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.

Off to Turkey

Smiling despite being confused

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 ladies was who served us on the till at WHSmith.  Mum and I were laughing as she was all confused at the till.  You know the scenario.  Boarding card? Who can ever find that?  You only want a bottle of water but 'Boarding Card?' and all that... so we were all laughing together about some silly things and the lady serving us was genuinely giggling with us.

"At least you can have a laugh about these things." She stated after I explained mum has dementia.

"Mother and daughter?" She continued and as I nodded 'yes' she cocked her head to one side as if to internally say 'ahh' and on this day, I felt I was doing a grand job!

Fast forward to today.  After the struggles which you can only imagine at the airport Turkey end we are finally settled.

Ok, I'll tell you what happened and lets hope for some 'carer brownie points' or as I call them these days (in poor taste probably) "Pearly Gate points" in the hope that my kindness goes some way towards counter balancing the things I might have got wrong in life when it comes to judgement day!

At Turkey airport, this poor local guy was pushing two people in two wheelchairs and trying to come back for mum every few paces who was also in the wheelchair. I told him I could  push her. Although  he would need to be slow as I am definitely slow too.  Of course, we lost him and I got through passport control, down the lift, luggage off the roundabout and then there I was with 3 pieces of hand luggage (thankfully one was my backpack), a suitcase (we managed just one at 20kg between us for two weeks - impressive!) and a wheelchair containing mum who was trying hard not to be anxious.

How did I manage?  With difficulty. But I was ok until we had to go down a ramp....., 

anyway...here we are and settled in nicely.

Mum is loving it.

But anxious I can tell and I would guess its a bit too much for her.  Yet each day she has laid in until gone 11am and we leave the suite in time for lunch.  I need to remind her of every step beneath her feet and she shakes with fear of falling over on the steps.  Life has gotten to be very much more tricky from the overly independent days she enjoyed 2 short years ago. 

We bring the pulse oximetry with us and the blood pressure machine just so I can keep an eye on her if she is feeling unwell or looking unwell.  There are many tweaks and a lot of commitment needed.

Everyone who knows mum knows she loves a chat.

We are like chalk and cheese.  I'm not sure if it's the damage that nasty people have done over the years or this is just my personality but I am very happy in my own company, 

my own space, 

my own bubble.  

Where as mum looks around, laughing constantly still and aiming to get everyone to talk to her.  

Chalk and cheese. 

Dad used to call me a 'bloody anti social cow'.  But, like, who can you trust to be decent and kind these days?  A handful of people.  I can talk to them until the small hours.  

Back to here and now.  

Mum got chatting.  A nice couple.  An innocent remark.  Fired me up and instead of sitting getting upset I corrected them assertively.

"Are you going on any trips?" They asked mum.

"Well yeah there was that one today Lou went on." Mum stated.

"Oh that wasn't a trip mum, that was the kayak." I informed her while remembering being able to see her constantly from the shallow water I was in while the staff took care of her drinks.

"Oh... Well... Yeah... You know what I mean." She brushed it off as she so often does these days.

"Mum has dementia." I stated to her new friends.  I don't like her being labelled but this was necessary as she confuses people with her random comments which don't always make sense.

"No you don't!" The gentleman informed us. "You are fine. You can hold a conversation." He continued and other crazy remarks came out of him.

"My mother is in a home. She has Alzheimers and Mixed dementia." The lady told us.

"Yeah well thats what they told me I've got." Mum said in a way in which it sounded like they were all in agreement that surely the multi disciplinary team of experts had got it wrong.  I saw red.

"She does have mixed dementia and please don't say she doesn't.  She is struggling, I am struggling and to undermine all that we are dealing with isn't fair and it really upsets me.  She is high functioning but her facts might not be accurate." I said rather forcefully.  Then I continued to tell them how she would inform people of inaccuracies like 'I'm having to have all my teeth pulled out.' Which simply isn't true, or anything like true whatsoever.

Dementia is not about forgetting what you walked into a room for and walking out again, or about repeating yourself or not recognising your loved ones.  It can be some, all or none of these things. What dementia is to me and mum is a frightening time. I'm seeing changes in her.  She is struggling with being confused.  

Our first morning here I had to give her instructions one by one as she told me, "Lou I really don't know what I need to be doing here." And I handed her deodorant and helped her put that on, then asked if she needed the loo before putting on her swimming costume, then shorts, then t shirt, and a hairbrush and all these things.  She was shaking she was so uptight about it.  We don't often speak of these things of course.  But it's the struggle that is real.  She looks at me so completely blank sometimes.  And she has a new gurning habit where she bites her teeth together constantly.  Which makes her face look different to before.  Which can be upsetting for me looking at her. 

Of course, things could be much, much worse.  For those families dealing with severe struggles, my heart goes out.  Mum calls me Jas - which is fine - but she knows i'm her daughter and I'm thankful for that.

But please, please do not tell someone with dementia that they don't have dementia.  It's insulting to the struggles and it's painful.

Please don't say, "You sound the same." OR act the same, or look the same.  Things are not the same.  

It was never in my plan to be a carer.  Yet here I am being asked, "Are you mums carer?" and I want to scream, "NO, I'm a career minded person who has always been a workaholic." Instead I shake my head 'yes'.  Of course I wouldn't have her anywhere else.  But I miss 'me' sometimes.  I've no idea who I am meant to be right now.

I opt for work which I know I can do around mum, including working online, yet motivating yourself for that when you are thinking for two is tricky.  So I guess for now, yes I'm a carer.  But it was never in my plans.

She's not ok.  She does have dementia.  It's hard for us all.  Please don't tell us she's acting fine.

4 lives are affected on a day to day scale and many extended friends are too.  My life is kind of on hold.  Maybe you can see why I snapped. 

All of this and of course, my health is having to take a backseat which the hospital cannot accept.  I'm being treated for Ankylosing Spondylitis which is progressing and heartbreaking, as well as surgery for crohns and the fatigue is off the scale.  Needing a 5 day heart trace.  Needing to cook gluten free for my coeliac issue. All while my vision seems blurred at times.

Who's my carer?

And I'm not fine either.