Sleepless Nights…

[Sunshine2*]

Good Morning to all,

I’ve posted before about my husband, over thirty years of caring for him through Aplastic Anaemia, a brain haemorrhage, epilepsy, Multiple Sclerosis, a mini-stroke and MS Dementia for at least the last ten years. He has an indwelling catheter and has occasional bowel accidents.

I have osteoarthritis, carpal tunnel syndrome and cervical spondylosis in my neck and spine due to, in my opinion, all the lifting, personal care and pushing a 6ft. tall man in his wheelchair.

I’ve had many years of sleepless nights due to him needing help to get to the bathroom and despite showing him his leg-bag and night-bag, he still thinks he is using the toilet. He spends the day going up and down his stairlift and throughout the night going for a ‘poo’. Last night we went upstairs at 10pm, I got his legs into bed and then he was up shouting out and visiting the bathroom seven times throughout the night. He can’t comprehend that the indwelling catheter and bags do everything on that side of things . Finally,
got to sleep at 7am until I woke at 10:35am. For a few months he’s had a low dose tablet at night to help him sleep!! The GP won’t allow a higher dose.

it is really difficult dealing with the disability from his Multiple Sclerosis, the constant instant attention from all his shouting and the supervision as he gets about with his Zimmer frame and giving repeated instructions to operate the stairlift (I try to give him some independence).

Only three days ago, I washed and dressed him, gave him breakfast and meds and settled him in his comfy chair. I asked if he wanted to be outside whilst I cut the hedge and sweep up all the cuttings? He didn’t want to, but the verbals I received from him when I went back inside! I realise he can’t store any new information, so the next day I had to get him outside whilst I did more gardening, which I enjoy.

We have a ‘Best Interests’ meeting next week with various people attending (had a text out of the blue), so let’s see what happens there.

Just wondering if anyone else has these night time problems and any solutions please? He eats well with a good diet and plenty of drinks.
Thank you for any help you are able to give and best wishes to all.

 

[electra2008]

Good Morning to all,

I’ve posted before about my husband, over thirty years of caring for him through Aplastic Anaemia, a brain haemorrhage, epilepsy, Multiple Sclerosis, a mini-stroke and MS Dementia for at least the last ten years. He has an indwelling catheter and has occasional bowel accidents.

I have osteoarthritis, carpal tunnel syndrome and cervical spondylosis in my neck and spine due to, in my opinion, all the lifting, personal care and pushing a 6ft. tall man in his wheelchair.

I’ve had many years of sleepless nights due to him needing help to get to the bathroom and despite showing him his leg-bag and night-bag, he still thinks he is using the toilet. He spends the day going up and down his stairlift and throughout the night going for a ‘poo’. Last night we went upstairs at 10pm, I got his legs into bed and then he was up shouting out and visiting the bathroom seven times throughout the night. He can’t comprehend that the indwelling catheter and bags do everything on that side of things . Finally,
got to sleep at 7am until I woke at 10:35am. For a few months he’s had a low dose tablet at night to help him sleep!! The GP won’t allow a higher dose.

it is really difficult dealing with the disability from his Multiple Sclerosis, the constant instant attention from all his shouting and the supervision as he gets about with his Zimmer frame and giving repeated instructions to operate the stairlift (I try to give him some independence).

Only three days ago, I washed and dressed him, gave him breakfast and meds and settled him in his comfy chair. I asked if he wanted to be outside whilst I cut the hedge and sweep up all the cuttings? He didn’t want to, but the verbals I received from him when I went back inside! I realise he can’t store any new information, so the next day I had to get him outside whilst I did more gardening, which I enjoy.

We have a ‘Best Interests’ meeting next week with various people attending (had a text out of the blue), so let’s see what happens there.

Just wondering if anyone else has these night time problems and any solutions please? He eats well with a good diet and plenty of drinks.
Thank you for any help you are able to give and best wishes to all.

Reading this I would say you need to tell someone quite forcibly that you CANNOT manage all this and you need help desperately . Who you tell this to I am sorry to say I have no idea other than copy your post and do an e consult with your Drs practice, inserting your copy. Then they have the whole info in one telling you don’t need platitudes you need “Them” to release you from this impossible situation.

 

[DesperateofDevon]

Please accept all help offered at the Best Interests meeting - you sound exhausted
(((((hugs )))))

 

[margherita]

Hi @Sunshine2* ,
You seem to be beyond the " get as much help as you can" stage . Have you ever thought of moving your husband to a care home?

 

[Sunshine2*]

Hello,

Thank you for all your kind advice which is much appreciated (sometimes it just helps to put it all in writing here).

I have been told for many years that he really needs a team of people helping him and I did put him into two weeks respite a little while ago.
The first night I slept for 12 hours and it was great to have some freedom, without having to give 24/7 care and attention to an often very angry husband if I don’t give immediate answers continually.

When he has one of his frequent outbursts, I think the time is right for a care home, where I could still take him out, if allowed and then I think he’s only in his fifties and I can’t do it to him.

I always said I would keep him at home, as long as I possibly could, but the sleepless nights are getting to me.

He needs help with everything, even the TV remote. Sometimes he has total body weakness from the neck down and gently slips to the floor and obviously it is very difficult to get him back seated.

I am really at a loss at what to do, as we have been together since our teens.

Thanks for listening.

 

[TNJJ]

Hello,

Thank you for all your kind advice which is much appreciated (sometimes it just helps to put it all in writing here).

I have been told for many years that he really needs a team of people helping him and I did put him into two weeks respite a little while ago.
The first night I slept for 12 hours and it was great to have some freedom, without having to give 24/7 care and attention to an often very angry husband if I don’t give immediate answers continually.

When he has one of his frequent outbursts, I think the time is right for a care home, where I could still take him out, if allowed and then I think he’s only in his fifties and I can’t do it to him.

I always said I would keep him at home, as long as I possibly could, but the sleepless nights are getting to me.

He needs help with everything, even the TV remote. Sometimes he has total body weakness from the neck down and gently slips to the floor and obviously it is very difficult to get him back seated.

I am really at a loss at what to do, as we have been together since our teens.

Thanks for listening.

So who’s looking out for you?! This situation is untenable. You are one person and can only do so much. Unfortunately he is not going to get any better. Have you had a carers assessment? I would think of getting carers in . You matter too..

 

[Thethirdmrsc]

I think everyone at the start of this Carers role, says that they wouldn’t put a loved one into a care home, but you have to be realise the toll that it takes on yourself. It’s an enormous emotional rollercoaster.

 

[Chaplin]

Hello,

Thank you for all your kind advice which is much appreciated (sometimes it just helps to put it all in writing here).

I have been told for many years that he really needs a team of people helping him and I did put him into two weeks respite a little while ago.
The first night I slept for 12 hours and it was great to have some freedom, without having to give 24/7 care and attention to an often very angry husband if I don’t give immediate answers continually.

When he has one of his frequent outbursts, I think the time is right for a care home, where I could still take him out, if allowed and then I think he’s only in his fifties and I can’t do it to him.

I always said I would keep him at home, as long as I possibly could, but the sleepless nights are getting to me.

He needs help with everything, even the TV remote. Sometimes he has total body weakness from the neck down and gently slips to the floor and obviously it is very difficult to get him back seated.

I am really at a loss at what to do, as we have been together since our teens.

Thanks for listening.

When your husband had respite care, he would have had a team of people with the right tools and equipment to support his needs. One person on their own cannot manage his needs and I really do think you need to look at a longer term placement so that you can become his wife again and not his full time Carer.
we all make promises to keep loved ones at home but if we all had a crystal ball and could see the challenges in the future, none of us would make such promises. Do push for additional support before the impact becomes too great for you.

 

[Sunshine2*]

Good Morning,

Thank you all for your kind and friendly advice, which is much appreciated.

Please take care.

 

[DesperateofDevon]

Hello,

Thank you for all your kind advice which is much appreciated (sometimes it just helps to put it all in writing here).

I have been told for many years that he really needs a team of people helping him and I did put him into two weeks respite a little while ago.
The first night I slept for 12 hours and it was great to have some freedom, without having to give 24/7 care and attention to an often very angry husband if I don’t give immediate answers continually.

When he has one of his frequent outbursts, I think the time is right for a care home, where I could still take him out, if allowed and then I think he’s only in his fifties and I can’t do it to him.

I always said I would keep him at home, as long as I possibly could, but the sleepless nights are getting to me.

He needs help with everything, even the TV remote. Sometimes he has total body weakness from the neck down and gently slips to the floor and obviously it is very difficult to get him back seated.

I am really at a loss at what to do, as we have been together since our teens.

Thanks for listening.

Such a difficult decision , but reading about the total body weakness rings alarm bells .
Has the GP seen your husband like this ?
I am so sorry that your husband has the diagnosis of dementia at such a young age, but we tend to forget that dementia isn’t a disease of old age. Dementia is a terminal neurological diagnosis, & needs to be treated by medical & social care professionals as such.

please consider contacting your local Admiral Nurse team for support for you. The Dementia Connect helpline will also be able to give you advice & support.

Remember- first & foremost you are a wife , a person in your own right . Your husband loves you for those reasons & you love him unconditionally.
Caring 24/7 is not what he’d want for you , your memories should be treasured of good times & not the worries of caring.

No guilt here … you love unconditionally & the below quote sums up soo many folks experience

 

[Sunshine2*]

Good Morning!
Thank you for your advice.

It’s 2am and I’ve already lifted his legs back into bed three times. Settled him into bed at 11pm, I’d already given him all his tablets at 10pm including one the Dr. gave to help him sleep.

At 1:05am, he reckoned he was going downstairs, as he’d already had his six hour sleeping time limit before he would get a fine !?!

Thought I’d settled him, but twice he was up again for a “wee”, despite not being able to do this for twenty years and as is usual I showed him his night bag which only had 300mls in at this stage; fills up to 1.5L by the morning.

I had him out in the garden early this morning, whilst I was doing some more gardening, so the fresh air hasn’t helped him sleep either.

Being disabled with his MS too, restricts his movement severely, but I’m at a loss at how to get him to sleep. Sometimes I’m up seven times with him.

Doubt I will get back to sleep now, as I am wide awake and listening out for him.

Sending best wishes to you all.

 

[Grannie G]

Best wishes to you too @Sunshine2*

I understand your hesitancy in deciding on residential care for your husband considering his age. I hope you haven`t yet had the best interests meeting and when you do, perhaps you could ask for more respite care either at home or in residential care.

 

[lollyc]

Good Morning!
Thank you for your advice.

It’s 2am and I’ve already lifted his legs back into bed three times. Settled him into bed at 11pm, I’d already given him all his tablets at 10pm including one the Dr. gave to help him sleep.

At 1:05am, he reckoned he was going downstairs, as he’d already had his six hour sleeping time limit before he would get a fine !?!

Thought I’d settled him, but twice he was up again for a “wee”, despite not being able to do this for twenty years and as is usual I showed him his night bag which only had 300mls in at this stage; fills up to 1.5L by the morning.

I had him out in the garden early this morning, whilst I was doing some more gardening, so the fresh air hasn’t helped him sleep either.

Being disabled with his MS too, restricts his movement severely, but I’m at a loss at how to get him to sleep. Sometimes I’m up seven times with him.

Doubt I will get back to sleep now, as I am wide awake and listening out for him.

Sending best wishes to you all.

Please speak to his GP and explain that the tablets aren't working. There will be others that you can try, I'm sure.
You can't continue like this, but getting him (and you) sleeping through the night will help in the short-term.
Can he have a bed with sides, to stop him putting his legs out?

 

[Violet Jane]

As has been suggested on other threads, I would keep a detailed record, over a period of a few days, of what you do with times and timings and a description of your husband's moods and behaviour to show exactly what you are dealing with eg:

12:03 -12:25 H got up to go the toilet. Very agitated. Calmed him down. Explained he has a night bag. Helped him back to bed with great difficulty as he could barely walk
02:14 - 02:35 H started shouting at me and thrashing about. Calmed him down and persuaded him to lie down.
02:35 onwards H restless and I could not sleep. Think I fell asleep around 4am

This will help to give a detailed picture on what's going and why you can (understandably) no longer cope. It will be harder for the SW to brush off your comment that you are having broken nights / your husband is always waking at night etc.

 

[Sunshine2*]

Good Morning,

Thank you all for your very kind and helpful advice.

The Best Interests meeting (four people attending) didn’t happen, I had a call over an hour after the due time stating they would have to re-schedule, which they have for a time later.

I have previously asked the GP if his low dose tablet to help him sleep can be increased and the answer was “no.” I think they are thinking about his limited mobility.

I have made a lot of notes for the meeting and I have a video of him making his way down the stairs without using his stairlift, which I will show them. If he doesn’t want to do something, he won’t, but he’s always been like this and I can’t stress the safety aspect to him enough. I actually have a full A5 diary of his behaviour prior to the MS Dementia diagnosis, which when I gave the Neurologist some notes from it, this helped him.

I do a lot of research on MS, but any treatments I’ve put to the MS Nurse are always rejected, as his MS is too far advanced and he has MS Dementia now.

I just think he has been well cared for, day and night, even after I’ve had major surgery a number of times and there are young people with more to deal with than us.

I have always been a very positive person, but it really helps to put everything down here. Long may everyone help each other.

Thanks again and have a lovely day.

 

[lollyc]

Sorry, but his GP isn't getting up 7 times a night!
Yes, a possible side-effect of sleeping tablets is a falls risk, but so is getting up 7 times a night. If he's asleep he's not getting up, and therefore not falling over.
In my experience the medical profession is very fond of telling you why they can't do something, without actually offering a solution. In other words, live with it. If you could live with it, you wouldn't be asking for help.
Dealing with dementia is often about taking the least worst option e.g falls risk over sleep, because the perfect solution simply doesn't exist.

 

[Violet Jane]

Absolutely agree with lollyc. The medical profession doesn't always look at the bigger picture which includes the carer who is at breaking point. There are risks to Sunshine's husband of getting up so many times at night and there are risks to her as well: injury if she tries to help him and he resists or lashes out or she tries to prevent him from falling; physical and mental health problems resulting from sleepless nights and the stress involved.

 

[Sunshine2*]

Good evening,

Thank you for your helpful advice.

I have another question, if I may, tonight:
I’d given him his tablets one by one with a full mug of water at 10pm. If I don’t supervise him, then he will put all eleven tablets in his mouth at once! Obviously, there is a risk of choking or aspiration pneumonia if he is left to his own devices.

Anyway, he was immediately speaking afterwards, but his sentences didn’t make sense. It was as if all his letters were mixed up. I managed to get him upstairs via his stairlift and he understood all my prompting and instructions and I got him ready for bed with night bag attached and legs lifted into bed.

This speech thing happens very rarely, but I’m wondering if it is aphasia?

Any advice would be much appreciated.

Take care and thank you.

 

[canary]

Yes this does sound like aphasia - often called "word salad" because all the sounds are tossed up together. It might not be the start of him entirely losing speech though. Mum did this a few times when she was tired and confused, or when she had an infection, but she retained some speech right up to the end.

 

[Kika]

Hello, Sunshine2. Having just spent half an hour getting my husband onto the toilet I am exhausted and frustrated, so I can't imagine how you have coped all these years!
As others have said, please be very firm with your doctor and tell them you can't cope and he needs residential care. If anything happened to you he'd have to go anyway. Good luck.