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Posted: Fri Jun 30, 2017 8:51 pm
Hi everybody, I'd be grateful for comments on a problem I am experiencing; mom recently had a COPD exasperation along with a stroke. After partial recovery and quite a few worrying times, the hospital asked us to bring mom home for a end of life care - which is what we and she wanted. Although they gave us a continuous care package, I had to fight and struggle for 2 weeks to get mom oxygen at home. Towards the end of moms hospital stay they took away her fluid drip and said we could not have this at home; I asked the family doctor, who also said no. The palliative care team said no too, so even though they all said mom only had a few days to live, she is still with us, but has only had very small amounts of fluids and it has been 15 days now. Mom is not able to swallow properly but her swallow action has partially returned now, moms dementia wasn't in the end stages before her stroke, which was minor. I don't understand how it is right to withold fluids like this because surely, if you are at the end of life, no amount of fluid will help you - but if you are approaching the end of life with a chance of some comfort and quality of life, lack of fluids will certainly hurry it along. On each occasion in the hospital, when mom had been given a glucose drip, she made instant dramatic improvement, talking, laughing and joking and walking. I just feel like she is being 'killed off' . I don't want anyone reading this to think I am completely blinded by love and care, I know what is coming, I always have, I am a realist. But honestly now, should this be allowed to happen? Should other people and organisqtions be allowed to dictate when? It just doesn't seem right. Mom is still fully aware, still saying she is thirsty and hungry, but now the doctor says things such as 'her dementia appears worse' when I feel that actually she's being driven insane through lack of liquid and it is causing body and mind changes which shouldn't be happening YET. How is her dementia so bad she 'needs' to die? If sh is aware she is thirsty and hungry, if she cries with me and says she doesn't want to die, if she knows most of us still, how can it be so bad as to with old basic needs? Please let me know, I just don't feel she is being treated 'equally' or as a 'disabled' person, or to be honest, even humanely. What can I do? Has anybody else had a similar experience?
Posted: Fri Jun 30, 2017 10:35 pm
I don't know myself, but could you contact your local hospice? They are the experts in end of life care and I believe some have nurses who can even come out to help or advise at home. I've not experienced this myself, but have read of it in here and didn't want you thinking no one was answering.
My thoughts are with you
Posted: Sat Jul 01, 2017 11:09 am
There are nurses who specialise in end-of-life therapy and care based at Hospices in my experience, and many of them are charities or run by Sisters
Posted: Sat Jul 01, 2017 2:31 pm
When Dad was last discharged from hospital , I was told he wouldn't be given any more IV fluids should the need ever arise, but he wasn't really sent home on "end of life" either- some half way place you could say.
My instinct would be to offer fluid by mouth if Mum is able to take it and still desires it. If someone is very near the end, I think they have no natural desire or ability to drink and palliative team offer moistened sponge lollipops to keep mouth comfortable.
If you are brave enough google "end of life" and you will read about common signs as someone winds down.
Posted: Sat Jul 01, 2017 2:38 pm
Martin, what support on a daily basis is mum getting? If she is supposed to be receiving "end of life" care and NHS Continuing Healthcare is in place, which should be good, I'm really puzzled why you sound so alone in your care of mum. Is she receiving care from trained nurses? Are they talking to you, or just dealing with mum's bodily needs? You should be made to feel fully supported right now.
Has anyone given you the option of nursing home care? Or discussed with you whether or not you are happy with caring for mum at this stage of life? Or was it just assumed?
Posted: Sun Aug 13, 2017 2:29 pm
I just wanted to give an update on our situation. Mom started to get another infection and we had previously been told the hospital felt it wrong to administer further treatment, however, during that evening as the infection took hold, mom hit her head in a small fall. I called an ambulance but it took two and a half hours to arrive and during this time of panic and confusion, mom suffered a small heart attack. I lay on the floor with her holding her hand, feeling sure that this would be the undignified painful end I feared. Mom did not get any worse than this and when we got to A&E and encountered a different consultant, the outcomes changed completely. The consultant said he was more than willing to admit mom and treat her heart condition and concusion as separate incidents, and would therefore re-hydrate and administer glucose and antibiotics by drip. This tragic incident ended up being the best thing to happen to us for months! Mom returned home this Monday past, she has made a good recovery, her mobility has returned and exceeded how it has been for about 18 months and her dementia has returned to its pre-stroke standard. Mom is now off oxegen too and her stats are above the COPD amounts they never expected to achieve.
I know it may not last, she has told me she knows she is on borrowed time, but for this short period she is fairly happy and content and as her communication problems (caused by her stroke) have subsided quite a lot, she has been able to tell the doctors and hospital consultant her wishes without me having to make decisions for her. I asked the family doctor and hospital consultant not to discuss this with me, I don't want to know and I want mom to feel total control.
I just feel it has proved that all of my worries were correct. I know it most likely doesn't happen often and we are lucky, but they were all determined she was 'off', 'giving up', and that struggling to keep her going was 'cruel and misplaced love' . One junior doctor had even implied I was unrealistic and selfish.
Mom is still receiving palliative care, we have been contacted by a hospice who will shortly make an appointment to visit us, I am hoping we don't need the service but glad it is offered. I'm still of the mind that it is wrong, morally and medically, to with old fluids and nourishment; forward outcomes are only ever 'guestimates' and whilst the experts are nearly always right, it isn't ALWAYS and lives are lost purely because people are too old and too disabled to do anything about it and families are too overpowered and exhausted to make a challenge. It is a terrible way for society to be, when they look back on this time 50 years from now they will be horrified at how our families have been treated and I hope the people who instigate these 'care pathways' eventually have to answer for their actions.
Thank you everybody who read my post and the people that answered. Yes, I am alone in my care, just now I have palliative care help, the first help I have received. Sadly, my extended family are of little help and my relationship with nearly all of them collapsed under the stress of exhaustive caring quite some time ago.
Posted: Sun Aug 13, 2017 3:51 pm
Well done, I always say family know someone better than people who have just popped into their lives for a few moments, like doctors and nurses.