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Toilet frame

Sunshine2*

Registered User
May 16, 2019
97
Hello, Just wondering if anyone has any advice, to try and convince husband to keep the toilet frame around the toilet? I have just fitted a third toilet seat and cover in the space of three months. He has mobility problems with his MS and MS Dementia and just thuds down on the seat, slowly breaking it and reckons the hot radiator is there to pull up on? The toilet frame has handles and is there to assist, however, he has moved it away from the toilet numerous times today. He has an indwelling catheter that I empty, and usually has an explosion in the toilet, which again I have to clean. He gets very angry and shouty, when I try to explain...
Thank you for any advice.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,858
Nottinghamshire
Oh dear @Sunshine2* I had the same trouble with my dad. He would move the toilet frame and put in in the hall. I just kept quietly putting it back and eventually he got used to it. Or perhaps he forgot that it didn’t used to be there.

He used to use the shower screen handle to pull himself up.

Perhaps if you told him you needed it instead of him he’d be willing to leave it there.
 

Pacucho

Registered User
Dec 20, 2009
546
Wembley, Middlesex
Sorry to read about the problems you are experiencing. I wonder whether a raised toilet seat may help, which may naturally stop your husband from "dropping down" on the seat.
Hope this helps,
Paco
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and thank you both for your helpful advice. We are both in our late fifties, but I have told him today that I’m fine using it and it is so helpful to push up with the useful handles, and strictly speaking, it is there to assist, just like the second stair rail and the grab rails at the top of the stairs! It took years before he would agree to those. I have looked at raised toilet seats before and hopefully, in due course, with a little persuasion, he may agree to one. The problem being, he changes his mind from one minute to the next and won’t take helpful advice. Thank you.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello again, Toilet frame still in situ. He dragged himself upstairs very slowly and instantly started to pull the toilet frame away, despite me trying to hold onto it. Shouting I should show him some respect and that he has an opinion too. I’ve looked after him for 30 years, at the age of 27, starting with his Aplastic Anaemia, where he could barely lift his head off the pillow and I had to attend to all his toileting upstairs, as he couldn’t get downstairs to the bathroom, despite just having had major surgery myself. Then it was a brain haemorrhage, epilepsy (major ones rendering him unconscious), Multiple Sclerosis, with all the falls and not willing to use a stick and using my shoulder to hold onto, until it gave way. Eventually, he had sticks, until he didn’t have the strength to hold them and now it’s an indoor Zimmer and I push him in a wheelchair outdoors. I do all personal care; showers, indwelling catheter, bowel accident clean-ups and arrange everything. He has optic neuritis, nystagmus and has had MS Dementia for around 8 years. I now have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine and have to lift his legs into bed, where he has muscle spasms all night and snores and makes choking noises. He won’t have a recommended bed. He is so stroppy. Never in a million years did I envisage a life like this... He always used to say to me, “Anyone who helps their wife is a ‘Norris’ and that he doesn’t do sympathy!” I told him helping is caring. He reckons I should help him because I’m his wife! I feel like I’m just wasting my time trying to get him to see sense. He always thought he was always right! At this rate, I think he will outlive me!
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
Hello and thank you both for your helpful advice. We are both in our late fifties, but I have told him today that I’m fine using it and it is so helpful to push up with the useful handles, and strictly speaking, it is there to assist, just like the second stair rail and the grab rails at the top of the stairs! It took years before he would agree to those. I have looked at raised toilet seats before and hopefully, in due course, with a little persuasion, he may agree to one. The problem being, he changes his mind from one minute to the next and won’t take helpful advice. Thank you.
It sounds like he has fluctuating capacity.Can you not get carers in to give you a hand? It might help you on the physical side as you already have some physical problems.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello. Thank you all for your helpful advice. After putting the toilet frame back about a dozen times, it is now relegated to the landing! Last night, he managed to slip off the toilet and was pulling up on the washbasin and the side of the bath. This was at 10.30pm. His legs gave way on the landing and he was flat on his tummy. Wouldn’t listen to any advice for an hour, eventually I managed to get him back in bed by 1am and he was soon snoring and kicking away. Woken abruptly at 4.20am with him thudding the bed and trying to get up for a “wee” , had to literally put the light on and show him his indwelling catheter night bag, filling up well. Hands washed, lights off and very light sleep for yet another night! Can’t ever reason with him or get him to understand useful, helpful advice and equipment. Obviously, he’d tired himself out, by not having the toilet frame in situ, slipping to the floor and further weakness on the landing. In so much pain today with my Osteoarthritis and Cervical Spondylosis in my neck and spine...
 

Weasell

Registered User
Oct 21, 2019
680
Can you get a OT referral from the GP ( for them to visit the house.)
The drop down support rail they fitted free of charge is simply fabulous.
Also they may be able to think of other things to make life easier, example do you own a slide sheet?
 

Sunshine2*

Registered User
May 16, 2019
97
Can you get a OT referral from the GP ( for them to visit the house.)
The drop down support rail they fitted free of charge is simply fabulous.
Also they may be able to think of other things to make life easier, example do you own a slide sheet?
Hello and thank you for your reply. Yes, we’ve had various O.T. visits, but he always says no, to all their suggestions. The toilet frame is very neat and would be ideal for him to rest his arms on , whilst I dry his feet etc. after a shower (I put a clean towel over the toilet seat cover). He complains of the radiator being too hot to hold onto. He wouldn’t even have a stair-lift when it was suggested years ago. He has always thought he is right with regards to everything!
 

Weasell

Registered User
Oct 21, 2019
680
Ok final ideas!
i would remove the toilet frame for a week, so it looked like a victory.
I would ‘ put my back out’ so that I needed the toilet frame, as the injury would mean I struggled to stand after using the toilet.
Then re intruduce it for ‘me’.
Failing that and as a final resort I would spray paint the frame red. I have read some research about dementia patients responding to the colour red. If everything else had failed what I could possibly lose?
 

Dimpsy

Registered User
Sep 2, 2019
1,518
My mum had problems sitting and then getting back up. We bought a raised loo seat with arms to help her up, that clips onto the toilet - you just have to remove the existing seat.
It has worked really well, is easy to clean and very stable. I think because it isn't a frame with legs that can wobble and move, it's discreet and not noticeably an aid.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and thank you all for your very helpful advice. I will look into all the options, with a view to moving forward. Thank you.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello everyone and hope you are doing as well as can be expected.
A very difficult weekend, with four falls, despite having a Zimmer frame (his legs just give way) and difficulty in trying to get him to listen to the advice to best get him on his feet. The fourth fall happened Sunday morning, he was asleep, so I went for a walk around the block and picked up the newspaper. Home, washed hands, put radio and kettle on and started breakfast, when I heard continuous loud thudding on the front lounge ceiling. Went upstairs and he’s shouting and swearing at me, as he’s laid on the bedroom floor, the smell was awful and he’d had a bowel accident. It took 45mins to get him on all-fours (with a push from me), as he doesn’t have the strength. Left knee up and incidentally the lower handled toilet frame was used to help him up. Masses of poo in his pyjama bottoms and all over his bottom, leg bag and straps, legs and feet. Cleaned him with wet wipes and over to shower, dried him, leg bag change, nails cut, clean clothes and he’s as good as new. However, I’m in lots of pain in my back, basically everywhere, with the Cervical Spondylosis in my neck and spine and other conditions. I can deal with his disability from his MS and MS Dementia, but it’s the barrage of aggressive behaviour I can’t deal with, when all I’m doing is constantly caring for him (ill for 30 years and counting). He needs help, even with the TV remote control. I feel like I’m at the end of the road and can’t meet his needs anymore and I’ll be 60 next year...
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
You n
Hello everyone and hope you are doing as well as can be expected.
A very difficult weekend, with four falls, despite having a Zimmer frame (his legs just give way) and difficulty in trying to get him to listen to the advice to best get him on his feet. The fourth fall happened Sunday morning, he was asleep, so I went for a walk around the block and picked up the newspaper. Home, washed hands, put radio and kettle on and started breakfast, when I heard continuous loud thudding on the front lounge ceiling. Went upstairs and he’s shouting and swearing at me, as he’s laid on the bedroom floor, the smell was awful and he’d had a bowel accident. It took 45mins to get him on all-fours (with a push from me), as he doesn’t have the strength. Left knee up and incidentally the lower handled toilet frame was used to help him up. Masses of poo in his pyjama bottoms and all over his bottom, leg bag and straps, legs and feet. Cleaned him with wet wipes and over to shower, dried him, leg bag change, nails cut, clean clothes and he’s as good as new. However, I’m in lots of pain in my back, basically everywhere, with the Cervical Spondylosis in my neck and spine and other conditions. I can deal with his disability from his MS and MS Dementia, but it’s the barrage of aggressive behaviour I can’t deal with, when all I’m doing is constantly caring for him (ill for 30 years and counting). He needs help, even with the TV remote control. I feel like I’m at the end of the road and can’t meet his needs anymore and I’ll be 60 next year...
You need to phone SS for an emergency assessment as say you can do no more.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,310
Yorkshire
Hi @Sunshine2*
Please call the emergency number for Adult Services on your Local Authority website and tell them that your health and welfare are now at risk and if you are injured you will not be able to care for your husband

I'm really concerned about the falls not just for your husband, for you... one unfortunate accident and you may do major damage... sorry, not wanting to scare you... now is the time to see to needs which override wants and don't wants
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,858
Nottinghamshire
Hello @Sunshine2*

I agree with @Shedrech. I’m generally healthy and fit but when my dad’s mobility decreased it damaged my knee so much as I had to support him and lift him that I ended up on crutches. Thankfully I’m fully recovered now but it made it impossible to support my dad without outside carers. I really don’t know how you manage
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and I hope you are all doing ok. Thank you all for your very kind and helpful advice. I always feel better when I message DTP, so very helpful. I called our GP today and left details with regards to what’s happened over the last few days. Obviously, I can’t look at care homes for future care needs. Thank you again.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and I hope you are all doing ok. Thank you all for your very kind and helpful advice. I always feel better when I message DTP, so very helpful. I called our GP today and left details with regards to what’s happened over the last few days. Obviously, I can’t look at care homes for future care needs. Thank you again.
Hello @Sunshine2*

I agree with @Shedrech. I’m generally healthy and fit but when my dad’s mobility decreased it damaged my knee so much as I had to support him and lift him that I ended up on crutches. Thankfully I’m fully recovered now but it made it impossible to support my dad without outside carers. I really don’t know how you manage
Hello to everyone and hope you are all doing as well as can be expected. My husband has had extreme frequent weakness in his legs, arms, hands and back for a long time, due to many conditions including Multiple Sclerosis, a mini-stroke and MS Dementia, all illnesses for 30 years. The last fortnight has been awful, his legs just giving way, whilst using his Zimmer and having to hold him up to clean him after poo accidents before showering him. I took a water sample in last Tuesday and he’s on the fourth day of antibiotics (he’s had an indwelling catheter for many years, which has helped enormously). Last night his legs gave way at 9.30pm and he landed on his back in the kitchen and despite prompting and helping him, I couldn’t manage to get him onto the sofa, so I wrapped him up at 2am, left the hallway light on, as I’d already been up for 20 hours caring for him. At 3.45am I heard a lot of shouting and found him without all the blankets on him, in the foetal position trapped between the wall and the side of his big chair. He tried to pull himself up onto the chair with help from me, without success and finally realised he needed to sleep. Covered him up on the floor until 8am. Eventually, at 12 noon I had no choice but to lift him onto sofa, he is 6ft tall, with a stiff back and arms and legs that have to be lifted. I left him to sleep whilst I cleaned the bathroom after I’d given him his breakfast, meds and coffee in a lidded beaker. It is difficult emptying his leg bag whilst he is laid on the floor, but I managed it. I’m in a lot of pain today, with my Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine and no proper sleep. I have made the decision that I can’t meet his needs anymore nor can I continue lifting him. He also gets very angry and shouts. I have done my caring role for 30 years, previously worked and helped him for 8 years in other aspects of his life, prior to his many illnesses. Will be looking at care homes in the future, as I can’t push him in his wheelchair anymore and I am worn out. Thanks for listening.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,310
Yorkshire
@Sunshine2* that's heartbreaking
the 2 of you cannot continue this way
if your husband falls again call for paramedics
please contact the emergency number on the website for your Local Authority Adult Services and tell them what you have written here ... you are both vulnerable adults at risk of harm through injury if you try to lift your husband and both fall