Worried about what's to come

[AdamCr]

My wife was diagnosed in January and has gone from having problems in one hand in the spring to full blown immobility now. Progression seems fast.

Right now she requires multiple hours of care just to transfer from bed to chair, go to the bathroom and cleanup. I'm concerned about the level of care that will be required when she progresses further. We have five very young children and I need to work full time in order to provide them with childcare/health insurance/food.
This unfortunately means that there is nothing left over for hiring other help, so I am the sole caregiver. Other family members are unwilling or unable to help.

Reading other people's experiences, I think it's unrealistic to think I'll be able to be a good father to our children and take care of my wife 24/7. I think that the best option might be to get divorced and I can focus on the kids and help her as I can and she can qualify for assistance since my income no longer messes that up. When I discuss this with people they are horrified that I would abandon her and I'm told that I'll find the strength within and it will work out, but I think that's feel-good malarkey.

So straight talk, am I crazy in thinking that this situation probably isn't sustainable as we move into more advanced ALS? Am I a terrible person for considering this option?

 

[Nikki J]

I am so very sorry. It is completely impossible to work full time outside the home and care for someone with advanced ALS. It is virtually impossible to do so if you have a very flexible WFH job. This is before you factor in the needs of five children

do you have a social worker at your clinic or through your ALSA? I think ( though am not sure) your state may have medicaid waiver programs through which you can get help without divorce. Start with the social worker and if you can’t work it out a lawyer with expertise in this area.

you can’t do it alone. You just can’t. so if it comes down to it young children come first. Sometimes a nursing home is necessary but look at everything first. If she has progressed to total paralysis in a matter of a few months this sounds very fast so you may not be looking at an extended time period. Again I am sorry

 

[Jhettinger]

ditto Nikki J + Prayers
get church and school in the loop

 

[lgelb]

You might be able to get live-in help for room and board rather than a salary if you are in a desirable area, or have students pull shifts since most colleges are hybrid or virtual now. I am not sure that divorce, which carries expenses of its own, is the best option given that indeed the timeline seems fast as Nikki mentioned, though I am not sure how long ago one hand was the only problem. And, of course, you are talking about less mother/child time near her end of life. Even young, kids are affected.

Does she use a BiPAP? Does she have a wheelchair, patient lift, and hospital bed? Does she still eat on her own?

In addition to Medicaid as Nikki mentions, I'd also check in with the senior services/disability services departments in Minneapolis and/or Hennepin County even though I gather you are not seniors. Sometimes they know of programs that can help, especially given the five young kids.

Best,
Laurie

 

[Elkhorn3]

People who say "you'll find the strength and everything will work out" have no idea. You're wise to recognize you can't do this alone, and you also can't wipe out your finances and your family while trying. I agree with others' useful suggestions here. Ask social workers, hospice, local services, nursing students, everyone you can ask.

You might have to be prepared to pay for some of this care.

The fast-progressing ALS is its own trauma. (My PALS is on that same train.) My heart goes out to you.

 

[AdamCr]

Thank you for your replies. We've been pretty isolated with Covid as myself and one of my kids are at extreme risk, and with distance learning for two of our kids and every month throwing a new curveball with caregiving it's been seeming insurmountable lately. I'll start with the social worker.

 

[Zinta]

My husband progressed very quickly, like your wife. She may be completely paralyzed due to ALS, but she, her brain and her heart and her emotions are still 100% there. The last thing she needs right now is to feel that her illness is destroying your family. she has enough horror to deal with.
That being said, some ideas.
Reach out to all of your local churches, synagogues, whatever, whether you are a believer or not.
Reach out to your local newspapers, TV stations, radio stations, online groups,
Make your need for help your wife be heard and become a story. Be shameless for what you need. A young family with 5 children will resonate.

Also, I have to ask. What kind of employer do you have that cannot help support you during this horrific experience?

My husband showed a small sign in February and died of ALS in October the same year. Been there, done that 3 years ago. My heart is beyond broken now, but in the midst of the battle, it was very frustrating. Don’t let your wife down. She gave you the sweet babies that you both love.

be strong.
sending of my support

 

[Blackeyes]

Other people unfortunately don’t see the big picture. We all want to believe that if our loved ones get sick we will be there right by their side 24/7 and happy to do it. That’s the fairy tale we told ourselves when we said our vows. Truth is. Being a caretaker and watching the life of someone we love be slowly taken from them. And each step they lose just a little more of themselves. And until someone walks in your shoes they can’t grasp the situation. Nor should be offering advice. People here have all been there one way or another. We’ve walked in your shoes and we feel what you feel. And I think I can safely say everyone understands what you mean.
getting a divorce only means on paper the government needs to help her more. I know a young couple who had to do that so she could move into a home so he could work and take care of the kids and not have to try and pay for her care as well as himself and children. Always talk to a lawyer. See what grants are available in your area. DEMAND help from Anyone capable of giving it. Your not A bad person for thinking this way and ppl are only “horrified” because thankfully they’ve never had to deal with it.
I wish you well and think you should def discuss with a lawyer for guidance.
I hope you find the answers you seek.
Cindy

 

[ARCG]

I agree with Blackeyes, no one understands the cost associated with full time care of an ALS patient (not to mention finding qualified help who understand the use and maintenance of the vast array of equipment).

Fortunately, I was retired when my husband became ill, so could learn how to care for him, otherwise I don’t know how we would have handled it. It is not right that health insurance doesn’t cover home health aids for this horrific illness and people are forced to divorce so the pals can get care without sacrificing his/her children’s support, but it is an unfortunate fact and no one should judge the folks who must make those hard decisions.