Sparkie

[enaid]

Re: Sparkie

You may dislike this suggestion but have you looked into getting proper respite? RESPITE
It can be for just a couple of days initially and then extended as time goes by, or is needed for what ever reason.
You may feel guilty, but it is nothing to feel guilty about as little changes dripped in now will help enormously in the future.
Never heard of 'shared lives' tbh but seems to me if M is not someone they can accept in their scheme then you need specialist help.
Have a word with the mental health team, I really am surprised they have not offered you respite, or have they and you have said 'NO'?
M imho does need monitoring on a regular basis and tbh although you are coping now it may not always be the case.
You are no use to M if you yourself are poorly, so you need all the help you can get as I have said before.
You will never understand the illness, you just have to understand how to live with it.

ps MIL has been in an assessment unit for 12 weeks now and as she lives alone and can no longer cope the decision was made by the 4 bros that she going in a care home, she is sadly too far gone for assisted or sheltered accommodation. We think we have found one that suits and not too far from any of them.
Not a decision easily made and yes, a promise broken but really no other option is available.

Take care sparks and good luck xx

[Sparkie1723]

Re: Sparkie

Hi enaid,
The top girl I/C of the E.Port Council social services who has been fantastic in supporting me is trying her hardest to see if there is a place in a proper respite day care centre that is staffed by EMI trained nurses one day a week...........It is not more than 3 miles away from us and I have been there a long time ago when it was night club/hotel .......it is a countryside location ....nice
See what this brings a day a week will help tremendously.
Sparkie

[enaid]

Re: Sparkie

I really hope she gets a place and soon, it will help both of you am sure. x

[CYNthesys]

Re: Sparkie

Sparkie

When I told lifelong (supposedly) friends that my late husband that was suffering from Alzheimers I never saw sight of them again until his funeral a few years later.
Our children were only in their early teens, and the couple had previously always called to see us at Xmas when on route to visit their relatives, the guy was even the best man at our wedding, and my daughter Liz was a bridesmaid for their daughter, yet once the word Alzheimers was mentioned they avoided my family like the plague.

What more can I say

[Sparkie1723]

Re: Sparkie

Thank you enaid & CYN .......support is much appreciated.

Sparkie

[enaid]

Re: Sparkie

You need to be in the loop, simple as that, the more people on board the better. I have a total disrespect for social workers but unfortunately they are often your first port of call for help. As is your Gp with health issues, keep your Gp up to speed where possible with both Ms health and yours, you should be getting cares assessments and I really hope you had a benefits check also.

[Sparkie1723]

Re: Sparkie

Some may bewondering why I have more time to spend on the forum, Now that I have cooleddown about the episode we went through a couple of weeks ago I can let people know about it.


I was persuaded by the Dr and the mental health team that are looking after us, that now the temporary care package was coming to an end M should go into a respite facility, to give me a break as I had been diagnosed that I had gone anaemic andhad no iron in my blood…..I’ve been put on 3 x 200 mgs of iron tabs.

Reluctantly I agreed and the daughter in law took her to the privately run care facility….I couldn’t take her ….because I knew she would react about being left there and Iwould have brought her straight back home.
So Wed 25^thMay she was taken there.
I rang constantly to be kept informed……..was told on the first day that she wasrestless and a little agitated ….rang late on at night I was told she was still roaming around, but she was OK.
Thursday 26^thagain told she had been restless all night and still restless and upset andthat was to be expected.
I rang again late at night and was told she was sleeping soundly.
Friday 27^th I rang early in the morning and was told she was still sleeping.

Then thishappened.
M’s daughter rang the home and asked if she could take her Mum out for a breath of fresh air and an ice cream or something.
She was told Yes that’s fine.

However daughter caught them on the hop, when she arrived to pick M up she walked in and was 5 yards away from her Mum and DID NOT recognise her…..she said when she saw her she looked like a zombie, asking what was the matter with her she was told she had been given Lorazipan to make her sleep because she had roamed every minute she had been there.

M was sitting there with a dish of corn flakes & milk dipping her fingers in and eating one flakeat a time ( she can feed herself WELL normally) She does not like milk
Daughter got her Mum ready and helped her to the car.... Staff from the Home came running out with a Syringe of liquid ( Her morning med) and a white tablet, and gave it to M before they left.
Before they had travelled 2 miles M was asleep, they took her to the daughters and her husband ( son in law) had to carry her from the car because they could not wake her.

For 5 hrs they tried to wake her and called me and said I’d better go down as they did not know what to do.

When I got there I could not believe that it was Margie lying back on the sofa Daughter lifted her arm to show me and her arm just dropped and I thought she had gone and we had lost her …after 3 quarters of an hr I managed to get a response to my voice, her pulse was racing and on calling our surgery they said dial 999 ………..M ended up in A & E she was checked over as she was slowly coming round ……..shew as give the thumbs up and daughter brought her home.
All this was a nightmare.
We have discovered that the home made a mess of her normal medication ( had doubled it and gave her 24 hrs lorazipan dosage in 12 hrs on top of the incorrect dosageof her normal med.
She is not going in any place like that EVER.
A new careplan is being worked out with the Social Services, mea while Lyn comes every morning at 9.30am showers and dresses her Mum and takes her for the day and I collect her at “6ish”
Other daughter Kim takes it in turn ( When she can she works ) with Lyn which is great for me and Margie.
But I cannot expect M’s daughters to keep this up and we are working on a plan that will suit and fit in to all our routines & M’s benefit.
There’s a story for you……………Meanwhile I’ve vented my anger on the firms that I’m having hassle with, which is a good feeling in itself.
Sparkie

[charitynjw]

Re: Sparkie

That's disgraceful, Sparkie.

Imho, they often administer these 'chemical coshes', not in the patients' best interests, but just to make their (the staffs') life easier.

All the best to you & yours, mate.

[enaid]

Re: Sparkie

Really sorry you have had this awful experience on what could have and should have been a great help with your situation.

[Sparkie1723]

Re: Sparkie

Really sorry you have had this awful experience on what could have and should have been a great help with your situation.

Thanks Enaid................We are ALL OK now.............I wish to add ...........NOTHING has been exaggerated in this ....in fact I've watered it down a bit ...a lot happened I di not mention.
Thanks for the kind thoughts and help and advice you haven given
Sparkie

[enaid]

Re: Sparkie

I feel a little guilty as it was I who suggested this would be of help both to you and M.
We couldn't cope as well as we do with our daughter if not for we get a break once a month or 47 nights per year respite. Trust me too when i say although she can not communicate vocally we would know if they in any way were unkind or did anything untoward as we would never get her through their door again.
Please don't give up on respite though Sparkie have a read on CQC site and ask around for reviews with others in your area.
I am just thinking even if you don't want the service as a break you may need the service in an emergency situation that will not be helped if you are not confident M will be properly looked after.

[Sparkie1723]

Re: Sparkie

That's disgraceful, Sparkie.

Imho, they often administer these 'chemical coshes', not in the patients' best interests, but just to make their (the staffs') life easier.

All the best to you & yours, mate.

Thanks matey.........that is exactly what happened...........they couldn't cope with M's restless energy any longer...............I coped with it for months..............and I was not trained nor had any idea how to cope at first......I'm a quick learner and soon learned how to cope in a reasonable fashion ....Not perfect but I coped and WILL continue to do so.............
Sparkie

[Sparkie1723]

Re: Sparkie

I feel a little guilty as it was I who suggested this would be of help both to you and M.

NOT a chance Enaid...........NO guilt should be assumed by you at all.............I was told by the Dr that the time would come very soon that due to the way I was going down hill ....a decision might have to be made on my capability to look after M safely.
I must add that I feel much much stronger and not as tired as I did since Kim & Lyn have thrown ALL their weight and energy to ntaking at least 40% of the burden off me and I'm feeling better every day
Sparkie

[des8]

Re: Sparkie

Oh Sparkie
A dreadful experience, which I'm afraid is still all too common.
Good to hear tho' that the family have rallied round you, and pleased you yourself are feeling more on top of things.

[Sparkie1723]

Re: Sparkie

Oh Sparkie
A dreadful experience, which I'm afraid is still all too common.
Good to hear tho' that the family have rallied round you, and pleased you yourself are feeling more on top of things.

Thanks des..............much appreciated.
Sparkie