Dad Diagnosed

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New member
Jul 11, 2021
My dad got his second opinion/ confirmation from an ALS clinic in late July. He's had several EMGs all of them "dirty", all of them showing that it's happening all over his body. Right now he's just lost function in one of his hands.

Im terrified (obviously everyone here is too), but my dad has lived alone for 30 years. He lives half way across the country from me. I can't move back home because my husband is a scientist at a national lab, he's in the middle of the project he's building his tenure case on. Plus even if he wanted to leave/ reset his tenure clock, there's only been 2 openings in my husband's field in 100 miles of my dad in the past 5 years. We have two kids under 5. I also really don't think my dad will move here. He really can't take the climate here (in a northern city) he will only visit us between June and September.

So that leaves me stuck half a country away, terrified about who is going to take care of my dad and how I am going to make sure he gets what he needs when he needs it. He is focusing on doing all of the things he wont be able to do soon, which I support and I don't know how ready he is to talk about changes and what comes next (in terms of help, we have talked about medical preferences). He has lots of friends, but I don't know how reliable they are. My aunt and uncle live there and my aunt is very reliable, but I don't think he's going to move in with them.

I need advice. We need to start looking for somewhere new for him to live (I don't think he's super attached to the condo he has now, but it has LOTS of stairs). Do we look for an apartment for disabled people or buy a new condo and renovate? Do we consider a second bedroom for a paid care giver? I see that lots of people on this forum say it's better to continue to live at home with ALS, I don't love that idea since he's alone, but I've seen the arguments about the SNFs not having the proper training/resources. Also of course I'll ask him when he's ready to talk about it, I just want to be ready.

Also any gear that was helpful when you or your PALs couldn't use your hand but could use your arm still?
I'm sorry to welcome you here and very sorry to hear about your dad.

I was diagnosed in August 2019, with the first symptom in August 2018. My husband died six weeks after I was diagnosed, so I live alone and depend on some paid caregivers for the assistance I need. At this point, I have very little use of my hands and arms. My legs are getting a bit weak, but I can still walk short distances using a walker - although that's getting more difficult because it's hard for me to hang onto the walker with my hands. My back and neck muscles are quite weak, so my head is tipped forward when I stand which impacts my balance. I do have a powered wheelchair (PWC) and a wheelchair accessible van, which I use when I go out. But, I really don't like being in the wheelchair very much, so I do whatever I can to stay as mobile as possible (stretching and range of motion exercises). My voice and ability to chew and swallow are all still pretty good. I don't have a feeding tube or BiPAP machine, and will likely decline them when they are recommended - most PALS do choose to get those items, though, when recommended. All that said, though, I still spend much my days on my own and I'm on my own throughout the night. I have someone here every morning to cook breakfast for me, feed me, and get me showered and dressed. I then have someone here each evening to make dinner, feed me, and get me ready for bed. I snack during the day on nuts and fruit that get set out for me in the morning.

I have a fairly large group off really good friends, both locally and out of town. They have done a great job of keeping engaged with me and including me in their activities. I don't know what I would do without that, but I do know that I would be much less happy.

I give a lot of credit to the technology that I have set up for giving me continued independence. This includes using Voice Control on iPhone, iPad, and Mac computer. I also have door locks, lights, window blinds, and remote controls set up with voice commands using Siri and Alexa devices. I live in a single floor condo that already had a wide hallway and pretty open floor plan. The only thing I did was remodel the bathroom to take out a big tub and put in a large, curbless shower and widen doorways into the master bedroom and the master bathroom.

I currently pay for about 35 hours of caregiving per week. This is a combination of a few professional caregivers who have their own business (I don't use agencies) and a few friends who I pay for the hours they help me. I prefer to have multiple people on my caregiving team - it's easier to fill-in if someone goes on vacation or is out sick. And, I think I would get bored with having just one person here all the time. I have not looked into assisted living or nursing facilities for me - I tend to agree with others who stated in some forum posts most facilities could not handle an ALS patient in the later stages. As my caregiving needs increase, I could get more hours from my current team.

I think quality of life versus quantity of life is a particularly important issue for PALS living alone, and is a subject that the PALS should consider and discuss with family and/or others close to the PALS. There are several discussions on these forums regarding end of life issues that provide lots of food for thought…
I’m also very sorry to hear about your Dad. Both your Dad and Fusia have arm/hand issues, and Fusia mentioned her walker is getting harder to use because it’s getting harder to hang on to. I’ve noticed several pALS with use of their legs but no arm or hand strength use the stand up walker that cradles your arms, so that you don’t use them for gripping.

There are several different brands, so you might want to look into those. Best, Kevin
I'm very sorry to hear about your dad. It sounds like step one is finding housing without stairs. I agree that a second bedroom is a good idea if his preference will be in-home caregiving, as well as to have out-of-town visitors.

Starting with an important question: Is he in a location where he will be able to/has he the resources to access paid caregivers if needed?

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Welcome and I'm also so sorry you and dad are going through this.
Some honest conversations will be in order in the next month or so to find out what his immediate needs are, and what his wishes are for the long term and for things like end of life decisions.
Don't make him try to sort all this right this moment, but let him know you want to help all you can, but that you want to help in a way that gives him control and to advocate for what he wants.
Then be prepared to move through that knowing he may make choices you don't agree with.
Somewhere in all this, if you are open and he is honest, you will find ways to make it work.

I did not agree with all my husbands decisions, but it was his body and his disease and I made it work the way he wanted.

I wish we had a crystal ball, or answers that work for all, but instead we can walk with you and be there as you sort this out with him.
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