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End of Life Advice

Jaded'n'faded

Registered User
Jan 23, 2019
3,198
0
High Peak
Hard to believe your mum was turned down for CHC!

What a battle you are having with funding. The last thing you need is a fight between the city and the county over who is responsible for your mum. It's appalling and I hope you will make your feelings known.
 

15moterbike

Registered User
Jan 17, 2022
131
0
Very true Sylvia. I was thinking of it more from the prospective of mum being distressed by having the injection as there's no muscle left on her as she's been bed bound for 9 months now and has lost a lot of weight in that time (over 3 stone). :)
I can always totally agree with all you say being in such a similar situation . My mum has terminal restlessness she still gets distressed but as she still eats a tiny amount staff are reluctant to sedate her . It’s torture . She is a skeleton what a lot of people don’t realise is that just because people are eating a tiny amount they are cachexiac and nothing absorbs . Mum eats then often chocks needs suctioning . She has skin tears and bruises where skin is so thin. She didn’t have the 3 re booster I Said no but I’m waiting for a call this week about 4th and have given up the fight now if they can find some skin to inject into it then it will be bruised and sore . mum has no qol so covid won’t save her from any moment of quality . It’s cruel demoralising and undignified . I say a quiet prayer each day for her to join her family in a kinder place . her Face is contorted constantly in the same position . I had to ask for sedation last time I visited I was told she will get over it soon which i didn’t find acceptable . Could like you write a book and intend to one day
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
so sorry to read this. You are having an incredibly difficult time seeing your Mum like this. And selflessly you remind others to try to keep smiling!

I hope that you are managing to look after yourself. You are very much in my thoughts and prayers. Take good care x
Thank you so much @GillP that's very kind of you. I treated myself to a full body massage & mini facial this afternoon, it was a blissful 90 minutes and I completely forgot about everything that's going on, which was lovely.
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
Hard to believe your mum was turned down for CHC!

What a battle you are having with funding. The last thing you need is a fight between the city and the county over who is responsible for your mum. It's appalling and I hope you will make your feelings known.
I was told last year by mum's social worker that only one of her patients had received CHC funding during the whole year, so I wasn't surprised when mum was only awarded FNC, I was advised that as mum wasn't violent or disruptive she would be considered as mainly requiring social care, which CHC won't fund. The subsequent Fast Track application was also turned down as they considered mum to be palliative stable at Christmas.

The nursing home ask if there's any sign of money most visits and I have been transferring £1k each month which is her pension to keep things to show willing. It's 2 weeks since I had the initial call back from the county LA so not sure when/if I will hear anything next. Whether they will liaise with the city LA or just dump it back to me I don't know. Hey ho, I await the next exciting episode in this saga! ;-)
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
I can always totally agree with all you say being in such a similar situation . My mum has terminal restlessness she still gets distressed but as she still eats a tiny amount staff are reluctant to sedate her . It’s torture . She is a skeleton what a lot of people don’t realise is that just because people are eating a tiny amount they are cachexiac and nothing absorbs . Mum eats then often chocks needs suctioning . She has skin tears and bruises where skin is so thin. She didn’t have the 3 re booster I Said no but I’m waiting for a call this week about 4th and have given up the fight now if they can find some skin to inject into it then it will be bruised and sore . mum has no qol so covid won’t save her from any moment of quality . It’s cruel demoralising and undignified . I say a quiet prayer each day for her to join her family in a kinder place . her Face is contorted constantly in the same position . I had to ask for sedation last time I visited I was told she will get over it soon which i didn’t find acceptable . Could like you write a book and intend to one day
I'm so sorry to hear that @15moterbike, it must be so distressing for you. At least my mum only shows signs of distress when they move her or try to feed her, the rest of the time she is asleep. I tell her it's time for her to let go when I'm visiting alone but I can't bring myself to say anything like that when I'm with my brother. As my brother says, she's a tough old bird and at this rate will reach her 96th birthday in September!!!
Good luck on the book deal! :)
 

Kat19

New member
Apr 24, 2022
5
0
This is so sad. Re CHC funding. Several years ago I eventually managed to get this for a friend’s mother. Nobody had told her about it let alone help her. She was turned down but I pursued it for her. After several meetings, challenges and rejections the decision was eventually overturned and she got CHC. We had it back dated and had the fees that were paid refunded. My advice to everyone is don’t just accept a rejection if you genuinely feel that you qualify. It is hard work and as it’s such an emotional time for people they can’t really cope with such hassle which is why they give up. If you can get someone to help you and take the pressure off it’s well worth it.
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
This is so sad. Re CHC funding. Several years ago I eventually managed to get this for a friend’s mother. Nobody had told her about it let alone help her. She was turned down but I pursued it for her. After several meetings, challenges and rejections the decision was eventually overturned and she got CHC. We had it back dated and had the fees that were paid refunded. My advice to everyone is don’t just accept a rejection if you genuinely feel that you qualify. It is hard work and as it’s such an emotional time for people they can’t really cope with such hassle which is why they give up. If you can get someone to help you and take the pressure off it’s well worth it.
Thanks for the advice, I must admit I haven't felt emotionally strong enough to appeal, plus I haven't been able to see any of the paperwork either, despite requesting this from the CHC several times. You're right, they system relies on relatives being too distressed by the situation to fight for what they believe their relative is entitled to.
 

Kat19

New member
Apr 24, 2022
5
0
You should be part of the decision making. The whole system is flawed. People aren't made aware of it and/or are too emotionally raw to handle it. I know that there isn't a bottomless pot of money, however, if someone is entitled to it they should get it. I hope you manage to find someone who can help you with all this
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
Thanks for asking @15moterbike, how about you?
Amazingly mum is still hanging in there. She rarely opens her eyes these days since the morphine patch strength was doubled, but does still squeeze your hand. She had her 4th covid vaccine a couple of weeks ago. Her gangrene feet look horrendous but don't appear to have deteriorated in the last month.
I finally received a call back from the CountyLA, they suspect the CityLA will be responsible for mum's care but apparently it comes down to how much savings mum had on the day she was discharged from hospital to the nursing home, so I am waiting to hear back again with their decision.
Meanwhile the house sale is still progressing and we are hoping to get dates for exchange and completion over the next few days, so at least that will be one less thing to worry about ...
 

15moterbike

Registered User
Jan 17, 2022
131
0
Thanks for asking @15moterbike, how about you?
Amazingly mum is still hanging in there. She rarely opens her eyes these days since the morphine patch strength was doubled, but does still squeeze your hand. She had her 4th covid vaccine a couple of weeks ago. Her gangrene feet look horrendous but don't appear to have deteriorated in the last month.
I finally received a call back from the CountyLA, they suspect the CityLA will be responsible for mum's care but apparently it comes down to how much savings mum had on the day she was discharged from hospital to the nursing home, so I am waiting to hear back again with their decision.
Meanwhile the house sale is still progressing and we are hoping to get dates for exchange and completion over the next few days, so at least that will be one less thing to worry about ...
I'm sorry you are having to sell her house to pay for her care. Just visited mum all skin and bones coughing sounds chesty but still accepting some food .the staff really care for her one care assistant said she feels mum has a qol as she is still here and shouts when she has pad changed. I said she hasn't a moment of quality it's torture but I couldn't do there job and have decided today I can't deal with visiting and hearing all this again so yet again I give mum permission to ho and see dad etc and will keep praying for this to end . I can't see how see csn react any different to the nursing staff than me . She has no idea who I am heartbreakimg
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
I'm sorry you are having to sell her house to pay for her care. Just visited mum all skin and bones coughing sounds chesty but still accepting some food .the staff really care for her one care assistant said she feels mum has a qol as she is still here and shouts when she has pad changed. I said she hasn't a moment of quality it's torture but I couldn't do there job and have decided today I can't deal with visiting and hearing all this again so yet again I give mum permission to ho and see dad etc and will keep praying for this to end . I can't see how see csn react any different to the nursing staff than me . She has no idea who I am heartbreakimg
@15moterbike yes it is heartbreaking to see your mum like that, especially when she doesn't know who you are any more. I'm sure deep down she recognises your voice. My brother & I visit together, I tend to hold mum's hand and we chat with each other so hopefully mum knows we are there with her on some level even if she doesn't show it.
Hang in there it sounds like she is coming to the end of her journey like my mum.
 

Sheelagh7

Registered User
Feb 25, 2022
59
0
Mum Update:
We received a call from the nursing home last night to say mum had declined and that we could visit whenever we wanted to (for the last year we've been visiting weekly for an hour or so by prior appointment). This morning we visited mum, her breathing was very laboured and there was no reaction when I tried to hold her hand, so I just stroked her arm as my brother & I chatted. We left the home and arranged to visit tomorrow morning, however, we received a call a couple of hours later that mum had gone and it was peaceful at the end for her. So, it is almost exactly a year since mum was rushed to hospital and they didn't expect her to last the night until her eventual departure. The end, when it finally came, was swift. She was still taking fluids (and soup, etc.,) until 48 hours before.

I'm devastated but also relieved that her suffering is over. Despite knowing it is coming, it is still a shock when it finally happens. Anyway 95½ is a damn good age and despite the last 3½ years with Alzheimer's she was healthy for the previous 92 years and for that we are truly thankful.
Many thanks to everyone for listening to mum's journey and all your advice and feedback.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,147
0
Yorkshire
Sad news @Sheelagh7
Good that you had that last time with your mum and that her passing was peaceful
Your mum certainly made a good age ... but at whatever age it is tough to lose your mum ... my condolences
 

15moterbike

Registered User
Jan 17, 2022
131
0
Your mum is at peace now from this dreadful retched illness . Take care yourself and all your family
 

canary

Registered User
Feb 25, 2014
18,448
0
South coast
I am so sorry to hear your news
She is at peace now
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