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Toilet frame

Sunshine2*

Registered User
May 16, 2019
97
Hello to everyone and hope you are all doing okay.
Just an update. My husband spent 11 nights in hospital and then a Dr. called me to discuss things. I asked about his mobility and he reckoned he was managing to get about with his zimmer with supervision, which seemed to indicate he was back to his baseline. In view of the Coronavirus situation and the fact I had cared for him for thirty years, I decided I would never forgive myself if he were to develop the virus whilst in respite/care home. So I decided it would be best to try him at home first, as he’d already called me 42 times that day and was thinking he was on a ship and was pleading to come home. So I gave him the good news he was waiting for.
I later had a call from another Dr. stating that a “bests interest meeting” would be advisable, as my husband has complex care needs. This would have to be done remotely and in a safe manner. After a long discussion, I decided in view of the virus, I had to bring him home, even though I was advised against it, until a type of meeting had been arranged. I had to give the hospital sight of the Health & Welfare LPA.
He came home, I noticed his leg bag had very dark urine and I kept an eye on it. Through the night he was in pain and no urine output, so the community nurses had to come out to change the indwelling catheter. The old one looked fine. Seems to need a new one every two weeks just lately.
The other night I cooked a lovely roast dinner and asked him three times if he wanted a coffee. He retorted, “Do you ever listen to me? I said no.”
So I made myself one. With that, he got very angry in the face and banged his zimmer all the way to the kitchen. I went after him to ask whatever is the matter? He shouted that “he should bl••dy hit me.”
I told him if he did that, then the police would be carting him off. He disappeared into the lounge and I brought him a coffee.
Despite agreeing to use his zimmer in a correct manner, as I have told him for many years and so have physios and 0.T.’s, he is now leaving it behind his chair and pulling on chair in a right angled position, to get to his seat. He will not take it to the front of the chair to assist him. Doing the same thing in hospital.
4am yesterday morning he was calling out in agony ; no urine output in his leg bag/night bag, so we needed the nurse again. Again, the old two week one was all clean, so his indwelling must have moved inside him. Anyone else have these issues please?
1.51am this morning he’s making loud choking noises, like there’s a load of liquid in his throat area. Told him to put it into the tissue, but he insisted in dragging his night bag to the bathroom. It took him ages to get out the bed. Once back, he’s unable to move the covers and get back into bed, shouted that I’m useless and I never give him any assistance. I literally lift his legs into bed and spend all day and night waiting on him. He cannot do anything for himself. Even the TV remote is beyond his capabilities now.
I can’t sleep, as he’s snoring again.
Hopefully, in the future months ahead I can get him into respite again and as his mobility decreases with his MS and his dementia behaviour gets worse, then the care home decision will have to be made. He is getting so confused all the time now.
Sorry for the long rant, but it “helps to talk.”
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
Hello to everyone and hope you are all doing okay.
Just an update. My husband spent 11 nights in hospital and then a Dr. called me to discuss things. I asked about his mobility and he reckoned he was managing to get about with his zimmer with supervision, which seemed to indicate he was back to his baseline. In view of the Coronavirus situation and the fact I had cared for him for thirty years, I decided I would never forgive myself if he were to develop the virus whilst in respite/care home. So I decided it would be best to try him at home first, as he’d already called me 42 times that day and was thinking he was on a ship and was pleading to come home. So I gave him the good news he was waiting for.
I later had a call from another Dr. stating that a “bests interest meeting” would be advisable, as my husband has complex care needs. This would have to be done remotely and in a safe manner. After a long discussion, I decided in view of the virus, I had to bring him home, even though I was advised against it, until a type of meeting had been arranged. I had to give the hospital sight of the Health & Welfare LPA.
He came home, I noticed his leg bag had very dark urine and I kept an eye on it. Through the night he was in pain and no urine output, so the community nurses had to come out to change the indwelling catheter. The old one looked fine. Seems to need a new one every two weeks just lately.
The other night I cooked a lovely roast dinner and asked him three times if he wanted a coffee. He retorted, “Do you ever listen to me? I said no.”
So I made myself one. With that, he got very angry in the face and banged his zimmer all the way to the kitchen. I went after him to ask whatever is the matter? He shouted that “he should bl••dy hit me.”
I told him if he did that, then the police would be carting him off. He disappeared into the lounge and I brought him a coffee.
Despite agreeing to use his zimmer in a correct manner, as I have told him for many years and so have physios and 0.T.’s, he is now leaving it behind his chair and pulling on chair in a right angled position, to get to his seat. He will not take it to the front of the chair to assist him. Doing the same thing in hospital.
4am yesterday morning he was calling out in agony ; no urine output in his leg bag/night bag, so we needed the nurse again. Again, the old two week one was all clean, so his indwelling must have moved inside him. Anyone else have these issues please?
1.51am this morning he’s making loud choking noises, like there’s a load of liquid in his throat area. Told him to put it into the tissue, but he insisted in dragging his night bag to the bathroom. It took him ages to get out the bed. Once back, he’s unable to move the covers and get back into bed, shouted that I’m useless and I never give him any assistance. I literally lift his legs into bed and spend all day and night waiting on him. He cannot do anything for himself. Even the TV remote is beyond his capabilities now.
I can’t sleep, as he’s snoring again.
Hopefully, in the future months ahead I can get him into respite again and as his mobility decreases with his MS and his dementia behaviour gets worse, then the care home decision will have to be made. He is getting so confused all the time now.
Sorry for the long rant, but it “helps to talk.”
Hi. My dad has these issues with the bag. In the afternoon there is no urine output . My dad has CKD which means his kidney function is declining. He also has the dark urine. Sometimes the dark urine is a sign of dehydration.
Do you keep a record of how much he drinks to how much is his output? That would give an idea on whether he is retaining fluid.
 

Woo2

Registered User
Apr 30, 2019
2,787
South East
Oh @Sunshine2* , what a time you have had , I was wondering how you were doing. You can only lead him to the water you can’t make him drink . I’m sorry it’s so difficult for you at the moment, sending big hugs 🤗
 

Sarasa

Registered User
Apr 13, 2018
1,850
Hi @Sunshine2* , I was wondering how thing were. I totally understand why you feel you needed your husband at home, but I'm afraid he's never going to remember to agree to do things such as use his zimmer frame correctly. Hope you can get some more help, and if you do feel it is all too much call 111 again.
 

canary

Registered User
Feb 25, 2014
13,672
South coast
Will the Best Interest meeting still be going ahead?

There are care homes out there with no coronavirus and the care homes are now being geared up with testing and PPE to prevent spread.
Do please listen to the doctors - they dont give this advice lightly.
I am concerned for you.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and thank you all for your very kind advice.
His urine was only dark when I checked his leg bag immediately on his return from hospital, to me it is usually an indication that there’s a blockage somewhere, as his urine is a lot lighter. Indwelling was replaced next day. When there’s no urine, he’s in pain and I call the nurses to change the indwelling catheter and when the new one is fitted, there is a flood and straight away he fills two bags. His night time bag always has 1 - 1.5 litres of urine in it.
The old catheter is fine when taken out, so just wondering if it moves about inside him and creates the blockage? Seems to need a replacement indwelling every two weeks by the nurse instead of a 12 week change.
Unfortunately, the ‘Best Interests Meeting’ was to have been done, if he’d stayed in hospital longer and I brought him home.
Many a time I wished I’d listened to their advice and to people on DTP, but he’d gone from total body weakness from the neck down to being able to use his Zimmer frame and from the telephone conversations he seemed to be back at his baseline. Obviously, I couldn’t visit him in hospital and this confused him more, resulting in 32-42 calls a day, asking over and over again when he can come home.
I feel like I am a magnet, having to watch his every step. I only did what I thought was best at the time. The Coronavirus stopped the care home decision for now. Will just have to see how it goes. He has never listened to any advice in his life, only believing that he is always correct.
Will be booking him in for respite care in the future, when it’s safe to do so and I’ll probably ignore his continuous phone calls.
I will never pick him up again, as years of doing this and wheelchair pushing him, has given me, I believe, the Osteoarthritis, Carpal Tunnel and the Cervical Spondylosis in my neck and spine. I started helping him when I was 27 and now I’m 58. The GP has said caring for him has aged me, so I will always call for help when his legs give way.
Thank you again.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and I hope you are all doing okay.
I wondered if anyone has any advice regarding dizziness. My husband, as you know has many conditions including being disabled with Multiple Sclerosis and he’s had MS Dementia for a number of years. Yesterday, he said he was feeling very dizzy and unsteady. Thought he may be better after a good night’s sleep.
However, today he’s had two massive thud falls onto the bedroom and landing carpeted flooring. I managed to get him downstairs on his bottom, apart from the last few stairs. He’s currently sat in his comfy chair, but is still complaining of dizziness. I’ve called the G.P. in the hope of a telephone appointment.
Anyone have any advice please?
Thank you.
 

TNJJ

Registered User
May 7, 2019
1,788
cornwall
Sometimes it can also be a side effect from the dementia. Dad has VD and has this . Doctor gave him some pills for it
 

canary

Registered User
Feb 25, 2014
13,672
South coast
It can also be caused by low blood pressure, low blood sugar level, dehydration, inner ear infection, TIA, stress and a load more.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and thank you all for your very helpful advice. I have been very aware of all his movements today and watching and following him everywhere. The Dr. called back and said he would try reducing one of his night time tablets for muscle spasms, which were recently increased by the MS Nurse, as they can sometimes cause dizziness. Will have to see. He’s still feeling dizzy, so it may be a few days before it settles down, although he is struggling more with his mobility, getting up to a standing position is hard and doesn’t seem steady even with the zimmer. Sleeping more during the way and waking with yucky stuff in his mouth that he has to spit into a tissue, this usually happens at night time when he’s doing his choking noises and loud snoring.
 

Bezzy1946

Registered User
Jul 18, 2017
42
73
Watford
@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
Oh goodness I feel so sorry for you. My story is not as bad as your one but my husband has dementia, would fall over constantly and couldn’t get up and has colitis so every day it was cleaning up poo off the floor and so much washing. He would shout at me and swear(I know it was the dementia but it’s very hurtful). I had to call the paramedics to get him up off the floor as his legs just wouldn’t bend and I couldn’t lift him (I suffer so much now with my back and knees because of trying to lift him). I spoke to our doctor in the end as I felt I was going to have a breakdown and she arranged for two weeks respite which has turned into permanent residential care since February. Hard decision to make but i couldn’t continue . I am 73 and Alan is 79. I wish you all the best, talk to your doctor make them see how ill it is making you. I know not a lot can be done at the moment but get the ball rolling xxx
 

Sunshine2*

Registered User
May 16, 2019
97
Oh goodness I feel so sorry for you. My story is not as bad as your one but my husband has dementia, would fall over constantly and couldn’t get up and has colitis so every day it was cleaning up poo off the floor and so much washing. He would shout at me and swear(I know it was the dementia but it’s very hurtful). I had to call the paramedics to get him up off the floor as his legs just wouldn’t bend and I couldn’t lift him (I suffer so much now with my back and knees because of trying to lift him). I spoke to our doctor in the end as I felt I was going to have a breakdown and she arranged for two weeks respite which has turned into permanent residential care since February. Hard decision to make but i couldn’t continue . I am 73 and Alan is 79. I wish you all the best, talk to your doctor make them see how ill it is making you. I know not a lot can be done at the moment but get the ball rolling xxx
Hello, Reading your post, it all must have been so hard for you and you’ve done a wonderful caring job. So many similarities and like you, my husband shouts and swears and has many falls and blames me for everything. I’ve helped him constantly with every aspect of his life for nearly 40 years. He’s never helped me with anything. Even earlier this morning he’d managed to kick his legs out of the bed and was thudding away, which doesn’t help my problem spine, neck and everywhere else. He blames me, they are his plank like legs that he has no control over and I repeatedly have to lift them back in the bed. Everything has always been about him, but he’s not bothered about the pain I’m in , he tells me.
A placement was found last month whilst he was in hospital, but I couldn’t go through with it due to the Coronavirus, as he’s only 58 and was calling me up to 42 times a day wanting to come home. I think all us carers, put the other person first always and this is why our own health suffers.
Take care and get some much needed rest. You’ve done a very hard, caring role. Enjoy the garden sunshine and birds etc.
 

Sunshine2*

Registered User
May 16, 2019
97
Good Morning all and I hope you are all okay.
Haven’t posted for a while and will just feel so much better if I can just put some of my feelings into words.
Having so little sleep with regards to my husband who has had aplastic anaemia, a brain haemorrhage, has epilepsy, has multiple sclerosis, has had a mini stroke and has ms dementia and for many years has had an indwelling catheter which I look after and do all personal care and generally wait on him day and night, as he gets angry if he doesn’t have instant, constant attention.
Was up five times through the night with him from 2.30am and he only went off to sleep at midnight.
He thud, thud, thuds the bed, as he struggles to get up and due to my Osteoarthritis, carpal tunnel syndrome and extreme pain in my neck and spine, I am unable to lift him now either. He reckons he is going to the toilet for a wee and drags himself along, despite the fact his urine is in his leg-bag and I quickly have to take his night bag off and drain this, so he doesn’t trip up. I show him the bags to no avail. He just sits there for half an hour and doesn’t flush the toilet now, leaves the lid up despite having just opened his bowels and he makes such a mess of the toilet bowl and his pyjama bottoms.
No amount of reasoning with him works, he just gets shouty and angry and tells me to ‘p... off’
I’m totally exhausted, in pain everywhere including my face and for once I’m thinking about myself, instead of the devoted care and attention I’ve given to him for the last 30 years during all his health problems and guess what, he still won’t have the toilet frame around the toilet.
Hoping I will be able to book him in for a little respite holiday in the future, however, that may be a long time away and I will just have to carry on.
The only normality I have is a weekly shop for elderly relatives that have to stay home and a little chat from their path.
Obviously, I speak on the phone with family which is wonderful.
Take care everyone.
 

Sarasa

Registered User
Apr 13, 2018
1,850
Hi at @Sunshine2* , I know you felt you had to bring your husband home even though the hospital and social workers were not sure that it was a good idea. You've given it a really good go, but it is obvious you can cope physically anymore let alone mentally.
Can you get on the phone and try and sort out some care now? If your husband does go into a care home you will still be caring for him, but in a different way. certainly if he has a fall, don't try and get him up, just call 111.
 

imthedaughter

Registered User
Apr 3, 2019
507
Was up five times through the night with him from 2.30am and he only went off to sleep at midnight.
He thud, thud, thuds the bed, as he struggles to get up and due to my Osteoarthritis, carpal tunnel syndrome and extreme pain in my neck and spine, I am unable to lift him now either. He reckons he is going to the toilet for a wee and drags himself along, despite the fact his urine is in his leg-bag and I quickly have to take his night bag off and drain this, so he doesn’t trip up. I show him the bags to no avail. He just sits there for half an hour and doesn’t flush the toilet now, leaves the lid up despite having just opened his bowels and he makes such a mess of the toilet bowl and his pyjama bottoms.
No amount of reasoning with him works, he just gets shouty and angry and tells me to ‘p... off’
I’m totally exhausted, in pain everywhere including my face and for once I’m thinking about myself, instead of the devoted care and attention I’ve given to him for the last 30 years during all his health problems and guess what, he still won’t have the toilet frame around the toilet.
Hoping I will be able to book him in for a little respite holiday in the future, however, that may be a long time away and I will just have to carry on.
This is clearly unsustainable. Some others may know better but I'm sure I've heard some homes are taking new residents, and perhaps therefore respite. If you're self-funding it may be easier than not, but if you have a social worker, please tell them how difficult it is. Best wishes
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,310
Yorkshire
@Sunshine2* you really don't have to just carry on, you simply cannot
please call the emergency number for Adult Services on your Local Authority website and read them your last few posts here
tell them you are at carer breakdown, and that your husband's condition and your health issues make both of you vulnerable adults who are at risk of harm through the demands of your husband's behaviour
 

colliemag

New member
Jun 11, 2020
2
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.
W