I care...

A short post, to express my feelings, and possibly those of others...

I care...

I cry - because I'm lonely,
I cry - for the life I've lost.
No-one sees my tears,
No-one shares my loss.
I care - because I want to,
I care - yet no-one knows.
This world will keep on turning,
My world is now on hold.
I care - because I choose to,
I care - because I love.

Dementia, music and emotions.

Music

It is already a well understood fact, that music helps those living with dementia. The brain and the parts of the brain involved, respond to music in a different way from normal conversation. Someone with dementia may have difficulty communicating, and expressing themselves using words, but music, can have a very dramatic effect. A different part of the brain is involved when listening to, and singing along with, music. Words that may have been forgotten in conversation re-appear, when singing. Lyrics to songs, are stored somewhere else.

Lyrics are in the form of a structured word pattern - just like poetry, which can also work. Such word patterns are stored in a different part of the brain from words used in conversation.

Music can have a calming effect - it can also be exciting, resulting in animated responses, smiles and even laughter.

Music can be used, very successfully, as a stimulus for those with dementia. It can trigger memories from the past. It can also stimulate other parts of the brain to help them remember.

Mum loves listening to music, especially music from her past. However, she also loves more recent recordings, such as Andre Rieu concerts, yet these also hark back to her past. Listening to, and watching such concerts, brings great pleasure and happiness. She becomes much more animated, singing along, clapping and “conducting”.

Notably, these concerts are watched, when broadcast on TV, or when there’s nothing else to watch - on DVD, on a very regular basis.

Music is a therapy in itself.

Emotions

Emotions, triggered by objects or events, including listening to music, can have a similar effect. When Mum is angry, she can be incredibly lucid, using words that she wouldn’t normally use, and may not be able to recall at other times. Her anger can  be triggered by something on TV, she’ll start shouting at it, or more accurately, at the people on TV who triggered her anger in the first place.

Like the recall of song lyrics, emotions are controlled by a different part of the brain, a part that may not be as badly affected by Alzheimer’s or dementia. This may trigger memories of past events or reactions, and help them recall words, which under other circumstances appear lost forever.

Sometimes, if I get upset, Mum’s nurturing instinct comes to the fore, and once again she becomes more lucid, more caring, and more concerned.

Far too often, negative emotions are ignored, not in a caring sense, but in finding a way to promote a more positive, happier, response. If someone with dementia is upset, a gentle hug and talking may help to some extent, but what else can be done to help them?

With many forms of dementia, logic seems to go first, but emotions remain for a far greater length of time. Dementia is, in many ways, a regressive condition. Those with it regress to a more “childlike” state, yet they are not children. They are adults! Adults who should be respected as such.

However, there are many products designed for children, that can prove useful and helpful to those with dementia. The fact that many toys are brightly coloured helps. As we get older, our eyesight diminishes, and colour perception is reduced, bright and contrasting colours help to alleviate the effects of this deterioration. No one person is the same, and this is equally true of those with dementia, so experimentation is necessary.

I’ve tried numerous different toys and products with Mum, from colouring books to building blocks, from cuddly toys to dolls. As highlighted in an earlier post, a realistic baby doll has worked best for her.

Whatever works with the person concerned, the item or event can bring an almost immediate change in emotion, and attentiveness. An otherwise silent and non-interactive person may start to react to others, start talking, and become more animated. Their mood can change almost instantly.

Emotion, whether happy or sad, can be triggered by a variety of events and objects. Those of us who care for someone with dementia always strive to try to keep them feeling happy, loved and safe. Through experimentation, we can discover what makes them happy, and how to maintain positive emotional responses. Any form of stimulus, visual, aural, tactile or smell, that triggers a positive response can only be good.

Music is just one of the many stimuli we can use. For a large number of people with dementia, it appears to work. Knowing the genre and period of music they like, is an invaluable resource when trying to maintain a level of mental alertness and a positive emotional state.

Music calms, music comforts, music excites - music is an invaluable stimulus for those living with dementia.

Dementia – caring for Mom – dark thoughts – and beyond...

Once, I had friends. Once, I had a life I could call my own. Now? I have nothing. Of my friends, all but one, have gone. Life is lonely.

My family is now so unhelpful, that they recruit a non-blood relative, to act as intermediary in any disputes! Cowards!

Do I feel bitter? Yes! Yet, what I do – I do for love! I love Mom with all my heart, and her dementia makes that harder still. Sometimes she doesn't realize, that everything I do, is because I love her.

I spend most of my time in this prison, we call home. Sometimes, I want to scream – sometimes, I want to cry - sometimes, I want to run away - sometimes, my anger is greater still. Yet, there is something stronger.

Something, that quietly says – “everything you're doing is right”. I know this! Yet I still yearn for the life I had before. I also know, that one day - sooner, or later - my former life will resume. Mom's won't!

A feeling of guilt often overwhelms me. Am I being selfish? No! Yet, it feels that way! I want to do all the things I did before – and, in all probability, I will – Mom won't!

The reality of dementia is – Mom's life has changed forever – in the shorter term, so has mine, but not forever. Soon, how soon? I don't know – but my life will resume. Once again, Mom's won't!

Until that inevitable day, I have made it my duty, come rain, or come shire, to be there for Mom. Regardless of all the trials and tribulations, that may befall us.

Dementia destroys! Not just the person with dementia, but all of those who care – these are the ones who also lose the friendships and relationships, they had before.

Dementia doesn't just steal from one, it steals from all it touches!

Why, in God's name, was such an evil disease, ever created?

Dementia and Doll Therapy - Mum and her new doll

This small insight is based on my own experience helping my Mum, who has vascular dementia.

Mum has had cuddly toys for many years, for the most part, they were generally consigned to a shelf in her wardrobe. However, since being diagnosed with vascular dementia, such toys have played a more important role in her life.

The importance of these toys became very apparent during her most recent stay in hospital. I took her a number of toys just after she was first admitted, her face lit up when she saw them. They stayed with her, throughout her three week stay, and became her little companions. She would hold and cuddle them, kiss them, and talk to them.

Her favourite, of all things, was a small splash ball, in the shape of a pink and yellow octopus, complete with stumpy tentacles and a very stylised smiley face. “Ollie” as he was known, was her “little friend”. To Mum, he was small and vulnerable, and would often “disappear”, either somewhere in her bed, or occasionally on the floor. Virtually every visit began with a search for “Ollie”, accompanied by calls of “Ollie! Ollie! Where are you Ollie?”.

When found, and given back to Mum, she would kiss him and talk to him.

Ollie

After Mum returned home, now predominantly bed-bound, I acquired further toys, using them as experiments, to see how Mum would react. “Ollie”, however, has remained a firm favourite.

I tried a variety of cuddly toys, and whilst these were accepted, they didn't quite attract the same attention as “Ollie”. I then tried a couple of highly stylised soft baby dolls. These worked well, and along with “Ollie”, became favourites. As did a small, again highly stylised dog in a bag. These became her babies!

These toys all worked well, until just a few days ago, whilst shopping in my local supermarket, I spotted another, very realistic, baby doll. This particular doll is from JC Toys, and designed by Salvador Berenguer. As soon as Mum saw this doll, that was it! Her full nurturing instinct came to the fore. This doll, as far as she was concerned, was a “real” baby. A baby to be loved, to be protected, to be nurtured.

Mum, Charlie and Ollie

Mum has only had the “baby” for a couple of days, and it has already made a difference. She cradles it, talks to it, and gives it kisses and cuddles. Last night, she even, quite unsuccessfully, tried to feed it some of her ice cream!

It's early days yet, but this new “baby” certainly seems to be working. Mum is thinking about possible names, and has already suggested that she might name him “Charlie” after my late Dad.

“Charlie” came with very little clothing, as he was packaged as a “bath doll”, needless to say, clothing has now been ordered. In the meantime, he is wearing an all in one bodysuit, designed for tiny babies. It's a little large for a 14” doll, but will suffice for the time being.

I'll be posting more on this subject, as I find out more about the way Mum interacts with “Charlie”, and how he is helping her live with dementia.

As I finish this post, “Charlie” is with Mum, cradled in her right arm.

Dementia and disabilities – awareness has a long way to go!

Now that the weather here in the UK is warm and sunny, I've been able to take Mum (minimal mobility and dementia) out in her wheelchair. The experience, for both of us, has not always been good.

Cars blocking road side pathway drops, forcing the wheelchair user into the road, in order to find a suitable place to remount the path. Fortunately, on one occasion, when we encountered this, there was a very kind and understanding lady who offered to help lift the wheelchair back on to the path. Fortunately, not everyone is inconsiderate.

When pushing the wheelchair towards oncoming pedestrians, they more often than not, move to the inside of the path, forcing the wheelchair closer to the edge. If the path is narrow, this could cause a wheel to slip over the edge, with the added potential of the wheelchair toppling over, and depositing its occupant on the road.

So how do others view an elderly person in a wheelchair?

Some will provide space and allow the wheelchair to pass, others will invariably cause an obstruction. Their impatience results in them rushing towards a bottleneck, in order to get through first, with no consideration for the person in the wheelchair, or indeed their attendant. Forcing them to wait, until the way is clear.

As mentioned before, car drivers appear to be the most inconsiderate. They will park their vehicle and block access points. They will ignore a wheelchair attempting to cross the road. Every driver who has an issue with cyclists, appears to have an even greater issue with wheelchairs. Wheelchairs are a complete inconvenience – let's get past this crossing point before the wheelchair, otherwise we might have to wait a little longer. The wheelchair user, and attendant, is forced to wait for a suitable gap in the traffic, before attempting to cross

I must point out, that where we live, has a higher than average number of wheelchair users. So, in what should be a wheelchair friendly community, these problems still exist.

So called friends

A few months ago, someone I used to work with, and would have considered a friend, came to visit Mum. I think, from her reaction, she was shocked by the fact that Mum was no longer mobile. She'd invited us to a barbecue the previous year when Mum was still mobile. She did say, when visiting, that she'd invite us to her next barbecue. That barbecue happened on the weekend just gone – did we get an invite? No!

Pet hate – disabled access

I find it completely unacceptable that companies and organisations think it right to display, at their front entrance, that disabled access is via another entrance to the building. If able-bodied people can enter through the front door, then this access should be available to wheelchair users. “Disabled access via Car Park” or “Disabled access to the rear” is just not acceptable. This discriminates – and such discrimination should not be allowed.

Positives

Not everything encountered is negative, and in fact the positives make the negatives pale into insignificance. A great example was, when in the local supermarket, at the checkout, the woman at the till – who herself has a hearing disability – spoke to Mum, welcomed her, and asked how she was. The following day, when I went shopping on my own, the same woman remembered me and Mum, and asked after her. That's how it should be.

Society clearly has a long way to go before the disabled, elderly and infirm, are treated with the respect they deserve. We're quite happy for them to win golds at the Paralympics, but we're not yet ready for them to be fully integrated into everyday society.

My extended family includes people who have severe learning difficulties, and one with motor neurone disease. My Uncle died as a result of Alzheimer's, and my Mum has vascular dementia.