A Caregiver's Perspective
Allison is a caregiver for Brian, her husband, who has chronic migraine. She agreed to an interview about what it’s like to be a caregiver. She responded to my questions with candor and insight. At times, her responses are raw and, to someone with chronic migraine, might seem hurtful. Please keep in mind that she’s giving an honest look into the difficulties and mixed emotions of being a caregiver and a spouse. She loves her husband deeply and supports him fully.
Allison and Brian are in their mid-40s and are both family practice doctors in Canada. Due to chronic migraine, Brian has been unable to work full-time since 2007 and unable to work at all since 2012. She responded to the interview questions while they were on vacation. I am so grateful to Allison for agreeing to be interviewed and for not censoring her responses. This is the most real account of caregiving I have ever read. (Other than the headings, the rest of this article is in Allison’s words.)
Brian’s Migraine History
Brian’s earliest memory of headaches went back to about three or four years old. His grandpa gave the family an encyclopedia set and he remembers looking up headaches and learning that it might have something to do with oxygen. So he stopped sleeping with the blankets over his head, thinking that his head was hurting because of this!
He started with episodic migraines. He was not diagnosed until his early 20s. He grew up in a family with 5 other kids and you just don’t bother the parents with this sort of thing. His dad was disabled and his mom fed the family on a part-time salary. In 2003, at 33, after 15 years of university education, he moved back to his hometown in the high mountains of British Columbia, took over a very busy medical practice and we worked like a bugger to pay off our debts. He became the chief of our family medicine department. We bought a house. We wanted to get married. We wanted to start our family. He then took over part of another practice from a retiring doctor with no successor. He was young. He couldn’t say no. This inability to say "no" would be his Achilles heel.
The headaches were always there but soon, they became more frequent and more severe. He took every triptan and prophylactic out there. He took Percocets by the handfuls. His doctor watched him and went along with things. He did all this so he could work and we could start our life. Six months after we got married in 2006, I suspected my husband was going to become disabled. On July 1, 2007, I convinced him to let me [cover for him for two weeks] while he took a break to "recover."
He never returned to full-time practice.
His headaches became ”chronic transformed” and thus, started the slippery slope down a path of high-doses of morphine, hydromorphone, oxycodone, methadone, ketamine, etc… In hindsight, I wished we never started the chronic narcotics because this created another Pandora’s box. But we couldn’t have done anything differently. The amount of pain he was in was frightening. He was on so much mess he was only awake for 4 hours a day. During that hellish year, I have often asked God to take him because it was more merciful than his suffering. This is particularly ironic since I did not believe in God at this time.
He went back to work in June 2008 and I worked along side with him, supporting him and picking up whatever pieces he couldn’t do, cleaning up after his mistakes which he doesn’t even know about to this day. Finally, in Dec 2012, when his kidneys finally shut down because he was so dehydrated from vomiting and I could no longer depend on him to make the right decision about his own health, I put my foot down and kicked him out of his own practice.
He has not been able to practice medicine since.
On Not Having Children
We tried for six months to have a baby after we got married. We even went to get some genetic counseling from neurologists specializing in migraines. It took several years before we finally accepted that we would not have our own children since we could not bear the guilt of passing this genetic disease onward. Sometimes, knowledge is not a good thing. So we looked into adoption. We looked into international adoptions. The irony was that Brian could not even fly on a plane to go pick up his child and we were restricted by the rules of international adoption. So we looked locally. We went through all the classes, all the criminal checks and all the waiting for ONE four- to eight-year-old who might benefit from our home. Instead, we had a worker who was not able to see Brian’s disability and we were in such denial of our own limitations. She presented with two troubled teenagers who needed a home desperately. We couldn’t say no. Like I said before, this would be our Achilles’ heel.
So a 14- and 16-year-old came into our home and we lasted six months. It was a heroic effort. We called upon the community, the extended family, the school, our colleagues and the church. In the end, we had to let our teenagers go. I remember standing there in the driveway, heartbroken, Amy’s hair dye in a bag and Aaron’s summer math homework in the other and just like that, our hope for a family went up in smoke.
So, we don’t have kids. We realized that we could be great parents but it wouldn’t be fair to bring a child into our home where we need silence when Brian is hurting, where there is no getting up early to watch cartoons, or Disneyland trips etc… It was a humbling realization. We have long learned that just because you can do something, doesn’t mean you should.
On Loss and Disability
I don’t even try to verbalize the degree of loss that we have experienced. On the surface, Brian seems like an able-bodied young man. Few people know that most of my palliative patients are functioning better than he does on some days and that he is using euthanasia-doses of meds. We have recently started to be more honest with friends and family about the degree of his disability. But we find ourselves editing info to spare their suffering. For Sunday night suppers, he would pre-treat so he can sit upright for two hours with his parents.
I don’t even try to explain to our physician colleagues what we are going through. Sometimes, they are the worst of the lot. We are hardest on each other and if you’re not pulling your weight, then you are dead weight. They look at Brian with envy. ”What do you do all day?” At times, I wish he were more honest. I often wonder how this response would be met. ”Pray that I could die because it would end my suffering and my wife’s burden.”
The Early Years of Caregiving
Initially, during those early days of Brian’s disability, I did everything.
I took over his medical practice but kept him as the owner. It’s a lot like our Canadian government where we have the Queen as our figurehead but she does nothing. So although I took over Brian’s practice responsibilities, I did not feel I had the power to make any changes. I had the unpleasant task of telling his patients what was going on when we didn’t even know ourselves! Brian had a big practice and managing the business, in itself, put enormous strain on our marriage. I worked 10-12 hour days while doing his call AND fulfilling my own contract obligations to other physician practices. I would leave for work at 7 a.m., come home at 7 p.m. and still have to manage the household. Often, at lunch, I would run home to check on him and then run back to work. I also worked on the weekends.
I would come home, cook dinner, clean up, made sure he took his meds, put him to bed, then do some work before collapsing in bed. I often got up every 3-4 hours, to give him morphine shots, make sure he was breathing. I went to doctor’s appointments, micro-managed when he took his meds, dropped off scripts, picked up meds. I did all the cooking, the groceries, the cleaning. I managed all the finances, went to the bank, made sure all the medical association dues were paid. I mowed the lawn, weeded the garden, shoveled the sidewalks. I even pushed to adopt some kids.
As a doctor, I also ran subcutaneous infusions at home. I learned how to do certain dental/facial nerve blocks. I remember that there was a power outage one night and I stuck a needle up my husband’s gums to block one of the nerves felt to be implicated in migraines, all while holding a flashlight between my teeth!
A Caregiver’s Exhaustion
I fell apart in October 2007. In my exhaustion, I had ticked off a patient who felt that I did not listen to his problem. He did not do what I had advised him to do because he did not, frankly, like me or my advice. He ended up with an unstable cervical spine fracture which was dealt with promptly. I was threatened with a lawsuit. Nothing came of it because it turned out that he was not compliant. I arranged for another doctor to assume care. I cried in that appointment with him and his wife. I had been a doctor for 3 years and on the verge of letting go. The Holy Spirit must have been with us that day. The patient came in very angry but he left saying, ”I should have listened to your advice and did what you told me, even though I thought you were rude and curt.” It’s amazing how far reconciliation and forgiveness can take us.
But this incident broke me. My husband was on over 300mg of methadone to manage his pain. I prayed that he would die because his suffering was so great that I wanted death for him so he could be spared his pain. Instead of starting our life, it seemed like we were better off dead. But this patient, who sat there with his wife, angry at me for how I made him feel, broke me. I felt that I had let him down.
Boundaries and Negotiation
Now in hindsight, I realized how incredibly hard we are, as caregivers, on ourselves and on our loved ones. I have since learned to set healthier boundaries, to say no more often and life is now a process of simplifying and letting go. It’s taken almost 8 years, but I now work 3 days a week. I let go of my active hospital privileges. My husband has learned to make some dinners. We negotiate a lot more. We have learned to be okay with “non-functional days/weeks.” We pace ourselves a lot more, take naps if we need to. He makes his own doctor’s appointments. He goes to the doctor by himself. He goes to Botox by himself. He is entirely responsible for his own meds, when they run out and when he needs them picked up or delivered. I ask if he needs help. He has learned to say he needs help more often. He has learned to say no to Sunday suppers if he really can’t (although he is still ridden with guilt for letting his parents down).
The early years were spent micro-managing everything (appointments, meds, treatments etc…). Now, I am merely the consultant, occasionally the voice of reason when he is irrational (for example, suffering unnecessarily because he is fixated on tapering off his opioids by 30% every 4 days and not being aware there are 2 people in this disease). I go to specialist appointments, if asked. It is his responsibility to ask for help unless he is being an idiot at which time I will step in.
Being a Husband and Wife, Not Just Chronic Migraineur and Caregiver
We had to learn what our new normal was. I had to accept that there are many days when I am a caregiver but I also need to be a wife, too. Brian also needed to be a husband. This disease takes away so much. It took away his ability to care for his family and this is devastating for anyone, let alone a proud man defined by what he does.
We now negotiate who can do what. Granted, I do the majority of the housework but he will go to Costco with me, then leave me to go to Walmart on my own. He mows the lawn (especially more enjoyable since he souped up our lawnmower run by solar panels). He will pay all the bills while I do the banking. I run the business now but he provides all the IT support. He does all the snow blowing although I do know how to use the snowblower.
Challenges of Caregiving
The biggest challenge for me, as a caregiver, is NOT to keep score and to recognize that when I am tired, I tend to think a lot more negatively. I have to trust that my migraineur husband is doing his absolute best and does not want to be the focus of the ”how are you doing?” conversation. I really strive to say ONE positive thing a day to him (I struggle sometimes because that silent conversation in my own head takes off). For example, when he is laid up in bed and unable to move, I would say, ”Oh well. At least you showered today. That’s good enough!”
Being a caregiver is transformational. It is a vocation, a calling, to be able to put aside our plans and to understand that finding joy during times of suffering is a divine gift. I do falter. Often. But I always check myself first and ask if I need to rest.
The Grass is Green on Both Sides of the Fence
I spent many years looking at our cohorts move on with their lives, having kids, going skiing, going on vacations and it seemed like we were stuck, waiting to start our lives. Now, I see that this ”grass is greener on the other side” mentality is detrimental to one’s self-esteem. I spent too much time looking in the rear view mirror and forgot to live. It’s weird.
Yesterday, we were sitting at Waikiki beach, sharing a shaved ice when I’m struck by the gifts given to us. My husband is withdrawing from opioids. He is clammy, sweaty, diarrheal, crampy but he was so excited to eat his shaved ice, he got red syrup on his nose! I look for these things every day, things I am grateful for.
I have to say that I am amazed at how I’ve developed my sense of patience and appreciation for the simple things we take for granted. Everyday, I look for a small thing that I could be grateful for even during the darkest moments.
Keeping a Sense of Humor… and Being Able to Say, “I’m Sorry”
Yesterday, Brian had a particularly hard day. He was withdrawing significantly and had a ’total-body’ migraine. We could not identify a trigger. We were grumpy, tired and fed up with this illness. We were in freaking paradise, for crying out loud! I was exhausted by the constant conversations about this illness, our plans for treatment, our plans for his health, his crappy genetics etc… He was equally fed up with his pain and suffering! I collapsed in bed while Brian looked for meds to treat his migraine. The last thing I said before I rolled over in bed was that the only cure for ’his affliction’ is decapitation!
”Love is patient, love is kind!” I recited these words during my wedding. How difficult it is to do. I am continually humbled at how this disease makes me practice how to love and be kind all that much more. I am most proud that this disease has not destroyed my marriage, although there are times when I wonder how my husband can even love me for the things I have thought or said. I suppose that’s why there is ”I’m sorry” and ”I love you” that one can use after one has wished decapitation on one’s spouse!
Their Love Continues to Grow
Migraine changes everything in your life and the life of those around you. I was never one of those feeble females who believed she needed a man to take care of her but there is still that ’Harlequin romance’ girl in me who wouldn’t mind if a strong-chested man swooped her off her feet every now and then. Well, it’s harder to do now when the bedside table is laden with pill bottles and not boxes of Kleenex!
This past February a week before Valentine’s Day, I had a particularly difficult period at work. I had several emotionally laden deaths of beloved patients and was feeling drained, sad, overwhelmed. I called Brian at 6:30 p.m. to say I was coming home and was venting about my day. He told me to drive safely and just come home. I arrived home to a candlelit dinner of leftovers and our darling shih tzu had on a shirt that said, “I love my mommy.” My husband was awake at 3 a.m. with a, what else, migraine and was net surfing when he saw this $3 doggy shirt on eBay so he wanted to surprise me. He’s usually sick on Valentine’s Day so he decided to have an impromptu Valentine’s supper. He swooped me off my feet that evening.
I love him more now with his broken and sick body than I did when we first met and he was strong and robust, working out at the gym and drinking his protein shakes. Now, he drinks protein shakes because he’s often so nauseated that it’s the only thing he can stomach.
Even though I am the caregiver and when we walk across the street, I am the one that makes sure traffic is clear, I have to consciously remind myself to let him be the man every now and then. This disease emasculates the strongest of men, often without an outward sign of its destruction.
A Message For Other Migraineurs
You did not ask for this disease. You didn’t do anything anything wrong. I often say to my husband when he is beating himself up, ”This is not gonorrhea. It’s not like you went out and got it. It just is. Bad luck or maybe it’s good luck because we would have been self-centered, greedy pricks!”
Stop punishing yourself.
Stop punishing your loved ones. And if you do, say sorry and I love you. Tell them why you are mad. You don’t need to bear it yourself.
Throw your caregiver a bone every now and then. It says ’I appreciate you.’
Ask your caregiver to take a respite from you. And mean it.
Take a load to the dump. Let go of your hurt somewhere else… at a counselor, your doctor, your massage therapist, Reiki master, internet pen-pal, the priest. Doesn’t matter. Clean your physical, emotional and spiritual clutter.
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