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Sunshine2*

Registered User
May 16, 2019
97
Hello. Yet another sleepless night, it’s 5.54am and he’s been snoring loudly all night and making loud snotty noises. Gave him tissues in his hand to blow his nose, but he insists on me pulling him up, as he’s stranded in the bed, all 6ft of him with his long back and legs that stay straight. Now, he reckons he’s off for a wee, despite me showing him, his leg bag and night bag. Anyone else have these type of problems with MS & MS Dementia, just two of his many illnesses. Thank you for any help.
 

Flavelle

Registered User
Jun 20, 2017
48
Hello. Yet another sleepless night, it’s 5.54am and he’s been snoring loudly all night and making loud snotty noises. Gave him tissues in his hand to blow his nose, but he insists on me pulling him up, as he’s stranded in the bed, all 6ft of him with his long back and legs that stay straight. Now, he reckons he’s off for a wee, despite me showing him, his leg bag and night bag. Anyone else have these type of problems with MS & MS Dementia, just two of his many illnesses. Thank you for any help.
yes, sadly I do. However I am happily single and don’t care for a partner. I do my best to care for my parents & it’s my Dad whose behaviour is very similar to your husband’s.
Dad has not been out of hospital long...( 2 & a half weeks) and he wasn’t fit for discharge and wasn’t given the correct equipment. He went in able to walk and has come out bed bound and doubly incontinent. However, we fitted gym matting on the floor of his room and that protected him a little when he kept sliding down to the floor. We have now been provided with a crash mat too. So the hospital bed he is in is down to the lowest setting and the mat squashed under it. Now all he can manage is to wiggle off the bed, onto the crash mat and then the gym matting. I have fitted a wooden thing so the wheeled commode can go up and down the slight incline to his room and this also serves as a stop so that he can’t lie on the floor blocking the door closed! We currently have the help of a live in carer- my mum is older & she needs qualified folk to help..we so do we!

Now I no longer lift, this stopped before the latest run of hospital visits dealing with self inflicted breakages. I can see the manipulative side to the behaviour. I was in a lot of pain with sciatica when I realised I needed to stop repeatedly picking him up. My children told me to stop. I don’t want the same future for them that has been manifested for me. Tricky to solve though!

Sadly my father continues to repeat the behaviour and last night my son lifted him back into the bed. Usually we explain how he can move himself back, this takes ages but we try, and then have to wait until he is willing to follow instruction. So, intentions haven’t worked out ATM but at least I know where both of them are and at the moment that seems like a good thing.
Enjoy the rays of Sunshine and look after yourself please. That is the main thing actually. He’d be lost without you.
 

Woo2

Registered User
Apr 30, 2019
2,660
South East
I’m sorry you are having such a hard time @Sunshine2* , nothing useful to say at all , just hello and hope today brings a better day and maybe a chance of 40 winks. Take care .
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and an angry day from him. I put his tablets into a container and he insists on taking them himself with the provided water. I could hear him shouting and swearing that he couldn’t find them at the table, whilst I was using the bathroom and gets so angry if I don’t give him constant, instant attention. So I ventured downstairs to show him them. He was then having a poo and decided to strip off, when usually I help him in the bedroom. He slung the pyjamas across the bedroom due to being in a bad mood and slipped off the bed, getting more and more angry. Finally, after two attempts he listened and I lifted and bent his left leg to get him onto the bed, pyjamas, socks and night bag on. As soon as all this virus is over, I will be visiting care homes. I have cared for a selfish, uncaring man for 30 years and I am worn out with all the caring, personal care, lifting and wheelchair pushing. Not the kind of life I envisaged and having to deal with his shouting and swearing. Goodnight all.
Hello, Two hours sleep between 6-8am. His legs lasted until bottom two stairs and amidst all the shouting and swearing from him I had to lift him up to his frame to get to the breakfast table.
I need to follow medical advice now to get him a placement in a care home facility and after the virus is over, I will do that . Thirty years of caring after his Aplastic Anaemia, brain haemorrhage, epilepsy, Multiple Sclerosis, mini stroke, going into a coma whilst in hospital, MS Dementia, Optic Neuritis and Nystagmus, disability and falls, indwelling catheter and poo accidents, all personal care, pushing wheelchair and doing everything has given me Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis in my neck and spine . I can do no more.
However, I want to thank the NHS for getting him through all this and continue to give their care and dedication in these difficult times. Thank you NHS xx
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,258
Yorkshire
hi @Sunshine2*
I'm concerned that you are having such a difficult time now and the restrictions currently in place may continue for many weeks

so you can start looking now, this is the most useful site for listings of care homes
you might contact homes local to you to at least get ypur husband's name on their waiting list

Social Services should be able to help you ... did they contact you?

the Dementia Connect support line may also have suggestions for you ... there's an online chat facility too

and the directory of Support Services may give you ideas of home care companies
 

Woo2

Registered User
Apr 30, 2019
2,660
South East
I agree that it is a huge amount for you to be dealing with single handedly while also having your own health to deal with . I would be looking at homes too as @Shedrech suggests and making some tentative plans . You are just as important and need to take care of yourself too.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello and thank you for all your kind advice. I have looked on that website before, when I booked him in for respite last year. I wanted a highly rated care home, to cope with his needs, as I was travelling to help relatives, but two nights in at the respite care home and I had a call that he’d had a fall and was in hospital for nearly a week.
I was also wondering if he would be eligible for NHS Continuing Health Care Funding? Guess I would have to check the strict criteria. Who would I approach for help on this please? Thank you.
 

Sarasa

Registered User
Apr 13, 2018
1,701
Hi at @Sunshine2* . I think you'll need to do careful research to find the appropriate home. In the meantime if he falls again I'd seriously consider seeing if you can get 111 out. You sound in danger of ending yourself up in hospital not just him.
 

Rosserk

Registered User
Jul 9, 2019
398
Hiya

CHC assessments are currently on hold due to COVid 19. You need to read the COVid 19 bill re CHC funding. I’m afraid unless he’s currently in hospital you will struggle to get funding at the moment. You will also struggle to find a care home willing to take him, most are refusing admissions.

Does he have a Social worker, that’s normally the person who would request the checklist assessment in my area but its different in some areas. It might be worth giving them a ring and explaining your circumstances. You may need to get tough and tell them you can no longer care for him he is at risk and you need help now. He is their responsibility not yours and whilst that sounds harsh your motivation is to get him the best care possible. Do not let them tell you he doesn’t qualify for funding before a full assessment has taken place which is exactly what they will do! Insist you will not be paying for his care until they’ve clearly established he doesn’t qualify for funding. You have to dig your heels in I’m afraid and not give in to bullying, if they insist he doesn’t qualify ask them for their reasons in writing, which usually puts them on the back foot!

Have you printed off the CHC checklist to see what his scores are ?
 

canary

Registered User
Feb 25, 2014
13,418
South coast
When you are looking at care homes, please remember that home with high ratings do not necessarily mean that they are more likely to be able to meet your husbands needs. Some care home (not all obviously) keep their ratings high by purposely only accepting people with low needs who wont be any trouble.

You have to ask them how they would deal with your husbands problems (woolly answers probably mean they have no experience) and ask them what problems they would not be able to cope with.

When you are able to go and look at the homes, try and look past the decor (often quite oldfashioned and a bit shabby) and ignore the bells and whistles like cinema, spas and big potted plants (just asking to be weed into!). Look to see how the cares interact with the residents and whether there are times when nobody is watching them. Having people at all stages of dementia is a good thing - it shows that the home will be able to care for him right up to the end.
 

Sunshine2*

Registered User
May 16, 2019
97
Hello!
Thank you all for your very kind and helpful advice. I will read it all thoroughly and do the research and once this virus is over, will get him a placement.
Gave him lunch and left him nodding off watching a cookery programme, so I took the opportunity to cut both lawns. Came in to hear him shouting, he was sat on the bottom two stairs again. I’d told him to use the downstairs toilet when he’s downstairs! Cannot store any info. Anyway, he couldn’t get up, so lifted him up, kept him upright and guided him to his chair.
I’d showered him, dried him, cut nails, moisturised him and changed leg bag this morning, but it was very difficult to get him off the shower seat and to use the zimmer to get out of the cubicle, again I had to hold him up, so I will just have to give him a good wash from now on, as it’s just too dangerous. Let’s see how long before his behaviour changes.
Thanks again.
 

Woo2

Registered User
Apr 30, 2019
2,660
South East
That sounds quite worrying you showering him and holding him up , think you are right and a strip wash from now , yes take the time to research and then you can be ready to make the next steps . Take care , please look after yourself too .
 

Rosserk

Registered User
Jul 9, 2019
398
You do realise that you can get CHC funding for help at home NOW? You don’t have to wait. I would urge you to call your Local Authority and explain your situation. There is currently funding available to help you while the CHC assessments are on hold you shouldn’t wait you should ask about it now. Please look at the checklist and see if it’s likely your husband would be eligible for a full assessment for funding, if it is you can get that help now. Whilst I appreciate a lot of people are working towards resolving the COVid 19 crises you and your husband are important to.

 

Sunshine2*

Registered User
May 16, 2019
97
Hello and thank you all for your continuous help and support. Unfortunately, there wasn’t any urine output in his leg bag this evening and he was in pain, then I struggled to get him from his chair and to use his zimmer, next he’d had a poo in his boxers. So difficult to keep him upright to get him to the toilet to sit him down and to get his boxers off. He was lathered in poo and got it on his clothes and hands and all over the toilet seat/cover. Many attempts to get him to a standing position, in order to clean him with disposable wipes. Had to get him back into kitchen which was really hard, as I had to lift him again to move his legs along. Community nurses replaced his indwelling catheter as it was blocked. Put him into his pyjamas and managed to get him to his reclining lounge chair, where we’ll both sleep for the night, as he hasn’t the strength to move.
Contacting the Council tomorrow.
 

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