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View Full Version : Stressful Couple of Days.....nothing new there then!



Cookewitch
3rd January 2014, 14:50
Yesterday I had to dash home after being at work for only two hours as I got a garbled text from Dad, then he wouldn't reply. When I got home found the catheter bag full of blood....not just pink but full on red! District nurses came out and said it was probably a trauma from pulling it or something like that (lord knows when and how as I'm so careful with it and Dad can hardly move to pull it). They did a saline bladder wash and I'm happy to say we're back to plain old urine now!

Then last night when I went to take Dad to bed he couldn't stand at all, which meant walking was out. I managed to manhandle him into the transit wheelchair and pushed him to his room (first time ever the chair has been used indoors).

The job of getting him from the chair to the bed was horrendous....he very nearly landed on the floor but managed to get him on the very edge of bed and then had the struggle of him not slidng off. There was nothing he could do to help at all....nothing of his was working at all last night. I finally managed to get him in bed and plugged into his food pump.

I phoned the OT this morning with a view to getting a hoist and they wanted to put him in a home for a week whilst they got equipment in place which I was not happy with at all. They have now agreed that he can stay at home as long as this weekend he remains in bed (it is a pressure relieving hospital type bed) and that I have carers in three times a day to wash, turn etc etc.

It may be that he goes into the Hospice for a couple of days next week whilst they train me on the equipment and then back home where I will be able to transfer him safely.

It would seem the three times a day carers are until further notice and the OT is going to try and get the Continuing Health Care assessment pushed through so that I will know how all this is being funded.....my biggest fear is that we're going to be landed with a whopping great bill for all of this and no way of paying it??!??

I'm going with the flow re the care right now as, as they say, the most important thing is that Dad is safe and so am I....and I can assure you getting him to bed last night wasn't safe!!!

Hopefully tonights carers will help me get him in bed tonight if not I'm to phone the paramedics....and then he stays in bed until I have all the equipment....not going to be any fun for him or me!

berdbrain
3rd January 2014, 16:14
So so sorry to hear this, but the care assistants are wonderful at dealing with patients...I hope you get good ones...I can do nothing for you except give you moral support, you are wonderful and your Dad is lucky to have you, I hope you get sorted....keep being firm with the agencies, don't take no for an answer, stay strong, good luck and at least offload your frustration on here where everybody knows how difficult things can be.
with love and a prayer
XXXXXXXXXXDebbieXXXXXXXXXXXX

Terry
3rd January 2014, 16:53
It doesn't, it doesn't pour, you get a monsoon CW;

Phone hospice as they might be able to lend a hoist.

As regards to funds, your dad should have been accessed and if under a certain amount (maybe 16000) social services should I think pay.

Speech to Mnda connect about it as they will probably know.

All the best, Terry

gerald
3rd January 2014, 21:44
Hi cw. So sorry to read this post, i sincerly hope you can get carers to help, in our area care seems the easier help to get but the equipment seems harder dose not seem right to me. Hope you get some peace of mind mind and some rest regards gerald

ccinjersey
3rd January 2014, 22:08
Reading your daily struggles and challenges CW, I must say I echo Debbie's words, your one amazing Daughter! Every parent should be so fortunate and blessed to have a child like you. As difficult as it is you still continue onward to support your Dad in every way humanly possible.

I believe unless your in the trenches living it every day or mnd has effected someone you love, most people don’t relate to the devastating effects on all the lives affected by this illness. So much respect and admiration to you, and a well deserved pat on the back, which I’m not sure you receive nearly as much as you deserve.

Not familiar with your healthcare system or why it seems (to me) to be on the difficult side to have one’s medical needs addressed efficiently and in a timely matter, but again as Debbie said, do continue to fight for all your Dad needs during this most difficult time in his life. You are his voice, his advocate, and you are doing one dam good job! :)

Your in my prayers for continued strength, and do hope you have some time to take care of yourself. As a mom I have learned if I don’t take care of myself, I certainly can’t take care of the ones I love the most.

God bless
CC xoxo

Panda
3rd January 2014, 23:51
Cc its no wonder you struggle with our system in the UK as we don't understand it living here :eek:

The standing aid we now have for Dad is a great piece of kit albeit over engineered (it looks like it could be used to check a recumbent elephant for hemorrhoids):rolleyes:

It was brought in - in advance and everyone thought I was loosing the plot asking for it whilst he was partialy able but now it's used several times a day and all the carers are trained in its use.

Dad is over the means test but this was all free - if it is provided use it - you should not be given equipment you need to pay for!

thyrodia
4th January 2014, 07:26
Your Dads social worker should handle the funding the council Carers . palliative care team should work on continuing care funding.

Cookewitch
4th January 2014, 21:44
Had a bit of a drama getting someone out last night to get dad into bed but at last they did send two women.....not even sure who they were?!?!? All arranged by 111 and they used to be 'rapid response' but now they're called something else.....who knows....oh well they got him into bed at about 11pm last night so I could then plug in his peg feed and we could both get some sleep.

Had a full day of two carers coming in at 7am, 2pm and 8pm. All has gone fine they were both very nice and only had a small blip of one of them reattaching the feed so tightly I couldn't get it off and had to change the whole Y adaptor....fortunately I had a spare! It shouldn't happen again as I could plug dad in normal time tonight which means he'll be disconnected before they arrive.

So Dad has spent the whole day in bed as agreed, he had his radio on R4 for a bit but then wanted it off and has pretty much slept all day. Not sure if he's just tired from the late night last night or if it is a further deterioration.

I'll be glad when we have the kit in and I can get him back in the living room in his chair in the day time.

So I'm hoping for a calm Sunday with the carers in. The only fly in the ointment is no poop since Tuesday......and of course when he does go he's currently bed bound.....I've had to give him something tonight as I don't want full on constipation etc......I'm hoping he poops just before the carers arrive so that they can deal with it......keep your fingers crossed!

gerald
4th January 2014, 21:49
Hi cw. Glad to hear the carers are in and appear to up to your standard no what you mean about the poo situation. Hope you get some well earned rest and sleep take care gerald xxx

Cookewitch
4th January 2014, 21:53
Thanks Gerald.

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