A lifelong friend and me, Part 2

Palerider

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Aug 9, 2015
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Well a teary end to my visit today sat in the car slurping my coffee having parked up to let my thoughts wander for a while. Still the same very much but she looks absolutely exhausted today, sat forward in her chair and dosing off and waking and then dosing. Interaction was brief but mostly there was silence as mum was quite withdrawn. I visited before lunchtime today to see her at a different time in the day -if that made any difference. I'm going to pop along at night as well as that is when she tends to come to life more. I tend not to go at night for the simple reason I am glad to finally rest up, but will change my routine over the next week. I feel so sad for my mum and I also am repeatedly reminded of her absence now more than ever.
 

Grannie G

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Apr 3, 2006
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The problem with visiting is if we see someone at their worst we tend to think that is how they are all the time.

We know from caring at home the bad times are not always constant, there are often windows of light through the day.

Maybe not with your mother @Palerider st this stage but hopefully you might see some recognition if you visit in the evening 🤞🤞
 

Palerider

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Aug 9, 2015
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Well a week has passed since my last entry. Today when I visited mum again was being fed rather than feeding herself. I sat with her and she was clearly refusing food and pushed the plate away and amusingly plopped her spoon in the basket on the table which was there for other purposes in defiance -she still has some spirit left and frankly I don't blame her -if someone was forcing me to eat they'd know about it PDQ! This is where lack of training and experience does lead to carers obsessing on getting someone with advanced dementia to eat when the carer thinks they should -the odds of that are highly unlikely! Food will not change anything in terms of the bigger picture, plus mum already had a shrunken appetite long before where we are now.

Anyway despite the recent changes I left feeling that although there has been a definite decline mum was not unduly distressed or in anyway suffering which was a relief. It is so difficult to resolve how we feel at this stage. I know my mum would not want me to despair, but even though I know that there are times when this whole journey does trouble me out of concern more than anything.
 

Palerider

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Well I think my mums only surviving plant has finally gone to plant heaven. It seems that everything is fading away as time goes by. It only ever flowered once and mum was so chuffed, unfortunately she managed to kill off her better plants by constantly over watering in her earlier stages. Any tips if this can be salvaged would be warmly welcomed .....

20231127_131750.jpg
 

nitram

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Apr 6, 2011
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Any tips if this can be salvaged would be warmly welcomed .....
I'd try repotting it as several plants cutting baby shoots off at their base with a sharp knife.


Others may have different thoughts.
 
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Palerider

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Aug 9, 2015
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I'd try repotting it as several plants cutting baby shoots off at their base with a sharp knife.


Others may have different thoughts.
I'm afraid to say the cactus has now gone to cactus heaven but thanks anyway @nitram. There comes a point when hanging on to anything that is from the past of trying to also cling on comes to rest. I am glad because I don't like cacti and my mum didn't to be honest, however she seemed to always take such delight in this plant even though it was dormant for years on end -long before her dementia kicked in.

Today I visited mum amidst the carnage of Saturday Christmas shoppers in their cars at standstills which in some respects was a nightmare, but of course I also know the back roads, however they were ungritted and to be fair thick with ice in some spots.

Today mum had not even got out of bed and she was exhausted and clearly asleep, her lunch untouched. I woke her but she could not stay awake so after staying for a short while and again handing back things that do not belong to her including spectacles I left having kissed her goodbye and telling her I love her very much.
 

Palerider

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Aug 9, 2015
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No significant changes this week, but small windows of a few months ago appear and then go. Meals are again being missed but this is part of the stage and at least mum is comfortable and when she does wake she is surprisingly the same in herself even though that is now short lived.

I find this time of the year tough because now pretty much everywhere is getting ready for Christmas and it makes me feel empty inside and also teary when I hear certain Christmas music while trying to shop. I feel like my mum is being punished and I don't know why. My loathing for this disease is the same as ever in how it destroys a person and the ripple effect that has.
 
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SeaSwallow

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Oct 28, 2019
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Hello @Palerider This time of year can be so hard for carers, there seems to be a feeling that we should all be happy and bright just because it is Christmas but it's not as easy as that.
This disease is just so awful and only those affected truly understand. Take care of yourself.
 

Palerider

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Aug 9, 2015
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Hello @Palerider This time of year can be so hard for carers, there seems to be a feeling that we should all be happy and bright just because it is Christmas but it's not as easy as that.
This disease is just so awful and only those affected truly understand. Take care of yourself.
Yes its not an easy time of the year especially this time two years ago my sister was dying from a very aggressive cancer. It seems that this time of year will be forever marked with more sorrow than Christmas cheer, certainly for now. I was having a conversation at work about my mums current status and said I was beginning to ponder if she too will follow the same fate given her decline of late. I think if she had the choice she would likely choose New Years day, the same day as her father who she loved dearly of course her mum too, but she was by all accounts a dads girl.

Of course there is not much I can do other than visit mum, keep an eye and watch and wait to see how things pan out.
 

boothaly

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Dec 29, 2019
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Hello @Palerider I have been a 'watcher' on your thread for quite sometime. Our mum's have been on the same journey with very similar timelines. (Social Services, clearing and sale of her house, into care during early Covid etc..) I've really appreciated your diary, it's helped me think about my feelings for what's happened along the way. My mum has just come to the end of her journey; she passed on 17th November, the funeral was on the 7th December. While arranging the funeral I came across a couple of things which I found odd, but it does make you think. Firstly, mums dad was a prisoner of war and I came across his discharge papers and the date he was coming home to see her for the first time... 17th November 1945! Daddies girl?, yes of course. And second, mum had left me instructions for her funeral, i.e. music to be played etc (created years ago while she could still write) and written at the bottom of the page was - Tijuana Christmas! - her favourite Christmas album. How would she have known the time of year? Just coincidence? Who knows. Wishing you much strength for the rest of your journey. Be kind to yourself. Kind regards, Aly. x
 
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Palerider

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Aug 9, 2015
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Hello @Palerider I have been a 'watcher' on your thread for quite sometime. Our mum's have been on the same journey with very similar timelines. (Social Services, clearing and sale of her house, into care during early Covid etc..) I've really appreciated your diary, it's helped me think about my feelings for what's happened along the way. My mum has just come to the end of her journey; she passed on 17th November, the funeral was on the 7th December. While arranging the funeral I came across a couple of things which I found odd, but it does make you think. Firstly, mums dad was a prisoner of war and I came across his discharge papers and the date he was coming home to see her for the first time... 17th November 1945! Daddies girl?, yes of course. And second, mum had left me instructions for her funeral, i.e. music to be played etc (created years ago while she could still write) and written at the bottom of the page was - Tijuana Christmas! - her favourite Christmas album. How would she have known the time of year? Just coincidence? Who knows. Wishing you much strength for the rest of your journey. Be kind to yourself. Kind regards, Aly. x
I'm sorry to hear of your mum's passing, and I wish you and your mum peace. I just write what's in my head and try to put it in some sensible order when I do, though there have been days when what I have written does not reflect completely what I am trying to unravel -if that makes any sense at all? I am glad I was not alone @boothaly in trying to fathom this experience. My and mums journey unfortunately continues, for how long is anyone's guess.

I do think that in people's minds although they may not share it or if even it is a subconscious thing a fix is made on times and dates that we come back to in our stages through life -I do believe in human will even in the late stages of dementia and a presence of something more than just this earthly existence, just exactly what that is I am not sure, but your mum passed on a poignant date and she has left you with a significant day to remember into the future and the love she had for her parents especially her dad -people can and do surprise us I guess. So yes I agree with you. I hope your onward journey is better now, stay in touch :)
 

Palerider

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Aug 9, 2015
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I am sure there are others who are sat thinking why oh why does this always happen at this time of the year as their Christmas spirit sinks to the bottom of their boots -well me too! Not a good week so far in the last week to Christmas (again 🫣).

Mum is just not right at all and today her nurse told me she is just sleeping and waking sometimes to eat and then sleeping again and not walking (shuffling) as she has been previously. In many ways I am not surprised and in some ways stunned her body at the age of 84 has not given up the ghost before now given her relentless wandering for the last 4 years or so with low nutritional intake and everything else that comes with this territory. I visited today and it was emotionally hard to not have the old churpy response and jumbled sentences. Just silence and scarcely any acknowledgement at all. I left feeling out of sorts with the world and in hope whatever happens mum is peaceful, until the next time I visit which is becoming harder now than ever before.

I also have had more bad news with the repeat of my MRI scan. I am losing the use of my left hand and have other progressive issues all of which are consistent with the MRI findings and a few nasty little issues that won't be fixed any time soon as the waiting list is so long and no I don't have funds for private healthcare just in case anyone thinks of suggesting that. I don't know how much longer I can work for, but I need to get through the next 3.5 years to be able to survive on a single pension -fingers crossed 🤞
 

Palerider

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Aug 9, 2015
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I've had that gut feeling for a while now that things are getting worse. Yesterday I got a call mum had fallen but seemed OK. Today I had just visited was on my way home and had a call to say mum had fallen and this time has hit her head on the floor. So the paramedics are on their way -apparently two hrs or so wait time. I have had a long chat with her nurse on the phone, luckily it's F who is back after maternity leave and some time out. I really don't see what the hospital can offer other than keep her in ED for hours on end, likely fail at getting a CT head because she won't lie still and then discharge her anyway. Even if she did have a bleed she would not be a candidate for any intervention so they would still send her home and likely say if deteriorates then for EOL. So here we are again, just before Christmas another conundrum.

I have to be honest, I had a long chat with F having not seen her for sometime as she just happened to be doing an extra shift on mums unit today. She was shocked at how badly my mum is now disfigured with her spinal contracture and generally the change in my mum, I agreed and said the last several weeks have been very different, we are far away from when mum first went into care and even far away from a few months ago. Anyway preparing myself for visiting the hospital if the paramedics aren't able to make a rational decision to see that my mum is OK and also keep an eye :rolleyes:
 

Sarasa

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Apr 13, 2018
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I'm so sorry to hear your latest update @Palerider. I hope the paramedics decide not to take your mum to hospital, certainly I was glad when my mum took a turn for the worst that they decided she was better off in her care home than in A&E. This stage when you know which way things are heading is just so hard and sad.
I'm also sorry to hear about your own health issues. Thinking of you and your mum.
 

SeaSwallow

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Oct 28, 2019
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Oh dear @Palerider I am so sorry to read this, I also hope that the paramedics decide that your mum would be best staying at the care home.