Continuing care?

Spongecake

Registered User
Apr 13, 2007
10
0
London
Hello,

Has anyone been in our situation? My mum has been diagnosed with severe dementia. At the moment she lives in a lovely warden assisted flat and the staff there have been marvellous, making her coffee in the mornings and generally helping out, but the psychiatrist said residential care was the right course.

We took her along to three care homes for a visit but they all said they felt she was too difficult to manage. One care home said they would take her but both my sister and I felt the place was too chaotic, with a strong smell of urine and a generally shabby feel, although the staff appeared nice.

So we have tried a more intensive home care package . This is not ideal either as the home care people are not on mum's wave length and she does spend a fair amount of the day staring at the telly or standing at the window. But she seems reasonably calm, and she does see either my sister or myself every day. . The next step would be continuing care in a local psychogeriatric hospital, but I don't know if my mum is "bad" enough for that, or if we should persist with other care homes. Has anyone had a similar experience?
 

Norman

Registered User
Oct 9, 2003
4,348
0
Birmingham Hades
Hi Spongecake
welcome to TP.
Your situation is not very clear to me.
Have you had a community assessment?
Folllowing this there should be assistance from a social worker in finding suitable homes and /or support for Mum.
In fact with the whole package.
Can you give a few more details?
Norman
 

Spongecake

Registered User
Apr 13, 2007
10
0
London
Thanks

Thanks for your reply Norman.
My mum does have a social worker and he has not done much. After the psychiatrist's assessment in January that mum needed residential care the social worker told us there was a place at a local council-controlled home. We took mum along for the day but that was a disaster. She tried to get out and hit people and they said they wouldn't have her there unless the situation was different. we took that to mean that she would have to be sedated.

A few months later the social worker told us there was a place at another council-controlled home. We liked this one better but after a lunch time visit they also said that mum was too difficult. In the meantime I have taken mum along to several private home but either we didn't think they were suitable or they said they wouldn't have mum because she was too agitated. She is not agitated in her own flat.

The social worker has not been much help, he just seems to want to tick boxes. Maybe it's beacuse we're in a fairly poor London Borough where services are really stretched. But after the visit to one home in July a CPN has got involved and she was the one who said that the home care package might work. Both my sister and I feel at last that we have a professional involved who has mum's interests at heart. The warden at mum's(charity-based) sheltered housing has also been wonderful but it is really a place for independent living. So we are aware that they are being very tolerant to allow her to stay there, although she is calm and happy with everyone there. That's why it's so hard to move her. She also has heart failure and very swollen legs so she's less likely to wander..

My mum can still go to the toilet, move around the flat, switch the telly on, eat cakes and yoghurts. She gets in the bed but I don't know if she does that every night. My sister and I shop and clean and I wash her. She sees one of us every day for a couple of hours at least, and comes back to my house three or four times a week as I live nearby. She sees the warden for a short time every day, the carers three times a day and dementia support workers three times a week. I have fought for her independence up to now, to the extent that my sister and I fell out over it, but I wonder now if it is enough care for her - or is it cruel.
Thanks.
 

Spongecake

Registered User
Apr 13, 2007
10
0
London
Thanks Nada. We don't have a local Alzheimer's Society so I will try the helpline. Anyway today the Trustees of the almshouse where mum lived sent us a letter to say that they don't want her to stay there any more. Apparently she has a license to reside, not a tenancy, so they can do this.
So she has got to move somewhere. The CPN is talking about moving her to an assessment unit and from there to a care home or psychogeriatric hospital, whatever they think best. At least everyone agrees that she can't live independently anymore, even me. I was very keen for her to stay independent as long as possible. My sister is still quite hostile, blaming me I think because she wanted a care home ages ago and she told me my mum would have been settled by now. So I'm feeling terrible.
Thanks for listening.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
Dear Spongecake,

Don`t let your sister blame you and make you feel guilty. It`s easy to be clever with hindsight.

You tried to preserve your mother`s independence as long as possible, and now things have changed, you are still trying to do your best.

All your sister is doing is apportioning blame. That won`t help anyone.

Take care

Love xx
 

Cate

Registered User
Jul 2, 2006
1,370
0
Newport, Gwent
Hi Spongecake,

Hey dont feel terrible, we do what we do with the very best of intentions.

One care home said they would take her but both my sister and I felt the place was too chaotic, with a strong smell of urine and a generally shabby feel, although the staff appeared nice.

The chaotic bit may have put me off, but I would certainly go with kind and careing staff over good wallpaper if you see what I mean.

It might be a good idea to try and research potential homes for mum with just your sister, then if you feel you have found somewhere that looks like it could be a winner, then take mum along. It could be that taking her around (and I understand you feel it important to do this), however may be confusing her a bit.

Dont forget, if you cannot find anywhere within your own area, you are entitled to look elsewhere.

Good luck in your quest, I'm sure you will find somewhere worthy of having your mum soon.

Love
Cate
 

Spongecake

Registered User
Apr 13, 2007
10
0
London
Thanks to everyone who replied. I agree with you Kate about wallpaper not being important in a home but what put me off was a strong smell of urine nearly everywhere and the fact that when one resident flushed the toilet in her room, water (or something) gurgled up in the sink !
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Maybe it's because we're in a fairly poor London Borough where services are really stretched.

I do hope that not the reason , as I also live in london . My social worker say they do have a uper limit in how mum they can pay .

Alos in our area we do not have any more LA run care home , If I was you I would asking social worker to offer you more home to view , they is good home in london that have residential and EMI unit in the same building , that are funded by socail services.

PS this may be of some help http://www.counselandcare.org.uk/helping-you/
 
Last edited:

Spongecake

Registered User
Apr 13, 2007
10
0
London
Continuing care, private, council homes-which?

Thanks Margarita. I'll look on that website. Places with residential care and EMI together sound good, but I don't think our authority has any. The council-run residential hopme down the road to me had really bad CSCI reports- in fact they were not allowed to take any more referrals for a while.
But they've just had a good report, and I went to look round and it seemed OK.So I'm a bit hopeful about that. It's selfish I know but the thought that mumis just 100 yeards away and I can pop in frequently would really help me, if not my mum.

Has anyone had any experience of council-run vs. private homes? One private one, which looked good, wanted me to pay the weekly rate every week as a sort of retainer, even though we'r not ready to move mum just yet. Is this normal? I suppose they are businesses.