What a difference a year makes

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Dear Mary Ann

I`m so sorry you had such a `nothing` visit. It`s difficult to know whether Peter`s indifference was deliberate or just the way he is at present.

I`m sure it wouldn`t have been any better if he`d been angry and resentful.

He`s there for a reason, because his behaviour at home had become unmanageable, so all you can do is watch and wait.

It`s no help to you at all, but I hope it doesn`t get you down too much.

Take care

Love xx
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Dear Mary-Ann

I'm sorry your visit to see Peter was distressing for you; I suppose "it could have been worse" is what springs to mind!

It's very early days as yet, & you are both going through a period of adjustment aren't you. You to a new phase of life at home, and Peter perhaps more so as I expect his meds are being adjusted & refined as he is assessed & observed.

Best wishes
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Dear Mary-Ann, I'm sorry your visit wasn't totally successful. It's so upsetting when you get no response, but at least Peter wasn't aggressive. Let's hope they manage to get the medication sorted out soon. It's a good job you didn't take the children, it would have upset them so much.

Thank you for letting us know, and I do hope things improve for you soon.

Love,
 

bel

Registered User
Apr 26, 2006
757
0
coventry
sending a big bag of love to you

mine and everyones love and thoughts are with you
try to hang on in there
love bel x
 

1234

Registered User
Sep 21, 2005
43
0
bradford
know the feeling

good morning westie, hope you managed some sleep, when my husband was first admitted i could not sleep without him at my side but a good friend bought me a large bolster to cuddle upto and somehow it was comforting. Trev on exact same medication, on assesment ward 6 months, must have walked hundreds of miles of hospital corridors as trev would not stop pacing, the initial reief to be removed from the agression was soon replaced with what have i done in letting him be placed in there, it was a lovely place, with kind staff but he deteriated so rapidly, no speech. doubly incontinent in a very short time, they wanted to place him in emi home but have brought him home , ebixa has given me alittle of trev back for time being, he can be so loving one min , agitated next with no trigger, how you manage with your daughter to consider , i do not allow my grandson to visit late afternoon when i know trev will be at his worst, so how you manage to shield your daughter i cannot imagine, my children are so ditressed to see their dad behave this way and they are adults. one thing that helped me was to go toyoga & pilates classes , ithink that has kept me fairly sane ( though others may choose to differ), i have ended up rambling again and as a i finger typer takes some doing, will be thiking of you visiting today, do something nice just for you afterwards, and hope your daugter has a good laugh again today with her mum
llove Pam
 

Westie

Registered User
May 14, 2007
155
0
63
South East London/Surrey border
I'm just so sad

Peter's been at the assessment unit for a week now. I thought that I would take this in my stride, but it has really got to me. Thought I would catch up on sleep, but I am sleeping even less now and feel constantly exhausted. Thought I would get all my 'paperwork' up to date and even tidy/clean the house - I haven't done anything.

Peter looks sadder each time I visit and I just cry all the way home. If I think of him, I can only see his sadness and I cry all over again. I know home life had become impossible as it was, but this is just so awful. I want him back so desperately - but I want the old Peter. It was our 20th wedding anniversary yesterday but I didn't mention it to him. The date meant nothing to him.

Nothing seems to have happened during this week. He is still on exactly the same medications he went in with and his behaviour/anxiety is still just the same. Although it is a secure unit, he has managed to 'escape' for a few hours by following a visitor out through the double doors. No one noticed until he rang the bell to get back in later on. How can that happen??? He could have gone anywhere - no i.d., no cash, no phone. Yet when he was telling me what he did there was a tiny gleam in his eyes and part of me thought - 'good on you'!

He thinks he is coming home next week. He may be for all the information I have been given. I have visited at the weekend and during the evenings and there are different staff on duty then. If I ask for information I'm told they will be in touch when they have anything to report. I phoned our CPN today as I heard she went to visit Peter on her day off. She said she didn't want him to think she had forgotten him. I was overcome (again) by her kindness and have asked her to find out what is happening to Peter. She promises to get back to me soon and I'm sure she will.

If he was bad enough to be admitted, how can he be sent home again without anything changing? Was it just to give me a break? If so, it hasn't worked. I'm in a much worse state than last week and really panicking about the future. I feel I've let him down so badly by not being able to provide enough time just to try and do things with him. One of his brothers told me to cancel everything else I do and spend all my time taking Peter out to keep him entertained. He said I won't be able to do that for Peter soon. Maybe he's right, I don't know.

Sorry I've rambled on here but it really does help just to get it down in words. I wish so much that all this pain could just go away. It won't - I know - but your kind words and advice have helped me so much and I thank you all.

Mary-Ann
xx
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
Dear Mary Ann, so sorry that you feel so low.

Can understand and just wanted to let you know I am thinking of you.

Wish I had more, some wise words of advice maybe. Just love and hugs coming your way.
 

jackie1

Registered User
Jun 6, 2007
238
0
Cheshire
Oh Mary-Ann, this is such an awful time for you. All I can really say is that you are in my thoughts and prayers.

I do think that your brother-in-law is being rather unreasonable and short-sighted. May I suggest that you say the same to him i.e. give up everything thing that he does. It might make him think an bit before he makes such unsupportive comments. You might also ask him how he thinks you can do that and raise your children.

Sorry, I know I'm ranting a bit, those sort of comments hit a raw nerve with me. We all do the very best we can and to suggest that we should somehow do more in simply not acceptable.

(((((HUGS)))))

Jackie
xx
 

j.j

Registered User
Jan 8, 2007
91
0
hello westie
once again i find myself relating so much to your posts although it is my mam in assesment and not husband, how very hard it must be for you. I certainly know where your coming from on the information front, i feel a bit like i have looked after this person for seven years knowing every single thing about them and suddenly i don,t even need to be consulted about anything, we are fourteen weeks down the line and still no further forward. I must say i,m rather shocked that your husband was able to get out but thankfully he was ok.
j.j
 

MaggieH

Registered User
Apr 4, 2007
6
0
Australia
Dear Mary-Ann

I have found it amazing that there are so many people going through the same ordeals. Luckily I do not have children at home. My husband is 63 and was diagnosed 3 years ago but started the symptoms in his fifties. I have not got as far as you he is not on a lot of medication and he does not go to respite although I will have to get to that stage.We have family but they have children of their own and busy lives some of them cannot even accept it all.
I hate seeing him as he was disappearing in front of my eyes.
I can only wish you well and say you are not on your own
All the Best
MaggieH
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Dear Mary Ann,

At this moment, my husband is sitting in a chair, staring into space, having refused his morning medication, and having been to see our son, who is at work, to ask for help to get away from me.

There is nothing I can do to help him.

I know how hard it must be for you to feel you have abandoned Peter to the assessment unit, but your life was becoming impossible whilst he was at home, and at least there is a chance he will get some help where he is.

Perhaps he is under observation for a while, and that`s why he`s on the same medication. If he is under observation, there`s no excuse for no-one realizing he had `escaped`.

I doubt very much that he is coming home next week. I`m sure you would have been informed if that were so. It is probably wishful thinking on his part.

Your CPN sounds a gem. Let`s hope she`ll be able to find out what`s happening.

Please don`t feel you`re letting him down. You are only doing what you have been advised to be the best for him.

Take care

Love xx
 

Westie

Registered User
May 14, 2007
155
0
63
South East London/Surrey border
what a difference another 4 weeks make

Peter has been in the assessment unit for 4 weeks today.

First week, no change in him at all and very, very restless. Medications stayed the same as i suppose he was under observation. Lost quite a bit of weight as wouldn't stay in one place long enough to eat a full meal. 'Escaped' several times by walking out with other visitors but happily returned later on after having a walk around the hospital grounds.

Second week, more of the same except this week he managed to escape by climbing over a 6 foot fence in the garden. Did this over and over again then would run to the front of the building and lean on the buzzer until someone let him in. He was a real challenge to the staff who were dealing with mainly elderly, fairly immobile people. Had a case conference where the consultant admitted that he was amazed at the level of Peter's anxiety, restlessness and agitation. He didn't interact with anyone at all and spent every waking moment walking - usually in the garden. He advised that he was starting anti-depressants & diazepam and stopping the haloperidol. He hoped that would help and expected him to stay for another 2 weeks before coming home.

Week 3 saw Peter very subdued. His walking and speech were very slow and long pauses in any conversation. Obviously the medication was sedating him BUT he still didn't stop walking. Wouldn't sit down. Each time I visited I had to walk with him in order to spend any time with him. We were allowed to walk in the very large grounds of the hospital so I started taking our dog there and we would walk for a couple of hours. Hardly any conversation.

Beginning of week 4 I was asked to attend a meeting today to discuss his discharge arrangements. Spent last few days writing notes/lists/worries about how we would cope. No day care etc. Where would he walk, what will happen when I go to work? Went in today ready for a fight.

Consultant, 2 registrars, 4 ward staff, OT, SW all seated around table. Peter not included which was a first. I was actually asked how I thought Peter was so I told them my views and observations. Subdued, less anxious but still so, so restless and unable to do anything. No reading, TV, radio, conversation. I was then asked how I thought I would cope at home. Bit of a silence and I said I had no idea - I wanted them to tell me how to cope.

Then they said it. They didn't think I could cope. Didn't think I should cope with a young family. Didn't think Peter would be able to return home again. I was/am stunned. I went expecting a fight for a few hours day care and was going to ask them to keep Peter there until the weekend so I could have half term with the children. I never, never thought of this outcome. Then lots of talk about the difficulty in placing him anywhere suitable because of his age and extreme behaviour issues. None of them knew anywhere they considered suitable. Asked me if I knew of a place!!!! Continuing care was mentioned (good I think???) and the possibility of a place near Milton Keynes (we live in Surrey) so I could take the children and visit once a fortnight. I am reeling.

Cried all the way home with the thought he may never come home with me again. Cried on and off all day. Have so many questions now that I didn't ask as was so stunned.

I have lots of questions for all you experts too but I need to sort them out first in my mind. I suddenly seem to be left to find a place for my 52 year old husband somewhere in the UK and I haven't a clue where to start. Haven't told the children yet - what to say???

Mary-Ann
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,356
0
Kent
Westie said:
None of them knew anywhere they considered suitable. Asked me if I knew of a place!!!! Mary-Ann

Dear Mary Ann.

I was shocked to read your post and can`t really give you a meaningful response, but the comment I have quoted above is disgraceful.

Please let us know how you are when you`ve had time to think.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Oh dear, Mary-Ann, I'm not surprised you're stunned.

I had the same situation with John, being told that I wouldn't be able to manage him at home, but I didn't have the additional problems of having to find a suitable home for him.

It's a heartbreaking decision to make, and it's unfair of them to land it on you like this. Surely if they think Peter qualifies for continuing care, it's up to them to find somewhere suitable?

It's surely not realistic to have him at such a distance, and only be able to visit once a fortnight?

I'm not surprised you have lots of questions. I'm sorry, I'm not being much help, but I do feel for you.

Love,
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
So sorry Mary Ann. It's the age again. Too young.

Makes me so very mad, am trying to help friend in similar situation. Her husband is 57.

Sorry, that does not help you, other than to know you are not alone.

Please ask your questions when you are ready. Someone may have some suggestions. Please try not to worry until you have some more discussions with the medical team.
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
I echo what others have replied.
Continuing care was mentioned (good I think???) and the possibility of a place near Milton Keynes (we live in Surrey)
yes, mention of NHS Continuing Care is very good indeed.

The location of a place so far away is not. It would not be so bad if the place was on the coast to the south, or to south-east or south-west of your home.

To suggest somewhere that is across London and so far away is not sensible.

I'd recommend that you stress your own needs and family needs to see Peter very regularly and that you cannot manage with such a distant place.

There must be places to the south of London.

My Jan is 50 miles away from me but that is pretty much a motorway journey that is direct.

I'll PM you with the details of the company that runs her home - she is on Continuing Care.

Be firm with the medics in stating your needs. They have to be respected too.
 

Kate P

Registered User
Jul 6, 2007
565
0
Merseyside
Hi Mary-Ann,

What a shock for you, I'm so sorry.

I wish I had something really amazingly helpful to say... I suppose the hardest question you need to ask yourself is are they right? Would you be able to manage Peter at home with the children?

I just wanted you to know I'm thinking about you and your family.
 

annesharlie

Registered User
Apr 10, 2007
80
0
Vancouver Island, Canada
Mary Ann

I've been away for quite a while so didn't know all this news till I read your thread. What a month it's been for you - I am sure you are feeling completely wrung out. It's so very hard - I know we all realize this day may come, but how hard it must be when it does. I do hope they find a facility closer to you, I was just in the UK and had a few trips round the M 25 - why is it there are always roadworks? - and it would be an extra stress for you to have to travel that far each time you want to see him. Especially since it wouldn't work for you to stay with him a whole day - it's the kind of situation where you'd just want to drop in for a couple of hours - and that's a long drive for that. Having said all this, it does seem to me that it's better for Peter to be in a place where there are professionally trained staff on hand all the time - it must have been so very difficult for you to manage at home with him and still be with the kids and have your own life. Do keep us informed - may something work out soon for you.

a
 

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