Is respite worth it?

Gildra

New member
Oct 19, 2018
1
0
I have been a carer for my mother for nearly 8 years and concur with everything said. I have shunned a respite break for all the problems listed. I need a holiday and I think it would benefit my mother but we need to be part of a group and we have no family. I think a small ship cruise would be ideal and my idea is that if there were two or more carers then we could take turns in looking after our loved ones and get a break. Is anyone interested to discuss further?
 

kindred

Registered User
Apr 8, 2018
2,937
0
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
Thank you with all heart, Alice and that is an awful story about your friend and her poor husband. What a thing to do. Yes, we are all in it together, we certainly are. Great to hear from you. with love, Kindredxxx
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
I have been a carer for my mother for nearly 8 years and concur with everything said. I have shunned a respite break for all the problems listed. I need a holiday and I think it would benefit my mother but we need to be part of a group and we have no family. I think a small ship cruise would be ideal and my idea is that if there were two or more carers then we could take turns in looking after our loved ones and get a break. Is anyone interested to discuss further?

My husband and I went on a cruise with my dad just over four years ago. Dad was not so bad then just a bit of a bumbler and a worrier. He was on a different deck to us and I spent the whole time worrying about him getting lost so we had to get up super early every morning to get to his cabin before he tried to find ours.

It was a lovely cruise and no doubt if it had just been us two we would have had a lovely time but looking after dad all the time was a real strain. We did every thing that dad wanted to do because he paid and I considered it to be his cruise. I went to a couple of talks that were given but dad did not enjoy them so my husband had to sit with him somewhere else. The trips ashore were very short as dad could not walk far so we basically walked to the nearest bar or coffee shop and sat there before walking back to the ship (we would have loved to explore)

Meal times were sometimes a bit fraught so we used the self service restaurant all the time with me over eating in an attempt to get dad to eat a bit more (I came home fat) We frequently changed chairs and sometimes even tables.

Yes definitely a small cruise ship because some of those bigger ones could cause endless problems and if there was two of you looking after your mum it could work well. It depends on how your mum is.

I would not take my dad away again but no reason why it should not work for others.
 

Herewego

Registered User
Mar 9, 2017
92
0
Interesting reading everyone's posts and can say I relate to most of them. My husband was only diagnosed last year but has had it (well I first noticed it) in 2011. Over the years we have travelled a lot firstly both of us had jobs that involved a lot of travel and then after I retired, we did quite a lot of travel. Since I saw this coming, in 2016 we took a month to travel to Canada to visit my family and my husbands cousin and his only sibling as I had already decided it would be the last trip we would do as it was just too hard - my husband became very confused everywhere we went and I was exhausted. I was glad we did it for him, but knew another long trip was not on the cards. Or so I thought! I then did a week with him and our dog in the UK which wasn't too bad. Then last Christmas I decided that we would go to Australia to visit our youngest daughter - OK seemed a good idea at the time - and in hind sight, it was a good holiday and could have been worse - but now it is definitely NEVER AGAIN.

So what now - since last year my husband has become much more confused, delusional and has constant hallucinations. I managed 3 nights away earlier this year when our 3 kids took on responsibility but 4 days was as much as I would ask them to do. We have decided that my husband is like our 21 mth old granddaughter but she is smarter than him e.g. she understands when you tell her to wait a minute etc - her grandpa doesn't! However, like a young child, you can't take your eyes off him at home or when we are out.

I managed a weeks respite at the end of August by sending him on a specialist disabled holiday and I got to stay home - used the time to clear out his study and loads of stuff from the house that was no longer needed/used etal - he never noticed anything when he came home. He enjoyed his holiday (he is always going somewhere/airport etc anyway) and the week 'off' was bliss!

What next - At the moment I have him attending a day centre 4 days a week and if it wasn't for that, not sure how I would cope! I am just deciding whether to send him 5 days - maybe after Christmas? He goes 9.30 - 3.30 - hated it at first, thought he worked there and kept saying he was going to resign, now he still thinks he works there but has stopped talking about resigning and speaks more positively about his 'boss' and the others there. The full time attendance allowance pays for about 2 days of attendance which helps defray the cost. As we are outside the free bus collection, I have to take him but friends have stepped up and take & collect on one day and our daughter takes him on one day.

I know that I will be going 'home' (Canada) next year and have already decided that my husband will have to go into a care home and will begin arranging that as soon as I know the dates. I am going to book him in for 4 weeks but be in Canada for 3 - gives me a few days at the beginning and at the end. I already know if he is like he is now, he will not like it but I am hoping it will assist with transition when full time care home becomes necessary. At his rate of decline over the last year, and especially the past few months, I suspect that may well be sometime next year. This trip is for a family wedding but I also know it is likely I will need to go home for my sister's funeral as she has terminal cancer and as my mom is 93 and not in good health, I may be going 'home' several times next year........

Just as the disease is different for everyone living with it - the solutions for respite also need to be 'right' for them and their carers - which can be trial and error - we can only do our best and sometimes it will work and sometimes it won't. Sometimes we also need to make hard decisions which may appear to be cruel, but I also believe that sometimes we need to be 'cruel to be kind'. They no longer know what is right for themselves and we need to make the decisions which are right given our personal circumstances, their well being and our sanity - nobody said it would be easy!
 

At home

Registered User
May 1, 2016
15
0
Interesting to read the effects on the pwd of respite. I'm still hoping to get some. I've been waiting 4 months now, since requesting a repeat carers assessment, and wondered if anyone has any idea how long this takes to come through? I've been back to the SW several times, but am told it's with the council commissioners. I've been caring for my mum single handed for 7 years now, and though she is now bed ridden & I have CHC carers three times a day, I just need a few hours off to myself.
 

davidsitges

Registered User
Apr 26, 2018
14
0
I am sorry to hear of the experience of wifenotcarer but I am very grateful to other members for sharing their experiences. I am just thinking about putting OH (PWD) into a home for the first time. Luckily here (in Spain) we have a home that does half-day or whole-day places so I can try that and see if he likes it. I suspect that he won’t!

After our last holiday together – only 5 days – he took a week to get used to being back at home. Any new environment is going to be confusing of course – so there won’t be any more holidays. Just hope that if the new environment is friendly, he’ll find some happiness there.

Hugs to you all,
 

AliceA

Registered User
May 27, 2016
2,911
0
Interesting reading everyone's posts and can say I relate to most of them. My husband was only diagnosed last year but has had it (well I first noticed it) in 2011. Over the years we have travelled a lot firstly both of us had jobs that involved a lot of travel and then after I retired, we did quite a lot of travel. Since I saw this coming, in 2016 we took a month to travel to Canada to visit my family and my husbands cousin and his only sibling as I had already decided it would be the last trip we would do as it was just too hard - my husband became very confused everywhere we went and I was exhausted. I was glad we did it for him, but knew another long trip was not on the cards. Or so I thought! I then did a week with him and our dog in the UK which wasn't too bad. Then last Christmas I decided that we would go to Australia to visit our youngest daughter - OK seemed a good idea at the time - and in hind sight, it was a good holiday and could have been worse - but now it is definitely NEVER AGAIN.

So what now - since last year my husband has become much more confused, delusional and has constant hallucinations. I managed 3 nights away earlier this year when our 3 kids took on responsibility but 4 days was as much as I would ask them to do. We have decided that my husband is like our 21 mth old granddaughter but she is smarter than him e.g. she understands when you tell her to wait a minute etc - her grandpa doesn't! However, like a young child, you can't take your eyes off him at home or when we are out.

I managed a weeks respite at the end of August by sending him on a specialist disabled holiday and I got to stay home - used the time to clear out his study and loads of stuff from the house that was no longer needed/used etal - he never noticed anything when he came home. He enjoyed his holiday (he is always going somewhere/airport etc anyway) and the week 'off' was bliss!

What next - At the moment I have him attending a day centre 4 days a week and if it wasn't for that, not sure how I would cope! I am just deciding whether to send him 5 days - maybe after Christmas? He goes 9.30 - 3.30 - hated it at first, thought he worked there and kept saying he was going to resign, now he still thinks he works there but has stopped talking about resigning and speaks more positively about his 'boss' and the others there. The full time attendance allowance pays for about 2 days of attendance which helps defray the cost. As we are outside the free bus collection, I have to take him but friends have stepped up and take & collect on one day and our daughter takes him on one day.

I know that I will be going 'home' (Canada) next year and have already decided that my husband will have to go into a care home and will begin arranging that as soon as I know the dates. I am going to book him in for 4 weeks but be in Canada for 3 - gives me a few days at the beginning and at the end. I already know if he is like he is now, he will not like it but I am hoping it will assist with transition when full time care home becomes necessary. At his rate of decline over the last year, and especially the past few months, I suspect that may well be sometime next year. This trip is for a family wedding but I also know it is likely I will need to go home for my sister's funeral as she has terminal cancer and as my mom is 93 and not in good health, I may be going 'home' several times next year........

Just as the disease is different for everyone living with it - the solutions for respite also need to be 'right' for them and their carers - which can be trial and error - we can only do our best and sometimes it will work and sometimes it won't. Sometimes we also need to make hard decisions which may appear to be cruel, but I also believe that sometimes we need to be 'cruel to be kind'. They no longer know what is right for themselves and we need to make the decisions which are right given our personal circumstances, their well being and our sanity - nobody said it would be easy!

Thank you for your insights and well balanced reply. I hope your plans go well, it must be hard being so far away from 'home'. There never is a right or wrong way is there.
 

AliceA

Registered User
May 27, 2016
2,911
0
I am sorry to hear of the experience of wifenotcarer but I am very grateful to other members for sharing their experiences. I am just thinking about putting OH (PWD) into a home for the first time. Luckily here (in Spain) we have a home that does half-day or whole-day places so I can try that and see if he likes it. I suspect that he won’t!

After our last holiday together – only 5 days – he took a week to get used to being back at home. Any new environment is going to be confusing of course – so there won’t be any more holidays. Just hope that if the new environment is friendly, he’ll find some happiness there.

Hugs to you all,

My sister lives in Spain and praises the health care. Half and whole day places are a brilliant idea. Here it seem two weeks in our area. I hope he settles in well.
 

Midow

Registered User
Jun 13, 2017
38
0
Wales
My OH is shortly going for a weeks respite, his first. I'm already dreading the confusion when he returns home and wonder if I will still cope with him. I badly need a break from him so need to give it a try. I won't be going away this time because there is a chance I will have a phone call saying they can't settle him. I shall report back on how it goes, fingers crossed.
 

AliceA

Registered User
May 27, 2016
2,911
0
My OH is shortly going for a weeks respite, his first. I'm already dreading the confusion when he returns home and wonder if I will still cope with him. I badly need a break from him so need to give it a try. I won't be going away this time because there is a chance I will have a phone call saying they can't settle him. I shall report back on how it goes, fingers crossed.
Good luck, even a break at home can help, so indulge and treat yourself. X
 

Midow

Registered User
Jun 13, 2017
38
0
Wales
Thank you, Alice. It will be wonderful to not clock watch to ensure I'm home for the sitter to leave.
 

Herewego

Registered User
Mar 9, 2017
92
0
Thank you for your insights and well balanced reply. I hope your plans go well, it must be hard being so far away from 'home'. There never is a right or wrong way is there.

Yes, it is hard being away from family but I have been here for 40 years now so have become used to the distance and thank goodness for technology!! It does not seem nearly as far with messaging these days sooo much better than 40 years ago when I first moved to the UK!! One of our children lives in Australia and it really helps with that distance too. I have been fortunate through the years to be able to afford a reasonable number of trips back and have family come to stay with us too.

You are right with dementia in its many forms every journey is individual as are the options/solutions to the various issues which arise. As carers we can only do our best for our LO's and sometimes we will get it right. We must not beat ourselves up about the decisions we make that go wrong as we are not going to get them all right.