And so my wife Rita lies prone in hospital connected up to a naso-gastric tube for feeding and two intra-venous lines for medication. She is without speech which for her must be a tremendous frustration. Communication is by questions which require only a yes/no answer. Rita will squeeze your hand once for yes and twice for no.
Rita is receiving end of life care. Her throat is bubbly because of her COPD, her breathing quite shallow.
My concern is what is she feeling? What might I say to her to discover that. What comfort might I give her beyond repeating my love for her and acknowledging my guilt and regret for all those occasions I have been impatient with her?
I have talked to her about the holidays we have enjoyed together and other happy family occasions.
Still, I want to know what she is feeling so that I can respond with whatever comfort I can.
Or is this level of intimacy best left alone, lest I release a torrent from her that I cannot handle? Is it better to trust the innate strength and resilience of the human spirit to cope, even alone apart from her families physical presence, with the inevitable suffering of an approaching death?
I doubt there is a neat answer to this question. Perhaps it leaves us to explore an open and wild country until we find some basis for peace of mind.
Chris.
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My heart goes out to you at this time and it brought back memories of my own dad in a similar situation at the end of life.
The lack of communication is so distressing as your wife cannot tell you how she is feeling or what she is thinking. Dad could manage a thumbs up or down which we used in the same way as your hand squeezing to check whether he was in pain, whether he wanted his music on or needed fluids as he had rejected a feeding tube.
It sounds as if you are doing a brilliant job by being there and reminding her of the wonderful times you had together and the love you have for her. Just being able to hold her hand will be a comfort to her.
There aren't any easy answers and we asked the same questions about what we should say and how we should behave. I came to the conclusion that the most important thing is that they know they are surrounded by love.
I wish you lots of love and strength in the coming days.
Hi Chris, I am sorry to hear about your wife. I am sure she knows you are there and you love her. This is what she will want to know and hear.
I have previously recommended a book by Kathryn Mannix ( a palliative care consultant) ‘ With the end in mind: dying, death and wisdom in an age of denial’ . It is excellent and it may give you some comfort at this time.
You are in the same situation that I was with Alan, my husband, at the beginning of December just before he died. Despite the Covid restrictions our 2 adult children and myself were allowed in to be with him and he just seemed to be content to have us all around him and although he could not join in the conversations I know it made him happy to have us there. The palliative nurse was a godsend as she asked him questions that only required a nod or shake of the head and she was so honest and calming with him that I shall never forget her and the relief she brought to the situation.
My love and best wishes go out to you and your wife.
My heart aches for you and your dear wife. This brought back memories of sitting with my darling husband slowly slipped away. Like you I told him repeatedly how much I loved him and what joy he had brought to my life. I apologised for the times I was short with him even though I knew he couldn’t help being ill. We prayed and I read the Bible to him, which I know brought him comfort. But most importantly I thanked him for making me the strong person I had become and reassured him his job on earth was complete. Thanks to him I knew I would be able to manage and asked him to stop fighting and it was ok for him to go.
That was 3 years and 19 days ago, hopefully one day I will learn to live without him, but not yet.
so sorry to read this this it is heartbreaking, i lost my dad last year on 22nd march , he had had enough , he had spoken to me a few years before saying that if it got too much he wouldn’t want to carry on he had also lost most of his speech , but not his sense of humour
my mum was a bit confused about the situation, but she was there by his side just talking and saying she loved him , they were married 61 years
you are doing the best you can do , she knows you are there , sending love and hugs
Dear ChrisYou really cannot do anything more than you are doing. My mum was only able to communicate by squeezing a hand and the rattle of her breathing was distressing. However, my brother and sister and I spent 6 days and nights by her bedside before she died and very strangely I remember that time as some of the most calm times of my life. Just as you are doing, we talked to mum, reliving happy holiday memories and we read and all the time, and like you, we had no idea how she was feeling. I would say, concentrate on the happiness you have shared, the love you have shared, and just let her know you are by her side.
So very sorry for what you both are going through, Chris. Hideous. Unfortunately there is no way to really know what she is feeling but believe you can give her so much comfort without that. Ignore your guilt and regrets - we all have had those moments of impatience and you're not superhuman. Instead keep sharing your happiest memories and tell her stories that allow her to slip into better times. Love and humour will always be the most powerful things you can give her.
no right or wrong answer in this case.Hubby and me discussed this issue some time ago and then got lasting powers etc and he even discussed it with his brother, which is saying something as they don't talk normally.
You need to make peace with yourself in however you are going forward. No righ and no wrong answer. <<<hugs>>> to you to Chris
Sorry to hear that Chris. My husband passed away last month. So my thoughts are with you and your family during this hard time. At least they are at peace now. That is what I try to take from this. Be kind to yourself.
Let her know that you are with her all the way. This has brought a lump to my throat. I fear that we are not far behind you in terms of my father who has MSA too. I repeat that he is not alone. I am with him. He still enjoys the smell of his aftershave! Sending best wishes. X
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