Scared stiff

[Scarlett123]

I phoned John as usual yesterday, to say I would be at his club in 10 minutes to collect him. I've been doing this the last month or so, because he cannot read the time any more and was getting very anxious, thinking I'd forgotten him, when it was nowhere near 3 o'clock.

When I got there - no John. One of the staff came out and said that he'd gone. I phoned him, and he didn't answer. By now I was worried sick that he'd been run over, but eventually he answered, and it transpired he was at home.

When I reached home, I asked why he hadn't at least told me when I phoned that he'd left the club and gone home. He said "well I thought you were coming to collect me at home". I'm afraid I just lost it then, because I can't have any sort of coherent conversation with him any more, and asking why I would take him to the club, but collect him from home, makes sense to him, and I'd been "gallivanting", having been out at lunch with a friend.

Then I got a call from the Manager of the club today, saying that John could no longer attend, unless he has a one to one carer, and that's going to cost "a lot of money". The Manager asked to see me "in the office", I feel like I've been summoned to the Headmaster's study, and I know that as we have savings, we are going to have to pay the full cost of the carer.

John insists that I'm a real selfish cow, going out for lunch, instead of being with him all the time, and I feel so low because I've a feeling that 3 visits a week is now going to cost about £150!

 

[kingmidas1962]

The situation with the manager of the club is bad enough as it is (complete lack of tact by the sound of it) never mind it being on top of an already stressful situation with not being able to find John! I'm not sure what kind of club it is but I'm astonished that he was allowed to leave without question when they must know you go to pick him up.

It does sound like an awful lot of money for a carer (if that's what you have to do) but will it still be worth it for him to go? Sorry, I don't know your situation so this may not be an option at all. I just wondered if a 1-1 carer would make it easier all round and he'd be able to be reassured that no one had forgotten him.

I don't really know what to say apart from I hope you get it sorted out and I do really feel for you - its just one thing on top of another sometimes isn't it?

 

[rajahh]

I would have thought the Day Centre had a responsibility to make sure he did not go home on his own.

It would be the Day Centre Manager who would feel she was being summonsed not the other way round.

Gordon does pay the full amount for his Day Care. it is £40 a day plus the midday meal.

Must say I would be willing to pay for 3 days if he would go but it is hard enough to get him to go once a week.

Do not feel as if it is you on the carpet, you are at least owed an apology and at best an assurance that this will not be allowed to happen again.

I understand your frustration at the lack of your husband's logic this is what I find the hardest to deal with too.

Jeannette

 

[Fed Up]

I'm so sorry Scarlett123, it sounds like you've really got the rough end of the stick. Its worrying that the club let him go home, he could have ended up in front of a cashpoint handing over cash!
Do you trust the club supervision and does John like it could be two points to consider as 1to1 how do you know he'll get that sort of care once you go out of sight. The club sounds like its onto a good thing and I'd be a bit worried. I hope my misgivings are unfounded and John likes the club otherwise perhaps look elsewhere but don't feel guilt for going out lunch, shopping, whatever. Carers need time off and that time is their own! my indulgence an hour or two birdwatching in solitude. Coffee and a sandwich with bins and my chum kept me sane for years.

 

[Scarlett123]

Thank you so much for your kind words and reassurances. Having thought about things, and read your posts - what the hell am I getting worried about! We went for John's chest Xray today, and he doesn't know what the GP said to me.

Also, I haven't told my son or daughter, working on the basis that there may be nothing wrong, and why worry them unnecessarily. So I'm stinking of burning martyr as well!

I've also decided that as there are no pockets in a shroud, that whatever the cost, he's going to the club. He does like it, and they have people there ranging from completely compus mentis, to those with AD, as opposed to all AD, because I felt this would be more stimulating for John.

Obviously, as he's deteriorated, he can no longer be with the general carers, but has to have 1:1 care, and I now feel guilty that I didn't ask for it. Oh yes, guilt - my constant companion!

 

[Scarlett123]

Well I met with the Headmaster, and was told that the cost will be - £9 per hour! So, for a usual 5 and a half hours, that'll be £50, or £150 a week for John's 3 days, plus lunch.

We have a few weeks grace, as they won't implement this cost till John's had his scan, and seen the psychogeriatrician. But when I asked if he would be having 1:1 care, during his time at the club, the answer was rather vague.

As John enjoys this, and says he wants to keep going, I'm inclined to pay, and will pay whatever is asked, but a friend I mentioned this to, felt it very expensive, as the care would probably not be 1:1.

What do other think, please?

 

[nicoise]

Dear Scarlett123,

Is it possible for you to meet that cost? I know it is steep, and your friend also felt it was expensive, but is your friend very knowledgeable about care costs? I only ask because we never really know what something costs until we need it (think cleaners, electrician, car repairs, care home charges, etc...)

I'd say that whilst it is a lot of money to find, at least it means for now that John gets out and does something he is enjoying, and you are given a break for a few hours.

In time inevitably that will change, and you need to grab every opportunity you can whilst the "going is good", in its own way.

 

[Pross]

Hi Scarlett. I attempted a reply yesterday but must have hit the wrong key. I am astonished that the club let your husband leave on his own like that. Strikes me it should have been you slapping the headmaster's wrist, not the other way round. I now tell myself firmly that money is only useful for what you can exchange it for. I pay for help left right and centre and refuse to think about it! We carers need all the down time we can get if we are going to be able to keep caring.
I hope you don't have to keep the GPs comments to yourself for too long. The role of burning martyr sounds a burden too far.

Hugs, Pross .

 

[Scarlett123]

Thank you so much Nicoise and Pross for your kind words. Yes, even if I have to sell my body (like there's going to be any takers for a 66 year old with arthritis ) I'll find the money for John!