adapting a bathroom

Jimi

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Regarding the core muscles and sitting upright. I have no core muscles at all. I am lucky I guess, that when my butt is in the right spot on the shower chair that I have just enough angle that I will not fall forward. There is a seat belt but I have never used it. I'm 5'9", 150#. Our bathroom isn't very big. But you can tilt it when sponge bathing. Then go back to upright to maneuver back to the bedroom/lift.
 

ReginaS

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I contacted the Gleason foundation and they asked me to measure my PALS and the shower we had. They told me exactly what to measure and how. Then they designed a reclinable "shower buddy" with foot rand arm ests for my PALS and the shower/toilet. It worked really well. They sent it to us and it was completely free. I would really recommend them. They use some kind of software package to make sure the shower chair will fit the space that you have available.
 

GXTrex

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Regina,

That is great they helped you like that. How far along is your PALS? Mine doesn't need bathroom modifications yet but i am thinking ahead.
 

Fusia

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This would be a stretch for many people redoing a bathroom, but I put in a heated floor along with the curbless shower. I am so glad that I did – not only does it make it much more comfortable for me while I can still stand, but it makes it comfortable for my caregivers when they help me shower. It does add some expense, but the systems available these days are efficient, easy to install, and cost-effective.
 

ARCG

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We used the shower buddy throughout, (no tilt). Ours came with belts, etc. that we could use if my pals core strength left, but he was able to sit upright all through out, leaning back would have been a problem with his breathing, anyway. towards the end, so the tilt would have been of no use to us. He used it up to one week before he passed away. It was great for his quality of life. Whoever engineered it did a wonderful job, we aLao used it as a commode chair over the toilet and was great for haircuts too. We did not have to remodel the bathroom. Really cut down on the transfers and very easy to maneuver, He loved his showers. We had a bidet in the toilet as well, highly recommend that, he loved it and said, why didn’t we get this years ago?
 

nona

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@ARCG , did the Shower Buddy commode work with the bidet?
 

ReginaS

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@GXTrex my PALS died in June 2019. 16 months after he received a diagnosis and he was diagnosed quite quickly.

It really depends on what areas in the body are affected most by ALS progression. For us for example we needed a reclining shower chair with head, arm and leg rests. Tom had no strength left in his back and neck. He was most comfortable in a reclined position. To get him into the shower he had to be upright for a short time but once that transfer was done there was more room and I could tilt the back. His breathing was maybe his strongest. His head could not sit upright and it was too uncomfortable not be reclined.
We used that chair until maybe the last 2 weeks when the breathing had become and issue too and it was hard to be upright enough for breathing and find ways to support the neck. The end is a blurr because there was so little that could be done to keep him comfortable. He had opted for no feeding tube.

For the time when he could not shower standing up or sitting by himself we used the shower chair daily and the warm showers were a great comfort. Possibly one of the greatest when he had lost many of his abilitites.
The CA company that the Gleason foundation used was Nuprodx. I was impressed by their customer service and how flexible they were putting chairs together so that they would work for him and in our bathroom that was built in the 70s... it was similar to a wheelchair fitting.

Our shower had a lip and glass walls. We took the glass wall out so that it was easier to get in. Ours was a "tub-slider" even though we used it in the shower.
 

GXTrex

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@ReginaS I am sorry to hear that I completely missed that he had passed.

I have looked into standard reclining shower chairs online but they are way too big to fit into our small bathroom. I currently have a small rolling commode from amazon that I think would fit and we might order when the time is right (but this wont work if my PALS cannot sit up or hold his head up in the future) at which point I was thinking just a sponge bath or bed bath would be safest as well as a bed pan although this is not ideal.

Unfortunately we do not have a shower stall, it is a bathtub/shower combo. I spoke to the ALS association here and we could convert it into a roll-in but there still would be limited space to fit and maneuver the large reclining shower chair.

He didnt need a feeding tube? Did he have NIV or a trach and if so did you shower him with it attached?

Thanks so much for your help
 

Nikki J

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gXTrex you can always check someone’s profile and see their status. If you look under their user name at the left of their post you can see that and also diagnosis date
 

GXTrex

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@Nikki J

Yes I know. For some reason when I responded I did not look at that. I am sorry
 

ReginaS

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It's really not a problem. We all know that ALS is a fatal disease though I sure hope that all the present research will soon help at least some people. And in the meantime we all have some living to do :) and hopefully we do it well. I sure love the honesty in this forum. Thanks to all who maintain it.

The company that I mentioned above has different sizes /width for chairs. We also thought that whatever was on the market was too big for either one of the 2 bathrooms that are on the 1st floor. Tom fit into a smaller chair. I only mentioned the Gleason foundation bc with their help we got a system that really worked for us and we also had done a LOT of research and had a representative from the shower buddy company here and nothing that we knew of worked without removing a toilet or a whole bath tub or a full remodel of the bathroom. Tom's ALS progressed so quickly that he did not want the commotions of any renovation going on in the house.

There are many people who do sponge baths and it works just fine for them.

Tom chose not to have a feeding tube. Whether you need one or not is ultimately up the person who is or isn't getting one and their wish how to come to the end of their lives. He did not have NIV or trach. He let his body do what it did and eventually his heart and breathing stopped.

The thirst that he experienced in a few of his last days I seriously do not wish on anybody. Anybody can always PM me if they want to. He was very brave and gracious. It was a time of my and our lives that I will never forget and I am at peace with it.
 

jonico

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Rich, You've received some great advice from folks here. I wasn't familiar with the Shower Buddy. I'm impressed. That certainly looks like the ideal option for PALS with a tub. If you do go with a roll in shower, I recommend at least checking out the Rifton HTS (adult version). I've attached a picture of my wife's well worn chair here. We received it as a 'loaner' from our ALS Center. My guess is that it might be more comfortable than the Shower Buddy, but not sure. We used it for between four and five years, from when my wife first started having challenges getting up from the toilet up to the day she passed away.

One key feature we liked/required was that the back of the chair tilted up, in addition to tilting back. We did a stand and pivot and that was crucial to bringing her to a standing position. It also helped for setting her down in the chair. Once seated, we'd tilt her back to a more level position. Even for folks who will eventually hoyer, that tilt feature should come in very handy pre-hoyer. And then you can hoyer into it just like with the Shower Buddy.

We found a pretty thin, U-shaped, padded fabric seat cushion that was easier on her bottom than the plastic. My wife went to the bathroom several times a day in the chair, right in her room. We could take the head rest off easily to cut her hair. We rolled her into the shower for actual showers, setting her ventilator on the toilet and being vigilant keeping water away from the trach area.

Like Fusia, I recommend a heated floor if you can pull it off...no biggie if not.

All the best...Jon
 

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richdees23

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thanks, jon! and thank you everyone for all the advise and info! all of your suggestions have made this process so much less arduous than i imagined it would be. this community is by far my most valued resource and support group i've found on this journey. i can't thank you all enough!
 

lgelb

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Just a note that a bedpan is not the only option for someone who loses neck and/or core strength. Larry toileted in the Hoyer wearing a cervical collcar [slings are available with and without head support, and freestanding head supports can also be looped to the lift cradle separately] over a bucket and used a urinal otherwise, in bed, sling [if already there], or wheelchair. We never used a bedpan.
 
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