A life in the day of.........................

[burfordthecat]

Oh Sylvia

So sorry to hear that you are had a really bad night with Dhiren again. The lack of sleep and exhaustion is bad enough by itself, but when you factor in having to look after Dhiren...it is impossible to continue that for any length of time.

You are just as important, as is your health. I think you should get some emergency respite...immediately. Give yourself a chance to recharge your batteries and then you'll have a clearer mind to decide the next course of action.

Love and hugs to both you and Dhiren

Carina x x

 

[germain]

Hello Sylvia,

So sorry re the sleep deprivation. It's absolute h*** on earth !

As you know I don't post often anymore but thought I would pop in just to give you a possible teensy advance warning - based on my experience with Mum.

Your paramedics sound like saints BUT the second time I had to call ours out when Mum was still at home and there was only me to help at the time, I was told " We are NOT a domestic service",
" if she's not injured give her a pillow and blanket on the floor and let her wait until the morning carer can help you", "if you call again you could be classed as a nuisance caller as you're taking away the service from a medical emergency which might happen"

I was very lucky in that I had full support of other family members most (99%) of the time but it was the falls that led us to consider extra sheltered accomodation ( a mistake) and then full care.

I know you haven't the room for a hoist but is there any capacity for cling bars etc ? Is Dhiren only unable to stand when you are there ? Just saying this because our Mum presented as soooo weak but once when I had to leave her for about 30 seconds managed to climb out of the bath with no assistance !! She said it was getting too cold for her !!
Also remembering that when in respite Dhiren didn't seem to get out of bed ? Or maybe he did but got himself back in as there was no-one around to give him attention.

At one point we got Mum a reclining chair but she could never work out how to get out of it so just yelled blue murder for help so it may not solve your lack of sleep problems.

Think before I go I need to add that the paramedics who came out to Mum just before she died were absolute angels - so much so that we wrote a special letter of thanks to Headquarters. Maybe we just got a couple of grumpy tired ones earlier !

Best regards
Germain

 

[sad nell]

Sylvia, so sorry Dirhen is at this stage, reading your post was like reliving 3 years ago , i had forgotten the horrors of this continual need to get out of bed like a compulsion ,Trev would not put his head on the pillow, if he did , he would instantly get out of bed, straighten the bedspread and get back in, continousley, i felt i was the one going mad, it stopped after about 3 months, never found the reason, but i think i was a close as i have ever being to caving in. and i feel you are at that point now too, i got emergency respite the same day that social worker saw how vunerable we both were, can you get some help today, another night like last night is just too much to face, till you have some sleep and peace for a while, please ring now. love to you both Pam

 

[Lynne]

Dear Sylvia, please (if you haven't already) ring Terry. If you can't get hold of him, ring someone else
- maybe the c.h. where Dhiren went for respite last month, to check if they would have a room for him at very short notice IF you decide it is needed.
Quite apart from the mental strain and pain, I feel you are both at risk of physical injury trying to struggle on like this.

Love xxx

 

[Grannie G]

The carer said he was unusually restless today, so it`s now not only during the night, but the day too. He sits in one chair, gets up and goes to another gets up and continues to play musical chairs and then goes on to play musical rooms.

The carer put some music on for him which helped calm him, but only for 20 minutes. I have some on now , and although he seems happy to sit and listen he keeps getting up and going from chair to chair.
So I don`t think a recliner would help. Something compels him to keep moving.

He also complained the quilt was `too clumsy` so I`ve bought a lighter weight which we will try out tonight.

I`m lucky he has no swellings so it isn`t a priority to keep his legs up.

I`m waiting for a new appointment for a home visit from my CPN and Care Manager, after the one that was arranged was cancelled because of the snow. They will be able to tll me what I can have in the way of night sitting etc.

I feel the time is right to make a decision, but because I don`t want to, I`m pussyfooting.

Germain, the paramedics are wonderful. We were advised at our relatives` support group to phone for help if the need arose, so once again, I suppose it depends where you live.

 

[Lynne]

I`m waiting for a new appointment for a home visit from my CPN and Care Manager, after the one that was arranged was cancelled because of the snow. They will be able to tll me what I can have in the way of night sitting etc.

Oh dear, yes you are pussyfooting aren't you.

Forgive me for being pushy, please, but you need to be CHASING for that appointment; if this were someone else's thread, that's what YOU would be saying to them.

This situation is getting urgent, honestly it is. Worryingly so.

Love xxx

 

[sue38]

Dear Sylvia

It’s clear that you need help, but I know how difficult it is to think clearly when you’re sleep deprived.

If it helps I see your options as follows:-

1. Dhiren goes into permanent residential care. Only you can decide if you have reached that stage. I doubt anyone on TP thinks you haven’t tried more than most to keep Dhiren at home, but it’s not what we think that matters. Do you feel that this is a stage of coming off medication, and that things will eventually settle down? Or do you feel that this is a permanent deterioration?

2. Dhiren goes into emergency respite. This will give you time to catch up on sleep and perhaps see things more clearly. You know now that Dhiren will accept respite. If that respite becomes permanent, then so be it.

3. Night carers. This too would let you sleep, but you would still have care during the day. I know Dhiren has been easier during the day, so perhaps this would work, or do you feel you need a complete break? Would this become a permanent arrangement? i.e. night carers so many nights a week, leaving you to care on other nights.

4. Carry on as you are. I’ve put this is in, but don’t really see it as an option.

I'm sorry if this post falls under the category of 'stating the bleeding obvious' , but sometimes it helps to put things down in black and white.

 

[DeborahBlythe]

Well written Sue.
Sylvia, I know you may have other things on your mind this week, but somehow it seems that the most urgent thing is to find a way through the problems with Dhiren which will give you the most support.

You are the person most affected by Dhiren's condition. I don't even get the impression that Dhiren himself is particularly as stressed as you are.

You are very dear to all your friends on TP. I hope that you can reach a decision that will help you to find some peace and confidence in the future. I think we are all beginning to worry about you.

No advice except to urge you to think about yourself first.
Love xx

 

[Grannie G]

Terry and my Care Manager are coming on Friday at 10am. I will give myself till then to decide what to do, stretch it to the limit.

Thanks for giving our problems so much thought. I really do appreciate it. Even if I don`t appear to be listening to advice I`m really taking in everything you all say.
In my heart I think the time has come for permanent residence, and if not now, in the very near future. But I just want to see if I feel the same tomorrow ........and Thursday....... and Friday.

I have never felt so indecisive in my life. It`s such a big step.

 

[susiesue]

In my heart I think the time has come for permanent residence, and if not now, in the very near future. But I just want to see if I feel the same tomorrow ........and Thursday....... and Friday.

I have never felt so indecisive in my life. It`s such a big step.

That is exactly how I feel - one day things go well and you wonder how you could possibly have thought about permanent residence. Then you have a day/night from hell and have no doubt that this the correct way to go.

I'm right there with you Sylvia.......

Love

 

[Grannie G]

Well when you decide Sue, let me know.

Quote Deborah Blythe
I don't even get the impression that Dhiren himself is particularly as stressed as you are.

I think Deborah has hit the nail on the head. Dhiren is not as stressed as I am. Yes he has dementia, but he does exactly what he wants to do , at this stage in his life, and I pick up the pieces.

How has David been after respite Sue? I`ve been waiting for your post.

 

[susiesue]

I am just going to post now Sylvia

 

[Izzy]

Will be thinking of you over the days leading up to your meeting on Friday, Sylvia. Take care. Izzy x

 

[Mo_N]

Oh Sylvia, you sound so exhausted it's no wonder you can't make decisions. I've only had a few days disturbed sleep & I'm like a zombie so I applaud you for coping as well as you do.
I sincerely hope that you have a constructive meeting on Friday , pity they couldn't get to you before though. Sue38's idea of writing down the options seems a good one to me. Perhaps writing the pros & cons against each would help get you see things more clearly.
Wish there was something more I could do....

Sending a hug.
Mo x

 

[Mameeskye]

Sylvia

((((Hugs)))

I well know those tears that come with exhaustion. It doesn't take much with sleep deprivation to tip you over the edge does it?

Whatever decision you make with regard to Dhiren's care will be the right one. It may be more night sitters, respite or permanent care but it will be right for you and Dhiren. If you do decide that the time has come for the permanent care remember that this may herald the start of a whole new more loving relationship for you and Dhiren, as you get your energy back, can spend time free from worry and also be able to use your strength to do more enjoyable things, like a stroll with the wheelchair in the spring sun, a visit to the bandstand or the beach, secure in the knowledge that if the day tires you out you can go home and sleep, with Dhiren safe.

Wandering is an unfortunate side effect of dementia. In the latter days Mum would walk for hours, though she was never quite sure why. She wasn't unhappy, I think it just reflected how she was when younger in that she rarely sat still and was always knitting or doing house work, etc. Dhiren will be walking for a purpose, but won't remember what it is from minute to minute and that is very exhausting for you when he is at risk of falling.

Thoughts are with you both and Paul. You will do the right thing, for everyone, not just Dhiren.

Love

Mameeskye

 

[Vonny]

Dear Sylvia,

One thing to consider if you go for a respite option, if Dhiren is, as you say near the point of needing permanent care, would it not be more sensible to just go for the permanent option now. That would avoid Dhiren being chopped and changed around, and if you leave it until the very, very last (which I suspect you will!) your own health is likely to be poorer than now.

I'm not saying this to try to persuade you to go for the permanent care option, I just think it's something you should consider. We all care for you so much and want the best for you. xxx

 

[Skye]

If you do decide that the time has come for the permanent care remember that this may herald the start of a whole new more loving relationship for you and Dhiren, as you get your energy back, can spend time free from worry and also be able to use your strength to do more enjoyable things, like a stroll with the wheelchair in the spring sun, a visit to the bandstand or the beach, secure in the knowledge that if the day tires you out you can go home and sleep, with Dhiren safe.

Beautifully said, Mameeskye!

Sylvia, you have coped with more than (probably) anyone else on this forum. You must be exhausted.

Dhiren was fine in respite, and would probably be fine in care. You on the other hand are not going to be fine if this situation carries on.

Please think carefully, about Sylvia as well as Dhiren. You have already gone far beyond the call of duty.

Love,

 

[Canadian Joanne]

Everyone else has said what I am thinking.

Vonny in particular has a very good point:

One thing to consider if you go for a respite option, if Dhiren is, as you say near the point of needing permanent care, would it not be more sensible to just go for the permanent option now. That would avoid Dhiren being chopped and changed around, and if you leave it until the very, very last (which I suspect you will!) your own health is likely to be poorer than now.

It is a very hard time for you now but you MUST consider the long-term effects on your health.

On another note, I remember that Paul said he sees the two of you as a 'unit' but that isn't fair to either of you. You need to make your decision based on what is best for the two of you. I think his statement is part of the wishing Mum and Dad are as they were when the child was young.

Love,

 

[ROSEANN]

Dear Sylvia.
Sorry I have not posted before.
Like you I am having a bad time and so I know how you feel.

John has been in respite and was to have tried a new drug when he came home but the doctor observed him while he was in respite and she has decided that he needs full time care.

I was close to giving in as I am worn out like you and even now have days when I think I can cope but those days are getting fewer.
It is hard but like the doctor told me we are entitled to a life as well.

I will be thinking of you.
Take care
Love Roseann xx

 

[Grannie G]

The decision is made.

I have realized I cannot provide for Dhiren`s needs by myself.

1. There is a safety issue. If I`m overtired I`m less compassionate towards him which could put him at risk. He can be watched throughout the day but not throughout the night.
2. Even with all the help I`m getting I still have sole responsibility for Dhiren 21 hours a day during the week and 23 hours at the weekend.
3. If night sitting was arranged, at best I`d get two nights a week which would leave me with the other five.
4. Dhiren was happy in respite care and I was happy with the home.


Paul is here to watch the football. Dhiren became very tired and needed to go to bed. Paul witnessed the procedure and was shocked. I put Dhiren to bed and went to the living room to talk to Paul. He is 100% with me about residential care and said I should make the decision and stay with it. Things will not get better and we don`t want to wait for a crisis.

While we were talking, we heard movement in the hall. Dhiren was up. He sat with Paul for a few minutes and then Paul came to tell me Dhiren was again falling asleep and very very tired. So back to bed he came again. I stayed in the bedroom with him.
After less than five minutes he was up again and is now sitting with Paul watching the football.