Why I Don't Live With My Husband

In the summer of 2013, after a lengthy recovery from a life-threatening neurological autoimmune illness, I was faced with a decision: return home to my husband, move into my parents’ home on Vancouver Island, or transfer to a Family Care Home (my own suite inside a caregiver’s home). I was newly disabled with limited mobility, and required 24-hour personal care and assistance. I chose not to go to my parents home for a number of reasons, but not wanting to burden them as they aged was the biggest one. I wanted to have a “normal” marriage cohabitating with my partner, but there were a number of reasons why that choice may have been more harmful than helpful, for both of us. I made the decision to move into a suite in my caregiver, Mira’s, home and I have been here ever since.

As it turns out, it was the best decision I could have made. Although it was lonely and difficult to continue to live apart from my life partner, it provided both of us with a kind of “breathing room.” When I first moved in, my needs were extensive and my mental health was poor. My ugly behavior and constant need for assistance pushed my caregiver to the limit. Mira is an incredibly kind, patient and professional person, however, and as I began to address my mental health and learned to adapt to my new circumstances, things began to improve for everyone involved. Because my husband was not burdened with the additional role of full-time caregiver, and I was not burdened with the guilt or stress that often comes with relying on one’s spouse for personal care, our relationship remained balanced and respectful, and our marriage began to flourish.

Over the last decade, we have adapted to our living arrangements, and learned to appreciate its value. One important value is the impact on our financial circumstances. As most disabled people know, living with one’s partner comes with economic sacrifices. Depending on your spouse’s income, government funded disability payments and supports can be severely clawed back. And if you’re both on disability, you are likely to be living in poverty. Because my husband and I don’t cohabitate, our income is as full as it can be under the circumstances. Currently, the program I’m in for acquired brain injury survivors covers the cost of room and board as well as personal care, along with a monthly comforts allowance cheque. My husband’s income covers his living expenses as well as some of the extra expenses related to my disabilities and equipment. We are still close to the poverty line, but living separately means we receive that extra little bit of financial support that makes all the difference.

Another benefit of living apart is the impact on our relationship. Don’t get me wrong: If I had all the supports necessary to do so, I would happily move back in with my husband. But there is something to the old adage “absence makes the heart grow fonder.” While we miss out on the little quiet moments of bonding that couples who live together experience day to day, we also rarely experience the small irritations and resentments that can occur when living with another human being. We never get sick of each other’s company, and because we don’t spend as much time together as we’d like, we don’t have the time or the inclination to focus on resentments. Like any couple, we have our disagreements and arguments, but they are short-lived. Through the various trials we have faced with my illness and rehabilitation, we have learned to communicate honestly and respectfully with each other to resolve our conflicts. As a result, our bond is strong, and most of the time we spend together is peaceful and happy.

In recent years, my husband’s life has drastically changed. For the first seven years of my disability, my husband was able-bodied and working full-time. Whenever I worked on a project, he would help with the physical labor (weeding and transplanting in the garden, hanging artwork, moving heavy items, etc). If I needed to buy something that was large or heavy or from a store that was far away, he would hop in the car and pick it up for me. He often helped me navigate through the world with its various issues with accessibility and inclusion. Four years ago, however, he was diagnosed with hepatocellular carcinoma (liver cancer). It is incurable, so he began treatments designed to keep the cancer at bay for as long as possible. The resulting pain and sickness meant he wasn’t able to work, so he went on long term disability, and hasn’t been back to work since.

A few months ago, we were informed that the cancer has spread to his lungs, and that he has less than a year of life remaining. His health has been steadily declining since then, and we are now in a position where I am helping him navigate life with illness and disability, rather than the other way around. Not living together has become much more challenging as a result. He is often not well enough to come visit me, so I will drive to his apartment (which has multiple accessibility issues) in my wheelchair, regardless of the weather, so we can spend time together. I will cook for him, tidy up, do his dishes, and help him in whatever way I am able. It raises his spirits when I’m there, and he always feels much better.

These days I find myself wishing my husband and I did live together. I want to be there for him whenever he needs me, and to reciprocate the support he’s offered me through the years. It breaks my heart that he’s often alone in his moments of greatest pain, discomfort and sadness. Because he’s always fatigued, he sleeps a lot, so it’s often hours before he’ll respond to my texts and calls. I get worried, and wish I was there to make sure he’s OK. I’ve begun to stay overnight on the weekend, and he helps me with my personal care as best he can. But each time, I return home fatigued and aching, and it reminds me of how much I rely on Mira for my daily needs, and how hard it would be on my husband to provide that care.

At this point, finding an accessible home and moving in together again is no longer an option. My husband will likely be going to a hospice in a few months and, although I have gained much independence and autonomy over the years, I am still in need of my current level of care. Fortunately my husband receives regular palliative care and counseling (covered by BC Cancer and Canada’s universal health care), so I feel confident that his health is being monitored. His brother, friend from work, and neighbor have all been kind and helpful, and have assured us that they are happy to assist whenever necessary, so I’m grateful we need not struggle alone. Our bond is tighter and our marriage is stronger than ever. We still remember to appreciate each other’s strengths and thank each other for the things we provide for one another, and we spend many hours chatting, laughing, or just vegging out in front of the TV, enjoying each other’s company.

So instead of fretting and lamenting over our living situation, instead of yearning for the things I may be missing while away from my husband, I am trying to appreciate what we have gained, how we have grown, and how our relationship has endured and strengthened regardless of adversity.

Do you live apart from your life partner? How has it impacted your lives and relationship?