End of life care?

[Kelston26]

Dear all

My mother was diagnosed with early onset dementia in 2012 - she is now 77. She was initially sectioned as she was deemed to be at risk living alone.

Over the years, her communication skills have diminished considerably and on most occasions does not recognise her children/family. However, my family takes her out of the 'Assessment Centre', where she lives, at least four times a week, to keep her involved in the family and for extra stimulation.

My mother always had a volatile personality, but I think the illness compounded this volatility and is the main reason she has not moved into residential care from the Assessment Centre.

Anyway, last Sunday she had a 'Stroke', which has resulted in paralysis of her left side and one side of her face. Her communication skills, albeit limited, have not seemed to have worsened, but she is unable to take food or drink because of potential aspiration.

The hospital have also now removed the drip as it was causing a swelling of the arm and because my mother was 'ripping' it out, anyway. Therefore, they have said that because of her condition she will now be 'nil by mouth' and that they just want to make her comfortable.

Mother is clearly agitated and restless and it is painful seeing her so distressed. My sister finds it especially difficult, as she just wants her to get better and is finding it difficult that the hospital seems to want to just make her comfortable before she dies.

For me, not pushing the hospital to try other methods of feeding and not helping her recover is causing me some anxiety. Obviously, I do not want to see my mother suffer, but I'm conflicted that I am letting her die and feel, emotionally, that is wrong.

I also do not want my sister to feel that I do not care or at best indifferent.

Any views?

Regards,

 

[Shedrech]

hello @Kelston26
welcome to TP, though you've found us under such sad circumstances
might you ask to speak to the dementia matron (there's usually someone designated in some such way) and explain all your concerns for how your mum is being cared for - or the lead nurse on the ward
it's fine to ask the staff any questions you have; sometimes they wait until families make it clear how much/what they want to know
if it is your mum's time, then it's not a case of this being caused or worsened by not giving food or liquid; it's that her body is closing down and is unable to deal with food or drink, indeed does not need or want it
if she appears distressed, do mention this as meds can be given to help her settle and be pain free
very best wishes to you all

 

[love.dad.but..]

It is always difficult pethaps to come to the realisation that the time has come for nature to take it's course if there are a number of declining factors. Have you spoken to the Drs to express your feelings on continuing fluids so they can fully explain the difficulties and that presumably they do not feel there are any alternatives? The risk of aspiration is obviously a major concern for them. Being seen to do nothing or offer no intervention is not about not caring or seeming indifferent...sometimes it is about weighing up likely outcomes and following the kindest course of action for the patient. My dad had iv fluids and antibiotics stopped after a chat with his consultant and I knew he would not maintain anywhere near enough fluid intake on his own back in his NH so I also knew the consequence of our decision. He had advanced dementia kidney disease and had life threatening uropsepsis plus had a small stroke. A relative at the NH asked me why I didn't insist on carrying on with fluids ...everyone makes a decision in the best interests of the pwd at the time...her OH is in an almost vegetative state having been peg fed for 3 years...Dad was like your mum...pulled any canulas etc out and very frightened of any even minor intervention...I knew dad would not want to be kept alive in that way. Two phrases I have read a long time ago on TP that resonate with me ....sometimes interventions prolong death and not life and just because we can doesn't sometimes mean we should. I hope you and your sister can find some common ground and have good appraisal of your mum's situation from the Drs. Whatever you do or don't will be a decision made with love for your mum however they should be keeping her painfree and comfortable in all situations

 

[Beate]

This thread deals with palliative care and might be helpful for you to read:
https://forum.alzheimers.org.uk/threads/my-grandad-has-alzheimers.107793/#post-1507339

 

[Kelston26]

Thank you all for such sensitive and appreciated advice.

I wish I knew about this site previously, as reading it have highlighted how much good out there, in a sometimes uncaring world.

Regards

 

[marmarlade]

a year ago I was in the same sitution as you but it was my husband,he had several chest infections and then broke his hip,nothing could be done even if he recovered from the chest infections,so after speaking to the Dr I decided to with draw all medication and he was put on end of life care, he was much calmer with pain relieve and very peaceful ,dont beat your self up about it ,just try to think there is no more pain and muddled thoughts for them its hard and there will be lots of tears but its the right thing to do for them