Spouses Caring for Spouses Support Thread

Parent Cafe
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@Youdon_tsay suggested we start a thread on the topic, and it’s a good idea!

My husband’s memory continues to get worse. If I ask him to do something and he doesn’t do it IMMEDIATELY, he forgets.

After he went up to our cabin Thursday, I was up very late (somebody has to earn money and it’s sure not him lately) and heard water drip drip dripping in the basement. ChatGPT helped me turn the water off (ha). Friday morning, DH asked me to send him the phone numbers of some plumbers, which I did promptly. He said he would let me know if anyone could help. I texted him a couple of times during the day, but never heard back. That evening, I asked him if he’d had any luck reaching plumbers, and he said, “Plumbers?.. OH, I did talk to one and told him it was too expensive for us.” “No, hon, that was the PAINTER you talked to yesterday.” Sigh. At least I figured out the leak was from the kitchen sink, so I left that valve closed and turned on the water for the rest of the house.

For me, it’s a little PTSD, having gone through my son’s severe mental illness. I battled for YEARS to get him in a good place, and the thought of going through something similar is really tough to consider. But I know a lot of people go through stuff like this.

I think it was shortly after we got married, when I was 23 and he was 32, that it dawned on me that one day we would be older and statistically, he might need care for awhile. But I would do it all again. He’s a wonderful guy.

The hardest part for me right now is that I just can’t keep from getting frustrated and snappy with him. I 100% understand it’s not his fault, but I can’t seem to be patient with him. Any tips??

I did decide that while we SHOULD sell our house right now, I CAN’T. The Realtor put in a good bit of time and trouble for us this past couple of weeks, but she was very understanding. I’m not sure what to do at this point. I need to concentrate on working a lot of hours for now.

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I’m very sorry @MaineLonghorn! Caring for an absent-minded very forgetful spouse is challenging.

My H is 15 years older and until he turned 81, 3 years ago was doing pretty well. Since then we have been going to a boatload of mds & specialists, ERs and he has a growing number of health conditions and Rx and retiring providers. It’s a lot to keep track of.

He has been treated for prostate cancer, years of treatment for chronic constipation (without much success—including multiple ER visits), over a year of issues adjusting to life after cataract surgery which has created new vision issues, as well as trigger finger in all fingers of both hands and assorted aches and pains of aging and very poor short term memory. He also had a thyroglossal cyst removed which bled an unexpectedly large amount after we had a meal at home and required a return to the ER and overnight stay for observation.

If I had to work full time on top of trying to keep track of his issues AND my chronic long term issues, it would be WAY too much. As it is, it’s challenging but I can let my nonprofits have less attention when life gets too hectic without much harm occurring.

Along the way in 2025, we had a hearing for reconsideration and finally granting D social security disability because she’s never been able to work as she’s not reliably vertical (as opposed to lying in bed) due to Chronic Fatigue Syndrome/chronic mono.

Life is full and I’m glad to be able to attend all H’s med appts and advocate for him but it is tiring. I knew I’d likely end up being caregiver and mostly things are going fairly ok.

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My coworker is in a similar boat to you. She’s in her early 60s, her H is 75. 2.5 years ago he was still working in a moderately physical and public facing job. Fast forward to today, he can’t really do anything by himself. Wears diapers 24-7, can’t dress himself, can’t bathe himself. He can feed himself if someone makes it and still remembers people he knew before he started losing his memory. His newest grandkids though are tough. He also lost a bunch of weight that he didn’t need to lose. His BMI is now around 18. He does have a diagnosis of Alzheimer’s. But it’s been shocking how fast he’s progressed and he’s been on meds that were supposed to slow it down

My coworker needs to work full time for sanity reasons but also $$. Their household income is about $60K. She drives him 3xweek 40 min away in the morning and afternoon to an adult day care. We don’t have one in our city. The other two days she pays a caregiver - cash. It’s cheaper.

She also is the only child of her 90 year old parents who live in town and she also is the emergency babysitter for her 3 grandkids.

She had a lot on her plate! And she is not a natural caregiver and patient person. I’m not knocking her. I’m not either. Anyhow, she swears by Lexapro. She says she still struggles, but she can let a lot more go than she could before.

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Wow, that’s rough. Yeah, I might need to get on something, although I already take Welbutrin. It won’t be Lexapro, though. I tried that after we lost my nephew. I developed tinnitus and when I looked it up, sure enough it can be a side effect of Lexapro. And the ringing doesn’t go away when you stop using it. :frowning:

I know I’ve shared about my very close friend J who started developing symptoms about 11 years ago and she was diagnosed with early onset Alzeheimer’s at the age of 54. Her husband had to retire early a couple of years ago to take care of her. He was relying on church volunteers way too much and he left her alone occasionally. I had to be the bad guy and tell him she could NOT be by herself. So he quit his job and to his credit, has been amazing with her. He’s usually a terse, practical, no-nonsense guy, but he has been so gentle with her. I just heard from him - J is in a wheelchair and sleeps 18-20 hours a day. The last time I saw her, she thought she was saying words but it was just gibberish. Heartbreaking, because she said it with the same smile I’ve loved so much for many years.

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I’ll be watching this thread.

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My brother quit his job last month to start caring for my SIL who has ALS. Brother is 64 and SIL will be 64 later this month. I saw them last month and SIL is using a cane for walking. Her speech is now becoming impaired. The two of them have been together since they were 19 so 45 years. This has been very difficult for my brother as he is the guy that can fix anything and he can’t fix this. I know it’s only going to get worse and I’m trying to figure out ways to help support my brother. They live 1.5 hours away and I do see them often as they live in the ADU behind our mom’s house.

I will also be watching this thread for suggestions that others have.

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The day care and caregiver are relatively new. He used be ok by himself since he mostly just sat in a recliner all day and call her a million times when would she be home, etc. and then he would go in and out of the house and do thing like try to get in the car (he had no keys) and then go back inside. She has cameras set up in a few rooms around the house, so she can see him.

But he was going downhill so fast she thought maybe some interaction with other people would help. At least they make him move a little. So she spends 2:40 in the car each time she has to take him and then work 8 hours. It might have helped a little in the beginning, but I don’t know about now. He lost the ability to use the phone a while ago.

The caregiver at home came from after he locked himself out of the house and wandered away. Fortunately she knew right away - and sent her 90 year old parents after him. And then also our coworkers are always in the field driving around and one was close and could go find him and lead him back while she drove home.

It’s really hard. Plus he has to go get eye injection every month. That’s 60 min away in a different direction, though he’s getting close to the point he can’t follow directions enough to do them. And then he also has skin cancers woes. And top of all her parents’ issues and appointments. Her dad has to have some surgery on Friday for his bladder. He’s had a catheter for the last 3 months. And broke his collarbone earlier this year. And financially she can’t quit her job. Not really a choice. I’m sure they have little to no savings.

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For us, the saving grace was my H didn’t need much care until after both my parents died in their 90s over past few years and my older brother at 70. This way at least it’s just his medical issues and mine have fortunately been well controlled.

The other things we are very grateful for—great insurance and H happily retired over a decade ago.

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@showmom858 , I’m so sorry to hear that. I lost a brother to ALS several years ago and it’s a terrible disease. I am glad that you are able to see your SIL and brother often, as your SIL progresses, your brother will need a respite, even if for short amounts of time.

Everyone is different, but my brother enjoyed company especially as it became harder for him to be out. And he enjoyed certain things in the ways that he was able to. A glass of red wine ( medically approved- his doctor said only good wine ), he drank it through a glass straw. He and I shared the same sense of humor, so I tried to remember offbeat things I found funny b/c I knew he would appreciate those stories. I found a funny book I knew he would like and read it with him( he could no longer turn pages) and we both laughed so hard…so find what makes your SIL happy- music, fresh flowers, whatever you can share with her.

Hugs to all of you.

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Thank you, ML, for running with the ball I was still juggling.

I thought the thread would be useful as I was seeing more posts on here about spouses. My recent rant on the Say It Here thread was in part because I know some of what dh is doing is because he’s getting older and losing confidence in his ability to do tasks like he used to. He certainly doesn’t have any diagnosis, but he’s a pessimist/worrier by nature and even has said that he will not be a good old person. And he’s admitted that sometimes he thinks some of his ailments are all in his head. So do I take what he says to heart or write if off as hypochondria?

I’ve tried to be really patient and explain things constantly. Like @MaineLonghorn I find it so frustrating to repeat myself over and over. I don’t know whether it’s age or what. And I’m trying to do things to make things easier/less dangerous. I am really pushing a purge of stuff so that we can get Christmas items out of the attic and in closets so he doesn’t have to climb those rickety steps on the pull-down ladder any more.

Anyway, I definitely have it much better than some here, but the mental illness in his family makes me concerned something might pop up as well as health issues in his much-older siblings. His sister, who was 15 years older than him, died at 62. His brother, 14 years older, already has had a liver transplant and has had so many issues. His sister, four years older, has had a heart attack and other issues. So far, he’s the healthiest of them all. Maybe their experiences is what makes him worried?

(((Hugs))) to everyone.

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You are more in the space I am at. Of course, I’m currently sitting with H at the cancer center for his appointment, but his at this stage is just a monitoring/wait and see type disease.

But his mom died after a very lengthy and cruel bout of Alzheimer’s, as did his uncle and most of his grandparents. He is terrified that he’s going to come down with it - and so am I to be honest. My coworker is living my worst nightmare.

H’s memory has never been good, but nowadays when He forgets something, he gets so angry. But I tell him I’m hoping he will be like his Dad. H has certainly inherited his Dad’s arthritis and likely also his CLL - studies are mixed if it’s inherited, though it does seem strange they both have it. His dad also has always had a terrible memory. But he’s 91 now still with his terrible memory, but definitely not dementia/Alzheimer’s.

But my H had never wanted to be an old person. When we met at 19/23, he said he hoped he wouldn’t live past 50. I’m glad he’s done better than that! But he is not taking aging well mentally at all.

Edit h also inherited his Dad’s awful skin/cancer. He’s like a mini him. So I’m really hoping it carries over to his brain

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@FallGirl Thank you for the suggestions. My SIL loves to read. We have shared our love of books for years. When she is not able to do this I will talk to my brother and let him know I would like to do an Audible subscription for her. She enjoys watching birds outside so I will also think of things that help her with this. I have been taking flowers to both her and my mom whenever I visit.

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DH had his cancerous prostate out in late May. When they did his psa, it was not low enough and now we embark on radiation, maybe as early as December. He has a CT scan next week and then we see radiation oncology (who we saw in May as he was deciding on radiation or surgery)

He’s incontinent, which is super no fun. And it’s not as if you can chat about that with many people, like a rash or reflux or headaches. The bathrooms smell like a nursing home. He has nightmares all the time. I see he is trying hard to try hard, so I am trying hard too. He’s scared, and wants to pretend he isn’t, and I get that.

Trying to hit the sweet spot between treating him like normal but not expecting too much. Trying to not resent how people ask about him, but not me. Trying to not yell at his family for averting their gaze. Trying to not think about how we can’t make the smallest trip without prep like Normandy and even then, he is terrified the whole time. As is understandable.

He had hoped to retire next year,ironically we wanted at avert the stereotype of “waited too long to retire and then got sick and died”. We were going to take the fam to the beach next summer , a new thing, and now I feel like that’s super unrealistic. It could be worse, I tell myself. 6 years ago , unrelated, we thought he had ALS. Hugs to everyone.

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I’m so sorry with what you and your H are going through. But the point of this thread is asking about YOU. It’s why it exists. Feel free to vent. And even though we’re internet strangers we’re here for support.

I’m going to bet that the more you let others around you know about the situation the more support you’ll find on a day to day basis. Holding in your burden and trying to tackle it on your own is not always the best choice. Let others know.

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Oh, thank you for that post. I feel like there are very few people I can talk to. One couple is great, and my SIL offered to help any way she can. That’s about it. I’ve mentioned DH to a few people, like Board members, but there are crickets.

I’m worried about DH finishing the project he’s been working on for weeks. I haven’t designed wood in so long I can’t do it for him. He’s issued the foundation drawings for the house, but not the framing.

The other thing I’ve noticed is that I feel like I’m on a roller-coaster, literally - whenever DH forgets something I JUST said, my stomach sinks - I know it’s in my mind, but it feels physical.

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I don’t know if a gift link is necessary for this article. But having gone through years of caring for a father-in-law and aunt with vascular dementia/Alzheimer’s, I found Rebecca Barry’s essay here just beautiful (and helpful) and wanted to share it.

https://www.nytimes.com/2026/10/12/opinion/alzheimers-elderly-parent.html

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If people haven’t experienced what you’re going through they can’t relate. They sympathize but it just doesn’t hit them as it does others who already know the trauma. You look fine. You’re managing! But it doesn’t mean they don’t care or not willing to hellp. What it does mean is that you need to be direct in telling them your needs. That can range from “I need “X” done by tomorrow” to I need someone to drive me somewhere or even pick up a gallon of milk from the grocery store.

Wish we could help more than just listen but I know listening has value also.

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Oh, I doubt that it’s entirely in your mind alone. The constant stress of life’s trap door just popping open under your feet? That’s physical and mental. You never quite feel entirely safe, so to speak.

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Oh yeah, the other evening, H was bringing in the green waste huge rolling trash bins and because of a bad combo of poor vision from cataract surgery (over a year go but still adjusting), darkness of night, and water he poured out of trash bin, he fell and scratched up his face and shoulder.

He’s embarrassed and a bit sore and we had a wedding to attend 2 nights later and another in 2 weeks.

We bought some hydro colloidal bandages & nonstick gauze pads and D has been his sweet nursemaid. The store brands are NOT as good as expensive name brands because they get gummy & stick to wound and impair healing.

Having D in town for a month for the two weddings of cousins has been great! She will be back for some weeks for the holidays too.

Meanwhile H’s other health issues clamor for their share of attention as well. :frowning:

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Oh, I’m sorry. Your poor husband! It must be so frustrating.

I managed to work 13.6 hours yesterday. I’m kicking myself that I set up this vacation to Jamaica next week, but I did it before I realized how much DH was struggling. I will go and just try to relax and reset. We are going with a younger (early 40s) couple we’ve known only a year or so - we really hit it off with them. They have no kids (hmm, neither do our other favorite couple). They hiked the entire Appalachian Trail in their early 20s, so they are comfortable at our off-grid cabin (a lot of people aren’t). They’ve gone to this resort for 10 years in a row and just love it, so I impulsively said, “Why don’t we go with you this year?”

At least I’m feeling better than this past weekend, when I was really down.

The Realtor who helped us has been so sweet. After I emailed her that I just can’t think about selling the house now, she wrote and said she’d be glad to get together if I ever need a sounding board. Then she followed up with a second email offering support a couple of days ago. Maybe she’s just a smart businesswoman, but the follow-up meant a lot. I may take her up on it. She’s British and just a hoot, a bundle of energy.

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