First blog post

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Making sense of not making sense.

My understanding of this disease is pretty much the same as most people. There’s lots of information out there but basically this is my take as a carer.

Dementia is a subject matter that scares the shit out of most of us.

It is scary because it’s incurable.

It’s scary because there is no 100% reason why it affects some people and not others.

It’s scary because it’s becoming more widespread.

Dementia is incurable because it isn’t totally known what causes the disease apart from the fact that parts of the brain die off.

We do know that Lifestyle, Diet, Physical and Mental exercise has its part to play as well as lifespan.

Dementia can be controlled by all of the above and medication.

Medication produces side effects which need more medication to control the side effects.

There is no complete evidence as to why some people are affected and some aren’t.

Early diagnosis has given dementia sufferers the most hope. Where in some cases a certain diet high in nutrients have reversed the symptoms, but it is rare.

The brain, our computer, is the birthplace of dementia, a complex organ that controls our whole existence.

We are relying on science to come up with a cure.

But how do we cope until then,while we watch our love ones fade away, all the time trying to apply all the right elements to their life and ours hoping to god we don’t inherit this dreadful killer.

My Dad chose to live with me rather than enter a care home when he couldn’t look after himself. The vascular dementia was stealing his memory and interrupting signals from his brain which prevented him from walking proficiently and causing him to fall often.

He needed 24hr care to help him wash, dress, to eat, and hydrate himself.

All of these disabilities arrived within a year.

Spending all day every day with someone that has dementia can be exhausting, catching them before they fall, convincing them it might be best to try to go the toilet while they have time to get there. Repeating the time and which day it is every five minutes, coaxing them inside when they just want to walk to the shop.

Compassion and empathy not sympathy, patience and a resolution that this disease will only get worse.

With all those things in mind, I had to ask myself, can I keep encouraging him to keep mobile?

That’s an easy task when you know the skills required to mobilise have been forgotten, unlearned, and this is only going to get worse.

Eating a meal requires concentration and coordination, transferring food from plate to mouth.

These basic skills we take for granted.

So, we have to think about quality of life without being able to walk, communicate, make decisions, everything that makes life worth living.

It is true in the case of my Dad, that it appears that he doesn’t remember anything, past or present.

This brings me to the bookcase analogy, (look it up).

The vital information I have taken from this is that a Memory is made up of hundreds of details, you have the initial memory in 2d and then you have other details like emotions,and other more complex data.Thats just one memory!

The analogy suggests that the one thing that stays intact are the emotions attached to a certain memory, this I have found groundbreaking because if I approach my dad in a way that induces the emotion attached to a certain memory, I can actually see the spark, the enjoyment spread across his face.

For example :

If I was to ask him to recall his Mum, he would give an empty , confused smile.

But if I was to say… Hey Dad I was thinking about making some cakes like the one Nan, your Mum used to make, I loved being in the kitchen with Nan, all those lovely cooking smells. Now, my Dad would react, you can see a genuine memory affecting his expression. Then of course I follow it up with the real thing to really bring the memory alive.

i can apply this to any memory that I’m aware of, therefore indulging his emotions and really communicating.

Visual pictures, aromas, smells, textures, these are all capable of reigniting some form of memories, although I’m working on garage smells, ( my dad spent his life around cars).

The one thing I’m stuck on is mobility.

It is getting increasingly difficult to move him around, although we are now probably looking toward the hoisting method, but we have little room and Dad is stuck upstairs.

Dad also has a problem sitting still in a chair( I think I would too).

He has this determination to slide off the seat with leg and upper body propulsion that defies all reasoning. These movements are it seems connected to the need to go to the loo, this doesn’t actually mean he needs to go, it’s what’s left of his control over his own body. The confusion and memory loss doesn’t stop him from his automatic requirement to save him from soiling his underwear. This is where things get difficult. It isn’t practical to sit him on the loo every five minutes, especially when you’ve got him there he instantly tries to get off. He won’t necessarily ask to go and he won’t admit that he needs to go, so if no action is taken he will proceed to remove his clothes as this seems the only option left open to him. I’m left scratching my head concerning the communication skill to deal with this.

When in bed however he is in his element and totally independent, happy to be able to move and do what comes naturally with very little interference.

I have a monitor set up so I can observe if he is getting close to falling from the bed.

His time in bed is spent walking his legs up the wall, window or swinging them over the edge of the bed. He uses the curtains like gym ropes, he also likes to twist them beyond recognition then to watch them untwist on their own, he throws them and catches them on their return swing, he covers his head in them while he snoozes.

keeping him in bed feels wrong, but in the other hand he gets better exercise and has much more control over his movements.

This is a work in progress and I apologise for any factual mistakes but I’ve never purported to be an expert.

V bomb factory ww11

via Forest

Whilst living in a little corner of rural northern France, we were compelled to investigate our new surroundings.
Just outside a small village named La Bleu Mason was a Forest, where there were notices explaining the dangers of the wild boar and illegal truffle poaching.
I was terrified and strangely excited at the prospect of meeting a wild boar but my husband thought it best to stay on the outer edges of this beautiful wooded landscape, initially anyway.
We happened on an area of overgrown vines and undergrowth almost swallowing a chain link fence border, looking over the fence we could see an army vehicle practically buried in the forna.
With our curiosity heightened we gingerly scrabbled over the fence, ignoring the keep out! Private property! Signs.(well we couldn’t speak French yet, hmmm).
The vehicle was definitely an American staff car of sorts,we could also hear in the distance a war siren and tannoy alerts. We thought we had been transported back in time, it was eerie beyond belief.
We wandered down a track toward the sounds, half expecting to be arrested or even worse, shot! We arrived at a huge bunker that was obviously a museum, we saw half a dozen frothy mouthed Dobermans in a pen, and some visitors on a tour, more notably and deeply moving we came to a halt in front of a large stone column mossy with age, engraved in the memorial were the names of war prisoners, mostly polish and Italians, that laboured and perished for the German war machine. The bunker, hidden so well in the French countryside was to launch the v bombs over Britain.

Always a Rebel

parents always like to tell the most embarrassing stories about their children.

Mine liked to constantly remind me and anyone that would listen, of my rebellious nature through embellished stories.

like , when I was a toddler, if I was asked to sit, I would stand! Or vice Versa. If I was told to stay I would move, if only an inch. On a day referring to this impulsive need to do the opposite, I was told not to sit on my favourite site, the doorstep. Of course I sat on the step pleased as punch that I’d foiled the parent again! Until….. I felt a pain in my bum, I shot up from my seat, propelling myself forward and onto the small picket fence surrounding the flower bed which embedded into my forehead which then spouted blood when my Mother lifted me off, setting off my mother’s blood phobia causing her to feel dizzy and faint! Luckily the neighbour heard the screaming and jumped over the fence to save us. I found out later that the pain in my bum was from a bee that my Mother was going to move before I sat down. There are many stories of this nature and I’m sad to say I still have the impulse to go against the grain, but it does provide plenty of party material for my family.

Somewhere over the rainbow

My daughter is 15 and suffers with severe anxiety, social awkwardness and anxiety attacks, depression.

Symptoms: health and security worries, depression, isolation, recurrent illnesses. Thoughts of self harm and fleeting suicidal thoughts.

Treatment Available: six week mindfulness therapy.

School councillor 1/2 hr per week.

Reduced school timetable.

Cahms referral. Refused as non serious.

Self help: journals, music, creative writing, Art, self-help groups, talking openly with family members.

15 yr study.

As a baby: no problems.

As a toddler: tantrums, diet problems, food control.

Creative, excellent vocabulary, excellent learning skills.

Playgroup: No problems.

Primary school: Starting to show signs of being unhappy, academically good, friendship problems

High School. First 4 years, Academically good, friendship problems, isolation.

Year 10, severe anxiety, isolation,depression, high absence record, stress related illnesses.

As a parent I have encouraged my daughter to keep going to school, where in truth she has suffered and her mental health is now in danger of being a lifelong problem for her.

If I look at my 15 year analysis, the problems were quite clear in primary school and my dismissed worries may have been important to my daughters health and well being today.

My daughter was a normal little girl with a hungry enthusiasm for education, music and art, but she didn’t fit in. Following tradition we carried on, forcing her to go to school thinking it would get better. Instead we watched our lovely talented daughter being oppressed, forgotten and brushed under the carpet, by the very institution that should have highlighted her best points as well as her bad.

I look at her now and feel sad that I didn’t do something.

At primary school she learned to hate herself, think of herself as stupid worthless and ugly.

She is in fact none of these things.

What child is?

This is where I think that teachers of early years children should be educated to spot the obvious signs that lead to mental health problems.

The school environment should be a safe place, no judgements, no politics. In my experience I have witnessed teachers becoming embroiled within the social scene of parent cliques that determine the popular groups of children in school, which consciously or not affect the dynamics of friendship groups within the school. Most children can overcome this barrier but there are some that just can’t, it’s those children that become lost and isolated.

My intention in this blog is to follow my daughters progress, the good and the bad,and along the way maybe help others like her.