Sundowning?

[Skylark/2]

Hi I am desperately needing advice re my husband’s sundowning.
This has been happening for months, bedtime is getting earlier and by 5 p.m he is filling various hot water bottles.
He has been in bed since 5.15 p.m, yesterday it was 7.45 p.m but awake by 11.30 p.m. When he wakes, that’s it for the night, our ‘ day ‘ then starts. He’s up and downstairs, making a coffee, asking if I’d like one….I am still trying to sleep. Turning on all the lights, the t.v ( which he can’t work the remotes ) , the gas fire, nothing gets turned off. If he does decide to come back to bed, I’m then up turning everything off……and he is ready for a long rambling chat, I’m NOT..and on it goes night after night , whilst I get more and more sleep deprived, unable to function during the day …..almost. I am at my wits end, thinking of begging the g.p for sleeping tablets. Melatonin doesn’t work.
I know lots of you out there have the same problem , huge sympathy but what do you do to stay sane?

 

[Sarasa]

Hi @Skylark/2 , I hope someone comes along soon with some suggestions, but I think the only solution to this will be your husband moving into care where there will be a whole team on hand 24/7.

 

[canary]

Im so sorry @Skylark/2
His internal body clock is completely broken now and so sleeping tablets may well not work as the problem is not insomnia.

I too think the only solution is a care home. My mum was awake all night when at home (and also then going out in the cold and dark wearing only her nightwear) and she continued this in her care home too, right up to the end

 

[Dianej]

This all sounds so familiar and I am wondering how much worse it can get before I can't take any more. OH is the sweetest most loving person until 3.30pm when he starts to become agitated. By 7pm he is wandering around the house, switching on lights, heaters, moving everything that can be moved, and getting angrier and more verbally abusive to me. He almost seems to be looking for things to break. This week he took the kettle to pieces, pulled a coat hook off the wall and ripped a T shirt because he decided to pull the neck down over the back of a chair. If I try to stop him he just gets angry.
He now won't wash or shave and gets angry if I try to help him. He spent last night scratching his skin until it is red raw and won't let me put cream on it. I arranged for a home hairdresser to come today, which he agreed to, but when she got here, he wouldn't let her cut his hair. The social worker seems to think that if I have some respite breaks, I will be able to manage. I feel like walking out of the door and never coming back.

 

[Skylark/2]

He woke up at 7.45 p.m, after sleeping since 5.15 p.m Is now wide awake, I on the other hand am ready to try and sleep. Not going to happen. He is searching round the house looking for his trousers and wallet, looking ready to blame me for not knowing where they are.
My eldest son and daughter in law think emergency respite care might be helpful and I have social services coming on Friday to carry out assessments for both of us.
He doesn’t want to wash or shower either and goes to bed in a variety of clothes, jackets, gilets, jumpers, vests long johns, thermal socks, gloves, dressing gown……that’s just this evenings attire!
He has turned into an extreme obnoxious, angry, aggressive, suspicious man . Yesterday I was at the surgery and when I returned he wasn’t in. I thought he’d gone for a paper but 20 mins later he returned, angry. Our landline phones were out of charge ( something I’d mentioned before going out) but of course I had done it on purpose so he couldn’t contact me! And I ’ forgot’ about his recent accusation of I’m trying to murder him and get our sons involve too!
I am teetering on the brink of saying enough is enough…….I need a life, at 77 I may not have many years left

 

[sdmhred]

Why not take some emergency respite @Skylark/2? It doesn’t need to be forever, but it would give you time to rest, sleep and make decisions with some space behind you. It would also give others a chance to see how your husband is and make suggestions for the appropriate level of care going forward.

 

[Grannie G]

I would take the emergency respite too @Skylark/2

When social services come on Friday, ask for their help.

 

[canary]

I am teetering on the brink of saying enough is enough…….I need a life, at 77 I may not have many years left

I am amazed that you have felt able to go on for as long as you have.
I would have thrown in the towel ages ago

 

[Bettysue]

He woke up at 7.45 p.m, after sleeping since 5.15 p.m Is now wide awake, I on the other hand am ready to try and sleep. Not going to happen. He is searching round the house looking for his trousers and wallet, looking ready to blame me for not knowing where they are.
My eldest son and daughter in law think emergency respite care might be helpful and I have social services coming on Friday to carry out assessments for both of us.
He doesn’t want to wash or shower either and goes to bed in a variety of clothes, jackets, gilets, jumpers, vests long johns, thermal socks, gloves, dressing gown……that’s just this evenings attire!
He has turned into an extreme obnoxious, angry, aggressive, suspicious man . Yesterday I was at the surgery and when I returned he wasn’t in. I thought he’d gone for a paper but 20 mins later he returned, angry. Our landline phones were out of charge ( something I’d mentioned before going out) but of course I had done it on purpose so he couldn’t contact me! And I ’ forgot’ about his recent accusation of I’m trying to murder him and get our sons involve too!
I am teetering on the brink of saying enough is enough…….I need a life, at 77 I may not have many years left

I’d definitely push for respite. I arranged a week of respite when things were becoming more difficult. It gave me a chance to assess how I felt about the situation and to see how my partner coped. It enabled me to see that full time care would have to be the next step. I set the wheels in motion with the agreement of family and waited for a place in our care home of choice. I felt it was better to have a planned move to care rather than having an emergency situation in which I had no choices.

 

[Skylark/2]

Thanks to all of you who have read and advised me . @Bettysue , your reply makes absolute sense.
I have such mixed emotions at the moment. I feel guilty that I am unable to cope , slowly any resilience that I had is ebbing away. When he is angry and aggressive I too get angry, I should remain calm I know. Am I making too much fuss , other people manage in must worse situations, is it my fault he gets so angry. Questions, questions!, How does one decide when enough is enough. He will fight tooth and nail against going into respite care, he doesn’t think we ( I) need help.
yesterday‘s outburst ended up with him throwing clothes everywhere, some of which knocked my glasses from my face…….sounds funny but it wasn’t and he tried to take my wedding ring off my finger. I gave it to him rather than have a damaged finger and I’ve no idea where it is now.
social services are coming tomorrow, he’ll not like that. He is due to start Memantine in the next few days, hopefully it will provide stability in coming weeks.

 

[canary]

I feel guilty that I am unable to cope , slowly any resilience that I had is ebbing away. When he is angry and aggressive I too get angry, I should remain calm I know. Am I making too much fuss , other people manage in must worse situations, is it my fault he gets so angry.

IT IS NOT YOUR FAULT

Yes, Im shouting, because you are not listening. I know he is blaming you, but he is wrong and you do not have to accept it, nor internalise it

You are "shoulding" yourself - I should do this, I shouldnt do that. No one has infinite capacity to cope and TBH, I dont think that there are many people who are worse off than you.

 

[Sarasa]

@Skylark/2 , please forget any idea that you ‘should’ be able to cope. Your husband’s need are now too great for one person to deal with. I think you’ve gone above and beyond what one person can deal with and are in serious danger of either being badly hurt by your husband or becoming seriously ill yourself.

 

[Bunpoots]

I am amazed that you have lasted this long by yourself @Skylark/2 . I agree with the others that you need respite care with a view to full time care. You may find that your husband calms down when he has an army of carers to cater to his needs. His behaviour is concerning and too much for any one person to manage.

 

[Skylark/2]

I thank all of you for your advice and support.
Today as been uneventful until 3.30p.m ( sundowning?) and he has talked non stop for the last 90 minutes, all of which I’ve heard before. Of course he is starting to prepare for bed and showing me where I can sleep. He just doesn’t recognise me and I am just. going along with it, hoping to avoid any confrontation. It is very sad to hear him retelling stories and not knowing Iwas there along side him.

 

[Grannie G]

Heartbreaking @Skylark/2

It`s so challenging it sucks out all your energy.

 

[Skylark/2]

Could I ask for advice please.
What do you say to your OH when you are placing them in respite care? What sort of ‘ love lies ‘ do you use?
I have no idea how to approach this.
thank you

 

[Melles Belles]

@Skylark could you sell it as a little holiday where he will be waited on hand and foot? Maybe while you have to go to do something for a couple of days.

 

[Cardinal]

I understand your fear. You know you need to put your OH in respite care but how do you physically do that. What do you tell him so he’ll agree to go. How do you get him to get in the car? What do you say when you get there if he refuses to go in.

Ask the care home for suggestions on how to get him there. Maybe you could tell him you need minor surgery and this is a place for the spouses to stay until you get better.

Hopefully someone who’s been through this will tell you how they got their PWD to go into respite.

I know social services came Friday. How did it go?

 

[Ellie2018]

I think so many of us quietly get on with it but we often feel as you do, I know I do. This forum helps to see what you are feeling is normal. It’s all hard but it’s harder when we are blaming ourselves because we feel pressured to feel a particular way. For some reason we seem to think it’s normal to face these things without feeling sad and angry but I would think it’s more unusual not to feel these things.

 

[Skylark/2]

I understand your fear. You know you need to put your OH in respite care but how do you physically do that. What do you tell him so he’ll agree to go. How do you get him to get in the car? What do you say when you get there if he refuses to go in.

Ask the care home for suggestions on how to get him there. Maybe you could tell him you need minor surgery and this is a place for the spouses to stay until you get better.

Hopefully someone who’s been through this will tell you how they got their PWD to go into respite.

I know social services came Friday. How did it go?

Hi@cardinal
Thank you for your suggestions, I know I will have to a plan as he won’t go willingly.
The young chap who came on Friday was very pleasant, but just gave info on day centres and the help they could provide I.e someone to prepare meals, give medication, help with personal hygiene, dressing etc.,……..all of which I do easily. If I can get a decent sleep ( which I can’t due to O.H not sleeping ) then I think, I could manage but whenever I mention sleeping tablets in the short term, I am ignored by the ‘ professionals’.
I am trying to keep O.H at home for Xmas, we have family coming from the U.S etc., and I WAS looking forward to it, now it’s with trepidation. After Xmas, I think I’ll need to look into care homes, so, so sad it’s come to this.
wish I wasn’t so indecisive!!