This post was coaxed onto paper by a Facebook meme that showed an elderly man rocking his frail, ailing wife, with the caption: ”Would you stay with your spouse if they became disabled?” Of course, most people answered yes. What bothers me about that meme is it showed only a small part of what’s involved in caregiving. Yes, you may rock your loved one, but in the next moment you’re cleaning up a soiled diaper or enduring a temper tantrum.
I have been a caregiver for my husband for most of the past year. He does not have dementia and is not totally disabled, so I cannot even begin to speak for folks who are handling those issues with patience and grace. What I can speak to is simply my own experience—my own terrifying, gratifying, funny, maddening, frustrating, exhausting, loving experience.
My husband has had chronic health conditions for a number of years. He suffered a cardiac arrest at 49, followed by several heart surgeries. Although it took him months to recover, he was able to return to his consulting business, and we resumed our relatively normal lives. There were reminders of his fragility along the way: surgeries that required longer than normal recoveries because of his ongoing need for blood thinning medication, a heart attack scare while on vacation (which turned out to be gallstones), his implanted defibrillator going off 6 times while he was walking alone in the woods. For the past 20 years, both of us must have had an extraordinary capacity for denial given what was always hanging over our heads.
A year ago his illnesses began occurring more frequently, he was always tired, and the glass half empty part of me kicked in big time. I knew something was wrong, but both of us kept shoving it under the rug, hoping it would go away. We soldiered on until summer, when he had minor outpatient surgery for a gastrointestinal issue. He seemed to be recovering, although still experiencing pain, until one night in late July when I left choir practice at church to find a string of voice mails and text messages telling me I had to “come home right now. I’m bleeding and need to go to the ER.” I arrived home to find a bathroom that resembled the murder scene in the movie Psycho and immediately called 911.
The next few weeks were a blur that included the ICU, a ventilator to help him breathe, 12 units of blood, bedsores so bad that one nurse said she hadn’t seen worse in 30 years of nursing, many nights spent in a chair next to his bed, standing up to/questioning an array of doctors from every imaginable specialty, facing several times the possibility of his death from either blood loss, multiple organ failure or septic shock from the bedsores, and trying to encourage him to participate in a rehab that he initially wanted no part of. I couldn’t blame him for not wanting to go forward, yet I knew if I didn’t push him, he might die.
Watching him in rehab, where he was sent because he couldn’t even stand up without 3 people holding him, gave me some inkling of what I was in for once he came home. Because of the bedsores and the peripheral neuropathy (diagnosed much later), he couldn’t bear to be touched but still needed to be changed and cleaned since he was unable to get out of bed or even use a bedpan without a lot of assistance. The rehab staff nicknamed him “Oh God” because while they were trying to clean him up, that’s what he repeatedly yelled so loudly that the other patients on the floor closed their doors.
One time I came in just as they were starting the procedure and decided to leave to give the 5 or 6 people enough room to maneuver. One of the nurses said, “Where do you think you’re going?” I replied that I wanted to get out of their way and wasn’t good with that sort of thing anyway (messy, smelly). She said, “Well, you had better get used to it. Who do you think is going to take care of him after he comes home?” That was the day the reality of caregiving began to sink in, and it did NOT involve cuddling in a rocking chair.
He came home barely able to stand up even with my help, and as the wheelchair, hospital bed, walker and other equipment was delivered, I sank into a terror I have never felt before. I’ve done a lot of “scary” things in my life, including foreign travel, public speaking, working in a steel plant, getting an advanced degree and playing an instrument in front of hundreds of people, but this was different because I had absolutely zero confidence that I could pull it off successfully. They don’t send you to caregiving school and give you a certificate of completion. If you’re lucky, a health care worker gives you a 15-minute lesson on how to do everything from helping someone shower when they can barely stand up to how to manage enough medications to stock a pharmacy.
Here are just some of the things no one tells you about caregiving:
One thing everyone does tell you is that you must take care of yourself, and while that’s good advice, you have to wrestle with it in your own time. In the beginning, taking care of yourself might mean getting more than 3 hours of sleep or eating an actual meal, uninterrupted by someone else’s needs. Later, when you realize you really do need to have a life apart from caregiving, it might mean having lunch with a friend or going back to work and calling upon others to give you a break.
Perhaps my biggest learning is that caregivers must ask for help. This has never been easy for me but I had to do it, both for my husband’s wellbeing and for my own sanity. Most of the time people are quite willing to lend a hand, whether family, friends or neighbors. If you can afford it, pay for trained aides. I am grateful for all the folks who helped us get this far. Although my husband has improved greatly, I know we will face additional health issues in the future and I will need to return to full time caregiver status. And yes, I would do it all again, because that’s what it means to love someone. Nobody gives you all these details on your wedding day but maybe they should.
Author’s Note: Since this post was originally published, my husband’s health declined again, and he passed away during the summer.
Originally published at marywilsonsblog.wordpress.com