• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Dad is now going onto End Of Life Care

Wildflowerlady

Registered User
Sep 30, 2019
394
0
I have this morning received the call deep down I thought would come. Doctor rang and said that dad is not improving and is deteriorating despite the treatment he has been having and is felt further intervention will not help. Doctor said dads inflammatory markers still up is suspected dad is aspirating into his lungs. Doctor says that she will be referring dad to the Palliative Team who will call to let us know what will be happening next. Dad is still being kept on the treatment he has been having for now. I called sister to let her know usual response she didn't even sound upset saying she knew this would be the outcome she was pretty cold about it. Sister says dads world was turned upside down from the day he went into the CH had probably thought we had abandoned him and still maintains if she could tolerate dads behaviour why couldn't the carers coming into his home. I said that there were no other options for dad she said they could have got dad 24/7 care in his home but I said no it would have been too expensive for ASC to provide. I said there is no blame attached to anyone for what has happened but sister slammed phone down again she may have just about caught me saying why was she still being like this of all times. I received another call this time from Palliative Team he says that the current situation means there is no place for dad within the hospital for dad to be moved to for end of life care and he had actually been in touch with the CH just prior to calling me regarding them and dad but didn't confirm what was happening. I had actually called the CH prior to his call to update them of dads situation and I was told that if dad is returned to them he would be placed on the nursing care floor. The guy from hospital said he had no concerns over dad going to the CH and in fact said his own mum had been there or was there was difficult to follow as I was trying to make some notes and he said was a good CH. Guy actually said was only 2.5 miles away from the hospital and there would not be concern over the journey for dad as dad was very comfortable and actually sleeping quite a lot. Dad is not really talking anymore just making some sounds so is actually unlikely dad will be able to speak with us again. I was told they will be applying for Fast Track Care now he couldn't say when or where dad will be moved to yet but added in theory dad will be transferred to wherever can take him so personally I will be ok with dad going back to CH. I was absolutely honest as was asked how family felt and I said sister did not really want dad going back to the CH for reasons she has given me as I feel they should know what her feelings are but I suspect will have no influence whatsoever where dad is placed. I decided that I would email sister as following our earlier call just cannot stomach talking with her. Its possible something will be decided in next day or two in the meantime he assured me dad will be looked after well whilst in the current ward. Guy has been in to see dad before calling he says dad is comfortable, he reiterated that they completely understand what a very difficult time this is made worse by the current Covid restrictions. The doctor that had called earlier had indicated for end of life the visiting at hospital was 8am-8pm but obviously she must not have been aware of availability for dad to stay there. Doctor indicated dad may have around 1-3 weeks left but added that the hospital is not ideal for dad to stay as they do have quite a lot of Covid there. I wonder is she is thinking not really ideal for people visiting incase we pick it up?. I desperately want to spend time with dad and see him as much as possible.
I lay in bed last night my head whirling round and round as it does knowing we would be faced with this soon but hoping that outcome would be different. I was telling myself I would bite the bullet with sister and take her in my car wherever dad was so she can get to him same as me but this morning and my call to her only confirms that whilst I can show compassion for the situation and want her and dad to reunite for his last few days/weeks she cannot hold her nasty tongue or change her way not for dads sake or mine. I actually really really hope dad goes back to CH as soon as possible now. I am assured by guy that called that they ( Macmillan support ) will be offering their support to CH in dads care there and everything he needs will be in place to make dad comfortable.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,110
0
High Peak
I do admire you for putting up with your sister!

But your dad is on his last legs now so if it is possible for you and your sister to come together, this would be the time. I think you should just ignore her rants about what she wanted to happen (which as you point out, couldn't happen because SS will not fund 24 hour care at home!) and take the moral highground. Once you know where your dad will be going, I would email your sister again, offering to take her with you in the car if she wants to visit. (Much easier to say things with gritted teeth via email than over the phone!)

And leave it at that. You can only offer...

And I hope you are able to spend some time with your dad.
 

canary

Registered User
Feb 25, 2014
14,328
0
South coast
I am so sorry @Wildflowerlady
Yes, hospitals are not good places for either people with dementia or for people at End of Life. I hope they can keep your dad comfortable and can move him somewhere that will take good care of him.

Im sorry about your sister. I expect that she is afraid and her fear makes her lash out, but that doesnt help you and I doubt that you can help her.
((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
 

jennifer1967

Registered User
Mar 15, 2020
1,869
0
Southampton
oh wildflowerlady, let your sister deal with herself. im sorry about your dad, i know how much you loved him and wanted what was best for him unselfishly. thinking of you
 

Sarasa

Registered User
Apr 13, 2018
2,318
0
Sorry to hear about your dad @Wildflowerlady . I hope he is moved somewhere where you can visit him.
I’m so sorry about your sister. I’d stick to emails and as @Jaded'n'faded said offer to take her to visit your dad.
I think even if your dad had stayed at home, the same thing would have happened so don’t let your sister’s view of things make you think you could do anything differently.
 

Woo2

Registered User
Apr 30, 2019
3,257
0
South East
I am sorry @Wildflowerlady , even if you expected the call it is still extremely sad , he has been well cared for and will continue to be wherever he goes , I hope you get to see him soon . Be kind to yourself 🤗 .
I agree I would hold the olive branch out to sister and put the ball in her court , you will know you have done absolutely everything you possibly can then . Sending big hugs and strength to you . Take care x
 

Palerider

Registered User
Aug 9, 2015
2,286
0
North West
I'm sorry to hear this, its been such a struggle for you. Hoping that whatever happens you find some peace and get to see your dad.
 

Wildflowerlady

Registered User
Sep 30, 2019
394
0
Dad is being transferred back to the CH tomorrow around 4pm hospital have said can visit dad today anytime up until 8pm tonight. I related to sister she text me and said she is about to leave her house now so I will visit later by myself. CH manager and I agreed I will call tomorrow and make arrangements for visits she said it would be preferred if we could visit separately which tbh I would prefer myself anyway.
 

jennifer1967

Registered User
Mar 15, 2020
1,869
0
Southampton
at least you get to see him now. just need to co-ordinate visits. if you have separate visits then your dad has less time on his own but look after yourself as well
 

Woo2

Registered User
Apr 30, 2019
3,257
0
South East
So pleased he is returning to the home and also that you can see him , I think separate visits is a good idea . Take care 🤗
 

Sarasa

Registered User
Apr 13, 2018
2,318
0
So glad your dad is going back to the care home, it seems a very good place and much better for him than hospital.
Hope the visit today goes well, and you and your sister can organise a visiting rota at the home.
 

annielou

Registered User
Sep 27, 2019
1,886
0
Yorkshire
Sorry to read about your dad, glad he is going back to CH and you will be able to visit him today and at CH. separate visits are probably a good idea where your sister is concerned though you'll have to have a little contact to coordinate visits with her so I hope she treats you fairer and holds ger tongue. 🤞 sending you hugs and strength for your visits🤗🤗
 

Duggies-girl

Registered User
Sep 6, 2017
2,248
0
@Wildflowerlady I am glad that your father is going back to the care home where the staff know him. Dad got CHC for his last couple of weeks that paid for a carer twice a day which was a help but left me with a lot to deal with the rest of the time but I managed.

Hope you have a good visit today and tomorrow and probably best that you and your sister visit at different times. My sister in law was away when my dad died which I am ever grateful for.

Make the most of your time with your father because even though you know he is going it is very difficult to prepare yourself.

Thinking of you and your dad.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
256
0
Sad to hear this news, @Wildflowerlady, very difficult time for you. As with many others here, you’ve done your very best for your dad throughout this process and it sounds like the care home is a good one where he will be well looked after at this last stage. Just as well for you and your sister to visit separately, I think. You have stayed strong for your dad and will do till the end, but take time to care for yourself too.
 

Hazara8

Registered User
Apr 6, 2015
592
0
Dad is being transferred back to the CH tomorrow around 4pm hospital have said can visit dad today anytime up until 8pm tonight. I related to sister she text me and said she is about to leave her house now so I will visit later by myself. CH manager and I agreed I will call tomorrow and make arrangements for visits she said it would be preferred if we could visit separately which tbh I would prefer myself anyway.

What is clear to this contributor is the care and attention which you have demonstrated over all this time, despite all the obvious stress and anxiety brought about by the personal issues you have endured. It is very good that your father can be moved to the Care Home because with the best intentions in the world, hospital is never conducive to the quiet uninhibited ambience of a non clinical environment. It is wholly right and good that you are given that private space and time to be with your father and l alike many others who have shared your ongoing accounts, trust that despite the current restrictions, that right is given without reservation.
When special and precious moments arise, as they surely will , they belong to you. But the sharing of your story to date provides more than one might initially realise. A two-way dialogue evolving out of what is so often a painful and exhausting journey which always has one ending and yet is uplifting and free of pretence or fabrication - simply FACT.
Let the following days play out as they do and know that compassion and the heart override all things and that this community will not be going away.
 

Wildflowerlady

Registered User
Sep 30, 2019
394
0
Dad was not transferred to the hospital yesterday at 4pm as apparently the funding not sorted yet. I did manage to see dad on Monday but had to wait until sister contacted me to say she had left the hospital as she went as soon as I gave her the information that we were now able to see dad and the times hospital allowed visits. I got left the last two hours of day which she later stated she 'Gave me' also saying she had in fact 'Gave me' approximately 15 minutes more than she had. Dad has a bit of a beard and moustache but nurse said he wasn't wanting them to touch his face to shave him. Dad was very garbled in his speech but appeared to look as if he thought was having a normal chat but I couldn't understand what he was saying not helped by the fact of wearing mask and not being able to sit close. I went to the hospital again yesterday afternoon assuming dad was being transferred at 4pm and would stay until he was transferred to the CH and thought I could maybe go along to CH for a while in evening and see how settled he was. I thought sister would go to hospital in the morning as knew now she didn't want to go if dark but she didn't go see dad at all. Dad chatted away again and I was able to pick up odd words as with day before I just nodded a bit hoping he thought I could understand what he was saying. Dad even smiled and chuckled a bit a couple of times which was nice. The transport team arrived to take a gentlemen opposite home not sure if was actually his home or CH as became clear he was very confused and started to get angry not believing them it took them around 15 minutes to persuade him to leave. I felt dad was a bit better in that I was able to understand him a little more helped by fact I was indeed offered a chair a bit closer. Dad mumbled for them to get on with it when hearing the difficulties with old chap opposite. The nurse had closed dads curtains so as to give us a little privacy unlike day before. Dad had no drip on as last bag had been given day before. Dad near end of my visit started putting his fingers in his mouth and was really gunky and thick stuff he said was black and brown bits coming out. I informed nurse before leaving and she said would sort it for dad. Amazingly as I stood up and put my coat on dad said I like your coat so I thanked him and we gestured kisses to each other I said I would see him again today. I stayed for three hours as they said dad was not going to the CH until today I didn't get any indication of what time it would be. I decided to come home with plan I will go back to hospital today or if dad transferred call CH and see what visit can be arranged there. I feel perturbed that to me dad seems to have improved from day before he was more wakeful and was talking albeit still difficult to understand but he was much brighter. and makes me question as to why dad is not going to be offered some form of nutrition so will ask to speak with someone on my visit this afternoon. I'm not aware that they got the Salt Team to see dad in the end.
 

jennifer1967

Registered User
Mar 15, 2020
1,869
0
Southampton
it was nice to hear you had visited your dad and enjoyed time together. all treasured moments. hope he goes to the CH soon and you can have more visits. maybe the infection has cleared which has cleared his confusion.