First experience of respite- the story so far

tre

Registered User
Sep 23, 2008
1,352
0
Herts
My husband started his first ever week in respite on Monday afternoon. He is the love of my life. It took me a very long time to accept any help and I am still wobbling, terrified that he might think I have put him in respite because I do not love him any more.
My husband needs help 24/7 and cannot be left at all. Counting day care and a paid carer and Crossroads I have 19 hours help per week. There are 168 hours in a week so I care for him the remaining 149 hours. That sounds as though I resent it; I do not, these are just the facts. There is no other family on hand to help care for my husband. I am also a carer for my dad who lives independently six miles away. Dad does not have dementia but has severe rheumatoid arthritis such that he can only walk a very short distance, has has several strokes and heart attacks and needs to be taken to the hospital once or twice a month as well as other visits of course. I love my dad too.
When I left my husband at the respite on Monday it was so hard to walk away. He was so good about being left and made no fuss at all. As I walked out my heart was pounding and I felt I might faint. I had a little weep in the car before driving home. They were very kind at the respite and said they would ring me every day to let me know how he was getting on. I was really anxious as to how they might settle him at night and how he would manage at mealtimes as he needs a lot of help. The first night I did not fall asleep until 4.00 am worrying.
They called yesterday afternoon. He had settled well at night, was eating his meals and had joined in a cookery session. He was just being helped into his outdoor clothes so that he could go for a walk to the local pharmacy with the carers and another full time resident who has a dog. They say he has been asking for me but is OK when they tell him I will be back to collect him in a few days.
I feel so relieved. My main reason for accepting the respite was that my husband is so dependant on me that I worry what will happen if I have an accident or illness and cannoy care for him for a while. My hope was that if he survives the respite OK I will nominate this place in a contingency plan so at least there will be a safety net.
I had not thought about me. I was trying to remember when I last was not with him for 24 hours and the answer is October 2003 when he was still working on a part time consultancy basis and was away for a conference. On his way back from the conference he had an accident with the car where he hit a post at a motorway services and wrote off the car. Unknown to us at the time this was the beginning of his dementia which started by affecting his vision. He has not needed 24/7 care all this time but has become more and more dependant as the AD has progressed and has been unable to be left at all for over a year now. It is only since he has gone into the respite that I have begun to realise how tired I am. If you had asked me last week I would have denied it.
The fear monster is still nagging me that it is early days and it could all go pear shaped.
I was at a Caring with Confidence Course and I told them that I felt I left it too late before I admited I needed any help in the form of day care for my husband and I had been a fool to myself. Now it has dawned on me that maybe I have been in the same sort of denial about respite.
Accepting outside help does not mean I love him any less, but it does give me a boost which hopefully makes it possible for me to be the best and most loving carer I can be when I get him back
With fingers crossed it all continues to go smoothly
Tre
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
My fingers are crossed too. It sounds as if things could not have got off to a better start. I'm so pleased. But it must be one heck of an adjustment for you both.
 
Last edited:

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
0
Kent
You will be fine Tre and so will your husband.

I identify with much of your post. It`s so hard to hand the care over, not for reasons of possession or pride but because we don`t want our husbands to feel we have let them down.
But we do need to reduce their dependence on us and allow another presence. This is just in case we become ill ourselves.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
An incredibly helpful post Tre, as it covers so many issues which others are grappling with or anticipating. The fact that your husband appears to have accepted the situation is, I'm sure, proof that he not only feels secure when you're around, but also trusts you to do what is in the best interests of both of you.

Thank you very much. I'm so pleased for you.
 

jan.s

Registered User
Sep 20, 2011
7,353
0
72
Dear Tre

I was sat nodding and agreeing with every word of your post. I recognised the feelings and the guilt, but you are right to do this (says the one who never did).

Sadly my husband is in full time care now, but I also recognise the feelings of leaving him, wondering if he feels abandoned, and trying hard to let go. My husband has been in a very local home, but is soon moving further away, and I know I will have to let go. I shall struggle, but must do it for him. Much like you, we have not spent 24 hours apart, so to me it feels like losing my right arm!

It sounds like he is getting good care and people are keeping him active, not just sitting in the chair.

Please try to enjoy some you time. It will get easier, and knock the fear monster off your shoulder :). I am sure he will be fine. He will also be very pleased to see you at the end.

Thinking of you.

Jan x
 

nellbelles

Volunteer Host
Nov 6, 2008
9,842
0
leicester
Tre
I am so pleased that is going well for you. I have left Tom with a live in carer for the week and am glad of the break the chest and palpatations have stopped. It is hard to admit we need a break though. I hope you enjoy some me time over the next few days.

Love Helen xx
 

flowerpot

Registered User
Jul 27, 2010
2,450
0
65
Rural North Northumberland
I too was nodding in agreement at this post. Although it's not my husband but my MiL and we've just had our third respite and it's not until you take the plunge and do it that you realize how worn out you are. We need the time to recover so that we can carry on looking after them.

I'm pleased it's all going well and you try to enjoy the time to yourself too. Take care.
 

Jenijill

Registered User
Mar 12, 2012
223
0
Guildford
Well done Tre! You are very brave, I don't feel I could do it at all :confused:- I look after my husband 24/7 less 17 hours a week day care/paid care - and we also haven't been apart for 24 hours for years!!!

All will be fine, he's being well looked after, so just get all the rest you need and try and enjoy the freedom :)
 

muriel.elliott

Registered User
Aug 21, 2010
504
0
Berkshire
Hi Tre,
I am so pleased you did it at last. You so need and deserve the break. I know it must have been so hard for you to leave him there but he does seem to be coping very well. The home will look after him very well i am sure. How long is he there for?

I do hope your dad is still enjoying the scooter.

Please relax and try to enjoy the time you have on your own.

Much love and hugs Muriel xx
 

Sox

Registered User
Mar 12, 2011
325
0
Hello Tre - I can fully empathise with your post having been in a very similar situation last year. I too cared for my husband 24/7 with initially just 8-9 hours help per week and I refused to admit I needed a break. He had to go into emergency respite last November because he completely went "off his legs". He was in for 4 weeks while I had a shower-room installed downstairs.

He settled so well and I felt so much better I used respite breaks in the same home about every 12 weeks until just recently. Sadly his condition had deteriorated rapidly and he went in for respite 3 weeks ago, initially for 2 weeks but having taken advice from everyone I realised it was in the best interests of both of us if he stayed in permanently. It has been hard, but has been helped by the fact that he is so settled there, the staff already knew him (and me) and I know he is safe and well cared for. I think it would have been much worse if he had not been in several times for respite.

It's been very hard "letting go" and I too have feelings of guilt, but I know really I have done the right thing and I know it will take time but I can become his wife again rather than his carer.

Look after yourself, try to get some sleep and build your strength up for starting to care 24/7 again.

Take care. Sox
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Thanks for posting this, Tre. I'm so glad for you that things have started well, long may it continue. I wish my dad would take advantage of the respite he's been offered, but he's just not there yet.

Enjoy your rest, take care of yourself, indulge and pamper yourself a little and recharge your batteries.

xx
 

SWMBO1950

Registered User
Nov 17, 2011
2,076
0
Essex
Oh bless you. I can understand your worries but it seems as if things are working out well for his respite and you must take this opportunity to rest as much as possible ready for his return.

I am at my mums every day for varing amounts of time, but it is a drop in the ocean to your 'caring hours'.

Rest, sleep and use some of the 'me time' to maybe meet a friend for coffee or lunch or just put your feet up and read a book. Plan for his homecoming and make a special meal for you both and welcome him back with open arms.

You are doing a wonderful job and a few days respite does not mean you love him any less.

Very Best Wishes x



My husband started his first ever week in respite on Monday afternoon. He is the love of my life. It took me a very long time to accept any help and I am still wobbling, terrified that he might think I have put him in respite because I do not love him any more.
My husband needs help 24/7 and cannot be left at all. Counting day care and a paid carer and Crossroads I have 19 hours help per week. There are 168 hours in a week so I care for him the remaining 149 hours. That sounds as though I resent it; I do not, these are just the facts. There is no other family on hand to help care for my husband. I am also a carer for my dad who lives independently six miles away. Dad does not have dementia but has severe rheumatoid arthritis such that he can only walk a very short distance, has has several strokes and heart attacks and needs to be taken to the hospital once or twice a month as well as other visits of course. I love my dad too.
When I left my husband at the respite on Monday it was so hard to walk away. He was so good about being left and made no fuss at all. As I walked out my heart was pounding and I felt I might faint. I had a little weep in the car before driving home. They were very kind at the respite and said they would ring me every day to let me know how he was getting on. I was really anxious as to how they might settle him at night and how he would manage at mealtimes as he needs a lot of help. The first night I did not fall asleep until 4.00 am worrying.
They called yesterday afternoon. He had settled well at night, was eating his meals and had joined in a cookery session. He was just being helped into his outdoor clothes so that he could go for a walk to the local pharmacy with the carers and another full time resident who has a dog. They say he has been asking for me but is OK when they tell him I will be back to collect him in a few days.
I feel so relieved. My main reason for accepting the respite was that my husband is so dependant on me that I worry what will happen if I have an accident or illness and cannoy care for him for a while. My hope was that if he survives the respite OK I will nominate this place in a contingency plan so at least there will be a safety net.
I had not thought about me. I was trying to remember when I last was not with him for 24 hours and the answer is October 2003 when he was still working on a part time consultancy basis and was away for a conference. On his way back from the conference he had an accident with the car where he hit a post at a motorway services and wrote off the car. Unknown to us at the time this was the beginning of his dementia which started by affecting his vision. He has not needed 24/7 care all this time but has become more and more dependant as the AD has progressed and has been unable to be left at all for over a year now. It is only since he has gone into the respite that I have begun to realise how tired I am. If you had asked me last week I would have denied it.
The fear monster is still nagging me that it is early days and it could all go pear shaped.
I was at a Caring with Confidence Course and I told them that I felt I left it too late before I admited I needed any help in the form of day care for my husband and I had been a fool to myself. Now it has dawned on me that maybe I have been in the same sort of denial about respite.
Accepting outside help does not mean I love him any less, but it does give me a boost which hopefully makes it possible for me to be the best and most loving carer I can be when I get him back
With fingers crossed it all continues to go smoothly
Tre
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
The respite care have rung today to say he is doing well and not at all agitated. He does apparently ask after me but accepts it when they tell him I will be back to take him home on Monday.
Mostly I have just done normal things whilst he is away but it is quite relaxing not having to watch the clock all the time. I have been attacking the undergrowth in the garden and planting some bulbs for the spring. There is heaps of paperwork which requires concentration so I intended to do it this week but I keep putting it off whilst we have good weather.
Today I went to Cambridge and came back with two pairs of trousers and some CDs for David and a book for me.On Sunday I am meeting my daughter in London for lunch.
I had this awful fear that the respite would affect him as badly as it did when he was in hospital a couple of years back but it does seem that fear was unfounded. Of course there are more carers per resident than there were at the hospital. There are as many carers for the six bedded respite unit as there were for the whole 30 bedded ward in the hospital.
It was suggested I went away whilst David was in respite but I did not feel confident enough to do that. Perhaps if all continues to go well I might look at doing this again next year for a couple of days and having a short break.
thank you to all of you for your words of encouragment.
Tre
PS Muriel-dad continues to enjoy the scooter. I am hoping to take him out somewhere Saturday afternoon on it as there will only be him and me. I have made him some custom made mittens as his hands get cold when he is on the scooter and because of the arthritis he cannot get normal ones on . They look a bit like green fleecy boxing gloves but they do stop his hands from getting frozen.
 

kd7279

Registered User
Jan 13, 2010
223
0
Thanet, Kent
It was suggested I went away whilst David was in respite but I did not feel confident enough to do that. Perhaps if all continues to go well I might look at doing this again next year for a couple of days and having a short break.

Hi Tre,
I am in a similar situation as you with my wife.
She(I) had two weeks respite this last august and I booked myself a week in Malta. It was good and bad. Good as I had a great break in the sun knowing I had family around her at home should anything go wrong and, it's only a short Easyjet flight home, bad as it was peak holiday time and the hotel was full of couples.
She now is booked in for two weeks in February and I have booked myself for a week in Lanzarote with Saga. We had a holiday (probably our last holiday together) with Saga early this year so I know what to expect.
 

SWMBO1950

Registered User
Nov 17, 2011
2,076
0
Essex
How nice to read your update and glad everything is going well.

Good to read you are going out a bit while you have the chance. :)

Best Wishes



The respite care have rung today to say he is doing well and not at all agitated. He does apparently ask after me but accepts it when they tell him I will be back to take him home on Monday.
Mostly I have just done normal things whilst he is away but it is quite relaxing not having to watch the clock all the time. I have been attacking the undergrowth in the garden and planting some bulbs for the spring. There is heaps of paperwork which requires concentration so I intended to do it this week but I keep putting it off whilst we have good weather.
Today I went to Cambridge and came back with two pairs of trousers and some CDs for David and a book for me.On Sunday I am meeting my daughter in London for lunch.
I had this awful fear that the respite would affect him as badly as it did when he was in hospital a couple of years back but it does seem that fear was unfounded. Of course there are more carers per resident than there were at the hospital. There are as many carers for the six bedded respite unit as there were for the whole 30 bedded ward in the hospital.
It was suggested I went away whilst David was in respite but I did not feel confident enough to do that. Perhaps if all continues to go well I might look at doing this again next year for a couple of days and having a short break.
thank you to all of you for your words of encouragment.
Tre
PS Muriel-dad continues to enjoy the scooter. I am hoping to take him out somewhere Saturday afternoon on it as there will only be him and me. I have made him some custom made mittens as his hands get cold when he is on the scooter and because of the arthritis he cannot get normal ones on . They look a bit like green fleecy boxing gloves but they do stop his hands from getting frozen.
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
Hello KD
David is my second husband. I knew him from when I was 17 and he was married with a young son and I was engaged to my first husband who I married at 19 ( far too young). There was always a spark between David and I and, had we not been spoken for, I am sure he would have been my first husband but neither of us are/ were into casual relationships and eventually we lost touch and that was that except I never forgot him and as it turned out it was the same for him. My first husband led me a merry dance all our marriage and it was worse when we had children ( which he wanted so badly he gave me an ultimatum that if we did not start trying for a baby as soon as I had finished my degree he would leave me) as then he knew I was at home with the children and he could play around. Eventually, when our children were 10 and 12 he met a woman who wanted him as a permanent fixture so she blew the whistle. I had already taken him back twice but I was left so low I knew I was running out of strength to deal with this so we got divorced. Here is the amazing part. The woman who my husband ran off with he met through a local amateur dramatic/ singing group. He was in a show and he told me that there were no tickets left so the children and I could not attend. I was not at that time aware of the relationship with this woman so I accepted that. The day before the show I just happened to meet in the street another cast member who asked if he would see the children and me at the show. I explained we had wanted to come but it was sold out. No problem he said, you can come and watch from the lighting gallery. So we did. In the interval I went down to the main auditorium to get us some refreshments and was absolutely amazed to see David and his wife. It was not at all their sort of thing but they had got tickets because their next door neighbour was a member of the charity commitee that the show was raising funds for. We chatted for a while and during the conversation he mentioned where he worked. Months later, in dire financial straits, I wrote to him at work and told him what had happened. I asked him if he knew if there were any jobs going in the industry but unfortunately he said they were actually making people redundant. He asked if he could phone me occasionally to see how things were going for me so then we were in touch by phone every couple of months. So how did we end up together and married? Well after a couple of years he phoned me and I could tell immediately something was wrong. Turns out his wife had been having an affair with a chap and she had told David she wanted a divorce. They did try to reconcile but without success so she told him to see other people. Turns out I was the only other person he wanted to see and now we were both free. The first time he took me to anything ( in the early 90s) it was a concert at the Royal Albert Hall. I thought this was quite romantic because we had been to a concert of the same rarely performed Symphony of a Thousand at the same venue on a trip with a group from work back in 1976. His wife did not go because she hated the composer and my husband did not go because he hated classical music. We sat next to each other and it was a magical evening. When he picked me up for the concert in the 90s I felt in my pocket and bought out my ticket stub from the original concert some twenty years back which I had kept all those years. Then he reached into his pocket where he had his ticket stub for the next seat to me which he had also kept all those years. Sometimes it feels like a romantic film until you get to the bit where David got diagnosed with AD.
Anyhow the reason I let you know all this is that between my divorce and David and I getting together I had several years of doing things and going places on my own so I learned if you choose carefully where you go and what you do it is quite possible to go to events and places where you are not the only odd one and everyone else is coupled up or, even worse for a woman, where everyone else is single and if you talk to anyone they see it as a come on. I think I will have to polish up these old skills of selecting the right places if I do try a short break in the future although now I am 20 years older the second difficulty is probably not such an issue. I think if the break involves some sort of activity such as walking, painting or music it is probably easier. Also I was not thinking of out of UK.
All this might go out the window if David does not do well in respite.
I do actually think it was all meant to be and we were meant to end up together, maybe so he could have someone who loves him to care for him now.
Tre
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
A deeply moving post Tre.

I can relate to parts of your story. I too am married for the second time. I still count myself incredibly lucky to have met S, even though she has had dementia for most of the years we have been together. Like you I feel that I was meant to be the person who looked after her. When I think of how much love and affection she has given me, an amazingly greater amount than I ever received from the mother of my kids who I was with for over twenty years (for most of those years she was having a secret relationship with one of our 'best friends'), I know that S deserves to be cared for and loved as she has cared and loved for me.

Although I only had a year between being left by my first wife and meeting S, I felt O.K on my own though, of course, I was still recovering from the trauma. Admittedly, I almost expected to meet 'someone' (which I probably won't expect if S dies before me) but I can't imagine meeting anyone else who could match up to S.

I hope things continue to go well with the respite. I had one weekend on my own over a year ago (this was when S was considerably more independent than she is now and she went to her daughter's). Even though it was good to just be on my own, I was really pleased when she returned. I'm sure it will be the same for you.
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
I will pick David up from the respite on Monday morning. He is still doing OK but has had one restless night. He continues to ask after me which is better than forgetting me. I am crossing off the days until he comes home although I have been having a break. I really miss him. They said when they called on Friday that it would be a good idea to talk to him on the phone. I did. I told him I loved him and only a couple more days. He said he had worried he might not be coming home but I assured him he was and I was missing him. I told him I was very impressed with how well he was doing and we would be home together again soon. I had hoped because he is in a separate Respite Unit with only people who are on temporary stays he would not worry about not coming home.
I spoke to him again on the phone yesterday and told him I will fetch him before lunch on Monday. He said " I won't remember that will I?" I told him that it did not matter as I would certainly remember. He has never said he would not remember stuff before, although it is true. I just reassured him that I love him and we will soon be back home together.
The break has made me all the more determined to enjoy our time together when he comes home and be grateful for what we still have rather than scared what the future might hold. I am sure I will still get frustrated and not be as patient as I should sometimes but I think the break has been helpful.
Tre
 

kd7279

Registered User
Jan 13, 2010
223
0
Thanet, Kent
Hi TRE,
How amazing your tale is, as my wife is my second wife, and, my stepsister, so we have known each other for a long, long time (we are in our 70's)
This is one of my two days off (day centre days) so I can relax and Hoover through and do the ironing without worrying about what she is doing now in the house as she does tend to wander.
 

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