STUBBORN AS A MULE

We, he decided to take a shower in his new shower chair. Turned it in tub some how, had to take it out and turn it to what I think was the right way. Bathroom got soaked, couldn't close the curtain. That was the start. When he got out, i dried him off and hopped in to take a shower myself. Of course in the middle I heard a crash, Yup, he fell trying to put his jeans back on against his back toward the wall. Told him to sit there until I got out and dried myself off. He listened but was trying to get himself up and couldn't of course. I told him to turn on his knees, the one thing someone told us to do and then put his walker in front of him to hold on to and pull himself up. Fortunately it worked but he now how a nice red mark on the middle of his back. He s going to hurt tomorrow. GRRRR

47 Replies

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  • That is rough isn't it? Well at least he didn't get stuck in the tub. Unfortunately they simply cannot remember what to do or not todo most of the time because of the brain disease. It is so sad and hard to deal with.

  • He got a new shower chair today but he turned it somehow and I had to try to turn it the right way. Of course the bathroom got soaked, couldn't close the curtain. Neat chair but he doesn't now how to use it. It extends over the tub and there is is a lever you push and it slides into the tub. He is getting harder to deal with., memory not good and he is very stubborn.

  • I'd say welcome to my world, but you are already in it! Bruce has more raspberries than a well bloomin' bush! My kids are thinking how good it would be if we moved into a retirement village that helps with ada needs. our own apt with the necessities and conveniences such as emergency care etc. Gaud I didn't think I'd be playin shuffle board at 54! But it might be the thing to do. B has few windows left to fall through and he will need a walk in shower .....I have to look at it positively,not just palliatively (whatever I mean by that).

    Anyway Audrey, here we are cleaning up one thing to go and fix another....God love us!

    AVB

  • Unfortunately there will be a time when you say turn on your knees and he won't remember how to do it. There will come a time when he won't be able to even try to get out of the chair. Have you thought about how he will bathe/shower in the future? I'm not saying this to depress you but to prepare you as the day came when my husband could no longer use an ordinary tub/bath. He now has to be hoisted onto a shower chair and pushed under the shower. I know we are fortunate to have had a garage we could convert to a wet room and many folk won't have the space to do what we did but if you don't have room to use a hoist in your bathroom in the future it's better to think about what you will do now rather than leave it until he can't get in the tub at all.

    It's so frustrating how PSP sufferers behave in a stubborn way. It's not them thinking, I'm not going to take any notice of what she said it's more them thinking, of course they can do this and that, as they still feel fit and active. Their brain is telling them one thing but the messages don't get to the rest of their body which is failing. It's frustrating for us but nothing like the frustration they must feel.

    I hope your husband/partner soon gets used to the chair and manages to use it safely for a very long time.

    X

  • Thank you for that NannaB. I'm trying to sell our house now to move I don't know where! You are so right about things getting worse. I found someone at an assisted living place who is trying to help me with paperwork and VA and a social worker.

    Nothing is free here and I am beginning to see I will not be able to take care of him on my own much longer. I also read something about palliative care. Going to check in that.

    A door just has to open soon.

  • Maybe a bath with a convenient piece of equipment I.e. A chair which turns and lowers up and down mechanically (battery operated) would provide less chance of accidents, we used one for three years but eventually I needed a carer to help the transfer from a light wheel chair to the bath chair, this worked for us but as I know everyone is different.

  • like you say everyone is different . like you Bev , I don't like to keep writing about how difficult things are upsetting everyone , worrying about how their own future might be .

    my own husband has been chair bound bed bound and housebound for over two years..

    our bathroom is upstairs , he use a stairlift which I now use , we installed a walk in shower and I had grab rails in all doorways .

    we used it all for a long as we possibly could .

    we now have his bed downstairs m I made room by getting rid of Sideboard and bought a smaller table , we have a downstairs toilet but doorways are not wide enough to get a wheelchair through.

    he has no falls anymore or struggles so neither do I . because he no longer showers but washes in bed chair or on commode. thanks to the ceiling hoists .

    having said that obviously I am still continually struggling mentally and physically . some days more than others .We just get on and so what we have to don't we .

    I have always said I wish both his wheelchair and armchair had an action whereby I could press a button and it would rise or lower, such as the hospital beds . no more bending . everything get heavier as you age .

  • My back is getting worse and my right shoulder as well cabbagecottage.

    i have decided to move to another house. Of course everyone thinks I m crazy but I found moving for me at least, makes me feel better. Right now I am not in the best state of mind, frustrated and oh so tired.

  • You do know there is a reclining chair that also rises up for those who have difficulty getting out of a chair....It actually lifts up and tilts forward....I wish I could show you a picture of it but if you go to 'rising chairs', I'm sure you'll find it.

    AVB

  • The reclining/rising chair comment was for cabbage cottage but sounds like you could use it too, Audrey.

    Audrey, don't feel guilty or whatever wanting to move. YOU are the best person to know what is Best for you and your husband. Like I said elsewhere, my kids are thinking that dad and I should move to a retirement village. Rent out our house, and move to a house that is specific to ADA needs and such.....again I feel way too young but I cannot control these events in my life....I can make them easier when they rear their nasty head...You can too and must. And if moving is the thing needed, then move on sister, move on!

    Hope you all We all have a good day ...whichever day it is!

    AVB

  • yEs we have one already all singing and dancing. It's very good one th back move independently to the feet as well .

    wHat I really meant was one that hydraulically raised the whole Chair higher so that I didn't have bend . it Would be ideal for him to watch the TV as well . At the moment his head is so dropped forward he cannot see it .

  • Hmm...It sounds like you know where to look.... CC, necessity is mother of invention, maybe you should invent what you need....take onto Shark Tank (an American show about Billionaires helping the small time inventor/entrepreneur get his product out to the masses) and make millions reinventing the chair!

    AVB

  • Now wouldn't that be nice cc :)

  • Yep, I too recall the very day I finally accepted that my mum needed me to do absolutely everything for her, and could no longer risk her attempting to move, without me there to keep her upright...

  • Auddonz I can only wish you well with the shower chair and tub but while he is still mobile and able to stand it may be worth changing from tub to a walk in shower cubical or the whole hog and convert to a wet room. So you both can get used to it and get the benefit, yes I miss a long soak but so much simpler with wet room shower.

    Good luck and best wishes Tim

  • Hi Audrey, I think the others are right! Is it possible for you to convert your bathroom into a wet room? We had ours done about six months ago. Although, it was probably a year too late! S would have been able to be independent, a lot longer if we had. Because the old bathroom was not fit for purpose! It did have a walk in shower, but no where to put grab rails, so he lost all confidence, long before he should have. He hasn't been able to get in and out of the bath, for years now. Said it was because of his knees, but we all know that story!

    Certainly, you should be putting grab rails all around the bathroom. In ours, I have grab rails, everywhere, my daughter says S is like a monkey, swinging from one rail to the next! If you choose the right sort, it doesn't look wrong. I have big chunky chrome ones, they look part of the decor, rather than a disabled, hospital bathroom. Also, I have a floor to ceiling one, which is incredibly useful.

    As for your hubby being as stubborn as a mule, remember there is one part of him that will never change. He is MALE!!!!

    Lots of love

    Heady

  • Hi Heady, I have grab rails in there already and am putting in 2 more. The bathroom got soaked since I couldn't get the shower head in the right direction. Its one that has two heads and I wanted too use just the bottom one and shut off the top but couldn't. To boot after drying him off I jumped into the shower and then heard a crash. He fell trying to put his jeans back on. So there I am sopping wet, telling him to just sit on the floor until I could get out and put something on. He of course was trying to get up but couldn't. Fell on his tush against the wall. I remembered someone had told us the best way to get up and it worked fortunately otherwise I would have called 911, WTH is a wet room? I have now decided to save my sanity and move to another house and start from scratch. Did I ever tell you that moving is very good therapy for me :) I am going through a very tired time, constantly exhausted.

    Love back

    Audrey xoxo

  • Hahaha that's so true about stubborn...remember our husbands are only one vowel different from being a m-U-le!

    Heady, what did/do you do with the floor to ceiling rail?

  • That would be telling!!!!

    Lots of love

    Heady

    (In my dreams!!!)

  • Girl!! !oh i'm conjuring up some dreams!

  • The boring part is, it's in a fairly central part of the bathroom. S can reach it after taking a step from the loo, basin and it's at the entrance of the shower part of the room. Also, gives me something to hang on to, if I feel I need some extra balance, if S is wobbly!

    Lots of love

    Heady

  • To be honest...those are the only dreams I conjured up! Our lives eh? dreams of... stability in the bathroom...hahaha

  • Know the feeling!!! Where did we go wrong?????

    As to the pole taking down the ceiling, hadn't really thought of that. But I suppose, if it's possible, S WILL find a way!!! Think it will be very hard though, being narrow, they will bounce off rather than take it out.

    Watch this space!!!!

    Lots of love

    Heady

  • ;)

  • After my honesty comment I forgot to tell you what a wonderful idea the pole is. I used to wonder if that would be a good thing...But I imagined B falling and ripping the thing right out of the ceiling and/or floor haha

    Back to the Drawing Board,

    AVB

  • Hah

  • Hi remember when times were different and you both said I Do to in sickness and in health...this is the ultimate test..love Rollie

  • Hi, Rollie! How are you doing?

  • Hi I wish Madeline was still here...a selfish thought but this is harder then I ever imagined,thanks for asking,Rollie

  • After all the time you had together before psp and then the total concentration through the years of caring for her, it must feel like you've fallen into space. Hang on, Rollie. I'm glad you are still checking in with us. You know we care about you. Love and peace, Easterncedar

  • Rollie, what are you doing now? I wonder what it's goingt to be like if B goes before me...."am I going to want to do anything? can I use what I've learned to help others...there are a lot of need fro healthcare aids for people such as our own. Will I be incapacitated? relieved , both....

    I know this is a sensitive subject and I certainly don't want to open wounds that are still in process of healing, but what are you doing now?

    Sincerely,

    AVB

  • Hello..I,m TRYING to make some sense of my life ,without many results I must add ! Each day I try to waste time so time will pass,I,ve looked at volunteering at the hospital but have yet to complete any application,I had joined a bereavement group but only attended once,30 people in tears definetly was not medicine for what I feel .My 2 sons and families live 200 and 2500 miles from me,they are great as they still call every night as they have for the past 12 years,even if it,s a lot for them it certainly shows their love and respect,when they were young men I was in doubt they would ever have done that but Madeline with her huge Mother,s heart always said they would come around,as usual Madeline was correct .Nights are long the last 5 years of psp, as you all know, involved very little and odd hours to get a bit of eye shut,on the long run I am terribly glad God gave me the strength to take care of the person who was 99percent of my life ,thank-you for asking and remember your heart is the same girl that initially turned your head,I know what terribly hard work is required and hold you ALL in high esteem,love Rollie

  • Sorry dear...I had not checked your personal info...he was the MAN that turned your head,love,Rollie

  • Thank you for your reply. When B was diagnosed, I was still teaching. I was miserable and finally quit to carry out my vows." In sickness and in health."

    this site has been really healing...keeping me from total emotional catastrophe.....I am glad that you came back to talk to old friends....I think it's safe to say that you too can talk it out here like you did before.....Nothing is certain , but we may be the one who needs your comfort for the same reason you need ours.

    Have a good night,

    AVB

  • Thank-you ,you all are the only ones who really understand,to go to a hosp setting to try and be of help, I think,from what I saw over the last 12 years , some huge egos with little understanding of psp,not for all, but most ,would likely be most frustrating,tomo I will spend 2 hrs or so walking on an empty beach where we walked up to 5 years ago there,I can see Madeline,in my mind , ,much love to you both,Rollie

  • Enjoy the beach...and the memories....hang on to the joy...

    AVB

  • I find since finding all of you and our open discussions that it makes my days much easier. The ones that I sometimes wonder if I will get through.

    Nite,

    Audrey xoxoxo

  • We did have the bath/shower chair that brian sat on and lowered him into the tub but it got to the stage that he was so stiff it was useless. Now we are awaiting to have a wetroom done. Wish we had it done a couple of years ago. Janexx

  • We will see how he likes it. I know my bathroom got flooded since I couldn't get the shower head in the right direction and then I hopped into the shower and heard a crash. He fell trying to put his jeans on before I had a chance to tell him not to put them back on. Fortunately I remembered how to tell him to try to get himself up and it worked. What is a wetroom?

    Audrey xox

  • The only way i can describe it is a large shower with a toilet and hand basin in it. The floor slopes so that all the water just drains away. You have the shower area either screened of or you have curtains round the shower area. So easy regarding water spillage etc. Most of them you can get mobility aids in including hoist and carer. Something that might be needed later on. But as we all have admitted better to get sorted sooner then later. Janexx

  • Convert a garage would do it. But we don't have one. New house to put one in.

    Audrey xoxo

  • Go for IT

  • Find a house with ADA everything...close to medical facilities and NO stairs! I read turn around room in a bathroom should be 60"....thats about 2 meter diameter?

  • We are so close to med facilities now and finding a house as close would be impossible. No stairs, well that also is an issue, one being I like a front porch. This house is gret but nuts as I am I think a change would be good. We will see abirke.

  • hi

    have you tried a perch stool from the OT?has worked wonders for rog getting dressed.

    julie x

  • Never heard of it but it sounds like it would help him out a lot. Thanks for the tip julie.

    Audrey xoxo

  • We had a downstairs toilet and I asked a builder to take a shower-sized chunk off the room next to it , (176 cms by 76cms or 30" by 54")and add it to the toilet. This made the toilet big enough to be made into a wet room. The builders did not charge VAT . I asked the Council for their list of recommended builders as they are used to doing wet rooms for the disabled. (There are grants available for those who are eligible.) I asked the Occupational Therapist if we could have a shower chair too, we leave this in the shower when finished with. Hope this is useful. It certainly made our lives easier.

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