Early to Bed

[Norman]

Anybody had experience of their care clearing off to bed early,like 7.0pm.
Vanishes upstairs and doesn't return,is then found in bed.
This is a new one on me ,disturbed nights yes but not this one.

Norman

 

[Brucie]

Hi Norman

I never experienced this but although not quite the same thing, time shifting happens quite a lot. I was always warned to watch out for Jan sleeping during the day and being up all night. That never happened, but my heart always sank when I awoke because she had woken up during the night.

Clearly, joining her in retiring very early is one option, but the problem of getting out of synchronisation with the rest of the world is a real one. [as if we aren't already way out of synchronisation anyway!]

If it is the first time, don't worry too much; we all get extra tired sometimes. If it becomes an habitual thing, then you may need to think of something.

Best wishes

 

[Chesca]

Dear Norman

No, I haven't had the experience whereby she has taken herself off to bed because she always needed someone to be with her, but have seen Mum's disorientation when the nights closed in and she would think it was time for bed because it 'must be getting late'. But I woiuld bear in mind what Bruce said about finding another new cunning plan if it continues, to try to distract, for as long as you can.

Another learning curve!

Muchos
Chesca

 

[Jude]

Dear Norman,

My parents do this virtually every night now. I try and keep them up until 8.30pm, but very often they insist on going to bed from 7pm onwards, although it does take them an hour or so to actually sleep, as they lie in bed and chat for quite a while.

They seem to be more attuned to night and daylight hours rather than the clock. In the summer, they stay up later and wake up earlier.

They do sleep very well - apart from the nights that my mother wakes and won't go back to sleep, but she seems to have got over that for now.

I have to tune myself in to their new routine, which means going to bed at 9.30pm and I still wake up at 6am.

Jude

 

[Brucie]

Hello Jude,
I don't know why but I find your comment "as they lie in bed and chat for quite a while" very moving.

Companionship for someone with dementia is difficult because even the best of carers can't truly relate, but companionship - at home - provided by people who are both in the same boat is at the same time heartbreaking, and quite fabulous.

 

[Jude]

Dear Brucie,

Sometimes it can be incredibly difficult having both parents with AD, but at other times it's handy in a weird sort of way.

I still feel that Dad is really Mum's 'principal' carer in some ways. Breakfast time is a case in point. They talk they way through it, with Dad doing most of the prompting. 'Here's your cornflakes, let's put on some milk and sugar, okay there's a spoon, now eat it. Ok, we need butter on this piece of toast, and then we spread some of this stuff [marmalade] on the top and cut this bread in half and then we eat it' etc etc. Itime my arrival to ensure that the kitchen [hopefully!] doesn't get flooded by the washing up detail.

What this does, is effectively reinforce actions, skills and routines for Dad and [without my butting in and taking over which I have learnt not to do] keeps his brain active and working.

There are many other routines in the day, such as finding coats and shoes and the putting on of same for walks. Dad also reads the newspaper to my mother during the day.

The 'going to bed' routine is pretty organised too. I help Mum to the bathroom for a wash and then put her into bed. Then I leave my father to get undressed and for them to have their nightly chat which is usually about things they have done [or think they might have done] during the day and plans for the next day. This all takes quite some time, but that's okay and I don't intrude unless there is a major drama.

I really hope that this 'married life' routine will continue for as long as possible, however disjointed and bumbling it can be. It helps to reinforce their idea of being independent and self sufficent, which is all to the good.

I'm also very pleased that all the initial gloomy and negative input from the SS and CPN last year has proved totally unfounded. It's been a bit of a test case really, since I don't know of anyone else in the situation of having 2 parents at home with AD. I'm sure there must be others and would love to know how they are getting along, but it does appear to be pretty rare. Anyway, it's working thus far......

Jude

 

[CraigC]

Hi Norman,

mum has great difficulty keeping dad awake past 7:30 pm, but it really is essential to keep dad occupied and awake as he already wakes in the early hours of the morning full of beans ready for the day.

Generally she tries to keep dad awake and introduces a few routine things in the evening like a light snack, drink at spefic times, that sort of think. It fair to say that his nightime wakenings drive mum completely round the bend.......

Good luck
Craig

 

[Mjaqmac]

Hi guys. Mum has taken to sleeping in the chair all day. She is almost impossible to waken. She is not on any sedatives or tranqs, it's a new phase. But she still has to be watched all day as she will sit forward and fall to one side etc. She talks a lot in her sleep and gesticulates, it's always her mother she's talking to and she will talk for hours when in bed at night and keeps dad awake for hours. He rarely sleeps. If she's in respite or hospital he doesn't sleep either as he misses her.

We find it quite upsetting when SS etc suggest they should have separate rooms, it's out of the question anyway as mum needs supervised at night. But dad says they have been sleeping together for 56 years and he wants her beside him always if possible. These bloody people have no idea that they are talking about someone's husband or wife, the mainstay of their life in these cases. Ok, so sometimes you can feel sensitive but it never ceases to amaze me how uncaring some of these "professionals" can be. It would be a whole different ball game if it were their kin.


If it weren't dad and I doing this together neither one of us could cope alone, mum would have to go into a home.

But Norman, mum did rhyme to go to bed at 6.30pm for weeks after coming out of hospital, it almost drove dad and I insane, fortunately she'll go nowhere alone, and can't get upstairs without our assistance but it didn't stop her asking every 5 mins. She's out of that stage for the moment.

 

[Sheila]

Hi Norm, Mum didn't do it, but we had a great aunt, (Mum did a lot of her care towards the end, I was a young teenager) who got herself into the routine of going to bed at dusk and getting up at dawn, kind of 5 to 5 lark if you know what I mean. It meant she was completely out of cinq. so if you can find any ways to stop it, it would be best for you both. Having said that, on the occasions that Mum put herself to bed in the afternoon, I used to leave her for an hour at the most and then get her up with an "early morning cuppa" etc. or we would have been without sleep for many a night! Hope Peg soon goes back to her old routine, it will be hard for you till she does so try to get some sleep when and where you can. Another friend who had his wife to care for used to tie a string to his wrist and hers, that way, when she went to get out of bed, he got a tug and woke up. Again not ideal, but it worked, she only went into hospital for the last 3 days of her life, he did it till then and would have continued probably, if the powers that be hadn't checked and found she was quite poorly and he was suffering from nervous exhaustion. It's hard to care for a parent, but you guys, and dolls, caring for partners, I take my hat off to you. Love She. XX

 

[Sheila]

Dear Jude, like Brucie, I was really choked by what you said. It is so lovely, in a strange way that despite their illness they are still so aware (most of the time) of the need to care for each other. Only hope we all fair as well. Love She. XX

 

[Jude]

Dear Sheila,

It's wonderful to see them doing all these things together - especially when they sit and watch TV holding hands.......

Jude

 

[Kriss]

Oh Jude

I've got so many lumps in my throat after reading these postings. Poignant, Touching, Heartbreaking, Moving, just so beautiful somehow. I can see why you have fought so far to keep them together - keep it up - they obviously are kindred spirits and belong together here and forever.

If there is such a thing as re-incarnation I bet they'll be back together in the next episode as well.

Kriss

 

[Norman]

57 years married we still hold hands,not watching tv ,she can't understand it anymore.
We kiss we cuddle,she makes me promise that I will never leave her,and I do,and I never will.
We often go to sleep with her sitting in my lap,or me in her's.
We laugh together we have cried together many times.
It hurts when she tells me to get lost ,drop dead,I hate you but you know what we say it's the AD NOT HER.
Even now I think the good times out weigh the bad and enable me to carry on,you can't kill a love that's lasted 57 years.
I wonder how I will live without her when it all ends?

Norman

 

[Kriss]

Norman she is a part of you as you are of her. You'll always be together in your hearts, no one and nothing can break that bond. Every bitter word will just tie you tighter togeher. You had and still have a wonderful thing that many will never even know.

Sometimes I wonder if the horrors of AD is a pay back as it seems too much of a co-incidence that such "special" people seem to be afflicted by it.

Stay strong.

Kriss

 

[Norman]

Kriss
I am sure that your pay back theory has some truth in it.
I felt at one point in my life that I had everything a man could want and more.
It went wrong and now I feel that we were robbed of enjoying our achievements,so I think your pay back could be true
Norman

 

[Kriss]

Norman

it was the same with my Dad, he was everything and more to me. I see the same thing said by so many here; the nicest, sweetest, most generous, loving, kindest, and so it goes on.

Now I'm all wet eyed again - Thank goodness I can go back to work tomorrow and switch off for a few hours. I'm sorry you and so many here don't even have that at the moment.

Wish there was something I could do to make everything all right even for a few hours for everyone.

I hope there are some sweet dreams out there at the very least tonight.

Goodnight
Kriss

 

[Brucie]

Hi Norman

Although I am a mere beginner, as our 36th anniversary was recently, I understand completely what you are saying.

Yesterday was Jan's 64th birthday. That is 13 years into the nightmare.

I baked some rock cakes in the morning, gathered some Thornton's rum truffles, and bought 12 red roses on the way in to see her.

Yes, I know she can't see, but perhaps she can understand me when I say I have brought her ther roses for her birthday. I'd have brought champagne had I thought it would not interfere with her medication. She certainly understood the cake and chocolate, and a huge mug of tea.

No real link in communication between us on the day [the previous day Jan had been quite wonderful and bubbly, trying all the time to talk], but one of our longest-standing friends had asked if she could come too, so there were three of us crawling in the 'soft' room. Nina was visiting her Dad in Swansea, but would otherwise have been there.

I opened her cards [from family who never visit], and there was a card and package from Nina's daughter and family, with more goodies, and a beautifully hand crafted card from Nina's 7 year old grandson. I read them to her.

There may not be much support out there, but the friends who have stuck by are pure gold.

 

[Mjaqmac]

Norman and Brucie, what beautiful men you are! You should both be very proud of yourselves and the achievements in your marriages and in your strong hearts to carry the load.

Boy when you two said "In sickness and in health" you meant it with bells on.

Caring for a parent is hard but I don't think I could cope if it were my partner.

You're wonderul.

 

[storm]

Dear Norman,I know this might sound trite but you have so many memories of the happy times you both shared,to have shared a love that is so special is something few of us have ever expereanced. My heart goes out to you both.storm

 

[Sheila]

Dear Brucie, you paint such a lovely picture, it must be so hard for you. You are very special you know, theres an awful lot would have walked away by now. Love She. XX