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palliative care is now the situation

jen54

Registered User
May 20, 2014
240
My mum had an infection last week, they thought the meds affected her and she had a turn, the Carehome had ambulance out twice in the week, but after the of duty Dr said they would take mum to hospital for tests, the paramedic Dr over ruled, the Dr saw mum next day and palliative care now is the situation. The home has standby injections as dr wants to keep lockdown.
We have been allowed in for short visits.
It's a hard situation, as still I am in denial, as mum didn't seem to be that bad.
Now she is in bed on fluids, she looked so out of it yesterday, but I chatted as if she was still able to reply, her eyes did meet mine and she managed weak smiles.. Very difficult to stop thinking she could be better if not on morphine, but I have been told her pain from her hip has become very bad and she had stopped eating before.
They are very good at her home, but still I worry she will be left alone as they are thin on ground and busy.
Doesn't matter I have been preparing myself for months.. Its still so hard.
 
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Toony Oony

Registered User
Jun 21, 2016
579
@jen54 - my thoughts are with you. This is the worst time that you are going through, but one that most of us face when we have loved ones with dementia.
My Mum died at the end of February, in her CH. She had pneumonia and would have been sent to hospital, but my instructions were to keep her pain-free and comfortable in familiar surroundings and the sights and sounds of those she knew. My feeling was that even if she did not have somebody with her, the general noises outside and in, would be familiar and her bed would feel 'right'. Hospital would have been a totally alien environment, with unknown sounds, smells and voices. Mum was 91, had vascular dementia and had been very frail and at end stage for some time, any treatment would not have had life-changing consequences.
It was difficult, and I questioned my decision several times, it was also very sad, but when one highly qualified dementia expert told me 'this is what death from dementia looks like' - I knew that I had done the right thing. The CH staff were amazing - not that they kept a bedside vigil - but would just call a greeting to her when passing, talk to Mum during personal care etc.
It must be especially difficult for you given the current lockdowns, but all I can suggest is to visit when you are able and each time you leave, say and do all the things you would if you knew it was going to be the last time you saw your loved one.

My thoughts and prayers are with you and your loved ones
X
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,311
Yorkshire
hi @jen54
I feel for you ... no matter how prepared we belive we are, it's still a shock
I'm glad you have confidence in the staff
and that you have been able to visit to see your mum's smile
 

jen54

Registered User
May 20, 2014
240
@jen54 - my thoughts are with you. This is the worst time that you are going through, but one that most of us face when we have loved ones with dementia.
My Mum died at the end of February, in her CH. She had pneumonia and would have been sent to hospital, but my instructions were to keep her pain-free and comfortable in familiar surroundings and the sights and sounds of those she knew. My feeling was that even if she did not have somebody with her, the general noises outside and in, would be familiar and her bed would feel 'right'. Hospital would have been a totally alien environment, with unknown sounds, smells and voices. Mum was 91, had vascular dementia and had been very frail and at end stage for some time, any treatment would not have had life-changing consequences.
It was difficult, and I questioned my decision several times, it was also very sad, but when one highly qualified dementia expert told me 'this is what death from dementia looks like' - I knew that I had done the right thing. The CH staff were amazing - not that they kept a bedside vigil - but would just call a greeting to her when passing, talk to Mum during personal care etc.
It must be especially difficult for you given the current lockdowns, but all I can suggest is to visit when you are able and each time you leave, say and do all the things you would if you knew it was going to be the last time you saw your loved one.

My thoughts and prayers are with you and your loved ones
X
Thank you, it's a help reading through others experiences,
I, too, didn't want mum in hospital, she has a dnr in place, as from previous experience I know mum would be distressed in hospital.
She is in the room she has been for two years, and always spoke as if it was her flat, and in the corridor was a street,so hopefully she will remain peaceful, as she is used to it there. So it is a comfort that she isn't being taken somewhere strange.
 

Pete1

Registered User
Jul 16, 2019
885
Hi @jen54, it is such a difficult time, even if you are 'prepared'. I went through exactly same with my Mum and I can say without a shadow of a doubt, in my experience the palliative care in the home is the best thing. I am so pleased to hear that you have some visiting. If the time comes that Mum is no longer visibly responsive, keep talking to her about times gone past, they are very precious moments. I wish you well, stay strong.
 

Duggies-girl

Registered User
Sep 6, 2017
2,102
I agree with @Shedrech I knew dad was dying and I knew it would be soon, a couple of days perhaps or maybe tomorrow but not right now. It was a huge shock when it happened even though I knew it was happening and I thought I was prepared but I wasn't really.

Along with the shock I also had a huge sense of relief that dad was finally at peace.

It must be terribly difficult at the moment though and I will be thinking of you @jen54
 

jen54

Registered User
May 20, 2014
240
Hi, thanks for your posts.
Mum passed peacefully at the Carehome this morning, her carer rang for us to go immediately, but in the fifteen minutes it took me to get there, mum had gone.
It was peaceful and she just sighed and was gone with her favourite carer with her
I am thankful we were both allowed in yesterday together to say our goodbyes and tell mum we loved her etc, though we never showed we thought she was going and kept it upbeat like a normal loving get together.
All the nightmare starts now, as dr wouldn't come out to give a medical cert, hone want sure what happens now, and the funeral people came in full masks, which was a shock. Now I find all registrars are shut.. And I have to fill a form for a phone call back.. Hey. Jo.. Its all a shock, so this practical stuff on top is a bit overwhelming in lockdown
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,057
69
Dundee
I'm so sorry to read your news @jen54. I'm glad though that your mum died peacefully with her favourite carer there.

Wishing you strength for the days and weeks to come.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,311
Yorkshire
oh @jen54 such sad news
your mum was peaceful with her carer by her side, and she smiled at you yesterday ... a memory for you to treasure

sorry to hear that arrangements are difficult to make ... talk with the funeral directors they will have some suggestions to help
 

Pete1

Registered User
Jul 16, 2019
885
My condolences @jen54, I'm pleased to hear you were able to see Mum. The arrangements are challenging enough without all of the added complications of the lockdown. Take care of yourself. All the best.
 

canary

Registered User
Feb 25, 2014
13,688
South coast
I am so sorry to hear of your loss
The present situation is just making everything so much harder.
((((((((((((((((((((((((((((hugs)))))))))))))))))))))))
 

Sarasa

Registered User
Apr 13, 2018
1,861
Sorry to her your news @jen54, but glad you managed to see your mum before she passed away and that she was in the place she thought of as home. Look after you, and just take all the red tape that needs sorting one little bit at a time.
 

LynneMcV

Registered User
May 9, 2012
3,975
south-east London
My condolences on your loss @jen54.

I am glad you managed to have that special time with your mum yesterday - and that when the passing came today it was peaceful and she was with her favourite carer.

The paperwork that follows the death of a loved one is daunting at the best of times and I am so sorry that you will be facing even more difficulties than usual due to all the current restrictions around the coronavirus pandemic.

Thinking of you x
 

Philbo

Registered User
Feb 28, 2017
838
Kent
So sorry to hear of your loss @jen54

I do hope that the undertakers can help you deal with all the unknowns due to this awful COVID-19 situation.

Best wishes to you and the family.

Phil
 

jen54

Registered User
May 20, 2014
240
Thankyou, it feels unreal at the minute. I am hoping to find out what on earth happens about the registering tomorrow via the funeral directors and Carehome
 

Toony Oony

Registered User
Jun 21, 2016
579
@jen54 - my sincere condolences.

That last time with your Mum will be a memory to treasure.

Lean as heavily as you wish on the funeral directors, it is what they are there for and get paid for. I was amazed how much they were willing to do on my behalf. Bear in mind that it makes their job easier (never more so than now) that they hold all the strings and know exactly what is happening.
It isn't a panic and rush to get stuff done, you are grieving. Everyone will realise that and give you the time and help to do what needs to be done - the rest can wait and be done one small step at a time.
Thinking of you.
X
 

jen54

Registered User
May 20, 2014
240
Thankyou,
It feels as if a long time has passed since mum died,.. Just two days.
I was worrying about how to register the death etc. Luckily it has gone smoothly, mum's Dr rang me yesterday and said she was scanning medical cert to registrar, I filled in the online submission form to register and they rang back today. Took details over the phone and are posting the death cert to me and emailing the green form needed for burial to the funeral people, who have emailed me forms to fill in and email back. Then they will phone about details times etc for funeral.
I am concentrating on getting the practical stuff done
 

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