Intimacy and ALS

[I can do this]

Hi everyone, my husband of 38 years old was diagnosed in 2018. So far he has lost all mobility, he's 24/7 on Trilogy, only eats soft mashed potatoes, and I have to manually help him with his bowel movements. He made the decision of no peg tube and no tracheostomy. I take care of him 24/7 on my own while still working 34 hours a week from home and taking care of our 8 year old daughter. Safe to say I'm exhausted, and I know people say look for help, and believe me we have tried, but it has been impossible.

At the beginning our intimacy was still great, we enjoyed making love, however as my role as wife shifts more to caregiver I found it harder and harder to be aroused, but he kept telling me being intimate was the only thing that made him happy so I continued to do it, for him, because I love him and I would do anything to make him happy.

But now that his needs are just so big, I can't do it anymore, in part because I find it hard to find the desire and in part because I'm exhausted. I finally told him how I feel, but I feel like I broke his heart, I feel guilty, I feel like I might have ruined our marriage. This disease has wrecked havoc on my mental health, I'm on Lexapro and Wellbutrin, but I still struggle sometimes, more now that I finally told him how I feel.

When will this be over? I'm reaching my limit, and it seems he might be close to an end, but since we know nothing about this disease he might as well continue living for another year in this situation. I'm tired of feeling tired and guilty and alone.

I just need to vent, and I need support, thought I might find it here.

 

[I can do this]

I feel like I need to say this, I STILL LOVE HIM SO MUCH, he is the love of my life.

 

[lgelb]

Of course you love him, Wisconsin. No one would ever suggest otherwise.

I cannot imagine working FT, rearing a child, and taking care of my husband as a PALS, though I did it pre-ALS with a different fatal disease so I understand some of what you are doing.

We do know that many PALS lose that sense of empathy and understanding for a couple of reasons: it would undermine their willingness to go on, so their sense of survival becomes denial, and the metabolism that ALS requires takes so much energy that introspection often goes out the window.

I doubt you ruined your marriage. But you may have broken the bubble that he built around himself. Give him time to process, and I imagine you can find the means of showing him that you are not rejecting him, but preserving some energy to meet everyone's combined needs. Maybe your daughter would like to stay with friends one weekend, or go on a school trip. She is probably feeling some of what you are, in a different sense.

If you are eligible for FMLA, it works by the calendar year -- maybe something to consider. Understanding that help for him has not been accessible (have you tried the student and retiree routes? do you have housing or whatever you do for work to trade?), what about child care and/or sharing your job? Having more people over to interact with him just to watch movies, play music, feed the birds?

This isn't about sex. This is about time and energy. Usually, these can be improved in some way.

I'm not sure how you got to Lexapro + Wellbutrin, but usually that combination is not recommended. There is an increased risk of side effects, including poor sleep, and it can make depression worse. I would really reconsider it in conjunction with your doctor since it sounds like it's not all that anyway.

Re mashed potatoes, if he can eat those, he can eat protein-rich (w/ eggs, nut butters) smoothies, that might reduce the mood/energy swings that often come from an overload of simple carbs. And have you tried pureed meat w/ gravy in a good blender? Non-dairy puddings? Etc. Make sure you are eating right yourself.

Best,
Laurie

 

[Mary2]

I Can Do This, You and your husband and daughter are a wonderful family. I admire all that you are doing! Certainly you are exhausted and too tired for physical intimacy. You and your husband did well to continue up to this point. I understand his disappointment but he loves you and in time will understand. Are you ready to bring in hospice? They usually provide an aide to help with washing several times a week. My thoughts are with you, that you continue to have energy and strength.

 

[Marnes77]

You poor thing. I can identify with all of your struggles. Working, caring, parenting a young child, intimacy issues, exhaustion - all of it. It's an horrendous and inhuman load.

My PALS passed two weeks ago. The exhaustion, grief and general horror still hasn't lifted. I am a total wreck. And responsibilities don't go anywhere either. This is just a new phase in the journey.

I go one breath at a time. At the moment I lack all strength beyond the very basics. Just have to hope that inch by inch things will improve.

ALS is traumatic. Your reactions are totally normal. The situation is what's abnormal.

Thinking of you. You are not alone.

 

[Greeneyes]

Hospice is a wonderful service. My brother who has ALS is on hospice. He has several services at this time through them. Acupuncture as needed, massage therapist, nursing,social service,spiritual services. It’s wonderful for him to have this interaction with others. His wife works full time at home and is his caretaker. This gives her a little break when they come and visit. I would highly consider this option for support.

 

[I can do this]

Thank you so much everyone for your words of encouragement and advice. This disease is so hard to navigate, but knowing I'm not alone really helps relieve some of the sadness. As an update, I decided to just kind of dial back from what I said to my husband, I told him I had said things without thinking first how to deliver my message, and we will continue to be intimate. Things have been going okay, I think I can live by my choice, after all I do want to make him happy, and I do enjoy being intimate. We are trying to find more time for ourselves alone.

As for my depression and anxiety medication, it is something we came up between my therapist and my PCP, I won't deny the first week I had some sleep disturbances and I lost appettite. But now I;m back to normal, and at least the constant feeling of sadness is gone. A lot feelings are gone but it's what I need at this time, I was getting very overwhelmed by depression, and I trust I will go back to normal in the future.

My job is very sensitive and unfortunately nobody else can do it if I'm gone, I'm trying to leave as much ready for when I really need to go out, but it won't be until my husband is actively dying, and I'm okay with it, working helps keep my mind of things and it gives me another role to focus than just being a caregiver.

We have tried finding someone to come over to help but there is a shortage of caregivers, we posted announcements everywhere and received almost no answers, we tried with one person which was extremely expensive and did a terrible job. We gave up on that really.

My husband hates having people over, he feels much shame from how he looks and says that having people over usually drains his energy. My brother moved in with us and has been a huge help with my daighter, the house and errands.

I'm tryoing to pack as much protein as I can with those mashed potatoes, he refuses to try smoothies, even Ensure is kinda hard for him to suction on.

I'm ready to bring in Hospice, but I still need to convince him, I do think it would be helpful, we are currently talking about it.

 

[I can do this]

I'm so sorry for your loss Marnes77, I imagine the pain you are going through, we grieve for years but even that doesn't help when it actually happens. Take it one breath at a time, after all that is what helped you survive until now, you got this!