my hero : I have had a terrible two weeks... - PSP Association

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my hero

wheelrace profile image
10 Replies

I have had a terrible two weeks fighting G

eoffs corner my daughter in law has been a star and kept me battling on the change in Geoff in just two weeks is astounding I have cared for him for four years he got pneumonia was admitted to hospital and boy has he gone down hill the pneumonia came back twice he has dysphagia at stage three So totally puree diet they have told me the pneumonia will come back without doubt but he has elected to stay at home if it comes back they have fast tracked hoists a special chair and other equipment so he can come home next week he is fed up with his situation we are still not sure about chc yet although I have spoken to our district nurse helen and she said if they don't put him forward for assessment then she will unfortunately she is retiring at the end of may and shes really good my head has been in turmoil I am so tired with this battle I am now being told by the hospital that Geoff is going to lose a lot of weight and to check his skin everyday I worry about what standard of care will be given by our doctors practice because it has changed so much but it has always been geoffs wish to stay at home so without doubt I will do my best to keep that promise my family are superstars they have given me so much support I have a meeting tomorrow with the ward sister she said she has two types of care forms so I will keep you up to date on how we progress thank you all for your support especially kevin my family think your a superstar and I will sack my daughter in law just so we can invite you to the party private joke !!!!!cant do a smily face so good night from the wrinkly

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wheelrace
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10 Replies
doglington profile image
doglington

Well done. I know how exhausting it is. Yes Kevin is a star !!!!

Have you contacted the hospice ? In our area the hospital arranged palliative care by the hospice, which was excellent. They did all the changing and skin care. You will need help to nurse him at home. It can be done but not alone.

Jean xx

Yvonneandgeorge profile image
Yvonneandgeorge in reply todoglington

Agree with Jean, hope all goes well, so Geoff can come home with everything in place for you to be able to care for him. Sending you a big hug. Once again how would we be able to do all this with Kevin, he is always there to help us all, Kevin you are amazing. Yvonne xxxx

Cuttercat profile image
Cuttercat in reply toYvonneandgeorge

Ditto, Kevin!!

Cuttercat

raincitygirl profile image
raincitygirl

Dear Wheelrace: It sure sounds like a rollercoaster! But it does sound like things are in place for Geoff coming home. You've done a great job taking care of him so far, and I'm sure you're going to continue to be great :-)

Keep us up to date, and be sure to ask Helen who you should talk to once she retires at the end of the month. Hopefully, she'll fill her successor in so you don't have any gaps.

All the best :-)

Anne G.

Spiralsparkle profile image
Spiralsparkle

So sorry you have had to battle a system that should be helping you both. It sounds like though things are moving in the right direction and your beloved will be home soon.

I echo what others have said about hospice if you aren't already under their services.

Hopefully you DN will handover to her successor and you will have another good contact to call on who will be able to get the GP practice in order if needs be.

AnneandChris profile image
AnneandChris

So sorry to hear all this. You are doing a wonderful job. Just keep on, keeping on and good luck with all that you are doing for your loved one.

LostinHeadSpace profile image
LostinHeadSpace

Wheelrace, I think you're the hero!

Kevin_1 profile image
Kevin_1

Hi Doreen

Be very careful about what you are asked to sign.

If they are social service documents I would strongly recommend you bring them home and go through them carefully. If you sign up for social care the NHS might try and pull a fast one and say that care is already arranged and that don't need CHC. This is unlawful, but they might try it.

Best to you all and thanks for the praise. I am now going out into the garden to dry my newly dyed red and blue underpants and tee shirt. ;)

Warmly

Kevin

PS I agree with Lost - You are the hero here. You have doggedly held on fighting for Geoff no matter what. He could not have had better. I have great admiration for you.

Marie_14 profile image
Marie_14

What a lot of progress you have made? You can ask for district nurses to come and check his skin. Just say he's too heavy for you. That is probably true anyway? I hope the hospital applies for CHC but if not ask Helen for help before she leaves? Good luck and well done. You are lucky to have such a great daughter-in-law by the way. Give her a great big hug!

Marie x

Artteach10 profile image
Artteach10

Sending best wishes and hugs, Nancyx

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