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New member
Jan 6, 2019
Loved one DX
My pALS is my mom. She is newly diagnosed with bulbar onset ALS. As of now her mobility is not impacted too much, just her speech, swallowing and breathing.
We have been discussing living arrangements as her mobility and breathing decline.
Other pALS out there, what did you decide? Did you have a choice to move? Why? Was your home disability “accessible”? What were major factors in your decisions? What factors should we consider?
My mom is 67 years old on Medicare (no VA benefits), no long term insurance, owns a home (an hour away from me - I live 15 min from Mayo in FL), and collects her social security as well as my father’s (deceased 2.12). She is currently retired but is an artist in the community.
I know there’s no “one size fits all” with ALS. I’m just trying to facilitate her having a comfortable and optimal living arrangement with the best care she requires. I work full time but plan to care for her as needed.
Do most pALS chose to stay home, move in with family or long term care facility?
At what point does hospice become involved?

Wow. That was a lot.

I appreciate any and all feedback. ♥️
Such a complicated question!

My mom and I moved. I moved because my house was not disability friendly. My mom moved to be closer to family. My aunt and sister stayed put with very strong in house family support as did my uncle. My other aunt went into a facility.

She needs to look at resources and supports. The decision is hers but it impacts you. If she wants to stay put for now she probably needs a plan b because unless her breathing declines more rapidly than everything else she is going to need a lot of help.

How much can you do? You need to be realistic which is hard because you would probably do ANYTHING for your mom. But you have a life and obligations and need that life to be there after. Your mom wants that too.

An hour is a long way especially if you are working and or have a family. I did that for a while but it wasn’t sustainable nor could I maintain adequate oversight for my parents

Closer to clinic is nice but not the biggest issue.

It is horrible but money factors in too.
My PALS is my DH. We had hoped to retire in a few years and possibly move somewhere warmer before his diagnosis. We chose to stay in our house, but have it renovated to be more accessible. We turned our LR/DR into a BR/BA with a large, wheelchair accessible bathroom. We had a ramp installed in our garage. My thinking was, that if we moved, we would know no one. I felt that I would need support and have nowhere to turn. We have a great group of friends and neighbors who have been great help, both physically and emotionally. I do not regret the decision.

Whatever you decide, start sooner rather than later. Renovations take a while, and ALS does not take a break. Although everyone's progression is different, most will tell you that it's hard to stay ahead of it.

Good Luck with the decisions. None of this is easy.
I chose to move. I could have managed in my former condo but had just renovated it and it would have had to be reconfigured yet again to make it accessible. Then I would have to find outside caregivers but the condo was so small (1,300 sf) that I didn't think it was an ideal situation. I knew the condo would sell quickly for a good price so I put it up for sale.

A very close friend and I decided to go 50/50 on a large beachside condo. We gutted it and did a complete remodel. We both sold our former places in less than a month so the funds were used to remodel and furnish the new place. I'm so glad we did it as soon as we moved it because it took much longer than expected. We just had new windows put in recently. The grounds are accessible, for the most part and it has pools, sauna, social room. I call it my fancy nursing home because there are many elderly/disabled people living here. The good side of that is there are people who do caregiving living here or nearby.

I have no family so this was a very good option for me. It wasn't cheap and I couldn't have done it without my housemate but it works for us.

It is a very hard decision when you have family and no real timeline for the disease.

I think maybe your mom needs more input from you as regards how involved you want to be in her care and an analysis of her finances to see what possibilities are available. Are there any other family members who will step up and where do they live.
We moved from a 2 story house to a condo. 1 floor, elevator, someone else does grass cutting and snow removal ( living Canada snow is a bigger issue than grass). The only thing missing is indoor parking. It already has a walk in shower, and tall toilets. The place is wheelchair friendly. We did it all within 6 weeks of being diagnosed. Talk about a power purge. going from a 3 bedroom house with a furnished basement to a 2 bedroom condo. Life is simpler here than having and maintaining a house. Spiritually, it is a 10 minute wheelchair ride to my local parish.
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