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 this December. We have 4 children, 3 with spouses, and 7 grandchildren. We retired a few years ago to pursue our love of travel and to spend quality time with our 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 properly.
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 the 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 to Toronto 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 picc line with antibiotics. If the Vancouver surgeon had done a follow-up appointment with Bill before we went home, would the infection been caught 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 picc 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 picc 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 picc 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 picc 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 that point there was 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. An appointment with the surgeon showed a collapsed talus and he wanted 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. Finally, the surgeon said he was taking out all the hardware and recommended fusing. When we started this we were offered ankle replacement or fusion. Here we are 4 and a half years and 5 operations later and we are back at the beginning.
Bill has had over 100 x-rays, numerous CT and MRI 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 to our telephone message, 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 surgery 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 focussed 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 lots of 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 wants to deal with his ankle. 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? Our family is concerned but they have their own busy lives and are really unaware of the stress. You can’t understand something like this until you live it.
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. Disease or wound specific information can also be dispensed at the meeting with the caregiver. Understanding the change in roles from husband/wife to patient/caregiver is huge and needs to be addressed. The physical, mental and spiritual challenges of the caregiver also needs to be discussed and options given. The patient needs to understand the caregiver has needs as well.
- A better relationship must be forged between the hospital when discharging and home care organizations. The patient/caregiver needs to see a seamless handover. Nursing care needs to be closely monitored by supervisors with follow-up to the patient/caregiver on quality of care.
- 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 or those isolated from family.
- 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. Nova Scotia has an excellent caregivers website.
- 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 performing surgeon within 7 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 6 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 the surgeon has raised the topic of amputation. It is unlikely but a possibility. We will have to wait and see if the surgery at the end of September is successful.