slowing down

a Life in pictures

Warning - disturbing information this page exists because there is no other forum for this information... for it to go unsaid, would be to pretend it didn't matter

After nearly 40 years in St Albert, Inge and Des moved to a swank downtown Edmonton seniors' pad and they did okay for about five years but when Inge had so many strokes, with related dimentia, she could no longer make meaningful speech or any personal decisions she moved first to the hospital for three months, then to longterm care at the Citadel in St. Albert and then, in hopes of improving on that, to the Benevolence care centre in West Edmonton. Unfortunately, in both places she experienced treatment wildly unfit for frail humans.

Perhaps illegal, certainly immoral, amoral and consistently uncompassionate, the Alberta longterm healthcare system failed so completely as to resemble mediaeval conditions in modern middle class decor. On top of such a painful, debilitating, daily-deteriorating condition, Inge was systematically denied every single personal freedom left to her for the sake of the system, so it can 'serve' many. The system was not willing to leave her with a life worth living. But it would not let her completely die, either, until it was convenient. In the end, when she should have had palliative care, she was pretend-mistaken for covid and literally received nothing from the system in her greatest weeks of pain and need. Her last days finally allowed company, but little other comfort. So take-your-breath-away shocking it was and at the same time quite normal for the time and places.

This page discusses some of the things that happened to Inge 'in care,' a minute percentage. It is difficult to read. But Inge did her best to survive; she should be proud of her dignity and effort, facing indignity, loneliness and pain, not hiding her suffering away because it is distasteful. There are serious problems with how we as a society see, understand and behave toward the elderly; these problems transmute into a longterm care system involving the provincial government with/vs for-profit corporations who are so busy blaming each other for deficiencies (that they rarely admit to), that the frail humans, who are supposed to be at the centre of a patient-focused system, are actually lost in the fight; expendable foot soldiers, if you will. Like her father, a reluctant nazi footsoldier, Inge was lost in a battle that had little to do with her.

first big stroke

Inge's first big stroke landed her in hospital May 2015. For many days, maybe weeks she was force fed through a tube in her nose. Her arms and legs were tied to the bed. It was days before she was conscious and when she woke it was without language. She could still speak noises like words and make inflections so it sounded like she was talking but it was gibberish sprinkled with reflexive words and phrases. It would be months before she realized people were not understanding what she was saying. Imagine the blow of that knowledge in an imprisoned, dementia-adled brain of a once proud and skilled conversationalist. Imagine knowing it for four more years. Imagine the people in your every day have no idea of your loss, or care to discuss it with you?

first big stroke

Des was there

Des visited every day but one of the 90ish days she was in hospital. Sometimes he visited 2 or 3 times a day. He did nothing else, not even attend the programs for his dimensia. He was exhausted.

Des was there

Granddaughter visits

in care with granddaughter Paula and great granddaughter Nell. Grand daughter visits were the best medicine. Unfortunately they lived so far away they were not able to come often.

Granddaughter visits

with Des

ithe first of many rooms Inge would have in care over 5 years and 5 days

Second stroke

with Des

Second stroke

with Des

final. brief reprieve

with Des in the few weeks interlude between second and third strokes. She was in hospital and she couldn't really speak a language but she could communicate and, she was actually sort of happy, briefly, for the last time. Des perked up directly and started making plans for her to come home.

final. brief reprieve

Inge and Des make a break for it

while everyone else fusses and muddles with bags and nurses, Des and Inge hot foot it out of the ward for a drink in their high-rise pad.

Inge and Des make a break for it

back at the Churchill for a visit from care. Inge had such a good time she got up and danced

a surprise from a favourite

Nephew Andreas hopped on a plane with his daughters to spend a week visiting Inge after her second stroke. Here she is saying good bye to Andreas

a surprise from a favourite

the third big stroke - palliative care

after the 3rd big stroke Inge went to palliative care. Des prepared to loose her.

the third big stroke - palliative care

a fond good bye

with Johnny McDonald in palliative care. Johnny came to say good bye because they were old friends and he had been so touched when Inge visited his wife under similar conditions.

a fond good bye

with Des in palliative care

after her third stroke Inge thrashed around a lot. She no control and no sense of her movements

with Des in palliative care

180 degree turn on the rollercoaster

Des stayed with Inge 15 - 20 hours a day in palliative care. One night he went home and returned the following day to find her in regular care again. Staff did not explain. Instead they told him she'd be going to longterm care when she was sufficiently recovered. It was as if the hospital had dimensia and had forgotten that Inge was supposedly terminal. Although he could see little improvement in her condition he was glad the certainty of imminent death had somehow magically lifted.

180 degree turn on the rollercoaster

coming out of palliative care 2015 Even though Inge had not returned in person, her body fought... programmed to survive

with the help of loved ones

with Granddaughter Steph and Barbara who both mercifully visited as Inge was re-emerging after her third stroke

with the help of loved ones

with granddaughter Steph

with son in law Brian

coming back to life, but not really

day by day, after she emerged from palliative care, shadows of Inge returned behind her eyes. According to her doctor, she had a phenomenal ability to reabsorb the blood which had filled every lobe and nearly every cavity of her head. Unfortunately they could do nothing about the damage caused by the pressure and infiltration of her brain. The damage was profound. The Inge that existed for 79 years was gone. In her place, a gossamer filament of herself - for the next almost 5 years - sometimes visible... often overlaid with whatever unwelcome physical disabilities/personality traits were generated by the cumulatively disabling diseases slowly consuming all the cells of her body as well as the physical/mental/emotional effects/scars from the treatment still to come, 'in care.'

coming back to life, but not really

move to longterm care; the Citadel in St Albert, Alberta

in Inge's first room at the Citadel she is a placed with a woman who calls for help hour after hour, through the day. She endured this for weeks while she waited for a private room.

move to longterm care; the Citadel in St Albert, Alberta

with Des

the pain of hope

Des kept waiting for the real Inge to come back. For a long time he was convinced she would get better - that some day he would have a real conversation with her again. He would tell her this. Often she would understand and become hopeful. Often she she would understand as he did not, that this would never happen and then she was very quietly, very sad.

the pain of hope

walking with Des

In the beginning she improved enough to shadow her former self. She could hold the cards and put one down but was unable to understand the significance of numbers or suits while being convinced she was playing like always. Des was also convinced but couldn't understand why her play was so weird.

good days

especially at the beginning Inge had some days where she was understanding who and where she was and made enormous effort to communicate. You could play 20 questions with her to reveal what she was thinking and how she was feeling. This was a heartbreaking routine though as it invariably lead to her asking, when she would get better, when she would go home, if she could sleep away the pain and loneliness...

good days

a stint in rehab

As Inge recovered/changed more and more after her stroke, she became 'busy' Like her normal inquisitive, active self to the power of 10, then 100, then 1000. Even strapped into the obligatory wheelchair she went everywhere she could get. Wherever there were people she wanted to be involved. She wanted to look at the things that belonged to other people that were in rooms that looked identical to her own, which she often couldn't find. She was not very aggressive, not angry, not forceful with other people. But she couldn't be controlled/mollified by the staff - only supervised, and they had little resources for this so they hired a company to supervise her until they could get her into drug therapy at the Glenrose rehab hospital.

a stint in rehab

mysteriously kicked out of rehab

Nurses at the Glenrose indicated that Inge was doing well in drug therapy for her 'busyness' even though they were experimenting with different drugs and dosages. Des was pleased because her behaviours were more manageable and she seemed to acknowledge him more as a person. Shortly after one nurse explained that Inge was such a responsive patient and that she would likely be staying for a while longer, another nurse left a message on Des' answering machine saying since Inge was gone he should come and get her stuff. He thought she had died and came apart. Later it was revealed that they had shipped her back to the Citadel for some mysterious reason that was never shared. 'Oh, sorry. That was not our intention.' was the only response, and only when questioned. For Des it seemed as incomprehensible as the dimensia.

mysteriously kicked out of rehab

dancing days before the broken hip

back to hospital with broken hip

a couple of days before Inge fell and broke her hip getting up to go to the bathroom in the night by herself, Des had a meeting with her doctor saying Inge was at risk of falling in the night and proposed five ways to prevent this. The doctor agreed to none but said he would consider leaving the light on, as if that would solve the problem that she was so frail and confused that she needed constant supervision and bracing when standing. Since, during the day, they strapped her into the wheelchair to avoid falls and only let her out when there were TWO aids to walk with her. Family members were not considered adequate. Yet this trouble was to somehow to vanish in the night when, under no circumstances would staff ever have time to take Inge to the bathroom.

back to hospital with broken hip

roller coaster, again

As with the Glenrose, a nurse said that after the resetting of her hip she would need daily physical therapy and that they could keep her in hospital to do that. Again, without warning or consultation she was transferred back to the Citadel.

roller coaster, again

no more walking

after the broken hip in Oct 2015 was not rehabilitated (as prescribed by the treating doctor, due to 'lack of funds for physiotherapy' Inge did not walk again, making her one of an alarmingly high statistic that raises no alarms in longterm care. They are blase on the subject. The condition you see here, known as dropfoot can be ameliorated, but it wasn't addressed in any way, causing other problems beyond not being able to walk. But this was good news for the facility because the immobility of residents makes them easier to control. They stay where they are put. Imagine what this means to a person when they are suddenly no longer able to choose where and when to sit, to eat, watch television, move their bowels...

no more walking

Inge was not incontinent at this time but she started to wear diapers because it was inconvenient to take her to the bathroom. So she was consious that she was peeing her pants, wanted to do something about but had to sit often hours in a diaper with urine in it until it was considered full enough and two people had time enough to change her. These freedoms were taken from her without ever explaining why or even that they were being taken.

with granddaughter steph

Des worked hard to entertain Inge

Des did show and tell about four times a week, bringing photographs to share, games to play, books to read to her, operas, movies and music, but they could only sustain it for so long as both their conditions continued to worsen and they were never supported in these activities by staff - and as these activities were the things that connected her to herself, much of the remainder of her person sort of melted away... and this, in turn, affected her physical condition. Des' deterioration was also hastened as he poured more of his dwindling self into making her feel better, which he begged the universe to make possible

Des worked hard to entertain Inge

with granddaughter Carolyn

with Des at Christmas, 2016

The immobility lead to other health issues. Also the doctor theorized that she may have continued to have more strokes. Predictions became more dire but Inge beat most odds... the comeback queen. But less herself in each comeback, and the pains and humuliations in between, unspeakable.

with Des at Christmas, 2016

birthday, Jan 2017 with Lubbers family

another twist on the rollercoaster

at first the Glenrose drugs made Inge sleepy and unresponsive - for Des they had drained the last of her away - so after a while they pulled them back and for a few weeks Inge enjoyed an often untroubled alertness and better rudimentary understandings. Until then came the involuntary movements/tremors/etc...

another twist on the rollercoaster

going to the mall

early 2016 Inge was still able to ride in the disabled bus to the mall and other places. It was okay, but it had its limits as Inge's eating skills had deteriorated so she could barely hold utensils. Despite her best efforts food got on her face, hands and clothes so she had to wear a huge bib. But she did it, and that was supposedly a victory. You could hear hear her former self give an audible snort at that one.

going to the mall

always thirsty

in the beginning she could hold a glass herself, if you gave it to her carefully. And she was a big drinker, coffee especially, but also juice and wine. May have contributed to her still lovely complexion. But now she couldn't get it or ask for it, she had to wait until someone thought about it without a mandated prompt, but this almost never happened. She could stare at them with a pleading look every time they came in the room but they didn't notice. Her body was like a prison and the staff, oblivious guards with god complexes who almost never learned to say her foreign name...

always thirsty

a new wheel chair

one of many new wheelchairs to accommodate rapidly paced immobility that set in after broken hip. Almost every one of them obtained through battle or begging

a new wheel chair

tragedy a deux

Des took every blow upon her, as if own. His general disposition was distraught

tragedy a deux

seeing old friends

a special trip to the faculty club to see the OGs

seeing old friends

at the Fcaulty Club with Des

On campus

on campus with Des and his private caregivers. Inge's caregivers did not ever get around to taking her here. The arrangements to get her here were nuts.

On campus

with Des

Music made the difference

Inge was a full member in good standing in the cult of opera. She had lived and breathed it. So much a part of her that when you played it in those darkest of days, when she still understood her predicament and could barely shake out a response to anything, she could hum, sometimes sing her beloved operas in two languages. It was remarkable and often she smiled. It was a tonic, an elixor. Yet it was impossible to get anyone employed at the facility to recognize this haven for her or play an opera CD provided on the player provided. Des played almost exclusively Mozart on those long afternoons when he sat there holding her shaking hand.

Music made the difference

one of many summer walks with Des

a rest home?

The first few weeks of incarceration Inge shared a room with a woman who called out for help every few minutes of her waking hours. That these pleas went permanently unanswered is one kind of hell, sitting across from it, unable to say or do anything about it, day after day, is another kind. Later Inge shared a wall with a woman who was near death for several weeks, during a staffing shortage and listened helplessly to countless hours, daily, to low, throaty moaning, gurgling and begging' with little/no tending. On the weekends you could go many hours without seeing a single staff member. The facility director helpfully explained that the woman might not have been in pain. Some people just make sounds like that. For her last two years at the Benevolence Inge was the only resident to share a wall with a woman who yelled for help, every few minutes, all night long. So loud and forceful was her cry it was as if she were sitting on Inge's bed. In the dining room that shares the opposite wall of the yelling lady, with similar acoustics, there was nary a staff member to be found, all through the night. Inge was the perfect person to pair with people whose maybe pain and maybe anguish disturb others because she literally couldn't complain and you'd have to be there alot to understand how long these situations continue - but even if you were, as Des was, and if even if you said anything about it, like he did, the response was the same; nothing.

a rest home?

with Des

Christmas 2017

Brithday Jan 1, 2018

the diseases are crippling but the facility admin is worse

In addition to her involuntary movement and crippling atrophy that ran unchecked without meaningful physiotherapy or any other preventative measure, as with every other resident - , there were many other deficencies/incompetantcies/philosophical differences/hostilities/etc. like an elaborate shell game of broken promises, pass the buck, that's not my department, that's not how we work, we can't deal with her like this; she must have drugs, we don't think she has that much pain, we don't have the staff to do that, there are so few programs for her level of disability, I don't know her, I'm only here for a couple of days, that's not my shift, we don't have time, you'll have to talk to someone who isn't me and won't be here for a while and likely won't answer your question anyway, etc, etc. There were as many deflections and redirections as Inge had symptoms... an endless series of hoops and road blocks to get even the most minor accommodations. It had the appearance of a campaign to thwart Inge from having quality of life by gas-lighting her guardians, distraction so other activities/treatments pass unnoticed

the diseases are crippling but the facility admin is worse

Inge's last trip to UofA

with Des

She was constantly wriggling and shaking. It took a while to sort out what she was doing and that much of her movement was involuntary and then relate it back to the lowering of the Glenrose drugs. And all the while her body in rapid atrophy. In combination, the movement and the atrophy were devastating. On several occasions she indicated as clearly as possible in her state that she wanted to die - or at least to sleep away her time. Here Des is trying to massage her oft-jiggling leg. The right one was the worst, like it was trying to escape from her body.

zest for life

as her ability to hold utensils deteriorated, Inge also failed the swallowing test, this news delivered as if she should have studied harder. The result was a puree diet, as pictured here. Also, it was invariably cold and by this time must be fed to her like a cool gelatinous soup. Imagine this for a woman who was queen of the dinner party? But she ate it... what choice? an autonomic response likely. Ironically staff pointed to Inge's food intake as the one remaining indicator of what they felt was her desire to live - as if they had not witnessed the opposite

zest for life

after alot of shaking the doctor agreed to increase the Glenrose drugs again, slowly to stop the movement. Des was prepared for alertness to drop off, which it did. But at least she could be somewhat calm again. However, the battle to do this was draining. It was daunting to think of repeating this battle every time Inge's deterioration called for another compassionate accomodation.

wounds

Inge sustained countless, bumbs, bruises, laserations, infections, pressure sores, friction wounds and much more, like her ear, which was almost permantently folded over because her atrophy was greater on the right side so she couldn't stop herself from crushing her right ear and no one even noticed until it was misshapen. The people who caused/allowed/didn't properly treat/claimed insufficient funding/allowed staffing levels to fall short/etc were the same people who would not entertain conversations about atrophy, the pain of atrophy, the existential pain of imprisonment in one's own body, not being able to understand the ESL aids, being spoken to as if a child or chattel, etc etc etc

wounds

Inge's armpit. There wasn't time to keep it moisture free to stop it getting raw like this.

blame the government

despite very good, albeit rare, examples of decent public longterm care in Alberta and the rest of the country,(which operate under the same system with same funding) a standard response from staff when asked for different, more or better treatment for loved ones is 'write to your MLA,' presumably to imply that there is no funding for your request, which, when your loved one is suffering, is about as useful as a coupon for 10% off cookware to a starving person. Also, it is well known that any change that would come through government would be long and arduous and most people don't have the energy to do it, probably your loved one would be long dead anyway..So really what we're saying is there is no room for change. We are not interested in any suggestions, cost free or otherwise to improve your wife's life. It is against the rules to do things differently. But, if we say 'write your MLA,' we don't have to say No. We're not helping and we won't consider it. We are a profit driven organization and your wife does not exceed our standards for suffering. There is nothing more for her. While funding levels from the province are in question, likely the bigger question is how do facilities like these receive provincial approval to operate and provincial funding with little/no actual oversight, relying on exhausted caregivers to finally make enough noise in the media that the issue can no longer be ignored. People are making some noise about this now, but it remains to be seen if our elderly will ever realize any kindnesses as a result.

blame the government

diminishing returns

As Inge's condition got worse and months turned to years the early motivations to visit seemed to wear off. People were less and less comfortable as Inge's condition was less and less manageable, making obvious the egregious and diminishing care . And folks get worn out and fall sick themselves, affecting visits and care. So the reward for persevering so long in such a tortured existence is less and less of everything, until there is almost nothing... this is not written on her death certificate, but the absence of living... the absence of support for her life, in a way of speaking, was likely her cause of death. The facilities ignored Inge's right to comfort care only and saved her life with pharma and then facilitated her death through neglect and incompetence. It is difficult to tell if this callousness is deliberate or just ingrained thoughtless oversight. Either way, shameful.

diminishing returns

indignities

while at the citadel Inge suffered physically, emotionally and mentally. Constantly. (People all around her, the same; suffering at many different volumes.) It would be impossible to recount all the indignities here. It took a 25,000 word complaint to capture the highlights, but there are a couple of anecdotes that can give you an idea of the struggles in Inge's daily life at the citadel: 1. supposedly to treat a bedsore at the base of Inge's spine an aid? routinely left her lying on her wound but pulled her pants down to her knees and pulled the covers off exposing Inge to any onlookers -- leaving her aware of it and powerless to do anything about it. 2. Inge was found alone many times, and sometimes nude, with a male resident. This information was presented as if Inge was in a confused romance rather than a victim of sexual assault.Thoughtlessly the information was said to her husband, with humour, as if it were just another everyday occurrence. They did not seem to notice how it devastated him. It was later revealed that several women in the facility had similar experiences and were very uncomfortable around him and so he had been placed at the end of the hall, farthest away from the nursing station, across the hall from Inge.

indignities

what is pain?

it depends on who you talk to. Generally understanding of and responses to physical pain tend to be different in the longterm care facilities than the rest of the health care system. Individuals from Alberta Health explained that pain of people with impaired brain function is not well understood, but they are coming to know that pain can be present even if the person in pain does not make the standard indications - because the signals in their brain become confused. For example, Inge ate an entire dinner while sitting with a 5 inch pieice of flesh on the back of her upper her arm firmly pinched in the metal hinge of her wheel chair. There was little acknowledgement that this had happened, no apology and no attempt to ask Inge if it hurt. She also had bone cancer and several other ailments that are traditionally painful. It wasn't that she didn't make signs of pain, it just wasn't consistent and you had to know her and you had to be in the room longer than 10 minutes a week to get a feeling for it. However, there was never a nurse to do this. Consequently all Inge could get for years, unless they happened on her in a rare fit of recognizable pain, was tylenol, which was administered every day, regardless. The way they decided if she was in pain was to ask her and the hundreds of occasions when she could not reply it was taken as a no. By not using more effective pain-management they could keep her alert as possible for the thousands of empty hours she was sentenced to lie alone without company, entertainment or the ability to move her own body, that was jiggling on its own. Existential pain was not addressed, at all, in any way, ever. Raising this topic in the facilities elicited either poorly concealed eye rolls or blank stares leading perplexed loved ones to believe that the mental anguish of people like Inge is not a consideration in their treatment.

what is pain?

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oh so Inge
witticisms and aphorisms of Inge's beloved Jane Austen

My idea of good company… Is the company of clever, well-informed people, who have a great deal of conversation; that is what I call good company.
Jane Austen

Nothing ever fatigues me, but doing what I do not like.
Jane Austen

Arriving late was a way saying that your own time was more valuable than the time of the person who waited for you.
Jane Austen

There is a stubbornness about me that never can bear to be frightened at the will of others. My courage always rises at every attempt to intimidate me.
Jane Austen

I wish, as well as everybody else, to be perfectly happy; but, like everybody else, it must be in my own way.
Jane Austen, Sense and sensibility

I declare after all there is no enjoyment like reading!
Jane Austen

My good opinion, once lost is lost forever.
Jane Austen, Pride and Prejudice

I always deserve the best treatment because I never put up with any other.
Jane Austen, Emma

Laugh as much as you choose , but you will not laugh me out of my opinion.
Jane Austen, Pride and Prejudice

Ah, there is nothing like staying at home, for real comfort.
Jane Austen

but for my own part, if a book is well written, I always find it too short.
Jane Austen