End of Life

[TheHoff]

Thank you for all the support.
It's great to know that we can support each other. Dementia Awareness is still in the early development stages and somehow needs to grow by spreading the word.
CHC Funding is just one area that we need to change. It's almost laughable that Alzheimers does not meet the criteria for funding. It's a terminal illness. In fact on mums death certificate the cause of death states Advanced Dementia.
Assisted Death needs to be campaigned on and debated publicly and in parliament.
CQC needs to be far more robust and the actual standard of care needs to be properly regulated as there's so much difference from different care homes. This will require additional funding and resources.
Anyway I'm going to try and sleep for an hour as that's not been very irregular over a long period of time.
We stand together.

 

[Karen22]

Thank you for all the support.
It's great to know that we can support each other. Dementia Awareness is still in the early development stages and somehow needs to grow by spreading the word.
CHC Funding is just one area that we need to change. It's almost laughable that Alzheimers does not meet the criteria for funding. It's a terminal illness. In fact on mums death certificate the cause of death states Advanced Dementia.
Assisted Death needs to be campaigned on and debated publicly and in parliament.
CQC needs to be far more robust and the actual standard of care needs to be properly regulated as there's so much difference from different care homes. This will require additional funding and resources.
Anyway I'm going to try and sleep for an hour as that's not been very irregular over a long period of time.
We stand together.

I agree so much with what you want changed. I had a horrendous time with my dad who died in May. It was a complete nightmare and one I've not even begun to come to terms with yet. I wanted him to not suffer but he did due to social workers, diabetic nurse, Homes and the hospital Elderly and Frail ward where he died. Why can't end of life care be actively administered. Dad had Anticipatory Medicine which wasn't used. The consultant I spoke to had no compassion or bedside manner about her. She could have made dad comfortable during his last days and she failed and the hospital failed because it was a Bank Holiday weekend. There were so many errors and I really don't know where to start to unravel them and move on. Oh and CHC Funding was laughable - the person applying for it for my dad during his last days when he wouldn't be alive to see it! I'm with you - things desperately need to change.
Karen

 

[Loisand]

Thank you for the responses. Mum passed away on Thursday afternoon. She has been released from the nightmare of Alzheimers. I was with her as she took her last breath. A real privilege to be able to comfort her in her last moments. She is now reunited with my dad.
I can now start a grieving process not just for mum but for dad too. He passed 3 years ago but I have spent that time occupied looking after mum and looking after her care needs.
So much has happened in that time including 3 moves for her. I never envisaged that the journey would present so much heartache. Battles with a clearly under resourced and under funded NHS for example. Battles with CHC Funders. Having to finish work just to keep up with all the interventions and caring for mum. Having to make some of the most difficult decisions in life. For example moving mum in to care. Then having to move again. Just when you think things can't get any worse they do. Hence my original post.
Some positives...mums alzheimers was more advanced than we realised when dad passed so she never really grieved. Wills and POA for both Financial and Health & Welfare were done when Mum and Dad had full capacity. Palliative Care at her Nursing home was outstanding.
We need to campaign stronger to change the law regarding Assisted Death. I suspect that many people in my situation feel the same. If I had a choice now I would willingly make a legal pledge to Assist my own death if I was diagnosed with an incurable disease.

Mums passing is still very raw but already I am feeling a sense of relief not only for me but for mum. It is the most cruel of illnesses that strips you of your dignity. We need to somehow find a cure. Awareness has clearly been raised nationally which is positive. It needs to be sustained and funding increased to enable continuing research into all types of dementia.
My heart goes out to all still living with this nightmare.

I am so sorry for your loss, love and hugs across the airwaves to you, one wonders if there will ever be a cure, I have never known a disease mess someone's life up so much!!! I totally agree something has to be done....but what?? I do believe in assisted death, after all we put our pets out of misery because we love them, but that's a different t debate. Once again I'm so sorry for your loss xx

 

[KEZH]

So sorry @TheHoff to hear your sad news.

An update on my mum. I went to see her on Sunday and she was wandering around the unit in a zombie fashion. Didn't have a clue who I was, very thin and frail. The nurse on duty said to mum "look who has come to see you". Mum looked at me and said "hello" I said "do you know who I am" and she just said "no" and walked on. She then kept walking past me as she circled the unit oblivious to who I was. I found it very hard to deal with and had to leave.

 

[Shedrech]

that's so hard for you @KEZH
you know you have visited and checked on your mum, even though she isn't aware ... so you know she is being cared for
and the mum of old would want you to look after yourself

 

[lis66]

So sorry for your loss Hoff xx