Do you think that people with dementia know when they want to die even if they can't verbalize it coherently? My dad is crying out and then mumbling but he can't tell me what he wants. I don't know if it is his dementia or whether he has just had enough finally of all the prodding and poking and keeping him alive in hospital. He is upset, I know that, and I hate to see him suffering. When is the right time to ask for a loved one to be allowed peace?
Karen
How very difficult for you Karen, you know your dad is suffering but what can you do? In hospital they do what they can to keep a patient comfortable and hopefully make them well again but what if that’s not what the patient wants? Sadly with dementia communication can be very difficult and your dad may indeed be trying to tell you something.
Maybe try and speak to a doctor and see what he thinks as to your dear dad’s care. I know that when Petes mum was at the end of her life, she became chattier than she’d been in a long time and seemed quite peaceful in herself. Of course everyone is different.
My heart goes out to you. Xxxxx
Hi Karen,
I sort of know how you are feeling, as I watched my sister deteriorating in a similar way. I half wanted her to just let go, and at the same time I wanted her to stay with us for as long as possible. (My selfishness). But first and foremost I hoped she wasn't suffering and just wanting it all to be over but no longer able to articulate it. So I understand your concerns. It's such an emotionally charged time.
In the end we asked for as little intervention as possible, so that it was done by degrees, and she was kept hydrated and even a little liquid food was offered, and enough medication to keep her comfy, but not enough to completely sedate her. And my sister responded by shutting herself down, little by little. Our best ally was the staff at her nursing home. They saw so much death on an almost daily basis, that they knew when the end approached, and paved the way for her, and for us, to say our final goodbyes with dignity on both sides.
So it's probably best to consult with your dad's carers frequently, and to ask those awkward questions about the stage he's reached, and to trust as much as you can in what they tell you. But also bear in mind that, just because you ask for minimum intervention, your dad still might hang on for a while. I feel there's some inbuilt intuition that makes people let go when they are ready. It's mostly a question of keeping them safe and comfortable until they reach that point.
But I know this is one of the hardest things to go through in life and I send my deepest good wishes to you and hope you find your way through this difficult time.
I have just spoken to the doctor who agrees with me that a feeding tube is not the right way to go with dad. He told me that dad is approaching end of life care and I asked for him to be made comfortable as I don't want him to suffer any more.
Karen
Watching A&E St Georges last night; it was the one recorded on the day prince Harry got married. At the end, Rhys who is a consultant, said: " it takes courage to let your loved one go." (I hoped to find the replay on iPlayer so as to give you the link, but as yet no success. However, I will say, my daughters and I had that courage! He was ill for one week - non PD related - and in that time I could hear myself say, this is it. The signs were coming for about six months, little ones. Not consciously, but looking back, definite in his withdrawal from outside, how our living space got smaller, our movements around the house more limited, his 'sit' more crumpled. We talked in between, his love clear, but he knew I had promised not to hold him here. With our daughters we urged him to go Beyond, after many happy hours keeping him company, singing, giving thanks to him, offering him drinks and chocolate(!). His passing was without pain to any of us. Just you do your thing. Sit with yourself and what you know. Communicate silently with your dad's heart, and listen. We all let go, just let yours be a conscious message to him. He will hear you. Then it will be his turn to fly. Bless you.
Dad passed away this morning. We were called in to the hospital at 8.30, got there at 9.30 as it's 20 miles away and dad died about 20/25 minutes later. He had his eyes open but his breathing was shallow. I held his hand and told him to go to sleep. He gradually closed his eyes and his breathing stopped. It was peaceful although on Monday he was still struggling as he had fluid build up which was affecting his lungs. I was told that he was comfortable yesterday but I couldn't go in so I don't know.
Karen
I hope he was comfortable yesterday.
Sharing with us has helped me reflect, thank you. I see you didn't know things about Monday. You did, however, experience his last moments as a peaceful passing from here to Beyond which is in essence a positive, abiding memory. I believe now that struggle is part of the process - and although it didn't seem relevant until now - myBeloved showed his sadness to leave us to one of our daughters. May he rest in your heart in peace.
Thank you. So much difference between my mum's death and my dad's even though some of their health problems were similar and they were both in hospital with pneumonia. I suppose it is not knowing if dad was struggling to breathe all day on Tuesday as he was on Monday when I was there. They said he was comfortable Tuesday night and it was early on Wednesday morning when his breathing changed and they rang me. I'm hoping this will settle with me as time goes on. There is so much to process.
Karen
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