After having published Swedish Death Cleaning for Artists & Writers, Swedish Death Cleaning Part 2 (including keeping your homeschool library crisp and updated), and Swedish Death Cleaning Part 3, here follows decluttering in relation to dementia. It is based on empirical experiences by the writer, Paula Kuitenbrouwer, as well as on input by her friends (all in the same age group, dealing with 80-90+ parents).
———-
I like to state beforehand that as a lay person, having no medical degree and no education in geriatric care, I am aware of making simplifying and generalizing remarks. I hold a degree in Philosophy and I work as an artist. My article presents ideas (only), unpretentiously, and it welcomes criticism.
—————————
What is Swedish Death Cleaning? Or Döstädning?
“Swedish Death Cleaning is not about cleaningbut more about decluttering (which makes cleaning easier). It is a method to reach a permanent form of home keeping and home organization easier. Death Cleaning makes dealing with your possessions smoother both for yourself as for your heirs. You practise Swedish Death Cleaning till you feel comfortable with your home, your storage, home keeping, and what you will leave behind.”
Why start döstädning at 60 years of age? At 60 you are past your midlife but perhaps around the time of your ne plus ultra. At sixty you know what is on your bucket and more clutter and cleaning is certainly not on that list.
From 4 objects to 3: that is 25% decluttering.
Memory Loss & Dwelling in the Past
A compelling reason to do several rounds of Swedish Death Cleaning not only has to do with age but also with dementia. Many people with later-stage dementia often think they are at an earlier period of their life (known as ‘time shifting’). I lack the medical knowledge whether this dwelling in the past can be prevented but many say there are factors like good sleep, good hearing, physical activities, reading, and good food that can postpone the onset of dementia. Maybe adopting Swedish Death Cleaning should be on that list as well. I like to share some empirical observations that support this thesis.
Dementia comes with forgetfulness and the first memory that goes is one’s ‘working-memory’. This is the retention of a small amount of information in a readily accessible form. It facilitates planning, comprehension, reasoning, and problem-solving.
‘What did I say at the start of the meeting?’
‘Can somebody help me to recall how this conversation started?’
After that, dementia affects short-term memory and later progressively long-term memory loss.
‘I haven’t seen you for ages’, whilst you paid a visit two weeks ago.
Dementia related memory loss is like a constant ripping out of pages of a family album starting with the most recent pages and working its way to the beginning of the book.
‘I can’t remember her (sister-in-law) but I do remember my brother’. Because the brother was there at one’s youth and his marriage came much later.
The past is helpful, or maybe not?
One might think that it is helpful to surround a demented patient with family photos, sentimental stuff, and a room that looks like a mood board of his/her past. Like a mnemonic. Like a 360-degree museum exhibition of one’s past. But what if the contrary is more helpful? What if you limit the exhibition of the past and surround a demented patient with a more modern surrounding that stimulates the lasts bits of an inquisitive mind? (Disclaimer, of course, not all patients suffering from dementia have a curious mind to start with).
Let me return to the picture of a demented person surrounded by the past: family photos, old clothing, old fashioned furniture, old digital devices (because they can’t handle newer versions despite that the most recent devices are more intuitively driven), old books, old everything. Like stepping into their house is like stepping into a time capsule.
Add the here & now
Swedish Death Cleaning and Japanese Minimalism puts a strong emphasis on living in the present, in the ‘here & now’. Old and sentimental items gravitate a person to the past. That can be wonderful, especially when you have beautiful antique. Equally an object reminding of the past might prompt feelings of grief: that the past is over, that one’s life is lived, and there is not much time ahead anymore. This all might cause intense longing to the past, which is not good. If one lesson Buddhism and Stoicism has taught us, it is that we suffer when we wrongfully long for something that we cannot have. When we think of ‘what should be the case’ instead of accepting ‘what is the case’, we create an impossible situation, and as a result we experience Duḥkha (Sanskrit: दुःख; Pali: dukkha), which means suffering. We are not ‘here & now’ because we want to return to the past, relive the emotions that belong to the past resulting into missing out on being in the present. That living in the past, that dwelling in the past can cause a loss of joy. And if there is one thing accelerating dementia, it is depression. ⠀⠀⠀⠀⠀
From that follows that Swedish Death Cleaning might help people as from the age of 60 to have a good look at (sentimental) belongings. Generally speaking one is fit enough at 60 to seriously declutter. One is knowledgeable to know what is needed and what is in the house purely for sentimental reasons. One has enough time to do several rounds of decluttering at 60. Start at 70 and it will be harder. Start at 80, and you might need help especially with lifting heavy stuff.
Why should be do away sentimental objects? Of course not all, but maybe a whole lot. Like 50%? Or perhaps even 70%? Because perhaps it is just better to let the past go and not create a time capsule of the past. Perhaps because all the time dwelling in the past, clinging on to old fashioned possessions, reliving the memories provoked by old stuff, prevents one from relating in a healthy way to the present. All that old stuff certainly does not stimulate a person to explore (create new neural networks) the present.
For a long time we were taught that we are most fertile and have the best brain neuroplasticity around the age of 25. It was a sobering even depressive thought to know that as from 25 years of age onward we are going downhill. Nothing to do about that as it is just aging: non-pathological changes in the structure of the adult brain, as Santiago Ramón y Cajal (1852-1934) coined it. However that depressing knowledge soon received hopeful updates: we shouldn’t live sedentary lives, we should do aerobic exercise, keep on reading, and staying engaged with society, all to delay shrinkage in the prefrontal cortex. The key to not shrink cognitively is to continuously creating new pathways and connections to break apart stuck neural patterns in the brain.
From that follows that the refreshing and renewing effects of döstädning might contribute to keeping the brain as fit as possible. To break down stuck clutter; stuck interior design. To update, refresh, modernize. That said, demented patients have massive brain damage and once dementia sets in, döstädning simply comes too late. Hence, the advice to start well before serious aging sets in. I have therefore come to believe that Swedish Death Cleaning is a very healthy way of staying in tune with changing times and that offers a way to stimulate the brain to live in the present.
Hardship for heirs
As if having a demented parent isn’t hard enough and, in some cases, it demands from an adult child to live in his/her parent’s bubble of craziness. When language, memory, and empathic thinking fall away -as is the case with advanced dementia-, old people often take medications that causes personal alienation. Add to this mix of brain damage and medications, old age related character changes which result in a child hardly recognizing his or her parent (and vice versa the demented patient forgetting his/her children). There is so much hurt because living with a demented parent demands from the healthy generation to go along with the madness dementia causes.
‘When I ask what time it is, she looks at her watch and says ’25 Euros’. All I can say then is ‘Of course’. The result is that step by step, I function in a distorted reality otherwise there is no communication possible with her‘.
‘My demented parent wants to physically fight, maybe to test his strength or for dominance. He is a very combative person although he hides it under layers of charm. But the hiding mechanisms are gone, now he starts to smack me to provoke me’.
Cleaning out one’s estate
The loathsome task of cleaning out a parent’s estate is hardship. Having had to deal with the dementia related madness and not seldom hurtful remarks by a demented parent, now one must inherit all that stuff that reminds you of the hardship years (dementia can last 10 years). Therefore….
Do not start too late!
“My parent was a materialist. Swedish Death Cleaning would not have made sense to her. If she could, she would have taken all her money and belongings into her grave. And because she didn’t let things go at the right time, time took revenge; her stuff lost its monetary and sentimental value for future generations. It is sad.
Despite that some old people won’t or can’t do Swedish Death Cleaning, I keep on pointing out its benefits. Seeing the time capsule of my demented parent made me desire Swedish Death Cleaning for myself! I have been surprised how much I felt a need to busy myself with Swedish Death Cleaning and I have thought that perhaps next to my need for a neat home, my desire to declutter has to do with having a demented parent living in his house of the past. Sitting alone there day after day, dwelling in the past, isn’t a healthy situation. I like to prevent that for myself and for my family. I have been döstädning like crazy. My family members are unhappy with the word Döstädning, but very happy with the result! Our living room, hall, and kitchen are now so spacious, neat, and lean. I feel intuitively that that is better for the (my) brain. It results in more space and more happiness.
Dutch Declutter Assistance
Help is around the corner…
A Dutch National Denk Tank (NDT) offers ‘Ontspul-dagen’ (declutter-days, click here) to old people. It is part of a program to offer older people a meaningful way of growing older. Decluttering, the NDT says, provides room in one’s house and in one’s head. Research shows that few people prepare for what happens to their stuff when they must move (due to old age) or check in an old people’s home. Or for what happens to their belongings after their demise. The NDT states that the age group of 60 -75 moves house the least of all other age groups. And moving house is the moment to declutter. Hence old people have too few decluttering opportunities. Old people can request help with decluttering which -hopefully- leads to more physical space (safer) and less anxiety to move house.
A home reflects its owner’s health, somebodies emotional and brain health. Declutter your emotions and your brain from the past in order to live happily and healthily in the present.
My wish….
What I fancy about growing older is steadily creating a home that is free of clutter and free of sentimental stuff that ties me to the past. I like to surround myself with a few things that offer joy and happy memories, and the rest should go. The older I become, the younger and more minimalist my place should look like. Why? Because its presence, its design, must radiate my brain health and vitality should be firmly rooted in the present.
I wish you many happy hours of Döstädning. Contrary to its morbid name, it brings happiness. It is not easy, especially letting go of gifts, sentimental objects, or heirlooms. But it frees space with invites new inspiration and a lightness of being.
Disclaimer 1. I am not indicating that old age dementia is curable through Swedish Death Cleaning but I feel much sympathy for the statement by the Dutch NDT that decluttering creates both physical and mental space.
Disclaimer 2. I am also not stating that living in the present prevents old age dementia but I would like to see research done on that subject. Science has just established a link between air pollution and dementia, it is not unthinkable that a minimalist and clean home might have beneficial effects as well.
This article contains desperate remarks by those who live close to a patient suffering from dementia. Those who have contributed to this article are willing -albeit anonymously- to open-up about their thoughts, doubts, and feelings.
By sharing honest comments on living with dementia patients, readers are -hopefully- offered some support in dealing with their harrowing feelings. Sharing thoughts on the difficult predicament of dealing with a family member suffering from dementia feels like backstabbing them. However, not being able to talk about the unspoken terror of dementia is suffocating as well. Those taking care of loved ones suffer from feelings of guilt, anger, and loss. We must acknowledge the dark side of having to soldier on with a depressing task.
Nancy Reagan called dementia ‘a truly long, long goodbye’. She nailed it. It is draining.
‘I don’t want to visit grandma! She is not my grandma anymore‘ is a text in one of the many children’s books on dementia. Children say things adults are ashamed to say but feel nonetheless.
Books for children on dementia illustrate this article, showing ‘between the lines’ the inevitability and importance of helping young generations to understand the worldwide growing epidemic of dementia. A pandemic we don’t even fully comprehend ourselves.
THOUGHTS & DOUBTS
“Since my parent started to suffer from vascular dementia, I have searched for answers to burning questions. But most answers promote saint-like qualities, like endless patience and replying to meanness with kindness. I find it hard to muster positive feelings during the long journey. Moreover, I wasn’t looking for advice on becoming a nurse or saint. On the contrary, I looked for explanations on how damaging it is to be in close contact with a demented person/parent. Like when your demented parent is frequently body shaming you. And when your demented parent calls you degrading names. When you are at a total loss whether what your parent says is parental manipulation or madness caused by cognitive decline. You have to look hard because most advice is about increasingly devoting your time to caring or even to stopping and reversing their cognitive decline. This is unfair because dementia neither can’t be stopped nor reversed”.
Dancing with Memories, by Sally Yule and illustrated by Cheryl Orsini. ISBN: 9780733342578
ANGER
“For centuries women were trained to keep their emotions and anger to themselves, and to venerate her parents. In case a daughter blows her top, especially whilst taking care of a parent, that is seen as something punishable. I was called a witch and madwomen, such highly predictable reactions that a male dominated society has instilled in us since the Middle Ages”.
CARING FOR CARETAKERS
“I need to understand why I always fall ill with a sore throat and tiredness after having kissed my demented parent. Is it the lack of personal hygiene among demented patients? You are continuously advised to be careful not to infect elderly, but what about a contrariwise situation? Elderly take tons of medications which caretakers do not take and perhaps these medications protect them? (Just one of the unanswered questions). Another example: when I google for creative help with dealing with a demented parent, I am advised to keep a demented patient happy and stimulated with crafts, like colouring books (which I bought for my parent). But why is all advice geared at those suffering from dementia? There seem to be a lack of empathy with those who deal with a demented patient. Demented parents might live for another 5-10 years. It took me courage to admit and reconcile with the fact that 5 to 10 years is too long from me. My reservoir of loving feelings (many based on gratitude) has dried up. I have no emotional fuel anymore and that makes me feel guilty.”
Why Doesn’t Grandpa Remember Me? A Children’s Book about Families Affected by Dementia. Author: Robert Sky Allen PhD. ISBN 979-8886443431
OPENING THE FLOOD GATES
“Over time I started to notice that the more honest I spoke out about the human predicament of having a demented parent, the more flood gates opened up about suffering from dealings with demented family members. This felt like opening Pandora’s Box ; all manner of misery and evil flew out. Only one evil remained inside the box: ‘hope’. Hope that things will improve, which won’t happen”.
Grandma and Me: A Kid’s Guide for Alzheimer’s and Dementia. Beatrice Tauber Prior Psy.D. (Author), Mary Ann Drummond RN (Author), Julia Walther (Illustrator)
“My friend has her father coming over almost daily. She looks out of the window and there he stands in her garden. ‘Oh no, there he is again’, she moans. It is painful to see how a loved and respected parent becomes a burden”.
“It is so hard when your parent, who has been a beacon of sanity and even wisdom, starts drifting”.
Written by Registered Social Worker and Dementia Care Expert, Jaclyn Guenette / Edited and Illustrated by Award-winning Author & Illustrator, Kathryn Harrison. ISBN 9780994946768
WHEN DEATH IS DENIED
“Dementia has existed in past times, but I can’t help thinking that modern medicine has made it much worse. People die less from flu, heart diseases, diabetes, and strokes. Elderly patients are pulled through health crises, however there are no medicines that keep their brain functioning. Then, when death is denied, dementia knocks at the door”.
“Tricking death? We know from Greek Mythology what happens when somebody tricks death. Look at Sisyphus! Sisyphus could be a perfect metaphor of dementia: everyday a demented person takes pills or participates in workshops to strengthen and recover neural pathways only to progressively suffer from cognitive decline.”
Nice to meet you again, by Suzanne Bottum-Jones. ISBN: 978-1942586340
TIREDNESS & GOLDEN YEARS
“I am so tired. I am so so tired”.
“Those who take care of their elders with dementia are 50-70 years old themselves. Being confronted with dementia is hugely depressing. If there is any happiness in the golden years it is obliterated by having to take care of demented parents”.
Really and Truly by Emile Rivard & Anne-Claire Deslisle, ISBN: 9781445119410
LACK OF EMPATHY
“I felt like dying myself, that exhausted I was taking care of him during the pandemic. I had to train him to understand the pandemic and its hygienic guidelines. He was convinced Covid wouldn’t affect him. He -by then- suffered from idée fixes about living independently and healthily up to the age of 100. Empathy seemed gone. He denied the toll caring for him took on me. I would become collateral damage to his relentless ambition to stay ‘independent’; but what he didn’t see that his ‘independent living’ was based on me taking care of him at least three times a day! When my daughter said to him that I was worn-out and depressed, he said ‘Good for her’, that uncontrollably mean he was. He wrote emails to my husband that I was crazy. It is said that demented women often grow depressed and demented men become mean. Boy, can I testify to that. There is nothing rewarding about taking care of somebody with dementia. It is losing, losing, and losing”.
United: Caring for Our Loved Ones Living with Dementia, by Gina Awad and Tony Husband (Robinson 2022). ISBN 9781472146519.
“There are so many now with dementia and Parkinson! It is shocking. Who is going to take care of all these patients?”
“The years my parent was slightly demented, were the most difficult. Everybody was mental and evil according to my parent; suspicions ruled his mind. His paranoia spread like wildfire through his family and friends. Once diagnosed with dementia, chicanery progressed into a more passive condition, which was less hard on those around him. The classic tale of dementia, isn’t it?”.
Dementia not only affects the minds of its victims; it also creates a world so fragmented, so skewed and redundant – so indifferent to normal rules of behaviour – that caregivers unwittingly become part of the madness. And this, unfortunately, is what the doctors and the guidebooks offering counsel to caregivers often fail to notice. Because we automatically posit a clear distinction between caregiver and patient, between the normal and the abnormal, we don’t see that the true burden for caregivers is, in fact, the absence of such a divide. When a loved one loses cognitive purchase, it’s not only his or her world that begins to unravel, but the caregiver’s as well.
Grandma by Jessica Shepherd, ISBN 978-184.643.5973
EMOTIONAL CONFLICT
“My conflict is mainly two distinct voices battling inside my head; one coming from the grateful ‘child’ (implying it is pay-back time, thus taking care) and the other voice is coming from anger that she didn’t take pre-emptive measures when she was still capable of doing that. It is horrible to see a person turning into a shriveled and mad version of herself. Who wants that to happen to oneself and their family?”
“One day he suddenly said, ‘I apologize for having become such an oaf. I apologize for my bad behavior’. I was astounded and it broke my heart to know he was aware of his decline. This was one of those rare moments of self-reflection which make you -for a short moment- think his dementia was just a bad dream. It is like a candle that has burns brightly, then starts to flicker, and finally extinguishes. That flickering self consciousness of demented patients is so hard; one moment you have a reasonably meaningful conversation with the person you remember, the next sentence it is gone. Dementia has you fluctuating between love and loathe. Eventually you grow so emotionally exhausted that you start worrying about your own mental resilience. I often thought let me take care of an unknown demented person and let the family of that person take care of my father. Having no past, no blood ties, no love would make it less debilitating”.
I love my Grandpa! by Sally Flint, ISBN: 9781912535767
HOUSING
“We have an army of old, vulnerable, and invalid people living in spacious houses whilst young couples can’t find homes to buy. Our society suffers from an epidemic of dementia and ill, old people who do not enjoy or maintain their large homes, and can’t keep their gardens. They are encouraged and facilitated to grow old at home because of a futile idea that living independently would slow down dementia. That is a fallacy. They occupy not even a third of their homes and sleep 60% of the day, while young families wait for suitable houses for years. We need more -not less- old people’s homes. And fear of being a resident of an old people’s home should be tackled with smart campaigns.”
The Tide by Clare Helen Welsh, Illustrator: Ashling Lindsay, ISBN 978-1788810869
ESSENTIAL SELF DEFENSE
“Stop visiting your demented family member if your parent hurts you. They do not remember your visit anyway”. (Trainee nurse).
Coffee, Rabbit, Snowdrop, Lost by Betina Birkjaer, Anna Margrethe Kjaergaard, Kongerskov ISBN: 9781592703739
SENSE OF LOSS
“During the first stages of their cognitive decline often there is loss of hearing and/or loss of sight. Patients feel the impending and inevitable loss of independent living too. If I only had known beforehand that all that loss would be projected on me and that my caring (for years!) would be trashed. My demented parent has blamed me for the whole caboodle but even that is now forgotten and now he grabs my hands, kisses them, and won’t let go. I have gone from an angel to a villain and back to an angle again in a matter of 2 years. It is maddening having to go through this”.
“My siblings took the side of my demented parent and were quick to echo accusations that I, the primary caretaker, was a crook, a thief, and suffering from madness. (That accusation of madness was really the world up-side down). Dementia is a huge catalyst for conflict. It is not that only one brain deteriorates, the whole situation it is like being close to a dying star: the demented person expands before he/she implodes. It is unbelievable how much energy, money, and suffering went into this chapter of life“.
A Doll for Grandma by Paulette Bochnig Sharkey (auteur), Samantha Woo (Illustrator), ISBN 978-1506457383
BODILY COMMENTS
“I know that I have a curvy body but to constantly hear that I have big boobs is not nice”. (Trainee nurse, old people’s home)
“I read that an indigenous group had a special name for demented elderly: ‘Those who forgot to die’. I understand that name now that I have seen dementia close up. The body keeps going while the brain is dying; the body survives the brain”.
Always My Grandpa – Linda Scacco and Nicole Wong, ISBN 978-1591473121
UNSOLVED ISSUES?
“There is a theory that demented persons dwell on earth longer because there are some unresolved emotional-psychological issues. Isn’t that an overly romantic notion? How perceptive would a demented person be to therapy? Often their memory is damaged, and having a meaningful conversation is impossible. Any unresolved issues will stay unresolved”.
Ice Cream with Grandpa: A Loving Story for Kids About Alzheimer’s & Dementia by Laura Smetana (Author), Elisabete B. P. de Moraes (Illustrator), ISBN 978-1737140948
NO CURE FOR DEMENTIA
“The medical industry and doctors are largely responsible for suffering families. I understand they are bound to their Hippocratic Oath, but saving old people’s lives when they are suffering from dementia is questionable because there is no cure for dementia. The daily burden is not carried by doctors but by family members and it feels like staring into the abyss”.
My Book about Brains, Change and Dementia, by Lynda Moore (auteur), George Haddon (Illustrator). ISBN 978-1839977480
DEMENTIA AS A MARKET
“I read your article in its beta-version and I thought it was a cute idea to embellish your article with children’s books. Having no young children it had escaped me that there are so many children’s books on dementia. It made me wonder how big the dementia book market is. I googled it and a world opened: so many books on dementia! For those who taking care, autobiographies of patients, colouring books for dementia patients, children’s books, and self-help books. Although I am happy that not only the pharmaceutical companies and their shareholders profit from dementia, it is kind of sad. Everything surrounding dementia is loaded with sadness”.
Big Bear, Little Bear and Dementia, by Katie Faulkner and Iain Welch, ISBN 979-8751316563
HIGH EDUCATION MASKING ONSET DEMENTIA
“Remember Sister Monica Joan from the popular television series ‘Call the Midwife’? She is a well educated nun and it is unclear during the first episodes whether Sister Monica Joan is highly educated and knowledgeable about classical literature (she is throwing around impressive literary quotes), very eccentric, or…. in her early stages of dementia. The best remedy against dementia is learning and storing knowledge, but being smart and knowledgeable also disguises dementia. With many well educated elderly, families often dwell in the dark too long about the onset, progression, and various stages of dementia. My family spotted dementia 2-3 years earlier than doctors did; for 2-3 years we thought we were growing intolerant”.
Mijn oma is opeens heel anders, S. Rieckhoff Sibylle Rieckhoff, Jürgen Rieckhoff Dutch, ISBN 9789053415238
FIGHTING OR ACCEPTING DEMENTIA?
“We are in conflict with demented patients. We actually are fighting them, aren’t we? We approach them with our typical West-European, fixing ambitions. We fight their decline and we want to stop their regression into their past. We stimulate them to be in the here & now, and we make them swallow daily cocktails of dopey pills. Why do we not accept their senility? What are we doing to them and to ourselves?”
“I heard a sweet story. An old buddy, in his late 80s- visited a demented lady. The demented lady was in a jubilant mood. She was saying something incomprehensible and then she burst out in laughing. Her infectious giggles made the buddy laugh which made the demented lady laugh even more. For the duration of their coffee meeting they enjoyed fits of laughter. They had a jolly good time. If only I had seen those two!“
-XXX-
A huge thank-you to those who have contributed to this article. Special thanks go to the trainee nurses.
Paula Kuitenbrouwer, Drs. M.A.
Paula holds an MA degree in Philosophy and works as an artist in Utrecht. She is the owner of mindfuldrawing.com, a website with academic essays, short articles, and most of all, Paula’s artworks. Paula’s pen and pencils are always fighting for her attention nevertheless they are best friends. Paula likes her art to be brainy and her essays to be artistic. Contact Paula freely for commissions.
Should you be appreciative of this article and of other essays, please consider supporting my work.
Butterfly with poem art card by Paula Kuitenbrouwer
Two Butterfly with Poem by William Wordsworth, Art Cards by Paula Kuitenbrouwer
Two (2) Butterfly with a poem art cards with matching envelopes. The poem is ‘To a Butterfly’ by William Wordsworth. Free shipping. One for keeping: one for sending.
Poem:
Stay near me–do not take thy flight!
A little longer stay in sight!
Much converse do I find in thee,
Historian of my infancy!
Float near me; do not yet depart!
Dead times revive in thee:
Thou bring’st, gay creature as thou art!
A solemn image to my heart,
My father’s family!
Oh! pleasant, pleasant were the days,
The time, when, in our childish plays,
My sister Emmeline and I
Together chased the butterfly!
A very hunter did I rush
Upon the prey:–with leaps and springs
I followed on from brake to bush;
But she, God love her, feared to brush
The dust from off its wings.
William Wordsworth
In this essay Paula Kuitenbrouwer uses several narratives to illustrate how elderly parents can hurt their adult children. She turns to classical literature and fine arts for soul nourishing inspiration. The reader will be guided through the classical story of Pelops followed by philosophical musings and concluding thoughts.
Over a year I have collected different narratives from three continents; all are voiced by women between 55-65 years of age who have taken care of (one of ) their parents. The stories are anonymized. This essay offers a message of understanding and hope.
‘My ill and rapidly aging parent attacked me verbally. It left me shaking. After a while, I felt a need to talk this over with her but she had forgotten all about it. I know that what she said is part of how she feels about me and that hurts me’.
‘I felt such deep shame for the attack by my old father that it took me a long time before confiding in a friend. It turned out that I wasn’t alone. It was extremely stressful to find yourself in a situation where a parent turns against you. I was astounded how my father pitted my siblings against me when I told him caring for him became too much for me. My siblings ate out of his hand; my father has always had a knack for playing the victim or for acting vulnerable. It opened my eyes to a side of my father that made me question how much I had benefited and suffered from his strategic behaviour. Ever since, I haven’t been able to shake off the feeling that he had never much respect for his children; he had no problem playing them. Luckily, he took responsibility later and apologized, but by then my relationship with my siblings was irreparably damaged. He now suffers from vascular dementia, maybe being mean was a prelude to dementia’.
‘After months of hurling insults, my father returned to his charming sweetness without remembering his offending remarks. Only a vague unease lingered in his mind. He kept on mentioning he was indebted to me. It took me a long time to wrap my brain around his behaviour. What was it? Brain damage? Character? Medication? I still do not know and probably will never know’.
‘You have no idea how racist my parent became towards her Asian nurse’.
‘I have seen it in both of my families; my own and the one I married into. Some parents hurt their adult children and then when relations turn sour, they do not shy away from using their fortune to secure attention, care, and power. They speak about disinheriting as a punitive threat or action; this fast-tracks the disintegration of a family’.
‘I had times when I wondered whether I would actually survive my parent. I noticed that my physical and mental health improved exponentially the longer I stayed away. I would never forgive myself for hurting my child. I have also decided to never start any old age medications. These are drugs that keep the body going whilst the mind deteriorates and perhaps that toxic mix is largely to blame for hurtful behaviour’.
‘Having been insulted makes you question how much love there was in the first place. We are dealing with a generation that had children because that was what was expected from them. Perhaps there just is not enough love to sustain till the very, very end’.
‘No matter how often I drive hours back and forth to my parents, it is never enough. The suggestion that I fail them is often bluntly communicated’.
‘My parent used others to attack me. They voiced my parent’s disdain in unequivocalterms. My father’s manipulative cleverness withheld me for a long time thinking in terms of dementia‘.
‘It all has left me depressed and fearful for my own ageing. High age is romanticized. Perhaps it would be beneficial to offer elderly mental health coaching. In the old days there was a chaplain taking religious care of old people, now there are mainly nurses and managers who do not keep them on the right track because they have no time for that’.
‘My father discussed disinheriting my brother with me. I would never capitalize on something so unfair and hurtful, so I advised against it. But I did ask; ‘Did you discuss disinheriting me with my brother also?’ on which the reply came; ‘Yes’. The threat was out in the open. It was in big red letters written on the wall. Disinheriting hangs as a Sword of Damocles above primary caretakers whilst siblings not participating in daily chores are idolized’.
Adult children aren’t snowflakes; they have experienced social hurt as from their young schooldays. There are parents who age into angels and those who resort to toxic games, and all stages in between. The question is why? There are many possible reasons: old age, behavioral side-effects of medication, illness, drinking, rusty social skills, tiredness, decreased empathy, dwindling love, frustration, and character. The answer is seldom uni-causal. Knowing what mix has caused hurtful remarks can put suffering into perspective, so here are a few to consider (and should there be more, please add them to the comment section):
Your parent suffers from brain damage caused by delirium or vascular dementia. In this case, you will shake off the horrible remarks (sometimes even sexual remarks). However, forgiving does not imply tolerance: like with a pet, baby or toddler you should set boundaries. It is no different for geriatric people. Walk away, urge your parent to apologize to you. Prevent this behavior to normalize.
On a less brain-damaged level; parents can have too many ‘debit cards’. They pull these cards whenever they feel vulnerable (which is sad). One card is Illness, the other Old Age. Loneliness is another card and so is Inheritance. They masterfully play around with these cards; remember, they know you well; they know your weak spots. It is a power game of emotional blackmailing, manipulation, and future faking.
There can be an underlying trait of autism, arrogance, or narcissism. In the limited world of an elderly parent it is expected that their children will care for them. That is the natural thing to do, right? Well, children of older parents are somewhere between 50-70 themselves. They are the sandwich generation: taking care of their parents and (adolescent) children, sometimes even grandchildren. If caretakers fall ill or fail, a Vesuvian anger can erupt. Adult children, especially women/daughters, are to be expected to work unrewarded, unpaid, being available 24/7, or else….you will be taught an old fashioned parental lesson.
After identifying possible causes for hurtful behaviour, we need to get as close as possible to compassion. I forgo using the word ‘forgiving’ because forgiving is too often creating fertile soil for more abuse. What I seek here is Buddhist or Christian compassion and kindness which is an inner state that should not (I cannot stress this enough) prohibit assertiveness and sensible self-defense. Many caretakers feel drained, overstretched, and exhausted. They feel like taking care of their elders is a Sisyphean task. Only saints have an inner strength that helps them with their life long service. I am not saintly and maybe neither are you. I need gratitude, encouragement, and support not to grow exhausted.
Returning to kindness and compassion. Consider the physical and mental condition of elderly parents; many have old age behavioral changes and inhibitions (neurological changes in the brain), lack of empathic feelings, diminished motherly or fatherly feelings, survival stress (to get through the day), are flushing (or drinking) down bags of medications one-two-three times daily (think about taking these medications yourself; how would that make you feel?), and many -especially the less religious elders- have no perspective other than growing older, becoming more fragile or ill. Where there used to be a heaven and a reunion with those who passed River Styx earlier, now there is just the end of a life. Surely, we can feel the frosty, biting cold of those last wintry years.
“Now you have pulled a knife from your back, it is time for some healing thoughts. We will find these by close-reading the story of Pelops”.
LITERARY INSPIRATION
Let us now turn to fine art and literary inspiration for healing and nourishing our minds and souls. After that, I will conclude with practical and philosophical reflections. Greek mythology has it all; it never fails to morally support us with profound psychological insights and supportive philosophical thoughts. Parental disloyalty towards a child is narrated in the haunting story of Tantalus and Pelops.
Tantalus, 1588 Hendrick Goltzius and Cornelis Cornelisz van Haarlem. What you see Tantalus fall from the realms of the gods after manifesting his hubris. The technique that is used to show his fall from a position above the viewer is called foreshortening.
Tantalus was a son of Zeus and Plouto and as such he was welcomed for dinner at Zeus’ table at Olympus, the abode of the gods ad the site of the throne of Zeus.
Mount Olympus, Zeus’ palace.
There, he is said to have abused Zeus’ hospitality. Even more punishable, Tantalus offers his son, Pelops, as a sacrifice (gore warning; but happy ending). Tantalus cuts up Pelops, boils him, and serves him up as a banquet for the Olympian gods in order to test their omniscience. The gods immediately become aware of the gruesome nature of the menu. Goddess Clotho is quickly ordered by Zeus to bring the poor boy to life again. She collects the parts; together with Hephaestus and Demeter she revives Pelops. Pelops grows to be an extraordinarily handsome man.
The torments of Tantalus by Bernard Picart (1673-1733). We see here Tantalus reaching for overhanging fruits that he can’t reach and the waters will recede upon trying to quench thirst.
Tantalus is punished by standing in a pool of water with overhanging fruits; he cannot eat the fruits and he can not drink the water. Tantalus will forever feel deprived to fulfill his hunger and thirst. This has become to know a Tantalean punishment, referring to good things in life that are there to grab but forever elude our grasp. In English the word tantalize refers to an object of desire that is out of reach.
Practical & Philosophical Reflections
It is deeply tragic that sometimes a parent cuts up a child, be it metaphorical. Yet, the classical story of Pelops has a surprising happy ending. The child is revived by the loving and crafty care of a few Olympian gods and goddesses. The story could have had a bad ending with Pelops not being able to ‘put together again’. Like Humpty Dumpty who -despite ‘the work of all king’s horses and all king’s men- could not be put (back) together again’.
Humpty Dumpty sat on the wall Humpty Dumpty had a great fall All the king’s horses and all the king’s men Couldn’t put Humpty together again
Unlike Humpty Dumpty, the story of Tantalus describes in detail how Pelops is revived. Black-smith Hephaestus and motherly Demeter go through great lengths to resurrect Pelops and even forge a new shoulder made of ivory. The assembling process takes time, creativity, and resources which can be interpreted as ‘don’t expect this healing phase to be rushed’. This contrasts with the fate of Humpty Dumpty, standing symbol for a person or thing that is toppled over, broken, and irreparable. It stands to reason that by stressing that Pelops is brought back to life and becomes an remarkable handsome man, the hurt inflicted on a child by a parent can be turned around with the help of caring friends.
We have moved away from believing in Greek gods a long time ago. However, that should not inhibit us from replacing the omnipotent gods with loving and supportive friends. They will offer a shoulder to cry on and over time that helps to rebuild self-esteem. You have done nothing wrong. There are thousands, if not millions of Pelopses, well-meaning sons and daughters who have been scolded, undermined, or punished, even disinherited. It has hurt them and has damaged their ideas about their parent’s character.
Since I came to learn that at one time in your life you can become Pelops, I was told that siblings and caretakers should be wary and cautious of taking sides of their geriatric parent when they fall out with somebody. Don’t enable them; geriatric elders have certain age-related behavioral patterns. Like crabbiness, lack of empathy, anger and depression, and a feeling of having been robbed or having a feeling of being or going to be robbed. They are aware of their diminishing auditory, visual, kinetic, and cognitive abilities and this translates into the feeling of insecurity, misgivings, or even mistrust. Not being able to find something, like having lost their wallet or fountain pen, these surely have been stolen! No, they haven’t been stolen. Double check robbing stories, gossip, and avoid believing slander. Only those families whose children and caretakers take a united stand are able to navigate through the choppy waters of caring for an elderly parent.
Now that you know that you are not alone, Pelops does not need to be your middle name. Keep a healthy distance from your elderly parent if abuse happens or continues. I know about a geriatric nurse who advises family members not to visit their demented parents too often of even not at all because ‘They do not notice and it will hurt you’. These are sobering and somber thoughts, but one must be realistic.
I hope this blog-essay will help easing emotional hurt. Feel invited to add your advice or insights.
Paula majored in Philosophy at UU and UvA and won a few essay contests during her study. Paula worked as an editor and teacher in the Netherlands and abroad. For a decade she home educated her daughter in various countries. Currently, she lives in the Netherlands with her husband whilst her daughter studies abroad.
Ina, a former arts & crafts teacher, tells her story about a failed character assassination attempt. Her narrative does neither focus on the conflict that lies at the root of the bullying nor on the mortally malcontented being in need to vent their frustrations on her and her family. Instead Ina’s story centers around the notion of a failed attempt. Why did it fail? And how did it fail? What role did art play? Ina shares her experiences because she profoundly hopes that it might help others. ‘Even if it is one teenager or woman that is helped by my story, I am happy‘. Her story is illustrated by several artworks.
Medieval Illuminated Manuscript of a Phoenix burning and regenerating itself. Ina says that she adopted the phoenix as her role model. She got burned but regenerated herself.
Ina’s interview takes place at her studio. Her large work table and various artisan tools ignite a desire to become creative. Various unfinished projects give evidence of an overload of inspiration. Ina reluctantly revisits a time in her life in which she and her family received hate mail after hate mail. ‘Hateful emails seek a reaction, a response, they invite a counter attack’.
‘I read ‘Religion and Violence’ by historian René Girard when I was in my twenties and I was impressed by his theory of the Scapegoat Mechanism. How important a scapegoat is for social cohesion and how collectively accusing is more important than the substance. Thinking back of Girard’s theory, I concluded that -unluckily and apparently- it was my time in life to experience that mechanism first-hand. Scapegoating me was skillfully done with drip-feeding fabricated and exaggerating accusations that resulted in attacks on me’.
As soon as Ina realized that attempts to counterbalance false accusations didn’t help, that there was no real conversation, and that she wasn’t responsible for one other’s envy, she withdrew and refused to interact with those who made it their mission to bring her down. She hoped that the campaign against her would die down as soon as some fact-checking was done. It was not the accusations that hurt her (they were silly, made-up, and unfounded) but the fact that people were so willingly believing gossip by a formerly very clever instigator but now in his early stages of dementia. Ina knew therefore that trying to get into the good books of her aggressors was a Sisyphean task. Thus, Ina decided to wait it out but that didn’t work. Eventually, she had to hire a lawyer as a firewall. ‘Seal off your personal space, and resort to things that are soul nourishing, like studying, being creative, doing sports,’advises Ina.
‘Just because there is an attempt to harm your life, to bring you down, to harm your family, it does not imply that you should get emotionally involved. That said, hate-mails hurt no matter how utterly unfounded or dumb the content is. I noticed that I started to excuse myself and resorted to using disclaimers, I adopted an apologetic attitude. That was not good, so I changed that’.
‘I realized one has to live one’s own life, suffer one’s own sufferings, and rejoicing in one’s own luck and happiness. Not to say that I have adopted a hyper-individualized form of existence, instead, I am Aristotelian in believing that one’s telos, one’s full potential should be the focus of our lives in relation to others. We are inherently social beings. But you need to select carefully with whom you hang out. Relations are healthy when they support each other’s telos and growth, unhealthy when they hamper one’s telos. It was unfair to ask from me to absorb other people’s hate and discontentment. I decided not to become a sin-eater for envious others.
What does character assassination look like? What is its anatomy?
‘It is much more than an ordinary squabble or an unresolved conflict. Character assassination is a coordinated and prolonged effort to maliciously harm a person, to damage a person’s good reputation, and to destroy someone’s self esteem. I will not sum up the long list of areas of my life that were targeted but the vile accusations were emotive, paternalizing, and downright hateful. There was relentless criticism on almost every aspect of my life along with reproaches and objections. My education, my past, my choices, what I said-thought-felt, the way I looked… my husband, his work, his voluntary work, even my child, nothing got spared. It was frighteningly obsessive.
I noticed many characteristics of conspiracy thinking too: deep and unfounded suspicion, blaming without evidence, no fair hearing (jumping to conclusions or unsubstantiated ideas). The amount of emails describing me and my family as elitists and elite were significant. That word ‘elite’ was obsessively used. And of course, the ‘elite’ was to blame for ‘everything’.
It grew -even without me interacting- and after a few months the hate had accumulated in that I was a despicable and dangerous person. That I was dangerous made me almost laugh, had it not been so sad, because I am a boring, good citizen. And, also very conspiracy-like, I was to blame for everything that was wrong. My villains were so proud of echoing that I was the single cause of a layered, multi-faceted, and complex problem of having a geriatric parent suffering from the onset of dementia, showing paranoia, combativeness, lack of empathy, a need for quarreling, and manipulation. I was a called a witch! Such is the beautiful, simple world in which one woman causes the fall out of paradise.Ever since Eve!
‘Things completely spiraled out of control. It was frightening (and interesting) to see how every next email or letter was harsher in tone, more accusative. When I received a physical threat and a death-wish, I was advised to go to the police and a lawyer, which I did.
‘At that time, I came across ‘Tax Collectors’ by Reymerswale but I did not know the title of this artwork. It shows two tax collectors doing their paperwork. Despite their luxurious clothing and fine interior, the painter has deliberately made them look downright ugly. To me, this painting could have been titled ‘Two Hate Mail Writers’ because hate makes ugly’.
Later I read Julian Barnes’s ‘A Sense of an Ending’ in which a hate-mail plays a pivotal role, and the fall-out and regret it causes! It is a rule of thumb, isn’t it: never send an email (or letter) in an angry mood; start running or cleaning instead’.
Workshop of Marinus van Reymerswale Two Tax-Gatherers probably 1540.
‘I asked myself what in my life had been left untouched by hate. There was not much left. Others who received the same treatment by my foes said there was a need for hating, a need for venting conflict and anger, exactly like Girard had theorized. There was a need for a shared enemy to ease tensions. I had become a lightning rod for an unsolvable conflict and frustrations. I was deeply shocked.’
HOW TO DEAL WITH ATTEMPTS TO DESTROY YOU?
‘I suffered terribly. I have had moments wondering whether I could cope with all the anger directed at me. Hate is a terrible monster, like Cerberus (the three-headed dog of Greek myth guarding the entrance to the underworld). Envy is an even more devilish monster. You have to protect yourself against monsters. I was greatly supported by my husband and grown up child but I needed judicial help too. So, get help is number one.’
‘Number two: look at where the anger comes from. Is it justified? Does it come from a well-educated, well balanced person (or persons) who is open to mediation, respecting the choices you make in your life? Or from an ill person who benefits from blaming you for whatever. Try to stay unaffected. People willingly venting their unrestrained anger are harming themselves; it is like the trash taking itself out. So, get help and try to stay unaffected. That sounds contradictory, but it isn’t’.
Peasant Mother by David Alfaro Siqueiros. To Ina this painting shows there are times you feel surrounded by cacti.
Ina came across a painting of a mother with her child positioned between man-high saguaro cacti navigating her way through a barren and hostile landscape. She felt one with the painting. ‘This is a great expressionist painting. You immediately are drawn into the painting. The background shows a sunset but it looks like it is on fire, adding to the dramatic scene. I loved this painting because it so cleverly shows danger juxtaposing tenderness. I felt like the mother in this picture. But I also felt like the child, held by the protective arms of my family. As long as my family and I kept on walking, that landscape would change for the better’.
Phoenix Regenerating, Aberdeen University Library: showing a Phoenix after its regeneration.
‘During the prolonged attacks, I felt as if I had died a bit inside. A crisis can break or make you. If I died a bit inside, I decided that I would be like a phoenix, the mythological, immortal bird, who dies by flames and arises from its ashes. It took time, but I completed my regeneration. My health was restored (that took more than a year) and I felt good again. I adopted a Phoenix as my mascot. Its picture helped me to keep strongly focused on regeneration. That was very important to me’.
Will you forgive and what did you learn?
‘It would be a mistake to forgive because it was a well-planned and prolonged attack, not a faux pass. I decided against forgiving because I am setting an example to never allow emotional abuse’.
‘The long period of harassment happened during the pandemic. It was a shameful fact that in the Netherlands there was an increase of women and children’s abuse during the pandemic, especially during lock-downs. Apparently, some were in need to vent their boiled up anger. Perhaps it helped them to write hate mails, but they should have dealt with their frustrations differently’.
‘What I learned? I learned that people are shockingly easy to mobilize against another persons even by a demented parent classically falling prey to tearing his family apart due to old age character changes. All the instigator had to do is preying on feelings of envy or frustrations. Such is the tragic of dementia and its wide spread degeneration’.
DID THE HARM CAMPAIGN FAILED OR SUCCEEDED?
‘Shame withheld me to look for help. It is probably a womanly thing to react as a sin-eater. I felt ashamed being so hated. Shame is a very bad reaction to bullying (there is no way you have brought scapegoating onto yourself). It results in withdrawal and silence. What one needs is the opposite, to set up a robust defense. I remember my lawyer hearing my story and saying; ‘This is awful, let me take it from here and I’ll run this pass a criminal lawyer too because it is seriously bad’. The intense relief that caused! So, did the character assassination fail? Initially, no. It caused emotional and physical damage. Also, money was spent on judicial helpwhich better could have benefited the next generation. And I still keep my friends at an arm’s length, afraid they too pop out of Pandora’s box as hateful puppets. But overcoming shame and seeking help changed everything. I am absolutely not a fan of Nietzsche, but he is frequently quoted for having said that what doesn’t kill you, makes you stronger. In the end, the character assassination epically failed’.
Any advice for teenagers who get bullied, for women who become conduits of anger?
‘In teenage language? ‘Switch on your WTF-mode! Seek support NOW. You are worth living your cool life without the bullshit of others’. To adults, I advise the same, though in different wording: go to the police, get a good lawyer. Stop feeling shame, stop suffering; harassing behaviour by others is socially or judicially unacceptable. Seek help’.
–XXX–
THE MORAL OF THIS BLOG-POST? You have read this before on this website: We make art, appreciate art, and see our lives reflected in art. The great stories about the human predicament, whether Ancient Greek, Biblical or classical literary sources, or famous fine art paintings, all cover some part of our lives. Seek refuge in art and literature. Nourish your soul with literature and art. Art matters. Books matter. Art heals. We -humans- have created a huge reservoir of healing properties to be found in libraries, museums, galleries, studios, and bookshops. Use it; enjoy it.
Mindfuldrawing.com is owned by Paula Kuitenbrouwer who holds an MA degree in Philosophy. Paula’s pen and pencils are always fighting for her attention nevertheless they are best friends; Paula likes her art to be brainy and her essays to be artistic. Paula has an Etsy shop here. Her Instagram account serves as an online portfolio and is here. Contact Paula freely by email or a contact form for commissioned artwork.
May I kindly ask, have you appreciated this essay? My website by now tallies 180,000+ visits, with visitors reading an average of 2-3 pages. It is my wish to make my website more self-supporting. Should you have enjoyed this essay and website, please consider supporting my website that has fine art, spirituality, and nature appreciation at its heart.
Two (2) Marvellous Mandarin Duck Art Cards
Two marvellous Mandarin duck art cards, double folded and professionally printed. Come with matching envelopes. Free shipping. Lovely cards: one for keeping (framing?) and one for sending.
€18.00
A cup fo coffee for the author/artsist of this website.
Paula Kuitenbrouwer 