Think the end is coming - but what to do?

[lesley1958]

Dad 92 with mixed AZ/VD fell abut 6 weeks ago and broke his femur. He has been in hospital ever since. At first he seemed to recover well from the fall but in the last week or so he has become very poorly. He never regained mobility and his dementia has progressed. The hospital think he now has dysphagia and he has a chest infection possibly caused by that. He is so, so tired, wont' eat and will not drink now and just lies with his eyes closed though I think he knows we are there sometimes.

The hospital decided not to treat the infection with antibiotics and to just keep him as comfortable and pain free as possible. We (mum, me, brother) supported that decision since we don't want to lose him but don't want him to suffred or be distressed any longer. Wedneday night they though he might not make it through but he is still here with us. Physcially he is a very strong man. He is not on any drips.

It feels like we are watchinh him starving to death. I don't know whether I should ask for him to be givem fluids intravenously at least just to make him more comfortable? I fimd it so hard to bear as the days goes by and he just lies there withering away. The hospital (local district one) have been marvellous and cared for him superbly, I have absolutely no complaints there - but should I ask them now to intervene? I want this to be over for his sake but not by default if there is anything we can do to ease this for him.

Any advice or comments would be so much appreciated. Thank you.

 

[Izzy]

In July I was in exactly the same situation with my husband. He had aspiration pneumonia and did not respond to any of the interventions given by the hospital. I had a meeting with the consultant and agreed that he should be kept comfortable until the end. It was the hardest decision I have ever had to take. He seemed to be aware that we were there and he responded by squeezing my hand. That may have been just a reflex but I took it that he knew I was with him. He had one day in which he seemed more alert and that did make me question my decision. I slept in a fold up bed beside his for the week he was in hospital and I was with him when he died. Hard as it was I don't regret my decision.

I wish you and your family strength and I wish your dad the peace he deserves.

 

[Rageddy Anne]

Can't advise, sadly, but couldn't just read and run. So very sorry, it's such a difficult time, and sending you a hug.
I'm sure others will have experience and will be able to offer their thoughts.

 

[lesley1958]

Thanks so much Izzy and Anne. My poor mum has just said to me "if they had given him medication for the infection would he have got better?" They have been married 63 years. Trying to be strong for her. I said I didn't think he would have got better. Can't voice my own doubts and fears. Izzy, hearing about your experience is so helpful. Thanks.

 

[LadyA]

Hi Lesley. Sorry you and your family are going through this.

My husband was hospitalised in 2015 with a severe chest infection, and developed pneumonia. His swallow reflex was gone (dysphagia), and although he had IV antibiotics for a week, it was decided to discontinue them. He still had the infection. He was taken back to the nursing home, and I opted not to have IV or subcutaneous fluids given. He was kept comfortable and well taken care of by the staff, and died peacefully. It's such a difficult decision to make. The staff at my husband's nursing home managed to get him eating little bits of pureed food & taking thickened liquids from a spoon, and he lived another ten weeks and died in his own bed surrounded by familiar carers.

I know I've said it before on the forum, but it does bear repeating. There comes a time when looking at medical interventions, when we have to ask ourselves - are we prolonging his life or prolong his death? And if we intervene, are we doing it for them, or for us, because we don't want to let them go? At that stage, I think it really does take a lot of love to take the hit ourselves, and make the decision not to prolong things unnecessarily for them. Thinking of you and your mum.

ps. One of the things that was explained to me about the aspiration pneumonia was that although food could be pureed and liquid could be thickened, they could do nothing about his saliva. He would likely be inhaling some particles of that, and that would be getting in his lungs, and so the aspiration pneumonia could not really be dealt with at that stage by anti biotics.

 

[love.dad.but..]

I am sorry that you find yourself in this unenviable position, I was in exactly the same position as you with my 86yr old dad recently. Made the hard decision with his consultant after 5 days in hospital on iv fluids and ab knowing full well that his dementia didn't give him the understanding that he needed to drink a lot, took him back to nursing home where he continued to eat nothing and take only sips of water until his swallow reflex went. In Making the decision I knew it would bring him to end of life but a revolving door of hospital iv fluids wasn't the right thing to do. He was kept comfortable had pain relief and a drug to minimise lung mucous build up. He slipped peacefully into a coma 2 days later and died 6 days after that. I regret dementia making me make that decision but don't regret making the kindest decision I could ever make for Dad. Lady A sums up totally just because we can intervene or continue treating doesn't mean in some cases we should. Plus someone else has posted not eating orthe drinking is not the body trying to live, it is the natural process of a body trying to die. This was very much what I felt for dad. Good luck and best wishes to you, many of us have faced a similar situation.

 

[MollyD]

Oh, holding you in support, lesley.

My mum died on April 3rd. We were making these decisions and having these doubts in tandem all along the way. Honestly, I couldn't be right for being wrong no matter what 'choices' were presented or what decisions needed making.

It's a rough painful road. I do believe that is what love entails, however. It seems to be a price we pay. That does not make it easier at the time though.

I'm still tormented by 'what ifs' and 'whys'.

That said, when I look at it objectively, I was plagued with these all along the way (pre end of life care) once in the position of having to make decision on mum's behalf.

Keep speaking to the nurses. Keep asking questions as and when you need. Keep talking about your feelings to pple you trust. Being informed and 'aired' not only gives you the opportunity to make the very best choices for your mum, it does help put a salve on the doubts in the moment. It reassures. Of its nature, none of this is easy. It can feel like a Sophie's choice all along the way. However that doesn't mean you are making poor choices. Really it doesn't. For the most part it is indicative of your love and concern.

Huge hugs xxx

 

[LadyA]

Plus someone else has posted not eating orthe drinking is not the body trying to live, it is the natural process of a body trying to die. This was very much what I felt for dad. Good luck and best wishes to you, many of us have faced a similar situation.

Yes. It's part of the body preparing for death, and starting to shut down. So the person doesn't die because they aren't eating and drinking - they aren't eating and drinking because they are dying. Yet our instinct is telling us that if only we could get some food or fluid into them, they would surely get stronger. But their body could no longer process it, if we did get anything in to them.

 

[love.dad.but..]

Yes. It's part of the body preparing for death, and starting to shut down. So the person doesn't die because they aren't eating and drinking - they aren't eating and drinking because they are dying. Yet our instinct is telling us that if only we could get some food or fluid into them, they would surely get stronger. But their body could no longer process it, if we did get anything in to them.

Put so well Lady A and very helpful for me when dads time came

 

[canary]

Your post mirrors my experience Lesley. Two months ago mum fell and brole her femur, she had surgery, seemed to make a good recovery, but then her dementia progressed, she lost her swallow and refused to eat or drink anything. She too was a tough old bird - she lasted 17 days without food or water and after I was told that she had only a few hours to live she lasted another 48 hours. We had a constant little stream of carers coming in to say goodbye to her as they finished their shift, only for them to come back again the following day and find she was still with us.

I too had to make the hard decision not to go for any treatment, but for her to pass away naturally and (with the help of pain killers, something to relax the muscles and something else to reduce the saliva) peacefully. I think our society has forgotten what death is like and expects it to happen in a manner of minutes. Well, sometimes it does if its a heart attack or something, but usually the body shuts down slowly. Not eating and drinking is part of this process - the body can no longer process the food. The carers tried to get mum to eat a little, but it just made her sick, so they stopped. I agree with Lady A that there comes a time when you are not prolonging life, you are just prolonging death.

The last long vigil is very hard. The best things to do is to play her favoutite music for her and talk to her as hearing is the last thing to go. I also moistened mums mouth with a little brush I was given dipped in water. I cleaned her face with wet wipes and gently rubbed scented moisturiser into her dry skin.
xx

 

[Murper1]

I have just been through this, and I'm still living with it in my mind. If your loved one has the chance to slip gently away like my Mum eventually did, without choking and without distress or pain, then maybe that is best. It helped me that I had read that when someone who is dying stops eating and drinking, far from 'starving', this induces a sense of euphoria for them. Love to you and everyone going through this with their loved one.