PALS toilet needs

[Tomswife]

Thanks to all. I learned a lot. We must stay in our home, Tom is very attached to it. Have lived here 39 years. The den he is in is only about 10 feet from the bathroom. But you cant get there with a lift. Short hall and then turn into bath is impossible. Its actually very difficult with the manual wheelchair.
The very helpful OT person at our ALS clinic told me to call Compassionate Care ALS. They are in Massachusetts but also serve parts of NJ. The rep at CCALS was very helpful and someone will call in a few days to help us sort out the lift and toilet options.
I am also going to call a rental firm and may rent a lift for a month while waiting for advisors. (If needed).
This is a tricky and confusing disease. From his lift recliner...Tom can stand with some difficulty. Tom can stand with great difficulty. Tom cannot stand without my help pulling him with a strap. And....Tom can stand but cant lift his foot to shuffle. I am describing one single day!

 

[affected]

Yes, when we first started using the hoyer we only used it to get into bed. As things progressed we used it early morning and then later during the evening. These were the times Chris was least steady. As things progressed and he could not hold his head up when standing we slowly used the hoyer more and more. For a long time he could not stand without my assistance, even from the lift recliner.

We just kind of take each day as it comes and adapt as we go. The more we do, the more we learn, and the better at adapting what we learned already we become.

 

[lgelb]

Again, you don't need to take the lift into the bathroom. He can transfer wherever it fits or toilet in another room.

 

[Tomswife]

Affected. Yes. Tom can no longer hold his head up when standing. He can to some extent when in his recliner.

 

[Mary2]

My impression Tomswife is that your husband no longer needs to be in the bathroom. There are ALS patients of many different ages on the Forum but our husbands are in their 70s. I am not sure men in their 70s need to be moved around the house on a hoyer lyft. That is a lot on them and a lot for women our age to do. I am not convinced men in their 70s need showers like a man in his 50s might want. We used a portable commode in the family room, a room my husband really likes. We have spent our resources on caregivers. Until now my husband has still been asking for food and this has been tiring and time consuming. This past week he has moved to tube feedings 3x a day. This is less tiring. I could maybe even reduce the caregiver hours. But we said good bye to the bathroom for my husband over 1.5 years ago and have no regrets.

 

[Jimi]

I haven't had a real shower since 2017. Just sponge bath every four days. No prob ever with skin or itching. I don't smell according to my wife and daughter 😃

 

[Tomswife]

Yes. I agree Mary and Jimi. I am 70 and tore my right rotator cuff 4 years ago, and injuries like that never really heal. My goal is to have the lift and commode by the end of the week.
This week I am also starting with home health aides, Thursday and sunday pt. If we like the agency i will increase the hours.

 

[affected]

Tomswife you have to think about sustainability like this. All well and fine if you just had to look after him a few weeks or months. But preparing for the long haul means pacing and equipment and help.

 

[paulashine]

I wear nightgown bedpan in bed. hoyyer hard. brief or diaper. done it all.

 

[lisa g]

We hear you Jimi. I'm still mobile but use a rollator. There's no holding it anymore when I have to use the bathroom I better get there or else.

 

[affected]

welcome paula - have you really had ALS for 15 years now?
I'm not sure what it means to wear a nightgown bedpan and searching on that with google didn't help. Can you tell us a little more?

 

[KimT]

In the future, I'll get a PureWick system and use incontinence pads in bed. At least men have it easier with #1. #2 is my big worry. Women should not use diapers since it can give them urinary tract infections. I'd wear a diaper out if I had to.

Either gender should plan on how they will do #1 and #2 when they can no longer walk. I have an electric Hoyer lift that I loaned out until I need it. I also have everything ready for a ceiling track lift if I can still afford it.

Money is really the #1 issue concerning what you do. I had enough to do some big modifications in 2017. I have no idea how long my money will last or if my progression will continue this slow.

The unknown is hard to plan for but I've always tried to stay ahead of everything I do. I was one of those crazy college professors who had their syllabi done two semesters in advance.

Jimi, I totally get it.

 

[MupstateNY]

I hope someone will explain "nightgown bedpan" and post an image -- sounds intriguing!