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End of live care and a couple of anomalies

(28 Posts)
kittylester Sun 31-Jan-16 11:11:54

Mum is now receiving 'end of life care' and the staff in the home are being absolutely brilliant with her and with my brothers and me. They are gentle and caring with Mum and appear to have all the time in the world for our questions.

But - Mum's key carer told me that because her BMI is so low she needs to be weighed weekly. I can see this was a good idea when Mum was 'well' but, now she is in pain when moved it, strikes me as ridiculous. I have banned them from doing it and it has been entered into the care plan.

And, now Mum is at this stage of her life, and drifting in and out of consciousness, it seems silly for her to still be taking the two drugs for Alzheimers and the calcium tablet to help strengthen her bones. confused It seems to me that there is a danger of choking when Mum takes any form of tablet in these circumstances. So, I have to shout at talk to the GP to get him to withdraw them.

Odd, in my opinion.

Deedaa Mon 01-Feb-16 22:35:36

When my mother in law started to deteriorate noticeably her doctor rang and asked if we would like her taken to hospital, where they would feel obliged to try various medications to try and improve her condition, or would we like her to remain in the care home. We opted for the care home. I don't know if they continued with her prescribed medicines or not but they kept her warm and comfortable in her own room until she died peacefully about a week later.

glassortwo Mon 01-Feb-16 20:22:16

Sending kitty and grannya a big {{{hug}}}

Its a year today since my Father passed under what was the Liverpool Pathway, the staff could not have done anymore for him and the family. flowers

Greymary Mon 01-Feb-16 18:34:57

for kitty and granny, just sending you love and strength and positive thoughts.
Blessings to you both and all your family at this time. flowers

M0nica Mon 01-Feb-16 16:16:59

kitty & grannyactivist, look after yourselves and may both your mothers have a peaceful passing.

cornergran Mon 01-Feb-16 08:08:12

flowers for kitty and anyone experiencing the end of life of a loved one, whether family or friend. Please care for yourselves too.

bikergran Mon 01-Feb-16 07:35:53

thinking of you Kitty

Luckylegs9 Mon 01-Feb-16 07:28:03

Liverpool Pathway, still haunts me and always will, it is never far from my mind. I didn't realise it was happening at the time and feel the biggest guilt ever for not doing so. I can and never will talk about it. I feel for everyone going through end of life care for a loved one.

kittylester Mon 01-Feb-16 07:18:18

(((Hugs))), ga.

Luckily my brothers and I are united in our thoughts on mum's care at the moment. That must be very difficult for you as I am finding our situation exhausting. I hate uncertainty and having to ' go with the flow' is awful. I want to get on and plan the next steps and get organised but that seems very disrespectful. A problem with my personality! blush

grannyactivist Mon 01-Feb-16 03:38:33

Kitty I'm in a similar position with my mum, but some family members don't believe that mum needs End of Life Care, they believe that mum is ill and will recover, so they DO want her to have some drugs and DON'T want her to have others. The GP and community nurses are brilliant and are trying to engage with all the family, but it's very hard right now. I'm finding dealing with the family dynamics even more stressful than mum's physical care.

Your experience with your mum is very similar to mine in lots of ways; mine has just been telling me how mean I am for not giving her another cigarette before coming up to bed - even though I've been up with her for the third time tonight and now I'm too tired to sleep.

Alea Mon 01-Feb-16 00:30:16

flowers kittylester, I hope this is giving you all a chance to say your goodbyes, and that for everybody's sake, not least your Mother's, that it will not be too protracted x

Greymary Sun 31-Jan-16 23:40:17

For you and you mum kitty. flowers. Also sending positive thoughts and strength to all dealing with the loss of a loved one.

Jane10 Sun 31-Jan-16 20:51:42

Our family's experience of the Liverpool Care Pathway was very positive. Of course a lot depends on the Dr and staff involved but it was a sensible and kind way of planning and organising end of life care taking into consideration the patient's expressed wishes.

Willow500 Sun 31-Jan-16 20:40:51

Thinking of you in this - it's such a difficult time. I had to sign a form for no resuscitation when my mum was in the final weeks of life in the care home with AZ. She wasn't on any medication - never had been in her entire life (she was 92 when she passed away in 2012) but she did keep having to have a cap for a vaginal prolapse changed. It was so painful when she knew what was happening that I thought it was totally unnecessary to put her through that when she didn't understand so we agreed not to carry on with the appointments. I also had to do it for my dad 2 years earlier for AZ as well. I would think at this stage medication is really not appropriate unless she's in pain.

Alea Sun 31-Jan-16 20:24:42

Given that your brother was unable to have an anaesthetic, watermeadow I am surprised a liver transplant was even considered as it is a very long operation, even longer than a heart transplant. Why was a GA out of the question?
I am sorry for your loss flowers

kittylester Sun 31-Jan-16 20:18:00

The staff are going to ask the gp to withdraw the other medication tomorrow.

Thank you gj.

granjura Sun 31-Jan-16 19:36:42

More flowers from me too. I agree with you it is silly to continue her medication, really. I think staff feel that it may be considered 'uncaring' to withdraw medication- so it is much much better if you and your brothers ask for this to happen. There has been so much criticism of the Liverpool Pathway, etc, doctors and nursing staff are very weary to broach this.

Hope she will just drift away without pain. Considering your mum has not been so loving to you in the past- you have done a truly brilliant job keeping up visits, etc. You won't regret it- and will always know you truly did your very best by her, despite it all. ((((hugs))))

watermeadow Sun 31-Jan-16 19:24:57

When my brother was dying of liver failure, and for many years had been unfit for any anaesthesia, as he had so many things wrong, he was assessed for a liver transplant.
Too many medical decisions are made by ticking boxes rather than common sense.

ninathenana Sun 31-Jan-16 13:35:35

Might be an improvement for one or two I've come across sadly.
The majority are worth their weight in gold before anyone jumps smile

kittylester Sun 31-Jan-16 12:27:30

Obviously, the heading of the thread does NOT mean the end of Live Carers - they are not being replaced by robots - yet!! blush

kittylester Sun 31-Jan-16 12:16:22

The carers were happy to let me stop them weighing Mum so long as they could quote me in the notes but won't stop the medication without the GP's permission. What I don't understand is why he didn't do that when he decided that she was 'end of life'.

Apparently, this morning she thought she might get up.........then changed her mind! Personally, I think she will still be here at Christmas! grin

And, considering that she has never liked me, why does she keep says 'God bless, Kitty' confused

annodomini Sun 31-Jan-16 12:14:40

Thinking of you kitty. You are right to stop the weighing and I hope the Dr will agree with you about withdrawing the medication. I'm glad your mum is receiving such excellent care. flowers

Luckygirl Sun 31-Jan-16 12:03:58

You are right to be making moves to stop her medication and her weighing. The only relevant meds here are those that alleviate pain or other suffering. Talk to the GP. flowers

rubysong Sun 31-Jan-16 11:57:46

flowers for you, kitty and for your mum.

ninathenana Sun 31-Jan-16 11:47:38

Your right kitty it is unnecessary to disturb mum in the circumstances. They stopped all my mum's meds when she was 'end stage' I can empathise with you at this sad time.
Hopefully it's as janeainsworth says once they are given the directive they can simply keep her as comfortable as possible.

glassortwo Sun 31-Jan-16 11:34:57

Thinking of you kitty flowers