ALS and spousal or partner relationships

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Kristina1

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If you feel comfortable sharing, how has ALS impacted your marriage or relationship with your significant other? I'm interested to hear from PALS and CALS both. If you're single, how has ALS impacted your romantic/sex life? For example, do you still date?

I've been reflecting on this lately. As awful as ALS is, my relationship with my husband is stronger than it's ever been before and I'm grateful for that. Around the time that I was diagnosed we were having problems in our relationship. But when I was diagnosed, all our problems suddenly seemed so petty and small. We cleaved together to face the fear and grief.

Since then our relationship has grown stronger and stronger. I think we both admire and respect each other a lot these days. I see the way my husband has stepped up to support me and take care of our family and I'm in awe of him. He works full time, cares for me, cares for our 3 kids one of whom has special needs, has taken over the household duties (cooking, cleaning, laundry). And most days he does it with a smile on his face. Similarly he admires me for how I handle my disease (I find myself FAR less worthy of admiration compared to him but that's another topic).

ALS ruins your sense of private bodily dignity. My husband has sat on his knees in front of the toilet holding my legs bent and lifted at a particular angle that allowed me to bear down and poop because I was constipated...oh, and did I say constipated? let's not forget the enemas he's administered and the times he's had to wipe my bum because we weren't at home with our blessed bidet. But somehow this has increased our intimacy. I've had to let down so many walls between us. Despite how utterly UN-sexy caring for a person with ALS is, it's brought us so close and that intimacy bears fruit in the bedroom. Our sex life is surprisingly kind of great right now, even though I have such limited mobility and even though he's seen me at my most rock-bottom unsexiest.


So lately I've been reflecting on this, and the irony that it's only now that I'm dying that we've finally achieved the relationship I always wanted for us.
 

KimT

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Kristina,

First, your husband is blessed to have you. I've seen your pictures and you are stunning. I also know how devoted you are to you beautiful children.

My situation is very different but, I guess. it should warrant an explanation......prepare for long post.

I met my "housemate" in 1990. We were both hired on as full-time faculty at the college around the same time. I had administrative duties and he was head of reference/research so we both had 12-month contracts. We became friends and, within six months, our friendship turned romantic. After a few more months we moved in together. I'll cut out all the drama but, suffice to say, we made better friends than lovers. We evolved to a mother/son relationship as I reverted back to being a caregiver. I left him in 2000. I married another man (S. Titus) about 18 months after I left Fred and it really hurt him. We had stayed friends, my relatives all loved him, and he knew that our friendship would be more distant after my marriage.

My husband was a narcissist. I'm not sure how I missed it but I did. He was extremely controlling. The marriage lasted 7 years. It would have ended sooner but he took many vacations and was away just as much as he was home. One day he went on a vacation and I packed his bags and put them in storage. I gave him a settlement to get him out the door. He was brilliant but rarely worked.

So I went on to buy my retirement condo on a pretty lake and completely remodeled it. I lived happily there, alone, for seven years. Then I was diagnosed. None of my relatives were interested in helping or even visiting. Some were in denial and the others (mostly the medical professionals) just stayed away.

Fred was very hesitant to offer me help but he visited every day and cried a lot. One day he said I could move in with him and he would do his best to help me. He had retired a year earlier and was adrift in his life. That's when I found the condo on his favorite beach, the one he surfed all the time we were together. We decided to go 50/50 on it and both sold our homes.

Fred and I will never be anything but friends. I would be supportive if he found someone. He's a homebody and really depends on me for a lot. He does make me laugh and loves Ace. We don't have secrets.

Now, about dating. I'm not interested. I have had several men approach me but I wouldn't wish ME on any of them plus I would never do that to Fred again. He would be very hurt if I had a serious relationship. He'd think I was just using him until something better came along. There is one guy I swim with, a bit younger, and we have a friendship. He sends me songs and we're sort of like grade school crush-type kids. A few men approached me at church. I flat out tell them I have ALS and that pretty much scares them off.

As regards sex. I'm very lucky. After my diagnosis, any urge for sex went away and stayed gone. Maybe it's the meds, maybe the disease coupled with menopause, maybe just God's gift to me to make my life less complicated. Most likely, it's the fact that I had plenty of sex when I was younger and I'm in a lot of pain.

Kristina, you're not dead yet. Enjoy your marriage. I'm happy for you and for your husband.
 

KarenNWendyn

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Kristina, I’m so glad you and your husband are closer than ever. That really touches me.

I would say that ALS has brought my spouse/partner/CALS and I closer in some ways, further apart in a few others. We’ve been together almost 21 years and have always had a good relationship. ALS has changed the nature of our relationship from equal partners to caregiver/ patient and sometimes it’s hard to recapture the equal partner dynamic.

Being a CALS has sapped my partner’s energy. When she gets a break from dealing with my shenanigans, she often collapses in front of the TV. We have brought in outside caregivers 5 mornings a week, soon to be 6. This has helped my partner quite a bit, but the flip side is that much of my time is spent being cared for. I find myself craving alone time and also time to spend with friends who want to visit.

I am also now sleeping in a hospital bed downstairs because of my mobility limitations and inability to get out of a standard bed. My partner decided she needed her own ALS-free space, so she moved our queen bed into a room upstairs and made that her sanctuary. Now she sleeps with the dog, not me.

She does tuck me in at night and get me up in the morning, and the bedtime routine is very sweet. I feel the love. We also can talk freely about end of life issues and have had some very profound and intimate discussions on many meaningful topics. We have shared lots of tears, hugs, and kisses. I believe ALS brings out the best and the worst in people.

I feel that my partner and I have a close and loving relationship despite the damn monster.
 
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Kristina1

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Kim, thanks for sharing. Fred sounds like such a devoted friend. I'm glad the dynamic between you works. <3

Karen, you bring up some good points and we deal with some of those things too. I too have at times struggled with trying to maintain equal partnership. I remember one time Javad said something in his "parent" voice and it was either a chastisement or an order or something and I snapped "don't talk to me like one of the kids!" And that's exactly what he'd done, no doubt accidentally, but it's moments like that where I'm another one of his charges, not his wife, in that moment and we both, but especially me, struggle to regain equilibrium.

My husband too gets overburdened as a CALS, and we rely in PCAs to take a good number of daily caregiving hours. There are people in our house every day and I'm hardly ever alone. Im so grateful for the support, but like you I miss being alone.

Your wife sounds like she loves you very much. 21 years together is such an accomplishment! We are at 11. :)
 

Dgnk

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Kristina, such a bittersweet piece of life, nice that you’ve been able to find the nuggets of gold hiding amongst the s*** that is this illness. And so enlightening to hear how others are experiencing the morphing relationship.
My husband (lost his first wife to cancer at age 42) is a very social, upbeat, can-do Irishman, I’ve always said he has terminal optimism. He has built multiple ramps, installed bars, handles and trapezes all over the place, making me as independent as possible. He created a block and tackle system with a harness to haul me into our motorhome so I could go to my sons wedding in Montana, and visit my Dad in Vermont. He is totally forgiving when my irrational rage flows onto him.
But he just doesn’t get it, how hard this is going to get, and won’t discuss it. And I don’t feel ok with him spending the last part of his active and healthy years stuck meeting my needs instead of doing the kind of stuff that really feeds him. He’s 72 and who knows how many good fun healthy years he has left.
So I have arranged to move into an assisted living facility in May. I sure hope I’m doing the right thing. Our tiny home can not accommodate the kind of help I will soon need, so in that way it’s a no-brainer.
I look forward to hearing about others’ experience with the relationship changes forced by our progression.
 

Tkthiede

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Kristina, thank you for sharing such a personal part of your life. My husband and I have been married 37 years. I was diagnosed in January and (to me) progressed pretty rapidly. I still can walk with a cane in the house but need a rollator or WC outside the home. In 2000 my husband had a bad accident on the highway and required multiple surgeries. I spent 2 or 3 years doing most everything for him. By 2010 ish he was doing much better but ended up losing his job due to him being on pain control meds. It was a rough time.
Flash forward to 4 years ago when he was diagnosed with prostate cancer. Our intimate life was altered drastically from the treatment side effects.
Now we have totally reversed roles and he is caring for me. He never acts frustrated or irritated (except when I insist on doing something that we both know I can’t do anymore.). I think our relationship is much closer than ever before. When I was caregiving for him, I was still working 45 - 50 hours a week, caring for two teenagers and an aging mother. I can honestly say that I was nowhere near as patient as he is with me. Both of us being retired has made it easier but he is just so good to me. Our intimate time is impacted by both of our physical limitations but we touch more, hug more, talk more and really communicate so much better. I’m always reaching for his hand and he’s happy to hold mine for as long as I need him to. So yes, this disease has brought us closer together but it’s kind of bittersweet in that I know he’ll miss me more because of this time we’ve had.
 

Doglady

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My husband of 34 years and I are 72 and 74 years old. We always had the typical gender roles in our relationship. I did everything in the house but also the yard. He has a lot of health problems over the past 10+ years and I had been his caretaker prior to my diagnosis. Our house has been modified and does work for my new needs and equipment. We plan to stay here. I now have my own bedroom and go to bed a lot earlier than him but he stops in to chat and check on me before he goes to bed himself - with the dogs. It’s been a difficult transition for both of us to see the roles change, and he’s not actually capable of doing too much - so I have several hours of professional help every day. I won’t go into all his problems but he will be starting out-of-the-home dialysis treatments 3 days a week in a few months. It is nice to have his support and he’s gotten better at helping me but sometimes he doesn’t quite “get it”. He can be very crabby but usually has a great sense of humor and is very upbeat so that’s a big help. And as my voice gets weaker I don’t have the energy to engage in arguments when his mood is bad. He’s hard of hearing and my voice is failing. LOL. Basically we are getting along better than we used to but some days are still rough. Like everyone with ALS!
 

Doglady

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Sorry about that. Hope it’s not always that way.
 

notBrad

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No, it's actually pretty rare, but it happens enough to piss me off...
 

KimT

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I'm sorry, Brad. You can be pissed off here anytime. I would be.
 

Kristina1

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Brad I'm sorry, that is infuriating I'm sure. While it's not the same thing I find that sometimes statements of intention that I make about my body are argued or even ignored by whoever is helping me because they think they have a better idea (for example I might say "put my legs here" or "sit me against the _____" etc). This immediately triggers affront and anger in me because it's MY body and just because I need you to help me move it does not give you the right to decide where/how to move it. My dad did this to me a bunch of times over the holidays when I went to stay with them. I love him so much and he sincerely did not realize that what he was doing was wrong/offensive to me. He thought he was helping by over-riding my expressed desire with a "better" idea.
 

notBrad

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You nailed it Kristina.! Now throw technology into the mix and what I call "death by pillows" and you can imagine the frustration...

And like your father she means well and it is done out of love, which can't decide if that makes it worse or better..
 

Doglady

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Brad, it happens to me too, but has improved quite a bit lately. My husband frequently thinks he knows what I need better than I do. Funnily enough he came away from a support group meeting having heard another CALS complaining about their PALS being so resistant to “good advice” with a better understanding of what he now calls the difference between a “caregiver” and a “caretaker “. We use that as a humorous reminder to ourselves by saying “caretaker “ when he pushes his own ideas too much. And of course once in awhile he’s right, too. I’m wondering how everything will go if I can’t speak at all and am reliant on technology to communicate.
 

Loub66

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I have so much sorrow when it comes to this topic. My husband and I have been together almost 30 years. He is only 53. Prime time. Our lovemaking was always so beautiful. Such lust for life. Watching his body decline and muscles weaken to the point that he’s no longer able is a huge loss. The meds don’t help the situation either. We are very close. Love comes in other forms now...cuddling..hand holding. Special glances. Simple things. So much loss as progression of disease continues.
 
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