Respite or not

[simpknt]

Hello,

As my partner's dementia gets worse I find I need to post here more often. Our friends are very supportive and we have excellent support from our mental health team. I attended a meeting last week to discuss the way forward with Janet's care and it went quite well until we began discussing a respite break. The CH we have settled on do two weeks minimum for respite. I'd like a few days away in October to visit my family in Dover. I was very taken aback when the SW present at the meeting insisted I would not be allowed to visit Janet during the respite. I know that we have a pretty limited amount of time together before I 'lose' her completely to dementia and the thought that a two-week chunk of that time will be lost is too much for me to bear. Respite is suddenly not so appealing. Plus it would give Janet so much stress to be in a strange environment. When it comes down to it, I would rather have Janet with dementia in my life than have no Janet in my life.

I did manage to get a few days away last month thanks to 24-hour home care, but the carers have stated they will not do it again because Janet is so aggressive and unpredictable. When I returned home, Janet and her carers were having a drink outside in her estate Tapas Bar. Janet looked so lost and alone, sitting there. That image has haunted me ever since.

Somehow I don't think I am unique in having this problem! I'd greatly appreciate other TP-ers thoughts.

Thanks for reading.

David

 

[Butter]

Unless there are some unusual circumstances - as a result of unusual and complex legal proceedings - that is total nonsense.

Of course you can visit your partner if she wants you to .

I suppose if you were under an injunction not to approach her - that would be an example. But otherwise we are all free to see each other in the UK.

 

[rajahh]

I know the advice is not to visit, to give the carer a total break, but I would have thought that is all it is ADVICE.

I have had 3 lots of respite. Two of 8 days and one of 14 days. Perhaps a different care home could be found that will offer shorter breaks

 

[seaurchin]

Hi,

That sounds ridiculous to me. I would insist on knowing their reasons and would probably look elsewhere for respite provision.

Good luck and I hope you manage to get away for a break...

Sea

 

[lin1]

Hello David
Sorry have some questions for you.

To both my question Was it the SW or (social worker) who told you or Someone from the respite place
That they only so a minimum of two weeks respite, this seems odd to me.

Being told you wont be able to visit Janet while in respite, seems most unkind to say the least.

If it was the SW, I would check with the prospective Respite place and see what they say.
If it was the prospective respite place, then I am sorry to say I would start looking for somewhere else
I know Respite is for the Carer and we often say on here, this break is for you, go off and enjoy it etc etc
But I totally understand where David is coming from

 

[Izzy]

I've been told I can have short (ie 2 or 3 night) respite stays. I haven't used any as yet but might consider home respite in the future.

 

[CollegeGirl]

My dad has 4-night respite breaks, and he finds it extremely hard not to visit during that time. He is advised not to, for both his and my mam's sakes, but if the respite went on for longer, he would, I know, go against that advice. That's why he's chosen just short respite breaks, as this is all he can cope with. As it is, he rings the home at least three times a day for updates.

I am certain that they could not prevent you from visiting. Yes, respite is for the carer, but if by saying that you will not be allowed to visit, this adds to your stress, then it's not really respite for you.

I am slowly coming to realise this with my own dad, and although I personally would like him to have a complete rest for two weeks with no contact, I am beginning to understand that this is simply impossible for him.

If you feel so strongly, stand your ground, or as suggested, look for another home which is more flexible.

Good luck and do let us know how you get on.

 

[simpknt]

Thank you all for your comments. To clarify a little. The CH told me that they do a minimum of two weeks for respite. The SW (social worker) told me that I should not visit Janet as it would cause her distress when I left. I have no doubt that it could be enforced legally if they chose. My own feeling is that they believe they could control Janet better in a CH. However, to SS she is a case in a file and needs to be tidied. To me, she's my partner of 20 years, the great love of my life. I'm losing her to this awful illness and I want to spend as much time with her as I can before she's lost to me. Two weeks is a huge chunk of lost time that I can never recover.

I plan to tell the SS that I no longer want respite. I know I would be unhappy and distressed the whole time so it would be no break at all for me. Just a different type of stress.

We looked at a couple of local care homes and Janet was adamant she did not want to go to them. This one she found by accident when she got lost. I thought it was fate, guiding her! OK, that is fanciful, I know. We visited and Janet quite liked what she saw and so did I.

Thank you for responding to my worries.

David