A lifelong friend and me, Part 2

Palerider

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Anyone who is interested A lifelong friend and me can be found here:

A lifelong friend and me | Dementia Support Forum (alzheimers.org.uk)


I had to stop writing my old thread because it came at a time when everything felt broken, including myself. I think I was by the end of it grieving the loss of my wonderful mum to the cruel grip of dementia and huge change that came sweeping everything away from what was previously safe and assumed to be unbreakable -my relationship with my mum, the loss of the family home and the bitter dispute with my brother and his wife that had by that stage already left us estranged. I felt completely devastated, alone and facing a whole load of new stuff including selling our family home, moving to a new place and being unable to unbox what was left of my parent’s belongings, all sentimental of course. Then the pandemic hit which saw me witness the unnecessary demise of my own mother, who when she became unwell and I was allowed in to visit her held my hand and said ‘I’ve missed you Simon’ -that was the last time my mother ever truly recognised me. The pandemic and the idiotic public health advisors and government officials destroyed a fair portion of people’s lives living with dementia and I will never forgive those responsible for such an inadequate response that saw our loved ones decline and even die. I fought the local authority and got mum care at home and then fought again to get emergency placement for my mum when things became unmanageable and then I dealt with the NHS CHC amongst other matters in between including the passing of my sister who I also loved very much and now I am here, on the other side of there -if that makes any sense at all.

At 8 years I am still walking this path and I am still trying to fathom why I feel such a close bond with my mum and why despite how hard I try, I just can’t let go.
 

Grannie G

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Hello @Palerider

There is no need to let go of your mum. She is still with you.

What would help would be to let go of the anger because I know you don`t need me to tell you the only person you are hurting is yourself.

The period of covid was horrendous for the world and yes we are all suffering the after effects.

Those in care homes and those hospitalised suffered the most along with their families who were unable to have contact.

World leaders let us down because they were incompetent. Covid was unprecedented.

We can only hope lessons have been learnt.

I say this with love. Look after yourself and try to get rid of that anger. It is not helping you.
 

Palerider

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Hello @Palerider

There is no need to let go of your mum. She is still with you.

What would help would be to let go of the anger because I know you don`t need me to tell you the only person you are hurting is yourself.

The period of covid was horrendous for the world and yes we are all suffering the after effects.

Those in care homes and those hospitalised suffered the most along with their families who were unable to have contact.

World leaders let us down because they were incompetent. Covid was unprecedented.

We can only hope lessons have been learnt.

I say this with love. Look after yourself and try to get rid of that anger. It is not helping you.
Thanks

I know staying angry benefits no one especially the person who feels it. Most of the time I am fine and feel I have reconciled what happened back then, but I have to be honest and say there are triggers that set me off again and it just surfaces. Covid was not unprecedented, we had prior viral outbreaks that should have signalled to our leaders what may just happen next time round. The decision for complete isolation was not based on any evidence and was literally a stab in the dark approach of which the virus in the end achieved its aim regardless. I think there was a serious lack of balancing political ends with the ends of real people and I hope that is one of the lessons that has been learned. You are of course right @Grannie G I can picture my gran telling me to 'let it go'.

When I say letting go of my mum I didn't mean literally but this constant state of limbo makes for some very sad and emotional days at times. Its a real Catch 22 -I know my mum would not wanted to have continued to where she is at now and I feel for her but I also often don't want her to go although I know it will come. I have battled with this for some time now and I think I am going to have to accept no matter how I think about this I am stuck and so is mum -not sure I have completely relayed what I mean but sometimes its hard to actually describe what this state of being feels like.
 

Grannie G

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You said limbo and that is exactly what it is @Palerider

It`s a place no one wants to be and yet there is no escape.

Once there is escape it`s still a place no one wants to be.

A state of mourning
 

Palerider

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You said limbo and that is exactly what it is @Palerider

It`s a place no one wants to be and yet there is no escape.

Once there is escape it`s still a place no one wants to be.

A state of mourning
Yes I am and it's been like this for sometime now. Just thought I'd look up the meaning of 'limbo' it has spiritual connotations, but I use it in the more literal real world sense "an uncertain situation that you cannot control and in which there is no progress or improvement" (https://dictionary.cambridge.org/dictionary/english/limbo. Accessed 29/10/2023). I do have distractions such as work and meeting up with friends but despite that my mind wanders repeatedly. Sometimes I think I am luckier to have a long good bye but equally it can be soul destroying. I don't think the rollercoaster has ever really slowed down, though it is more tolerable than the beginning.
 

Palerider

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I'm off again this week having realised I was exhausted having finally come down of the adrenaline rush of fighting mums corner with the CHC. Today I have hardly moved which is not good for the spine but I am so tired I don't really care. Anyway I got carried away at the weekend and decided to use up the fruits I bought ot make Christmas pudding so I erm had another moment of nostalgia and made a Christmas cake, something that hasn't happened in many years. I am proud to say no burnt edges! I'm feeding it with cognac and taking a few slices for mum -at least if nothing else she'll be merry on Christmas day;)

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GillP

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Well that’s inspired me. I’m going to make one this week. I love the way the whole house seems to smell so festive as I bake Christmas treats.
 

Melles Belles

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That cake looks so good @Palerider .
I understand your frustration over the the treatment of vulnerable people during covid, so I hope you’ve not been listening to the evidence given at the covid inquiry because that will only serve to make you more annoyed.
It is strange how lessons are never learned (But those in power always say that phrase)
 

Chizz

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In my humble view, it's all about acceptance. What has happened cannot be undone. One needs to come to terms with things/events/etc to be able to achieve some peace.
@Palerider - My parents died in the early and mid 1990's. I've got used to the fact that they are not here. However, in some ways and at some times, they are still with me, and sometimes I might even talk to them, or think "Oh, dad would would have liked this" or "Mum would have loved this book" and miss him and her for not being able to talk to.
Yes, I still use my mother's recipe (hand written and folded into an old recipe book) for Christmas pudding and will be making it again this year, usually towards the end of November (but not always on "stir up Sunday")
 

Palerider

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That cake looks so good @Palerider .
I understand your frustration over the the treatment of vulnerable people during covid, so I hope you’ve not been listening to the evidence given at the covid inquiry because that will only serve to make you more annoyed.
It is strange how lessons are never learned (But those in power always say that phrase)
I've been avoiding the covid inquiry as it makes my blood boil -I will be looking out for the final summary and findings, no doubt it will find what we already thought at the time. Hopefully lessons will be learned but as you say its a phrase that is over used and not undertaken seriously.
 

Palerider

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In my humble view, it's all about acceptance. What has happened cannot be undone. One needs to come to terms with things/events/etc to be able to achieve some peace.
@Palerider - My parents died in the early and mid 1990's. I've got used to the fact that they are not here. However, in some ways and at some times, they are still with me, and sometimes I might even talk to them, or think "Oh, dad would would have liked this" or "Mum would have loved this book" and miss him and her for not being able to talk to.
Yes, I still use my mother's recipe (hand written and folded into an old recipe book) for Christmas pudding and will be making it again this year, usually towards the end of November (but not always on "stir up Sunday")
its a bit late for Christmas pudding making -thought I was pushing it a few weeks ago but I guess everyone has their own preferences hey @Chizz.

Its not the passing of people that affects me long term, my gran knew she was dying and shewed us away and passed in the early hours, yes I was upset and it took time. When my dad passed I just didn't have time to deal with it emotionally I had to get on and organize everything and also the coroners hearing dragged things out and the same with my sister again I didn't have time to stop as my BIL was so lost I had to sort my sisters funeral out and them out. This is different because just as we grieve the loss of some aspect of change they are still living and this process goes on and on. It is a 'long goodbye' and I think until we experience it then we can't truly understand what that phrase means, because it means more than just goodbye it encompasses an entire journey with which dementia slowly and cruelly takes away everything that once made them the person we knew not to mention the physical changes. When someone actually dies there is a solid conclusion, there is nothing more that anyone can do other than grieve and in time heal.
 

Palerider

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Today I visited mum having driven through flooded roads it felt like a true adventure. I had also been in during the week and she was brighter then. Today she got me a bit worried for the first time, she became quite vacant, it lasted for a good minute before she started to respond again. She was very sleepy and I noticed a runny nose and cough as well. Out of curiosity I checked her pulse as I thought her heart might of gone slow, but it wasn't slow enough to cause a vacant episode but she is in AF (an irregularly irregular pulse) -I just wonder if she is throwing off small clots but the decision was made not to anticoagulate her due to her frequent falls, and looking at her face she had a bruise on scratch on her right temporal region of her head and a scratch across her nose -clearly yet another altercation, likely she has lost her balance and caught her head on something. I spoke with the carers and it occurred a few days ago, I could tell as the bruise was not a fresh bruise. They have photographed it but they weren't certain of how she'd got it -it is a large unit and not everything gets noticed. I left feeling a bit edgy about how she was today, I think she has caught a cold. I always hope when things aren't great if mum is going to decide its her time she does not suffer and that I get a chance to say goodbye. There isn't much I can do other than plod on and reassure myself that things will be the same tomorrow. I am to be honest hoping mum does not get to the bed ridden stage. I had a chat with M one of the carers off another unit in mums CH who has got to know my mum. I was saying how keen the carers are to tell me mum is eating ok when the reality is it won't stop a killer disease, my focus is not on whether she eats or not but how she is in herself and that she is not distressed or in pain.
 

Palerider

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Today I went back to visit mum and I am concerned about her, she is not quite right. I am wondering if she has caught a cold virus and is under the weather as she has a very runny nose and has the sniffles and a cracking rattly cough. The carers tell me she would not rest yesterday and she went on into the night shuffling round the unit so there is an element of the usual sleep deprivation as well. I just have that gut feeling but also know it could just be me reacting on past experiences or its the dementia advancing more, which is also likely -difficult to tell, so I will visit again tomorrow.
 

Grannie G

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That’s tough.
There are so many virus infections about now and if visitors are coming and going there is probably every chance your mum has picked something up.
Another worry
 

Palerider

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That’s tough.
There are so many virus infections about now and if visitors are coming and going there is probably every chance your mum has picked something up.
Another worry
Thanks @Grannie G -its always a worry. I decided not to visit today but called the unit instead the staff have no significant concerns at the moment, but yes I think she has the common cold for which of course there is no treatment. It's hard at the moment because adding up the years since diagnosis we are well over 10 years and over two years in 24/7 care so she has passed some of the thresholds for disease mortality and I just wonder how much longer mum can sustain this as she is now. Of course no one can predict these things so I try to stay in the now as much as I can with these occasional glitches.
 

Palerider

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I think mum is at a new turning point having not resolved how she has been now for over a week, and today she showed no change again. I spoke with mums nurse R who I trust and I think we both agreed it really is difficult to say what is going on but most likely her dementia has progressed. You'd think by now I would have got used to this step by step decline, but it does catch us by surprise sometimes and it also reminds us of the ominous presence of something we can't see. There is never a pause, as one problem falls away another one appears. I can't help thinking that mum today looked weary and I couldn't blame her for feeling that way given the path she has taken with this disease, which in itself never lets up. I think I am weary of seeing my mum now at this stage as well and for the first time I have thought to myself please don't let this continue anymore, I know my mum would not want this.
 
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Palerider

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I think I am weary of seeing my mum look so weary @Grannie G plus all the other things and of course the ever continuing demise sometimes quick in pace and sometimes slower, if she could have a moment of clarity and look at her own situation I know she would certainly want out. Of course such things are only ever a thought even a value judgement I guess.

Today there is no change and she was asleep in a chair in the corridor. One of the carers had to prompt and feed her, which I have noticed is becoming more of a constant theme of late as well as the continued sleepiness which also seems ever present. Gone are the days when I would walk in and find mum shuffling the corridors, now every time she is sitting and sleeping with the occasional wander, well shuffle, her right leg evermore reluctant to move in sync as well as her now 45 degree contracture of her spine -it is a mystery to me how even now she finds the strength to still wander round the unit when she finds the gumption to move. What saddens me is when I look at the expression on her face, which is not like before these last few weeks. I wish I could wrap her up in cotton wool and protect from this awful disease, but as usual the fact that I can do nothing hits home. I ponder what I can do to make some difference, but that is harder now than it was before.