Where are all my men caregivers

kjaymes · September 12

Hi All,

Decided to place another post. Been going through some things.

Although my DW was officially diagnosed with Alzheimers a few months ago, she's been showing signs for years. Forgetfulness, repeating herself, trouble doing things that she used to do without second thought. She has also been having communication issues for at least a year and half, maybe two, where she doesn't make alot of sense when she's speaking (seems to be on a completely different topic, and her words are jumbled, has trouble finding the right words, etc.). She had a pet scan last week and has been diagnosed with "PPA-Primary Progressive Aphasia". This has been really hard! My wife is the smartest woman I've ever known! She'd throw words out while we were having great conversation that would send me to google to find out what the word meant. I really miss those great conversations. Even more devastating than the communication issues is her not recognizing who I am most of the time. This started about 3-4 months ago. She thinks I'm a friend of her husband (me) who sometimes she's good with and sometimes she can't stand. When she gets angry at the friend (me), she calls her husband (me) to see when I'm coming home. When she does this I am actually sitting in the next room. With this situation she has been diagnosed with "Capgrass Syndrome".

She has bags full of her clothes and belongings all over our living room with plans to go home EVERY night. I'm hoping at some point this might stop…probably not.

I'm stating all of this as a preface to my point-Where are all the men caregivers on these forums!

I read alot of the posts here and on facebook. People are really going through it! But, it's mostly women caregivers posting.

Not stating this as a negative, because the women that do post have wonderful ideas and great information that is needed by us all.

So, as a man caregiver, I'll share-

My wife is 66 years old and I am 64 (just turned 64 this week!). We are still relatively young, or should i say "too young to be old and to old to be young".

I love my wife so much!…..and I miss my wife so much!, and I know none of this is her fault!

Because of her not recognizing me most of the time, we now sleep in different rooms so I don't scare her or make her uncomfortable.

I miss our sex life, I miss her touch, I miss the kisses on the forehead, I miss the long hugs! I miss waking up with her by my side while the sun sneaks through our bedroom windows.

I am at this point in life-Lonely! (Yes, men get lonely).

I miss our great conversations. The great trips we'd take together. I miss her having her independence. I miss me being able to leave the house without worrying about her. I miss so many things that we were able to do before this dreadful disease came along!

As a man, I have needs, I have physical needs, emotional needs (yes men have emotional needs). I would never leave my wife! Couldn't live with myself if I did. But I gotta say!-I don't want to live in this "life of absence" for the next 6,8,10 years.

AS A MAN-I don't know what to do!

Just sharing-as a man

Thanks for listening

blacksparky · September 12

Boy this was my exact life almost a few years back. My DW was initially diagnosed with PPA early in 2023 with an Alzheimer’s diagnoses in oct 2023. She was 53 then and now 57. She showed signs of this disease years before the diagnoses. We never connected the dots as she was in her late 40’s and we didn’t even realize that there was such a thing as EOAD. The first 18 months was ok as we were still able to do the things that we loved like traveling, cruising etc. Early 2025 she had her first seizure. Never witnessing a seizure before it freaked me out. She has since had 14 more seizures since March 2025. I cared for her the last 4 years until I realized that I couldn’t give her the care as well as a MC facility could. I placed her in July. This was the hardest decision I have ever had to make. It’s been almost 3 months and I’m happy to say my DW has acclimated very well. After lots of guilt that first few weeks, I am now content to no longer being her only caregiver and now her #1 advocate for her care now. I feel all the same emotions and needs as you described. I hate this terrible disease.

kjaymes · September 12

https://alzconnected.org/discussion/comment/282090#Comment_282090

Thanks for sharing blacksparky. Wow! 53 years old! That's tough! Keep hanging in there my man!

Russinator · September 12

You took the words out of my mouth: I miss our sex life, I miss her touch, I miss the kisses on the forehead, I miss the long hugs! I miss waking up with her by my side while the sun sneaks through our bedroom windows.

tboard · September 12

https://alzconnected.org/discussion/77087/where-are-all-my-men-caregivers

I am not a man. I suspect there are more female care givers than there are male caregivers. From what you wrote how you feel is very similar to how I feel as a woman. I have been at the caregiving thing longer and my husband is now in a facility receiving hospice care. It feels like my life is mostly over. I am three years older than you are and was a couple years younger than you are now when I started caring for my spouse and about 9 years younger than you are now when I started providing care for my parents. Dementias are nasty diseases. They are not treated like cancer. We start feeling the loss long before our love ones pass away and sometimes live many years in a state of anticipatory grief.

dcare45 · September 12

My DW is in stage 6. It's been MANY years since we have had intimate relations. She lets me give her little kisses and hugs. That does not make it easier. It reminds me of what we are missing. The physical and emotional needs are all too real and strong. I also feel them a lot. However, I stood before God and Family and made a commitment to my Wife. I pray I am able to uphold it. This will be the most difficult thing you will ever do, I know it has been for me. There is no right or wrong answer that fits everyone. It's a long crappy journey and you're going to have to make a lot of choices that are best for you and your DW. Wishing you well.

beachwalker5 · September 12

We're out here. I suspect we're out-numbered by women just due to senior demographics. I occasionally attend an in-person caregivers support group and the women always outnumber the men in the room. Sometimes I'm the only dude there! I generally don't think much about caregiver gender difference, both men and women are dealing with the same challenges of daily stress, uncertainty, inconvenience, frustration, loss of our own freedom and independence, loss of the one we use to know so well but is slowly disappearing, loneliness, overwhelming situations and anticipatory grief. I think the tendency of us men to be "problem solvers" and to "buckle-up and carry-on" probably results in us repressing our feelings and going into a permanent state of "survival mode". This is probably not the best state for any of us to constantly live in health-wise. Thank you kjaymes for posting such an honest and vulnerable disclosure. I think you perfectly expressed what I and probably what most of the other guys on this forum are feeling.

TomC0917 · September 12

We're out here doing the best with can with a disease that just keeps progressing. My DW, 78, was diagnosed with last onset AD 12 months ago. I've never done anything tougher than this in my 76 years. The AD was compounded by issues with cataracts, breast cancer, aFib and gastric issues resulting in her gallbladder being removed just last month. Like the ocean it keeps coming at you, wave after wave after wave. I truly appreciate ALZCONNECTED. No matter the age, gender or relationship I have found support and understanding from the people sharing here. Like many 12 step programs I try keeping it together one day at a time.

stananon · September 12

Kjaymes, you pretty much described by daily life: capgrass, packing to go home (or to some friend she hasn't seen in 45 years), communication issues, etc. I have a new one the last few days - wanting to eat or use inappropriate products (i've already hidden the poisons but now dw uses everyday products inappropriately).

And i continue on…feeling that a facility would be the worst thing that could happen to her…maybe keep her safe, but at a cost of her losing those few moments of joy when she is somewhat lucid and doing the things she enjoys most. Not to mention, that she is a champion showtimer. And she still has most daily living skills. I do know that a facility will be the only option at some point.

She is also at risk for falls, and would the staff be able to observe and keep her safe for 24 hours. I am under the impression that the MC I would probably place her at does periodic sweeps to check on the residents, and their solution might be restraints, whereas I pretty much am here 24/7. Then again, its burning me out and I am good most of the time, but that evening wanting to leave just leaves me crazy - sometimes I can redirect, but sometimes i just lose it.

This horrible disease just eats up everything it touches.

Jeff H · September 13

All of the things you are missing is so true for most everyone here. I'm sorry for you. My DW was officially diagnosed with Alzheimer's through a blood test in October last year at age 66. We are now both 67. My DW is now fully into stage 6 and I am teetering at looking at MC placement. It has progressed so rapidly! It's a tough haul but I love my wife and I want to do what's best for her. Like Blacksparky said, "I hate this terrible disease."

pabutah · September 13

You are not alone. Many of the symptoms you described my wife has and my wife is very intelligent and attempts to explain herself when she forgets. Her attention span is very poor. Neither of us have really accepted what is our future and it is sometimes difficult for me to accept it. It is extremely discouraging for both of us.

BPS · September 13

My wife was diagnosed over 10 years ago at 63 years old. She is 3 years older than me. We had some pretty big marriage issues for a long time. I was getting close to leaving when she was diagnosed so I stayed to take care of her. 2 years ago she had a stroke and that is when she moved to MC. I go see her almost every day. I have the feeling of wanting to be close to some one that cares about me and I can share a meaningful life with. I am married and believe I should stay faithful, but I do think about a life with no dementia with some one special. I am 70 now so I don't know if that will ever happen. Others have talked about having a new relationship while their wife is still alive and I understand that, but I can't do it and feel good about it.

Carl46 · September 14

I am a male caregiver and cared for my wife with AD from diagnosis in 2017 until death from lymphoma in 2025. Women outnumber men after age 40, so there are more women caretakers, but there are men in the trenches too.

I am sorry you are in this position. The disease takes a huge chunk out of the "golden years" for you and for your LO. For what it's worth, I have found that I don't really want another intimate relationship since my wife's death. I have female friends, but I cringe at the thought of assuming responsibility for another person.

Gig Harbor · September 14

I cared for my husband for 9 years and was a nurse for 42 years. I can’t imagine becoming involved with someone and ending up in a caregiver role again. I have cultivated a lot of female friends and at the end of an evening out I am happy to come home alone. Sometimes I think that it is sad that I feel this way but have no desire to change it.

Barbie300 · September 14

I think there are more women involved in support groups because women are more likely to want to participate than men.

mdsidoti · September 16

Thanks for your post kjaymes. I read this and thought I could’ve written this Word for Word. My wife was diagnosed two years ago and she’s now 69. I’m 62 and I don’t really know what I’m doing. I come here and feel better in the sense that I’m not alone and see that others deal with some of the same things I am. I find it especially difficult to accept our lives will be nothing like we envisioned for our retirement and enjoying the payoff of a lot of years of hard work. Right now, my wife thinks that there are other women in the house that I am sleeping with, showering with and I have a new girlfriend. Nothing i do or say distracts her from those thoughts. I fall into the trap of trying to “reason”. It hurts to see her look at me thinking that. More devastating is the fact I’m powerless over this brutal disease. I’m still working 4 days a week away from home and now thinking do I need to quit to be home? I worry about her all day. Thanks again for your post. Good luck to you.

kjaymes · September 16

https://alzconnected.org/discussion/comment/282105#Comment_282105

Thank you dcare45

kjaymes · September 16

https://alzconnected.org/discussion/comment/282111#Comment_282111

Thanks Beachwalker5. My occupation was a problem solver for 40 years! This is certainly a problem I cannot fix. We'll get through it, because that's what we do. Hang in there, as will I.

kjaymes · September 16

https://alzconnected.org/discussion/comment/282104#Comment_282104

Thanks tboard. Hopefully your life is not almost over and you find peace and happiness in your future. Hang in there best possible.

kjaymes · September 16

https://alzconnected.org/discussion/comment/282114#Comment_282114

Thanks TomC0917, you are dealing with alot. AD is very difficult to deal with by itself. Hoping the best for you my man.

Snipe · September 16

My DW is stage 5, we’re both 70 and married 48 years. Yes, like all, I miss the intimacy of our relationship. I miss the quiet moments, happy hours, nice dinners, friends and meaningful conversation. Shifting our roles to that of a caregiver is not where we expected to be but here we are.

I picked my wife up after daycare last week and she started to cry. I asked her what was wrong and she said she wanted to love me. I told her she does and that I loved her too. She said “no, I just want things go back to be the way they used to be”. It broke my heart to hear her say that in a lucid way. This is such a terrible disease to live with.

Lilydaisy · September 17

I think there are lots of men caregivers though demographically maybe more women. But I have read that men have a harder time sharing their emotions or fears, so that may be a factor. I give you credit for seeking out some shared insights from experienced people. I have learned after reading many, many posts that in most cases male or female doesn't matter.

My DW is in stage 5/6, 10 years now, and age 75. I feel MC is now months away rather than years. There is very little intimacy, and helping her take showers and get dressed has changed all thoughts of sexuality. I can live with all of that. You are at an earlier point.

For so many years she was the mother, homemaker, plumber, gardener, launderer, cook and more, so that what little I do now seems small and I am glad to do it. But, yes, it is hard to see this unfold. It's like watching a scary movie knowing that it is going to get worse, but you don't know what is going to happen.

I feel that because you are already seeking input, you will handle it. Best wishes.

AlekoW · September 17

Hey, Dude, kjaymes. My DW (61) was dx'd with Younger/Early onset (YOAD) (at 60 a month & a half shy of turning 61); she's still early into things (Stage 2/3 using the DBAT format). Due to insane insurance issues that continue to be highly fluid much to my frustration and heightened axiety, she's been mostsly untreated until today—we finally got into UCLA's Easton/Rubin center for AD. This morning was her fist appt with the neurologist who also does research & specializes in women & YOAD. Holee skies openin' wide, Batman! There's actually a path, there's treatment she's started on, I can breathe… not looking forward to feeling, but I know it's comin'; I've made peace with my need to and the inevitability of feeling/connecting to my heart more fully. I can see you're in that space.

I lost my business having to shift gears to care for her. Finances keep me up more nights than not, but our adult kids are helping out, one moved back in to help with care & rent (she's in healthcare so caregiving is part of her thing already). We're both Xers too young to be be here; 30's in 60-somethin' y.o. bodies & now this horribleness. She & I were always a team, 38 years together/36 married. We were climbers/mountaineers, backpackers, & surfers. We live between mountains and the Pacific, but neither is all that accessible like they used to be. She's always been tack-sharp, quick wit, intuitive & a do-er/solutionizer. It's a roller coaster with bad days/weeks when she's can't remember things, or can't remember what she can't remember. The repetition, the uncertainty, the frustrations that she doesn't recognize things. She's no longer independent; a quality that drew me to her in the first place (somewhere on here I wrote the way we met; she pursued me, she was ridiculously awesome, and that was that). A guy in my Old Man Group (I'm the kid among 5 dudes in their 70s & 80s) is an M.D. with AD. He loves to remind me, "this is the new normal, this is the new baseline—roll with it," and maximize what's doable now, like day trips and overnights where we can swing it. At some point that won't be a thing.

It's a flippin' horrible journey to be on, but it's a journey. I dunno TL;DR. Anyway, I want to give you a guy-specific caregiver of spouses link.

There is an online group (I think the only one in the US) for male caregiver partners & spouses of a person with younger-onset dementia (link below to have a look). I found them through some guys on our Alz Association caregiver groups & some guys here. I just started with the Lorenzo's male caregiver group and it's understandably a different animal—we dudes experience stuff differently that women to varying degree. If you've been in a men's group you'll recognize the vibe (my experience was with mythopoetic groups in the '90s and early 'aughts—Lorenzo's isn't mythopoetic or ritual based FWIW. I still dig it).

https://www.lorenzoshouse.org/clubs#light-lounge

There's a Younger onset caregiver group in SoCal (online) & a caregiver group (All stages of AD) online in SoCal too, both sponsored by Alz Assoc.

You're in it. Ahead of me, and I see you nonetheless.

Where are all my men caregivers

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