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sicut animam suam : 'it's just life'

Palerider

Registered User
Aug 9, 2015
2,127
North West
Well here I am after my thread 'A lifelong friend and me'. The reality is that I could no longer continue with that thread because the attachement I had with it had become too upsetting and also unproductive -I had nothing left to say other than repeat the same events in different ways. But more significantly I couldn't bear the association I had made with my mum and the growing disparity -I am a human being with love and memory and as much as I understand dementia it makes no difference in the bond it has broken between me and a close friend, one of the closest friends I will ever know in my lifetime and so that thread had to end for my own sake. Yes it has helped me personally in ending it, but I am not yet free......
 

Dimpsy

Registered User
Sep 2, 2019
1,588
'IT'S JUST LIFE'
It's our life and we share this dementia journey.
@Palerider you give cool / clear advice to so many members.
Don't fade away 😢
 

canary

Registered User
Feb 25, 2014
13,907
South coast
Im afraid that dementia destroys so many bonds. Im still at home with OH, but I no longer feel like a wife. We used to be soulmates, but now Im just a carer/housekeeper/general dogsbody and all he can see are his own needs wants and comforts. Every day is groundhog day.

I hope you can work everything out, I value your input on here
((((((((((((((((((hugs))))))))))))))))))
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
Today wasn't the best of days weather wise. I had to drive to check on the house and through the country lanes the late days sun shone through the grey skies and gave a warm glow to the autumn leaves -it was quite stunning and made me think of course of what once was.

The house had a musky smell, the heating has been left on low (10 degrees) as per advice by the insurance company. I collected the mail, a small pile of mostly junk and letters addressed to mum from various charities she had supported with the their Christmas take on the year -ugh...sigh! I wasn't sure what to think as I had flashbacks to better times and deposited the post into the bin bag I had left -just in case. The house was silent and I didn't linger too long other than check the locks and inspect for any possible problems.

From there I drove on to do some toiletry shopping for mum. I was thinking how often she showers now in the care home compared to what little I could achieve at home -I guess that was a minor stab at the guilt I still carry. Anyway as I aimlessly wandered round the supermarket things began to fall into the trolly -some perks and little treats as well as shampoo and shower gel and of course tubes of steradent. I am not sure if the weight of none toiletries was more as the small pile of chocolate grew (a screaming guilt complex), I even popped one of each Impulse flavour into the mix. All topped off with mums fave drink -limonata -bingo, job done.

On the way got a call from the care home manager who wasn't the care home manager (confused.com). She was actually the care company ops manager who was overseeing the replacement of the previous interim manager -now I was very confused.com. Sometimes I wish my handsfree didn't work, it would save a lot of confusion! Turns out the last manager was only temporary after the one before that got sacked and a new manager is due to start -to be honest at this point I had stopped listening and was doing the add-in sounds 'yup' 'mmm', until she said they were building a visiting pod. I shreeked with laughter 'a what?'. Better than nothing although I am not sure how that is going to work. Anyway she closed by telling me how mum is in that patronising way some professionals have to which I reverted back to the autpilot responses 'yup' 'mm'. Bless her, perhaps best being an ops manager.

I arrived and realised what I thought was only a small bag was actually huge and filled with goodies -ooops! Mums nurse F was on but busy so couldn't meet me at the door, but the receptionist who is brilliant filled me on things and they hoping to start visisitng very soon with the new pod -uhm, ok thats great but I am not sure you'll get mum into an 8ft by 8ft pod, though I was impressed that they had done something at least.
 

Just me

Registered User
Nov 17, 2013
494
That’s such good news @Palerider and I hope you mum will use it.
I know what you mean by overdosing on the treats but it’s difficult to stop and gauge how much they will have eaten since last delivery. Anyway you can never have too many treats.
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
Glad to see you back. I too hope that somehow the ‘pod’ works for you and your Mum. May the new Manager be a good one.
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
Thanks for the welcome back wishes guys. I did ponder whether to continue, but realised I needed a space still to write for now.

I haven't revealed that a week ago I was taken ill again with the same heart condition I had in May last year and have been off since re-couperating and with more medication, which slows my heart down but also spaces me out a little. The doctor I saw agreed that this was all stress related and when I told her the whole story she was astonished at how much of the situation over the last 9 months has affected me. We looked at my chest x-rays from last year and the one from last week and it was clear my heart had changed shape, being larger last year and now back to more is normal size for my age. I am finding the current situation not being able to visit mum quite unbearable on some days as I know there is limited time left. There's a condition called takotsubo cardiomyopathy and we are wondering if that is my current medical condition as otherwise I have never had any problems.

caring for someone with dementia has many strings attached, but for some of us those strings are heart ones
 
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Woo2

Registered User
Apr 30, 2019
2,975
South East
I’m so glad you stayed @Palerider as I appreciate your advice and also I wanted to hear still how you and your lovely mum are . I’m sorry about your heart problems, and hope the recuperation period is helping a little . Take care of you.
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
Sorry to hear you are poorly. Not surprising with everything that has been going on and continues to go on in your life. I hope the break from work will help a little as that must be stressful too. I just keep hoping the CH works out a suitable way of you visiting your Mum soon
 

Spamar

Registered User
Oct 5, 2013
7,510
Suffolk
Hi, sorry to hear about your health problems’
There was a lady on 24 hours in A @E tonight who also had heart problems caused by anxiety. It was initially thought the lady had a heart attack. I dont think people realise how severely things can affect the body.
Hope you recover fully soon.
 

Dimpsy

Registered User
Sep 2, 2019
1,588
Watching the news, it looks as if organising ways for family/ friends to visit loved one's in the flesh has become top priority, and measures are being trialled in the county I live in.
I hope, hope, hope that it won't be too long before you can cuddle mum x

Aside: stress is a killer. My OH who was healthy as an ox/ horse (?) had a heart attack 18 years ago, purely down to work related stress.
Thanks to the paramedic Kevin who attended and SGH he survived.
And thanks to RD&E for saving his life this year.
God bless the NHS.
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
Thanks @Spamar -stress related heart problems currently run at about 2500 per year in the UK population. I am waiting for further investigations, but as this is a repeat episode although not as serious as last years (which resulted me ending up in resus in ED and being shocked) it fits with the criteria for takotsubo cardiomyopathy which you can read about below, I want to highlight this condition because I know as well as making me unwell there are possibly others out there where who experiencing it -or at least pre-cursors of it with everything that is happening to ourselves and of course our loved ones:

Once I know the final diagnosis I will post.

@Bikerbeth I don't worry too much about the manager of mums care home because mums nurses on her unit will do what they have to and have learned to rely on them and trust them -so far they have not let me down.

Thanks @Woo2 I don't know now where this road will go, but wherever it goes I will follow.

Thanks @Dimpsy I have been an avid and active campaigner for not only the current issues under lockdown and blanket banning of visiting in care homes, but also for a national change in dementia care and will continue to support The Alzheimer's Society in both those causes -there is much to be done and coronavirus is only one part of the bigger picture.
 

Sarasa

Registered User
Apr 13, 2018
2,011
@Palerider, so glad you've started a new thread, but sorry to hear about your heart condition. As my dear mother in law always used to say, look after you.
My mother's home is going down the pod route, I've expressed my scepticism too, but I'm happy to give it whirl.
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
Thanks @Sarasa

I have just come off the phone with mums nurse F (who is just fab) -mum is refusing to eat :rolleyes:, but the sleeping tablets are working -small mercies. She told me that infection control have said the care home are not allowed Christmas trees :mad:. Seriously! So at some point today I will be writing to the respective infection control group with an outline of why a Christmas tree is significant for care home residents at the risk of it also being envoloped in a perspex pod -the mind truly boggles! Things are bad already, but the one thing that may help with familiar feelings in someone with dementia is a Christmas tree 🧐.

On a better note F is going on mat leave at the start of December, but they have managed to recruit a replacement for her -so I am relieved plus E is coming of nights to days to help out over the Christmas period which is also a blessing.

The purchasers surveyer is coming at the weekend to survey mums house, so it seems the sale is close to finalising. I am off to check the house today and then drive to mums care home to drop off some new clothes one of which is a pair of new wide bottomed trousers with gold thread running through them -very glitzy, I know mum will like them, although by all accounts she is not in a good mood today and is wandering constantly. Mum still calls my name which is upsetting but there is nothing I can do as matters stand.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,009
High Peak
Just a thought about Christmas trees: I gave up having a real one some years ago but the place looked miserable! I found instead a Christmas Tree poster. It's huge and fits a standard door or could be put on the wall. Looks really good - beautifully decorated, etc. Might be an easier thing to disinfect...

(And you can roll it up and store it easily for next year...)
 

Louise7

Registered User
Mar 25, 2016
2,589
She told me that infection control have said the care home are not allowed Christmas trees :mad:. Seriously! So at some point today I will be writing to the respective infection control group with an outline of why a Christmas tree is significant for care home residents at the risk of it also being envoloped in a perspex pod -the mind truly boggles! Things are bad already, but the one thing that may help with familiar feelings in someone with dementia is a Christmas tree 🧐.
I was reading about this on the internet this morning. Apparently some local authorities have advised care homes that for infection control reasons they can't put up trees, baubles or tinsel as these can't be easily wiped down. Mum loves to see the lights and decorations at Christmas and last year I decorated her room and her chair with tinsel and glittery things and she loved it. Surely they can't cancel Christmas entirely :(
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
I was reading about this on the internet this morning. Apparently some local authorities have advised care homes that for infection control reasons they can't put up trees, baubles or tinsel as these can't be easily wiped down. Mum loves to see the lights and decorations at Christmas and last year I decorated her room and her chair with tinsel and glittery things and she loved it. Surely they can't cancel Christmas entirely :(
Meh I may have to indulge and write to the Daily Mail ;)
 

Louise7

Registered User
Mar 25, 2016
2,589
Good idea, I can just see the headline now "Council Grinches steal Christmas"! 🎅

Edit: Just read on the Rights for Residents Facebook group that the Daily Mail are running a story tomorrow about the banning of Christmas decorations in care homes and the reporter wants to hear urgently from anyone who is aware of a care home that is affected. Your chance to be famous @Palerider ;)
 
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Palerider

Registered User
Aug 9, 2015
2,127
North West
Good idea, I can just see the headline now "Council Grinches steal Christmas"! 🎅

Edit: Just read on the Rights for Residents Facebook group that the Daily Mail are running a story tomorrow about the banning of Christmas decorations in care homes and the reporter wants to hear urgently from anyone who is aware of a care home that is affected. Your chance to be famous @Palerider ;)
Great and I have the perfect picture to go with the story -mum and her Christmas tree
24883486_1844513972505399_6969407150913618864_o.jpg
 

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