My mum was diagnosed with alzheimer's in 2014 at the age of 67 but she had signs probably two years before this. I got a call in mid Feb 2021 from my mums Care Home saying we needed to start thinking about end of life plans, her weight had dropped and her eating has declined. She's doubly incontinent, leg and arms are contracted and is pretty much non verbal. It's now been a roller-coaster of mum eating teaspoons of food and then perking up again. The care home staff are so inconsistent with their updates on her, one telling me today they had a conversation when she barely can make noises. It's so hard to know what to expect I believe she's at the green stage of the golden standard framework. I've been asked if it's okay to ring if she declines in the night back in February. But when I ring now they act like I'm asking too much and she's fine it's so hard to process and the support from the home is so lacking. They seem to keep saying there's been a miscommunication, but her end of life medication is in place for when the time comes. This is so hard for me and my sisters this is more of a cathartic rant as I know many people have posted similar stories. But I just feel care homes don't give accurate information and seem to like to pretend things are okay. They've let me and my sisters have special visits before the care home visits were lifted nationally, so I'm just sleeping with my phone by my side expecting the worse but today she's eaten really well. It's very hard and my heart goes out to everyone impacted by this horrific disease.
Mum in late stages
- Thread starter Hannahelizabeth
- Start date
Hello and welcome @Hannahelizabeth
That's a very tough situation and I wish you and the family strength.
Do keep posting as you will get support here from people who understand what you are going through.
That's a very tough situation and I wish you and the family strength.
Do keep posting as you will get support here from people who understand what you are going through.
Welcome to the forum @Hannahelizabeth.
I’m so sorry to read about your mum’s condition. How incredibly hard for you to deal with this during the current situation. I’m glad you’ve found this forum and I know that you will find lots of understanding and support here. Keep posting!
I’m so sorry to read about your mum’s condition. How incredibly hard for you to deal with this during the current situation. I’m glad you’ve found this forum and I know that you will find lots of understanding and support here. Keep posting!
could you talk to the doctor in charge of your mums medical side and ask them directly. it must be hard to hear almost opposite sides of the spectrum and wonder if her gp can be clearer if that is possible about your mum.
Yeah might be work speaking to her GP again but I did speak to him when they first got in touch in February about end of life seeming near, he said it could just be a blip or she might actually be declining further, he agreed that having end of life medication in place was probably a good idea for when she needs it.
Im afraid that this stage is a terrible roller coaster @Hannahelizabeth
I was told three times that mum was at end of life, only for her to rally. They really are seemingly at deaths door one day, only to perk up and eat the next. It may not be entirely that the staff are giving you wrong information.
Unfortunately, this stage can go on for a few months, or possibly only a few days - your mum is obviously in the final stage, but that does not necessarily mean that she is at End of Life and it may be impossible to give you the answers that you really want
((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
I was told three times that mum was at end of life, only for her to rally. They really are seemingly at deaths door one day, only to perk up and eat the next. It may not be entirely that the staff are giving you wrong information.
Unfortunately, this stage can go on for a few months, or possibly only a few days - your mum is obviously in the final stage, but that does not necessarily mean that she is at End of Life and it may be impossible to give you the answers that you really want
((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
Thank you for sharing your story with me it really does help, I'm sorry you had to go through it. Just preparing yourself for the not knowing when is very hard ?
We are going through exactly the same with our mum. She had been in hospital for 8 weeks from mid Dec. She caught Covid but recovered. Because other patients kept getting Covid , she had to isolate. After 8 weeks she went to nursing home as she became bedridden, incontinent, sleeping all the time and eating very little. We were told she was end of life and could they ring in night. Her meds are ready. The last few days however, she has woken up and now starting to talk and eat a little more. What a roller coaster!
Welcome to TP @KarenT66
I think rollercoaster is a very accurate description. Please keep posting as you’ll get lots of support here.
I'm so sorry you're having to go through this, especially your mum getting covid must of been so scary. I hope the care home are better at communicating than my mums as that's half the battle with the end stages not knowing what's happening ❤️
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