someone up there doesn't like me!!

[Bronwen]

Hello friends...sorry to say Trevor back in hospital again, having had a very bad weekend of climbing into wardrobes, paddling in the toilet etc etc. think it may have been constipation again (despite all the prevention medicine) and to top it all I have injured my back trying to prevent him falling and so had ambulance and dr out to me last Thursday!! doesn't rain but it pours!

The hospital won't discharge Trevor until I am fit and they happy with him, so don't know where all this is going to end.

Not getting much help from SW so have decided to go private and pay for help..still cheaper than going into care. I met the lady who will be our main carer and she is lovely so am trying to arange this before he comes out, or he will go into respite for a week to give me some breathing space.

I am being granted 10 hours direct payment, but that has taken 4 weeks so far to be put in place and apparently I can only use those hours as a sitting service, not help with showering etc.

I am constantly being told I should now consider permanent care for Trevor, but having had a few really good days with him last week, I don't feel I can give up on him yet but I have to admit I am getting so weary with all the paperwork, telephone calls, visits etc.

I think our motto ought to be "onward and upward"

On reading your posts, I know you understand how I feel,and that helps tremendously. thank you

love
Bronwen x

 

[BeckyJan]

Hello Bronwen:

What a difficult time you are having. I think you are wise to try private help and I hope that works well. I also paid someone 1 day a week to give me a break but this was an interim period before permanent care became necessary. At least I tried for as long as I could, just as you are doing.

Have you been offered regular respite?

So 'onward and upward'

 

[Bronwen]

thanks Jan..yes apparently 6 weeks' respite has been costed in this direct payment package, but I probably won't have built up enough credit for a few months...don't know how the heck all this works..hence not relying on it. Thank you for understanding how I feel..Iknow it will come to permanent care soon, but not yet hopefully.

love
Bronwen x

 

[Christin]

Onward and upward I hope you feel better very soon! I wouldn't be able to cope without the regular respite. It is something to look forward to. xx

PS sorry have just read your last post, we thought we had direct payments for respite but it was cancelled the day before respite began as SS seemed not to approve of the CH we chose, saying it was unsuitable for FIL's needs. We have chosen to use the CH of our choosing and argue for the payments. Sorry, don't mean to burst your bubble but do take care. best wishes.

 

[miss cool]

HI Bronwen i am so sorry to hear you are haveing so meny problemes, i will send big hugs and healing thought to you both.



love miss cool.xxxxxxxxxxxxxxxxxx

 

[jayne-b]

Onward and upward indeed, but it would not be so hard to keep pushing on if the red tape and paperwork was not such a minefield, a drain on most carers depleted reserves of energy and patience.

I hope your back resolves and the help you get enables this.

I hope your main carer turns out to be a gem and you can have Trevor home for some good time yet.

take care
jxx

 

[Grannie G]

Please be careful Bronwen.
My back suffered when Dhiren was home, after 30 years of keeping trouble at bay. It has taken me quite a while to recover.
If you do too much bending, especially helping Trevor dress it will put even more strain on you.
I know you don`t need me to tell you this but once DP are processed you should be able to get additional time for help dressing and undressing.

 

[PamD]

Dp...

I had to think twice what "DP" meant in this context, even having just read it in the posts above (too late, too tired), so have now added "DP - Direct Payments" to the list of abbreviations. Pam

 

[Bronwen]

Thank you everyone and thank you Sylvia..I was wondering if the 10 hours sitting service could be increased to help with trevor's care. I asked the lady organising the money etc.and she said no, the ten hours were purely a sitting service, so I guess I go back to her and ask if more hours can be added for care..then the whole process will have to be re-evaluated and so it goes on..I just despair, but will keep at it.

Love Bronwen x












t it.

 

[Contrary Mary]

Dear Bronwen

I am so sorry to read of the trials that you are facing at the moment. I do understand how much you are trying to keep Trevor at home, but you do need plenty of help to be able to attempt it.

With Mum now back at home with an increased care package, we shall be moving to an individual budget and my respite is yet to be finalised as we are waiting for the doc from CMHT to see Mum and to see if she will be fit enough to return to the day centre.

One thing that strikes me about your situation that we are discovering is what are Trevor's needs and what are yours. I have not up to now thought about it that way as I have always looked on things as help for US. It might therefore be that your needs have been assessed, and you have been given the hours. However, Trevor's needs for help with washing and dressing would need to be separately assessed?

Just a thought. I do hope that you can get things sorted out soon as it would be one less thing to think about. Wishing you well.

Mary
x

 

[sad nell]

Bronwen just hope you can get a good care package sorted, it make the difference between being able to cope and not, I resisted help for far too long, but now these girls really have become such a good support to me and their care and consideration for us both has been what has allowed me to keeep Trev home, am a touch worried about the funding but shall worry about that when i have too.hope it goes well with your private carer and you get a much needed break. thinking of you both Pam

 

[Bronwen]

I am so very sad..I have had to make the decision for Trevor to go into permanent care..how I hate that word "permanent". The Consultant at the hospital has told me Trevor has had no infection to cause this latest drop in his dementia and she fears he is now slipping down fast. He doesn't know me, insists on walking around and around, moving tables and chairs and is generally difficult..I hate seeing him like this and just wish I could bring him back to me, but I feel I have had the stuffing knocked out of me and with a painful back and now a heavy cold, I just feel I can't take much more.

I know i will stronger when I am well again, but I am being told it isn't fair to Trevor to keep bringing him home, only to have to ring 999 abd have him admitted again.

My family and I have found a lovely home, only just opened and we have spoken with the staff and chosen a bedroom so this Tuesday he is being discharged from hospital and taken to the care home. I can't write these words without a palpitation and am dreading next week..I hope to God I am doing the right thing.

The financial side is worrying, but as we will be self funding until all his savings run out, I can't claim anything but Trevor has always been very careful to make sure he had money for a rainy day so I feel this is my way of saying thank you.

Oh how I hate this disease..I can't believe all that has happened these last few months.

As usual it is so good to put mmy thoughts into words.

love
Bronwen x

 

[Sam Iam]

Bronwen, I hope and pray Tuesday goes well for you.

Sorry to say this but I think it is terrible that a gentleman who has been careful and saved for you and his future should have to fund his care with these savings. There should be better care for our folks.xxxxx

Love and hugs to you and yours. XXXXXXXX

 

[cragmaid]

You don't know me but I feel so sorry that you are having to make this choice. The only consolation is that if you get the chance of some rest at night it may ease your back problem and help you to face the next steps of your journey together through this life. Take care.

 

[susiesue]

I am so sorry Bronwen and I understand exactly how you feel - I felt the same when David went into full time care.

However, there comes a time when it is just impossible to continue to care at home and that was how I was last April - seems like a lifetime ago now.

I do hope Tuesday goes well for you - it will seem strange to start with but I think you will realise that it is for the best once you see Trevor settled in.

Good luck.

Love

 

[sleepless]

Bronwen, I really sympathise with how you are feeling right now. Sometimes the 'right thing' feels 'wrong', even though we know it is for the best.
This is the really cruel part of dementia care.
I have been through this first with my mum, now my dad, and who knows, may have to with my husband (he has AD.)
Please believe me when I say I feel so sad for you.
But try to see it not as an ending of your care, but a change in direction. You will be able to contribute so much still to Trevor's life, but without the physical drain on your health. I know it's hard, I've not faced this with my husband, only my parents, so can only imagine how you feel, but please, stay strong, be positive, don't give up now, you are needed.
Thinking of you, and praying that you feel better soon,
sleepless

 

[lin1]

Dear Bronwen
You have done so much , cared so much.

But due to what this disease can do to our loved ones their comes a time when a difficult choice has to be made.

Im sorry you have had to make this disicion , but in truth you coudnt carry on the way things were could you

I hope things go smoothly on tuesday, that your Trev settles quickly . And you recover quickly too

 

[JayGee]

Hi Bronwen
My heart goes out to you It's so awful for you - I went through this torment 4 and a 1/2 weeks ago.
My plan didn't work out as Sidney was thrown out of the lovely home I chose and we're still waiting
for the psycho-geriatric consultant to make up his mind where he will end up.
The truth is I couldn't manage at the end but my heart is broken at the thought of not being with him.
It feels as if my child has been taken away from me.
This week he has settled down a bit and I had a lovely visit last night
and he didn't care when I said I am off home now and the nurse took him off to bed.
I am getting uninterrupted sleep and the chance to go anywhere I want
but at the moment I have lost my purpose in life!! It will take time!!
I know what you are going through!! Sending you love Bronwen
June x

 

[Izzy]

Oh Bronwen I am so sorry to read your news. I know it's for the best but it must be so hard for you. I will be thinking of you both on Tuesday. xx

 

[Grannie G]

Dear Bronwen

Like Sue /Susiesue, I have been in the same position you are in now and it`s not good.

But I must tell you Bronwen, it can get better.

I know it isn`t better for Sue, because David has taken such a terrible turn for the worse, but it`s better for me because somehow or other I have my lovely contented husband back again.

It really is the luck of the draw but however you feel, full of sorrow and sadness, wishing it could all be different, I `m sure deep down you know the alternative would only be detrimental to your own health and you would end up still being unable to keep Trevor at home.

Once Dhiren was settled and I had recovered my health and strength, I did consider bringing Dhiren home. The SW said it would be cruel to him as he was so well settled and would be disrupted. It was a pipe dream, I realize now and I am accepting and just grateful he is in a very good home, being well cared for and we have quality time together.

I wish the same for you Bronwen and will be thinking of you Tuesday.

Love xx