Last thing yesterday we got a phone call from the CHC Team.
There is a respite bed on Monday for a week or a fortnight.
Liz and I looked at each other and both said a week.
Despite all we hate being apart and those places are not a lot of fun.
Yes, we are a little dumb!
Liz has a pack of girl friends coming over for lunch today and they are providing. They are wonderful friends they stick by her through everything. Last year the raised £2,500 for the PSPA through car boot sales and the London Marathon.
I am going to use the time to get the garden sorted out. I have barely been out there since the beginning of September... still time to get some winter lettuce and a few other bits in.
I should be jubilant... but I am at a bit of a loss really.
It is as it is.
Written by
Kevin_1
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We had respite there a year ago and six months before that.
It's a BUPA home which means its run with the finances paired to the bone (aren't they all?).
Last time she could not get a shower for a week - too few staff and the room was 35 degrees C because all of the radiator control valves were so old they didn't work (they are £6.00 ea.!!!) - She got dehydrated with the fans they put on her - it was winter at the time.
I was the same the first respite. Dead keen for the break but also at a bit of a loss. Second time I made plans and got away for three days of it.
Its similar to when we first started having time as a couple after having children. We would look at each other and say - " what did we used to talk about ? " Then we moved on.
This is worse because I'm not really wanting to move on, I really want to share what I'm doing with Chris. And so would he.
But you do need the break. Time for you and your garden and socialising.
Kevin it is usual to get the guilt trip but it is essential for you to recharge the batteries so you can continue to care for Liz. Besides the garden and sleep try getting out and doing something else,: theatre, cinema, pub. You can always visit the hospice but do not let the visits get too long or you lose the benefit offered by the break.
Hi Kevin, yes respite is hard, until you get use to it. Liz will be fine. The first time, when I saw two people struggling to do, what I do on my own, for S, it was quite a shock. But he looked so much more relaxed, as he felt safe. Something I can't provide.
You must plan your week, DONT let it drift. Organise sleep time, oblivion time and most of all, play time. I would suggest the cat goes somewhere safe and you get away, even if it's only for the night. DONT spend hours at the home with Liz, pop in a couple of times. DEFINITELY NOT at meal times and what ever you do, if she needs something whilst there, press the button!!!
Respite is NOT me time, it's vital to Liz's full time care. It is essential that you have a good time, do plenty of lovely things, laugh, breath, rest and sleep. You are doing this for Liz's sake and well being. So stop the guilt trip and start ringing around friends and family to see who can come out to play.
Kevin just enjoy your week off, by doing things you want to do!!!!! Will be thinking of you, just worrying about yourself.
I feel like throwing in the towel, I am so tired just want to give up, seems every time I sit down, our do something George calls me, either wanting the toilet , our needs moving in his chair, I am totally exhausted fed up and just don't want to carry on. Moan over Yvonne xxxx
Hi Yvonne, isn't time you got yourself away again? Or George into respite care for a few days. You have done so well in looking after him, don't let it all go to waste now,by burning out. If you crash, George will HAVE to go into a home, by taking short breaks will stop a crisis happening, that neither of you have any control over. You know my view on respite, it's either part time or full time.
Get on the phone first thing tomorrow morning to the CHC and tell them you MUST have a break! You are doing George no favours, by not taking this course of action, that we are extremely fortunate to have access to. USE IT!!!
Every time I read your posts Yvonne , I think to myself that it's exactly how I feel. I'm ready to throw towel in. My husband does not have a catheter and I am hauling him to loo on a Sara Stedy up to 12 times a day. It's heavy and I can't turn it , I'm 70 and I don't know what hurts the most , my legs,arms or back. Have asked for incontinence nurse to call, 2 weeks before she can come , she is adamant he does not need a catheter. He can't use a bottle, I can't lift him on and off commode , he won't wee in pads or pants, uses convene at night but says he can't use it in day. I got wait for the nurse to get here and come up with something. I can't struggle with this piece of equipment much longer. Xxx
OMG! Get the DN's in first thing tomorrow and get the Catether fitted. It is a life saver. I'm afraid this is where us carers have to throw our weight around and demand certain aspects of our lives have some control.
I wish S had had a Catether fitted at least two years earlier, it would have made the last couple of years of useful life, so much more pleasant.
I totally understand your predicament Gypsywoman, but you have to insist that your husband gets a Catether, or they will have to sort out the consequences!!!
Hi Heady , we don't have a DN as no catheter, incontinence nurse is our contact and she is adamant there is no need for catheter. Not coming to see us until Dec 2 , my daughter is coming that day to put the nurse straight !!!!! This Friday 25th is assessment for CHC , I can't stand much more. I'm crying, he's laughing, . I nursed a sister and both parents with terminal illnesses . Nothing, absolutely nothing compares with this , love and hugs xx
Mostly I cope Kevin but I'm one weeping wreck at the moment, the more I weep, the more he laughs. Thank God for this site and the understanding folk who make no judgement .
Liz has recently got a new habit. I am almost completely deaf in one ear following a diving event. My other is not the best. Liz, for the last two years, has talked to me when I am in another room, despite my protestations that I can only hear a few sounds and that she must summon me first. All to no avail.
Now I am coping with that she has taken to making loud noises in my good-ish ear when I lean close to move her. It leaves it ringing.
PSP - It's a dastardly thing.
I feel like I scrape myself up off the floor and get knocked down again - every day.
Those that have gone before me on this site and those coping with similar struggles are what keep me going... along with a very deep love for Liz.
You describe it well. I do hope you get a break too.
I shall make the most of it.
Y'know it hit me the other day. Unusual for us we decided to have fish and chips. There is an award winning place near us. We were in the car anyway and so we drove over. I left Liz in the car and it turns out everything is cooked to demand. So I just sat down and waited. The pure pleasure if sitting without interruption. The fish was superb as well.
Kevin, you NEED this time!! As does Liz! Hard though it is, try and relax into it, do the garden, go on walks and most definitely go the pub for a pint or two! These respite breaks are an absolute must for all!
Also I must congratulate Liz's friends! They really did brilliantly raising all that wonga!!
I hope your having a nice day today and will get some added relaxation when liz's friends come over....hugs ❤️
think of it as a recharge for you and a much needed break, absence makes the heart grow fonder...best of luck to you and post some pics of your garden, I absolutely love English gardens
We don't need a camera Kevin, we are just like you. All of us can talk the talk, you included my friend! But yes, it is hard to actually do the things we all know we should. I am one of the world's worst for dishing out advice and ignoring it myself. The days I can follow it though, make SUCH a difference to me and to S. My mornings off, I now am slowly getting into a routine and the respite weeks, I get away as much as possible. I stay with my sister mostly, as she is only 1/2 hour drive from me.
Dear old Frankie had it right, there is only one way to do things, that's "MY WAY"!!!!!!! But that doesn't stop any of us, listening to a bit of good old fashioned advice.
Have a plan, Kevin_1 ! But you don't have to stick to it. Get a good book. Catch up on TV - if you have had chance to watch recently(?!!). Make sure you spend some time sitting down doing nothing. Chores and garden will wait!
You will get thru! Hope you will get your recharge!
Liz too! Hope the heating has been fixed. Nothing worse than being stuck at 35'!!
Quiet time ....or time for yourself....for the sake of your wife, enjoy what you can ,,,,no worries no guilt just put in the lettuce hang out with a friend go out to dinner....the week will fly by and if used wisely you will come back with the fortitude to continue feeling joy as you work with your wife....It is what it is ......so make it a good is hahahhah]
Its strange that when we get freedom from our caring role we dont always know what to do with ourselves. I only get a day a fortnight and i have to plan or im just like a headless chicken. Odd really. . Anyway kevin you will be able to recharge your batteries to further care for your loved one when she comes home. Im sure youll spend several days in the garden as they all seem to be a bit sad looking at the moment. Mine is anyway. Take care and hope it stays dry for you. Nothing worse than plodding round in a muddy garden. All the best. Marie
It is so hard isn't it, Kevin? I keep being told that I would benefit from respite, but at present, I think I would be so stressed about B. it would be wasted. I hope the weather is good and you manage to get the garden sorted. There's nothing like fresh air and gardening, it's good for the soul as well as the body. Warm wishes to you both. X
I found care like you not up to standard. CHC are funding four days live in this time, may suit better but obviously to be of any help you need to go somewhere Else!!
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hahahhah]
Forever Friends - Respite Care
