Night times, how do people cope?

[marj Forum Member Find all posts View Profile Close marj]

Hi, this is my first time post, although I've been on this forum many times looking for advice, and usually finding it.
I have found so far that any problems I've faced, there is someone else out there who has faced the same.
My partner was diagnosed on November 2015. We didn't live together at that point, but he moved in with me soon after diagnosis as he lived in a second floor flat. Right from the start he was totally resistant to accepting help, he was determined to fight the disease. Consequently planning ahead was almost impossible. Life was very difficult as he only listened to advice after a crisis, eg a bad fall. As you can imagine it was very frustrating for me, and after many rows , I had to accept that he was going to deal with things "his way".
Fast forward to this year.
He is now living upstairs, ( wouldn't listen to advice about adapting the downstairs)and is completely bed-bound. After I almost had a breakdown he agreed I needed help and could see I couldn't cope alone. We now have his son, and a friend of his son, sharing the care, coming in three times a day to get him up in the morning, to shower him etc midday, and to call at night about 9.30 ish to move his position and see to anything he needs at that time. I go to bed at 9pm every night. At least, I go to my room, try to relax and de-stress enough to sleep! He then wakes me (by phoning me) at 2am, to go and help him lie down ready for sleep.
Now, that worked for a while, although I have always had trouble getting back to sleep, but recently the wake up calls have increased. For example last night ( a particularly bad one ) I was up at 11pm (he needed a wee), 1 am (same), 2.15am to settle him down (he watches tv until then), 4 am (to move him on to his back for a few minutes to relieve pressure on his shoulder ), 5 am and 6 am ( same) and then I got up at 7.45am. From that point he shouts me whenever he needs something and the numerous trips up and down stairs begin!
I am not the fittest 67 year old , I have arthritis "everywhere". My back is the worst, my knees (already had one replaced over 10 years ago), my neck and shoulders, and now my hands are starting to be affected too. So I struggle with any lifting, and the stairs wear me out.
To sum up, (sorry for the length of this first post!) ............ I am now at my wits end. I'm exhausted. Everyone around me saw this, and I've managed to arrange one night off weekly ( where possible) and I go to my daughter's for a decent nights sleep. This started about 3 weeks ago and did help initially, but now after more and more nights like last night, I realise I can't do this any more. I'm physically exhausted and am on medication for anxiety, have counselling..........which all help, but the lack of sleep is impossible to live with. My partner is getting weaker, he is now struggling to talk at all, his breathing is laboured, appetite very small, but he recently got over a bad chest infection, to everyone's surprise, so is quite strong.
As we all know ,it's impossible to predict how long he will be with us, so this situation could be the same for a while, or worse. I feel so guilty saying to everyone, I can't cope, but I just can't.
It's very expensive for all night care and whilst he could afford it, he is very reluctant. I don't have any other ideas.
Someone out there must have had the same issues, any suggestions?
Apologies again for length of this........ I think I needed to get it off my chest, so if you've read it all, thankyou.

[Lynne K Forum Member Find all posts View Profile Close Lynne K]

Marj, no apology necessary. I’m glad that you had the confidence to post all of that.

I can understand how you feel about not being able to cope any longer. Everyone needs sleep and deprivation destroys us and can lead to ill health. So your situation certainly needs to change.

Would your partner agree to apply for CHC (Continuing Health Care) so that a package of care can be organised? Your partner’s OT ought be able to advise about this.

I’m not in your situation but see messages about the subject every now and again.

Good luck with getting a care package in place, hugs, Lynne x

[denise Forum Member Find all posts View Profile Close denise]

Oh marg

you have gone way above the call of duty. You can't keep that up or you will make yourself ill and that won't do either of you any good. He can't have it all his way because this impacts on both of you. You definitely need a care package like Lynne suggests. I know it isn't easy but think about yourself. Not easy because my husband thinks I'm here as his nurse and hired help. He just yells and I'm supposed to come running.

get the help in that you need to help you with him.

love and hugs Denise xxx

[marj Forum Member Find all posts View Profile Close marj]

Thanks Lynne,
Yes, I will look into CHC again. We had a lovely social worker at one point who mentioned it, but at the time we didn't qualify. As often happens, that social worker moved to another dept, and I have to admit I forgot about that. It's worth a shot.x

[marj Forum Member Find all posts View Profile Close marj]

Thanks Denise, I can't tell you what your last two sentences about being nurse and hired help meant to me! That's exactly how I feel! And yes, all he seems to do is yell at me.
How do you cope? x

[Bowler Forum Member Find all posts View Profile Close Bowler]

Marj. Absolutely no apology needed I’m only glad you have put this post on.
I have walked in your shoes having cared for my Ann for 5 years and it’s certainly not easy.

You don’t say if you are linked to a palliative care team or what external support other than family you have.

I would urge you to contact either you local MNDA branch or the connect team either via this forum or by phone on

08088026262. They have trained people who will with your permission will contact you to talk through all your issues and advise on actions needed. They can liaise with your medical team and much more.

If it helps and you willing to let me know, via PM if you want, what area of the country you live I am happy to facilitate getting that first contact. Trust me when I say you won’t regret it.

[Suefromwakey Forum Member Find all posts View Profile Close Suefromwakey]

Marj hash as this may sound.................your in charge and he needs to get used to it..............cruel to be kind and all that! you tell him this is whats happening and that's it or else he can jog on...................how many carers bugger themselves up gawd knows..............tell him enough is enough and that's it,

What you might find is that all this reluctance for help whether it be sticks, walkers, beds or physical help will fall into place and he will accept it once it gets going.

Be strong

Sue

[Ellie Forum Member Find all posts View Profile Close Ellie]

marj

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marj A warm welcome to the forum.

What a dreadful situation you're in in your own home, Marj. You must have some resolve and patience not to have turfed him out by now...

Sorry for asking such a question but, is he taking the mickey and/or testing you? Watching TV until the early hours, then expecting you to settle him - that's not on. There are 2 of you in this, just because he has MND does not mean the world revolves around him.

There is no need for you to be at his beck and call all night - whatever about 1-2 times per night, but no one can sustain constant interruptions to their sleep and function well, not you, not your partner. There are helpful things to improve his nights and, by default, yours:

I think he needs a proper, comfortable, pressure relieving mattress.
If he needs to pee 2x during the night, he can use a bottle or condom catheter, or indeed take meds.
If he is antsy and needs meds to settle and/or sleep, he can have meds prescribed.

You don't say if he has much involvement with healthcare professionals in his care - e.g. his breathing; has he had assessments or does he want any help and intervention?

Go for CHC for sure, 🤞🤞

Big hug to you.

Love Ellie.

[denise Forum Member Find all posts View Profile Close denise]

Marj

I cope by yelling back. It doesn't solve anything but I feel better. Ive told him he can find himself a nursing home or find someone else to look after him. There's no need for rudeness.

love and hugs Denise xxx

[marj Forum Member Find all posts View Profile Close marj]

A big Thankyou to all of you that have responded so quickly to my post, it really helped to know that there are others out there with similar issues. I'm usually ok at coping but this lack of sleep is like slow torture, and I can't seem to function properly.
Between you there were several suggestions. I will look into the CHC again to see if we qualify. We do have contact with a Specialist Nurse, OT, GP, and palliative care nurse too, but they too struggle in getting him to accept help. He has stated that he wants no interventions, with eating or breathing. When he had a chest infection the GP wanted him to go into hospital to be assessed, but he refused.
He does take Lorazepam after a lot of persuasion, at night to help relax him......... but they haven't stopped him getting me up!He hates medication, so convincing him to take anything elseis unlikely. He can't use a bottle for a wee as he has no use in his hands except for the fingers on his left hand which allow him to use his mouse for his computer. He has no use in his arms or legs and his neck is very weak.
He sits up watching tv till 2am because he says he's not tired until then.
We are currently looking at a better mattress for him, although the one he has is good quality, bought with the bed from Opera beds.

I have tried being tough with him and tried to stick up for myself but I'm afraid he always gets the last word ie, I'm the one that's dying! Or....I'll put myself in a care home, then there'll be no money left for you when I'm gone! When it gets to that point I'm afraid I walk out.

When I write it down, he sounds awful, but we've been together over 20 years, he wasn't always like this. This disease has changed him from being strong, athletic, a bit stubborn, a bit selfish, but kind man, into someone who is completely selfish, demanding, very stubborn, and worst of all - bitter .
It's clear I am going to have to persevere and be strong, and as stubborn as him! I have to get some help.

Thankyou, all of you, for your thoughts and suggestions, you have given me a bit of my strength back! And reassured me that I'm not alone, it just feels that way sometimes. xxxxxxxx

[Mary C Forum Member Find all posts View Profile Close Mary C]

Hi Marj,
What a hard situation you are in.It’s difficult when your partner won’t accept help, advise or medications.
What would happen if you became unwell and just couldn’t do this level of care?
Its sad he won’t accept any help if only for your sake.
Is he more likely to listen to his son about the need for night time care?Can you discuss with his son that you really can’t sustain this night after night.

Unfortunately while you continue to try and sustain this level of support nothing will change unless one of you hits a crisis.It sounds like your partner isn’t willing to make any changes so maybe you need to talk to him with his son and palliative nurse present to outline your suggestions for some changes and the time frame you want additional care to be in place.
Maybe you could suggest you will be then increasing your nights at your daughters to give you some respite from this tense situation.

As mentioned on here he may qualify for CHC funding for night care cover and the palliative care nurse would be the person to ask.Obviously your partner has to agree to it before an application can be submitted.
Do you think having night carers would be the answer ? At least you could sleep.

I understand your partner is as you describe bitter and selfish and upset he has got MND .Take it he won’t accept input from psychologist / counsellor.?
There is help as others have suggested but maybe the time has come for you to outline your needs now to your partner .
Certainly not telling you what to do but just making little suggestions.
Good look Marj..time to look after you a bit more now.
Best wishes
Mary

[Bowler Forum Member Find all posts View Profile Close Bowler]

Marj. We had similar issues with the nights. The difference being Ann was tired but struggled to get off to sleep. She too took Lorazepam. We found half a sleeping pill taken with the Lorazepam got her off to sleep but it wouldn’t last long so the getting up to turn 3-5 times every night continued right up to the end.

Are you able to grab Half an hour sleep yourself during the day.

I’m sorry to say if his voice does go then unless you have a fix in place it is not going to be good. I know from experience.

CHC or some other form of care appears the way forward wether your husband likes it or not.

[matthew55 Forum Member Find all posts View Profile Close matthew55]

Pills work for me, that and early starts 😀x

[Gordan1111 Forum Member Find all posts View Profile Close Gordan1111]

Hello Marj. This thing is horribly cruel to - to the people with it and to the people who live live with them. It makes once active persons resentful and terrified. It changes personality and removes all pleasure.

[Ellie Forum Member Find all posts View Profile Close Ellie]

marj

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marj You can't physically keep going as you are, something will break, then there is a real chance he'll end up in a care home.

Lorazepam if short acting, given that he doesn't want interventions for breathing or feeding, switching to Diazepam is an option for nights (same family of meds but it's longer lasting) I'd slip him a few Mickey Finns at 11pm 😉😉

Please keep in touch with us. xx