Guilt as a carer

Guilt as a carer
“How’s mum Lou?” Pops into my inbox several times.Often, it’s too much to even think about.The answer isn’t going to be good. Every time.
Those who mum talks to think she sounds the same.She doesn’t have an awareness of how the clock is ticking for her.Likely a good thing right? Well let’s face it, dementia and heart failure is only going in one direction and I’m nothing if pragmatic.Which means, I deal with things without my head buried in the sand.
Right now, my head IS buried in the sand.
So, heart failure means the heart isn’t pumping as it should. Mum has diastolic dysfunction. Which means it isn’t filling up as it should.The blood can only back up into the lungs, creating a cough. Initially I explained this to mum.Yet she now says, “Ohh gota bit of phlegm.” Or “Ohh silly tickle.” And there’s not much point keep telling her. Why? To create panic?What’s the point?
So dementia, yes, that’s going to be horrific if it gets much worse.I am not sure I understand it as well as I s…

Finding a middle ground - this was ALL my fault!

The past few posts have been negative and angry.

We are now somewhere totally new. This is a good thing for all concerned.

Mum is happy and comfortable. I am happy.  I'm living my life as well as making sure she has her basic needs met, gets to Cogs club and sees her friends.


Me trying too hard is why I ended up crumbling to the point of needing lots of love, care and medical attention. I should have just been me. Accepting that this has to be enough as this is all I can give.

Now, here we are with me off to hospital and having treatment. Mum didn't seem to happy about having to get a cab to her cogs club but I'm unable to drive for a couple of days due to the anaesthetic.  That's just bad luck. Accepting that mum will always demand her own needs first, putting mine second has made me feel differently about things. Don't get me wrong, if she was in hospital of course I would drop everything and be there.
I should have allowed her to get on with doing her t…

Realising how things are.

This post is sad.  But factual.  And I'm ok with it.

Bringing mum away on holiday happened by accident really.  She commented on Jasmine and I going on holiday and how she would like to go too.  I bought tickets and surprised her for her birthday.

Wondering if this might be a time where we can get close at last in these twilight times of her life, I was hopeful.  You see, as a child, i never was hugged or kissed or told I love you.  I have mentioned this before and I carry it like a sad trophy or something.  Yet it's a heavy burden and I wanted to get rid of it.  Let's face it, many kids have been through much worse. I wondered if this trip might see that happening.

I was wrong.

I don't recognise mum sometimes.  Perhaps I look at her more.  She has a habit of clenching her teeth which is new. She also frowns just a little more than she used to. Although she has always frowned.
She has, in my eyes, always had a sharp tongue.  I  never forget the mornings she flew at me…

How people can make you feel

What a difference a comment can make.

Ok, so Dad always referred to me as 'sensitive' in a negative manner.
Yes, perhaps those comments helped me to become sensitive in the first place, with so much criticism being thrown at me growing up. Then paranoia can creep in.
"You always take things to heart." I was told.

Actually, this can be a good thing. Being passionate.

I have raised my two children to embrace who they are, however other people look at things.
That said, a simple comment from an onlooker can definitely change how you feel.

Over on my other dementia blog, which I definitely can't seem to get back now, I wrote a post about someone telling mum she doesn't have dementia! Remember that one?  I was furious! Well, the past few days have seen some similar emotions come bubbling to the surface.

Gatwick airport is fantastic for Special Assistance and I have created a Youtube video all about it!
Yet what they might not realise is how wonderful one of the la…

Hospital updates

I was keen to see what the cardiology people would say at mums appointment.  

My previous blog outlined her Mobitz2 symptoms and her diastolic disfunction.  Now just recently, as I use the pulse oximeter to take mums obs I can see her oxygen levels average around 91-93%.  We ideally want to see 99%.  This reads the oxygen in the blood which is being carried around the body to the organs.  Likely to be causing damage at these levels, I do like to see what is going on.
It also gives a pulse/heartbeat pattern which is fascinating to watch.

Mum flatlines on every 3rd-6th beat.  Then it bangs one big old pump and has two mini pumps then the few normal ones again.  Much as I'm aware this isn't right, I wasn't totally sure what this might be telling us.

Back last year, after her heart attack, she had a device fitted.  Clicking that link shows you all about it.  It doesn't do anything to the heart except read it.  Clever right.  So at any time, she can goto cardiology at our local…

A rock and a hard place

If you followed the blog previously, you will know I'm trying to do my best for mum as we progress with dementia.

There is a common phrase of 'living well with dementia' which I have heard the professionals use.  It says what it does on the tin.
Now, do you wrap her in cotton wool and not actually let her live or do you sometimes push some boundaries to fill life to the brim while you can?
I'll quote someone clever who no doubt reads this blog and won't mind me using her phrase,
"Would you rather be the one looking out the window watching all the others conga down the corridor? Or would you rather be in the Conga?"
Speaks volumes right there!

Remember Tommy Cooper and the famous way he transitioned from this earthly life?  On stage, with people laughing.  Everyone at the time said what a fabulous way to go.  Doing what he loved.

Yet here I sit, listening to her coughing while i tap away on the keyboards (writing for so many reasons, not forgetting the fa…

Technical errors

This is annoying but a bad sentence to start a blog about.  A blog post which is supposed to infuse positivity.

Yet Siteground are the hosts who have taken down my website (I refused to pay them the hundreds of pounds they wanted to host my site for another year- so in theory, my fault) and I can't get it back without paying them more money.  Sad really as this held memories of my writing from our adventures with mum which was the whole reason I started a blog. To remember the journey from diagnosis to crossing over.  They won't give me back my writing and it's made me feel a little sad.

So, in case you don't know, running a blog costs a lot of money and time.  But it's something I love and can't get enough of. Sometimes you will see some links on the blog which have affiliate links to them. This means if you click them and buy something, it helps to earn a few pennies on the blog so over time we hope this will help to finance running the blog (it doesn't c…