Respite Cometh!: Last thing yesterday we got... - PSP Association

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Respite Cometh!

Kevin_1 profile image
38 Replies

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.

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Kevin_1 profile image
Kevin_1
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38 Replies
Spiralsparkle profile image
Spiralsparkle

I guess a bitter sweet news....

Is this your first time having respite?

I would imagine mixed emotions for you both indeed.

Is the bed at a place you know and happy with?

Sorry loads of questions there...i really hope it will be a positive experience for you both and helps clarify what you both need for the future.

Will be thinking of you next week.

Kevin_1 profile image
Kevin_1 in reply toSpiralsparkle

Thanks

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.

Many mixed emotions for both of us.

Spiralsparkle profile image
Spiralsparkle in reply toKevin_1

I will keep all crossed that this time is will be a more positive experience.

Take time to try to recharge and not worry too much. Easier said than done I would imagine.

X

Kevin_1 profile image
Kevin_1 in reply toSpiralsparkle

I am already worrying lol.

But that's good advice.

Thanks

Spiralsparkle profile image
Spiralsparkle in reply toKevin_1

I know personally I would worry but that is in my character to worry anyway!

Respite break isn't an experience I've yet had so can't offer any constructive words.

doglington profile image
doglington

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.

Love, Jean x

Amilazy profile image
Amilazy

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.

Best wishes and both of you enjoy the break

Tim

Kevin_1 profile image
Kevin_1 in reply toAmilazy

Thanks Tim

You're right.

I think I will do a few country walks.

I can't go away the Cat told me so!

Cheers

Kevin

Heady profile image
Heady in reply toKevin_1

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.

Lots of love

Heady

Kevin_1 profile image
Kevin_1 in reply toHeady

I will print this post out and pin it to the table where I have my morning tea!

Thanks

I know you are right.

xx

abirke profile image
abirke in reply toKevin_1

Good idea....if ever I get a respite, I will need Heady's....well everyone's words>>>>

Run with them K1!

Have fun

AVB

jillannf6 profile image
jillannf6

I AGRREE

LOL JI;;LL

XXXXX

Kevin_1 profile image
Kevin_1 in reply tojillannf6

Thanks Jill

I've passed that on to Liz too

Hugs

Kevin

xx

Yvonneandgeorge profile image
Yvonneandgeorge

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

Heady profile image
Heady in reply toYvonneandgeorge

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!!!

Lots of love

Heady

gypsywoman1947 profile image
gypsywoman1947 in reply toYvonneandgeorge

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

Heady profile image
Heady in reply togypsywoman1947

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!!!

Lots of love

Heady

gypsywoman1947 profile image
gypsywoman1947 in reply toHeady

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

doglington profile image
doglington in reply togypsywoman1947

Shout to your GP or community matron. Its crisis !!

Big hug, Jean xxx

Kevin_1 profile image
Kevin_1 in reply togypsywoman1947

Oh, GW

I thought I had it tough.

Thinking of you.

Kevin

xx

gypsywoman1947 profile image
gypsywoman1947 in reply toKevin_1

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 .

Xx

Kevin_1 profile image
Kevin_1 in reply togypsywoman1947

GW, I know that one too very well.

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.

Thank god for people like you on this site too.

xx

Kevin_1 profile image
Kevin_1

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.

It is wearing. Wishing you a break too.

Kevin

xx

Satt2015 profile image
Satt2015

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 ❤️

Kevin_1 profile image
Kevin_1 in reply toSatt2015

Thanks Satt

You are a brick! (Do people still use that phrase?)

Hugs

xx

Satt2015 profile image
Satt2015 in reply toKevin_1

lol thx K x

pzagy profile image
pzagy

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

Kevin_1 profile image
Kevin_1 in reply topzagy

Thanks :)

I shall post some pics next week... Though I am a rough gardener lol

Warmly

Kevin

DoreenC profile image
DoreenC

This is the problem Kevin. You don't want Luz to go away you want her right by your side the way she used to be.

Try and make the most of the break and re charge your batteries xx

Kevin_1 profile image
Kevin_1 in reply toDoreenC

Thanks Doreen

You and others here must have a camera in our house!

Every one of my little 'not doing it properly schemes' has been nailed.

I shall behave, I shall get a break.

I'm not good at that sort of thing so these posts have pushed me to behave!

xx

Heady profile image
Heady in reply toKevin_1

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.

Lots of love

Heady

jillannf6 profile image
jillannf6

GOOFD 4 U L ND JK

[OL JILL

XXXXX

honjen43 profile image
honjen43

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'!!

Jen xxx

abirke profile image
abirke

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]

AVB

Duffers profile image
Duffers

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

Robbo1 profile image
Robbo1

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

Julieandrog profile image
Julieandrog

Hi

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!!

Just a thought

Julie X

Kevin_1 profile image
Kevin_1 in reply toJulieandrog

Everywhere is full.

They are prioritising hospital discharges.

If they would give me a personal budget I could work in theissue.

Still fighting that one.

Waiving hello

Hugs

Kevin

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