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Dad is now going onto End Of Life Care

Woo2

Registered User
Apr 30, 2019
3,257
0
South East
That’s good news that dad is now back in Ch think it’s a better place for him to be and glad you can visit later , hope they clear up soon visiting arrangements .
 

Sarasa

Registered User
Apr 13, 2018
2,318
0
Glad your dad is back in his care home. I hope the manager allows you to visit as often as you want to, and organises it so you and your sister don't have to communicate with each other.
 

jennifer1967

Registered User
Mar 15, 2020
1,869
0
Southampton
at least you have a visit today. hope it doesnt come down to which of your sister and you can visit. that would be very cruel especially as they said that one at a time could visit.
 

Jessbow

Registered User
Mar 1, 2013
3,269
0
West Hertfordshire
I find it extraordinary that he has been discharged Nil by mouth- That really isnt kind.
He's at the end of life,If he wants a sip of tea, granted he may cough and splutter but given that he is at end of life anyway,its hardly going to make any difference.

What are they going to do? just leave him there in the corner?
Talk to the carers again, Talk to the GP, ask that he have whatever he wants within reason,and you'll accept the consequences.

Holding your Hand- and hoping that the next few days are as peaceful as they can be.
 

jennifer1967

Registered User
Mar 15, 2020
1,869
0
Southampton
but if hes aspirating into the lungs, its not going to be particularly pleasant for wildflowerladys dad. maybe lypsyl and moist lips with the sponges. even handcream for hand massages.
 

Jessbow

Registered User
Mar 1, 2013
3,269
0
West Hertfordshire
but if hes aspirating into the lungs, its not going to be particularly pleasant for wildflowerladys dad. maybe lypsyl and moist lips with the sponges. even handcream for hand massages.
Maybe not but.... Not sure what is worse, being denied a sip or two of tea if thats what you really want,or the possibility of aspirating it. ( I mean a tsp full not a mug full )

Depends how aware he is I guess.
My rule of thumb would be ''if he asked/said yes,I'd give it.'' But thats only my theory
 

canary

Registered User
Feb 25, 2014
14,328
0
South coast
I would still talk to the GP. It is not unknown for people with dementia to be judged as being at end of life and then rally. I was told three times that mum had reached End of Life, only for her to rally and start eating and drinking again. My own personal feeling is that you have to be led by the person with dementia. Offer food and drink, but do not force it.
 

Wildflowerlady

Registered User
Sep 30, 2019
394
0
I'm really confused about what's happening @Jessbow my gut instinct was same re fluids etc so spoke with Dr at hospital she said she understands and if dad could be sat up they could offer something if he wanted albeit feeding high risk. I mentioned to the Social Worker when she rang me today I said the care home were going to contact the hospital and social worker said about the care home getting a doctor in to see dad to assess she said she would email the manager. Social worker said the care home had been provided with medications to help with dads condition but didn't say what medication. When I saw dad late afternoon the carer looking after dad said they had been trying to contact dads ward but as of then had not got through. Dad slept the entire visit I was told by carer they usually allow 30 mins but said we'll see. I was allowed to be with dad about a hour and 15 mins before another carer said was sorry but visit was over. I didn't see manager suspect she wasn't there but will call them tomorrow. I said to Social Worker it does seem cruel if looks like dad wants something but whether he would accept when offered I don't know. I also think if dads time and end of life what difference does what he wants make because end result is the same dad will pass away and said that to doctor. I really don't know what death is worse but instinct says let dad decide as much as he can and doctor didn't say if dad would suffer more or less either way. 😒
 

jennifer1967

Registered User
Mar 15, 2020
1,869
0
Southampton
I'm really confused about what's happening @Jessbow my gut instinct was same re fluids etc so spoke with Dr at hospital she said she understands and if dad could be sat up they could offer something if he wanted albeit feeding high risk. I mentioned to the Social Worker when she rang me today I said the care home were going to contact the hospital and social worker said about the care home getting a doctor in to see dad to assess she said she would email the manager. Social worker said the care home had been provided with medications to help with dads condition but didn't say what medication. When I saw dad late afternoon the carer looking after dad said they had been trying to contact dads ward but as of then had not got through. Dad slept the entire visit I was told by carer they usually allow 30 mins but said we'll see. I was allowed to be with dad about a hour and 15 mins before another carer said was sorry but visit was over. I didn't see manager suspect she wasn't there but will call them tomorrow. I said to Social Worker it does seem cruel if looks like dad wants something but whether he would accept when offered I don't know. I also think if dads time and end of life what difference does what he wants make because end result is the same dad will pass away and said that to doctor. I really don't know what death is worse but instinct says let dad decide as much as he can and doctor didn't say if dad would suffer more or less either way. 😒
sorry wildflowerlady if ive made it harder on you. thats why i said those sponges then he can suck so only be tiny amount but wet his mouth.lack of communication is not helping. havent they got a discharge letter with instructions on it?
 

canary

Registered User
Feb 25, 2014
14,328
0
South coast
The carers and care home manager can only follow what is on the hospital discharge letter. If that is to be changed, it has to be the GP who changes it. Thats why the SW was talking about getting the doctor in to assess your dad. See what the doctor says - he will probably have more experience of End of Life in dementia than the hospital.
 

Wildflowerlady

Registered User
Sep 30, 2019
394
0
No worries @jennifer1967 to ease my mind tonight I have literally just called the CH and they got nurse looking after dad to the phone. Nurse says they share my concern and are getting their GP to see dad tomorrow. Nurse said she is doing a mouth wash so dad will get some water in mouth she said dad is out of it at moment.? They have to go by discharge notes but she says they will definitely get advice tomorrow as need to cover themselves first and dad will be under their doctor now not hospital. Nurse said she completely understands and won't let me down her name was ' Patience' I said we need plenty of that. I think I will sleep a bit easier feeling dad is in good hands.
 

Woo2

Registered User
Apr 30, 2019
3,257
0
South East
I’m glad you got to talk to dad ‘s nurse and feel a bit relieved , def seems the right way to go to consult Gp. Thinking of you . 🤗
 

Hazara8

Registered User
Apr 6, 2015
592
0
Dear @Wildflowerlady,

I'm pleased you're feeling more relieved.

MaNaAk

PS: Try to get some sleep.
End of life is precious and requires the ultimate in comfort. Overall 'environment' being devoid of any " waves " which might have been present earlier on with respect to siblings and so on. Most certainly this requires close observation by nurse/doctor initially in assessing the enabling of this ' comfort'. The Care Home should remove the often overwhelming clinical atmosphere of the busy hospital ward. Compassion and Comfort must prevail at these times. Difficult as they are. There should always be great dignity in the natural closing of any life . The holding of a hand can communicate the 'caring ' essence of a long and difficult journey and engender much more than any words.

With warm wishes
 

Duggies-girl

Registered User
Sep 6, 2017
2,248
0
@Wildflowerlady I would have felt the same way as you about your dad having a drink, Dad stopped drinking at the end but I still asked him if he would like a drink because it seemed wrong not too but I don't have experience of the aspiration problem. As far as I was concerned dad could have anything he wanted.

I am glad that you are still visiting your dad and I hope that you get some rest now and feel a bit better and ready for your next visit. The care home staff sound quite sensible and know your dad well so that is good.
 

Wildflowerlady

Registered User
Sep 30, 2019
394
0
CH confirmed that my sister was visiting dad today so I will call in morning to arrange my visit tomorrow as is one visit per daughter every other day which is absolutely fair. I went to the Post Office today was advised which ones could do redirection of post for dads mail as closest one to me not able to do it. I had to drive out to a small village as a Main Post Office and I didn't want to go into large town. Sister had said I am to have dads post sent to me as she does not want to receive dads post she said to have redirection for 12 months. I thought 12 months was far too long so was going to do for three months as dad doesn't get much post and all utility companies will be notified anyway. The lady at the Post Office hit wrong button ( she explained that was what she must have done on phone) and after looking at my receipt when home I realised it had been done for 6 months. I have decided to leave it at that and it should definitely more than cover any post sent to dad. I called the Post Office and she said would make sure she changed the redirection time on the form as I had crossed for 3 months but now paid for 6 months. I had to take dads POA with me so reason why I needed to go to Post Office rather than postal application as there is only the original and no other valid copies. Fortunately I do have the original document as I had printed and filled out the POA for dad and it was posted back to me.
The CH said today that they will offer dad something if he asks but if he coughs and splutters would have to stop he hasn't asked for anything yet today. The CH said they will give dad mouth care. I went to dads home on my way to the Post Office and switched off his small freezer after transferring what was left of his WF meals and some frozen sausage rolls into his fridge freezer and will pop back later to dry and wipe out. Sister is not forthcoming about notifying Council that house needs to be handed over or what is going to happen regarding house clearance, a lot of stuff has been sorted but still need to think about large items such as furniture and white goods. I'm sure I could arrange to get the bigger bits removed but reluctant to do anything for fear of backlash if arrangement doesn't suit her. I am looking forward to seeing dad tomorrow and hoping he will know I am there.