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Michael Hagedorn
Facing Dementia – A New Approach
Dementia is a rapidly growing social challenge in almost all societies of the world. For most of us who are not directly involved, dementia seems to be synonymous with a uniform regression of mental abilities and a rapid loss of quality of life.
But quite contrary to this typical misconception, which is constantly being nurtured by undifferentiated and stereotypical media reports, dementia is not dementia. Aside from the fact that there are a number of different medical forms of dementia, the most common of which is Alzheimer’s disease, it should no longer be ignored that every person affected develops his/her own and very personal form of dementia and his/her very distinct way of dealing with the limitations and changes resulting from it.
During the time that I have spent photographing in retirement homes and private homes all over Germany I have met many people affected with dementia who not only enjoy life to the same extent as they did before or even more; moreover I have met people who only after their diagnosis of dementia discovered talents formerly unknown, such as Werner Leypoldt who practically has not stopped making art work for years. And due to a vanishing consciousness of societal norms and rules many people with dementia enjoy personal freedom never experienced before.
Every human being is destined to personally be affected by dementia – provided we will be getting old enough and depending on some kind of individual biological clock. Some people start developing symptoms of dementia as early as in their thirties, while others live to an age of 100 years or older without showing any significant signs of mental regression.
We still do not know what physiological mechanisms may cause or boost dementia. There are many question marks, but more important than the academic side of this subject, is to rid it from its societal stigma and to give back dignity to those people involved. This project which is overdue is aiming at raising people´s awareness for one of the most important social challenges we are facing – worldwide.
This long term photographic project has grown to becoming the largest visual documentation on dementia ever.
A lot of the photographs have become part of the awareness campaign “Konfetti im Kopf” (“Confetti in the Head”), that I initiated, and that travels through Germany and other countries.
Bio
Michael works for magazines and in advertising, now specializing almost exclusively in dementia and related disorders and phenomena.
His work has been exhibited in numerous single and group exhibitions.
Awards and nominations include a nomination for World Press Photo Joop Swaart Masterclass in 1996; Fuji Euro Press Award, 1st Prize News, 1998; two grants of VG Bild-Kunst, Germany, in 2001 and 2005; Swiss Press Photographer of the year 2006, Gold Award; POYi-Nomination for Best Portfolio, 2007; Nikon Reportage Photography Grant, 2008, amongst various others.
Related links
Perhaps these lovely, bright, color photos reflect the life of those in Germany with dementia (although I doubt that), but this isn’t their fate in the U.S. Beyond the economics and politics of dementia, though, is the real impact on families. My father died of Alzheimer’s, and the several years it took for the disease to kill him was not colorful or creative or pleasant. Dealing with it destroyed my mothers health, and she died one month before he did.
The photos are certainly good enough, but in no way represent the reality of those living with, and caring for, dementia victims.
Jim, it is sad to learn about your dreadful experiences. It is the harsh reality you had to deal with, it is your reality, and to a large extent it reflects your attitude towards life and death, towards saying goodbye to people you love. I would like you to know that I write this without the slightest criticism. I´d rather sit down with you now and talk to you about what I have found in that universe that we call dementia over the last six years that I´ve been dealing with it. I then may want to hug you and tell you how sorry I am, and that I am sure you all did the best you could. But I´d also like to leave you a bit confused, maybe even slightly uneasy, that because you didn´t know about dementia well enough, because you have fallen victim to all these stereotypes and misconceptions and denegation, you may not have picked up signals you could have responded to make your father´s life more worth living, and thus your mother´s.
Yes, many people make dramatic experience related to a beloved one´s dementia. But there are just as many if not more who make pretty amazing experiences, like their family member or friend becoming a much more emotional person who they can connect to much easier than before; like people with dementia starting out making Art or music only after their diagnosis, and by doing so revealing more about their real personality than they ever did before, becoming more themselves than ever before; like families being able to reestablish relationships.
I have met many people who say that their mother/father was having a life well worth living despite or because of their dementia. Yes: because of dementia. You may find that unbearable to read, but I can only tell you from my perspective, and despite my perspective not being quite as personal as yours (one of my Grannys used to have Alzheimer´s, so does a close friend) I do not see any reason why it is less true.
The major factor for the impact of dementia “destroying” the lifes of caring relatives is that they don´t know of or don´t make use of offers from Alzheimer Societys or the likes, don´t take advantage of respite care etc.
Nobody dies of dementia, it´s another one of those terrible misconceptions and myths. Sooner or later other accompanying factors cause a person´s death, but it´s never dementia itself.
What I try to achieve with this huge piece of work is counter-balancing an issue of huge significance to so many people; to give hope in times of despair; to make people´s stories heard; to help destigmatize people with dementia. They don´t turn into empty shells, they don´t become idiots, they don´t lose the core of their personality – they are still there until their last heartbeat. And they teach us to look and listen closely. It´s a matter of attitude. And that´s why the colours are as vivid as I found them. Cheers, Michael
Wow. Powerful work. I appreciate the positive take on it as well. Nice to see an essay that points to the (hopeful) future of health care and not always wallow in what’s wrong or bleak. Kind of interesting that Jim couldn’t see this due to his own experiences as Jim is always lamenting the amount of dark and depressing essays on here and that there should be more positive ones. Goes to show that everybody’s experiences are different and there is room for work that approaches subjects from all angles. Would have been really easy to shoot this in b&w and focus on only the bleakest of bleak nursing homes. Then the photographer might have been criticized for being cliche and doing yet another “Magnum” style essay. Probably with Jim you couldn’t have won either way, but it’s nice that he initiated such a deep response from you. Aging, in all it’s myriad facets, is something we all have to deal with at some point, as both spectators and participants. My wifes’ parents are German and well, are starting to “lose it” a bit so this brings up many emotions for me.
I could be wrong, but if I remember well this is the first time I see work on this subject in colour.. to my mind comes work of Stefan Loeliger ( http://stefan-loeliger.com/ImageCategory.aspx?catID=19 ) and Thomas Liehr (his book ‘Imagines Dei – Ebenbilder), Eugene Richards ‘A Procession of Them’, Giovanni Santi ‘Tornare a Vivere’, Basaglia a Trieste.. all dealing in a way or another with the subject of mental illness, all in black and white..
Michael, you write about respite care.. I can imagine that it works well in countries like Germany, I know it does in Switzerland.. but I also know that down here in Italy you’re mostly on your own, it’s the family (if lucky it’s extended family) taking care of the one suffering.. and it can be tiring..
I do though agree with what you write in your last paragraph.. the hardest part I think is accepting.. You are doing important work with this, thank you :)
Hi Jim, Charles and Eva,
thanks for your comments, I really appreciate all of them. Answering a very personal, yet challenging comment like yours, Jim, is never done light-heartedly, easily, because I KNOW, how much many people suffer in dealing with this variety of challenges that we subsummize unter the term dementia. And I really thank you very much for starting this interesting discussion, for being so open.
I firmly believe we need a different approach in order to successfully being able to cope with a growing number of people with dementia almost everywhere in the world. Not from a societal point of view, but from a person-centred, loving point of view. Positive societal impacts will then follow suit. We need nothing short of a shift of paradigm, and that change starts with every single individual that tries to question her/his attitude, tries to look at the world through the “demented” person´s eyes; without expectations, without grief, without bewilderment, but with the open-mindedness of a child looking at the world for the first time. It´s not just a naive personal vision, the change is happening in more and more homes and care-homes. But we still got a long way to go.
I like this essay. I didn’t know that (some) Alzheimer-people like to try something new. I don’t have Alzheimer-people in my family or close friends, but had sort of horror regarding this desease. Until I visited two Alzheimer-communities in Hamburg and realised that it is not easy for people and their family members, but must not mean fulltime misery and sadness. It is nice to see the emphasis on the brighter side in these photos.
Very strong piece, Michael and very informative text and responses.
The light and bright approach to your piece is also interesting and, for varied reasons, not the
route I believe I would take.
Perhaps, as you mentioned to Jim, it is partially due to the stereotypical view many of us have
regarding dementia and Alzheimer’s.
A couple of years back I decided, after delaying for over a year, to document a friends aging
mother who was diagnosed with multiple types of dementia in combination with other degenerative
problems.
I spent an hour with the couple to see how she would react,etc and see if I were up to the ask.
A couple of images here ( http://marktomalty.com/blog/ ).
The woman was physically able, and still is, but would slip in and out of lucidity;flashing back to
childhood days in Germany before the war or confusing me with her son with whom I grew up,etc
From this i sort of had decided to take the ‘darker’ route as it somehow seemed more in tune with
her experience. Not negative but just dark.
Unfortunately, the next morning she had an accident at home and suffered crippling broken hips
and from that morning forward has been institutionalized and never set foot again in her house of
nearly sixty years.
The upside is that she has a strong family and friend network and, though institutionalized, is not
often alone.
I basically believe what you show in the pictures above and they are all quite excellent. They give me hope that if it comes to that point for me, in the end, I can receded into a pleasant state of mind.
My own personal experience so fa has not been so bright, and not because of stereotype, but I’ll leave it at that.
Thanks, Nana. What Hamburg are you talking about? Are we neighbours?
Strong pictures, Mark. I like numbers 1 & 2 best. Nr 2 & 3 work together well as a vertical diptych. Nr 1 is very interesting as, to me at least, it brings to our eyes all those invisible colours in a life without conventions, without rules, without limits really. And I don´t find your pictures depressing at all, they may be for others, though. Nrs 4 & 5 I can´t connect with as no faces are visible. Wonderful moment in Nr 5, but without the faces it´s almost only the burden you depict there.
Thanks for taking your time for commenting, and thanks for sharing your photographs.
Michael I commend you on tackling this important topic.
Good to see a set of images on a difficult subject with a positive eye. Another set worth viewing that tackles dementia, though from a much more personal perspective, is Philip Toledano’s ‘Days with my father’ http://www.dayswithmyfather.com/#/0.
Rob
Michael
Congratulations for a wonderful series.
This brings several thoughts to mind. First, thankyou for the positive spin. The dark side is the obvious place to go with this, but, along with the pathos, I see love, gentleness, humour, caring,…thankyou for that.
I am also reminded of myself, as a young man, living in a houshold which included my Cree granny..deep into the confusion and horror of dementia. She roamed the small house at night, didn’t know where she was, delusional, crying, confused. Yet, there were moments of lucidity, and even fun where she could laugh at herself. Here is one of the last photographs I did of my granny, 1969, http://www.pbase.com/glafleur/image/132362259
These are very beautiful and inspirational photographs. Thankyou so much.
Good morning. Dear Frostfrog and Dominic, thank you for taking your time to see and comment. Gordon, thanks so much for sharing your picture and memory.
To everybody who reads this and who has also been taking photos of someone with dementia: I would like to swap prints and the stories behind them with you if yours are as good as Mark´s and Gordon´s. What do you think?
hi michael,
yes, I guess it is from around the corner ;-) But I stay more in India these times. But if you like have a look at some of the photos I took in the Alzheimer-communities in St. Georg and Alsterdorf: http://nanaziesche.com/alzheimer_intro I was really amazed by the bright and friendly atmosphere in these houses, but I guess one has to mention, that the inhabitants were mostly only phase I or II (or how you call it).
Happy to see a reportage written with colors.
Although the subject has been already deal with, some shot are good, I love the one with the lady with veil on the bed.
I don’t like the entire work, about my opinion you need to develop it more.
cheers
GB
Michael,
very well done i think. and with dignity…
i love the verticals (refreshing), especially #4 & #16.
#18 is also very powerful, and so sad…
inspirational work, thank you.
An elegant, mature, heartfelt and very moving exploration of a difficult and cruel aspect of the human condition. Thank you.
Nana, thank you for the link. In fact places like the ones you saw can if run by a good staff be real peaceful retreats and spiritual places. I like your photo with the old lady in blue sweater on her bed with her carer kneeling in front of her. Dare trying more proximity!
Gaetano, thank you for your comment. What direction would you like to see it developed?
Sam, I like your “Pictures from Home” very much, they follow a visually strong thread. I work on a project on Aboriginal Australians and dementia, so I might come round for a chat later this year? ;-)
Paul, your Limo photo is a Eggleston-type masterpiece that evokes a myriad of stories in my mind.
Thanks for sharing your thoughts here. Hope there will be many more.
Sorry, Sam, of course it should read “Postcards from Home”. ;-)
Mark, Gordon and Nana – I came back and looked at all your photos. Very good. Thanks – and thanks also to Eva and Rob for the links. It is good to see how others have handled this material.
ESSENTIAL BEAUTY
In frames as large as rooms that face all ways
And block the ends of streets with giant loaves,
Screen graves with custard, cover slums with praise
Of motor-oil and cuts of salmon, shine
Perpetually these sharply-pictured groves
Of how life should be. High above the gutter
A silver knife sinks into golden butter,
A glass of milk stands in a meadow, and
Well-balanced families, in fine
Midsummer weather, owe their smiles, their cars,
Even their youth, to that small cube each hand
Stretches towards. These, and the deep armchairs
Aligned to cups at bedtime, radiant bars
(Gas or electric), quarter-profile cats
By slippers on warm mats,
Reflect none of the rained-on streets and squares
They dominate outdoors. Rather, they rise
Serenely to proclaim pure crust, pure foam,
Pure coldness to our live imperfect eyes
That stare beyond this world, where nothing’s made
As new or washed quite clean, seeking the home
All such inhabit. There, dark raftered pubs
Are filled with white-clothed ones from tennis-clubs,
And the boy puking his heart out in the Gents
Just missed them, as the pensioner paid
A halfpenny more for Granny Graveclothes’ Tea
To taste old age, and dying smokers sense
Walking towards them through some dappled park
As if on water that unfocused she
No match lit up, nor drag ever brought near,
Who now stands newly clear,
Smiling, and recognising, and going dark.
–Philip Larkin
We invent the world and spin it inside and around the luminous lives of that fecund universe rudden-rooted inside the sodden field lain upon our shoulders, a remarkable head.
Though I have been a devout atheist since I first was able to peak behind the curtains of my elder’s insinuations, the divinity of our extraordinary minds has always, and continues, to leave me awestruck. The mind a map of the universal beginning and ending of things; the mind a flash=pop of the entire universe: our prodigious abilities to create and wonder and imagine and destroy has always been for me, akin, the most close, example of what we mirror-see as the most close example of the sanctity of life, both terrestrial and beyond. The luminous divinity of our minds and its staggering capability. All that universe in the space of a palm.
What also staggers is the immensity by which it pains and suffers, of the world externally and from the breech of itself and it’s encounter with the world and self. The mind, that most beautifully beatific machine and sea, so easily dissipates and withers away, it’s race toward both loss and the abyss. It confuses and confounds, not matter our portals or investigations. That magical alchemy filled with more potency than the philosopher’s stone, and yet how easily it is vanquished, how easily it erodes, how easily it thins into air and wasp.
And yet, is this not still the same extraordinary arc to which our minds are justifiably praised, the work and the dreaming, the creating and the theorizing, the formulating and inventing, the solving and the destroying. The mind is our glorious birthright and has done us the greatest of good and the most horrendous of poor, and all that mixing an extraordinary maze of dendrite and chemistry, electric charge and memory, spongey locomotion of neuron and dampened secretion of time….and how there all that unrevealed by scalpel and magnetic resonance is still the greatest of mystery….
and Michael’s essay, to me, is a lyrical, beautifully composes celebration of that ‘divinity’ and grace, which in fact is the divinity and grace of our lives, even in our stumbling and disappearing. For me, “Facing Dementia – A New Approach” is an essay of grace, an essay that deals honestly and openly with loss, with disappearance and with the struggle of the refuge of the mind and our place in that:our homes and family. But it accomplishes more, for it also reveals (unlike most essays on dementia I have seen) the special creativity, almost musical in its composition, of the lives of those facing the disappearance of self. In other words, while the loss of self and memory, the loss of faculties and sustaining coordination, is a profound and eviscerating truth, there is in quiet moments and pockets of time, extraordinary breeches of beauty and creativity. I know this. I know this truth first hand.
Like Jim Powers, I too have dealt with both dementia and alzheimer’s first hand. My great uncle died of the disease, or rather, died after the deterioration of his faculties, mental and physical. He was a great person full of extraordinary vitality and creativity. A fireman by profession, an amateur collector and photographer by heart. He was the husband of my grandmother’s sister. The last time I spoke with him, on the phone, was when i lived in Los Angeles, and my grandmother put him on the phone as I wanted to speak with him. I have never, since, forgotten our conversation: “Bobby, bobby the sailboat with the red sail and green water. You sailing today, such a red red sail. good, wheouvweorinoer (unintelligble word) wish, sail sail…” and the sound of his urnine hitting the floor and my grandmother taking the phone away from him and saying, ‘bobby, george is going to the bathroom, i will call you back.”……and now another of my grand uncles is winding down the remains of his days (he is 90) with severe dimentia and my aunt (my mother’s sister) is taking care of him full time. He, a lifetime bachelor and postal worker for the u.s.post office, was also a great story teller. My favorite of all my great uncles and the last time i spoke to him, he was shocked at ‘bobby, you’re so tall now and so thin, you used to be a chubby boy’ (remembering me only as a 8 or 9 year old). and ironically, just this past week, my aunt (the caregiver) came to visit me and marina and dima (her vacation) while my uncle was placed in a care facility for 3 weeks. the trip was interrupted as my aunt received a report that my uncle had been seen in front of a window, naked, with a sign around his neck with the scrawl ‘help me’…..and Marina’s grandmother died of alzheimer’s (her stories are profound and heartbreaking) and the disease has again return to her family……
i provide this back ground because, like Jim, I know and understand first hand the profound pain and sorrow and exhaustion that accompanies the withering away of loved ones: their fear and sadness, their anger and exhaustion. He is right about that, for sure. But I think he is WRONG about this essay.
This essay is filled also with another truth, that i have seen first hand. That the mind, even in it’s falling away is an extraordinary and vital and beautiful organ that provides extraordinary inspiration and accomplishment even to those suffering from a loss of power. this essay, to me is about that: both the loss and the holding on, the creative building of things.
I love that the essay is posed by color, lyrical color, rather than b/w. I also love how Michael has shaped, with great cinematagraphy, the spaces within each frame. The space and distance of people and the people reveal, as both truth and metaphor, the distance (between people, memory and ability) that the suffers (and family memmbers) of dimentia negotiate. It is a kind of dance, filled with both love and wonder and sadness and letting go. this series is really more akin to a musical movement, how both the sufferer and the family members are both constricted and break free from the boundaries imposed by both the disease and the relationship. It is an essay of re-discovery, for in fact THAT is what happens during the disease, for good and ill. Anyone who has taken care of someone understands that, the reshaping of relationships, and the re-seeing of things, of life. Often time, many dimentia patients have an extraordinary, almost childlike, beauty and refreshness to how they see the world, almost reinventing it. This of course because painful, knowing it comes with a price (the withering away, the deterioration of a former self)…but this is here…
a song of love, a song of the living, even amid the dying and decaying….
i do not want to over-analyze the narrative or pictures…but suffice it to say that this is about acceptance….this essay is not about loss per se, but about inevitability, about acceptance…and about how even in the deterioration and the losing of things there is that magic self….the magic tireless, divine self….
and i think michael for sharing us an essay that is filled with so much tenderness and love….
not only for the patients and their family…
but for the living…
for the divine in each of us…
bob
dementia is the most inhumane thing that can happen to a human… how can the body still go on without the mind and spirit there? memories are repeated over and over because there seems to be nothing left there to hang on to. dementia destroys the best of the living especially the families who care for them. it is exhausting, unforgiving, so routine yet unpredictable…
i have wished and hoped to see that small spark of recognition, tell tale signs of love that’s hopefully still there like a bandaid tenderly applied on a bleeding knee or heart. so many times i have so wanted to try my very bestest to grasp their faces and tenderly love them like they used to – someone in their lives who might have missed their tenderness… and yet sometimes i am afraid if the yelling is directed at something gruesome that i have done to provoke it.
i so so appreciate you doing this in color.. your colors capture the brightness that i always hope to find when i meet this savage.
if i may share, i did know a couple. the husband had lived about 300 miles away and always came down to see his wife every weekend. high school sweethearts they were, he’d said. she’d dwindled to a small spirit over the years, couldnt even remember his name. he always had to introduce himself to her each time. until the time, he ended up at the hospital for three days through one summer weekend and rose rolled in a wheelchair, looked at her husband and lovingly said: ‘George, let’s go home’.
Bob, I feel honoured by your epic reply, even humbled. I´d like to answer that appropriately a bit later.
Gracie, thank you so much for your thoughts and your wonderful story. The final few sentences quite beautifully explain why I love doing this project so much. The ambivalence and non-predictability that come with dementia are touching very deep, sacred aspects in our lives.
Dementia is a condition (rather: a variety of conditions) that none of us would wish to experience first-hand. Our society has come to being so ego-centred with the cognitive aspects of our mind being the golden calf we worship. We are so controlled by our intellect that we forgot to question the whole concept, but questioning it from our mind´s position would be paradox, impossible. Only if we try to take a step beside and try to take on an observer´s point of view things will fall into place.
Myself I have come to the conclusion that the human brain will never be able to solve the profoundest of its own mysteries. We are much more than humanoid clusters of cells that follow predictable patterns organized by an omnipotent brain. If we were there would be no sense of beauty, no music, no arts, no love.
Scientists found that thoughts are an electro-magnetic action, they also found that our heart is much more active in terms of electro-magneticism than our brain etc etc. Measurable proof that there are other levels of thinking, and proof of what spiritual people of all times and places tried to teach: our heart being a powerful organ way beyond its amazing physical capabilities, a higher instance. Even the rest of our body has its way of memory that is not connected to our brain.
If we try to connect to people with dementia unconditionally and through our hearts we will experience the most amazing things. No exception from the rule. If we try to hang on to the past, to how or what a person was, we will fail. When the intellectual mind recedes emotions take over, and people with dementia more and more live what spiritual seekers of all times have tried to achieve: they live the moment. Because its only this moment it becomes eternity to them, all there is is the moment. So it is our responsibility to acknowledge just that, to make the moment precious, worth-while, happy. And inevitably these positve emotions we evoke and foster will feed back to us, they will ease our burdens of care, our feelings of guilt and grief.
Dementia does not destroy the best of a family, unless we allow for that. While caring for a loved one with dementia is a huge task whatsoever it is up to us to turn it into a nightmare or a time of intensive proximity, of love, of learning, of consolation and forgiveness. So by no means it is the most inhumane thing that can happen to a person.
Gracie, your last sentences beautifully contradict what you wrote before. That magical moment captured all the brightness and all the colours you´d always hoped to find. There was a rainbow in front of your eyes, all it took was to open them.
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i reread your post mr. black.
so beautiful… matches perfectly the intent of the essay…
you call yourself an athiest and then talk about our own divine…
we still have a lot to know about our bodies and the mind especially The connect..
this is why i am not (an athiest) because in these instances in one’s life, there is nothing i think that saves me and pushes me forward or makes me feel any more loved when i am tucked in the coldness of the gutter except by the grace of power from above.
Bob Black
I just read your July 1 post. As always, perhaps even more than usual, I am grateful for your gentle insight and way with words. Thankyou.
I do not think that it is fair and compassionate, and instead rather arrogant and thoughtless, to tell the families affected by one of their members that this is because they “didn´t know about dementia well enough, because you have fallen victim to all these stereotypes and misconceptions and denegation”… and with a Reaganian argument that they hadd no idea the Alzheimer’s society could help, of only they had the inclination to ask where it is.
My very best friend died of Alzheimer last February. true, the last years of his life were made the best he could wish for, but only because he could afford it. 24/7 home care is simply not that well covered by medicare. Maybe germany does a better job so that families are not taxed financially by the upkeep of the parent affected. I know that in france (the country most lauded for its health system), many daughters or sons have to make a choice, because even there, the financial burden of 24/7 care had them quitting their job so they become the primary care-giver. Institutions exist, but it is not that cheap either.
My friend had lost all short and median memory ( but anything until WW2, he was as sharp as a knife!), yet he could be “on” any given moment, and never quite lost his good-naturedness. yet in the end, he started screaming for help, and started biting the care-givers. Themselves told me he was the easiest patient they ever had, as some are very difficult with, and threatening physically. While doctors/hospitals and conservators make tons of money out of managing the person’s estate and physical condition, these workers make 10$ an hour, a 24 h shift is 120$ (which is what a professional conservator makes in one hour, plus a percentage of the estate) . That was quite a reminder about the “repartition of riches” in our societies, if I ever needed one.
We can and should do our best out of any given situation in life, see possible silver-lining, but to characterize that if people “knew”, Dementia could be turned into a trove of opportunities is a bit too new-agey, touchy-feely for my own taste. I also know that Tommy, had he had a choice, would have asked me to put a pillow on him (and give his money to charity), rather than go on like a mere left-over of his better self. The onslaught of the disease can be helped in the beginning, and not everyone is affected the same or takes the same course, but eventually, it is debilitating and therefore painful. And painful, suffering is part of our lives. No need to deny it, or wear pink-tinted glasses.
The essay is fine, but it’s about old people. nothing in itself tell us they are affected by dementia. Though it’s not a critique. It is good that you and David chose to bring this subject to BURN in the form of your essay. What is sad is that as more and more will be affected, plenty will not have the wealth or love and self-sacrifice from kins to make the last stages of their life on earth more than a managed and heavily medecined agony.
And now, my neighbour Sam (Maybe david remembers my pix of him on road trips) is himself affected, he is now in a retirement home, not too unhappy, but wondering why he can’t go home. I will go see him tomorrow.
Herve, thanks for your comment. I hadn´t followed this thread for a while, thinking it had already stopped, so please excuse my late reply.
Answering your thoughts I´d like to refer to my first post answering Jim´s comment. It is so sad to experience what you experienced with your friend, and too many people share hard times like you did. Dementia is a painful process for everybody involved, much like an exhausting pilgrimage. But you´ll come along some turn-offs from this mainstream Alzheimer´s downhill path. More and more people understand and work passionately on making these turn-off signs visible to the travellers, both people with dementia and their loved ones, rather than paving the psychological downhill road to keep that billion dollar research system running. But it takes real guts and trust to leave the beaten tracks.
More and more people start accepting and living the moment to the fullest, with the most amazing rewards. This project is not about wearing pink-tinted glasses, it´s about taking those grey-tinted ones off. It´s a matter of attitude towards life and what makes us humans, and to my mind that´s not a bunch of memories.
Your comment is very passionate, it represents what many people think and feel about dementia. But it´s just one side of the coin, it is your personal point of view and truth, it´s not the one single truth that you picture. My work tries to give clues to that flip-side of the coin. If you visit your neighbour Sam, try to look at what´s there rather than what´s not there anymore. All the best to you, take care.
MICHAEL
thank you for writing again..anyone can see how much you really care…these threads are always open and you are welcomed to write any time…
cheers, david
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