My husband wrote So, Your Partner is Disabled because we wanted to offer a firsthand perspective on what it’s like to become your partner’s caregiver and how to best balance this with your relationship. It’s not that we have all the answers or that our caregiver/spouse relationship is perfect; it’s not. We’re learning to work things out along the way and that’s OK. We just hope we can help iron out a bump or two for some other couple doing the same delicate balancing act.
My husband and I met in 2004. I was already sick at the time, but I still had no idea what was really wrong with me and I was far from being ready to let it stop me from my professional and academic pursuits. Still, I developed a rare form of kidney disease back in 2002 (at the time I was certain that was the disease that was going to kill me—ha ha, I wouldn’t be so lucky), I caught every little bug that came my way, had tendonitis in no less than 4 different places on my body in the preceding 3 years and I had days that my whole body ached for seemingly no reason at all. I was certain that any day I would discover I had inherited my mother’s lupus.
Despite the newness of our love and the depths of my affection for him, I had to be completely honest with him about my potential future. He insisted it didn’t matter; he’d love me whether I was still hiking at 80 or if I was in a wheelchair by 40. I scratched my head a bit, but decided to take him at his word and we were married in February, 2006.
As it turned out, I was right to take him at his word, even if it was a perspective I didn’t fully understand. I’d already had a relationship that was single-handedly decimated by chronic illness. Really, it wasn’t the illness I couldn’t handle; it was the codependent relationship which the illness nurtured (combined with a history of codependence I’d done years of therapy to change) and our inability to find a way back to a healthy, more equal relationship. I suppose this is why this subject is so near and dear to my heart. When I was in his position, I failed miserably and lost it all. I gave myself over entirely to her care, and she became so used to depending on me for her every need the she no longer knew how to live independently and I no longer knew how to respect her as an individual.
It took me years to overcome that failure and stop blaming myself alone. It takes two to do the codependence tango, and we kept up with each other step for step. The experience left me convinced it’s impossible to have a healthy relationship when it’s inherently unbalanced by illness. If it didn’t work for two women in a relationship structured by our strong feminist sense of the equitable distribution of power, surely few people could truly manage it.
I suppose this put me a bit ahead of the curve when I faced the inevitable decline in my health, even if ME took the place of lupus. My experience with my ex was a guide for what NOT to do when I was in the position of needing regular assistance from my husband. Now, it is the combined experience of both relationships and roles as patient and caregiver which form my knowledge and experience. Here’s my list of do’s and don’ts based on those experiences.
Talk, Talk and Talk Some More
I’m amazed how often people jump into these roles without first discussing what their picture of what a caregiver looks like and their own expectations about how things are going to work out. Of course there are the practical matters to discuss, but also be clear about your needs and their boundaries. If your caregiver is picturing your needs as getting you some water from time to time and you’re picturing Florence Nightingale, you’re both in for a rude awakening. If you talk about it from the start you can evaluate everything together and make decisions you’re both comfortable with.
Always be honest about your needs and your boundaries from the start and ask them to think about their own. Do you need to hire in-home care to take some of the load off or for when your spouse is at work? Do you need someone else to cover your doctor’s appointments because your partner can’t always get away from the office? Evaluate these things regularly, get any additional help you need lined up and make changes as necessary.
If they can’t be there as much as you’d like, be patient with them and try to do your best to work around it by requesting in home help through your doctor. Oftentimes these services are covered through insurance, Medicaid or Medicare. Sometimes there are volunteer organizations you might be able to utilize in your area, as well. It’s just not in everyone’s nature to be a caregiver and my guess is you already have a good idea what your challenges are going to be. Try to expect the least and be pleasantly surprised if you get more.
Do as Much for Yourself and Your Home as Possible
If you have a chronic illness of any kind, you likely have good days and bad days. Take advantage of the good days to give your caregiver a break and do a little more for yourself. Just because they’re always there when you expect them to be doesn’t mean you should ask them to do the same thing day in and day out. As much as we need a vacation from our suffering, your caregiving spouse needs a vacation from you (even if it only lasts a few hours). You’ll not only make your caregiver a happier, more balanced individual, you’ll feel good about what you’ve managed to accomplish on your own.
Another possibility is to take on certain jobs within your ability levels that used to be taken care of by your partner. While I can only contribute nominally to the cooking, shopping and cleaning anymore, I take care of the finances, do online shopping, earn swagbucks for giftcards, organize and order my own medications, research any major purchases we are going to buy, do the upkeep and maintenance on our computers and maintain an extensive list of TV shows, tracking their premier dates and where we watch them since we “cut the cord” and started getting the bulk of our shows through hulu, Netflix and other apps on Roku. I also cook lunch instead of dinner so I still have the energy to stand for a few minutes at that time of day and it’s a lot quicker than fixing a dinner meal.
Doing these things takes the stress off my husband and allows me to continue contributing to the household in some way. On the days I can’t even get dressed, all bets are off, but most of the jobs I do can stand to be neglected for a few days so long as I plan carefully.
Expect Less, Be Pleasantly Surprised by More
Probably one of my biggest challenges is accepting that things are no longer going to be to my strict specifications. Yes, you guessed correctly, I’m the worst of the worst, a type A perfectionist with very specific ideas about how my world is supposed to look, feel, and operate. My house should always be tour ready, my personal grooming should never be anything less than model ready and I should have boundless energy to spend on my myriad professional pursuits with ample time to taste all the adventures the world has to offer. My dinner should always be expertly prepared by my own hands. Anything worth doing is worth doing well. Can you imagine what a nightmare I became when my abilities no longer matched my world view?
This has always been a problem for me even before I was ill, because as a feminist I refuse to buy into the notion that cleaning is “women’s work” and have always insisted on splitting the housework up with my partner and/or kids….. to my strict specifications. My husband and I get along so well because he’s not type A, but he’s pretty conscientious and seems to be happy enough to meet my rigorous standards. In exchange, I’ve learned over the years to let go a little and change some of my more annoying, less necessary desires for perfection, but it’s always a work in progress.
I’ve learned to deal with the fact that sometimes the carpet looks dirty before we (mostly he) get around to vacuuming and sometimes the dust builds up. I’ve learned to go to sleep with a few dishes in the sink, and to let laundry pile up a bit. I’ve learned to be seen in public in yoga pants and sweatshirts. I’ve learned how to deal with dry shampooing my hair and sink bathing from time to time because I can neither stand long enough to shower or sit in the tub without suffering extraordinary pain. The biggest thing I’ve learned is to expect less from myself, to be satisfied with what other people accept as good enough. I’m still learning to be patient when he has to do something new for me and to write out instructions when things get too complicated, even though writing is painful and sets off my tremors.
Just realize that like you can no longer count on your own body to do all the things it used to, you can no longer expect things to be done “your way” everyday because they’re being done by someone else now. It’s OK—and even encouraged—to ask for things to be done to your specifications, but try to be satisfied with something that comes close when you can be. You don’t always get a choice in things anymore, be happy that your caregiver is making a true effort to do right by your requests, even if they miss the mark a little or it takes a while for them to get around to it or get the hang of it.
Ask When You Need It
Don’t assume your partner will intuit when you need something or get upset because they just walked past your empty glass and didn’t think to pick it up and fill it for you, or whatever the case may be. They have a lot on their mind and it’s not their job to know what you need at any given moment. It might also help you avoid some of that codependent energy by maintaining some control. That way, you’re only asking them to do for you when you truly need it rather than out of habit. They aren’t obligated to help you, really. You don’t pay them. They’re there because you love each other and do for you because they care about your wellbeing.
Don’t Use Your Caregiver as Your Punching Bag
It sounds like this goes without saying, but it’s easy to let your temper get the best of you when you’re in pain, feeling hopeless, and resenting the need for help. Really, you’re angry at your illness and the position it’s put you in, but it’s very easy to transfer those feelings onto your caregiver. Take a moment to remind yourself that they’re here to help you and they’re on your side; rail against the illness, not the only person who’s stuck by side through every ordeal.
If you slip and find yourself throwing the remote while screaming “Get the fuck away from me! I’ve had it with you,” or some such venom spewing from your lips, take some time out at the first available moment to take some calming breaths, meditate, or do some yoga and then think about what’s really bothering you and share it with your caregiver along with a sincere apology for taking it out on them. They have a pretty good idea of what you’re dealing with, so if you don’t let that rage monkey free too often, they’re pretty likely to accept your apology and be ready to move on.
This is a two way street. If your caregiver gets frustrated and is less than enthusiastic about helping you sometimes, you need to take up the empathetic position and understand what they’re missing out on to be by your side. Your lives have changed drastically, the roles you’ve played for each other have been altered and quite frankly, they could be at a Bengals game drinking beer and chanting “who dey” if it weren’t for this miserable disease. They’re entitled to these feelings. Let them have them, share them and excuse them when they occasionally have to be the one to say “I’m sorry.”
Surprise Your Caregiver with Little Things That Say “Thanks”
There are so many ways we can make the job of caregivers easier. Communication, understanding and empathizing what they’re going through is only part of the picture. Be sure your caregiver knows how much you appreciate all their efforts not only by telling them, but with how you treat them and what you do for them. So you can’t cook a big gourmet meal for them, take them dancing or spend hours making love in front of the fireplace anymore. There are many other ways to let them know you love them. Send them an e-card (or ask a family member or friend to take you out or pick one up for you). Write them a letter telling them all the ways you love and appreciate them or write them a sweet poem (it doesn’t have to be a masterpiece). Create some kind of craft for them within the limits of your ability whether it’s a string of origami cranes or a landscape painting. Buy them a little surprise gift from time to time while you’re shopping online like a book, some costume jewelry or something they collect like sports memorabilia or figurines. Go out to a theater with them on a day you feel well enough and let them pick the movie. I took my husband to see a special screening of a Dragonball movie a few months ago and I couldn’t be less interested in anime. He still talks about it like it made his year!
Finally, Remember Why You Fell in Love and Keep the Important Stuff Alive
When your partner becomes your caregiver, the lines can begin to blur and the shape of your relationship will inevitably change no matter how hard you try. Trying to nurture the relationship makes it more likely that you’ll succeed in maintaining a healthy relationship. If your common interests used to revolve around activities you can no longer do, try to find new intersections of interest to share with each other and be open to allowing your partner to do some of the things he or she loves without you. It can sometimes be painful and a little lonely at first, but they deserve to keep enjoying those things in their life and again, the time away will be good for their mental health. They’ll likely return with a healthy glow and some good stories to share and you’ll be glad you were so magnanimous about being left alone on a Saturday night. I like to use this time to write, paint, read, or watch movies or shows my husband isn’t interested in. It’s also a good time to invite one of your own friends over for a brief visit or de-stress in some other way.
Sex is often difficult with chronic illness, but it’s rarely impossible. Change your sexual relationship as you must, but KEEP TRYING. You will eventually hit a new normal in this, as in all things. At first, initiating sex when you feel well—even if you aren’t usually the aggressor—can help your partner overcome some of their anxiety about it. It helps them to know you still find them desirable and don’t see them as just a caretaker anymore. Even if sex is no longer an option, we all need to be touched. Spend time cuddling and sharing affection in mutually agreeable ways. Just because your body is different doesn’t mean your basic needs will change. It’s a hard row to hoe, but one that’s usually quite worth it. If you have to skip some chores or some other activity to have the chance to be intimate with your partner, talk it over with them. It’s not unlikely they’ll find the trade-off more than fair.
What are some of the ways you nurture your caregiver? How do you work to maintain a healthy relationship with your disabled spouse? Please let us know in the comments!