Sickness mars the landscape of one’s life. It mars the landscape of everyone close to the ill person. Disease knows no limits. Disease is not kind. It sets in and takes hold of everything and everyone, takes hold and takes hostage until all resources are depleted. Emotional reserves are drained. Spiritual values are questioned as the ethics and ramifications of medical decisions are examined. Financial reserves are drained. Friendships are strained, torn apart and broken. Career opportunities are washed away as the tide of sickness envelopes a loved one.
All this caretaking and caregiving would be worth it if a person healed. It can and does happen. Everything is possible, but not everything is probable. Sometimes the deck of sickness is stacked so high nothing levels it. Not all the fresh pressed organic juices. Not the herbs. Not the home cooked meals. Not even prayers that seem to fall on silent angelic ears. Nothing keeps disease of this magnitude from engulfing everything and everyone around it. Not even God.
I know this first-hand because I have been engulfed by my sister’s sickness. Like my mother, I decided to keep my sister at home. This decision was based on that decision, a decision with my father. Maybe not the best way to make decisions. I never regretted placing my father in long-term care. But I did regret leaving him in long-term care long term where the care was occasionally questionable.
There are always gaps in medical facilities despite well-meaning intentions. It’s just that there are no gaps in illness. There are no gaps in vulnerability. Those in need of care are already compromised and can never have care compromised. But it is a system of compromises. Financially based compromises leave facilities short-staffed. One staff for 15 residents impacts quality care. Scheduling and organizational short-comings also short-change patients.
During the last few visits with my father, bruises covered his face. Jokingly, I asked whether he resumed his boxing career. I never expected the answer I received. But his words ring in my ears, ring in my heart, ring over a call bell he never rang. “Dale, I don’t bother ringing the call bell because, by the time they answer, I already wet myself. When nature calls, I crawl. Last time, I fell and knocked myself out”.
I, too, am knocked out from looking at the bruises on this proud World War II veteran. Trenches of war are not unlike trenches of sickness. I left him in the trenches, left him to fend for himself. I let understaffed facilities meet needs that are impossible to meet. I reasoned “My Dad is rational and my sister isn’t so I diverted my attention to her”. I thought my sister was closer to death, but one never knows whom God will call home. He called my Dad and left my sister.
Like many, I wish I could turn back the clock of time. But none of us can, so I move ahead, trying to make the best decisions for my sister. Past mistakes are a gauge where it is best not to walk. But where to walk in a system fraught with hurdles? One simple decision unleashes an avalanche of repercussions. Not so simple. Last month the seams of a seamless decision ripped apart instantaneously. After weighing the odds, a Foley catheter seemed viable. The reasoning was flawless, an antidote to my sister’s flawed care plan. Traffic in our -home would be minimized. A peaceful environment would promote healing. My sister would not be probed and prodded three times daily. But oddly medical decisions are not straightforward games with guaranteed results. Wishful this. Wishful that, like wishing on a nonexistent star so far out of sight I could no longer see any stars at all.
Knowingly, I went against medical recommendations from Toronto Western Hospital. Specialists impressed medical research into my mind. ”Straight catheterization reduces the risk of infection”. A person of sound mind would not go against sound medical advice. But all the leading edge research was light years away from what was happening in our hospital-home. Our lives were precariously juxtaposed on the crooked road of home health care in the north.
The results of the decision spoke the truth as an avalanche of issues smacked us in the face. The peaceful environment envisioned transformed into whirlwind of turmoil superimposed on mayhem. One worker said “Changing the night bag to a leg bag is a specialized service. I have not been signed off”. The next worker debated “I can change the bag but it must be rinsed with vinegar”. The third worker commented “Never use vinegar only hot water because vinegar could back up and create discomfort”. The fifth and final worker strongly advised “Use only sterile water”. I looked down at my hands, dirty from the decision. I looked down at my feet standing in hot water as I breathed in the acrid smell of vinegar. I grabbed the bag of urine, emptied it, flushed it away and wished I could flush all this sickness away.
More than anything, I wish my sister would get well so this onslaught of questionable homecare would end. But it does not end and the next day is worse. My 92 year old mother wades through urine, the Foley flipped or defective. I flip as workers debate about the clean-up. The hot water of home health care burns my mother’s legs and she cannot get out despite her efforts. Neither can my sister. My sister can’t even walk, can’t even talk. Moans replace laughter as we decipher whether her cries signal emotional or physical pain. Maybe both. It is a calculated guess but lately my calculations have been off. Most stuck in the home health quagmire would be unable to add or subtract under all this misery.
Christmas Eve I listen to my 92 year old mother cry. I don’t bother to cry. I gave that luxury up a long time ago. No time for tears. I must work to keep this failing system from breaking us apart. But it has already broken us apart and my efforts are for naught. Deep down I know this, the veil of denial cracked a long time ago. I know this because my mother and I are the best of friends, but lately we argue. We are at the apex of caregiver burnout, stress exacting a toll we never anticipated paying. We both know these may be our final moments. We both know it is important to let nothing destroy our bond, but strokes of strain are painted across the canvass of our hearts, the canvas of our home. It is no longer a home. It is a place littered with heartache and hospital equipment.
There is no time to think, no time to breathe, so I make more mistakes under the crushing hands of stress. Daily I wade through my mistakes and the mistakes of others in a mistaken system. Routines ward off the pain. As night falls, I pull out the vacuum to suck up all the mistakes so I can sleep with a clear conscience. Lately, I haven’t bothered, defense mechanisms an ineffectual luxury.
Where this and where that? Where to go from here? Where to walk in a system fraught with hurdles where simple decisions create gusts of hurricane winds? Nothing is simple in homecare. It could be, but it isn’t. I hang onto the wings of hope, knowing small changes in home care could produce big results. Research supports that remaining in the home setting increases life expectancy. But the supports to support these research findings are lacking. January 9th a nurse arrived to straight catheterize my sister, could not do it, so left her with a full bladder.
Efficiency is the new norm where there is no time to care for increasing numbers of the sick. Efficiency equals mechanization, reducing the ill to objects where tasks are performed quicker than quick. After all, time is money and money is time. I watch the rat race where my sister is bathed in 15 minutes. The well-informed know “this soap is so gentle there no need to rinse it from the skin”. I don’t know about you, but I don’t like soap on my skin. We are so efficient we are becoming careless and inefficient. Efficiency saves dollars but costs quality care.
It takes time to treat the whole person, time to provide quality care. Remembering a person is always present in a body improves care. Being present is the best present an ill person could receive. Patient-centered care means knowing a person’s story, knowing the person inside-out not outside-in. If there were time, it could be used to whisper healing messages into my sister’s ear, sing or play music. One worker does. Most don’t. Maybe they fear supervisors may view the slow touch of caregiving as superfluous. But washing despair from the psyche is equally as important as washing germs from the body.
Speaking of efficiency, it is not uncommon for workers to arrive late, leave early or not arrive at all. The solution is simple. Arrive and leave on time. Work the entire shift. Lives would be enhanced including workers who would feel satisfaction from doing satisfying work. Yesterday, an efficient worker left 10 minutes early. Today, two workers left 20 minutes early. Not a huge amount of time. But long enough to give my sister juice as she cannot hold a cup any longer. One worker did stay behind, invested in quality care. Thankfully, she is slow and inefficient. Efficiency is no longer desired, not by us, not in our home. It is as outdated and outmoded as my sister’s sick body.
The irony is that amazing workers step foot into our home on a daily basis, many not doing amazing work. I stand back and reflect on the reasons, wondering whether they are fully trained, underpaid, overworked, or undervalued. Probably all of these. Answers from fed-up workers who do not have time to feed my sister filter in. A distraught worker steps into our home, eyes bulging with tears he is intent on hiding. The helper needs help. From what I can piece together in this piece-meal system is that he walked into some sort of home hellish nightmare where he felt uninformed and ill-prepared. Continuity in care is chaotic. Different workers come and go into the same homes routinely which makes no sense. Sending the same workers into the same homes makes sense. Relationships with the ill would be strengthened, conducive to healing. People at home would not have to repeatedly repeat the location of supplies, the location of equipment, small things which turn into big irritations. It would be a win-win. Workers who have no idea where they are going and what they are supposed to be doing is not ideal. But it is the real reality, a lose-lose.
The distressed worker was falling apart in this fallen and broken system. He is not alone. The next worker shares “I am trying to get fired”. I cannot comprehend the logic of this illogical goal so I listen and listen. “I had to leave a patient with food half-eaten because I ran out of time so had to run to the next client. They are cutting time while adding more tasks”. The third worker informed me “This is a disorganized company with a high turnover rate”. It is a for profit disorganized organization from what I can gather. I don’t know whether this is factual, but I am turning over from listening. Workers are starting to sound like us, torn up from home health care. It’s as if I am a sounding board, listening to the echoes of my own litany of complaints.
I put on my cheerleader hat, impressing the importance of advocacy, of speaking the truth, of bringing issues to the forefront, into the public eye so they can be rectified and improved. I suggest it can be done politely, without offense or blame. Workers remain steadfast and unconvinced. “The truth is ugly. The system is flawed. Go to the MPP but don’t use my name”. Everyone is afraid to rock the rocking boat but truth is sacrosanct. Someone has to speak up, someone has to eradicate the systemic sickness creeping into home health care. Ugly gaps that are wreaking havoc can be transformed into a beautiful experience.
On a given day, I question what I am saving. Euthanasia flies into the forefront of my mind, but I know where I stand. “I do not believe in ending life. I do not even believe in ending it for pets. I believe God gives and takes life”. An extremist of sorts. But on the other end of the extreme continuum, I am allowing invasive procedures and medication that extend life. Is this right? I am not so certain. A quality life is worthwhile. But my sister has no quality. She loved swimming but now health care workers question whether a bath is safe. It isn’t, but I miss watching bubbles of happiness float around her as a mechanical lift hovers her body over a tub. I question whether she misses bathing. Disease does this, strips away everything that was once sacred, everything that was once important.
Prolonging life was motivated by medical advances. If we buy time, innovative treatments may restore health. I had noble intentions of stem cell treatment for my sister. She was accepted for treatment last year and I was gathering funds to fly her to the US. In the interim, I did everything to strengthen her and purge the poisons. Protein powder. Oil of oregano. Homemade soup. Prayer. She became sicker. Instead of taking her for stem cells with the promise of a fresh start, with the promise of a new life, I spent most of my time in hospitals watching her struggle as I struggled with my conscience. “Why did I wait so long to take her?” Time does not wait for noble dreams. Not always. Not for my sister.
I want to stop it, but one cannot stop disease. Only healing will get her out of this mess of sickness and home health care. There is no other exist. But my sister is not getting better. She is getting sicker. I stand by helplessly, holding my breath, waiting for some sort of sign from the heavens. It is then that the rain of sadness falls, into our home, into my elderly mother’s heart, over my sister, washing us. I do nothing but watch, my skin feeling the sting from the raindrops of sadness. I am not different than other people who are caring for ill loved ones. I imagine we are all standing silently trying to stop what cannot be stopped. I imagine we all need more support, financially, emotionally and physically.
The next day showers are cancelled. Two caregivers sponge my sister in bed. Last week seems like decades ago when the agency sent a red flag of caution. “Relocating your sister to a quieter place is not wise because you need the lift installed in your home to bathe her”. I look up at the motionless lift and down at my ill-fated Foley catheter decision. I regret the Foley. I regret that the supervisor cancelled showers without informing us. I wish they told us beforehand not after hand. Implications of simple decisions are not so simple to swallow. My burnt out eyes still see and my heart still hears as two healthcare workers lock arms across their chest. The body language barricade shuts down communication. Maybe they sense the regret lurking inside of me. I throw out all my former regrets, only regretting that they didn’t listen to my regretful decision for which I am responsible. Communication is key but today it fell off the health care key chain. I would pick it up, but there is no time.
I commend health care professionals who enter professions with the desire to care for those needing assistance. Some enter with high callings. Most are well meaning. Then how does it end up going in the wrong direction? Speaking of the lift installed last winter. Six months later, an untrained worker stepped into our home, reminding us “I am not signed off to use a lift”. She waited for another worker to arrive who had been signed off. The second worker was not signed off either. No-one can use a lift unless they are signed off. Can’t they send signed off workers? I watch workers standing in the kitchen not working because they are trying to follow regulations. Not working isn’t working, not for us, because the work piles up when sickness piles up.
There is always some issue like this. Sometimes one worker arrives at 7:30 staring at the kitchen ceiling waiting for the second worker who arrives at 8:00 p.m. My sister is total care and needs two workers to arrive and leave at the same time. This is too much to expect. It is also expecting too much for workers to be trained. One shared “I am afraid she will choke if I feed her”. Guess the other option is starvation.
I remind myself of workers who are like liquid gold. Instead of cutting corners, they do extras, stay an extra 10 minutes or massage my sister’s feet, the liquid gold of health care spilling onto my hands and into my heart. These are the same workers expressing concerns that the care for my sister is questionable, that the equipment for my sister is not safe. “Your sister needs a new wheelchair”. Your sister needs a lounge chair”. “Your sister needs a lift in the living room”. They want to report it but are concerned that the concerns may compromise their career choices. I understand. The squeaky wheel gets the grease, but who wants grease splattered all over their face. Not them. Not me.
As I was making breakfast for my sister, I looked over my shoulder at my mother’s crippled hands. If there are any heroes in a story it is my 92 year old mother who is convinced she can and will care for her daughter and my sister. It is just that my mother also needs help so I suggested a worker add a scoop of protein into the blender. The worker replied “This is considered meal preparation”. My mother looked up at me in defiance as if to say “I told you so”. She knew the ropes better than I, ropes of home care that had hurt her and hung her long ago. I wondered if she would be this sick if she didn’t have all this home care that crippled her heart to match the wardrobe of her crippled hands.
Meal preparation approval means calling the system, waiting for days, waiting for weeks, waiting for months or waiting for never to arrive. It means having more people come into the hospital home, undergoing an assessment and determining whether meal preparation is necessary. The thing is “I don’t want meal preparation for my mother. I just wanted a scoop of protein powder in a blender on this given day”. I am still waiting for a transfer wheelchair requested six months ago. I am still waiting for a lounge chair requested a year ago. Someone suggested “She can sit in the blue chair”. It is my father’s chair and it doesn’t fit properly”. I watch as my sister slumps over in my dead father’s chair, hoping his angelic arms are comforting her. Lately, I call on the dead more than the living.
It is important to tell this story because of the gaps in the system. On a given day, the gaps exert a force as strong as the disease. Instead of the system easing the strain, the system adds to the strain. It turns from hurricane winds to a riptide of sorts that pulls my sister further from health. I am not skilled at dealing with riptides. Some days I feel so far from the shore that I wonder whether I will ever set foot on land again. This home care experience and the chaos it created changed me fundamentally. In all likelihood, I will not want to set foot on land again. Not home health care lands.
I promised to get a normal job and have a normal life so I can help with expenses. I will, one day soon, because I must leave these trenches of homecare help. They are too deep. There are too many gaps that are tearing all of our lives apart. I wonder how it will feel to be like a captain of a ship who tries to escape when it is sinking. How will I wrestle with my conscience. I imagine it is the conundrum all caregivers and loved ones face. Do I leave and have a life while loved ones need my help? Do I remain this incinerator of sickness and the chaos homecare systems bring? If I walk away, I will have no peace. If I remain I will have no life. It would be worth it if my sister healed, but each day I watch her wither away in front of my eyes and listen to a thousand excuses from workers in a system that is not working.
Most days, I plug my ears to the pain because there is no solution at this point in time. There is no solution for my sister. There is no solution for health care professionals who step into our home, who really want to help my sister through this difficult passage. There is no solution because the homecare system needs to be revamped and restructured. In the meantime, caregivers and those for whom they care are left out in the ocean trying to bail water to prevent the boat from sinking. Workers tell me they would love to help, would love to bail, but they are so busy surviving their own lives with insufficient pay, long hours and ancient protocols that their hands are tied. I think a think tank is needed.
About the Author: I’m just a simple person who simply wants to give a voice to all those in need because I have listened and heard. Hopefully agencies and the government will hear and respond to the need.
Dale Lutes can be reached at firstname.lastname@example.org