5 Things I Wish You Understood About Being a Caregiver

My life is 80% sh*t
As much as up to ten hours of a caregivers day is dedicated to maintaining the bowel and bladder program of their loved one with a spinal cord injury.

Spinal cord injury advocate Dan Griffin recently wrote a great post about the commodity of time as a side effect of paralysis. He writes:

I am often asked the most difficult part of living with a spinal cord injury, and my answer is always the same: it robs me of time.

The loss of autonomic functions — not simply the inability to walk — robs people living with paralysis of time. The ongoing management of body temperature, sexual function, bladder and bowel shave hours off our days; sometimes full experiences from our lives; and if ignored, the possibilities of far more permanent loss.

The fact is paralysis alone will not kill me. The secondary conditions of paralysis, especially without steadfast management, can kill me, and, because an injured spinal cord struggles to communicate with the brain to operate a host of bodily functions most of us take for granted –too often, they do contribute to death.

The greatest portion of my time is dedicated to maintaining my husband’s secondary functions. Too often the responsibilities and burdens of life force us to choose between maintaining my husband’s care programs and performing the roles and responsibilities the way the rest of society expects. Those choices are quite literally life and death.

The rest of what I’m about to say comes from my perspective as a wife and caregiver. Caregivers come in all relationships, and there are thousands of ways in which we can become a caregiver for our loved ones. We all have things as caregivers we wish that non-caregivers understood, and as I wrote this post I thought about how I wanted most to impact those of you who read this. I thought about being general and expressing the things that might affect all caregivers. In the end, I decided to be candid and speak openly about the things that wish you most understood.

Don’t expect me to be on time, and cancellations will happen…often
The young, single me was always on time. Growing up, I frequently remember my mother running late for everything. Other mothers openly blamed their frazzled, bedraggled, and harried look on their children, but not my mother. She was a proud badge wearer of “I’m late of because of who I am as a person” and I always respected that.

In the beginning I was always on time too, quite proud of myself for being able to get both myself and my husband ready, and all that entails, and showing up on time and in perfect order. As I’ve gotten older…well…that’s gotten just a little bit harder. There’s his bowel and bladder program; morning and evening stretching; dressing him (which is equal partS dressing a large limp body and a struggling, flailing 6-foot tall two-year old all at once); the morning and evening ablusions; preparing breakfast, lunch, and dinner; medications; packing for the necessities for a day away from home and include everything from catheters and all the many supplies that come with it, to medications to all the many accessories that a quadriplegic may use to maintain bodily stasis, to packing entertainment.

By just the end of the morning I may very well have performed five transfers, completed a morning stretching routine, completed just one of the day’s bowel and at least two bladder routines, given him a bath, dressed him, fed him, and all before most of you have even gotten up to start your own morning routine. Then I have to get myself ready!

Years of physical care takes a toll on the caregivers body.

Gallup researchers found that caregivers have both worse physical and emotional health than non-caregivers. What’s more, a study by the Center on Aging found that more than 1 in 10 caregivers say that the role has caused their own health to decline. 

To put it simply: I’m tired, worn out, and frankly emotionally done with the damn day by the time I’m putting my mascara on, so don’t bust my chops when I’m late. It takes an act of a goddess to get me there, be happy I showed up at all. Now, I’m late because of who I am as a person–a caregiving wife with duties and a schedule you couldn’t possibly understand till you’ve lived it and I do it every day.

Let’s just go ahead and throw in there that cancelations will happen, also. We go to great pains to maintain my husband’s health, but you know that old adage–sh*t happens. Whether it’s my health that’s taken to the crapper or my husband’s, or one of the literally thousands of things that can go wrong when a spinal cord injury has interrupted the body’s super communication highway, just go ahead and expect that our plans with you may be important, but they come second in the grand scheme of things.

Marrying my husband was not an occupational hazard
People are so mystified by the idea that a person in a wheelchair could be married that they will literally concoct any possible solution to explain why I’m in any proximate area to my husband. The more sensible solution is that I’m his nurse; but this idea that the wheelchair-using man beside is my husband is just so out there, too hard to believe, that I’ve actually been asked if he is my child. Mind you, not that I look old enough to have a 36-year old child, nor is it even questionable to them how a fair haired, blue-eyed me could have birthed a very obviously Asian son–THAT idea, to them, seemed far more plausible than the idea that I actually married him.

I was not, nor have I ever been, an occupational nurse. I say “occupational” because at least fifteen percent of my life skills require me to have nursing knowledge under my belt in order to care for my husband. The other five percent requires me to be a doctor. However, I didn’t go to school to be either;  I didn’t meet my husband in a hospital or in therapy; marrying my husband wasn’t an occupational hazard.  I married my husband for the same reasons  any girl does–he came with cool accessories.

This IS my full-time job

Family caregivers frequently have to leave their jobs, reduce their hours, or retire early. According to a poll of caregivers by Gallup, the majority of family caregivers report that their role has negatively impacted their career. Furthermore, the MetLife study mentioned above found that the average caregiver’s lost wages are $143,000.

In sickness and in health, everyday my life is an exercise in the vows I took. I will frequently miss work, sometimes for weeks at a time, other times for days at a time every week for months, and there won’t always be a doctor’s note because much of the time we are on our own. If you’re lucky, before your loved one leaves the rehab hospital, you’re given a crash course in care. Then you’re sent off into the world to figure the rest out on your own. This is because insurance has determined you responsible for managing the rest–until it becomes unmanageable. That leaves a lot of time between when I start care and when seeking medical care becomes available.

It’s not just medical emergencies that will cause caregivers to miss work. Maintaining my husband’s normal bodily functions takes a team of medical physicians from several disciplines. Life can feel like an endless parade of doctors appointments, medical tests, and bouts of physical therapy. Regular wheelchair maintenance and repairs can leave my husband without his chair for a day, several days, even weeks at a time. During these times I may be his only source of movement.

In any given year, I may miss more days of work in my role as a caregiver than I will actually working in the workplace. The impact this has on life includes: lost or lowered wages; increased workplace stress and resentment; lost opportunities at job advancement; and eventually unemployment.

Keep in mind, us wifely caregivers are oftentimes doing all by ourselves the care that takes an entire hospital staff in shifts to do for our loved one.

I’m a caregiver, but I’m also a wife 
Being a caregiver and a wife is not mutually inclusive. Intimacy is often a casualty of caregiving. It’s hard to truly explain this if you’re not living it. Marriage ties people together, their very beings become a shared entity. Your dreams are tied together, your hopes for the future are tied together, your well-being is tied together. When one of those things dies for one partner, they also die for the other.

Aside from the obvious aspect of physical limitations playing a role in how intimacy works in a relationship, the many artificial methods for maintIning bodily functions after injury can also affect intimacy. Very easily the caregiving spouse can begin to feel like the nurse–detached, sterile, and clinical. Moreover, after a long day of providing care for your loved one, your own body can feel physically and emotionally drained. No amount of ambiance, afrodisiacs, or playful banter can overcome exhaustion.

On the flip side, if you are able to overcome those obstacles, you are only part of the battle. So much about our sexual encounters is about our own ability to perform in ways that please our partner. Injury can often take that away from our other half. As a wife, reassuring my husband of his prowress is of the utmost importance; as his caregiver it’s my responsibility to adjust the situation to provide for his needs and abilities. Switching between the two roles can dampen the mood.

Our whole relationship’s equilibrium is directly influenced by my husband’s needs and care. Our whole lives can be thrown off when changes are made to his care plan, when medications are changed, when new schedules are created, when further injury or new illnesses creep up. New stresses can create an imbalance and our whole life cycle flipped upside down. Our roles within the relationship can be changed, our bonds stretched or broken, and coming back as husband and wife and not patient-caregiver is a challenge.

Doctors will most often choose a method of care and it’s care plan based on what they feel has the best long-term potential, is least likely to cause additional infection or injury, and if it can be maintained by a nurse or the individual that’s even better. However, they rarely take into consideration the effect it will have on a marriage, on its intimacy. Every decision we make about my husband’s care has to look at both sides–what is best for his care and what is best for us.

I am still an individual in this relationship. I come with my own set of needs and desires. Some of these I have to consolidate as impossibilities, but others I have to fight for; I have to stick to my guns and demand before friends, family, doctors, and the rest of the outside world that I may be his caregiver, but I’m also his wife and I deserve to be treated as so. I’m not part of his science experiment; you don’t get to ask me how our intimacy works; and you certainly don’t get to make me feel guilty for wanting to be a wife first and caregiver second. I am and always will be the most important relationship my husband will ever build with his own two hands in his whole life. I am the vessel that provides him his future. I am his connection to the past that raised him and the bridge to the future self he will become. I am the heart he whispers his hopes and dreams and fears to, and I’m the one that encourages him on his path to conquering them. I am a wife.

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