry this is all on your shoulders and your husband doesn't seem to be helping with the situation at all. How are you? I am dealing with something similar. I came to this resource to try and find something like a Zoom support group so I can actually talk to someone. I'm just not finding that.

M1

Welcome to the forum AC. Does your husband also hold financial poa? Ifvso and he allows her to drive with a dementia diagnosis, he could be sued for everything he owns. You as medical companion should ask her doctor about this.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/200812#Comment_200812

AC welcome to the forum! If you hit this link then go to Alz Assoc Programs and events, you may be able to put your zip code in and find a support group that fits your needs.

https://www.communityresourcefinder.org/

AZGuy

https://alzconnected.org/discussion/comment/197858#Comment_197858

Hi nursepam,

A couple of suggestions: my DW was going out the front door and wandering away from home. Thank goodness we have wonderful neighbors. They've helped look for her or brought her home. I installed a key only deadbolt lock on the front door. She's tried to get out the front door but the key only deadbolt lock stops her.

I recently got her a medical alert bracelet with a clasp that she can't undo by herself. It has her name, medical condition, my contact information and other medical information. It has info on both sides of the bracelet. If she does happen to wander away someone can call me.

Our back door goes into our yard that is fenced and locked. She can at least go outside without wandering away.

It wears you out trying to constantly keep an eye out for them. I humor myself, and her occasionally, when she's in another room. I'll go in to see if she's OK. I'll tell her it got too quiet. You know, just like you do with the kids.😄

I hope this helps a little.

AZGuy

https://alzconnected.org/discussion/comment/190281#Comment_190281

Hi Surfgal,

One other response about if your MIL is allowed to drive and causes an accident, or even gets into one, you could lose everything, sounds right. Your husband needs a wake-up call. Is there someone he will listen to? If your MIL gets into an accident, you, your husband, and your MIL could lose EVERYTHING! Maybe even your freedom for allowing her to drive. Or, her getting lost and winding up many miles from home.

A Dr. needs to intervene and tell your hubby that MIL has no business driving in her condition. He's asking for trouble.

If your husband can spend 5-6 hours a day with MIL, why are you spending so much of your time caring for her too. I understand there might be some things your husband's not comfortable with doing for mom; bathing, dressing, incontinence issues, etc. Hire an outside caregiver to come in once a week to take care of mom. He should be able to take care of meds, Dr. appointments and daily needs. What's he doing for the 5-6 hours a day he's there? I guess if you refused to go over there to take care of her because you're too busy, he'd be forced to hire someone or take care of her himself. Yeah, easy for me to say.🙂

Maybe your husband is in denial about mom's condition. That's why he needs someone he will listen to to tell him what's going on.

Good luck. Sounds like you're going to need some major help.

13Nuget

Back in 2018 my DH had a small stroke and the mri reflected Cerebral Amyloid Angiopathy and the big bleed causing the stroke. I had never heard of this nor was very familiar with Dementia. I asked about his prognosis and the Doctor said maybe 5 years. So in 2019 he needed to get a new car used car so with the 5 years in mind I OK'd him getting this used car of his dreams. About 6 months later his doctor advised that he should not be driving. He didn't remember her saying this nor would he believe me as he was a good driver. Just got lost a lot. He said there was no way I could tell him was to stop driving. I had his doctor write him a letter which took the blame off of me. I didn't sell his car for about another 3 months or so. He still reminds me of the fact that he can't drive but at least he's not driving.

Gammaofmany

https://alzconnected.org/discussion/comment/200812#Comment_200812

hello, this is my first attempt to find some type of support as a caregiver for my Mother. I empathize with you as I have moved in with her 3 months ago and now she is getting more and more agitated and aggressive. Her memory care dr gave her zero quell (sp) but that is a horrible drug. I pray you find your answers you are looking for and I am hoping to learn to navigate this site a bit more for many of us. Blessing to you