In your humble opinion

[Firefly]

The ALS organization came out to my house and determine d my bathroom wasn't conducive for a wheelchair and gave
me the name and number of a contractor.

I know everyone's disease progresses differently and
maybe I'm still in some kind of denial. I KNOW I'm still in shock. There hasn't been one day go by for a long time where I haven't cried.

Right now, I'm walking pretty good. I take 30 minutes walks daily. It's mostly bulbar symptoms and my right hand and
arm has lost some strength. I can still shower, hold a coffee cup, drive etc.

My question is whether or not it's too soon or necessary to remodel a bathroom. What if it never gets to that point? (I have a feeling it will be a respiratory issue for me).

It is costly, time consuming and stressful to remodel.

This is all still so new to me. I was just diagnosed 12-29-15, with symptoms beginning in July 2015. Maybe I'm being naive or maybe remodeling will make it more real, and I don't want to face that.

I'm just wondering if maybe I could get some of your sage advice.

I've read so many posts and and amazed at how educated you all are about this disease, not to mention, compassionate, warm and kind.

I come to this forum at the end of my day to feel that connection I can't get with anyone else who doesn't have this dreaded disease. Even if it's a "cyber" connection. :-?

Thank you all.

 

[gooseberry]

Well, I would say to do it while you feel pretty well. Make pleasing, functional changes and choices. It was very stressful for us because they ruipped out floors and gutted our bathroom. If you use g....e try ada bathrooms and terms like that. See what features you like the look of, and is functional. A few we either have or are nice...

A wide enough shower so you can have a caeegiver help you. It should have a handheld shower head. A bidet is nice to assist with toileting. A roll under sink, heat lamp, non slip/patio tile are all good choices

 

[Atsugi]

In the back of your mind, you're probably thinking: "If it's stressful to remodel today, it will be much more stressful to remodel after my symptoms get worse." At least, I think so.

Whether you need it or not, it's worse to need it and not have it.

Everybody's timeline is different. My Krissy had an incredibly rapid progression. That taught me that you don't want to be unprepared. Get ready before you need to get ready.

Good luck.

 

[affected]

What I've seen here is that it takes months to get this all going from the time of decision. This is why anticipatory planning is so important - avoiding crisis.

Having said this, finances are a big part of things too.

My Chris was also rapid progression, I doubt we could have had a major remodel done in time. I had our bathroom looked at and it would have been major, we have had no financial help to do it and did not have the finances to afford it.

We opted for a very low cost option of a portable shower base we could roll the shower chair over. Since he was only showered this way for maybe 3 months or a little less before he passed, it turned out the right choice for us.

But if you are going to remodel, I would say, get on it now while you don't need it, so you have it in place for when you do.

 

[lgelb]

It comes down, Firefly, to how important wheelchair access to the bathroom is. For example, is there room for a shower chair that could go over the toilet? Then if/when the time comes that you require fully assisted transfers, you could transfer to that chair via a lift in another room and then be rolled into the bathroom. As Tillie says, there are portable shower options also, or we purchased a ShowerBuddy for our non-roll-in shower. It will also go over some toilets. We could not remodel since we rent, but even if we had owned a home, I'm not sure we would have. It's a tradeoff only you can make.

Best,
Laurie

 

[Firefly]

Thank you all so very much for taking the time to reply.
I really appreciate it.

 

[Buckhorn]

Hi Firefly. My husband was diagnosed just a few weeks before you (limb onset ALS) and we (mostly me ..... husband does not bring up the subject) are facing the same decisions that you are facing. When I mention the adaptive changes we need to have done, he does reply that he knows it has to be done. I am guessing that he feels if everything goes on as "normal" he won't have to have the visual reminders to hit him in the face. I have not had a home assessment done yet. Most things in our home can be adapted for access, but the bathroom is going to take some creativity. I have actually looked at the portable shower bases that Tillie mentions. I already know I will need the bathroom door hinged to open outward, or even removed. Inside the bathroom, I don't know if there is any equipment that will pass thru the narrow opening between the bathtub and shower stall, but will learn this soon. This is a mental "work in progress", and I have many questions to put to the ALS clinic personnel at our next visit. Not sure if it helps you to hear that this is a common stuggle for many PALS/CALS ..... You have already learned that the ALS forum is a great resource to "talk" things thru with others and gain advice from very knowledgeable and helpful people.

 

[Nuts]

Firefly, on top of the other cruelties is our inaibility to judge time on this journey. You've already received some great advice. I'd also ask how important is it to you to use your bathroom, as opposed to other workarounds? We've had families here that used a lift and a bucket on the bed or PWC seat, and bedbaths or portable shower are also options. For my husband, the bathroom was a huge issue. He still starts every day with a shower, and he insists now that when he can't have a shower he doesn't want anyone visiting him. I suspect more things will change as time goes on, but my point is that using the bathroom for his hygiene as long as possible is a major thing for him. If it is for you, and if you can afford the remodel, then treat yourself and make life as easy on your caregivers as possible. If it's not such a huge deal, then find workarounds and put the money where it will make you all the happiest.

I have learned that there can't be such a thing as too much room in the bathroom. If you go for it, you need room for the chair to maneuvers and room for two or more caregivers to be in there with you would be wonderful.

And yes, the sooner, the better. Ours was done just in the nick of time

Becky

 

[Statius@]

My wife and I are considering the similar questions—how much and when to modify our home to accommodate the wheelchair(s) I am likely to end up in. We think it likely we’ll need to add an accessible bathroom off the downstairs bedroom I’ll end up using. Our current downstairs bath is too small acc’g to both an ALSA and a VA rep.

We are eligible for VA housing grants and recently had a site visit by someone from the VA who oversees such grants. As we suspected, to access the grant we’d have to widen 6 or 7 doorways (interior and exterior), something that would ruin the architectural integrity of this 1895 farmhouse we’ve spent a couple of decades restoring. I understand the rationale for wider doorways, but wonder if the 30-32 inch openings we have at present won’t work for most wheelchairs (including PWCs), based on the specs I’ve seen. Is this wishful thinking on my part?

We can manage the costs of the bathroom and other things like ramps without the VA grant, but if widening doors is inevitable I’d prefer to know sooner than later.

 

[4tloml]

We start our bathroom remodel on Monday in the home we just purchased and feel like it's just in the nick of time. For now we're still in the home we've been in for 26 years with no downstairs bedroom or bathroom. It took a long time to make the decision whether to remodel or move into a single level--part of the delay was denial about progression. The remodel in this home would've had to be quite extensive and costly to get any privacy and would've really chopped up the home esthetically. So we opted to purchase a single-level, much smaller home where we both would age in place. It closed Jan. 25th.

Before it closed we had already figured out what we wanted and begun interviewing contractors, but it has taken this long to just get the project started. (And in some areas it takes even longer to get on a good contractor's schedule.) We aren't moving into the home until it's complete because I don't want my PALS breathing in all the construction dust and it's faster/easier if they don't have to work around us.

But, we truly should have started sooner. Two nights ago I had to call my son in to help get my PALS off the toilet. He still goes upstairs at night and down in the morning and has a walker upstairs (that won't fit all the way into the water closet). But once he'd been on the toilet a few minutes at night without his Trilogy, his oxygen dropped, he was very weak, sweating profusely and he couldn't get onto his feet. We don't have a lift yet (and there wouldn't be room anyway), so it took the two of us to get him back to bed. We needed that new space and equipment then, not in 3-4 weeks when it's due to be finished!

You'll find other posts here warning not to get behind the 8 ball. Please take heed. I've tried to honor my husband's choices, but as of this week, I'm feeling like we're behind the ball. If you are going to do the remodel, please get going on it long before you need it. If not, please make sure you have the equipment available early (bedside commode, portable shower). It is frightening and stressful when you need it and it's not there. And the need can sneak up on you in a moment.

 

[Diane H]

Statius, 30 and 32 inch doors will be fine as long as the doorway is a straight drive through. Remember that offset hinges will add 2 inches to doorways that have doors. Where you run into trouble is if the door is off a hallway. Those turns require a 36 inch door unless the hallway is wider than most. The spec sheets on wheelchairs don't include the leg and footrests so the length is more than the specs say! Same with the width. Armrests and joysticks add to the width of the chair so a chair is wider than the frame size given in the specs. So, get a big cardboard box, open it out flat and tape pieces together to get a piece that is approximately 45 inches long and 26 wide. That is the actual general size of a power wheelchair-- unless you are going to need an extra wide chair. Lay the card board on the floor and "drive" it around the house to see if the doorways and hallways work.

As for the bathroom, the space hog (and can be a plumbing hassle) is adding a roll in shower. An accessible shower is nice but not necessary. You can be clean using a wonderful invention called a wash cloth. More important is a roll under sink for shampooing, tooth brushing, and upper body washing. If a power wheelchair simply won't fit into the bathroom, a really helpful modification is to open the doorway to install a pair of wide bifold doors. That gives plenty of space though privacy may be issue if you have many people in the house. An overhead lift is another consideration in the bathroom. A Hoyer lift is about 40 X 40 when in use so is seldom useful in a standard much less a small bathroom.
Also, check the wiring and circuits to be sure the bedroom can handle adding equipment; electric hospital bed, BiPAP, suction machine, lift, call system, and outlets to recharge every battery operated thing including the wheelchair. Add lights, TV equipment and addons, electric blankets and whatever else, and you need a good power supply and and outlets/ power strips.

 

[hjlindley]

I think it's important to stay ahead of the disease. A lot of the changes we are forced to make are easier to do before the actual fact occurs. Good luck!

 

[Mlock]

Hi, Firefly. I was diagnosed in December, 2015 also. Mine was limb onset but, like you, I think that the breathing will get me. I have an older home and both bathrooms were small. I had someone recommended by the ALS Asdociation come out to look at the larger bathroom. Because of how this disease progresses, I decided to go ahead and have it remodeled. I will have a role In shower, a toilet with a bidet seat and an ADA compliant sink. Also new tile and painting and they had to knock out a closet. They are almost through and it has taken about 3 weeks. I will say that the workers are awesome about cleaning up each day and about making sure I have room to move around so there has been minimal diruption. I think I would insist on that. There is some dust but not horrible. I think you might want to do it soon if you can afford it. Also, I hope that when my kids inherit the house, a brand new bathroom will help with sale. Wendy

 

[KatB]

I have heard there are remodel grants available through ALS Assoc.. Please check all available resources, especially if funds are tight. This disease only gets more expensive as we go. I hadn't planned on loosing income but one yr in, just after diagnosis I realized I could no longer do my job effectively. It was my passion, my own business.......now, ugh! Take advantage of all the help you get ! What a blessing this forum has been to me.

 

[gooseberry]

While you may be able to get by with a 30 or 32 inch door, if the va is involved, 36 inch doorways are not negotiable. They will only let you remodel using the jousing grants if you have access to the area. We were told,For access it must be the 36 inch door.