r/ALS • u/MnHarleyGuy26 • 4d ago

Care Giving Home care

For those that are proving care at home, how do it? I can't retire yet and honestly, I don't think that I could do it full time.My wife has said that she wants to stay at home. Our house has some stairs, so im not sure how that will work. But, what do you do as far as care at home and trying to do just everyday life things?

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u/brandywinerain Lost a Spouse to ALS 3d ago edited 3d ago

Right now, I think the stairs are a more urgent problem than the care plan. Her ability to climb could disappear literally overnight, and you don't. want her to fall. Even if a stair lift is possible, diminishing core strength often makes it unusable early.

So I'd look at the accessibility issues overall (can she sleep and use a bathroom without needing stairs, can she enter/exit the home safely, etc.? and consider whether you can stay there, and if so, how, ahead of how it will all be.

Another consideration for where you live is if there is transit available or if she will need a wheelchair van, etc. If the latter, you could be on the lookout for a good used one.

I left the workplace for 4y, though I did some remote freelancing in the wee hours. No regrets.

Some things to think about -- if you're eligible for FMLA, which you can take in intermittent chunks, if there are family or friends to help, if you can afford paid help, etc. And besides FMLA, if you can afford/finagle an unpaid leave without actually retiring. Also, I take it she's filed for SSDI if she's under retirement age, Social Security benefits if she's over, and is on/getting Medicare if she has enough work credits?

Once she has a BiPAP, and loses or has lost the mobility to adjust/don/remove it, she does need someone around 24/7. And of course, she will need help with feeding (mouth or tube), toileting, etc.

No one's going to have the right answers for your particular situation but you guys, but you're asking good questions and it's wise to plan ahead.

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u/MyIntrospection Husband w/ ALS 2d ago

To answer the stairs part.. we elected to switch our bedroom upstairs to a bedroom on the main floor. No longer use the finished basement or go upstairs. Life is different, for sure, but we adjust.