I wake this morning, still dark and much much colder, there is a definite chill in the air this morning.
I sit writing my blog, distracted from time, I suddenly realise it’s light…oh no the sunrise! I quickly rush around to get dressed. Rushing is not good when you have dementia as you only end up going round in circles confusing yourself! Eventually I’m out of the house late for the sunrise or so I thought.
Just managed to see the sun rising…Wow! How I love to watch…It’s just a beautiful start to any day .
The geese are waking very noisily, as they fly off into the early morning sky.
As the sun wakes the ducks on the pond wake
Time to leave nature behind. I will be back another day, with hat and gloves as it was Freeeeezing this morning!
Over the last few weeks I have been making short movies with the help of an app. I do get lost in what I am doing so it takes me a while. My first one was for my Mum and Dad for their Diamond Wedding Anniversary. My latest short film is about Dementia through my art work. You can watch below
Another grey day but at least it’s fine for the moment. A nice easy walk to the beach this morning.
The weather is trying it’s best to clear and looks quite promising in some area…then when I look the other way, just grey and misty.
The subject of Ageism seems to have be brought up quite a few times over the last week or two…Don’t know if you have ever noticed the name of my blog Too Young For Dementia and why I chose that title.
I chose this title simply because…when I had received my diagnosis and we began to explain to people that I had been diagnosed with Early Onset Alzheimer’s, the overall majority reaction was …No it can’t be! …That’s not right!…You are far too young!
Some said “Well that’s not too bad it is only Early Alzheimer’s”
Early onset does not mean caught Early.
Early onset means Young…under the age of 65.
Ageism…does it happen in other medical diagnosis’s? I suppose it will in some diagnosis’s, but it’s like anything if it’s not happening to you or someone close to you, you won’t even realise it’s happening
One thing is for sure, It definitely exists with a Dementia diagnosis and it continues for years after.
I still get the same comments to this day, nearly 3 years on.
It’s that look of Shock…the look of Horror on people’s faces, then the …
“No it can’t be Alzheimers your far too young”
I wonder if I would have receive the same comments if I was in my 80’s …Probably not! People would have then possibly said…
“Well she is in her 80’s”
Dementia is always accepted in your later years?
So why can people accept Dementia in younger years?
Because for years it has been classed as an old person’s disease, or that is how it is perceived.
I once had a family member, stare at me and say “ Well I have never seen anyone at your age with Dementia before “
WE DON’T LOOK ANY DIFFERENT!
WE DON’T TURN INTO GREEN MONSTERS!
WE ARE THE SAME PERSON!
WE ARE NOT ALL OLD!
Comments like this happen all the time…Makes you feel like you are a fake or the diagnosis is not real. Oh its real! I’m living with Alzheimer’s and I definitely know it!
There are thousands of people in the UK alone, living with Early / Young-onset dementia
Dementia with Lewy bodies
Posterior Cortical Atrophy.
Any many more
So next time someone says “ Your Too Young to have dementia”.
Just remind them there are over 42,000 in the UK alone under the age of 65 living with Dementia.
Well I slept like a baby…those babies that wake every couple of hours!
I can hear the rain…it’s throwing it down! What a miserable start to the day!
I decided as the weather is so bad I will do the monthly food shop. I don’t know what it is with me when it comes to putting the shopping away but it takes me ages. I think it’s all the different cupboards, remembering where everything goes could be one of the problems!
When I put the shopping away now I open every single cupboard door so I can see what’s inside. The kitchen looks like a bomb site, with bags placed all over the kitchen floor, items on the worktops…it’s organised chaos! To make matters worse, we are also having to use the garage as storage as well while the building work commences, this is not ideal but we have no other option at the moment.
Shopping away at last, I have a FaceTime with my daughter Vikki.
The youngest of our grandchildren is a little off colour with a sickness bug, he was definitely not his normal self at all, bless him.
After we had chatted for a good while it’s lunch time, so we say our goodbyes.
Back to listening to the rain… I am now wishing the rain to stop, so at least I can get out for a walk.
My wish worked! …a fine spell, wellies on, coat on, camera in one hand, Toby’s lead in the other, with Toby attached of course! Off to The Towers, a little woodland area.
It’s a little wet and slippery in some areas with all the wet leaves underfoot, but I really don’t care
I just feel the need to be outside with Nature today, with the amount of fungi / toadstools around, I could quite easy imagine one or two fairies popping up in the woods as it was quite enchanting.
We move on to see the ducks…look at these 3. They all have a different coloured beaks.
Three must have been the number of the day! Three more ducks on a log.
I’m not particularly an Autumn / Winter person, but I do love the colours Autum brings
Our walk is done, so glad I went when i did as not long after I returned home, the heavens opened again. Heavy rain again!
Well sleep was rubbish last night, eventually I did get to sleep in the early hours of the morning, which resulted in me waking a little later this morning.
Lots of things on my mind…I definitely think too much!!
Today is a down day…Today is one of those days when I prefer my own company…I don’t want to pass on my negativity
This is a really tough journey and me and hubby are only at the beginning…Tell you what I certainly wouldn’t want to look after me!
( I try to make a joke, deep down this it’s reality)
The ups and downs of living my Dementia journey. One day can be really great, I feel like the real me …No fuzz, no confusion, just me…Gail.
Then other days…well that can be anything from confusion…Fuzzy Fog…Anxiety…No sleep…clumsiness…forgetfulness…Loosing my words…Balance issues…The loneliness…I could go on but I’ve forgotten!
There I go again a little humour is thrown in. Trying my best to make light of my sidekick whom I could quite easily strangle this morning! The feeling of loneliness…uselessness is trying to get to me today.
Need to give myself a good talking to as I am still sat here at 9am…10am still not dressed…No motivation to go for a walk with my best pal…Doesn’t look like Toby is motivated either…he is fast asleeps beside me in his basket.
Everything feels so hard work…it’s like I am walking around with lead boots on…definitely a slow motion day today.
The feeling of loneliness, emptiness.
I potter around and bake some biscuits, I really don’t know what to do with myself. I could join a zoom meeting at 11.30am but don’t think I would be great company and I really don’t want to bring the others down too.
I send my apologies and miss the meeting
Back to mooching around
I need to join the Zoomettes tonight as the facilitators of the group are leaving, so me and hubby have an early tea tonight.
Mask on…Smile on…I join the meeting
Unfortunately I must have miss read the email…rearranged for next week, so no facilitators.
Don’t know what is wrong with me today but it’s just not happening!
I thought joining Zoomettes would give me a boost…It wasn’t to be this evening.
Zoom meetings are great, but nothing beats face to face so you can chitter chatter with one another. On zoom you have to wait for the right moment…the right moment just didn’t happen tonight.
Definitely missing chitter chattering in person. Just a shame we don’t have any Deep Groups nearer to where I live.
We was supposed to be going over to see my parents this morning, but plans have been changed…not to worry we will be going over Sunday instead, my Mums made the suggestion so we could finish off the roof before the rain makes an appearance on Sunday.
Hubby back on the roof…I was supposed to be helping but I’m not needed! Is it the fact I’m not needed or am I now more of a hindrance, that I don’t know.
Times like this, I Absolutely Hate Dementia with a passion! I have always been involved with most aspects of DIY…Not as much now!
Is it because I am not able?
Is it because I’m too just slow?
Maybe just trying to be kind in their own way.
Today I have been down graded to brew maker! This is actually harder than sanding an area of the roof
Hey, Ho! Obstacles and Dementia!
I will rephrase that…Not obstacles! …Just people!
Just a down day on the renovation front! Well at least we have a roof now.
Just a wobble for me…Hopefully I will be back on track soon
Tough to accept there are certain things I just can’t do anymore, which is frustrating and demoralising.
I did spot Mr mouse with a Mrs mouse later in the day they certainly distracted me for awhile
I think we most probably have a family of mice! As long as they stay in the garden they are fine…Perhaps they have taken residence in the fairy garden.
You have to admit they are kinda cute…very entertaining to watch!
By early evening just not feeling 100% most probably tired, nothing that a good nights sleep won’t solve.
Sunday 17th October 2021
I slept so well last night only waking once, do I feel refreshed? Not quite refreshed yet…It is only 6.30am
I look out the window…Rain! How I wish I had gone for that walk to the park yesterday while the weather was fine, never mind there will be other days.
Late afternoon we are on the motorway heading towards Nelson, the traffic is horrendous, we take a bit of a detour before even reaching the motorway, only to get stuck in traffic again on the Preston motorway.
When we are finally on the move again, we are a little late to see Hubbys Dad, so a shorter visit unfortunately. We then move on to my parents in celebration of my Mums 80th Birthdays.
I handed my Mum her presents with an apology…The personalised present that i had ordered for Mum was wrong…My mistake! I definitely had a sidekick moment and made her 20 years younger, which was very nice of me! I was a little worried how she would react.
The last mistake I made within the family caused Major problems.
Mum was fantastic about the mistake and was very understanding which was a relief. We then set off to favourite restaurant …The Beijing 😋😋
Good morning Wednesday…oh it’s a happy morning for me and Toby, we are going on a walk this morning…only a short walk…
It’s a start 😊If I had a tail like Toby it would definitely be wagging this morning!
Nature Reserve here we come!
Even though it was a grey dismal day, I was just so happy to be back out with Toby.
We didn’t do very much walking, more like sitting and watching the world go by… with a few photos…of course!
I love just watching!
Look at this little guy…catching breakfast!
Model planes are flying high this morning.
After an hour of being outside it’s time to get Toby back home. I think he has enjoyed his time outdoors today.
Later today I have to have a medical, via my doctor for the DVLA
After my appointment I was so angry. Why is everything such hard work where dementia is concerned.
Does dementia make you invisible?
You would have thought so, as my doctor spoke over me for most of the time. He also cut me off mid conversation as if my words were not important…Did I really speak? …Did words actually come out of my mouth?
Just because I have dementia does not mean I am unable to communicate!
I was asked how my dementia affected me, whilst I was replying about burning myself with the cooking, forgetting my PIN number and having my card blocked…The doctor cutting me off mid conversation! He responded by saying, “was I really safe to drive if I was confused with the oven” Grrrrrrr!
Then in another breath he said I was possibly ok. “ You can suddenly deteriorate quickly. I explained I was trying to stay positive and keeping active…I got a nod and a good!
Then he proceeded to talk about to medicate or not to medicate as France have stopped Donepezil, and other acetylocholinesterase inhibitors
After speaking over me for most of the 20 – 30 minutes I left feeling a little deflated and angry.
Nothing…Not Nothing is going to Change the way people think about dementia, if medical professionals treat people with dementia in this way!!!
I was out of bed much later this morning, which doesn’t matter as Toby is still resting.
I have a zoom meeting this morning with the Yorkshire Ambulance Service, so time to get my brain into gear as it’s not quite firing on all cylinders yet!
10.30am time to zoom. A lovely smiling face greets me as we chat away about dementia, the ambulance service and my sketches.
I have been asked to produce a sketch, if I can, for a celebration event they are planning early next year.
I am so excited…I just hope I can create something fitting for their wonderful celebrations.
I can not believe I have been asked…it’s another pinch myself moment!
What an honour!
So after lunch I decide to make a start with a sketch, we can only see where it takes me.
I get so excited when I’m asked to do a talk…a poem…a sketch…anything really, it brings purpose back into my life. Once again I’m motivated!
I suppose I’m a bit like a dimmer switch…switch my brain on and my light will shine bright, my energy is on a high. When I’m not involved in anything, my light is dim, motivation is low. We all need a purposes in life no matter how big or small, this is why it is so important to keep people with Dementia involved. It brings that sense of purpose back, the feeling of being important once again.
When you have worked all your life then suddenly stop, you loose all senses of purpose, life doesn’t have that same meaning anymore, your days become boring and mundane. This is where a hobby or interested comes in very useful for occupying time. Nothing quite fills that gap of being needed. I suppose like being asked to ( good grief can’t think of the word !)
No matter how small the task maybe. Just that ask…That little job makes a person feel useful, keep our brains active. Makes us happy!
Over the weekend I found some of my old school reports.
Art and English…My worst results!
Out of the 3 reports I found my result where very poor. English literature, my teacher said “ Gail would be advised to drop English “
Well Mr English Teacher from Edge End High School… I now write poetry!
Also my Art teacher said I was disappointing!
Time, patience and a little more encouragement was most probably all I needed!
Lucky for me I now have the time and patience to sit and enjoy the things that interest me…Thats one thing I can thank my Sidekick Alzheimer’s for!
I wake around 6.20am, I can hear Toby winging outside my bedroom door, up I jump trying to get my bearings as it is still so dark. I open the bedroom door and there he is, so pleased to see me. He try’s to jump up…his leg fails him as I quickly try to stop him. This must be so very difficult for him as I bend down to give him a good old rub though his wiry black fur, with those deep brown eyes just melting through my heart.
He hobbled down the corridor to the kitchen, he knows the morning routine so well. Only now we can’t go walking together, which is a big blow for both of us.
At around 7.15 me and Charlie try to sneak out…that didn’t work…radar lugs (Toby) heard me getting changed. I absolutely hate leave him behind. I know he will sulk with me on my return…My punishment for leaving him.
What a gorgeous sunrise this morning
As I stand watching a the as it sun rises…Beautiful so beautiful
Then something catches Charlie’s attention, he pulls on the lead dragging me into some brambles…Ouch! Ouch! The bramble is somehow wrapped around my ankle which has now ripped into my skin…ouch!!
A few choice words said…Not amused with Charlie, I sit on the stone bench which is nearby, distracted by the stinging of my ankle I’m now finding photograph hard to capture as my hands are shaking
A couple of swans fly over but just can’t focus, we head towards the pond with blood dripping from my ankle it’s only a quick stop at the pond
A swan takes off from the pond, I’m just not quick enough to get my camera ready…interesting photo! Ha! Ha!
Ducks and swans fed, we head back to the car.
Time for home…Time to get cleaned up!
Home… hubby cleans up my wound and removes thorns.
This week hubby is on annual leave…time to get our kitchen roof on to the extension.
Hopefully by the end of the week we will be watertight at last.
A short walk to the beach after tea to watch the sunset and just a little walk with Toby, slowly slowly does it. It’s going to take time, I don’t want him to overdo things.
Today I have watched the sunrise, the sunset and the Moon wake! Can’t get better than that!
Yesterday Toby had to visit the vets. Poor Toby is really under the weather, hobbling around, sleeping mostly, such a sad sight to see, especially when he is normally full of get up and go… He is my best pal and I can’t make it better for him…I’m am trying.
The vet has now given him some painkillers, he thinks Toby has torn his cranial cruciate ligament, how he has done this is beyond me…one minute he was fine the next he was limping, holding his leg up so it didn’t touch the floor. The only thing we can think of is that he has jumped up or off the chair / sofa twisting his leg
I never would have thought my walking buddy would not be able to walk with me…this is so strange, I feel like a part of me is missing!
Toby is my best pal…he looks after me…he watches out for me…he keeps me safe.
Walking without him is not the same!
Leaving him is even worse!
This week Charlie has been keeping me company on some of my walks. He definitely didn’t like the park this morning …it’s not the beach! There are no pebbles to dig! Charlie is not as patient with me when I keep stopping to take photos. Think that’s because he is a lot older, just not used to my routine and also he just can’t be bothered with long walks now, he likes his home comforts too much.
Surprisingly the birds didn’t like Charlie, the geese warned him off by Flapping their wings as they walked towards us.
All the time I have visited the park, non of the geese or swans have ever raised there wings when I have had Toby with me, so I was amazed this morning at there response.
Not wanting to upset the geese by Charlie’s presence we head off capturing photos on our way around the park
The young swans plumage is now changing as their white feathers are starting to appear…soon will be an elegant white swan
Just like Mum and Dad
Lots of swans around this morning…one of the swans definitely busy keeping all the other swans in check.
Always a squirrel around…looks like he’s found breakfast!
Mr Crow hopped by for some food. I find crows so comical. He watches as I put my hand in my bag, it’s as if he is saying “something in there for me Mrs” Mr crow tilts his head. Keeping a safe distance from me this morning as I reach in my bag for some food. He knew I would have food just a little wary this morning…new kid on the block! Charlie!
They are back…The Cormorants are back in their favourite tree in the centre of the pond.
We leave the park and the autumn colours as the leaves are gently falling on the pathway s
Over the bridge and back to the car, our walk is complete.
10th October 2021
Don’t feel like walking this morning, leaving Toby upsets me too much..his sad eyes looking at me as I leave the house, the winging and whining in the distance as I go down the driveway…No I’m staying home with my best pal!
I have plenty to do around the house and garden to occupy me, so a day at home suits me fine.