Fighting to get her acknowledged as dying.

[mhw]

hi
Mum has had frontal lobe mixed alzheimer's for approx 10 yrs. Cared for at home up until Jan this Yr when she collapsed with bi lateral aspirating pneumonia. Admitted to hospital after cpr basically, and after 26 days and 2 courses of antibiotics kicked out of hospital into an assessment bed. Shes double incontinent has been for 3 yrs, total immobile, totally non verbal, has a choking issue but still eating although slowly and not much, resists liquid intake. The day before discharge she self withdrew a foley catheter with the balloon still fully inflated, which they didn't tell the care home and immediately reinserted a new one as she obviously had damaged herself and couldn't urinate.
In the first 2 weeks in the home she had an external infection from catheter, which then progressed to a UTI , and more antibiotics, which was actually her 4th course in 13 weeks. She then ripped another catheter out, this time they left it out. She has a sacrum pressure sore, has to be full body hoist/ 3 person lifted or moved.
The NHS chc 2 weeks ago found her not eligible even though they acknowledged all the above and the fact she's been assessed as have no cognitive or communication ability independently.
I have asked that she is registered on the GP list as end of life because I want to discuss her medical treatment. As I know ( sorry alot of you wont get this) she would basically say kill me if she could. I need to make sure my and her wishes in that from now on no aggressive medical intervention happens if she gets sick etc and basically as long as she's pain free they stop keep trying to keep her alive...if you can call this a life, which I don't, and I know she would be disgusted about.
I am getting blanked when I ask for her to be registered as end of life, to open up treatment discussions hospice care and many things which can help in this final few months of her journey.
personally I think this is because then they'd have to pay. So they are denying her stage of illness to save their f*kking cheque book, which is sick!
How do I force them to admit that she ticks every box on their end of life palliative care list even on the nhs own website site. Im so annoyed they are downgrading her agony to save themselves cash. I hope they all end up with the same as she has tbh.

 

[DeeCee7]

What a terrible time for both you and your mum @mhw . You and your family have done an amazing ten years care and now you find yourself unable to facilitate the end of life pathway. Are you appealing the CHC decision? I would suggest you call the helpline on this website for guidance. All I can offer you and your mum is my heartfelt sympathy. You are doing all you can, and must be exhausted by the caring and the system you are up against.

 

[yoy]

You don't say whether you have LPA for Health and Welfare for her. I have this for my mum and some time ago the home's senior carer, GP's nurse and I sat down to discuss and come to an agreement over her future medical care (long story but caused by a suspicion of cancer - the treatment for which she would not survive anyway) so that we all knew what to do/expect going forward. I'm not an expert, but I believe that due to data protection laws any organisation will need you to provide evidence like LPA or Court of Protection ruling to prove that you have been given permission to speak for your loved one. Could this be the barrier you are facing?

 

[Eare]

I can identify with almost everything you said, my mum is in a similar state (although has had no UTI's). Eating purees, slowly but unable to feed herself , resisting drinking, fully immobile, fully double incontinent and now cannot pass a stool in any way even with laxatives unless we use enemas, can go a full day without urinating. Non verbal. Basically she is just a body in a bed that we feed one end and use enemas to get it out again. NHS chc do not consider this state to qualify for funding. Basically because she can still swallow and she doesn't have behaviour issues. Of course she doesn't she is just a living corpse. It's shocking really. She is dying slowly but as she has been like this for 3 years it's not quick enough for them to fork out for her.

 

[SAP]

I’m wondering the same as @yoy , I have spoken with the GP at mums care home and we have a plan of action regardless CPR and unnecessary hospital trips and IV antibiotics. If you have LPA for health and welfare then please make that known asap.
I will say that I totally understand what you are saying about your mums wishes and I would be exactly the same.

 

[Sterlingtimes]

I am in this dreadful situation with my mother, and I met with a consultant yesterday. It appears that NHS funding for palliative care requires team approval. Here is an overview:

hip fracture (further surgery impossible) with considerable pain
infection, intravenous antibiotics
immobile
dementia, hallucinations
sleeping nearly all of the time
eating very little, drinking water
palliative morphine

I have agreed that there should be no interventions beyond necessity.

 

[SAP]

@Sterlingtimes , this sounds horrible for you both. Wishing you both peace soon.

 

[mhw]

I am in this dreadful situation with my mother, and I met with a consultant yesterday. It appears that NHS funding for palliative care requires team approval. Here is an overview:

hip fracture (further surgery impossible) with considerable pain
infection, intravenous antibiotics
immobile
dementia, hallucinations
sleeping nearly all of the time
eating very little, drinking water
palliative morphine

I have agreed that there should be no interventions beyond necessity.

Tell them you are entitled to fast track end of life chc assessment, my god they do anything to not pay.

I've told the bunch of idiots I'm dealing with if I don't get replies, satisfactory replies by Monday, I'm going to the care home, with a wheelchair, getting my mum taking her to a&e where they will have no choice to admit her under the vulnerable person mental health act and ill start their stupid merry go round of a process right back to where we all were in Jan . And this time I'll be refusing to allow them to discharge her to another assessment bed, in another home where they leave her laying in her own cold p*ss when we get there.

 

[sue31]

hi
Mum has had frontal lobe mixed alzheimer's for approx 10 yrs. Cared for at home up until Jan this Yr when she collapsed with bi lateral aspirating pneumonia. Admitted to hospital after cpr basically, and after 26 days and 2 courses of antibiotics kicked out of hospital into an assessment bed. Shes double incontinent has been for 3 yrs, total immobile, totally non verbal, has a choking issue but still eating although slowly and not much, resists liquid intake. The day before discharge she self withdrew a foley catheter with the balloon still fully inflated, which they didn't tell the care home and immediately reinserted a new one as she obviously had damaged herself and couldn't urinate.
In the first 2 weeks in the home she had an external infection from catheter, which then progressed to a UTI , and more antibiotics, which was actually her 4th course in 13 weeks. She then ripped another catheter out, this time they left it out. She has a sacrum pressure sore, has to be full body hoist/ 3 person lifted or moved.
The NHS chc 2 weeks ago found her not eligible even though they acknowledged all the above and the fact she's been assessed as have no cognitive or communication ability independently.
I have asked that she is registered on the GP list as end of life because I want to discuss her medical treatment. As I know ( sorry alot of you wont get this) she would basically say kill me if she could. I need to make sure my and her wishes in that from now on no aggressive medical intervention happens if she gets sick etc and basically as long as she's pain free they stop keep trying to keep her alive...if you can call this a life, which I don't, and I know she would be disgusted about.
I am getting blanked when I ask for her to be registered as end of life, to open up treatment discussions hospice care and many things which can help in this final few months of her journey.
personally I think this is because then they'd have to pay. So they are denying her stage of illness to save their f*kking cheque book, which is sick!
How do I force them to admit that she ticks every box on their end of life palliative care list even on the nhs own website site. Im so annoyed they are downgrading her agony to save themselves cash. I hope they all end up with the same as she has tbh.

It’s such a horrible situation to be in, I was there Dec- 22nd Feb but you have to be her voice, and that’s really hard when no one’s listening!
I lost it at the assessment home my mother was in, the GP allocated to that home ended up with a promise of going to the GMC concerning her lack of care. He suddenly became very attentive, went out to see her then spoke with me, on my insistence her referred her to the local hospice. He said she only stood a slim chance of being admitted there.
Surprise….. they sent someone out to see mum the following day & next morning Red Cross came to collect her. Mum had been fast tracked by that lady, she’d also put in a safeguarding complaint in concerning negligent ‘nursing’ care.
Relief doesn’t even come close, mum was finally getting proper care, beautiful surroundings & amazing staff. She did have a DNR but I did not have health LPA. She became calm, even having a few lucid hours some days.

Her last 15 days were spent there, she died very peacefully & I will be forever grateful to that lady.

You can do a self referral to a hospice if you can’t get anywhere with the GP. Google your local ones.

Sadly it’s a postcode lottery with the care sufferers of any medical condition get. Some are very good, others fail miserably. You need to have a thick skin, nerves of steel & not let them shut you down to get anywhere these days.

You know best what your mum would want & needs. I hope you succeed, it’s not easy to stand up & fight for them.

 

[mhw]

As the battle continues, be it still no final decision on chc ( although promised by last friday) or care package finalised, ( still no social worker visit or input) in desperation I email her temp GP that she was assigned to by the NH.
What a lovely woman.
Phoned this morning, thanked me for information, has already booked mum a SALT re evaluation and is going personally to check her tomorrow and has agree to give me her opinion/register her if she sees fit as to putting her on palliative care list EOL pathway protocol
Finally just when yesterday I think I was at the end of my resolve, finally someone is listening, and acting in mums best interests apart from me.
Being an only child, only relative, and living 3 hours away, not being able to move her, it really sucks. I'm so glad I haven't got children, seeing as mum's frontal lobe is possibly genetic ( I refused to be tested until after shes dead because I didn't want to hate her) at least no one will have to do this for me in however long. I wouldnt wish 'me' on my worst enemy.

 

[Sterlingtimes]

Tell them you are entitled to fast track end of life chc assessment, my god they do anything to not pay.

The social workers are experts at avoiding having to pay. If they sniff that the ill person has more than £24,000 in savings, they back off from providing any help. At last, I have progressed with a fast-track proposal for my mother, who is in hospital. Now I am waiting to see when my mother is transferred to a nursing home.

 

[mhw]

Today I am feeling elated, and for all the wrong reasons. The GP finally agreed to go the care home and assess Mum as I had still not been told by anyone what her current level of health , no one answering phones e mails and although family have been in, they are ushered out of the room when she is being washed moved changed etc so no one can see her skin /sores etc and not allowed there at feeding times etc.
but YAY! and what a thing to be celebrating .... the GP has checked her out and although everything i was worrying about seems to be under control and not causing any great waves, they have finally admitted she is in the last 6-12 months of life max and registered her on palliative care list and asked /confirmed my wishes in regard to sending to hospital if future things crop up and what drugs are deemed appropriate as in comfort care not prolonging of life etc.
I am just so relieved someone has helped me.
I was terrified she would end up with aspirated pneumonia again .. again shipped off to a trolley in A&E for days, possibly dying whilst waiting for a bed, and then pumped full of everything and anything only to bring her back from the brink of the end to have to re live the last few months over and over like some twisted version of ground hog day.
I'm obviously not happy that someone has actually said the words 'yes your mother will be dead in the next year' but I am totally elated that if that is going to happen, everyone can acknowledge that and plans put in place, no dramas, no rushed hospital dashes in the middle of the night , as things deteriorate each step can be trod and already planned. calm, expected, peaceful. I dont want to have to be fighting people whilst holding her hand, I dont want the last sounds she hears is my raised and angry voice at yet another clip board person asking for POA or who's going to pay the bill.
No, my mum is dying, and they agreed, now I can get her the dignified end she deserves ... today was a good day.

 

[DeeCee7]

So pleased to hear the relief in your words @mhw . You have fought long and hard for this result. Sleep well tonight!