B went into hospital 9 days ago with groin pain. After several scans and lack of peg feeding for 33 hours, they decided not to operate on the two hernias that they had found. ( Our doctor had already found them by hand examination, 50 hours before they found them and after they did two scans!)
B became comatose and slept for three days.I rang our Hospice Community nurse and she recommended a full palliative care assessment.
B. is now in a palliative care unit at the hospital. Could his sleepiness be due to previous lack of food and medication or PSP?
We are Hoping that we can get him home with some sort of nursing support. ( We are still waiting for our CHC appeal meeting.)
B. spun his wheelchair and fell out of it whilst on holiday. He sustained head injuries but three days later, his right hand drooped and is now useless. The doctors think this is due to PSP. Do any of our community recognise this symptom?
Any suggestions would be welcome. X
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Robbo1
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Thinking of you. This so hard. I am glad hospice is involved. We are just getting hospice started here in our little town. We so need it. God be with you and give continue to give you strength and peace.
Hi robbo. If B has a peg, which needs monitoring, and will spend lots of time sitting or lying, which are skin care problems, then hopefully the hospice nurse will help you get fast track care in place. Good luck.
B has had a brain scan, an MRI brain scan , an upper body neck scan and two lower abdomen scans. He has a bleed where he hit his head, but they think that has stopped bleeding now. They think his useless hand is down to PSP or nerve damage, nothing to do with the head injury. They could apply for fast track CHC, but it would be reviewed every six weeks and if B showed any improvement, funding would be removed. They think they are going to apply for CHC from scratch.
I am so tired from it all. The Macmillan Palliative Care Unit is good, but I still have to fight his corner. Yesterday it was to get an elusive bedpan. Too late when it arrived, causing distress. Today when I arrived, he had no clothes on under the sheet apart from a shirt. No one knew why.
His pyjamas had been put in a bag with his other clothes. They had been there for at least two days. Nobody told me that they were wet and when I found them, stinky. I thought they were clean and had wondered why they hadn't used them.
He is in a nice ward with three other beds. Sadly, on the first day, one of its patients died and had to be taken away. As I came out of the day room where I had been on the phone, a weeping family passed me to go in.
It's all so sad. I wish I was stronger so that I could bring him home and take care of him myself, I feel as if I am in a nightmare.........
No it is not reviewed every six weeks. CCG can review it when they want, but:
"Once Fast Track Continuing Healthcare funding is in place, it should never removed without the NHS going through the proper review process, i.e. a full assessment process carried out by a multi-disciplinary team (MDT). This ‘full’ assessment process uses a form called the ‘Decision Support Tool’ (DST). Only once the Fast Track assessment is complete and funding is put in place should an MDT review process ever be started – and only if this MDT assessment is really necessary. This full MDT assessment process should never delay urgent Fast Track end-of-life funding and care."
So it is not an every six week cycle. The fast track is merely getting the care in urgently. We were on fast track for 18 months without a review!
Thanks Kevin. I was told that the fast track was reviewed every six weeks by a doctor today. I wouldn't put it past the Sheffield CHC lot though. They seem to make rules up as they go along. They awarded B nursing funding then changed their mind saying that as I was providing it, B had no nursing needs.
I shall try to speak to the doctor tomorrow.
I hope things are a little easier for you both at present.
I am in a cocoon of denial which just cracks now and again. It's good to have knowledgable people like you who offer help support and advice.
Chris was fast tracked for palliative care from hospital. They told me it was initially for 12 weeks but not to worry. So I'm not.
I don't think its CHC as all assessment was done in hospital. It seems to be different every where. I'm just counting my blessings and crossing my fingers !
Robbo, The same thing happened to my husband about a month before the end of life. His lower half was naked under the sheet! I asked him why he had no clothes on and he didn't know. I think it's to make life easier for them as they don't have to remove clothes when someone needs changing! The result of this however was he started to remove his convene so they then had to change the sheets!
They did wash his clothes but a few things we never saw again! Plus they kept insisting a particular shirt was his! I kept giving it back only for it to reappear again! They were adamant it was his! So I guess he was going shopping behind my back!! 😕
Take care and just shrug it off. However if you have had to wash someone else's clothes I would be asking what is going on. I was forever complaining about clothes!
Thank you, Marie. I think you are right. When I spoke about my concerns today, the nurse told me that the person who left B like that , said that he didn't want anything on. I said that maybe she misunderstood him!
How are you Marie? After bearing all that stress and hard work, then losing your loved one, how do you cope? I am shying off from thinking things through at the moment, its too painful. Bless you for your support. RX
Robbo you just have to cope? It is very stressful as you know. However when it's all over there is a different kind of stress. People avoid you. That hurts but nothing I can do? Oddly enough the next few days are busy but when they are over I won't see or hear from anyone for maybe 2 weeks. That is the worst part after all the days which were mapped out and my life put on hold. It's really hard to deal with. I like being with people so it's very difficult to not see or even hear from anyone.
Thank you for asking Robbo.
Hope now they know you are aware of what is going on your husband will be given more consideration.
Thank you Marie. It is strange already not having our carers calling. I talk too much when people ring or do call as I am so stressed and a bit lonely.
To add to the story, I have found a pair of urine soaked trousers and shirt that aren't even my husbands. Now I have to wash and dry them to take back. I suspect they were put in his bag while he was in the previous ward. No wonder it was heavy carrying it home. It's so crazy it's almost making me laugh, (maybe a bit hysterically!)
Its good to offload to people who know how I feel.
Oh, that's awful! Do laugh, hysterically or not. Honestly, it's hard to believe how much laundry I used to do. If someone had given me any more I can't imagine my response!
B. is still in the Palliative Care Unit. After my son got involved and lodged a complaint about our CHC refusal, a nurse came to see us at the hospice today. Still no mention of CHC, but instead, some nursing care for B at home. That is four visits a day to peg feed and medicate and two night visits to turn him. No mention of toileting, washing, dressing etc.My back and neck are so painful now that ordinary painkillers do not work. My daughter came to speak and take notes at the meeting. Thank goodness, as I am worn out with it all.
We want B home. The consultant gives him about six months, but said that due to his weak condition, he could succumb to pneumonia or other infections at any time.
Sorry to moan, but my cocoon is cracking, I can't bear to see B in pain, as he is at present and it's unbearable not to understand what he is trying to say.
I recommend ice packs for you (until you can get a massage someday) and tender hugs and kisses for B. I understand and feel for you. Love and peace, Ec
I expect they will toilet him etc. We have hospice care at home and they look after him so well. He is creamed and shaved . Chris is incontinent and bed bound so we don't put trousers on him. Its more convenient. Not being able to communicate is so hard. That and the choking reduces me to tears. I just wanted him to come home and so did he.
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