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End of life access

AlzKidz

New member
Jul 21, 2020
2
Hi.

We're currently watching our dear Alzheimer's Mum dying over Skype in her care home.

Status - 'end of life', regular meds stopped, palliative meds standing by, nil by mouth, Cheyne Stokes breathing, not rousing, responding to our voices through the iPad propped up next to her.

We think she should have a family member with her from this point to the end but care home hq not allowing this even though we are Covid clean and there is a direct access into Mum's ensuite bathroom from outside.

Please does anyone else on here have any experience of this. Is there anything we can do?
 

Chaplin

Registered User
May 24, 2015
71
Bristol
I’m so sorry for the situation your family is in. I cannot imagine how awful that is.

please take a look at this, it will at least give you a point of discussion with the care home:https://www.england.nhs.uk/coronavi...sionate-visiting-arrangements-11-may-2020.pdf

unless they have active virus residents at the moment their decision to not allow you to spend time with your mum is heartless.

hope you find some compassion from the care home!
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,605
Merseyside
Welcome to DTP @AlzKidz
How distressing for you all. Have you spoken to the manager?
Please keep posting as you’ll get lots of support here.
 

Duggies-girl

Registered User
Sep 6, 2017
2,056
@AlzKidz I am so sorry and I find it rather shocking that people are still being allowed to die without seeing loved ones for a final time, I would have been devastated if it had happened to dad. I thought visits were being allowed now for end of life patients.

I would speak to them again and I hope you have a better response because it is awful to deprive you of saying goodbye.
 

AlzKidz

New member
Jul 21, 2020
2
Thank you Chaplin, Cat27 and Duggies-girl.

Mum breathed her last the next morning. We lobbied HARD on her behalf to have one of her children at her side throughout the dying process but this seemed to fall on deaf ears - just platitudes - we know it's so hard for you etc.

After really pushing hard, the home instead of granting the above request, said that two family members (different ones) could visit for half an hour a day for seven days . Seven days was pointless given the stage she was at and we just couldn't understand why this risk was okay but not her daughter going in once to stay to the end. Plus there was an access from outside directly into Mum's ensuite bathroom.

Thank God that we were finally called in at the last and were able to comfort and reassure her, sing to her, and hold her.
She died in our arms just half an hour later.

Thanks for trying to help us, you are very kind.
 

Chaplin

Registered User
May 24, 2015
71
Bristol
Thank you Chaplin, Cat27 and Duggies-girl.

Mum breathed her last the next morning. We lobbied HARD on her behalf to have one of her children at her side throughout the dying process but this seemed to fall on deaf ears - just platitudes - we know it's so hard for you etc.

After really pushing hard, the home instead of granting the above request, said that two family members (different ones) could visit for half an hour a day for seven days . Seven days was pointless given the stage she was at and we just couldn't understand why this risk was okay but not her daughter going in once to stay to the end. Plus there was an access from outside directly into Mum's ensuite bathroom.

Thank God that we were finally called in at the last and were able to comfort and reassure her, sing to her, and hold her.
She died in our arms just half an hour later.

Thanks for trying to help us, you are very kind.
I am so sorry for your loss. I hope that in time, you find some comfort knowing your dear mum is free of further torment from this terrible illness. Your comfort at the end should not have been fraught with unnecessary blocking by the care home but so glad you shared your mum’s last moments, albeit very briefly. Take care in the weeks and months ahead.
 

Bikerbeth

Registered User
Feb 11, 2019
1,568
Bedford
So pleased to hear that you were able to go in at the end to comfort your Mum. It is hard enough without the additional problems that COVID brings.
sending you and your family condolences at this time.
 

Just me

Registered User
Nov 17, 2013
346
I’m so sorry for your loss @AlzKidz and the unnecessary stress you had to endure to be allowed to be with your mum.
Thinking of you