I'm back and I am really not good

[Helen33]

I am back. The notes in the care plan read like a disaster Alan is worse than ever (or is it because I am seeing him from fresh eyes?) - I don't think so. I have an email from the lady from the AZ Soc and another from the Social Worker and it seems there is much talking to do and much work to do and I really feel I cannot cope.

Now I've had a break I realise that out of this situation I am 'just me' and am not at all depressed. In this situation, I feel I am on the verge of a breakdown and tears are always just under the surface.

I don't know what the answer is and I know that nobody else will know either. I suppose I will need to set up a meeting. I really need support because the base reality is that I cannot continue alone. I need actual support and not more stress that can generate from trying to get support and I really am not able to see what is realistically possible.

I think I will try to cope with today and spend the time trying to get Alan back on an even keel and just gently getting the house back in order from having so many sitters and a husband who looked so unkempt and uncared for by the time I got home. Apparently, the night sitter had to call the Manager out to him and it seems that no one really understood his needs I'm not sure about this latter bit because I haven't actually spoken to anyone but from reading the care plan notes, this is the impression that I have.

Love

 

[Grannie G]

Oh Helen this sounds awful. Definitely not what you want from Respite.
Idon`t know what to suggest. Perhaps the only thing to do is to go along with the suggestion of more meetings and let those who are supposed to be helping you see what a state you are in.
Love xx

 

[milly123]

helen so sorry everything didn't go to plan the last thing you needed on your return restbite sounds great but from my own expierance we seem to end up picking up the pieces afterwards hope you get the answers your looking for best of luck mlly

 

[BeckyJan]

Dear Helen:

I know not what to say! Having my lunch now and trying hard to think of a solution for you but as you say

and I know that nobody else will know either.

I agree with you and Sylvia with more meetings and more discussion - maybe then there will be some solution. It is right, you cannot continue unaided. I hope at meeting times you do not put on too brave a face - some of them should see you 'cracking'.

The reality is that no one can understand and care for Alan as you do, but maybe the standards need to be dropped a notch in order for you to have some relief. I know you will not like this but I care enough for you to be kept strong.

Love Jan

 

[susiesue]

Oh dear Helen I amso sorry to have had to come back to this - your thread sounds so desperate (I recognise desperation)

I do hope you manage to sort things out ...

Thinking of you

Love

 

[Norrms]

Sorry

Hiya Helen, so sorry to hear about what you come back to, as i know has been said, maybe a meeting with all concerned will help you to work something out, i hope so, you and Alan are in or thoughts, best wishes, norrms and family xxxx

 

[gigi]

Dear Helen..

I'm so sorry that things weren't so good on your return from your respite weekend...something obviously went wrong..and I do hope you're not blaming yourself in any way.

Perhaps when you've had a chance to read the carers' notes again, and talk things through with people, some sense can be made of it.

It really is a learning curve...and sadly what worked well once may not work well the next time. But similarly, if things went wrong this time, it doesn't mean they'll go wrong next time.

Alan is so used to having just "you" to care for him..with a sitter for a couple of hours...but you are generally there at the "important" times. I know you had a few problems with the respite sitters this time, and things had to be changed at the last minute. Is it possible that there were too many "comings and goings" this time ...?

Whatever the reason..I have every faith that you'll get to the bottom of it, and sort it out. Stay strong, my friend..one more step along the world we go..


Love xx

 

[Helen33]

Update

I took a deep breath and phoned the Social Worker and she is going to ring me when she gets back from lunch. Our Care Manager from Crossroads rang and asked me how I was. I said I was not at all good and was really quite worried about myself. At this point I was managing to hold myself together. She wanted to sort times out for future sits and I just could not cope. I had papers all over the desk - I felt I could not take in anything and I told her I thought I was really on the edge of a breakdown. The tears just fell and she then experienced how fragile I was.

She asked whether I ought to call the GP out and I said 'no' because I need to get things sorted and the GP couldn't do anything to help. I do not need anti-depressants. I said I really needed a meeting with the SW, Crossroads, the CPN and myself so that I could find out once and for all what was realistically possible. I keep being told that what I am requesting is perfectly reasonable but somehow it is not working.

I told the Care Manager that I'd read the notes in the care plan and that there were clearly problems. She said she's been called out and when she arrived Alan was immediately able to follow her instruction and he was immediately no problem I explained to her that it was clear that Alan felt safe with her and he couldn't have felt safe with the night sitter. She then told me that the night sitter was a very quiet woman who was offering Alan all sorts of choices like "would you like to go to bed now?". Alan would not understand this and if she persisted he would feel very unsafe because she was not taking control and helping him. So really it was a repeat of the trauma Alan has been having with the sitters - those that were unable to contain him and communicate properly in ways that are appropriate for Alan Getting this information helped me to clearly see what it was that had happened and because the Care Manager was involved herself, I was able to explain it to her in ways she could understand. She came in and took control and Alan was immediately sensing safety again. It is that simple!!! She is now very keen to set up a meeting and we are hoping for it to be this Friday morning. I will need the CPN to confirm and the SW.

I am finding that TP is helping me to take things step by step in my thinking process and I so much appreciate your comments because it helps me to see things more clearly. Jan, just you mentioning whether I should drop the standards a notch and I have to say that I can't because I am requesting the minimum standard requirements for Alan to feel safe. I do not see this as an optional extra but a necessary requirement. Alan not feeling safe leads to severe agitation, confusion and fear and it is so easily interpreted as a decline in his condition rather than the effect of inappropriate care!!! He has the right to feel safe whilst it is reasonably possible. No one yet has said that this is unreasonable. Just you asking the question has helped me to be prepared for other people that might be thinking the same thing and helps me to be prepared with a clear enough response. Thanks everyone.

 

[stikwik]

hi helen

gigi seems to have a good feel for what you've gone through. what you describe sounds exactly what i'm dreading. basically there's no-one better than us to care for our loved ones, but what happens when we can't manage sometimes/always/enough? i was only thinking the other day... i keep thinking i'll have a 'choice' about if steve goes into care, but another person said it usually depends on the physical sizes of us, ie i won't be able to lift steve so if/when this happens, it won't be about what i'd imagined (ie when he doesn't know me or similar extreme).

from what you say, the only thing that comes through to me is what you always say - if you're not ok, then he won't be ok (in brief). so all i can hope and pray for you is that you get the help/info/options that both you and alan so deserve, and may we all do so in our own ways/situations.

i always think - there's always an answer - it's just finding it, and often needs the right 'question' first which isn't always clear.

xx

ps i typed this as you were typing yours helen so may not be as relevant (i'm about to read it now but wanted to edit this first)

 

[gigi]

It's good to hear you sounding positive again, Helen...

It really does seem to be the calibre of the sitters that's the issue. So perhaps now is the time for them to start looking at their staff with a view to who will be suitable for next time.

Love xx

 

[julieann15]

Dear Helen
I really don't know what to say but wanted you to know I am thinking of you

Love and hugs

Julie xx

 

[sad nell]

helen love dont know what to say, but if i can be of any help i will be on here late this evening love to you both pam

 

[Izzy]

Just adding my own thoughts for you here. It must be so hard for you. I hope a meeting sorts something out. Take care. Izzyx

 

[Linda Mc]

Oh! Helen do hope something is sorted out and soon.

Take care

 

[imac.girll1]

I know how you feel !

(((((((((hugs))))))))))

 

[hazytron]

Oh dear Helen, I am so sorry to read of your difficulties. You must be wondering where the benefit has gone from your much needed break. I am in the thick of so many problems with Mum and don't feel I can offer any useful suggestions.(Others are so much better at it than me)
I am sending lots of hope and strength, down the wires, to reach you in the morning, if not before!
Thinking of you
Hazel

 

[HelenMG]

Feeling Safe!

Dear Helen,

Quote (still don't know how to do them properly!) "I explained to her that it was clear that Alan felt safe with her and he couldn't have felt safe with the night sitter. She then told me that the night sitter was a very quiet woman who was offering Alan all sorts of choices like "would you like to go to bed now?". Alan would not understand this and if she persisted he would feel very unsafe because she was not taking control and helping him. So really it was a repeat of the trauma Alan has been having with the sitters - those that were unable to contain him and communicate properly in ways that are appropriate for Alan Getting this information helped me to clearly see what it was that had happened and because the Care Manager was involved herself, I was able to explain it to her in ways she could understand. She came in and took control and Alan was immediately sensing safety again. It is that simple!!! "

Oh Helen, how true this is. You have taught me much tonight. It IS ALL ABOUT our loved ones FEELING SAFE!

xx
BIG BIG Hug
Helen

 

[DeborahBlythe]

Helen, sending you good wishes and hugs and hoping you are feeling less stressed. Love Deborah

 

[Scottie45]

Dear Helen

So sorry that when you came back things had not gone to plan,glad you are having a meeting with all concerned in Alan,s care,i hope things get sorted out for Alan and you.Sending you a big (((hug)))you take care Marian xx

 

[Helen33]

Thank you for such wonderful care and support.

I have felt much better today and Alan is looking much better and seems to be more stabilised. All the sitters he has now are good ones and the couple of bad ones are gone!! We have a meeting arranged for Thursday at 11am and everyone is now very keen for this meeting especially as the Care Manager has now had first hand experience of what I have been telling her as she was called out during my weekend away. This was a blessing in disguise but it is a pity that my poor Alan has had to suffer in order for his needs to be properly understood.

Love