My Alzheimer's and Inspirational stimuli - Visual Art appreciation.

Visual art can provide meaning to what many with dementia experience as an ever increasingly meaningless life. In my opinion, art connects people to their culture and to their community. It gives meaning to life after diagnosis and it's meaning and stimulus that people living with Alzheimer's like me so dearly crave. I enjoy the simple visual pleasure of art appreciation, having failed miserably due to arthritis, at the physical taking part by trying to improve my practical skills of sketching and painting. 

As a child I used to frequent the local Museum's and Art Galleries at week-ends.We were very fortunate in that the City where we lived, had a marvellous inherited collection of world famous works.Viewing these collections sowed the seeds of my appreciation,I was in awe of the beauty and craft that was on show.One painting in particular had a profound effect on me as a child,I never tired of standing, sometimes for long periods of time and being lost in that painting. It was Salvador Dali's 'The Christ of St John of the Cross'. As a child of seven the religious significance of the picture was lost to me, it was purely the realistic panoramic effect of a man suspended in the sky overlooking the world.Magical.

Since my diagnosis I have taken advantage of the new computer technology of the Internet and it's potential for viewing wonderful pieces of art from all over the world. I appreciate that the ambience of a museum or gallery is missing when surfing art examples on the web. However there are myriad styles to help stimulate the mind's various moods and emotions in the interpretation of the visual senses triggered. Art reveals to us the essence of things,the essence of our existence. I also find comfort in viewing certain art works.Many I find calming when I am feeling agitated,afraid or anxious. I find it very theraputic and hope that I can continue to benefit from these marvellous visual experiences,even into the latter stages of my inevitable cognitive decline .

"Think of me my friends, forget me not"

Over the years I have enjoyed reading poetry but have never really got up the courage to attempt having a go, until now! I humbly submit my first attempt, it is called "Think of me my friends, forget me not". The inspiration was from my wife's garden and her beautiful little blue Myosotis flowers (Forget me not's) seemed appropriate! I hope the Blog followers enjoy it.



"Think of me my friends, forget me not"

Forget me not when I am dead and gone,
having lived my life, loved laughed and won,
with these words the years  flew by,
laugh with me, forget me not,
now with Alzheimer's I will pass by,
having lived, loved laughed and won,
always remember my friends, forget me not.

the final appointment with death one day soon,
my pain and terror thankfully vanquished forever,
forget me not when I am dead and long gone,
demented stigma no longer cast,
having gratefully lived,loved laughed and won,
now at peace with my mortality at long last,
think of me my friends and forget me not.

The Pilgrim's progress

The Pilgrim's progress - from this world

         to that which is to come.

The first few weeks after my diagnosis, the emotional impact of having been told that I had Alzheimer’s disease, was so powerful for me that it became the main focus of my life. I took the decision that my previous lifestyle and expectation was now gone and that It now required a complete re-evaluation.

I have previously referred to this disease as “the long good-bye,” during which a person with Alzheimer’s gradually moves away toward a land into which friends and family cannot follow. 

This now leads me to speculate on my own personal beliefs on mortality and the essence of spirituality, having previously held an agnostic viewpoint on religion and faith.That is not to say that I never stopped wondering and tended to keep an open mind.The unknown invites you to question and search for the meaning of life, in the past, present and future.When we are seriously ill, we tend to get caught up in statistics and averages; How soon will the illness progress? How long do I have left? These can be helpful to know, but they don’t always provide spiritual and emotional comfort.

Since my confirmed diagnoses I find as I look inward that I am starting to re-evaluate my position. I suspect that this is a natural reaction when faced with one's own mortality when it comes into focus. Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears and hopes. Illness establishes new directions and often causes some questioning of old directions. New thoughts, feelings and action patterns will emerge. 

These are the kind of things we might discuss with one another at any time, any day, as we live our lives, but most of us don’t; it’s almost taboo,  at least among men. So often we wait until the person is close to death or, more often, perhaps, until the memorial service, before we dare articulate these human feelings and the possibility of spiritual belief for comfort. Even with the certainty that you will die from this illness, you can find hope in your tomorrows, your next visit from someone loved, your spirituality. At bottom, hope means finding meaning in life, whether that life will last five more days, five more months or five years.If faith is part of your life, express it in ways that seem appropriate to you. You may find comfort and hope in reading spiritual texts, attending religious services or prayingIt must be comforting  to be around people who can understand and support your religious and spiritual beliefs. Comforting to find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.you don’t have to depend on anyone else. But confronting a terminal illness cannot and should not be done alone. As difficult as it may be,I believe that we must reach out to our fellow human beings. Most of us know whom we feel comfortable turning to when we are under stress. I would dearly love to have a spiritual mentor to help me face what I know is ahead,however the reality is I have never attended any church or religious groups in my later years.

I remember well some years back, visiting a Benedictine Priory on a day visit. It left a very lasting impression on me which made me start to question my own beliefs.The place was an amazing mixture of calm, peace and strong vibes of love and understanding. In complete contrast to the modernity which surrounded it. I have often thought of going into a retreat there to try and come to terms with my inner thoughts. As an Alzheimer's Pilgrim I am now on a personal spiritual journey to help me find an inner peace to arm me for the battle ahead.I realise that perception and failing mental abilities will impact on  
these preparations, however I will fight this to the end.

Whatever I do, I will not isolate myself and withdraw from the people that love me.

Evolution

People with Alzheimer's may have personality changes, such as poor impulse control and judgment, distrust, increased stubbornness, and restlessness.

I have undergone all of the above in the last year or so.

Impulsive behaviour and poor judgement has resulted in my wife taking control of my finances and in particular my credit cards. I have had to curtail impulse buying on line as I have been told that it was becoming obsessive.One good thing to come of it is that my very good friend the postman, now has a quieter time, with far fewer deliveries of strange large parcels and packages !!

I was starting to mistrust my wife with my allowances and pension money.As she explained to me she was not diverting it to buy new shoes and clothing for herself. Anyway none of it would have fitted me !! I am now on a par with Royalty in  that I do not carry any money on my person now!

Each week my wife takes me and a family friend,who  also happens to be an Alzheimer Pilgrim,out for trips in the car. These journeys are tailored to our special needs for distance ,feeding stops and toilet facilities. Which in my case can be a frequent and necessary requirement!! On one of these outings my wife had decided to go somewhere different and necessitated a slightly longer journey.I took exception to this and ruined the day by being moody and expressing my anger by being out of my comfort zone of familiarity.

I find that I have a much shorter attention span and can become restless after 20 to 40 minutes of reading a book or typing on the computer. Even jumping between both activities ,which I now describe as Alzheimer multi tasking! a recipe for disaster in continuity!!

s.

A journey into darkness

A journey into darkness

Having been diagnosed with Alzheimer's, it is difficult not to think of what the next few years has in store for me in terms of my illness,particularly the later stages.

Alzheimer’s last stages of which are shrouded in mystery, each of us with this disease will be exploring an unknown wilderness.Ultimately,will I be able to tell others what the last stages are like?   I wonder whether I’ll be conscious toward the end when I appear to be completely out of it and, if not, what it will be like.We just don’t know.  

In trying to second guess what  my journey into the darkness might be like  might seem like a form of denial,soft-peddling the likelihood of future suffering for me and the people close to me.  I don’t believe I’m in denial, but even if I were, does that change the reality that this process will be some sort of adventure? 

Perhaps we don’t think of Alzheimer’s as an adventure because we want happy endings and believe that the word adventure applies only to successful adventures, where the hero faces enormous dangers and suffering but eventually returns to tell the exciting story.  But what if the hero does not return.  

It sounds strange, as well as trepidation, I can still sense an excitement.  Growing up, I relished exploring uncharted territory.  But each of us with this disease must explore it for the first time; each of us faces a unique adventure.Knowing that we will never return.

Looking on the bright side of life

I honestly wish that my sense of humour stays with me to the end of life, I would miss it dearly should it fade, it shines a light that others fail to reach. It is both my sword and shield in fending off anxiety and depression.

I surf many blogs and forums of interest in attempting to expand my knowledge of this dreaded disease. Many personal to those with the disease are inspirational,others harrowing and indicative of individual experience of this accursed affliction of Dementia in it's various forms.

As someone with a diagnosis of Alzheimer’s disease, I can still identify with the joy that people feel in the sheer living experience and being involved with the day to day expectations of maximising it, despite cognitive decline due to the condition in it's various forms.

I recognise that while there is great sadness in losing one’s cognitive abilities, family members and caregivers can still share a wealth of love and moments of great joy and laughter with those people living with dementia.

I hope that our view of Alzheimer’s can through humour and laughter, shift from “the long goodbye” to “the long hello.”

These posts and their humorous content, are not intended to be flippant or disrespectful of the seriousness of the AD condition, but are intended to shine a light into the dark private places that can be depression and anxiety.

Providing occasions for humour, laughter, and the celebration of life, in my humble opinion is another weapon in our armament for helping to improve the quality of life for those who have the disease in it's various forms, including that of their carers and family.

Laughter and humour help you stay emotionally healthy.It makes you feel good. And the good feeling that you get when you laugh remains with you even after the laughter subsides. Humour helps you keep a positive, optimistic outlook through difficult situations, disappointments, and loss.

More than just a respite from sadness and pain, laughter gives you the courage and strength to find new sources of meaning and hope. Even in the most difficult of times, a laugh–or even simply a smile–can go a long way toward making you feel better. And laughter really is contagious—just hearing laughter primes your brain and readies you to smile and join in the fun.

Laughter dissolves distressing emotions.You cannot feel anxious,angry,or sad when you are laughing.It also reduces stress and increases energy,enabling you to stay focused and achieve more.

Humour shifts perspective,allowing you to see situations in a more realistic,less threatening light. A humorous perspective creates psychological distance,which can help you avoid feeling overwhelmed.

One essential characteristic that helps us laugh is not taking ourselves too seriously. We’ve all known the classic tight-jawed sourpuss who takes everything with deathly seriousness and never laughs at anything. No fun there!

Some events are clearly sad and not occasions for laughter. But most events in life don’t carry an overwhelming sense of either sadness or delight. They fall into the grey zone of ordinary life–giving you the choice to laugh or not.Having a good laugh with friends really does help us to deal with pain, suggests a new study. The international research team, led by Oxford University, found that when we laugh properly, as opposed to producing a polite titter, the physical exertion leaves us exhausted and thereby triggers the release of protective endorphins. These endorphins, one of the complex neuropeptide chemicals produced in the brain, manage pain and promote feelings of well being. According to the team’s research paper, published online in Proceedings of the Royal Society B, watching just 15 minutes of comedy with others increased the pain threshold by an average of about ten per cent.

"Sometimes I laugh so hard the tears run down my leg". 

Considering - 'To be or not to be'

I passionately believe that people who have a hugely debilitating and ultimately fatal illness should be able to make the decision to end their lives when they wish, rather than suffer. It is my life,it will be my death and it should be my decision.

Of course here in the UK, there needs to be some legal framework or regulations that can judge me to be of sound mind when I make this choice, and ensuring that I have not being coerced. 

While not an easy subject to discuss, Euthanasia and physician assisted suicide, it is a very important one in the face of a terrifying bleak outlook. It is my sincere hope that the Law will eventually change to accommodate people who are facing such situations,not just for their own sakes but also for the families and those who are caring for them.

Ethical problems of euthanasia

Does an individual who has no hope of recovery have the right to decide how and when to end their life?

Why euthanasia should be allowed

Those in favour of euthanasia argue that a civilised society should allow people to die in dignity and without pain, and should allow others to help them do so if they cannot manage it on their own.

They say that our bodies are our own, and we should be allowed to do what we want with them. So it's wrong to make anyone live longer than they want. In fact making people go on living when they don't want to violates their personal freedom and human rights.It's immoral, they say to force people to continue living in suffering and pain.

They add that as suicide is not a crime, euthanasia should not be a crime.

Why euthanasia should be forbidden

Religious opponents of euthanasia believe that life is given by God, and only God should decide when to end it.

Other opponents fear that if euthanasia was made legal, the laws regulating it would be abused, and people would be killed who didn't really want to die.

The legal position

Euthanasia is illegal in most countries, although doctors do sometimes carry out euthanasia even where it is illegal.

Euthanasia is illegal in Britain. To kill another person deliberately is murder or manslaughter, even if the other person asks you to kill them. Anyone doing so could potentially face 14 yearsin prison.

Under the 1961 Suicide Act, it is also a criminal offence in Britain, punishable by 14 years' imprisonment, to assist, aid or counsel somebody in relation to taking their own life.

Nevertheless, the authorities may decide not to prosecute in cases of euthanasia after taking into account the circumstances of the death.

In September 2009 the Director of Public Prosecutions was forced by an appeal to the House of Lords to make public the criteria that influence whether a person is prosecuted. The factors put a large emphasis on the suspect knowing the person who died and on the death being a one-off occurrence in order to avoid a prosecution.

(Legal position stated at September 2009)

Changing attitudes

The Times (24 January 2007) reported that, according to the 2007 British Social Attitudes survey, 80% of the public said they wanted the law changed to give terminally ill patients the right to die with a doctor's help.

In the same survey, 45% supported giving patients with non-terminal illnesses the option of euthanasia. "A majority" was opposed to relatives being involved in a patient's death.