Is respite worth it?

[Wifenotcarer]

It took forever to arrange a week's respite for OH, but the SW insisted that I needed it to recharge my batteries. In the event I had a lovely week of freedom, attending a 3 day conference, staying in a 'posh' hotel, then a day pottering in the garden and having a long soak in the bath and finally a trip to the coast to meet with some old friends and a drive home the long way down the coastal trail in bright sunshine.

HOWEVER: I was totally exhausted by the start of the week, with OH (PWD) resisting and failing to cooperate. I had refrained from reminding him that he was going into care for a week, but on the Thursday a letter arrived, addressed to him, confirming the arrangements which he read and from then he was angry with me.There were forms to be filled in, all clothing had to be labelled with his name, he had to take full unopened packets of his meds and the Surgery would not sanction the pharmacy providing them as the repeat prescription was not due for another week, etc. etc. On the day itself he dug his heels in, refusing to go but changed his tune when our daughter arrived to drive him to the Home. All sweetness and light with her but refusing me a Goodbye hug and kiss (as he did when I went to collect him a week later)

Since he came home he has been confused beyond belief, alternatively hostile and clingy, constantly demanding to go 'home', alternatively thinking I am his Mother, or paid carer ( he objected to me sitting down at the computer when the dishes had not been washed) and then wanting sexual favours. He has insisted on going to bed at 8. 30 but up and down 6/7 times saying he cannot sleep and demanding that I come to bed too. Each day he has wet his pants, trousers and bathroom floor, twice, when going for a pee and then shuffled through, in his soaking socks on the new carpets. Five days of this and I am at my wits end, any benefit from my 'week off' has evaporated, in fact the taste of freedom has made the relentless pressure of caring seem even more onerous.

 

[Duggies-girl]

It took forever to arrange a week's respite for OH, but the SW insisted that I needed it to recharge my batteries. In the event I had a lovely week of freedom, attending a 3 day conference, staying in a 'posh' hotel, then a day pottering in the garden and having a long soak in the bath and finally a trip to the coast to meet with some old friends and a drive home the long way down the coastal trail in bright sunshine.

HOWEVER: I was totally exhausted by the start of the week, with OH (PWD) resisting and failing to cooperate. I had refrained from reminding him that he was going into care for a week, but on the Thursday a letter arrived, addressed to him, confirming the arrangements which he read and from then he was angry with me.There were forms to be filled in, all clothing had to be labelled with his name, he had to take full unopened packets of his meds and the Surgery would not sanction the pharmacy providing them as the repeat prescription was not due for another week, etc. etc. On the day itself he dug his heels in, refusing to go but changed his tune when our daughter arrived to drive him to the Home. All sweetness and light with her but refusing me a Goodbye hug and kiss (as he did when I went to collect him a week later)

Since he came home he has been confused beyond belief, alternatively hostile and clingy, constantly demanding to go 'home', alternatively thinking I am his Mother, or paid carer ( he objected to me sitting down at the computer when the dishes had not been washed) and then wanting sexual favours. He has insisted on going to bed at 8. 30 but up and down 6/7 times saying he cannot sleep and demanding that I come to bed too. Each day he has wet his pants, trousers and bathroom floor, twice, when going for a pee and then shuffled through, in his soaking socks on the new carpets. Five days of this and I am at my wits end, any benefit from my 'week off' has evaporated, in fact the taste of freedom has made the relentless pressure of caring seem even more onerous.

So sorry @Wifenotcarer but I know what you mean. I have had a couple of weekends off from looking after dad and I actually got away for a weekend with my husband and we had a lovely time. I did not have to do all of the arranging as my brother looked after dad but it all seems a long time ago now and all I want to do is run away.

I can't settle down to it now and the future looks endless and really bleak, it's probably not in my case because dad has limited time because he has cancer but he is looking far better than I expected and I begin to wonder if they got his diagnosis wrong. That would be just my luck and how awful is that of me but it feels like that because I am working so hard to make things nice for him for whatever time he has left but that time is stretching out before me and I can't see an end. Totally irrational of me but this illness just goes on and on.

You have a lot to cope with. Dad has cancer and dementia but it's the dementia that I can't cope with. Dad is always happy and singing which drives me nuts and he follows me about all the time but I do get to go home at night.

Is it not possible that your OH could remain in the care home next time. You seem to have done so much and perhaps you should consider it because it's not going to get better.

I know what I want and it is to spend some time alone, completely alone. I want to go somewhere and just have my own room with a nice view and some nice walks to do but just me for a week. Time to read a book or just stare out of a window at a view. Complete solitude would be nice.

 

[maryjoan]

Your last line says it all.... and I agree totally with you.
I am getting 3 days 'off' next week, and another side of it is how delightful it is to be a 'normal' person again - but it's, in it's own way cruel - like being out on parole must be from prison.
The 'for better and for worse' card really comes for a bashing doesn't it?

Why do we put ourselves through this? We never even took the vows and are not married.......

I am so glad you enjoyed your time away from it all - and quite sad that you have had to pay the price.

 

[Cagsey]

I completely understand you also, I am so tired, and just experiencing the toileting problems throughout the night, and the constant anxiety my husband is going through. I hate the way dementia brings out the worst in you as a carer.

My step daughters want their father to go into care now, and we are looking at this, as he is so confused all the time and falling, and now we have constant toileting problems.

Anyway back to respite (sorry) They too, keep saying get away for a holiday, but as you say all the organising and wondering how he will be, when he is so ill now, just wears me down. I would like someone to take the best care of him, and magic me away with everything organised.

This is the hardest thing to go through, taking care of someone with Dementia, and wondering if you are the best person for them anymore. But once you make the decision then there is more stress, concerning finances and who will be best to look after him.

 

[Casbow]

I don't know what to say about respite. My husband had 1- week respite September 2017 as I had to go to a family wedding. I thought I would have a week as it would be the first break from him in 9 years and I thought it would be o.k. Well, it sort of was ok. For me. But when I went to pick him up he would not look at me and it took about 15minutes to get a response. He was obviously very angry with me. The staff said he had not been too bad. I did not ask too many questions as I knew three of the members of staff and they said he has been ok. But then in January this year, our niece died and the funeral was in the West Country, so I booked my husband into another care home for 2 weeks thinking I would try to have a proper break. This time in a different home as the other one had no vacancies. I will not give all the awful details but at the end of the first week they rang me and asked me to take him home. They said they couldn't manage him. He had a terrible time there and to make it worse I didn't enjoy him not being at home. Anyway 4 months later he had to go into permanent care. Nursing care, as he was having seizures. I still cannot forgive myself for his lack of care in the second respite home. He was so unhappy. Now he has finally settled in the permanent home (and it took a lot of patience on behalf of the staff) he seems to be happy and is now quiet and calm and eats well. So it is a difficult time when family matters (like a funeral) mean that you feel and want to attend, but it is not possible to get respite for 2 days. At least that was what I was told. I wish you luck for whatever decision.xx

 

[yak55]

I now exactly what you mean wifenotcarer and agree that the initial relief that our pwd will be looked after by somebody else was for me a tense time even though we went on a minibreak. Mum was constantly on my mind and when we bought her home it felt like we'd not had a weeks rest and it all started once again.
Mum is now a permanent care home resident and I still worry and think of her so the caring doesn't stop but at least I'm not at my wits end and stressed, tired and fed up now, I've still got health issues that have been brought on my nursing my dad and looking after mum at the same time, my dad dying and selling their home etc etc and I will never be the same person I was before it all but that's life, you learn to live with it but never get over it, it's not possible in my view. Hugs to you all, you're doing the best you can x

 

[AliceA]

Reading this from you all confirms my instinct. I feel much of the advice from outsiders to the actual situation, and every situation is different, does not address the possible aftermath. The final price.

At a deeper level we have to ask ourselves what is respite to me.

Sometimes I feel my real respite is when I let go of expectations, rather like Lots wife. I, for me and not for you, avoid looking back to how it was as if I have a return ticket. I know this is one way.

When I remember what we did, what we were I do not hanker because it would be like a child crying for the moon when all on offer is a balloon that is fragile and can pop at any moment. We all share that feeling of life suddenly going pop on us unexpectedly.

Respite comes up time and time again, I feel one answer is that we both go away together. Not to the things we did in the past, I do not want to spoil the memories.

I am looking for answers.
I have come up with a few possibilities would really welcome any thoughts you all have.

One is to go as a family group but that just will not happen for me I have put feelers out!

There are respite holidays, one company Revitalise offer weeks for disabled and does offer a few Alzheimer's weeks. They have a lock down policy for those.
I have been told I would be accepted on other weeks as I would continue to deal with most things such as meds and no hoist or handling is required.
There are outings but I think somewhere to walk, albeit a shuffle some days, prepared meals, and others to distract is enough for us.
Do you know of any others?

I have found Altogether holidays they will supply a holiday plan and a companion. I would need a driver there and back. Someone to share the load, a lodge in Centre Parcs? I have no idea of cost yet.
At the moment we are in a very fluid state with medical appointments looming up and I do not want to do anything until I clear a few more.

I have cancelled holiday brochures, but TV ads etc. get through my defences. My husband long term memory cracks in and thinks anything is possible!!!

So until I can put a plan in place. I have to think of mini respites snatched here and there.
Sport on TV is a good sitter, I bought him good earphones!!! I rest read or listen to a talk. More rarely someone goes to an event and I opt out so get and hour or even two. I am working on that one.

I look back to when we started a family we had no family near. When the kids slept I slept. It never occurred to us to have a break from the children although over the years we did join with fellow parents to sit for each other.
Sometimes it just meant a grown up walk together.

Now I try to substitute the things I can no longer have, I have just listen to a talk I was longing to hear in the early hours when I woke, I should get an hours sleep before fully back on duty again.

Sometime I am completely overwhelmed, I barely do the essentials. Packing seems a real hurdle!
Sometimes I feel I can hardly go on, but respite sometimes looks like an attractive box of chocolates with disappointing content. Living in a rural are I have not any easy answers, lack of facilities and transport since the austerity policy.

Perhaps some could join up with each other and spread the load.

 

[Philbo]

Hi

For me, the respite was a much needed break, but a bit of a bitter/sweet event - I'll explain in a minute.

This was the first extended period of respite since my wife was diagnosed with FTD almost 5 years ago. She goes one day a week to the local day centre, run by our NHS mental health trust. It also has a respite unit and I was able to get the SW to arrange for my wife to stay there for 9 days, so I could go to Majorca for a week, for a friend's 50th birthday celebration.

The centre is funded by the LA, so even though my wife is self-funding, any attendance has to be agreed by them (and in our case, paid for), which I knew in advance.

I am "lucky", compared to many, in that my wife is a happy soul, seeming to exist in her own little world. The FTD has taken aware most of her speech and self-awareness and she needs assistance to do most things. She seems to like going to the day centre, so I was sure she'd be fine going for respite, which in the event, proved to be the case.

I had a pleasant time on holiday and it was such a relief to only have to look after myself but I couldn't help thinking "she should be here with me". In 47 years of marriage, this was the first time we had been apart (not counting short periods away for work etc). I rang the respite unit every day, who said she was fine and our two son's each visited too.

The bit I was dreading most, was what she'd be like when coming home but this too, went pretty well although she did seem a bit confused and unsettled for a couple of days. So for me, the respite was worth it but as others have posted, there are so many factors that have to be considered.

Phil

 

[kindred]

I now exactly what you mean wifenotcarer and agree that the initial relief that our pwd will be looked after by somebody else was for me a tense time even though we went on a minibreak. Mum was constantly on my mind and when we bought her home it felt like we'd not had a weeks rest and it all started once again.
Mum is now a permanent care home resident and I still worry and think of her so the caring doesn't stop but at least I'm not at my wits end and stressed, tired and fed up now, I've still got health issues that have been brought on my nursing my dad and looking after mum at the same time, my dad dying and selling their home etc etc and I will never be the same person I was before it all but that's life, you learn to live with it but never get over it, it's not possible in my view. Hugs to you all, you're doing the best you can x

Sweetheart, you have brought up a very important issue here when you say you will never be the same person you were before it all ... I have often thought that, well, no not often, most of the time. Yes, you learn to live with it. I am still recovering, too. All fellow feeling. with love, Kindred.xx

 

[AliceA]

Hi

For me, the respite was a much needed break, but a bit of a bitter/sweet event - I'll explain in a minute.

This was the first extended period of respite since my wife was diagnosed with FTD almost 5 years ago. She goes one day a week to the local day centre, run by our NHS mental health trust. It also has a respite unit and I was able to get the SW to arrange for my wife to stay there for 9 days, so I could go to Majorca for a week, for a friend's 50th birthday celebration.

The centre is funded by the LA, so even though my wife is self-funding, any attendance has to be agreed by them (and in our case, paid for), which I knew in advance.

I am "lucky", compared to many, in that my wife is a happy soul, seeming to exist in her own little world. The FTD has taken aware most of her speech and self-awareness and she needs assistance to do most things. She seems to like going to the day centre, so I was sure she'd be fine going for respite, which in the event, proved to be the case.

I had a pleasant time on holiday and it was such a relief to only have to look after myself but I couldn't help thinking "she should be here with me". In 47 years of marriage, this was the first time we had been apart (not counting short periods away for work etc). I rang the respite unit every day, who said she was fine and our two son's each visited too.

The bit I was dreading most, was what she'd be like when coming home but this too, went pretty well although she did seem a bit confused and unsettled for a couple of days. So for me, the respite was worth it but as others have posted, there are so many factors that have to be considered.

Phil

Hi

For me, the respite was a much needed break, but a bit of a bitter/sweet event - I'll explain in a minute.

This was the first extended period of respite since my wife was diagnosed with FTD almost 5 years ago. She goes one day a week to the local day centre, run by our NHS mental health trust. It also has a respite unit and I was able to get the SW to arrange for my wife to stay there for 9 days, so I could go to Majorca for a week, for a friend's 50th birthday celebration.

The centre is funded by the LA, so even though my wife is self-funding, any attendance has to be agreed by them (and in our case, paid for), which I knew in advance.

I am "lucky", compared to many, in that my wife is a happy soul, seeming to exist in her own little world. The FTD has taken aware most of her speech and self-awareness and she needs assistance to do most things. She seems to like going to the day centre, so I was sure she'd be fine going for respite, which in the event, proved to be the case.

I had a pleasant time on holiday and it was such a relief to only have to look after myself but I couldn't help thinking "she should be here with me". In 47 years of marriage, this was the first time we had been apart (not counting short periods away for work etc). I rang the respite unit every day, who said she was fine and our two son's each visited too.

The bit I was dreading most, was what she'd be like when coming home but this too, went pretty well although she did seem a bit confused and unsettled for a couple of days. So for me, the respite was worth it but as others have posted, there are so many factors that have to be considered.

Phil

It is lovely to hear it worked for you, well up to a point. I think we have to try and follow our own instinct, some try another way. We have been together for over sixty years it is hard to see where one ends and the other begins.
Sometimes I think stress means we have to try and engage a lower gear, slow down. You wife sounds lovely, gentle soul.

 

[AliceA]

I now exactly what you mean wifenotcarer and agree that the initial relief that our pwd will be looked after by somebody else was for me a tense time even though we went on a minibreak. Mum was constantly on my mind and when we bought her home it felt like we'd not had a weeks rest and it all started once again.
Mum is now a permanent care home resident and I still worry and think of her so the caring doesn't stop but at least I'm not at my wits end and stressed, tired and fed up now, I've still got health issues that have been brought on my nursing my dad and looking after mum at the same time, my dad dying and selling their home etc etc and I will never be the same person I was before it all but that's life, you learn to live with it but never get over it, it's not possible in my view. Hugs to you all, you're doing the best you can x

I think you have cracked it with we are all doing the best we can. One of the biggest problems, I find, is other people's expectations and also solutions. Few bother to look beyond what they want to see. X

 

[AliceA]

I don't know what to say about respite. My husband had 1- week respite September 2017 as I had to go to a family wedding. I thought I would have a week as it would be the first break from him in 9 years and I thought it would be o.k. Well, it sort of was ok. For me. But when I went to pick him up he would not look at me and it took about 15minutes to get a response. He was obviously very angry with me. The staff said he had not been too bad. I did not ask too many questions as I knew three of the members of staff and they said he has been ok. But then in January this year, our niece died and the funeral was in the West Country, so I booked my husband into another care home for 2 weeks thinking I would try to have a proper break. This time in a different home as the other one had no vacancies. I will not give all the awful details but at the end of the first week they rang me and asked me to take him home. They said they couldn't manage him. He had a terrible time there and to make it worse I didn't enjoy him not being at home. Anyway 4 months later he had to go into permanent care. Nursing care, as he was having seizures. I still cannot forgive myself for his lack of care in the second respite home. He was so unhappy. Now he has finally settled in the permanent home (and it took a lot of patience on behalf of the staff) he seems to be happy and is now quiet and calm and eats well. So it is a difficult time when family matters (like a funeral) mean that you feel and want to attend, but it is not possible to get respite for 2 days. At least that was what I was told. I wish you luck for whatever decision.xx

A carer friend has got her husband to accept respite care, as she says she will break down otherwise. BUT he will only be accepted for two weeks at a time no less. When the care assessment suggests respite breaks they have little influence of the actual cost. She still visits him but has a few days staying with a daughter from afar. She says the cost is crippling. X
PS. They charge more per day and for two extra days, change over?

 

[kindred]

A carer friend has got her husband to accept respite care, as she says she will break down otherwise. BUT he will only be accepted for two weeks at a time no less. When the care assessment suggests respite breaks they have little influence of the actual cost. She still visits him but has a few days staying with a daughter from afar. She says the cost is crippling. X

Yes, I know, about the costs. It's outrageous isn't it. Bearing in mind the appalling toll care takes on us, you would think it could be free .... I am sorry. Kindred.xx

 

[Spamar]

The cost, when I put OH into respite was the same per week as the full time cost.

After our last holiday was not the break I hoped, we didn’t go away. however, I was close to carers breakdown, so a break was imperative. I found a local carehome and he went there for two weeks. I explained to him that I wasn’t feeling very well and I wanted to go and visit cousins. Seeing them, 6 hours drive away, was something we generally did every year and he understood why I wanted to go.
He was OK in the home, but glad to come home. Obviously, I didn’t visit! This happened again about a year later. Then he declined very sharply and had another respite. Unfortunately, at the end of the time, I got an upset stomach, and I know very well what any care home would say if I visited. At the end of that week, he got a chest infection. No chance of him coming home! By the time that had cleared up, he had declined so much that I would have been unable to care for him single handed ( I have several health problems of my own), so there he was full time!

The beauty of respite was that it enabled me to care for much longer than otherwise, a good investment, I think. The transition to full time was painless. And I was lucky in that he didn’t complain about it - the gentleman he always was until the end!

He died, peacefully, from pneumonia three months later.

That’s my view of respite.

 

[Starbright]

I think you have cracked it with we are all doing the best we can. One of the biggest problems, I find, is other people's expectations and also solutions. Few bother to look beyond what they want to see. X

I do agree with you @AliceA .. A x take care

 

[AliceA]

Yes, I know, about the costs. It's outrageous isn't it. Bearing in mind the appalling toll care takes on us, you would think it could be free .... I am sorry. Kindred.xx

I really agree. Free with champagne service too.
I would love to curl up with a book, watch the sea. I think a joint respite is the nearest possible for me but there is so much to pack, quite daunting.
The assessor did say I was due to get a direct payment, not means tested as I cannot get to carer support activities. Nothing actually came through, she was surprised, applied again but still nothing. It really only covers two nights for one if that.
Night sitters are so expensive too as my friend found out. She is practically blind. Yesterday she was in touch to say her husband had been discharged without consultation from a hospital stay. She went to visit and found an empty bed with him tired and confused sitting in a chair in a room. Then a long wait for medicines. She had to get help to get him home he was shaking with confusion and fatigue.
When we, who can, complain we are doing it for everyone. Just as your diary cheers and shows a funnier scene but a brave one too.
We are all in it together wth our mix of needs and abilities.
Much love, Alice

 

[AliceA]

The cost, when I put OH into respite was the same per week as the full time cost.

After our last holiday was not the break I hoped, we didn’t go away. however, I was close to carers breakdown, so a break was imperative. I found a local carehome and he went there for two weeks. I explained to him that I wasn’t feeling very well and I wanted to go and visit cousins. Seeing them, 6 hours drive away, was something we generally did every year and he understood why I wanted to go.
He was OK in the home, but glad to come home. Obviously, I didn’t visit! This happened again about a year later. Then he declined very sharply and had another respite. Unfortunately, at the end of the time, I got an upset stomach, and I know very well what any care home would say if I visited. At the end of that week, he got a chest infection. No chance of him coming home! By the time that had cleared up, he had declined so much that I would have been unable to care for him single handed ( I have several health problems of my own), so there he was full time!

The beauty of respite was that it enabled me to care for much longer than otherwise, a good investment, I think. The transition to full time was painless. And I was lucky in that he didn’t complain about it - the gentleman he always was until the end!

He died, peacefully, from pneumonia three months later.

That’s my view of respite.

Oh, Spamar, you made me cry. I have nearly lost my husband to chest infections several times. I was lucky as he did rally.
One advantage of respite, when, it works is that transition into one permanently could be easier.
I wish that care homes had day centres so it became home from home.
That they had a room or two that offered a night or two.
My friend found after two weeks away when he phoned home with constant complaints, he returned to constantly tell her he got more attention in the care home she was useless as a carer. She is very stoic!

 

[AliceA]

I completely understand you also, I am so tired, and just experiencing the toileting problems throughout the night, and the constant anxiety my husband is going through. I hate the way dementia brings out the worst in you as a carer.

My step daughters want their father to go into care now, and we are looking at this, as he is so confused all the time and falling, and now we have constant toileting problems.

Anyway back to respite (sorry) They too, keep saying get away for a holiday, but as you say all the organising and wondering how he will be, when he is so ill now, just wears me down. I would like someone to take the best care of him, and magic me away with everything organised.

This is the hardest thing to go through, taking care of someone with Dementia, and wondering if you are the best person for them anymore. But once you make the decision then there is more stress, concerning finances and who will be best to look after him.

We are all put in an untenable situation as these posts show.
I find I can well up to easily, I did that the other day when a stranger was kind in trying to sort out a problem for us both.
My husband fell backwards earlier today, not hurt. I told him with hindsight I wish I had put no climbing without me in the marriage vows! I went to shower and he decided to take a shelf down. This constant anxiety at every sound is as you say so tiring and draining.
Hope you find a good place, you will be the best person to advocate even when not hands on. If you find that magician please send me contact details that's what I need too. X

 

[Casbow]

Why can't we get just 2 days when needed. I realise there is the bed and cleaning. Details of medicines and needs,etc but it is not very fair to put us and our loved one through a whole week (in a lot of cases 2 weeks) when 2 days would be enough in a lot of situations.The story of what happened to my husband is on my previous letters from a while ago. I could never have used respite again after that experience. But then he had to go into a home permanently and it was like torture for me and him. How could I explain anything to him? He didn't understand what I said or if he did he had forgotten in minutes. The staff were amazing and finally he did settle and now he is happy with the staff and his environment. We have been married more than 53 years and I miss him all the time. I visit 4 times a week and do not do much else in the free time. I just cannot move on. Cannot enjoy myself. I wish you all success with getting the help you need. xxx

 

[Casbow]

I have just seen a post on Facebook called Dementia Awareness and it gives a lot of information about carers and their situation. At the end of the day it is always going to be hard for us but this gives some more ideas and is worth a read.xx