Transitioning my father from our home, to the hospital, and ultimately to long-term care hit us by surprise and we faced many challenges along the way. This is not a post about how to improve the system or a post about the challenges we faced. This is a post about the people who helped us along the way and who cared for my father.
Nearly 4 years ago, my father had a bad fall in his home. We discovered him in a state of delirium and without control over his body. Once at the hospital he was diagnosed with a bad case of the flu, but as the flu subsided, what we thought was just delirium turned out to be dementia. It came out of nowhere and caught us completely off-guard. Once he had recovered from the flu, we were told to take him home.
We were not ready. He was not the same and we were in no position to provide the 24 hour care my father needed. We were lost when the realization that he could not care for himself hit us. We broke down. Quietly a nurse approached and said “You don’t look ready to go home” and asked if we would like to speak with the hospital social worker and someone from the Community Care Access Centre (CCAC). We had no idea who these people were or what they could do for us, but we were desperate for help. Looking back I cannot express my gratitude enough to this nurse for just reaching out and taking a moment to ask us if we were okay.
Both the social worker and the woman from the CCAC took one look at my father (who had stripped down to nothing and was walking through the hospital hallway) and said, “no way are you leaving here today.” Our day started with overwhelming stress and anxiety, but the nurse, the CCAC case manager and the social worker all worked to relieve these feelings and walk us through the transition to long-term care. I will never forget the compassion these three showed us.
I quickly discovered that finding a long-term care home and getting my father placed was going to be a major challenge. We were in a hurry, so I arranged for a tour of a home with a wait list of only a couple months. It was a real shock to the system and it took some adjustment to accept that this might be in our future. The front lobby was also the first floor TV room and was filled with people in wheelchairs staring blankly at a small TV in the corner. The halls were brightly lit, but institutional, sterile and utilitarian. There was nothing welcoming, nothing comfortable and certainly nothing new. There were no couches, no carpets, nothing “soft” in the place. This was not the type of space you envision spending the remaining days or years of your life.
I quickly arranged for a tour of a newer facility with open spaces, carpeted floors, big couches, more privacy in shared rooms, and access to outdoor space even on the secure ward. The wait list was two years. We felt stuck. We needed to move quickly, but what we thought we wanted required a long wait.
Then things changed. I visited another home that was nothing special; same crowded halls, same institutional feeling, but I was greeted by an amazing woman. She wore her compassion on her sleeves and had a great sense of humour. She gave me a full tour of the facility and didn’t shy away from some of the home’s short-comings. The elevators barely worked, the hallways were cramped and crowded, there were no big comfortable places to sit, and the TV room was more of a place to sit rather than to enjoy entertainment. Despite these short-comings, she made it perfectly clear that if my dad was here, he would be taken care of. They offered compassion, not amenities. She immediately put me at ease and I trusted this home to care for my father. We were placed within weeks and moved my father in.
For the next three and a half years we developed strong relationships with various staff members from the receptionist to PSWs to nurses and administrative staff. It was never the fanciest place but, with only a few exceptions, my father was treated with compassion and was always taken care of. When given the chance to move my dad to a nicer, newer home, we all decided to stay where we were. The people caring for him were too good to leave and this was more important than how nice the home was.
As the end of his life approached, nurses and PSWs showed their support and in the end when we came to clear out his stuff, so many of the staff came over to hug my mom and show their respect and give their condolences. It was moving. It was almost hard to think we’d never see these people again; people who had cared so much for our family and always treated my father with dignity and respect.
Despite all of the problems our health care and long-term care systems face, despite all of the procedural challenges that exist, it is the people we encounter who make the experience what it is. Without these people and the compassion they show, I suspect it wouldn’t really matter how much we strive to improve the health care system.
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…what a beautiful and true story this was!
Craig…….
I appreciate the nature of your comments in terms of how you describe how both your father’s needs were met AND how you describe that your own needs were met.
The bulk of your comment reveals how good it feels when everyone has the awareness that they are ” cared” for in term of physical and emotional health.
Then there is the interpretation of the “person” in the life-changing category ( versus comforting alternative ) subjected to the common indignities of the aged and compounded by “relocation trauma” . In these instances their voice cannot be inserted by themselves ( from cognition disturbance ) or by observers. This may sound harsh in terms of ” observers” ( family and workers ) who tend to see and interpret using only indicators relevant to them.
To illustrate this best let me tell you a real life event.
Background
In the process of preparing myself to understand Long Term Care I had to first educate myself on how the public system works ( regulated) and how the private system (unregulated) works . I also knew the only way to make a difference would be to be in a top administrative position where key decisions were mine to make. Once this was accomplished I took the excellent parts from the regulated system ( diagnostic /evaluative tools ) and applied them in unregulated settings in terms of linking workload /caseload/ carepaths.
My motivation was a sustained level of shock ( in myself) that:
• the excellent standards and operating “tools” IN the regulated setting were not translated into high quality of life for the individual resident AND
• the absence of “tools” in the unregulated setting left the resident fully dependent on the ethic of the goodwill of the individual.
The “tools” protected the system ( public or private ) to forecast and contain costs. Yet there was NO internal staffing structure that looked beyond a “clinical” interpretation… on to consider what it takes to ensure the freedom and the rights of the individual “person” who lived there ( in either setting).
In order to prove the importance of the individual “person” I had the most freedom to do that in the unregulated setting.
The person:
Fred ( not his real name) entered a care setting for those who are fully dependent upon government funding. The only government contact was per diem payment and physical ( structural)standards. The property and buildings were privately owned (common in both regulated and unregulated care settings) and I had designed an assessment tool linking care need to work structures ( to ensure all workers had a balanced workload).
This enabled me to admit only one client in the care category Fred was in.
Fred arrived by ambulance, on oxygen, confused and unwilling to speak, in pyjamas ( which he apparently always wore ). He could not walk.
He was admitted under the oversight of a team:
• the healthcare coordinator ( an RPN linked to Public Health Nurse );
• the Community Outreach Coordinator ( linked inside and outside events for residents);
• Chaplin ;
• PSW type worker ( trained inhouse and staffed in a pattern where Fred always had the same 3 principle workers);
• a maintenance worker who volunteered to be on Fred’s team and befriend him. The physician link was through the visiting nurse.
Within 3 months Fred emerged from the carcass. The team facilitated this with each team member providing a different part giving service to Fred, the “person” ( not the client, resident, patient, customer)
Apparently Fred had been a school principal; an accomplished piano player; a political activist and writer. He often played piano in the main dining hall for Diners Club parties and their visiting guests . He met frequently with the local news editor.
Fred was 91….and he died within 6 months of his admission as a happy productive man.
The aftermath:
I told the team I was going to go house to house in the community with the Community Outreach Worker to determine if there was any interest in coming one day per week for a spa day ( bathe, hair, foot care, Diner’s club). It was amazing ( but not surprising) how frightened they were of any type of institution but it was equally apparent how dependent they were on needing staff for the services of an institution. The community was 28% Seniors. Home care services were overwhelmed.
What to do?
Time has passed and now society is discussing how to link “persons” inside institutions back into community.
Q- if community promotes a model or formula that focusses on containing costs how likely are they to reproduce the first meeting I had with Fred when he despaired of life itself?
Q- if the institution does not have a model of ” restoration to community living” with helps following whatever location that “person” is in….. how can that person remain independent and at low cost to the payor?
Q- if the “person” is not inside the preparation, planning, and performing ,of their own plan for their own life then how can they sustain the healthy independence /dependence balance to live in the community?
Q- if a “model” of service to the person is not applied universally then the individual may prosper in a serendipitous find…. and do the rest live on ?luck of the draw?
Q- if almost every hospital , LTC facility, retirement setting is ” privately owned ( but licensed by government at some level ) does the model have to include a way for the business side to prosper?
Summary
There are many more stories:
e.g. Frances ( not her real name ) who was slotted after surgery to be discharged to LTC ( versus retirement home) because the medical interpretation was she had dementia ( versus relocation trauma and impact of anesthesia) but much begging and an offer of free month’s rent on discharge proved she was capable of returning to her old self.
e.g Bill ( not his real name) who asked to enter a team construct answering Housing/ Care/ Financial/ Legal questions to fulfil his plan to independently care for his wife with dementia. His consults were effective and he made a plan that involved family and community service bundled to benefit each other and the person /client/ customer/ family member.( phased to accommodate change)
Q- Why aren’t these good experiences replicated /duplicated?
• Mostly because vulnerable people are more profitable if they remain vulnerable.
• Mostly because there has never been a wide thrust to contain costs with Carepaths ( 2 years to go) as an incentive.
• Mostly because families have no sense of alternatives because they do not presently exist ( and only “equivalents” are being discussed …whereas “ innovation” is the answer )
• Mostly because workers cannot control a caseload that lets them determine their earning power.
• Mostly because arenas of discussion are not educated or interested that all three sectors have to benefit by inclusion in the model… which is currently a medical focus with some attention to non-medical helps and little attention to ” social determinants”.
• Mostly because “psychosocial programs” are paid for from the “health funds” and “ social programs “ are not.
Q- what will be the result if we do not get it right this time as we look at the Health Links concept?
We will be clustered in either situation… either to prosper or not.
One cluster will not affect the other unless they are linked. One of our carepaths will be the Liverpool Pathway. All of our futures will gravitate toward it.
This is the exact social environment in 500 B.C. that Hippocrates lived in …… and chaos reigns since his oath has been abandoned : (
…….
Kitchener doc – You missed the whole point. Not that I am surprised.
The fact there wasn’t a doctor mentioned AT ALL speaks volumes … how sad indeed.
I just wanted to write a quick note to thank all of you for sharing your support and comments and to pick up on a couple of important ideas you have expressed.
I do admit that we ran into our fair share of challenges or challenging people along the way. But what I remember is those who supported us and those who made a positive difference in the transition and ultimately the long-term care experience. These are the people I wanted to write about.
Importantly, I do believe that improving the system is a worthy goal, but that doing so in a way that will better support the people who already are making such an important contribution and encouraging others to do the same, will have the biggest impact.
This was a wonderful piece. I too have just gone through a family healthcare crisis, and what I remember the most about the institutions is the staff – the great ones who supported us – and the ones that should re-think their careers. Makes me think we need to re-adjust our healthcare spending dollars from capital equipment to people!
Thank you Craig for sharing your story and your gratitude so openly. Homes that offer exemplary care are usually those where the leaders treat the staff and each other in the same manner. This article should be posted at the front doors of every long term care home in the country.
Thank you taking the time to write the story of your experience and providing some insight to others on what it is like to go through this life’s transition. I am an administrator in a LTC Home and what I have found is that it is the people – the nurses, the food and facility staff – working day to day with residents that bring respect and compassion to their work. They care and do what they can to make it a home like environment. They embrace the resident and families and serve to make it a better place.
Thank you for your encouraging words Craig, many PSW’s and RPN’s in long-term care get so little respect from family members. It is so wonderful to be acknowledged. :)
So sorry for your loss.
Happiness is never achieved by money or “things.” They are so unimportant.
With the state of DOCTORS in particular, I find them sorely lacking. Without the many more compassionate support workers hospitals would not exist, contrary to what doctors will say.
I fear more now as we aging baby boomers are going to be exposed to more and more doctors who are ONLY there for the money and NOT for love of medicine.
What do you think will happen when a doctor wants to take a vacation.
Sometimes I wonder where did their oaths go?
They certainly (most) are a self-centred and egotistical. I swear they don’t do an empathy test … they only do that for 10 year olds.
Doctors should have to re-educate themselves CONSTANTLY. Lose the “doctor” attitude and treat patients as people, not diseases!
I regret that you chose to take a beautiful moving story that had no mention of doctors and use it to grind your axe on physicians. How sad…
A wonderful commentary Craig, very reminiscent of my family’s experience with my mother.
Let me suggest part of the reason staff cared for your father is because you cared for him. Part of the reason staff respected your father is because you respected them. The staff felt a relationship with you because you created one with them.
In this age of systems thinking, measurement and production techniques (e.g. “lean”), it’s important to remember that health care is really about people. Caution is required in our enthusiasm for what is tangible and measurable as it can sometimes crowd out the ‘discretionary space’ for health care providers to be caring and respectful people.
There’s nothing about the “lean” methodology that loses sight of health care being about people. Even back in manufacturing, “lean” is a very humanistic approach to management. Management is there to support the employees, make sure they have the resources to do their job the right way, and to engage them in improvement. Lean organizations focus on the customer and their needs. In healthcare, that means the patient and their families.
Thank you so much for reminding me why I’m doing the work I am, and sharing some much-needed perspective, my friend.
Thank you for sharing your families very personal story Craig – well done.