disappointed

[zoe]

Hello everyone
I have just registered with TP and hope I am posting this thread correctly. I spent the afternoon reading some very familiar stories and browsing the site generally but what really prompted me to join was a telephone call I received today. My husband has suffered from AD for several years and since last year has attended a day centre twice aweek. This is great! About a month ago I wanted to go to an exhibition on the Sunday and rang a local care home to see if they could provide care. After asking about his condition and requesting his community care assessment he was accepted. I took him at 9.00am and collected him at 4.00pm. The care worker said he had been fine and I decided to use the home on a 4 to 6 week basis. When I rang today, a month later, I was told that he had been very distressed and kept wandering outside because they do not have a locked door policy and I would have to find somewhere more suitable. I can accept the reasons but, as I asked, why was nothing said on that sunday or why didn't they phone me later. Needless to say I shall be writing for an explanation.
I'm not normally so grumpy but carers look forward so much to these odd outings and it's a big disappointment. Thanks for listening
zoe

 

[Brucie]

Hello Zoe and welcome to TP.

The way that people who have dementia behave depends on all sorts of things.

I can only speak from my own observation of my wife Jan, but when she was still with me at home, her behaviour patterns would vary according to time of day, time of month [there was a cyclical aspect], whether she had eaten, what she had eaten, whether I had said something that caused her to be confused, the amount of light [SAD seems to be a recurring feature], when she had last had any medication and which medication that was. There also was the 'coming at you out of the sun' aspect that meant she would show some alarming behaviour just when I thought everything was all right.

It may have been that on the first occasion he was at the home, your husband was busily trying to figure out what on earth he was doing there and was just waiting to see you again. The next time, he had that all sussed, and said to himself "the hell with this, I'm off back to my wife".

When people are prone to wander - and especially when in the care of a home that takes over legal responsibility for its residents whether permanent or on day basis - that makes life difficult as not many have secure doors. Only the specialist ones have that.

Having said all that, they should have given you guidelines as to what would cause them problems.

My wife went to a day centre on a couple of occasions. Then they banned her as being too disruptive. We were offered respite, but the only occasion I tried to use it for a couple of days to go abroad on business, they said "oh, you have to book 6-9 months in advance".

Bottom line is that the entire care system seems to have been designed and implemented by people who are not carers. It is a bit like asking Dracula to prepare a vegetarian meal.

My best wishes and good luck!

P.S. You are SO not alone!

 

[connie]

Hi. think I have posted on this thread before.

Lionel now goes to a day centre weekly, hoping to make that twice a week. So far no problems with this arrangement.

However once every couple of months I like to have a day in London with my girlfriends. We go to the ballet or a show (matinee) and then a meal and I used to catch the last train home. 9-15 from London..Al in all this means I would be away from Lionel all day & evening. NO CARE COVER AVAILABLE - not even if we purchase it ourselves from Crossroads or one of the other organisations.

I always get told to put Lionel into respite (he funds his own). I just want a chance to have a complete long day to myself whilst he is still amenable to same.
Hoping to go to the ballet early April - my dear eldest grandson will come and stay with us for the weekend..I know I am more fortunate than some, but I also realise time to do these things is running out fast, as Lionels illness progresses.

Sorry to moan, Connie

 

[Sheila]

Dear Zoe, Brucie is right, it boils down to the open door policy of the home which means they cannot safely have him there. Try ringing round to see if a home specialising in dementia care could help. Connie, the only way I got round this was to pay a carer personally, privately, not going through anyone else. I had several good carers I got to know well and when I asked if they could do a private sit, they happily obliged. They knew Mum, and both she and I knew them. I knew they were aware of all her little ways, I had my mobile, it worked for me, p'raps it could for you? Hope so, love She. XX

 

[zoe]

Thanks

Hello again
Thanks for your messages of support. I have ben told by the SW of another home that may take him and I am going to contact them to make sure.
I think what really annoyed me was that I wasn't told about the problems when I went to collect him on that day.
Never mind. Fingers crossed this next place will be ok
Best wishes to everyone
zoe

 

[CraigC]

Hi Zoe,

your own deduction is right. Your social worker should help you find a suitable day care centre. It does sound like you dad needs something more secure and some day centres offer this securer option. Good luck.

Connie,

We had exactly the same problem in sense that there has been a constant push for dad to get respite care - this meant that he'd be away from mum for a whole week at a time. The social worker's feeling was that it would give mum a proper rest. But what she really needed was a care plan that would help her cope on a day to day basis. She new that as soon that dad came out of respite it would be hard to cope as she'd be lulled into a false sense of security, it may also cause dad a lot of confusion. Is there no way that you can get someone else to pick up Lionel just for a few hours ..... it may give you those extra hours that you need. Day care centres are pretty strict about the hours and it seems impossible to find a home that offers respite care to take people on a more 'casual' basis. Good luck to you.....

 

[connie]

Thanks Craig, you have hit the nail right on the head......Respite can, sometimes, cause more distress and confusion, both to the carer and the cared-for.
Sheila, will try to find someone who could come in on a private basis, had not thought that one through.

Regards to all, Connie