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Dad is now going onto End Of Life Care

Wildflowerlady

Registered User
Sep 30, 2019
409
0
Thinking of you @Wildflowerlady and your lovely dad and wishing you strength. I don't want to speak out of line but my aunt and uncle were inseparable, and all the time he was in hospital she was by his side. This was before the pandemic and during his last day she had sat with him for hours, around 7ish my aunt told the nurses she was going home, a few minutes after she was home the phone rang to say my uncle had passed away. My aunt believes he was waiting for her to go and maybe trying to protect her one last time.
Thank you @Pepp3r when I say goodbye to dad I am torn between wanting to see him again the next day and just wanting him to pass and be at peace whenever that may be.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,506
0
Thinking of you @Wildflowerlady. I too would have made the same decision about the vaccine. My sister in law, who is a carer, was off work feeling quite ill for three days after having the vaccination. In her case the feeling poorly is worth the benefits she'll get, it wouldn't be so in your dad's case.
Wishing you strength over the next few days.
 

Woo2

Registered User
Apr 30, 2019
3,377
0
South East
I too think you made the right decision , I wouldn’t have agreed to the vaccination either . You are doing your absolute best for your dad . Take care 🤗
 

Duggies-girl

Registered User
Sep 6, 2017
2,343
0
Thank you @Pepp3r when I say goodbye to dad I am torn between wanting to see him again the next day and just wanting him to pass and be at peace whenever that may be.
That is perfectly normal and I was the same, you just want him to be at peace. I hope tomorrows visit goes well for you. Your love for your dad shines through the words you write about him and I suspect that he knows that and I hope that is some comfort to you.

Thinking of you and your dad.
 

Wildflowerlady

Registered User
Sep 30, 2019
409
0
Hope everything is okay- or as okay as it can be.
thinking of you x
Thank you @Jessbow incredibly dad is still fighting on they can't quite believe it said he is really strong. I said when mum said she had had enough at her end of life he told her life was precious. I stayed with dad for four hours today as thought he was going to pass. I left dad at 3pm as felt I should get home to my partner who relies on me too due to his health. They said would call but as they haven't dad must still be battling on. My sister hasn't been to care home over the weekend but assume she will go tomorrow in afternoon. Nurse and a carer both said today that they felt I had made right decision for dad not to have vaccination as initial side effects not nice but was felt they had to ask if family wanted dad to have.
 

Wildflowerlady

Registered User
Sep 30, 2019
409
0
It seems strange to hear nurse say dad is strong he's so thin and never been a large man. Dad is wasting away before my eyes and now looking very gaunt it's all so distressing. I tell him how much I love him and always will and what a good dad he has been 😢 Dad did not give any response to being moved in bed today his eyes only opened a little bit. I noticed dads earlobes have gone a little purple where he lies on each side.
 

jennifer1967

Registered User
Mar 15, 2020
2,288
0
Southampton
It seems strange to hear nurse say dad is strong he's so thin and never been a large man. Dad is wasting away before my eyes and now looking very gaunt it's all so distressing. I tell him how much I love him and always will and what a good dad he has been 😢 Dad did not give any response to being moved in bed today his eyes only opened a little bit. I noticed dads earlobes have gone a little purple where he lies on each side.
thinking of you wildflowerlady and hope that your dad and you find peace. you love for your dad shines through hugs
 

canary

Registered User
Feb 25, 2014
14,631
0
South coast
(((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))) @Wildflowerlady

This stage is harrowing and the changes are hard to see.
They often go on much longer than you would think possible.
He may seem unresponsive, but he will still be able to hear, so talk to him, tell him it is OK to go, maybe read to him and play his favourite music.
 

Hazara8

Registered User
Apr 6, 2015
608
0
Thank you @Jessbow incredibly dad is still fighting on they can't quite believe it said he is really strong. I said when mum said she had had enough at her end of life he told her life was precious. I stayed with dad for four hours today as thought he was going to pass. I left dad at 3pm as felt I should get home to my partner who relies on me too due to his health. They said would call but as they haven't dad must still be battling on. My sister hasn't been to care home over the weekend but assume she will go tomorrow in afternoon. Nurse and a carer both said today that they felt I had made right decision for dad not to have vaccination as initial side effects not nice but was felt they had to ask if family wanted dad to have.
I remember the Consultant in the hospital being genuinely astonished at the strength my late mother exhibited during the " end of life" period. For the 28 days in which she mostly slept she did not eat nor drink. I simply moistened her mouth via a syringe. I remained at her bedside for the 28 days despite suggestions from siblings that it was not necessary. The fact remains that these moments are precious, because they lay bare the overpowering sense of life itself and remove completely the trivial which so often embraces our daily lives.
When l took hold of my mother's frail hand during the early hours l held the hand which brought me into the world. The hand which nurtured me and comforted me. The hand which was always there throughout childhood and adulthood. The hand which made up a life filled with moments of joy and moments much less so, as in war. And it is the life which has been lived which can never be harmed nor changed in any way whatsoever. Dementia claimed the final years of my mother's life and like the broad community of Carers who contribute on here, those years can be life changing and yet profoundly enhancing by way of the essence of compassion and love combined. So being present at this time is both a privilege and a virtuous thing. The latter you demonstrate rather wonderfully.
 

Wildflowerlady

Registered User
Sep 30, 2019
409
0
I saw my dad again this morning I am becoming more shocked at dads appearance his breathing has speeded up and his face is so drawn he's struggling although Nurse said dad had a comfortable night. I am absolutely heartbroken as this stage of dementia/end of life is so soul destroying to see and hope never to see again once dad has gone. Dad seemed a little panicked perhaps because at times his breathing fast so I placed my hands onto his hands which were under the covers and told him I was with him I stroked his head gently and it calmed him but none of this seems enough anymore to ease the pain I feel at seeing my dad be like this but I do hope it does help him.
I took @canary's advice and played dad a couple of his CD's Frank Sinatra and Matt Monroe. I feel sad and very annoyed with myself that I hadn't done this when I started my visits to CH when he came back from the hospital as dad was a little more aware then. I think Matt Monroe was probably a favorite of mums but my dad listened to it a lot after mums passing and one of the songs was played at her funeral 'Softly as I see you leaving' which makes me cry every time I hear it. I told dad how much I loved him that mum was still waiting for him and for him to take her hand now and they could live their lives all over again. I told dad he was very strong but now was the time for him to let go and find some peace. Dad seems determined to hang onto this life despite his awful appearance and desperate struggle to breathe. I hope my asking dad to go to mum doesn't upset him or make him think we don't love or care for him anymore I know he loved her more than words could ever express.
I think dad did realise the music was on today as sure I saw his eyebrow raise a little when the music started so I hope it has helped him in some way. I was told when sister had arrived so had to say my goodbyes to dad. I asked the nurse on my way out at the desk if she could mention to sister that dad may like to listen to his CD's for a little while so perhaps she could put one on as Matt Monroe had almost finished. The manageress was in the reception she said I was doing really well as she could see I was upset I said dad did look worse today. I mentioned about playing dad some music she said that was nice she kind of gave me a indication sister was at the other end of room so I just thanked her and said goodbye sister and I didn't speak or even really look at each other. I cried my eyes out walking back to car. I received a call about 30 minutes after I got home was CH it was all a bit confusing but apparently a covid test dad had they haven't received results from as apparently his has not come back she said it is being chased up but was calling to advise me to wash clothes on my arrival home. I said I had already showered, washed my hair and clothes were in washing machine as I always do that after my visit. I was told that they would call when dads results back. I believe all the residents were tested end of last week so maybe a few more cases of covid have come to light. The CH have done the Lateral Flow test on me every day I visited dad and all have been negative.
 

Duggies-girl

Registered User
Sep 6, 2017
2,343
0
@Wildflowerlady you have said much the same things to your dad that I said to my dad and I worried about the same things but I still think they are the right things to say. Some people pretend it's not happening because that is just their way and there are no rights or wrongs. My dad used to ask me what was wrong with him and sometimes I told him the truth for his sake because he wanted to know and sometimes I would fob him off and tell him that he was still recovering from his hospital stay which was probably for my sake but at the end I felt that I had to say the important things because I owed him that and not everyone gets the chance to say goodbye.

When my mum died she was in a coma (massive stroke) I sat with dad and we told her all the same things even though she may not have heard us, we still told her that we loved her and everything else that we hoped she would hear.

You have done the very best you can for your dad with love and respect and he would be proud of you.
 

annielou

Registered User
Sep 27, 2019
1,911
0
Yorkshire
Sending you hugs at what is a very hard time @Wildflowerlady 🤗 🤗
I felt odd saying those sort of things to my mum too, in case she thought I didn't want her around any more which was far from the truth, just as it is for you with your dad. I had always said to mum I wanted to go before her as I couldn't imagine life without her in it. So I worried she was hanging on for me, so I thought it needed saying so she knew I would be ok and I did explain that I loved her and would miss her but that it was hard seeing her suffering and if it was too hard for her then I understood if she just let go. I told mum she could go be with her mum and said me and my sister would be ok and look after each other. I told her we all loved her lots that she'd been the best mum ever and we always will love her but we didn't want to see her suffer so we'd be ok if she left us.
I'd told her similar things a few times in mums last few days but that sunday when she died I had got up to have a stretch and then was stroking mums hair and head and I told her again how good she had been, how loved etc and that she could go be with her mum and that time I told her it all together and her breathing changed afterwards and I had a feeling she was letting go and would go that day. I wanted her to know that much as I love her and would like to keep her with me forever I didn't want her to struggle anymore. I told her again later while holding her hand not to be scared I would be with her and her mum was waiting for her and I am sure mum squeezed it before her breathing changed again and soon after she died. I also said the same thing after she died too. The staff in mums CH kept saying it was like mum was hanging on for something, but that day I think she finally felt able to let go.
You are doing what you can for your dad and that is hard on you but you can both be proud that you have done it. Take care and if I could send you some strength as well as hugs I would 🤗🤗
 

Wildflowerlady

Registered User
Sep 30, 2019
409
0
Called the CH this morning to arrange visit to dad and call was passed to Deputy Manager. Dad has had a positive covid test result from the test done on the 14th January. It is thought that dad has probably picked up the virus from his hospital stay but not entirely sure how they have concluded that although I know that when I visited dad at the hospital I was not tested neither was sister. I am told I can continue to visit dad if I wish but advice is to make it a short visit maybe 10-15 minutes only and now have to wear a visor as well as the mask, gloves and apron and to shower wash clothes when getting home. Partner and I discussed and I will still visit dad on basis that I stick to the advice which as far as I can see will put me at less risk than any carer/nurse going into dad who also have to go home to their partner/family as my visit will be brief. I had noticed dad was a bit chesty on one of my visits last week and had mentioned I think the CH actually tested everyone the next day as the tests were due for all staff and residents. The staff are tested twice weekly with lateral flow but I noticed today sign saying they must test every day for next seven days. The CH manager saw me before I went up to dad as she was also available today and she said its possible dad is not infectious now but they won't be testing him again. Manager is also OK regarding me visiting as knows I am not mixing and did not mix over the Christmas period either. I have had negative tests every day that dad has been in the CH so 13 negative lateral flow tests. CH manager said dads heart is strong and that is why he is still here.
I went into dads room he looks much the same as yesterday his eyes a little open but not sure how much dad is aware he moved his arm a little and his feet move a little too. I put on dads Frank Sinatra CD told dad how much I love him but said I was not allowed to stay long and repeated how much I love him and always will. I left the CD playing so that hopefully dad could hear it and it be of some pleasure or comfort to him. I was asked to wash hands and take apron and gloves and visor off before heading to the lift to leave the CH.
On my return home my partner says he received a call and has been offered the vaccination tomorrow but it isn't at his health center but a fairly short drive away. I have a slight dilemma CH are saying I can still go into dad but are indicating I need to self isolate for 10 days as obviously have had exposure to dad but I think my partner should get to the center for his vaccination and feel he is just as safe with me as with anyone else especially given I have had so many tests. My partner is able to get into the center as can use his walking stick and hopefully will be a good day and his balance OK 🤞 so if I stay in car and take him would this be considered a reasonable thing to do as I wouldn't be putting anyone at risk myself as not going in and both partner and I are symptom free? I would appreciate opinions please.
When my dad does pass I am assuming that there is now the high possibility that dad will probably have Covid 19 added onto his certificate which will mean that we will not be able to visit dad in the Chapel Of Rest as not allowed. I don't think sister will be able to visit dad anymore as she must use a bus or taxi to get there and advice is to self isolate. I know from what what said to me today that sister only stayed a short time yesterday and she was given a visor to wear. I had a call to my home after my visit so they must have got the results very soon after I left as sister was already there waiting to go up to see dad following my visit.
 
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jennifer1967

Registered User
Mar 15, 2020
2,288
0
Southampton
if you use a mask and gloves, i would think you would be ok but its a dilemma i wouldnt want. i think that as my son wore a mask was protection for his dad while he was in the house.
 

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