Sleep problems

[emscub]

I noticed quite a few people talking about sleep problems in a recent thread and wondered whether anyone could offer any advice or simply share their experiences as I always find this useful.

The previous few nights we have had trouble with my Nan being awake at night and roaming around the house (her room is downstairs as she can no longer manage the stairs) and waking us up. She keeps going back into the lounge and sitting in her chair. When asked she says she is waiting for someone to come down. This was never even her normal morning routine anyway and she's so obviously confused that I can't seem to apply any logic to any of it.

She clearly does not know it's the middle of the night anymore and none of us really know what to do about it. It's not even as though putting her back to bed is 'final' as she's forgotten within a few minutes.

My Nan has vascular dementia so I've always thought that her sleeping so much is to do with her heart, but something Bruce said about shifting time made me wonder whether this might be what's happening to her as she's on so many meds now.

If anyone can help in any way I'd really appreciate it. I think we'd all like a good night's sleep, or is being sleep deprived just something us carers have to get used to at some point?

I think the other main worry with my Nan is that we've been caring for her for around 11+ years now and I think we're all seriously fatigued and (already feel terrible for saying/thinking this) wondering how much longer my Nan will go on in this terrible state.

Emma

 

[Brucie]

Hi Emma,

it is really difficult when you need all your strength for caring, but the person you are caring for won't let you sleep to recover!

When she gets up, does she wander for a while, or does she just sit in her chair? If the latter, then why not just leave her there? She may sleep better in the chair.

You might also check her medication. Re-timing it may mean she can have something that makes her dozy at a later time, so she sleeps. You could also ask the doctor for something for her.

We have to change all sorts of things to fit in with the caring regime needed by our loved ones, but - in my opinion - time shifting one's own life is a step too far!

 

[Ruthie]

Dear Emma

My husband used to do this - either getting up and trying to get dressed several times a night, or banging on the (locked) front door and shouting at 3am because he wanted "to go home" or just going downstairs and falling asleep in a chair.

The final straw (when I was at my wit's end and exhausted from all this anyway) was when I woke up at about 2am and found the whole house full of gas - he had got up and gone downstairs and turned the gas cooker on, then gone to sleep in the sitting room. He had shown no interest in the cooker for about 4 years - I think that he probably thought that the gas tap was a door handle, as he would try everything to get out (in fact twice broke strong brass door handles right off). It was that night that I realised that I just couldn't cope any more, and he was admitted to hospital next day under Section 3.

If she falls asleep in her chair in the sitting room it may be best to let your Nan sleep where she wants - it may help to stop the time shifting - but do make sure there is no way she can harm herself or the rest of the family by doing anything like my husband did - if the Central Heating had lit up, it could have been a different story, although as things have turned out, I sometimes think it would have been good for both of us to go out together in a big bang! As you say, there is no logic you can apply to this situation, and this makes the whole thing worse, as there is no prospect of finding a logical solution.

I don't think you should feel bad about wondering how long this can go on - I certainly have felt like that and my husband is coming up to 10 years with dementia, the last 15 months of which he has been in hospital. He is deteriorating all the time, physically as well as mentally, and I can hardly bear to see it, but suspect that as he is only 61 and still relatively fit compared to most of the other people in his unit, he could go on for years yet. I sometimes wish he could have a sudden heart attack or something so I know he is at peace, and that is an awful thing to admit to myself, as I still love him so much.

Please don't feel guilty, you and your family have gone on looking after your Nan for much longer than many people are able to do, and it won't help her if any of you get ill because of it.

Is there any prospect of respite care or full time care - none of us want to think about it, but the time may be approaching where your Nan needs to be looked after by people who only do 8 hour shifts and have time off to sleep and have a life, not 24/7 as you and your family are doing.

I have read many of your posts Emma, and really admire you for how you care for your Nan, and I am concerned at what all this is doing to you.

With love

Ruthie

 

[Brucie]

Hi Ruthie

I think if we wrote a list of common one-liners, your ones below would be there:

I sometimes think it would have been good for both of us to go out together

but suspect that as he is only 61 and still relatively fit compared to most of the other people in his unit, he could go on for years yet.

I sometimes wish he could have a sudden heart attack or something so I know he is at peace

I recognise them all from my own experience with Jan.

 

[emscub]

Thanks Ruthie and Bruce,

I really appreciate what you said about reading my posts Ruthie, thankyou. I truly admire you and how you have coped with all you have had to deal with.

She does wander around the house which is why we end up waking - and she isn't sleeping properly either. She wanders and then sits and waits. We've just had the district nurse come to do an assessment to see if the doctor needs to visit. So we're expecting the doctor sometime this morning.

My Mum has also rang and spoken to our social worker who has been brilliant, and the social worker has said that we need respite care arranged now, so is phoning around to sort something out. I don't want my Nan to go - which I'm sure is the way most people feel - but part of me knows that only we are aware that this is her house now. She does not know where she is or who we are anymore.

Luckily we had a good district nurse as the lady who comes normally to dress my Nan's legs (ulcers) is terrible - constantly telling us that my Nan's legs are 'getting better' and that 'she manages quite well', when the truth is that she now does nothing anymore - she just thinks she does.

I have just had a letter inviting me to interview for a Masters to train as a Social Worker this morning so that's a bit of good news!Only about two months to go until my degree is completed!

 

[Brucie]

Hi Emma

great news about your interview. Good luck and I hope everything goes as you would wish. Something tells me you would be rather good!

 

[Geraldine]

Hi again Em

I'm afraid the lack of sleep with Mum was my final straw. After 8 months of being woken 6 or 7 times a night and then being woken early in the morning I cracked and Mum had to move in a Nursing Home. I would really urge you and your family to try and put something in place before 'breaking point' is reached as it must be so much better to have a little time to consider options before having to make emergency decsions. Great news on application and ditto Brucie!!

all the best Geraldine

 

[Ruthie]

Good luck!

Hi Em

All best wishes for your interview - you would make a brilliant social worker, just wish that some of those I have come into contact with during my husband's illness had experienced some of the things that you have been through. (Not that I would wish it on anyone, now I come to think of it!).

love

Ruthie

 

[emscub]

Thankyou Ruthie and Bruce (again),

We have had a wonderful social worker for the past few months, who has remained on our side when everyone else seems to be fighting against us.

We had a dreadful day yesterday..

My Nan could not walk on Wednesday night, and with four of us supporting her we could not get her to move, so we sat her in an office chair (bit of improvisation) and wheeled her back into her armchair, as her bedroom is down two small steps which we could not manage.

She then stayed in the armchair all night. We then had to decide what to do about it and decided to give her a chance to sleep as she's had so many disturbed nights now, that we thought perhaps she was just exhausted. In the morning my Dad rang the on-call doctor's number and was told it was not a medical problem (although when the doctor called on Wednesday in the daytime he said that all of this could be due to a chest infection as she has a bad cough). My Mum later rang our doctor who did not know what to do and said it was either CTOPs (??) or hospital so arranged for CTOPs to visit (although we did not know who they were). My Mum rang the social worker who came to visit within about 15mins and said she thought my Nan should be in hospital. She rang the doctor who she said seemed to agree, so we were to wait for him to visit about 1pm.

During the morning two women from CTOPs visited trying to get my Nan to walk, which was highly stressful as my Mum and I were trying to explain that it will now be very difficult/impossible to implement walking aids/commodes without constant supervision as she will be unable to use them. They could also not give us an answer as to what to do during the night.

Doctor came and obviously did not want to have my Nan admitted, which the social worker was later completely surprised by, and said that we should give it 24 more hours, which we agreed to, as one more night did not seem that long.

In the afternoon, a nurse (from CTOPs?) came and thoroughly annoyed everybody by not listening to anything we had to say and trying to push us into a corner. She said that she was going to try and see if my Nan could manage the stairs down to her room so she did this, and then emerged without my Nan (at 4pm) - obviously planning to leave her down there in her chair - after saying that putting her in hospital would disorientate her!! My Nan is always in our front room, and putting her in her room at 4 in the afternoon, with nothing to do, and no-one to talk to, where one of us will have to sit (where I don't know) with her is no solution.

In the end I think exhaustion and stress got to my Mum and she broke down and shouted at the nurse.

Today my Nan is in bed, as she does not want to get up. Which I (and my Mum) have NEVER seen her do. She seems a bit brighter in herself but still has a bad cough, and a a big lump by her shoulder which the doctor says is her lymph gland (which might or might not be serious). She is also seriously constipated and her stomach is huge, and we're having to feed her things as her sugar levels dropped to 3 this morning.

Well that was a very long post - sorry. I had to work last night too from 6-10 with a lady who has dementia, so by the time I got home I was absolutely exhausted. I hope today is better.

 

[Brucie]

Hi Emma

Grief, it shouldn't be like this! Why do we always seem to be working AGAINST the so-called professionals who clearly haven't a clue?

I'll restrict myself to the constipation thing, as it can affect all manner of other aspects of her health.

Have you tried Lactulose? That always worked for Jan and they are still giving it to her.

You have to be careful as over-dosing can lead to a bit of a mess

 

[angela.robinson]

hi emma ,read the thread payback time ,theres lots on constipation the best i found was movecol and linseeds crushed ,but a couple of dulco lax for speed.ANGELA

 

[Geraldine]

Hi Emma

A wonderful continence nurse who used to see Mum swore by a combination of Prune Juice and Lactulose. You can by Lactulose as a syrup over the chemist counter. Have you heard about the respite - pick up the phone and suggest things might be heading for crisis levle repite!

Geraldine