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A lifelong friend and me

Pete1

Registered User
Jul 16, 2019
866
I'm so saddened to hear that @Palerider, it must be shocking to see such a drastic change. I feel for you and your Mum too. Stay strong.
 

Bikerbeth

Registered User
Feb 11, 2019
1,556
Bedford
I am sorry it has been such a hard day for you when you were looking forward to seeing your Mum. It must indeed have been a shock. Sending you hugs
 

Lynmax

Registered User
Nov 1, 2016
554
I think quite a few of us will see changes in our loved ones when we finally visit them.

Mums care home sent us a couple of video clips of mum singing - just three residents and loads of carers! It was rather bitter/sweet though as mum looked a bit uneasy singing and waving Pom poms, she was never a fan of communal singing! But it was nice to see her dressed smartly in her own clothes and looking clean and comfortable. In one of the clips she did engage with one carer and was laughing and looking at her.

I guess it was better than nothing but I've not been able to visit mum since the 21st March when she was admitted to hospital. She's been at the care home for three weeks now so still early days.
 

Palerider

Registered User
Aug 9, 2015
1,935
North West
watkin.observer
Thanks everyone, I'm up for work and still stinging from the reality of yesterday. I am thankful though that mums journey has shown very beautiful sides of her character over the last few years and I have grown to understand her more as she shows parts of her that are truly inspiring. A loving soul, kind and always generous and even now that shines through if we choose to see it. Some things are precious to hold onto and mums personality and being is one of them. I just hope that above all else she is not distressed and able to be content as she can be.

I can't help feeling it will be a teary drive to work this morning as life gos on....😞
 

Sarasa

Registered User
Apr 13, 2018
1,696
oh @Palerider, that is a lovely post about your mum. I think dementia distils people's personalities so you see the essential person that they are.
Take care of you, and drive safely.
 

Palerider

Registered User
Aug 9, 2015
1,935
North West
watkin.observer
Its all very surreal at the moment, but as the property market begins to open up again with lockdown being lifted I have to start moving forward and sell this property. So as I have a few days off I thought I'd best start clearing the house finally, but rather stupidly I can't seem to part with anything and have given up on the exercise for today.

So I have drifted to other things and thought about having a large print made of mum with her old cycling buddies to hang on my wall in my new abode -wherever that will be. So nothing achieved today and I fear this is going to be difficult! I even found a tub of sage that I had completely forgot about that my grandfather had rubbed before he died -mum has kept it all these years, she was very close to her dad and thought the world of him, so here it is. It says parsley on the outside, but its sage -I won't open it as I dread to think what its like now after nearly 53 years:

20200521_195944.jpg
 

Palerider

Registered User
Aug 9, 2015
1,935
North West
watkin.observer
Woke to grey skies and rain. I seem to be waking up having only njust gone to sleep these days and haven't had a lie in for a very long time. I seem to be on edge all the time of late -I think I know why. I am constantly thinking about mum and the current situation that was never anticipated, that of lockdown. I have even been looking at life like pet cats as way of comfort for her and to try and resolve my own internal struggles -the reviews are good (mostly).

I am again listening to Radio 4, and the ongoing reporting of care home issues and the language used is beginning to annoy me somewhat. Its all very well raising concerns about 'protecting' staff and residents and inviting comments from care home organisations, who incidentally as private providers seemed somehow to fail in their responsibilities. But what is really getting to me is that no one in the media or anywhere else is addressing the real needs of those affected -the people who are living with dementia and their world view. And I am sick of hearing things about what the 'science' says -science has no moral code, that is for us as a society to decide! Rant over
 

Pete1

Registered User
Jul 16, 2019
866
I'd best start clearing the house finally, but rather stupidly I can't seem to part with anything and have given up on the exercise for today.
Hi @Palerider, it is a really tough job, emotional and really daunting. My sibling came over for a couple of days and we went through everything and agreed on what we would keep and removed that from the bungalow. I then had a couple of charities (that Mum supported) come round and take what they thought they could sell (not sure if they are doing that at the moment), one of which furnished properties for vulnerable people so they took a fair bit. I then paid for a house clearance company for the rest of it (it was worth the money as I could just leave them to it - I couldn't bear to have done it myself).

I can only imagine how painful the situation is with Mum it isn't one you could possibly ever have envisaged and it is only natural that it is always on your mind.

But what is really getting to me is that no one in the media or anywhere else is addressing the real needs of those affected -the people who are living with dementia and their world view.
I think you have hit the nail on the head. It's about health AND wellbeing and there needs to be a focus now on the latter, to consider some workable safe solutions that will allow close family to visit loved ones, perhaps by appointment and perhaps for only a short time.

Stay strong, all the best.
 

Palerider

Registered User
Aug 9, 2015
1,935
North West
watkin.observer
Thanks @Pete1, I think I will have to consider the same on clearing the house as this is just overwhelimg. Everywhere I look I see memories and things that we probably wouldn't keep but strangely that doesn't matter. Something is going to have to happen and soon -no one will do it for me (I'm open to offers btw 😁).

Anyway I got a phone call from mums new mental health team today. First time they have called me since mum moved. They have reviewed mum and her donepezil and asked if I agreed to reducing her donepezil to 5mg to see if that reduces her hyperactivity and agitation with the possibility of switching to memantine. I agreed without any quarms and the nurse on the end of the phone seemed surprised. Why wouldn't I agree? I'm no expert but doenpezil is a holding measure, designed to slow progress of dementia. Its serves no useful purpose now mum is the advanced stages and could be making her worse than needs be and I was relieved that they have finally reviewed mums dementia medication. I remain hopeful that we can reduce mums hyperactivity and agitation to a level that gives her some rest and comfort and some peace from this awful disease.
 

Helly68

Registered User
Mar 12, 2018
703
It's really interesting that you say that about changes to Donepezil. My Mum is also in late stages and I wondered how much of a difference it made. Also, Mummy went on Lorazepam for a while, which we all (eventually) agreed turned her into a zombie, so we stopped using it. However, I found it hard as I was expected to give a view as her advocate (and I totally accept that responsibility, though it terrifies me) but I have no clinical knowledge. We were also balancing a hoped for reduction in her asbo behaviour (hitting, kicking, spitting etc in personal care) with giving her so much medication that it in itself affected her. It is tough. And then sometimes, as you say @Palerider, if I agree or disagree they are surprised.
She's off Lorazepam now as we finally agreed her "decline" was in some part due to the drug itself. Dementia is so complex it is like solving clues in the dark. I worry all the time have we made the right decisions, but we can only be guided by the professionals (whilst keeping a sharp eye on things) and do our best.
 

Palerider

Registered User
Aug 9, 2015
1,935
North West
watkin.observer
It's really interesting that you say that about changes to Donepezil. My Mum is also in late stages and I wondered how much of a difference it made. Also, Mummy went on Lorazepam for a while, which we all (eventually) agreed turned her into a zombie, so we stopped using it. However, I found it hard as I was expected to give a view as her advocate (and I totally accept that responsibility, though it terrifies me) but I have no clinical knowledge. We were also balancing a hoped for reduction in her asbo behaviour (hitting, kicking, spitting etc in personal care) with giving her so much medication that it in itself affected her. It is tough. And then sometimes, as you say @Palerider, if I agree or disagree they are surprised.
She's off Lorazepam now as we finally agreed her "decline" was in some part due to the drug itself. Dementia is so complex it is like solving clues in the dark. I worry all the time have we made the right decisions, but we can only be guided by the professionals (whilst keeping a sharp eye on things) and do our best.
Its a tough one @Helly68 and thankfully we have specialists to make the decions with our inclusion (in a perfect world)

Yes I'm not a fan of lorazepam or any of the other 'pams (benzodiazepines) especially in the elderly, they just can't clear the drugs as quickly as someone younger can plus they are like using a sledge hammer to crack a nut (as an equivalent comparison) so need to be used wisely. Sometimes they have to be used, but always with caution.

In general most drugs are actually crude ways of treatment, the ideal drug being one that solely targets the problem (yet to happen). We can only accept that medications are designed for particular use and once they are no longer indicated then we have to re-think what next? I think many of us place a lot of hope in medications, but it really is a hit and miss affair. Mum has done well on donepezil and I think it has extended her life to some degree, but it doesn't stop the disease from eventually advancing which is where we are now at. Its no longer a matter of slowing progression, but managing the end stages as best as possible, and I think they were surprised because people do for whatever reason hang on to medication, when its proably time to stop or change it. But as you say @Helly68 'Dementia is so complex it is like solving clues in the dark'.
 

Palerider

Registered User
Aug 9, 2015
1,935
North West
watkin.observer
I spoke with the nurse yesterday about things and how mum was. She isn't as animated as she has been before and its hard to tell if this is her pain relief and sleeping tablets or disease progression, probably a mix of both. She couldn't walk yesterday and went into the dining room in a wheelchair, which is now becoming a common feature in mums life. Her nurse has agreed to let me see mum as she feels this is now a significant deterioration. She has stopped eating again and only takes mikshakes and cups of coffee (which she has always liked) and the occasional bar of chocolate. So I'm hoping the wind dies down and we have hot sunny days so they can bring mum out into the garden provided she isn't sleeping or objectionable to being moved.

Its hard to see this as no doubt countless have done before me and will after me, but I have to keep faith that this was the best way forward in the end.

“Faithless is he that says farewell when the road darkens"

J.R.R. Tolkien​
 

Pete1

Registered User
Jul 16, 2019
866
Hi @Palerider, it's very painful to witness, although it sounds as though Mum is comfortable which is all you can ask for at this stage. I really hope you can get to see your Mum soon. Stay strong.
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Sounds very hard 🤗 I think weather is supposed to improve from tomorrow, temperatures going up. I hope you get to see your mum soon x