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A lifelong friend and me

Palerider

Registered User
Aug 9, 2015
1,850
North West
Sensible to come home when you knew you needed to. I'm also glad that you managed to talk to a real life person about your mum's situation.
Thinking of you over the next days and weeks.
I'm quite keen on San Peligrino Lemonata too. Quite fancy one now.
Thanks @Sarasa, mum has always had a thing for the Pellegrino lemonade and it seems she still does. Ice lollies are sometimes a good idea when someone isn't eating anymore -freshens the mouth and gives some taste sensation as well, I quite fancied the lemonade ones myself.

Its important to leave if unable to concentrate as mistakes in my line of work can be very costly so thanks for your support. On the work train today so will see if I can go the duration...
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
I’m glad you left when you knew it was the right time to and that mum enjoyed some chicken curry and the drink, they are lovely and refreshing . Nice to get another perspective on things and that they raised the spiritual side which if important to mum is a nice idea . Take care of yourself .
Thanks @Woo2
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
Another work day and I am up too early because I couldn't sleep properly, though it was better sleep than Friday night, so something seems to have improved @Grannie G :).

I may treat myself to a Starbucks on the way to work as I seem to have plenty of time.

I bought a double compilation CD album for the car yesterday 'You Raise Me Up', but forgot I don't have a CD player in the new car 🤪 and my microsoft surface doesn't have a CD port so I can't transfer it to USB -oh well!! In the scheme of things will have to make do with the radio.

Its going to be a long day as I am over at the other hospital site today, which isn't as busy.
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
I just woke from a very insidious nightmare, which frankly was wierd and has made me wake feeling quite uncomfortable. I don't have nightmares in the land of nod -not quite sure what it all means. I confess it spooked me enough to get up and put the light on and now I am here awake again.

Anway now I have coffee I might as well say that mum was tested for cornonavirus due to her decline and it has come back negative. The nurse called me later in the day to tell me this and that mum has rallied, but this isn't a recovery its one of those moments where a person close to the end of life picks up and seems to recover. I am told mum was brighter than she has been and asking why I hadn't been back to see her since my visit last week, which is a completely different mum. I have seen this before and am aware of terminal lucidity (TL) which isn't understood. Mum isn't going to sustain this rally and some cases of TL can go on for up to a few months before a rapid closure. I also feel bad, because this could just be stimulation of mum through seeing her last week and she has managed to process somehow I was there and now wants me to return, which under the circumstances is somewhat difficult. The general advice when this happens is to make the most of it and see it as a gift, so tomorrow (today) I will see If I can visit in the garden if possible.

Its hard making sense of these ups and downs and draining because when the phone rings I expect bad news and its tempting to go back to hanging on to a hope that just isn't there when what seems like good news is given. Of course I wouldn't deny if I was called and told mum had become herself before dementia once more I would kick my heels -but the odds of that are erm a big fat 0
 

Woo2

Registered User
Apr 30, 2019
2,263
South East
I’m sorry about the dream/ nightmare , i haven’t had an unsettling one for a long time now but can remember the feeling well .
I have heard of TL , not witnessed it though . The brain really is a very complex organ and I don’t think we will ever really know the ins and outs of it . Hope you managed to get back to sleep for a while and the rest of the day is ok.
 

Toony Oony

Registered User
Jun 21, 2016
570
Hi @Palerider - what a difference a week or so makes. I am so sorry not to have been able to send my love and support to you and your lovely Mum.

The reason I have not been around is that I have had hideously awful computer problems (think - losing all my files, including a whole lot of my last photos of Mum and a whole load of EoL documentation that I just had not remembered to back up as usual ).
Thankfully following a very large payment and some remote jiggery pokery, they got every thing back for me (Mum must have been looking out for me, as frankly I would have paid or done ANYTHING to get those folders back).
Passwords and everything had disappeared, so a lot of resetting and backing up was needed ...

Reading back your thread for the last week or so, I really feel for you and remember only too well that 'twilight' feeling that Canary talks about. Your days have a strange 'other worldliness' to them. You are anticipating something that is inevitable - you really don't want it to happen - but you know it will bring an end to the suffering of someone that you love unreservedly. Your days are full of 'what ifs?' 'should I's?' and 'if only's' along with the sad 'how long's?' and awful imaginings of what things will be like when it is over. It is a lonely and difficult time. However you have good friends here who will be with you.

I am so happy for both you and your Mum that you could share some time together. Treasure it and hold it close to you - it was a gift.
Take care. My thoughts and prayers are with you both.
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
Hi @Palerider - what a difference a week or so makes. I am so sorry not to have been able to send my love and support to you and your lovely Mum.

The reason I have not been around is that I have had hideously awful computer problems (think - losing all my files, including a whole lot of my last photos of Mum and a whole load of EoL documentation that I just had not remembered to back up as usual ).
Thankfully following a very large payment and some remote jiggery pokery, they got every thing back for me (Mum must have been looking out for me, as frankly I would have paid or done ANYTHING to get those folders back).
Passwords and everything had disappeared, so a lot of resetting and backing up was needed ...

Reading back your thread for the last week or so, I really feel for you and remember only too well that 'twilight' feeling that Canary talks about. Your days have a strange 'other worldliness' to them. You are anticipating something that is inevitable - you really don't want it to happen - but you know it will bring an end to the suffering of someone that you love unreservedly. Your days are full of 'what ifs?' 'should I's?' and 'if only's' along with the sad 'how long's?' and awful imaginings of what things will be like when it is over. It is a lonely and difficult time. However you have good friends here who will be with you.

I am so happy for both you and your Mum that you could share some time together. Treasure it and hold it close to you - it was a gift.
Take care. My thoughts and prayers are with you both.
Yes I have had similar laptop problems as my main laptop crashed weeks ago, but with lockdown I haven't been able to get it repaired -a faulty hard drive and all of my masters work on it as well as like you important stuff for mum.

Thanks @Toony Oony any time with lucidity is indeed a very precious gift at this stage of dementia. Just seeing if I can visit today while mum has rallied a little.
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
I am a little shocked as have been informed today mum as been accepted for full CHC funding -I can't believe it, I didn't think she would get anything.
 

canary

Registered User
Feb 25, 2014
12,871
South coast
I do hope that you manage to get to see your mum in the garden.
In mums final year i was told 3 times that mum had reached end of life, only for her to rally. Its a bit of a roller coaster.
(((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))
 

Pete1

Registered User
Jul 16, 2019
796
Hi @Palerider, it will be great if you can get to see Mum, lovely that she is asking about you in my opinion - it shows she is thinking of you. I understand how emotionally draining the ups and downs are, all you can really do is take each and and week as it comes.

It is also good news regarding the CHC funding - that takes a bit of pressure off.
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
Thanks everyone. I was so tired I fell asleep and haven't got anything achieved for today. I was going to visit the CH tonight but have just spoken with mums nurse and they won't allow me to visit just yet and they are now allowing the professional teams back in so they need to be sure not too many people are circulating at one time for now.

Mum however is content and has been quite chatty although not eating, not even her chocolate now.

I'm still in shock over the CHC funding going through, I really thought she wouldn't get that at all. 😲
 

Daisy1950

Registered User
May 20, 2020
20
It's Interesting to me that you should write this today. I had an episode of "losing" it with my husband today and have been asking myself questions about my temperament and ability to continue. Of course this responsibility we all end up with is not of our making but it still has to be faced and a solution found. I don't believe we should make ourselves ill in the course of caring and yet that is often a possibility. There are big questions to be asked of government involvement which never seem to reach a conclusion either.

You have been through so much as well as doing a socially vital job yet here you are in your hour of need feeling social services are not helping you as you deserve.

I don't have an answer for you or for me but the difficulty of caring alone for someone whose reasoning has gone is not being addressed in a meaningful way. A way of coping for those who have to work and care at the same time is glossed over. My sympathies for all that has happened. Best wishes.
I am at my wits end with our circumstances. I've been in tears on & off all day, while he just tells me to calm down. I really don't know how much longer I can do this, but what's the alternative? Nobody else can help, he won't consider going to his daughter's for a week, not that she's offered or even been in touch since March.
 

Woo2

Registered User
Apr 30, 2019
2,263
South East
Thanks everyone. I was so tired I fell asleep and haven't got anything achieved for today. I was going to visit the CH tonight but have just spoken with mums nurse and they won't allow me to visit just yet and they are now allowing the professional teams back in so they need to be sure not too many people are circulating at one time for now.

Mum however is content and has been quite chatty although not eating, not even her chocolate now.

I'm still in shock over the CHC funding going through, I really thought she wouldn't get that at all. 😲
Well you have achieved something today, you have caught up on much needed sleep and you have checked in on Mum so that seems like a productive day to me :) . Glad mum is chatty and content and that she has been approved for Chc. x
 

marionq

Registered User
Apr 24, 2013
6,115
Scotland
I am at my wits end with our circumstances. I've been in tears on & off all day, while he just tells me to calm down. I really don't know how much longer I can do this, but what's the alternative? Nobody else can help, he won't consider going to his daughter's for a week, not that she's offered or even been in touch since March.
You need to talk to your GP first of all about yourself to see if he/she can help. This might be medically, or for some counselling or might be to refer you to social services for some practical help with your husband.

Your husbands illness won’t go away and as you recognise you won’t necessarily be able to deal with it yourself so you have to start looking outside your relationship for help. It is very hard and takes its toll on the carer as we all understand.
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
I am at my wits end with our circumstances. I've been in tears on & off all day, while he just tells me to calm down. I really don't know how much longer I can do this, but what's the alternative? Nobody else can help, he won't consider going to his daughter's for a week, not that she's offered or even been in touch since March.
There is help out there @Daisy1950, but you have to ask for it, no one will come to you and ask how you are or how you are coping. There is always the question 'who cares for the carers?' -the answer 9 times of 10 we the carers do. @marionq is right you need to speak to your GP and your SS and also ask for a carers assessment something which I didn't do until recently.

There is no doubt this is a lonely path to walk and it also tests people's courage and also their motives for remaining and helping or walking away. I empathise whole heartedly on the daughter not maintaining contact, but actions speak louder than words and so we too have to act. We can't care for someone if we can't sustain ourselves in the process.
 

Bikerbeth

Registered User
Feb 11, 2019
1,412
Bedford
Sorry to hear that you were unable to visit your Mum today but pleased that you got the CHC funding. A difficult time for you and not helped by the poor sleep patterns and a nightmare on top. I hope tonight is better
 

Palerider

Registered User
Aug 9, 2015
1,850
North West
Thanks @Bikerbeth

I was just thinking how I haven't been joining in of late with other threads but I can't at the mo, I'm one of those typical blokes who can't multitask when stressed.

Up early again. But its fine I have work today and tomorrow so hoping it all tires me out enough to sleep. No nightmare last night, but I do feel odd at the moment -can't put my finger on it.

Atleast its going to be a cooler day, as much as I love fine weather the heat gets to me and at the moment it magnifies my sleeping issues :rolleyes:

I'm planning some leave from work and how I am going to sort this house out, as it still has to be sold to get rid of the equity release and ensure mums estate (whats left) is intact as she would want and her final affairs in order. I need a team of people to help out -I may do some recruiting at work ;)
 
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Bikerbeth

Registered User
Feb 11, 2019
1,412
Bedford
I think you have more than enough on your plate, so not surprised you are unable to join in other threads. I don’t think it is a bloke thing - just a stress thing. I know when stressed I just have to fix on one task at a time and forget about the rest or it all becomes too much.
I hope you can find some support from your friends to help out with sorting out the house. It really does help to have an ‘independent’ person to keep you on track with what needs to be done.
have a good day at work and hopefully it will keep the mind occupied
 

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