Respite experience

[nae sporran]

I have seen a couple of threads recently about respite and people asking if it worth it.

My OH stayed at home while I went away for a few days holiday. She had her befriending scheme visit on Tuesday, though not the usual lady and the replacement got mixed up over keysafe codes and security door entry, so had a phone call at lunchtime. The care office at the sheltered housing where we live sorted it and I got back to hiking and a lovely sunset.
I broke the rules many people suggest by actually calling home on Wednesday when OH's daughter was visiting. It was a relief to know she was fine and I could get back to hiking on Exmoor, and having a meal and pint in the evening. Chatting to a local worthy propping up the bar is not a chance I get very often, so however banal it was actually a pleasant evening.
Thursday was the hard part. She was supposed to have transport to day centre from a franchise run by a lady who is a trained carer. They come recommended by the Dementia Navigator and are very good, so was disappointed when the centre told me she did not turn up. Turned out she had a panic when trying to get into the car, and needed to transfer to a wheel chair. I think based on a recent panic at the memory café that is going to become a pattern as mobility and special awareness dim. More phone calls and text messages as I worried she would not go to day centre and I would need emergency care workers to give her lunch.

Despite the worries I walked 10 miles over 3 days, had fresh air and sunshine in an area I could never get to normally, but the stresses were always there in the background and on the phone. She is fine after the experience though. It was still worth going away, but will I get another chance if she deteriorates over the winter and needs more care ? I don't know, and suspect that is the stage some people who ask the question have reached.

That was a long post, sorry.

 

[karaokePete]

No need to apologise for the long post.

I'm glad that, to some extent, things worked out.

 

[Izzy]

A mixed time for you. I’m glad you managed to get some sun and walking done. I know the stresses never fully go but I’m glad you feel some benefit.

 

[jaymor]

When we have to rely on others we can never be sure things will go as we plan. So glad you managed to enjoy your walk despite the worries and changes to plans. Hopefully you will manage for some time to get these small breaks.

 

[carolynp]

I have seen a couple of threads recently about respite and people asking if it worth it.

My OH stayed at home while I went away for a few days holiday. She had her befriending scheme visit on Tuesday, though not the usual lady and the replacement got mixed up over keysafe codes and security door entry, so had a phone call at lunchtime. The care office at the sheltered housing where we live sorted it and I got back to hiking and a lovely sunset.
I broke the rules many people suggest by actually calling home on Wednesday when OH's daughter was visiting. It was a relief to know she was fine and I could get back to hiking on Exmoor, and having a meal and pint in the evening. Chatting to a local worthy propping up the bar is not a chance I get very often, so however banal it was actually a pleasant evening.
Thursday was the hard part. She was supposed to have transport to day centre from a franchise run by a lady who is a trained carer. They come recommended by the Dementia Navigator and are very good, so was disappointed when the centre told me she did not turn up. Turned out she had a panic when trying to get into the car, and needed to transfer to a wheel chair. I think based on a recent panic at the memory café that is going to become a pattern as mobility and special awareness dim. More phone calls and text messages as I worried she would not go to day centre and I would need emergency care workers to give her lunch.

Despite the worries I walked 10 miles over 3 days, had fresh air and sunshine in an area I could never get to normally, but the stresses were always there in the background and on the phone. She is fine after the experience though. It was still worth going away, but will I get another chance if she deteriorates over the winter and needs more care ? I don't know, and suspect that is the stage some people who ask the question have reached.

That was a long post, sorry.

Dear @nae sporran, to this very helpful post I would like just to add the following from my experience with respite care over many years for our (moderately) intellectually disabled son (now deceased). In addition to the dramas and phone calls, he would almost invariably come back with at least a virus if not (when fifteen) chicken pox or (when twenty) a fungal toenail infection that took a year to cure. So I had many occasions to ask myself whether it was worth the price to be paid - but I kept on doing it, not just for his sake (a nice change away from protective parents, especially as he grew older!) but for mine. There was, of course, the immediate benefit, felt at once, of which you speak. But there was also, and perhaps more importantly, a benefit over the longer term, a lightening of the spirits, an awareness of a breeziness I'd had in the carefree days before he was diagnosed. Looking back now, I think it was probably this benefit that enabled me to go on being "myself" - or at least remembering, however faintly, that I'd had a "self", once upon a time - and this was absolutely crucial after he unexpectedly died at 23, when I was 54. Now of course I am facing the need for respite again, with my husband having dementia; and, at 70, like other posters I am acutely aware of the importance of somehow keeping a sense of my own identity. It's a tremendous, existential struggle.

Even if respite doesn't go well, even if it's a disaster, it HAS to be done, I believe, because I can see no other way of hanging on to one's own self. It's likely to be the best insurance we can have, against a future in which, if we outlive our partners, we will have to pick up the scattered pieces of our lives - and go on.

 

[Bunpoots]

I'm glad you managed to get a break @nae sporran - even if it wasn't entirely stress-free.

 

[nae sporran]

Thank you for your post @carolynp. I'm sorry you lost your son so young and now have to look after your husband. What you say about retaining your own identity is why I did it, and enjoyed it despite the stresses. A couple of years ago I was feeling trapped by caring and as the winter approaches it was good to get out and do the sort of thing I was doing regularly at weekends when I was younger and freer.
The future is sad and uncertain, that's the rub, and I can't write anything about your final comment which can add to that.

Thanks Pete, Izzy, Jaymor and Bunpoots. It's good to sort my thoughts out and to know others understand the ups and downs of the caring life.

 

[marionq]

Lots of sound advice above. I also think that as the illness progresses you may find it “easier” to get respite insofar as awareness goes. After each of my husbands three fortnight breaks he never mentions again that I have been away or he has been somewhere different. His short term memory is so bad that he instantly forgets. While he is there he is quite content again because he can’t remember how long he has been there.

Today my eldest daughter is picking him up in her car from daycare. As she lives in London and we only see her a couple of times a year I have my fingers crossed he will remember who she is!

 

[nae sporran]

That's quite sad @marionq. My granny was never actually diagnosed with dementia, but showed many of the signs and as work took me away she rarely knew who I was either, though she did seem to recognise me as someone familiar. I hope your husband does know your daughter and she has a good visit.

 

[Agzy]

I know that up to now I am very lucky in that my OH, Pauline, is doing well under medication and is coping amazingly. For some 26 years together we caravanned all over UK and for last 16 years, Europe including extended stays in Spain in the winter. Although she now refuses to come away at all she is adamant that I carry on as much as I can living my life in regard to the van and am now 4 weeks in to a 7 week stay away caravanning near Benidorm. Respite? Yes it is but mixed emotions of guilty and worry although she laughs about it during our nightly phone chats and reminds me realities is a 2 way thing and she likes not being fussed over but it doesn’t stop the guilt and worry gnawing away. I know it will change but, as we are both 76 now, I also know that my own health will deteriorate and it must all stop and to be honest it is that prospect that worries me most. So, @nae sporran, I would say that we who can get respite should grab it while we can in spite of the mixed emotions and issues it raises. Happy walking.

 

[nae sporran]

Thanks for your post and sensible advice @Agzy. Enjoy the rest of your holiday.

 

[Mudgee Joy]

I have just had my first single night of respite. I went away and my husband stayed here in our home.
It was great. It took a lot to arrange;, 5 carers here including two daughters and a niece. My husband was happy to have me home when I returned the next day, and he wasn't too anxious. One night will do me for a while.
But I have found out that in the next town there is a 'Bed and breakfast' set up for dementia specific cases . They only take 4 people at time, of the same sex, and only for a weekend. So I'm excited that may suit my case and I'm arranging an interview. (They have you in for a morning tea first to see if your person will 'fit'. ) fingers crossed.

 

[nae sporran]

I have just had my first single night of respite. I went away and my husband stayed here in our home.
It was great. It took a lot to arrange;, 5 carers here including two daughters and a niece. My husband was happy to have me home when I returned the next day, and he wasn't too anxious. One night will do me for a while.
But I have found out that in the next town there is a 'Bed and breakfast' set up for dementia specific cases . They only take 4 people at time, of the same sex, and only for a weekend. So I'm excited that may suit my case and I'm arranging an interview. (They have you in for a morning tea first to see if your person will 'fit'. ) fingers crossed.

Good luck setting that up Mudgee Joy, and nice to hear you had a pleasant day off from caring.