We are in the process of remodeling our bathroom and would appreciate hearing suggestions that would be helpful going forward. John is still mobile but his falls are increasing. To be honest I am expecting the worse, but suspect there is still a portion of time where he can remain relatively independent. I'm having the tub taken out and replacing with a shower area that he could sit and shower, the lip would be roughly 3" so I think (maybe foolishly) that I can help him step over. Do you find bars place by the commode helpful ?
What do you think? Is this a waste of money? A good idea? What obstacles did you encounter - what would or is helpful? Is there possibly something better we should be spending our money on for the future that I simply don't have a clue yet.
I realize that most of you are facing far more serious concerns, but I would sincerely appreciate any and all input.
Hugs, Alice
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Unfortunately there will be a time when John won’t be mobile and able to get into a shower. If you are able to do so, it would be better to have a wet room where you can push John straight in on a commode chair made for showering. Hand rails are good while he is still mobile. It’s awful to think about but the time will come when he is immobile, can’t weight bare so will need hoisting and if you aren’t in a single storey building, can’t get up and down stairs. Some people have lifts installed and others have a bed brought downstairs so then it’s best to try and get a wet room installed on the same level. My husband loved his shower every day and hated bed baths which he had while waiting for a hoist to be delivered. It’s good to have adaptations and equipment in place before you need them as things can change suddenly and it’s easier if you are ready and prepared.
I have always tried to be proactive, but after reading the various posts here, I realize that the one common denominator of this horrendous disease is that the end of the journey is such a sad way to end a vital life. Trying so hard to stay positive but secretly scared beyond words. At the risk of sounding stupid - what is your definition of a "wet room". I think I know but just want to make sure. We are in a one-story home now, so no stairs involved. The hoist is also an excellent idea. Will begin looking into those. Thanks again! Alice
In a wet room there is no shower tray so no lip to manoeuvre over. Even the tiniest step up or over will be too high. The floor will have a slight slope towards the drain so the water drains away and doesn’t flood outside the room.
Reading posts by folk who are further down the line than you, or like me have reached the end, can be very upsetting, I know, but you still have time to make happy memories and do some of those things you hoped to do one day. It’s good to be prepared for the future but don’t wait for it and worry about it. “Life is not about waiting for the storm to pass, it’s about learning to dance in the rain”.
Oh NannaB, such a wise lady. I do keep all my worries inside and we do dance....in and/or out of the rain! This site has made me realize that we should not waste a day.
I agree with NannaB, a wet room set up will be useful much longer then a shower. Make sure it's a hand held shower head, grab bars can be installed where you like them to be, I had 5 in the bathroom dad primarily used, it was a walk-in shower type.
Do make sure you'll have access to the room in the future or your remodel will be for naught.
Hi Alice, in my opinion, having a lip on the shower may end up defeating the usefulness of the conversion as there may come a time when you need to put a wheelchair in there.
There will be Hospital guidelines for a 'disabled' bathroom. It will include non slip floor which includes self draining, curtained, shower access by wheelchair, toilet and retractable arms, washbasin, all with enough space around to take all the necessary extra equipment and probably 2 carers. Hospital standard probably also includes need for shatter proof glass in windows. You also should include grab handles that cannot be pulled off! Door access also needs to be wide enough for wheelchair. Ideally, it also needs to be on the ground floor, along with his bedroom/living space so that he can continue to take part in family life.
Going half measure with a standard shower with lip will mean you have further expense and disruption later, possibly at a time when you will find it much more difficult to do without it if John suddenly declines and it is not ready.
My husband had CBD and his need for disabled facilities at home came inside 48 hours! We had a small shower which he could step in and which contained a stool, but there was no room for me to wash him, especially his back and nether regions, and I also got soaked! Our Dr put him in hospital immediately and we continued downhill from there.
PSP does not progress as quickly, but you need to plan for the most severe event if you want to keep him home as long as possible.
I thought a lot about how to convert our bathroom but did not do so in the end. Now I am thinking of moving house, design of bathroom is important to me as I, too, may need it in old age!
Hope this helps. I know there are other comments already posted. Maybe you can find them if you search the site for bathroom conversion, or disabled bathroom.
Wishing you and John all strength on the journey with PSP.
Thank you Jen - all excellent ideas. Don't know why I didn't think of the guidelines - makes so much sense! Sometimes things are so overwhelming that the obvious just does not strike when it should!
That is absolutely it! The brain is bombarded by questions, what ifs, and problems that it just isn't capable of thinking clearly! Some of us have been there! And made it out again, so there is hope for you!
I agree with Bev a wet room is the best option, don’t have the lip on the shower tray, you will need to push the wheelchair to the shower, we have a grab rail near the shower, George likes to hold onto it when he has a shower. We have also a shower chair that he can be wheeled into the wet room, not slip tiles, we have a Velux window in our wet room, we also live in a bungalow so everything is one level. Yvonne xxxx
Thanks Yvonne - the more I'm reading here, the more I understand that the lip is not a good idea. We still have time to change the plan. I'm slowly realizing that wheeling John into the shower will be the only answer at some point. Makes me cry thinking about that day. Thank you for your help. Alice xo
There was a great string on bathroom design not that long ago - 2 months or so?? I remember Ratcliffe posting about it..(where someone suggested the "Show us Your Wet Rooms bus tour" ha ha! Darn, I can't remember the name of that string but I'll look.
Anne - the "wet room bus tour" made me laugh! Thanks so much for that! Will definitely look for the posts. To think I almost didn't post the question - thought maybe you'd all think it was dumb. How lucky I am to have you all for advise and to lean on.
In fact the string WAS titled "Show Us Your Wet Room lol" by Ratcliffe
If you search bathroom or bathroom remodeling you can see the the thread and some photos as well,we installed a wet room and it's a life saver and shower commode.
Search is under the more tab at the top of the page,right hand side.
We installed a 'wet room' just last year and have found it to be invaluable. Jackie was very insistent that she didn't want it to look too 'hospitalised' and so we managed to get the best of both worlds a bathroom that looked good and yet was suitable for use with a wheelchair.
One of the best things in the design of our bathroom was the use of a sliding entrance door. It wasn't that expensive to install and yet the extra room it provided and the ability to push the door back out of the way was great - I wouldn't have a bathroom without one now.
One small practical thing, often designs concentrate on having space around the sink, toilet etc. We followed this advice and now wish we had placed the sink closer to the toilet. Jackie is unable to stand up herself (she has MSA-C) but is able to maintain some privacy whilst going to the toilet. It would be so much better if she could wash her hands and use the sink whilst sitting on the toilet.
We use suction grab rails which we find adequate and again avoid the 'hospital look'. I do have to check them every time Jax has a shower to ensure they are still firmly in place.
We were advised to have a curtain around the showering area but chose not to as I think they are sometime more trouble than use. At shower times I put on a pair of shorts and paddle in to help. Of course if one has carers, they may have a view on this. A flexible hose shower head as suggested earlier is essential.
One final thing if you are 'splashing out' (!) and getting a complete room refit - we after some discussion decided to fit under floor heating - it is magnificent. The joy of having a warm floor under ones feet after a shower is great. If not.... just hang the bath mat on the radiator first!
Thanks Ian! Interesting you mentioned the door as we just decided at the last minute to put a sliding (pocket door) in place to provide more space. Great minds as they say!
I agree with all comments. Have a flat floor throughout. A small step is bad for your husband and impossible once he needs a shower wheelchair. Put grab rails everywhere. I found them so useful, especially when Steve decided to take a fall, something for me to hold onto as well. Do this bathroom as soon as possible. The distruption will be very hard to cope with if left much longer. Also, it doesn't need to look like a hospital, pretty tiles, modern big chunky chrome grab bars. I had bars that you can pull down into place around the toilet. They worked really well, I could put them up out of the way, if not in use. Or when you need to attend to certain matters! Even now Steve is no longer with me, the bathroom looks perfectly normal and the grap bars part of the design.
Research hoists, but don't put any in place yet. My husband never needed them. Also you won't know which one you will need.
Please don't apologise, these are very serious concerns of yours. A properly designed bathroom, will save you no end of stress.
Keep trying, she coordinates the whole program at U of C and she is very busy, she mentioned you had called when we were in for John’s last infusion, and said she would get back to you soon. They will finish John’s clinical in June, and are recruiting for the next series to begin at that time.
We also took our tub out and put a walk-in shower , the 3 ” lip can create a problem, but I think it is fear that causes the hesitation on my husbands getting I or out. The hand grips are essential and we have at least five of them in all shapes and sizes. John does not have use of his left hand do to the CBD, so it is necessary for me to be in the shower with him to help. I would advise having it large enough for the caregiver to be able to help wash hair etc.
Great news Donna - I actually made it through the phone maze and found Breanna at the U of C!!! PLUS her direct line! Ta-dah! I feel like I should win a prize! Breanna appears to be very nice and easy to work with. She's going to have Dr. Xie call me to see if my John would be fit for the next program. Thank you so much for the information. I will let you how we progress.
Great news Alice, I think you will be happy with the program. Having hope is so important to both of you. My husband has shown some improvement, his eyes have improved enough that he can read again, his facial expression has become normal again, anger and emotional outbursts are no longer an issue and best of all there has been no further progression of the disease since he began the infusions last June. We can live with the disability he has and are very thankful he has not had to go through anymore degradation. He is 83 years old and is happy to be a part of finding a cure for this dreadful disease.
We just remodeled and made an accessible bathroom for my husband. I contacted a person that specifically did remodels to make things either ADA compliant or usable for a disabled person. Try to find someone who does this type of remodeling. It will be a life saver. We did not do a wet room, but did a shower with a collapsible water dam. I am now thinking about putting in a caregiver door to make it easier to help with showering. Good luck.
A lady here locally whose husband is in the end stages of Parkinson's said--the first time she met me!--was that the best thing she ever did was spend $1600 on a lift over the toilet, some kind of a sling to lift the person on and off.
We are in the U.S. My husband has PSP and is now in a care home. We were able to make a roll in shower in our main (guest) bathroom by extending the floor tile sloping toward the drain. We used a Corian sill (about 3/8" thick) which is easy to roll over. We used a barn door style glass with a large sliding door. A handheld shower head is very important too. This worked perfectly for him and our in home caregivers. It also looks nice. A permanent seat will be only temporary because of the difficulty transferring as his illness progresses. I would suggest a shower chair, while he can use it, that can be removed to make more room for a roll-in shower chair when you need that. Or, just use the roll-in chair from the beginning.
I liked this solution better than the wet room idea because I felt like it helped maintain or increase the value of our home. I found that most of the modifications we made i.e.; ramps, handrails, roll-in shower were useful for about a year so it's wise to not overspend if you can help it.
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