End of life care - help needed and a question or two

Replies

By lizzie_T

Re: End of life care - help needed and a question or two
Sat 12 Apr 2008 19:36

You are right. None of the ones we had knew a thing and were just an extra burden, refused to protect him and even put plastic pants on without a pad! You are the one who ends up training them.
You know she may not really need too much night care. You can borrow a hospital type electric bed. There are excellent ''huggies''type adult inco pads which are really good and do not leak - I never had to see to George and rarely got a wet bed, and the urine goes to the back of the pad, just llike babies and keep the skin dry. They should be provided by the District Nurses. Ours came in once a fortnight before he went into hospital. I always shared a bed with George anyway so was always there. Even in daytime I did not leave him really. I visited mummy for a week when George was ok - she was in London and I slept with her in the bed but she had not inco problems!, but then since our bed did not get wet it would not have mattered. Could you move in with her at night? With the right equipment, and unless she has nightly drips or something, she may settle down with you, if it is not going to be for long. George's mother died in the vicarage - I did not know him then - and that was what he expected being old school so to speak. They always had help in the daytime. She died peacefully. He said he lay by her side. Sometimes that is all it takes - it takes courage on your part too. I nursed my first husband's mother who died of cancer age 61 and she was absolutely no trouble at all once we persuaded her to come and live with us - it was kiling me going up to London all the time with three little children - 1971. Don't be afraid to try - no-one is going to blame you if you cannot do it, but if you know what is happening it is a relief. You are a good carer. Close your eyes, imagine a time when you were feeling really good about yourself, then picture yourself in a movie about the event: breathe slowly, play some soothing music. K N O W T H A T Y O U
A R E LOVE .......because you FEEL LOVED.
Then think about what you cannot do and do not stress yourself trying to do it. Just leave what you cannot do - and buy the CD I have just quoted from COPING SKILLS FOR CAREGIVERS by Madeline Singer PhD & Steven Halpern. put it into the player and go to sleep by it every night and any other time. It will soothe the patient too. I would not be without mine. Being there to hand the soul back is a priviledge people sometimes lose sight of because it reminds us of our own mortality. I still cry for my mother and she was 92! I feel angry at all that has happened to us and desperately wish she would answer when I yell for her help. Just know that you are love. It helps.

By EL

Re: End of life care - help needed and a question or two
Sat 12 Apr 2008 21:05

Oh my word! i am sick to the back teeth of hearing how the people most in need of support are being treated what the bloody el is wrong with these jackasses. It scares the life out of me to think i could be in this position myself one day, well you never know do you. we've got to do something about all this! i dont know what but this just cant be allowed to carry on. Any suggestions? could we perhaps swamp the powers that be with a petition? My heart bleeds for you guys wish there was something i could do

By mag

Re: End of life care - help needed and a question or two
Sun 13 Apr 2008 15:03

Hi Goodbye Girl

You need night-time help - Sorry I have no experience but I wonder, since you have been involved with hospice, would they be able to provide this, or suggest where to go for this kind of help? Another thought, what about Marie Curie nurses - might they provide overnight nursing?

I hope you can get the help you need in order to keep going. One thing I am sure of - your Gran will be aware of the warmth of your loving care.

Kind regards - Mag

By GoodbyeGirl

Re: End of life care - help needed and a question or two
Sun 13 Apr 2008 19:55

Hi guys,

Thanks for all the kind thoughts.

It all went slightly nuclear last night. My OH came back from a week-long business trip last night, and so from 1900-2100, I was off (other family in the flat). We were expecting an as-promised visit from the nursing twilight team for wash, pad change, settle for bed etc

Got a panicky call from my sis at 2100 saying that no-one had turned up.

My dad was calling the twilight team, then the hospice, triyng (we only have phone support from hospice, plus morning visit to help with bath and change). I think he pissed the nurses off - they said:

"But, we hear you've got a registered nurse there so we don't need to come out and we're really busy and we just can't come out"

RANT Since when did one person (registered or not) be able to lift, change pads etc????? And why the h*ll didn't they call at 1830 if they knew they were going to be busy - I would have stayed and done it and avoided all the distress.

My sister had tried to help our carer (an ex-nurse but aged 70!) with the slip sheet etc and failed, and was highly distraught because my gran was so visibly uncomfortable. And the pad (with shit) still needed to be sorted out - she just couldn't do it - slip sheet problems etc. We have pads with removable velcro sides BTW. We're OK for stuff (bed was on order, but not sure if still is - it looks like it's our problem to move her and I can't see how we could do it), although we need to find a way to get swabs on sticks, for use when she can no longer swallow but we need to keep her mouth wet. I will ask hospice, but any ideas welcome.

Our more experienced carer only arrived at 1100 yesterday to help with the terminal aspects of care, and she has said this is one of the worst set ups she's seen with visits etc.

She gave the district nurses some straight talking this morning and we are now waiting to see whether the twilight team turn up tonight. I will keep you posted

Anyway, back to last night. At 2100, I went around and helped as best I could. Then got home to discover that my dad was leaving to go home, and my sis was still sobbing. Calmed her as much as I could, sank two glasses of wine and tried to go to sleep.

I woke this morning after 5hours sleep and talked to my other half, in desperation, saying he had to take the lead for the day (we now had no idea if the team were going to turn up or not). I then conked out and have slept until now, on and off, and am starting to feel human again.

(he said I was gibbering; carer described me as walking like a rag doll - must be the exhaustion )

The crazy thing is that, if the nurses provide the support as they say, with no unexplained gaps, it's OK. I can cope OK with that.

It's the fact that you don't know whether they are going to be providing the same support in 12, 24 hours and so on.

I reckon we probably have about 4-5 days before carer needs night cover, and ths carer leaves 20th April (but I am confident our agency can sort something out). Marie Curie, hospice etc not possible because we do not have confirmed diagnosis of cancer. The fact that my gran is too ill to be moved to the hospital to get that diagnosis seems to be by the by. (Actually, she is not in enough pain for it to be cancer, I reckon)

On the positive side, my gran is slightly less at death's door (actually more like the garden path - we're not quite there yet) than yesterday

Thanks to all - no petition needed. Just let me come on here and rant as and when as needed.

GG
ps It's weird how every hour of rest/time off counts at this point. My OH said this morning he couldn't cope with the pad changing part so I needed to call in to check the nurses had arrived. That gave me a confirmed sleep window from 0730-0945 and it was the deepest sleep I'd had in a while. Thank goodness they did come - I suspect I would have been going round in my dressing gown.

By meg mackenzie

Re: End of life care - help needed and a question or two
Mon 14 Apr 2008 11:52

Hi GG

I was in a similar situation with my mum before she died two years ago.

She had dementia so could not go for a scan as she would not be able to follow the instructions. The lumps were obvious and she never complained of pain (the dementia again) but you could see the pain in her eyes. She was 82 and told the GP she was going to bed to "Wait for God"...He had no problem with this, but trying to get care was a nightmare. Luckily the homecarer who attended both mum and dad in the morning gave of her own time two nights a week to help at bedtime, the social worked often called in at a time I needed to do a pad change and as she was an old school trained nurse like me we managed very well. Macmillan cancer care was refused because of non-diagnosis, but Marie Curie did offer one night sitter after I had been 3 weeks with no sleep at all, barring a cat-nap at the kitchen table.

The GP was very understanding, but we could not get a morphine infusion for mum as the district nurses remembered her being needle phobic and violent with them, but the out of ours doctor gave me a direct line number to contact him and he attended every night to check she was pain free. She had phentonyl patches and the only fluid she could swallow was 50/50 ice cream mixed with oramorph and refrozed from a teaspoon.

At the end of the day she died was she wished in her own bed in her own house with her family beside her. Even after she died she did not leave the house until after her service before the funeral as that too was her wish, and the undertaker allowed me and my best friend to attend to her.

When people commented I was like a wet dishrag most of the time I just told them mum needed me to be strong for her and I could sort myself out when that need was no longer. It is amazing where you get the inner strength from, and it is good to know you have a supportive hubbie. Mine was brilliant and even put his own life at risk by not going to the doctor when he knew he had cancer because he felt my need was to have him there for mum. In the last six months before mum died the only time hubbie and I had together was two hours on a Friday afternoon courtesy of Crossroads and most times that was used for the weekly shop.

Luckily after a terminal diagnosis of six weeks my husband had a second opinion, five operations and a blood clot resulting in a wound the hospital said would never close, but we got there. He is still unwell most days, but is still here almost two years on, my miracle, my rock.

Perhaps Crossroads could provide night watch care for you. It must be worth the asking.

Take care
Meg

By GoodbyeGirl

Re: End of life care - help needed and a question or two
Mon 14 Apr 2008 13:14

Hi Meg and everyone else,

Well, the twilight team turned up last night :)

Meg - you made me laugh just now. I read your post (slept loads last night, and my dad is back to help too so I feel better) and thought "Crossroads" on the TV (my gran likes that too) and couldn't quite work out how that would help

I'd never heard of Crossroads the organisation, and there is one just around the corner. Thank you for that...

I feel a bit embarrassed asking them for help as we have a live in carer (and I read the stories on here and realise how lucky we are that she has savings and this looks like a "weeks not months" situation). I suppose there is a very small chance she might lift up a bit - she is still "there".

(Meg - I am so glad about your husband BTW)

OK - this post is just disjointed sentences at at the mo so I am off to nap some more

Am back as primary support for the carer as of 11 pm tonight so better store up some strength. Hospice staff warned us not to get burned out before the end, which is when we will all be needed.

GG