horrendous few days!.....get ready for a long post!

Everyday living
1

Hi guys. Not been on here for a few days.

We had a crisis situation in our house on Wed!

As most of you know, hubby is my main carer and i depend on him heavily.

He has both rheumatoid and oesteoarthritis. It has been very bad for most of the year.

he normally injects once a week, to keep some level of pain relief…but it hasn`t helped so much this year.

Anyway, 2 weeks ago, he saw his supply of jabs dwindle and normally gets a call from the supplier to arrange next delivery, The call didnt come. So he rang them to ask about it. They said they hadnt received the next script. Hubby rang the hospital and was told by the nurses that the pharmacy had the script. he rang pharmacy and was told they hadnt got it.

more phone calls ensued and promises of well look into it``…brought no results!

Hubby`s pain level was rising…His ankles were sooo bad and his walking hurt like chuff!..

In the early hours of Wed, he had to rush to the loo 3 times…diarrhoea…but each `rush`` became harder and harder. Then I heard a BANG!!! He had fallen getting back into bed and i had slung up and was getting onto my hoist and asked for help.which he couldnt provide…hence I did a Niagara Falls impression all over the commode, floor and part of my bed! The sling was wet too, as was my nightie.

I pulled my sheet off my bed, grappled with my nightie drawer, for a clean one, behind me and got back into a cold bed!!!

About 3 hours later, hubby tried to get up,. he was in a terrible state…He was lurching from our bedroom to the bathroom and i told him to use my wheelie…which he actually did…that`s a first!! by this time, I was back on my commode, with a towel round my legs, not knowing what to do next!

i shouted, What shall we do now? he replied to ring for help, as he couldnt get to me.

i rang my daughter, who was off work with a tummy bug…I didnt know that at the time. She lives a mile away.She didnt answer her phone. I rang my sis…one of my carers, who had only gone home after a sleepover the day before. I cried, Grahams fallen. he cant walk. hes using my wheelchair. I dont know what to do! She said, Im on my way!` She lives 6 miles away.

Daughter arrived. Right, Which one needs me first? I said to see to dad. She got him out of the wheelie and onto the sofa. Then she got him some painkilllers and rang our GP.

Then sis and hubby arrived and leapt into action.

What I havent told you before now, is that bev, my morning carer has been off sick for a few weeks, following a knee operation. we were muddling through without her…big mistake!!!

next, daughter rang crisis helpline. She explained everything and asked for help.

I was offered 2 choices…

  1. i could go into a nursing home for a few days.

  2. Someone would come and stay with us for 48 hours…it might be a man they said.

i didnt really want to do either and got all of a dither!

Then sis said shed stay till weekend. id like that idea.better.

GP came and examined hubby…no broken bones…but I thought an xray would be a good idea. Doc didnt!

next she rang rheumy dept and said what was what. we were promised a call back…didnt get one!!!

Thursday…I rang rheumy nurses and got a real live person!!! Wow…wonders!

They told hubby they would speak to someone and ring back. they did this time and he had a 2pm appointment.

Daughter and fella Mark came. he was going to take my hubby to hospital.

daughter gave us a talking to …saying we need more carers…we have no back up like now, when bev is off. Sis has been doing an extra sleepover (unpaid) and 2 mornings care stuff for me.

Then daughter got up to go into kitchen and almost fainted!!! she was taken home by mark and put to bed. so he couldnt take my hubby to hospital appointment afterall. He has a steroid jab

So bro-in-law did it instead.

Today, sis has gone home after looking after me so well.

Daughter no 2 has come from 75miles away, having left her 2 girls with soon to be ex ma–in-law! She has taken over my care and is sleeping tonight.

Then she gave me a talking to re having enough carers to cope when one is off sick! fair cop, innit?

So what happens now?

Well, on Tuesday a social worker is coming to do me a re-assessment and i hope i get extra Direct Payments to pay for more help.

I need care 7 mornings a week, a put to bed service 7 nights a week. 2 sleepovers a week, respite funding for a hol next year, with 2 of my carers. Oh I have just found out about a daycare centre, which i`d like to go to too.

Hubby is now full of vigour and doesnt like our daughters telling us what to do!!!

Thats it. Im knackered!

luv Pollx

2

Well. Phew! Poll that was some week you had there. Knackered me just reading it… no wonder you’re knackered!!!

Thank God you are getting some extra care… and NO more managing without a carer. I’m so glad things seem to have settled down now and hubby ok now.

It all sounds like a complete nightmare… but thank God for family eh?

Try and rest now hon and get some energy back.

Love Pat x

3

OMG Poll! That is a week from Hell. So glad you and hubby survived it (just). No more ‘managing’ without a carer when yours has time off! I hate having a stand in for my regular carer too but far better to be safe.

Have a lovely restful week this week

B xxxx

4

Gosh! What a difficult week Poll. I hope you are both OK now. I hope the social worker manages to give you more care options, so that this doesn’t happen again. It’s a good thing that your sister and the girls could drop everything. Take lots of care, Teresa xx

5

So sorry to read this Polly, my mum had both kinds of arthritis so I know how painful it can be. I hope you get the help that you need and next week improves for you both.

Wendy x

6

Flippin’ 'eck Poll - what a nightmare! I do hope you get the funding sorted out to make sure something like this never happens again.

(((((hugs)))))

Karen x

7

Crikey Poll what a hec of a week you and hubby have had. You must have more carers, doesn’t it make you feel so vulnerable when you are immobile and something happens to your other half. I hope your hubby is out of the awful pain now and you are comfortable. Do take good care, thinking of you. luv Linda x

8

hi poll

i’m so sorry and quite horrified at what you have been through.

thank god for your sisters and daughters, it doesnt bear thinking about what would have happened if they werent there.

i hope you get some good support from the social worker

wishing you both a better week.

lots of love

carole xxxxxxx

9

wow!!! just glad there were no broken bones n ur both safe n sound now fingers crossed the social worker is one who will actually listen to ur concerns n tries their best to get the extra help that is so badly needed take care, stay safe Lou :slight_smile: x

10

Hello Poll,

I am sorry to read of your taxing week. Things couldn’t really have got much worse could they? I hope that things are more settled now. It’s amazing how our lives change when there is a chink in our support networks. I hope that you can relax a bit more now and that now you’re back on plan.

love,

Moira

11

Hi Poll, poor you and your hubby, what a flippen time you are having. Hope you get somewhere with your social worker try and write every one to ne hour you need it will help with the assessment. Ask for more than you need and then if they offer you less it might be about right. I really hope things get sorted quickly you can’t go through anything like that again, thank god you have a supportive family. Take care love Karen xx

12

Blimey what a time of it!

I really hope you get the care you both need and quickly. Don’t be afraid of demanding! Those who shout loudest get seen to first - it may not be your natural way but you may need to do it. Be a pest to them when they don’t phone back, keep on and on…

All very exhausting. Big hugs and love to you and keep us posted, Debx

13

Phew, yeh! It really was as bad as it reads.except a bit more so, as i didnt mention about hubby crying with pain and worry…that it just so not him!

Thanks to all my lovely concerned friends here.

daughters have gone home. they gave us another ear bashing today re getting more help lined up.

Thing is, i`ll do so and have written out a timetable of what i NEED and when.

What puts a spanner in the works is when hubby feels better (like now) and says Im fine. I look after your mum!`

But no, this time, I am disregarding what he says and will defo be telling the social worker just how bad it was.

Another thing I want to change is the type of ceiling hoist i have. There is a track in the bedroom and a track in the lounge (bungalow). When I get in/out of bed, I use the hoist. When I get in/out of recliner, same.

But in an effort to keep some standing strength, when I need the loo… (I sit on commode over the loo,) and use my patient turner (Tina), it is sometimes difficult and the back of my knees hurt, but I need to keep this action as when I go out and use public disabled loos, my 2 carers help me up, press my knees to lock them and turn me round and down onto loo. So, the thing is, if I stop transferring with Tina, my legs will collapse altogether. Are you following this?

Where was I?..Oh yeh, the ceiling hoist arrangement…my current one is a portable one, in that when I want to go into recliner, the hoist itself has to be lifted off the bedroom track and carried into the lounge and clicked onto that rail. Oh this is hard to explain…you still with me?

Now then, if ever hubby is feeling rough, I dont use the recliner, to save him carrying the heavy-ish hoist from room to room. So I either stay in my wheelie and get stiff or lie on the bed, in isolation!

So, the alternative, which I shouldve got, is one that has its own track and therefore I`d need 2 installing, and they need to be wired up. Currently the hoist is charged up with a trailing wire from the floor socket to it. Not exactly health and safety issue, as hubby has tripped over it a few times!!! Oh, no the very thought of…no!

Eee, what a fun time we`re having eh?

Thanks for taking the time to read and understand my waffling…if you did!

luv Pollx

14

Hi Poll

OMG or should I say chuffin 'ell, but it’s obvious you both need

more help than you are getting, especially when things are not

the “norm” shall we say.

As well as having more carers and help Poll, it maybe worth you

enquiring about a lifeline from your local authority, as this would

have been useful for you both the other day. YYou only need to

press a button and tell the person that you need help, and they will

arrange some to come for you. Also does your gp

have it noted that G is your carer, cos they have a plan of action

should he be taken ill.

Hope all is better for you both, please take care.

Pam x

15

Oh Poll, that sounds awful, I really feel for all of you. You’ve had good advice about getting extra help so please make sure you do get it sorted out. I hope you are both feeling a bit better now. There’s never a dull moment with you is there? Cheryl:-)

16

Ooh - I’ve a plan - you need to have your tracks rebuilt as one single system by a roller coaster expert so you can whizz your way around anywhere you like whenever you like. You could even put a loop-de-loop in somewhere!

Seriously…Make sure you get that lifeline button for instant assistance - you shouldn’t be left floundering and struggling, this is a really difficult and serious situation for you both.

Dxx

17

Hi Poll, well what a week you have had it put my weeks moneing to bed. senting you both big ms hugs . My week was just me having a off week l think it the build up to chrismas l hate it not been able to go shoping not haveing the money to go with the cat not been to good two jabs £50 and having someone to take her again.well keep your selfs warm hope you are not hit by the floods my brother is. heavy rain high seas its all a round his bungalow. lov to all regards Jan xx

18

Hi Pam, Cheryl, D and Jan.

Thanks ever so for your helpful replies.

I am feeling really dizzy today. brain overload!

Made some calls. Spoke to OT re the hoist. Get this…this morning hubby noticed the strap is fraying. This hoist is a replacement for the original one, which was just under a year old and it`s strap frayed., so badly, in just 3 days! So I told OT and she said it needs urgent attention. Engineer is coming tomorrow at 9am.

Social worker coming at 10am.

i`ve been plotting timetables for my care needs. My head hurts.

ttfn

luv Poll…

19

Hello Poll,

I am pleased that you are going to receive more help from the powers that be. It is always a good idea to have a 100%, solid gold plan B, and why not a C and D too. It is frightening though isn’t is that the “new” strap was fraying already isn’t it. Let’s hope that the new set up is far better.

Good luck,

Moira

20

Me again! Hoist engineer came this morning and said hoist strap isnt bad enough to swap! Oh so I have to wait until I am literally hanging by a fred, eh?

OT is coming tomorrow to talk about a change of hoist type.

luv Pollx