This is where he wanted to be... at home. His wish was always to be at home when he died. His experience in hospitals over the years were sometimes not good. We were blessed with another 19 months together at home. We were given the support of a hospice and had privileges such as a visiting physician when needed, and all other needs during that time.
We did whatever he was able to do with the comfort of knowing that a personal doctor was available anytime should we need him. When his situation became worse, he had oxygen and anything else he needed. His last night, he was in his chair watching TV and I knew he had experienced a lot of heart pain that day, but he never took any medication for the pain, even though it was available to him. He was a strong, brave man who accepted his illness and did his best to live as best he could.
He died that evening while watching TV, in his chair, just as he had wished. I had all the instructions from the hospice as to what steps to take when this happened and this is why my husband died, with dignity, at home. No ambulance, no hospital, no expense to the system. A doctor from the hospice came and then the funeral representatives came (in the middle of the night) and took him to the funeral home. We planned it this way and the system worked for us only because of the hospice and the fact that we were referred to them by some very kind health care workers at the renal clinic, of which he had been a patient for many years. He had many good, caring doctors over the years who dealt with each of his problems but without my help to guide this care, he would never have been able to administer his medicines, nor follow instructions from so many different doctors he had needed over this long period of time.
This story is told from the perspective of a family caregiver who is supporting her spouse through an ongoing mental health crisis. Their experience illuminates the impact of a health care system that fails to recognize mental health care as essential to overall health and wellbeing.
I have been desperately assisting my husband, a father of three children, navigate through the mental health care system while he has been in a mental health crisis since the beginning of March 2016.
I knew this time would come. I didn't realize how much I would be solely responsible for managing his symptoms, safety, his dissociated, depressed, agitated and delusional states. I didn't realize that when my husband actually surrendered to the impact of his horrific chronic childhood abuse, his life would be left in my hands alone. When this time came, I felt so hopeful. I felt once the awful memories would start coming into his conscious mind he would finally be given the chance to heal. Somehow, I presently am unable to work because my husband is unable to retain information, or be aware enough to describe what he is experiencing, or is so ashamed he will not describe his pain and loss of control. He is either extremely depressed and cries all day, or wakes up extremely agitated and enraged. He has moments he feels his thoughts are out of his control. I see these moments and his safety is out of his control. This becomes my responsibility.
I have no idea of the triggers or when these moments will come. I never imagined he would experience any of these symptoms, that I would be his sole caregiver, or that I would have had to have to stop working. While my husband is making 60% of his income while providing for three children. I'm also struggling; how to minimize the traumatic exposure of my husband's illness on the children. My eight year-old son says to me, "mom, be careful with dad, he will start crying", or "mom, dad’s not the same". My husband used to play, laugh and be silly almost always. Now he could sit in the living room with our children and does not say a word or interact for hours.
Our son has not been sleeping. He comes down to our bed and snuggles up with his dad and just can't sleep. As for my teenage girls, they ask why he is always angry now. They avoid him, I see their concern for him and for themselves because my time is spent finding my husband treatment, a safe place for him to heal without his children watching. When we moved to Guelph, he was becoming increasingly disabled. He was put on a waiting list for a psychiatrist, minimum one year. He was struggling and he needed medication to manage his thoughts and mood. At that point he was diagnosed with major depression and ADHD. The doctor decided to send him to Toronto to be assessed at the ADHD/Asperger’s clinic ($1,200 on the credit card). The assessment concluded he has severe ADHD and PTSD from his childhood abuse. They said they could not help him until he received treatment for his PTSD. Our family doctor at least felt more comfortable treating him with an assessment. He admitted his knowledge of ADHD in adults was limited.
We found an adult ADHD support group ($25 per session) that was very informative. It helped my husband feel supported and less isolated. However, his ability to use the tools he (we) learned were not accessible due to his crippling anxiety, depression and brain damage from experiencing chronic abuse and neglect. So we tried the same counsellor for intensive individual cognitive behavioural counselling ($130 per session, twice a week on the credit card, not covered). It was debt we couldn't afford, but he was desperate to function. He was practically unable to maintain daily household and family responsibilities. I always wondered how he kept a job, but he was often laid off, or he left most jobs because he seemed so overwhelmed, made mistakes, causing employers to become very frustrated. We now know anger and frustration is a trigger. He becomes emotionally paralyzed and has made many errors during these moments. They increased as supervisors and other employees became more frustrated with him, but he kept working.
Many times in the past he took himself to the emergency department because he couldn't manage the shame and embarrassment. He would find a new job and try again. His counselling became overwhelming, I was asked to attend so maybe I could assist in his "homework" at home. I could help him remember what he needed to do, stay focused and motivated. This became unsuccessful and a financial burden. Our doctor said he had an available psychiatrist and we jumped at the opportunity. He had been charged with sexual assault of a patient but we couldn't wait a year and were desperate. He put my husband on new medication that included high doses of ADHD medication and medication for anxiety and depression; they were increased weekly until his new diagnosis. It was this moment that sent my husband into crisis.
Our doctor told me first that he was unsure if my husband could handle his new diagnosis - he told my husband that he had Dissociative Identity Disorder. He told him it was unlikely that he could find someone to help him and gave us the referral he was aware of. They were unavailable, however, a nearby mental health clinic had a PTSD inpatient program. My husband then told the doctor that he wished he has told that he had a brain tumor. I thought it was a bit extreme, but now, while I am writing this, he would have had a better quality of life because our insurance would cover that treatment. He would have medical support, a treatment plan and a possible date to return to work. Presently, we have some outpatient educational groups that offer tools to manage stress and flashbacks, and two of six sessions left with his psychotherapist, one of which he missed because he was too depressed to get out of bed that day.
My husband began having extreme difficulty at work. He always did, but something happened and he broke, so he was sent home. A week later I woke up and he was pacing around the room, scattered and agitated. He was supposed to take the kids to school because I was sick but I didn't feel he was safe to drive. The rest of the day he just cried uncontrollably. He became so agitated he was frantically writing in his journal. He was panicking. He thought he saw something, but I had to tell him that it was not true. My parents watched the kids and I took him to the emergency department. Earlier he had called a 24-hour crisis line, and he had to leave a message and was called back a couple hours later. It was too late. He was admitted, his medication was increased and ADHD medication was decreased. He was told he needed intensive inpatient treatment, and that he would be admitted to a nearby mental health program in a week or two for one program if his benefits covered it and another if not. He was told he could stay admitted if he wanted but we felt we could manage that short time with him home, if not we would return - we had a plan. But we then found out that our benefits didn't cover the whole program, and we needed $8,000 for him to be admitted.
He was put on the urgent list allowing him to be admitted immediately but not without the outstanding $8,000. I asked the clinic if there was a payment plan but they it had to be paid upfront. So, I contacted his human resources. The sent his file to acclaim for further assessment. Our family doctor sent a letter indicating his present symptoms were severe and we were told we would get a call from a caseworker the next day. A week and a half later we got a call for a phone assessment from a caseworker from "back to work services” in British Columbia. She said he needs intensive treatment for him to return to work. She called everyone that had seen my husband and would try and figure out how to get him admitted. He were hopeful... again.
When my husband was discharged from the emergency ward, the medication seemed to have concerning side effects. We had his psychiatrist appointment the next day, but when we arrived we were told he had retired. We were supposed to be called but this didn't happen. Now we have no psychiatrist. The family doctor is decreasing his medication due to the side effects and will find out in two months if there is an available appointment; however, we figured he would receive that assessment and treatment in the clinic that required an $8,000 fee.
We got a call on Thursday from the caseworker and she informed us our funding for the mental health program was not approved. He was approved for immediate admission but not for financial assistance. We can barely afford our rent right now. Our debt is out of control because we are paying for medication at full price while my husband was without benefits for his new job. We're trying to avoid this crisis by paying for whatever counselling we thought would help, and now we have nothing. When the caseworker called and told us the bad news, I felt like I have lost my husband, and that my children have lost their father. He has worked hard for his whole life. As a child he raised his family, he was left at home as a 10 year-old boy when his mother went into fits of rage. He endured endless physical, mental and emotional abuse.
My husband has never used drugs or alcohol to cope, he's never smoked. He just worked and tried to keep moving forward. His brother is an alcoholic who needs a liver transplant, but he cannot stop drinking. He was held in the hospital for two weeks to detox, and received disability benefits because he could work due to his physical illness. My husband can't work but he is crippled just the same. He did everything right; he had no family support, instead he supported them. He had no childhood, as he was abandoned by his mother. He couldn't let go because he didn't have a sense that he would be supported.
He didn't choose this. He was a productive, hard working, kind, law abiding citizen, and he was an amazing husband and gentle, caring father. For him to receive affordable treatment he needs to become a drug addict or alcoholic because that's covered at the treatment facilities. Or, if he was reckless and hurt his body to numb the painful physical symptoms for his mental illness, he could have his physical symptoms cared for under OHIP.
My plan was to get him admitted to start the process, and I would remain home for a week to help myself and the kids adjust. I would then return to work, as I've been on sick leave. However, now I need an independent medical assessment to determine my eligibility for sick pay. I looked over the benefits and there is nothing stating that a caregiver has the right to stay home to care for a family member during mental health crisis, only physical illness and possibility of death within 29 weeks. It's likely that I've lost a month’s pay. My husband is getting worse by the day, and I continue to see him struggle. He said he doesn't know what's real, that he doesn't trust his eyes and ears, and it's inhumane that he's left alone like this. His symptoms have taken over, there are only moments we get a glimpse of the dad and husband we know. I look at him struggling and I wish he had a brain tumor instead.
My husband was experiencing a painful sore throat though only on one side, and he did not have a fever. He gargled with salt water, yet 2 days later it was worse, causing much pain when he swallowed. We headed to a walk-in clinic as our family doctor is a 35-40 minute drive each way. From experience we know he cannot see us the same day. We arrived at the walk-in clinic around 9:30 am. Our wait was approximately one hour, the waiting area was very clean and staff was courteous. The doctor saw my husband, discussed his symptoms and took a swab of his throat for testing. He said it would take 24 hours for the results to come back. The doctor said the clinic would call him if they discovered something that needed treatment. He also advised us that recently some of his patients had been diagnosed with strep throat, and there was a virus circulating that caused symptoms that mirrored those of my husband.
July 1st, my husband woke at 5:30 am saying that his pain was even worse and asked if I could take him to the local hospital emergency department (ED). We arrived at the hospital parking lot around 6:30 am. It was our first visit to this hospital, as we recently moved to the area. We parked and headed to the ED entry at which time we began hearing from a loud speaker a voice welcoming us to the department. It then went on to advise us that staff were entitled to respect, and to use a mask provided just inside the revolving door; the message was on an endless loop.
Here's my suggestion: A live person’s voice recording would lend a “human” dimension to this communication.
The outside glass on either side of the revolving door as well as the revolving door, was dirty, finger marked and had a number of hand-made posters, poorly written/scrawled, hanging lop-sided, so one had to bend one’s neck to read them.
Here's my suggestion: Where are the environmental/maintenance folks? Cleanliness from the entry way to everywhere inside inspires confidence in patients, not to mention more respect. With computers and all types of materials to make signs and posters, the way in which patients are greeted with upon entry makes an impression.
Immediately inside, we took and put on the masks provided. There were a collection of wheelchairs scattered about this area, around which we had to navigate in search of the Triage Desk.
Here's my suggestion: having wheelchairs organized in a space away from patient traffic would pose less of a navigation hazard. A poorly hand-made sign pointed to the right, which we followed, then came upon a room on the right side which was the waiting room for Triage. No one was in the waiting room nor was anyone sitting at the Triage desk. If triage staff must be away from desk, please leave a sign advising walk-ins where to find a staff member; what if I could not have left my husband to look for someone? I told my husband to sit in the waiting room and I would go and find someone to help us. A minute or so later I saw a hospital staff member and advised her that we had just arrived and no one was at Triage. She said “go and wait in the waiting area and someone will come.”
Here's my suggestion: An apology, or saying something comforting like, “let me get the Triage staff for you right away" would have been appreciated. We sat. A couple of minutes later the Triage person arrived and took a seat behind the desk without looking at us. She then looked up, saw us and called out “next” for my husband to come to her desk.
Here's my suggestion: An acknowledgement by the Triage member was called for here; instead I perceived we interrupted something she was doing and we were an interference in her job. My husband and I both approached the Triage person sitting behind the desk, which was behind a glass panel that had a small circular opening in it. There was one dirty looking, black plastic chair in front of the Triage area for the patient.
Here are my suggestions: Wouldn’t it be nice to have a clean chair in a hospital. and nicer still, if the person accompanying the patient had a chair to sit on? This would make it easier for caregivers to converse with Triage if the patient needed help answering questions or providing information. Instead, that person, the patient’s wife in this case, had to bend down to speak through the opening and stay that way to hear the questions and provide information to assist the patient. My back and knees hurt after a while in a stooped position. The Triage person was expressionless and took my husband’s medical information without looking up from her computer.
I’m sure there was no malicious intent on the part of the Triage person; her behaviour however, loudly communicated she was unaware of the fact that two human beings were in front of her: a patient in much pain, unable to concentrate on providing her information she required to complete her job, and another person who was worried about her husband and also experiencing pain as a result of bending down to talk with Triage. Her people skills were nonexistent.
With the information taken and without looking up at us, she told us to “go down the hall to another waiting area, give this (materials) to the nurse at the station, and your husband’s name will be called.” Again, she could have used people skills saying something to the effect of, “thank you for your information, I’m giving you this paperwork which you will give to the nurse at the station in a seating area, just down the hall to your left. There you’ll wait for the doctor to see you."
Three people were waiting in this second area. Signs were posted all around us, advising that patients would be seen in order of priority, and to be respectful of staff or one could be asked to leave.
Here's my suggestion: Perhaps the signs could have been more people-oriented, instead of intimidating.
After an hour and a half my husband’s name was called and someone directed us by pointing the general direction to another wait area, there a doctor would see him. We waited there about one hour. The doctor was a welcomed relief - pleasant, the first staff member we’d met since arriving that seemed human, and he was the fourth staff person with whom we interacted. After interviewing my husband, the doctor advised they would do blood work and accompanied us to where to wait for a technician. (Great people skills.) We waited another hour, then the technician called my husband’s name. Blood taken, I asked the technician “approximately” about the wait time for results and was advised approximately one hour.
Here's my suggestion: The technician did not advise us how long the results would take, I had to ask him. He could have been more people-oriented as he's a medical professional and knows roughly how long these procedures typically take. We were sent back to the second waiting room to wait until my husband’s name was called over the loud speaker.
After about two hours, I approached a desk where three people were seated behind glass. As I approached, a young man stood up, not because he saw me coming, but to stand while he talked on the phone.
Here's my suggestion: His appearance was intimidating, as he was quite dishevelled – I didn’t want to talk to him but we were exhausted waiting. Once his phone call ended he looked at me expressionless and wordless. Intimidated by his appearance, eye contact and demeanor, I said as gently as I could “excuse me, my husband had blood work two hours ago and the technician said that it would take approximately one hour for the results. We’ve been here two hours and we haven’t heard his named called."
Assuming I was a terrific burden in his day, I adopted a more submissive, hesitant approach and said “excuse me, we were advised to wait but I’m wondering if we have been sitting in the wrong wait area and maybe missed hearing my husband’s name. The young man, expressionless, hardly looking at me, asked “what’s the name?” He entered my husband’s name into his computer from a standing position, muttered something, without looking at me, about results being back. He made a call and said to whomever picked up that my husband's results are back, and he’s waiting for results. The young man was in the middle of telling me to sit down and wait when my husband’s name was called over the PA.
In conclusion, we are never coming back to this ED, I don’t care how far we have to go. We headed back to the same area where we had seen the nicest person we encountered, the doctor, and sat to wait. Approximately 40 minutes later the doctor arrived to speak to us where we were seated. He said the blood results were fine, and if the sore throat persisted that he should gargle with salt water. We thanked him and left.
Checking the time expended in this visit to ED, it was 1:00 pm.- it had been six and a half hours since we first arrived. We paid the exorbitant parking fee and left. We should have called Telehealth Ontario and asked them to call all ED's to inquire to the shortest ED wait time. I have called Telehealth four times in the past and they have always told me to go to ED.
Here's my suggestion: Maybe patients and family caregivers should call the ED (or check on-line) to see what the average wait is before going to any ED, or perhaps walk-in clinics could remain open 24 hours a day.
I once burned my leg inside my thigh with a cup of boiling water. I was wearing corduroy slacks at the time and the burn was painful and severe; however, I refused to go to ED because of long wait times. Instead I treated myself at home and went to a walk-in clinic two days later when a blister had formed.... the wait time was an hour.
Follow-up from visiting our family doctor
This happened on July 3rd. Our family doctor can rarely see us the same day. We like him a lot and never will move or give him up for anything. He’s younger than we are, so we're hopeful he will see us to the grave. Plus, he’s hip to technology, great to talk with, demonstrates compassion, is knowledgeable, he answers our questions and always referred us to great specialists when needed. He referred my husband to an ENT (Ear, Nose, Throat) specialist. His office had to make the appointment with this ENT for us, and informed us that they'd call us with a date. My husband’s sore throat started to subside somewhat, but we were both anxious to discover the problem. Our family doctor’s office called a week later, advising my husband can see him in mid-September! Our ED experiences have been lengthy waits, though not so 'people-unfriendly' for years. We’ve used ED services maybe five times in the last 15 years. Hopefully, things will improve.
A father explains how his 18 month old daughter's hand injury turned into +50 hours in the emergency department, and how poor communication and suboptimal care made his family feel unheard and ignored.
This unpacks my first experience at a children's hospital in northern Ontario with my 18 month old daughter. Sadly, a family vacation turned into a tragic experience. We flew to Cuba over a weekend in late March of 2015. On Saturday evening, we went to the beach at our resort in Varadero, Cuba. What was going to be a pleasant relaxing moment turned into a tragic event. Just as we sat on the beach chairs, my 18 month old daughter caught her right hand middle finger in the chair. She completely cut the top part of her middle finger off, down to where the nail ends. Her finger bone was slightly exposed. My wife and I panicked.
My wife grabbed the separated piece, in hopes that it could be attached again. We called the security guard who right away called the ambulance. For the next 6 hours we were on the roads of Varadero. First to one clinic, where they could not treat the wound, then to the main hospital, where the wound was cleaned and she was given a temporary dressing. We got home at midnight. We had to hold her arm up straight the whole night and my wife and I took turns to rest. I looked for the first flight back to Ottawa. We flew from Varadero late afternoon the next day and arrived in Toronto late in the evening.
After a five hour layover in Toronto, we took our late night flight to Ottawa and we arrived around midnight. We went home and grabbed what we required and ran to the children's hospital. (I was afraid that there could be some infection and we, at the time, had faith in our health system.) We were at the emergency entrance around 2 AM on Monday morning. We went to emergency, explained our situation, and this is what happened next… I explained the whole episode to the person at the first triage who everyone is supposed to see first upon entering the emergency department. I also told him that the doctors in Cuba gave her antibiotics and that she has to take a dose every 8 hours. To my shock he started laughing and replies, “every 8 hours doesn’t mean every 8 hours, you just have to split the 3 dosages throughout the day - once in the morning and second in afternoon and then at night time.”
I was thinking, okay, I understand, but where is the humour in this? This person knows that my daughter’s fingertip (1 cm piece had been cut off) is in my hand and I am in extreme pain, and this is how he comforts me and my wife? After that, there was no triage done at all. We waited with my exhausted daughter for the next 5 hours. It was terrible. My baby was in so much pain and I could do nothing but wait. At this point we had been up for almost 40 hours. I went twice to the registration staff and told them exactly what had happened, but no urgency was shown. Around 6:30 in the morning we went to the inside visitor room. Here, after an hour wait, a junior resident came. We told her what had happened and she left to get scissors, she then started cutting my daughter's bandage. At this point my wife told her that the wound is fully dried now, and maybe she should moisten it to remove the bandage easily, she continued still. She then realized that it was very dry and took us near the sink in the waiting room to moisten it with tap water. She was struggling to unwrap the wound. I asked her why she was not treating my daughter in a proper room with the required equipment. At this time my daughter is crying her lungs out as she is full of fear.
After asking her twice, she took us to another room which was also not properly equipped. She brought a helper and started opening the bandage. After she opened the bandage the wound started to bleed out again. They then told me that they have to go locate the proper dressing material for her finger - my daughter is still crying with pain. I was shocked that they didn't have the equipment ready before opening her bandage. This was so excruciating for us. We felt that the treatment in Cuba had been better than our experience here so far.
The nurses and doctors left the room and here we are, me, my wife and my daughter, waiting helplessly. The blood from my daughter’s finger is now dropping on my wife’s clothes and floor. Her hand is drenched in blood. I exit the room furiously looking for some help. I ask one of the nurses at the counter about the staff's whereabout, the ones who were helping me daughter, and she gave me a robotic response: “they will be there soon.” I return to the room and grab some more tissue to clean the blood. After a few minutes three student nurses arrive with a senior nurse. The students - at least they looked like students in virtue of the instruction they were receiving - were required to do a simple dressing of my daughter’s fingers, though they don’t seem to know how to proceed... the blood is still flowing out. One nurse stated, “oh, there wasn’t this much blood when we left earlier.”
My goodness! I did not know what to tell her. Three of them clean the wound and start wrapping it with fresh dressing. Lo and behold after a minute my wife notices that they are not covering her injured finger properly, and repeatedly tells them this. When they realize they have to open the whole thing and do it again! There is also a senior nurse behind them who is actually teaching them how to do the wrapping. He is showing them by demonstrating it on one of the nurses. I am thinking, if you are qualified, just help my daughter! Why train the staff at this urgent moment? During this the senior doctor came to have a look and the only thing I hear him say is “seems like the nail is gone completely!”
That is all I hear, after which he gives some instructions to the junior doctor and leaves. Thank you doctor, for the comforting lines. They do a temporary dressing telling me that the plastic surgeon team will come have a look later in the day. It is around 9 in the morning now. We then wait for someone to show up and tell us when the team will be coming. After another half an hour of waiting, the same junior doctor arrives and tells us that we can go home and we'll get called in a day or two regarding the plastic surgeon. I explained that they did a temporary dressing and we shouldn't leave like this. Also, how will my daughter sleep? If the wound gets a little bump it will hurt her immensely. I asked her if they can cover her hand more to absorb any impact and she offered me extra dressing material to take home and wrap myself.
We had no more strength to argue or even utter a single word. We had been up for many hours (I was up for more than 50 hours). We went home, wrapped her finger with some more dressing and tried to get some rest. We got a call on Tuesday evening for our appointment on Wednesday morning with the plastic surgeon. When seeing her, she inquired about who did the dressing (this is the dressing the nurses did on my daughter’s finger, the extra one we did, we took it off earlier, as it was only for her sleep time). She actually inquired three times to who did the dressing. I told her this was the staff in emergency.
My faith in the health system of Ontario has been damaged severely. I hope something is done to restore my faith. I have seldom wrote an email to express my dismay but this one I could not ignore.
Once patients enter home care, support for caregivers is crucial. This story is from a woman who asks the important questions once she assumes the role of his caregiver to her husband: 'Why aren't there caregiving classes as they do with new mothers for breastfeeding, or diabetics with insulin?'
To understand where I am right now, you need to understand where I’ve been. My husband Bill and I have been married for 28 years December of 2014. We have 4 children, 3 with spouses, and 7 grandchildren. We appreciated our life and are thankful for everyone in our life and what we have worked so hard to get. Bill has an older sister and I am an only child.
Twenty-five years ago, Bill slipped on the ice and broke his ankle. At the hospital we waited over 4 hours for medical attention. I kept going to the nurses’ station asking for ice and somewhere he could go to put his ankle up to keep the swelling down until a doctor was available. Each time I was told in no uncertain terms to sit down and wait my turn. When he was finally seen, his ankle was so swollen the skin was splitting and they could not set the ankle.
Fast forward to 2002. We retired, the kids were on their own and we looked forward to following our passion of travelling and living in other cultures. By 2006, Bill’s ankle hurt too much for us to walk, especially in Europe where walkways are unpredictable. Our GP recommended one of two ankle replacement specialists in Ontario. After a year of not being able to get an appointment she asked us to try to set up an appointment. We phoned, left messages, called again, left more messages until eventually we visited the hospital where this specialist worked and saw his admin face to face. We got an appointment in 2009 and the specialist said there was a four year waiting list for him to do the replacement. (Because the Ministry of Health had a push to speed up hip and knee replacement surgery, ankle replacements suffered.) We wrote to the Ministry of Health who said if we paid our own airfare and hotel, they would pay for the surgery to be done in Vancouver. We gladly accepted this and while the surgery and recovery would be difficult, we were excited that Bill would be well enough to travel in 2-3 months. So we went to Vancouver in April of 2010 and the surgeon replaced Bill’s ankle. The last time we saw that surgeon was the day of the surgery. When we returned 2 weeks after the surgery, we visited the Toronto specialist/surgeon who took over Bill’s care. The ankle was infected so he had six weeks of a pic line with antibiotics. If the Vancouver surgeon had done a follow-up appointment with Bill before we went home, would they have caught the infection in time? After week 4, the surgeon didn’t see any improvement in the infection and recommended removal of the hardware. He did this and put in an external fixator to keep foot and leg together and kept the pic line. Home care was set up and we were assured it would be seamless. We didn’t have a home care visit for 48 hours after we were discharged from the hospital. That meant no antibiotics for his pic line and no dressing changes. I went out and bought some stuff to do the dressing changes myself. When the home care nurse finally showed up she took one look at his external fixator and said, “I hope you don’t expect me to change the dressings on that, it’s disgusting!” This started my second career as a nurse. After 8 weeks he had the fixator removed and another set of ankle hardware inserted. Another infection, another pic line, more home care nurses, who by this time were simply monitoring my work.
After a few months, the surgeon examined Bill’s ankle and saw he had a cracked heel, and wanted to do another surgery - fusion - to try to screw it together. At his pre-op they discovered Bill had moderate congestive heart failure and atrial fibrillation (heartbeat at 172 bpm) and couldn’t get it down without regular medication. His ankle surgery was delayed for 6 months to stabilize his heart but eventually took place. Another infection set in but again was controlled with a pic line and antibiotics, which I was looking after as well as wound care. However, after several weeks it was apparent that the fusion wasn’t healing properly, so 3 months later they did a revision – the fifth operation – and again back to antibiotics and wound care, and still on crutches (Bill was prescribed to be off his feet from September 2013 to May 2014).
At this point there is so much hardware in his ankle his x-rays show all metal pieces going every which way and they could barely hold the skin together with stitches. His last appointment with the surgeon shows a collapsed talus and he wants to do more surgery but didn’t book an appointment for 6 weeks to see if anything changes. What can change? Will it magically heal? Another 6 weeks of waiting. Bill is still on crutches after almost 5 years.
Bill has had over 100 x-rays, numerous CT scans, and 5 surgeries in the last 4.5 years. Two years ago he developed a heart condition. Did the stress of the last few years cause it? We have lost years of our retirement. We don’t know how much time we have left to do the things we want, but we know we didn’t want to spend it in hospitals or waiting; waiting for the next appointment, waiting for the next surgery, waiting for a response, waiting, and waiting.
Is anyone thinking of Bill has a whole person, except me? I am frustrated with the surgeon’s admin because perhaps the outcome would have been different if the surgery has been done before the ankle had deteriorated so badly. I am frustrated with home care because they are unable to provide quality care, so I have taken it on because I care about the patient. I am frustrated with the surgeon because he’s not looking at the whole patient. Every surgery Bill has is a strain on his body, heart, circulation, stomach (from meds), boredom, mental frustration, etc. I feel the surgeon is focused on the technical aspects of what the problem and solution is for the ankle and not looking at the big picture. Who is thinking about all of this? Me. Our life is on hold. I now have many new responsibilities. I am trying to help my husband with his physical ailments and keep his spirits up as well.
In addition to his heart and ankle issues, Bill learned last year he shouldn’t be eating gluten so I have had to restock our kitchen and learn new recipes. As well, because of his digestion issues, he can’t eat leftovers, so no cooking big meals and freezing to save time. He also has other health issues which I need to track and look out for. I have had to learn medical terms, techniques, wound care options and become conversant in ankle replacement technology. I look after the family gift buying, organizing family time, taking care of the dog, groceries, errands, cooking, cleaning, etc. Imagine trying to get Bill (at 6’10”) into and out of the bath keeping his one foot off the ground. The effects of the medications, pain killers and anaesthetics have made Bill’s comprehension and thinking process very slow so it is left to me to think of and ask pertinent questions, make plans, push for answers, coordinate health care professionals, etc. Fortunately, the surgeon includes me in the conversation and has responded to emails when it is an emergency.
All of these health issue responsibilities are in addition to my day-to-day activities. I have rheumatoid arthritis and outside interests, all of which have gone by the wayside to make room for these added duties. I miss having grandchildren for sleepovers, spontaneously travelling somewhere, visiting friends, taking courses. Neither of us were prepared for the amount of time and energy this has taken.
What is disappointing is that I was not given any information on caregiving. So many times I felt I was drowning and totally overwhelmed. I don’t know how many times I cried because I couldn’t keep up with the learning curve. I was expected to be the strong one; reassuring our children and friends and keeping up appearances. Family and friends offered to help, but really what could they do? If someone had shown up with a meal, that would have been welcomed, but with Bill’s diet, I think people don’t want to tackle it. No one is interested in helping with the medical issues. There has been no one for me to talk to who can really understand what I am going through and offer helpful advice. I have been so busy and so exhausted that it never occurred to me to look for help. The last 5 years have been so stressful. What are the cumulative effects of this? What happens to Bill if something happens to me? What needs to change?
Before discharge, the hospital should provide caregiving classes as they do with new mothers for breastfeeding, or diabetics with insulin. These classes should also be made available to anyone who is caring for a family member by advising GPs and specialists of their availability. A better relationship must be forged between the hospital when discharging and home care organizations. The patient/caregiver needs to see a seamless handover. Doctors/surgeons need to consider the whole patient, finding out what else is going on in the patient’s life because it will affect recovery. They need to invite the patient and primary caregiver into the conversation early and keep them informed of the short and long term plan. When things don’t go as planned, they need to include the patient and primary caregiver in available options and agree on the path forward. Managing expectations is critical.
Home care professionals need to be trained and conversant in medical advice not just on wound care but in emotional issues as well. These could be suffered by either the patient or the caregiver. Officials should be alerted if the despondency or difficulties are ongoing, for more specific assistance. This is especially true for seniors. The administrative staff in the health care system need to be sensitive to the plight of the patient by making every effort to ensure the patient sees the doctor as soon as possible and raising red flags to the doctor if the wait is too long (6 months) as defined by the Ministry of Health. Patients and their caregivers should be routinely asked by the surgeon/specialist if they are satisfied with the administrative services without fear of retribution.
The Ministry of Health needs to recognize, acknowledge and provide assistance for caregivers because they are supporting the health care system without pay or training. When we left Vancouver, the surgeon had not looked at Bill’s ankle since the day of surgery. If the infection had been caught earlier, would he have had to have the external fixator? It should be a requirement by the Ministry of Health that follow-up must be done by the surgeon within 10 days of the surgery. If, when Bill originally broke his ankle, the medical team had triaged Bill properly and given him ice, elevated his foot and tried to set his ankle before it was so swollen, would we have had the last 5 surgeries? There needs to be follow-up on surgeries to determine if they were successful. And, if complications develop, why and what could be done differently?
What gets both Bill and I down is that there is no end in sight. What started off 5 years ago as a 3 month recovery period has turned into years of pain, worry, anxiety, frustration and more pain. At this point we have talked about whether amputation is an option. We will pursue it at the next appointment with the surgeon.