A walk in my shoes: A Caregiver’s Ongoing Journey

The following is a very brief overview of my wife’s journey as a caregiver.

Me, a caregiver!

Since December 2009, my life has been like trying to walk a tightrope in stilettos with one broken heel, holding my head up high with as much confidence as I can manage.

I am a caregiver, a mother of five children, a wife, a friend, a volunteer, and full-time worker who supports my family. I am also the sole income earner. On most days, I am physically and emotionally drained—and although difficult, I try to find the courage not to give up.

The life-changing diagnosis of acromegaly has been taxing on my relationship with my husband and our family. My role to my husband as a wife, friend, and partner have been blurred with my role as his caregiver.

Our journey begins

Although Dan was diagnosed with acromegaly in December 2009, our journey began after the birth of our daughter in September 1995. At that time, Dan was awkward: he had gained a lot of weight, which we attributed to stress. In February 1996, Dan lost the weight he had gained but did not look well. It took some convincing, but he finally agreed to see our family doctor. She confirmed his suspicion—his fear—that he had what we thought was age-onset Type 2 diabetes.

Being an Olympic athlete and knowing the best way to fight this disease, Dan took on the task of getting fitter. He cycled every morning. He ate a diabetic diet. We, as a family, took on a healthier lifestyle. He did everything one should do to keep this condition at bay.

Over the next few years, his diabetes became more acute, controlled through diet, then also through light medication, including Metformin. There were signs that things were a bit different, but we attributed the changes to diabetes. He had mood swings, anxiety, excruciating joint pain, sleep apnea, and hypertension.

In July 2004, Dan was not feeling well. He had flu-like symptoms and just could not keep anything down. I went to work as usual, but returned home at lunch to check on him. Despite our best efforts to replenish his electrolytes, he could not keep anything down, so we took him to the hospital.

Things are never that simple

Upon arrival, we registered at admitting, but there was no sense of urgency even though he was diabetic. Although he had stopped being sick to his stomach, he seemed to be a little delirious.

Our young daughter was with us and she needed to go to the washroom.  When we came back, her daddy was nowhere to be seen. In under ten minutes, Dan was hooked up to oxygen, an IV, and a heart monitor. We were advised that a specialist was coming to see him, as his blood sugars were 30 and he was in full-blown ketoacidosis! He had very little potassium left in his body, his calves were hard and blue, and heart rate was very high. Now they were concerned! This was a horrifying experience for all of us!

Dan spent the next five days in the hospital and was now insulin dependent. We were fortunate: we had one-on-one instruction about insulin—how to measure the appropriate dose and how to inject it.

Not out of the woods

After this ordeal, we thought life would become somewhat normal again. In 2005, we lost our family doctor and started our search for a new one. In our patient-doctor interview, the doctor immediately advised us that Dan would be referred to a specialist—an internist who specialized in diabetes.

In 2006, Dan finally met with the specialist, who referred him to a comprehensive program at the hospital, with an inclusive team approach to help diabetics. This team included a doctor of internal medicine, dietician, physical activity trainer, nurse practitioner, and psychologist. Dan attended the supervised exercise program three times a week. Even through exercise and diet, the nurse practitioner could not understand the instability in Dan’s sugars and the insulin required to keep his sugars at a normal level.

From then until February 2008, Dan was still not doing well. He had high sugar levels and drastic sugar lows of 2.5 or lower. There was always this underlying apprehension of having a sugar low with no forewarning as to when and where it would happen. It happened at work, on the bus, in his sleep… no rhyme or reason.

Often, our daughter would come home from school to find her father lying on the bed with a sugar crash, unable to get his sugar tablets or juice to help himself.

One time, we had just had lunch and decided to go run a few errands. As I was driving, he grabbed my arm and advised me that he was crashing—but he had just eaten! His heart was pounding so hard you could see it throbbing through his shirt! I ran into the drug store and grabbed two bottles of orange juice. I told the cashier my husband was crashing and that I would be right back to pay. This was a reoccurring event, an almost daily reality!

A sugar low takes an immense toll on the body. You become very tired and need to sleep. Therefore, with this unpredictability, we decided as a family that Dan would work only part-time to accommodate his condition.

Loss of vision

Dan also lost sight in his right eye, in the left lower quadrant. It happened one day when he suddenly felt a sharp stabbing pain in his head. He closed his eyes and when he reopened them, he had this black spot, which is still there today. My understanding is that this was the result of the brain tumour.

His voice was not heard

Dan met with the internist every three to four months to review his chart and amend his insulin and medication accordingly. He would tell him about the sugar highs and lows, and how painful his joints were. He once told the internist, “I feel like I’m growing.” And yet, there was no reaction from the specialist who knew from test results that Dan also had enlarged heart, high blood pressure, and hypertension—all key signs for acromegaly.

In February 2008, Dan had a scheduled appointment that he did not want to attend. He said, “What’s the point? The doctor is just going to tell me I’m not taking care of myself—but I am!” I told Dan that I would take time off work to go with him so I could see his experience first-hand.

The doctor told him that he would need to be invasive with his treatment, but the short of it was that he would die. Then, the doctor left the room and did not come back.

After this morally unacceptable treatment by a health care professional, we requested that our family doctor refer Dan to an endocrinologist for a second opinion.

In November 2009, we finally met with the endocrinologist. She talked about Dan’s diabetes and hypertension, then asked if his hands and feet had always been large. He advised her that his shoe size was now a size and a half larger and his hands were so big that he had issues getting gloves to fit properly. He also said that he had told the internist many times that he felt like he was growing and had ongoing headaches. By this time, Dan had difficulty making a fist due to the enlarged joints in his hands, suffered excruciating pain in his knees, and had difficulty standing or sitting for any length of time.

The endo ordered blood work and confirmed appointments for Dan to meet with the dietitian and the nurse practitioner.

The day my world went topsy-turvy

On December 2, 2009, our entire world was turned upside down. My husband Dan, the love of my life, was diagnosed with acromegaly.

Acromegaly is gigantism in adults—an uncommon and rare disease. We were thrust blindly into Ontario’s complex health care system. Between the time of diagnosis in early December and the beginning of January, Dan had had a colonoscopy, MRI, CT scan, appointments booked with an ENT, ophthalmologist, dietitian, nurse practitioner, and neurologist, as well as endless blood work. I did not realize until then that there were so many check boxes on a requisition form!

Then the news came that nobody wants to hear: Dan had a brain tumour.  Although not cancerous, this tumour produces growth hormones similar to those of a young boy going through puberty.

Procedures

The first Endoscopic Endonasal Approach Brain Surgery (EEA) took place on March of 2010, followed by a second in October 2010; both were unsuccessful. Then in July 2011, Dan underwent a round of radiation with the Ottawa Hospital’s newest technology, the Cyberknife robotic radiosurgery system.

Unfortunately, the tumour is still intact and producing growth hormones. Another surgery is not an option at this time.

Dan is somewhat stable now, but has lost so much physically, emotionally, and socially. Our life as a couple and a family has changed on so many levels. The tumour is still with us, causing an acquired brain injury (ABI), which manifests itself with short-term memory issues, free flowing anxiety, depression, disinhibition, lack of social graces, and now claustrophobia. Dan also suffers from exhaustion, high blood pressure, and diabetes, and he no longer produces his own testosterone or natural cortisol.

He is on numerous medications, including a monthly injection of the drug Sandostantin LAR (ocreotide) to help regulate the growth hormones. This injection makes him very ill, making it almost impossible for him to leave the house. This results in the cancellation of medical appointments, as well as any other activities. Depending on his IGF-1 levels, his monthly injection can cost anywhere from $2,500 to $4,500. This is every month, ongoing.

With acromegaly, one is more prone to further health complications. A mass has been discovered on one of Dan’s kidneys, and we await next steps. The fight is not over.

Financially stretched

Our current annual medical bill for Dan is approximately $40,000. Thankfully, I have a job and benefits that cover part of these bills, but it has put a strain on our finances.

Dan applied for his Canada Pension Plan (CPP) disability three times and was denied each time. We were told that our only option was to appeal. Where does one find the time and emotional energy to appeal when dealing with so much?

It was recommended that we apply for the Ontario Disability Support Program (ODSP); however, we were told that I earn too much and we have assets. We live from paycheque to paycheque, and feel hopeless that things will never get financially better.

Understanding Acquired Brain Injury

After many years of trying to get help, we finally did get some assistance from the Vista Centre and the Ottawa Hospital Robin Easey Centre. In June 2016, we met with a neurologist specializing in acquired brain injuries and a neuro-psychologist who tested Dan and confirmed his deficiencies.

My vibrant husband, who was the epitome of fitness, passionate about politics, and so engaged in his community, is no longer with us. My wish is for him to have the resources and guidance to help him live a more fulfilling life, and to again feel validated as a person, a husband, and a father.

I have been very fortunate to work with a team that has supported me through my caregiver journey, but I have no doubt that this is not the case for many other caregivers across the province. It is an immense challenge for one person to juggle so much, and caregiver burnout is always a part of my life.

Hope for the future

I continue to advocate for Dan and raise awareness about acromegaly via the new Acromegaly Ottawa Awareness and Support Network, of which I am a founding member.

We endure a non-sustainable struggle as I continue to walk that tightrope with a broken heel, and realize that no system, program, or person will ever break my ongoing commitment to my husband.

My hope is that the CPP disability benefit program will adjust its policies to support Canadians suffering from a rare disease, who must struggle each day to find ways to cope with not only their illness, but also its impact on their family and financial well-being.

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