View From The Other Side

FROM MICHAEL:

This came as a "second or third hand me down" but is important enough to share here with you.

A new friend, Susan Macaulay who blogs from Canada about her mom and their journey with Alzheimer's http://myalzheimersstory.com introduced me to Kate Swaffer, who blogs from Australia,  http://kateswaffer.com with a bio of: Mother, Daughter, Wife, Friend. Poet, Blogger, Author, Speaker and Chef. BPsych, BA Writing and Creative Communication, Grad Dip in Grief Counselling, Nurse. Advocate and activist for aged and dementia care.

Kate is a person diagnosed with dementia so her perspective is a very needed look at that side of the disease. Gregory was never really able to talk to me about what he was going through as the Alzheimer's put up a buffer between what was real and how he experienced it. Most of what I know about Gregory's experiences are based on watching him change and on our 40+ years of knowing and loving each other. 

Kate now introduces us to Masahika Sato from Japan who recently published a book on his dealing with and views about having dementia.

Many of us dealing with Alzheimer's and other dementias as caregivers do not get this very valuable chance to see what it is like from the other side. I admire both Kate and Masahiko on their insight and positive outlook.

FROM KATE:

Thanks to a friend who I met at ADI2012 in London, Kumiko Magome from Japan, who shared this with me, and for Masahiko Sato for giving me permission to publish it here.

I am deeply honoured to be able to announce on my blog this information from a colleague in Japan, Masahiko Sato, including details about his book on living with dementia.

Thank you Masahiko Sato for sharing your personal thoughts and wisdom on living well with a diagnosis of dementia. I hope one day I am privileged enough to meet you in person. My most sincere and heartiest congratulations to Masahiko on becoming published, in spite of a diagnosis of dementia

FROM MICHAEL:

Kate used a translation of the text done by a group of volunteers, and as she cannot read or write in Japanese does not guarantee the total accuracy of the translation but I think it speaks for itself as mostly accurate. I have omitted the Japanese here and included only the translations.

What I Want to Tell You as a Person with Dementia, by Masahiko Sato

English: Ohtsuki Shoten: Tokyo, 2014.

Even though I have dementia, the many things I can no longer do are also accompanied by many things I can do.

Having dementia has led to more inconveniences, but this does not necessarily mean I am unhappy.

Even though I have dementia, I have introduced ways to be creative in my lifestyle without giving in to despair and continue living with hope.

Even though I have dementia, I have not given up on living.

Even people diagnosed with dementia may find themselves believing the distorted views of others about this illness, and end up robbed of their will to live. I want to find ways to eliminate these distortions.

It is particularly when people develop dementia that they should do the things they like without giving any mind to others.

I want people to overcome inconveniences and make adjustments to maintain zest in their own lifestyles and lead more complete lives.

I want others to look at my way of living as a positive example, in their search to find their own way of living so that they live the rest of their lives without regrets.

What I want to convey to you is the fact that I have learned many new things ever since I developed dementia.

You should neither count what you can no longer do nor lament their loss. Instead, I hope you would instead believe in what you are still capable of and live your lives to the fullest.

Even if you have dementia, I hope you lead your live without giving in to it.

When trying something new, don’t think you cannot do it even before you start. First, give it a try without getting too stressed about it.

It is not true that people with dementia can’t think for themselves. I want you to know that people with dementia can lead spiritually fulfilling lives.

People with dementia are not simply people who need to be taken care of. We want others to identify as other members of society, too, as we all weave the fabric of society.

I hope you do not compare yourself with others but instead see your existence itself as precious and life as valuable, despite any inabilities you may have.

Although you may face terrible ordeals, I want you to live your lives believing you will find a way through them.

Don’t let the challenges ahead rob you of your will. I hope you try to live with a positive attitude.

I want to present myself as an example of a good lifestyle led with a PC and mobile phone, which have helped me get past inconveniences in life.

I want people with dementia to use my way of living as an example to help them to go forward with hope in their own lives.

Before my dementia progresses any further, I want to create many pleasant memories and enjoy life, such as by traveling, going to concerts, and watching plays.

I hope to contribute to society by participating in volunteer activities. I want others to understand that people with dementia are not a burden on society.

The important thing is to live one’s life with a sense of gratitude by considering each day a gift and imagining today will be the last day I am blessed with life.

Author: Masahiko Sato, Copyright 2015, Japan.