I just don't know what to say or do??

HartleyHugs

Registered User
Feb 27, 2022
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Alzheimer's the gift that keeps on giving but in such a cruel way. Mum is end of life (again this is the third time) but this time feels different to the last. She has been in bed for just over a week, is still sipping drinks and maybe nibbling the corner of a piece of toast. But the last 2 days have possibly been the hardest so far. I'm not really sure how to explain it but it's the most aware mum has been since falling in 2020. Her vocabulary is still garbled for a lot of words but we have communicated to a degree, but it's just so desperately sad and upsetting, she keeps saying she doesn't like it, and that she doesn't want to go. But today I said I would be back tomorrow and the joy on her face was so obvious and she said are you sure!
I have been holding her hand, hugging her and telling her I love her, then at one point she told me to be careful!
I am so confused and probably not explaining it very well but honestly this is the most aware she has been in such a long time. I have no idea if she knows what is happening or if I am just reading too much into it. I've witnessed and heard of the highs and lows of Alzheimer's but mentally she seems as high as she has been for ages while physically she is as low as she has ever been.
I'm struggling to know how to behave or if somehow I'm making her feel worse because I'm there then have to go.
Has anyone ever experienced anything like this or can give me any thoughts.
Thank you
 

Jale

Registered User
Jul 9, 2018
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Oh @HartleyHugs, I feel for you having to go through this again, wish I could help but we are not quite at eol so have no experience but I'm sure someone will be along.
If it were me I think I would carry on as you are doing, sadly as you know things can and probably will change possibly day to day and you can only deal or cope with things as they are at that time. Don't think I've explained that vey clearly, but I hope you know what I am trying to say, and for what it's worth I don't think you are making your Mum feel worse in fact from what you have written I would say it's the opposite.

Take care and be kind to yourself at this difficult time
 

HartleyHugs

Registered User
Feb 27, 2022
112
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Oh @HartleyHugs, I feel for you having to go through this again, wish I could help but we are not quite at eol so have no experience but I'm sure someone will be along.
If it were me I think I would carry on as you are doing, sadly as you know things can and probably will change possibly day to day and you can only deal or cope with things as they are at that time. Don't think I've explained that vey clearly, but I hope you know what I am trying to say, and for what it's worth I don't think you are making your Mum feel worse in fact from what you have written I would say it's the opposite.

Take care and be kind to yourself at this difficult time
Thanks you @Jale i understood exactly what you meant, I found it very hard to try and explain myself in my message too. I'm just so amazed at how topsy turvy the last few days have been. I came home and my son gave me a huge hug which helped.
 

HartleyHugs

Registered User
Feb 27, 2022
112
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I really should put my phone down, but I just googled Alzheimer's rallying and it bought up a term I have never heard of - terminal lucidity. Which sums up everything that has happened over the last 24 hours. Has anyone ever heard of this before?
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
I've heard of terminal lucidity. I remember reading this article in The Guardian when it came out. My mother, who wasn't ill at the time said 'I love you too', when I said I loved her the second but last time I saw her. She rarely said anything clearly at that time, and never anything to the point. I don't think it was terminal lucidity as such, but I remember thinking that if she died suddenly I'd be glad we'd said that to each other.
Thinking of you and your mum @HartlyHugs.
 

HartleyHugs

Registered User
Feb 27, 2022
112
0
I've heard of terminal lucidity. I remember reading this article in The Guardian when it came out. My mother, who wasn't ill at the time said 'I love you too', when I said I loved her the second but last time I saw her. She rarely said anything clearly at that time, and never anything to the point. I don't think it was terminal lucidity as such, but I remember thinking that if she died suddenly I'd be glad we'd said that to each other.
Thinking of you and your mum @HartlyHugs.
@Sarasa I think I might have just read the same article, and I too felt the same. I'm going to go and see mum tomorrow and hold onto every precious moment and hopefully less tears....,...