never ending bedtime

[TinaT]

Husband Ken went into 'respite' early last month whilst we had a new bathroom and kitchen put in. I was advised by the Consultant not to visit him as this would unsettle him but I did phone and speak to him each evening at the same time. The family also phoned him each day. He only stayed five days when I was phoned by the home and advised it would be best if I collected him early as he was too distressed to stay any longer. So I brought him home to a house which had a building site going on inside. Thankfully a week later the workmen left and I could get the house back into a liveable condition.

Since his stay in respite his insecurity and anxiety levels have rocketed to an unbelievable level. His obsessive behaviour makes life impossible for me from about 4pm each evening. He paces around, sits rocking himself and hand wringing, constantly checks where my handbag is, where the house keys are etc. I get him ready for bed about 8.30, make him his bedtime drink and give him his tablets. He then goes to bed at about 9pm. Every 10 or 15 minutes he wanders into the living room, checks where I am, sits down for 5 minutes then I have to put him to bed again, kiss him goodnight and tuck him in. This routine lasts all evening until I go to bed myself. I've tried letting him sleep on the sofa but he still gets up every 15 minutes and wants to go to bed. He goes to half day care Saturdays and Sundays and I've been phoned a couple of times and been asked to bring him home as he has got into an extreme anxiety state.

Things got so bad last week that I phoned the mental health nurse.
He was so kind, arranged an emergency meeting with the Consultant and the outcome is that Ken will be going into hospital for a medication assessment in 10 days time.

I am now into unknown territory. What is the usual length of time of the stay in hospital? Would it seem bad of me to go away for a few days whilst husband is in hospital (I badly need a break) or should I visit him each day. What happens about the care worker who comes to the house 3 mornings each week? I pay him by direct payments so should I inform the local social services department? I don't want the care worker to lose out on his payments. I don't want him to find other work whilst husband is away or I might lose this excellent care worker altogether. I think I could justify continuing to pay him as he is prepared to visit the hospital on his care mornings and take husband out for a walk. Has anyone out there advice for me please?

 

[Grannie G]

Dear Tina,

I`m sorry I can`t help you, as I`ve not reached this stage yet, but I just want to say how sorry I am you are facing such an ordeal.

I hope someone will be more helpful, and you`ll let us know how the situation develops.

Take care xx

 

[Taffy]

Hi Tina, I can't help you as I dont know how the system works in the U.K. I am pleased that you have a excellent carer,I think it is very caring of him to be prepared to go into the hospital and take Ken for a walk. Tina, I think it would be a great idea for you to take a few days break. I can only wish you well and hope that everything works out in your favour.Take Care. Taffy.

 

[Skye]

I get him ready for bed about 8.30, make him his bedtime drink and give him his tablets. He then goes to bed at about 9pm. Every 10 or 15 minutes he wanders into the living room, checks where I am, sits down for 5 minutes then I have to put him to bed again, kiss him goodnight and tuck him in. This routine lasts all evening until I go to bed myself. I've tried letting him sleep on the sofa but he still gets up every 15 minutes and wants to go to bed. He goes to half day care Saturdays and Sundays and I've been phoned a couple of times and been asked to bring him home as he has got into an extreme anxiety state.

Hi Tina

I'm sorry I can't help with your question, I've no experience of assessment -- yet!

But the 'never ending bedtime' I can relate to! John starts wanting to go to bed in the middle of the afternoon, and from then on the questions are constant. I manage to hoild him off by telling him he hasn't had tea yet, but that doesn't work after tea.

I've tried putting him to bed for a nap, but then he doesn't see any reason to get up again.

He now goes to bed at six, the longest I can hold him off. Then, like your husband he comes down regularly to check up on me.

One of John's problems is and over-active bladder at night, so I often have to change him three or four times. If I could persuade him to stay up later, the problem would be less. However, ther's no way he can understand this.

Sorry, no answers, just immense sympathy.

Love,

 

[Margarita]

I have a good care worker , that she has a few other Jobs also

When mum go to respite for a few weeks she always come back .

Your not really allowed to keep paying them , if your husband go into respite or hospital and if social services find out your going to have to pay the money back out of your own pocket .

I would not do it if I was you .

Now that may be a good idear

I think I could justify continuing to pay him as he is prepared to visit the hospital on his care mornings and take husband out for a walk. Has anyone out there advice for me please?

talk to social worker about it , your venerable at the moment so of course he would agree .

please don't take that the wrong way .

Don't put yourself in a situation that they could take direct payments away from you .

Could they not send your husband to a day care hospital assessment?


I don't know what medication your husband on .

But what your saying

Since his stay in respite his insecurity and anxiety levels have rocketed to an unbelievable level.

My mother would do things like that her anxiety levels would rocket for a good 2 week 's after respite bed time was all over the place . so was her routine .

My mother is on Exbiza so they no more medication for her , that would get ride of those symptoms . Just time to get back in to my routine .

But I do hope they can help your husband .

 

[Margarita]

Just wondering if your husband been to respite before ?

 

[Westie]

Hi Tina,

I can really identify with you and the 'never ending bedtime'.

Peter, my husband, is waiting to go bed as soon as he has eaten his dinner. To "kill time" - his words - he goes out walking. He will walk anywhere, in any weather. Comes in, announces he is going to bed and then showers, changes and gets into bed. If he's not asleep in 10 minutes (hardly ever is at 7.30!!) he gets up, gets dressed and goes out for another walk. Comes in, showers, changes, into bed. Up ten minutes later and so on and on and on and on until eventually falls asleep. This happens every evening and leaves me feeling shattered and stops my children getting off to sleep. Tried to break the habit but that just makes him angry so, for now, I let him walk.

Peter was in an assessment centre last year to sort out medication. I thought he would be there for a few days but he stayed for 6 weeks. Seemed to take them ages to perform any tests and wait for results. But he had only recently been diagnosed so i suppose they had a lot of tests to do. Not sure if it will be the same for you.

Hope you manage to hang on to your care worker - what an angel to offer to visit and take out your husband!

Hope you get a well deserved break. If you've an opportunity to get away I know what I would do - go for it and enjoy!!

 

[Gill W]

Tina,

Don't know if this is any help but Social Services are looking in to getting my Gran into assessment care, and we've been told it can be a two to four week admission. If you think about the fact they'll be playing around with meds for your hubby to find some level that settles him, they'll need time to change and alter them, won't they, and then see the effect it has?

Of course it could be different for you, but this is a bit of info we'd been given.

Hope it helps.

Gill
xx

 

[TinaT]

Dear all, many, many thanks for your replies. I always seem to say the same thing, it is so good to know you are not alone. I will contact the mental health nurse with all my questions and let everyone know the outcome.

At the moment I am sitting in the day room at Christie's hospital whilst having a quick break from the ward where Ken is recovering from surgery on a small, very slow growing face cancer he has had removed. We are here just for the day thank goodness but if he gets the same kindness and care next week when he goes into assessment as he has had here today at Christie's, I will have nothing to worry about.

As it is, I am worried, terribly worried that he will not get the care and attention he needs next week and I will not get the respite from 24 hour care which I need. I think I will have to book a holiday away, otherwise if I see him suffering I would be tempted to bring him home and repeat the vicious cycle we are suffering all over again.

 

[Margarita]

I think I will have to book a holiday away, otherwise if I see him suffering I would be tempted to bring him home and repeat the vicious cycle we are suffering all over again

Sounds like a good idea holiday away xx

 

[jc141265]

Tina,

First of all it sounds to me as if you are a little worried that the stay in the respite centre might have triggered this new anxiety...from my knowledge of my father's illness I would suggest that it wasn't the respite centre it hasn't been caused by him thinking that he might be abandoned by you and your family but is instead sadly just that his illness has progressed to the next stage. So do not feel guilty about his stay in the respite centre and that you may have inadvertently caused this new behaviour.

Secondly troubles at around 4pm is common in dementia sufferers...you may have heard the phrase 'sundowning'...it has been coined because for some inexplicable reason demntia sufferers regularly get super agitated at this time of day...as sundown approaches. I can only think that it must be linked to the internal body clock we all have and because certain chemicals/hormones are released in our brains based on our body clocks.

Thirdly, if your other half is the same as my father...you may find that he may begin to need to keep you in his sight ALL of the time and may even need to have your attention all of the time as well...this can get extremely bad, it can wear you out as if he isn't sleeping and u want to sleep he may start to interupt your sleep as well. If you do get to the point where your sleep is interupted or you feel like you are going crazy because you never get any alone time you need to do something about it, because in my experience this will make you less patient, it will make you even more emotional than you already are, you are more likely to react in anger, which can in turn start to rub off on your other half and they too will react in anger...as the disease progresses he will have even less control over such negative emotions than you...and anger from both sides can spiral out of control.

So it is imperative that you do get rest, that you do get respite...you will no doubt feel guilty about this need, but in the end it is better for him and u have to keep telling yourself this.

In our case the negative emotions got to such a bad state that mum had to get dad put into hospital in a kind of solitary confinement area because Dad had got violent...but shockingly (but also if you saw the situation you could understand it because of her stress levels) so had she and I suspect that this can exacerbate the dementia sufferers reactions as well.

I think if mum had been able to accept that she needed respite and time away she would have been able to care for Dad longer at home. There are answers to these problems...though eventually sometimes putting our loved ones in a home full time will be the only answer sadly. But before u get to that stage (and if u can avoid that stage and want to avoid that stage/can't imagine that stage..so want to do something about it) try to take breaks where you can. If u think you won't get fully rested unless u don't constantly check up on him, then do that..its better a short break with no contact than having to put him in a home forever sooner than would have otherwise been needed. If he does get violent or very angry be aware that his moods may be feeding off yours so again you may need to take a break. Be aware that sundown is a particularly difficult time..and rather than trying to fight it which exhausts you, just do things to ease it where you can, or at least just ensure he is safe during this time...that he is not doing these things intentionally and that he has less control over his emotional reactions than you or I...i.e. don't take it personally. Also if he does get violent or angry and you have only been calm or passive then it is possible that he may need medical intervention...finally Dad had to be given anti-psychotic medication to calm him down...also eventually if you are not getting any sleep and although most of us don't like to think about drugging our loved ones...sometimes you may need to see a doctor to organise some kind of medication that will allow him to sleep when he should be sleeping. In Dad's case he was waking my Mum up several times a night and would not sleep past 3am in the morning.

So to sum up...respite, respite, respite and consult with doctors on an ongoing basis about potential medical solutions...it is important that you look after you, so you can look after him...you come first in this, I can tell you from experience that this is something you can tell yourself that you are not a bad person for doing...his disease will keep progressing, there is no stopping it at this point...but u, u can do something about your ability to keep caring for him and that is to take respite where u can get it. If his behaviour is out of control no matter what you do..seek medical help for him. Lastly something we learned that made life a thousand times easier so helped reduce everyone's stress levels ours and dad's was to try to avoid the normal human reaction of fighting fighting fighting this disease all the time...instead try to roll with it and trick it when its least expecting it. For example..Dad used to freak out and yell and scream at reflections...instead of fighting this reaction and telling him not to do it and getting freaked out yourself by his reactions...do things to avoid the triggers, like covering mirrors or distracting his attention. Its also amazing the sense of achievement you feel when u succeed in rolling with disease and getting better behaviours from your loved one as a result...it makes you feel emotionally better. A good book that teaches you how to do this is 'Learning to speak Alzheimers'

Good luck

 

[gerrie ley]

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It could have been me writing your thread Nat only you have done it better than I could. My wife Mollie is a sundowner she can start at 5.30 and go on wandering ,picking things up and asking where she should put them, close blinds ,open them and generally be diruptive especially if the tele is on or I am on the phone or talking to someone that may have called.It usually goes on for about an hour and a half and then she will go to bed which thankfully I dont have to supervise as yet.She will then shout out for me to go and bang on the floor until I go up. but then there is no rest as she wakes me at least every hour to tell me the time She then gets up at 5.30 to feed the cat and the birds and this is a daily and weekly routine

All the best Gerrie Ley

 

[Margarita]

Thirdly, if your other half is the same as my father...you may find that he may begin to need to keep you in his sight ALL of the time and may even need to have your attention all of the time as well

That is so like my mother , even if I want to go to bed early she don't like it , so my daughter keep her company . , while I get an early night .

I have to keep reminding myself that she was not like this before the disease, I get very iterated about it sometime & even with all the time I get to myself with mum going to day center , that is the only part I dread , one of many symptoms of the disease that I can not get use to. any other symptom I can handle it , get use to it . I know my mother can't help it . But point black I do not like it .

 

[TinaT]

I've had a bit of trouble getting onto the internet this last 24 hours so sorry I haven't replied before now.

Nat, I cried when I read your response to me. I think you have secretly been in my home with a hidden camera. EVERYTHING you have said has happened and EVERY emotion which you mention, I have felt. You hit the nail on the head about my feeling guilty that I had made my husband's condition worse when I put him in respite in May. It was the first time I have used respite and of course, anything bad which happened afterwards I assumed was as a result of that. Oh, how I needed that reassurance that this is not true and that Ken's behaviour is a part of the process. Also I do know that how I react affects how he reacts and this caused a downward spiral in our behaviour towards each other.

In my heart I know that I must grasp the respite nettle hard. It will sting like hell at first and it will be unbearable to think that he will feel desolate and abandoned but it will be the only way that we can continue to live together. There have been so many pressures in my life this last few months that I feel like a pressure cooker, about to explode.

I am dreading next week when Ken goes into the assessment unit at the local hospital. My stomach is turning over at the thought of it. Please God, it will be worth all this pain and the suffering I know he will go through.

Bless you all, every one of you for showing me such compassion and for bearing your souls by sharing your very tough experiences. As I say over and over again, it is so helpful to know you are not alone and that others are, or have, trodden this same path.
xxTinaT

 

[Margarita]

for bearing your souls by sharing your very tough experiences. As I say over and over again, it is so helpful to know you are not alone and that others are, or have, trodden this same path.

So true I could cry also because if I never read other people life about mum needing me near her in her sight all the time , I would never of believed it was the disease.

my feeling guilty that I had made my husband's condition worse when I put him in respite in May

try not to think like that , because you never made your husband worse the disease did xx

Wishing you all the best for next week