This post emerges from the truly shocking discovery that neither doctor nor hospital staff gave FF and me even one jot of advice about how to deal with me, a newly disabled person, at home. All we got was a poorly xeroxed set of discharge instructions designed for a person who had just had ACL knee surgery, a document that was utterly useless to us. This post is my letter in a bottle for anyone who has just broken a limb, especially a leg, knee, ankle or hip. Here's a list of things to do that will shorten your timeline to getting better and improve your experience of being disabled at home. I hope it helps.
It is two months since my accident. My main social events of the week are a couple of visits to physical therapy, assisted by my fabulous neighbor Denton, and dinner at the Eagle Diner with my patient husband and, lately, caretaker FF. One of the thing I deal with most is loneliness. Poor FF said the other day, "But are you lonely when I'm here?" and the answer was no and yes. Of course, his return from work is the high point of my day. But there is another loneliness which comes from the loss of freedom, the loss of random artist walks to nowhere, the loss of random conversations with strangers and less random, deep conversations with true friends and kindred spirits. By necessity, this has been an experience of going inward and though my mind says it will end someday, right now my isolation feels eternal.
Life is slow like healing is slow. I cannot see the slow knitting back together that is going on in my ankle, now anchored together by two titanium screws and a couple of nuts. “I had to put nuts on,” my young orthopedist said in an odd boyishly amazed way, as if normally he can screw other people back together without nuts.
I still cannot walk. I hump around on crutches, and we took the rental wheelchair back yesterday. We used it so rarely that it didn't seem reasonable to keep it for another $80 rental: We are looking forward to seeing me walk again, and soon. We hardly used the wheelchair because the streets here in Tiny Town are too darn out of whack with level to make wheelchair transportation possible, though every corner has the legally required ramp. The one foray we made with the chair almost turned into a squabble between poor FF and me since I kept shrieking in fear as he pushed me down brick sidewalks that sat about a 30 degree angle to the street. “Don't ever yell at me!” he admonished, in totally uncharacteristic annoyance as he sweated bullets trying to keep the chair going forward. “I will if I think I'm going to fall, you bet I will!” I retorted, wiping the cold sweat of fear from my brow.
But truly FF and I have done pretty well with this massive interruption to our lives. We've adjusted to a new schedule, new tasks (for him), new isolation (for me), and most of all We Are Getting Through It. I am not going to pretend that shattering your ankle and breaking your leg is a recommended route to intimacy, but once you get there you will either find that you manage it with your partner or you don't. And once you've gotten through the worst of it, you realize that you've actually achieved something worthwhile together.
FF and I had to change things around a lot in order to make the house manageable (at all) for me, so here in this post I offer you a checklist of the first things you should do when your partner breaks a leg or becomes non-ambulatory.
Put on your seat-belts: This is going to be a long, bumpy ride. Caretaker, things you are used to from your now-injured partner like smiles, laughter, sex, encouragement, house-cleaning, laundry, companionable shopping trips and more, will absolutely disappear from your life. You will either tend to start feeling resentful about all the care-taking, or you might like FF become the best caretaker the world has ever seen and start ignoring your own health and well-being. Neither of these options is preferable. The caretaker should try to keep some of his own self-care routine going, despite the fact that there is a person stranded at home in bed who you know needs help and attention. You have to keep yourself in good shape in order to be useful to your partner.
Caretaker: Take the first injured week off from work. The patient is going to need you in every possible way, and unless you can afford home health care, you have to be there. There is a lot of set-up to do, and you are both going to be exhausted from the many nights of interrupted sleep (pain meds every 3-4 hours), the worry and the whole change in your routine as you learn to handle all the household chores alone AND take care of a sick person. Make no mistake: You will need the time to adapt.
Buy, do not rent, a toilet seat riser. The first time I laughed after the accident was when I saw that the toilet seat riser FF had bought was called DRIVE. It made me feel as if we were going to go somewhere, and fast! Here's a picture of it (above): it screws easily onto the toilet. Get just one for the toilet that the injured person is going to access most often, especially during the night. It is easy to install, does no damage to your commode, and it saves the patient from long painful (and dangerous) descents to low toilet seats, and even offers hand grips to make the descent easier. Oddly, you will get used to it and eventually wonder why toilet seats are so low, anyway. One drawback: The seat may loosen after a while, so keep tightening the plastic nut at the front of the unit to prevent accidents.
Buy, do not rent, a plastic and aluminum shower chair. The thought of renting such a thing is pretty grotty, isn't it? Even though of course you could clean a used one within an inch of its life, but somehow....ick. It will be a while before the patient can shower at all, but when he can the warm water and soap will feel like really good sex, the first pleasure he has felt in seemingly forever. So it's important to get a good steady, comfortable one with big, fat rubber feet so it doesn't scratch your tiles or the surface of your tub. This little gray shower chair (also by DRIVE) continues to be helpful, even though I can now lower myself into the tub to take a soak. I use it to sit in for my evening ablutions and its sturdy, four-square frame never wobbles or makes me feel afraid.
Buy multiple re-freezable ice packs. The injured person is going to be icing for MONTHS multiple time a day, and is going to need to cycle ice packs for use at all times of day and night. We recommend the flattest re-freezable packs you can get. Traditional ice bags are OK for the road (because you can refill them anywhere), but flat re-freezable packs in small cloth bags are the best because they don't leak, they are thin enough to wrap around the offended limb, and they freeze up again quickly.
Buy an extra pair of crutches. Aluminum crutches are cheap and it is valuable, especially if your house has more than one floor. Ours has FOUR floors, so one pair of crutches lives on the third floor where the bedroom and master bathroom are and where I've been spending most of my time, and the other lives on the first floor where the kitchen and guest bathroom are. Proximity to the bathroom and easy access thereto are things you will start thinking about the first time you realize that you have “waited too long” on a floor with no bathroom. Which brings me to my next point:
Get a quality bedpan. Sure you can take the cheap plastic one from the hospital (for which your insurance has already paid top dollar anyway), but get a slightly better one for the home. First of all, you don't want to pee all over your bed in a place where there are no nurses to quickly change the sheets. Secondly, at the beginning of your ordeal there will be times when you are too exhausted, too in pain, or simply too drugged up to make it the 12 feet to the toilet. Which means that you will have to...
Get over your shame. Injured person, you have no shame anymore. Before this incident, I did not even brush my teeth in front of FF. And after this is over, I will likely go back to this formal approach to our relationship. But no one knows if he will ever be able to scrub from his mind the image of me shifting onto a plastic bedpan in the middle of night while moaning in pain, and him carefully carrying off my effluvia to the bathroom for dumping. We were only six months married when the accident happened, and I really felt as if the honeymoon had ended quite too soon. But there is nothing you can do about this reality, and trying to preserve humility will only cost you valuable physical and emotional energy. Just remember: You have no more humility. You've been carried screaming down the street by EMTs, had your pants cut off, your leg opened up with a knife, had a stranger change your menstrual pad, vomited for 5 hours straight in public. You have no more humility. Accepting this truth will free you.
Drink prune juice. Lots of it. Everyday. They will give you Colase in the hospital to counteract the constipating effect of the insane amounts of narcotic flowing through your system, but that's like using Drain-O on concrete. Really. Take the Colase, sure, but for that first month you better be swigging down the prune juice like a prune-aholic because if you don't, you will not, er, eliminate. Which will make you feel sicker, grumpier and more screwed up that you could possible imagine. An elderly woman and I were actually bonding the other day at physical therapy over this experience. "I was so plugged up I was vomiting," she remarked in a normal tone of voice, and we rolled our eyes over the shared experience. I understood because my first satisfying trip to to bathroom happened a MONTH after my surgery, OK? So heed my words. Prune juice. Lots of it.
Buy high quality clotheslines rope as a crutches elevator. It's a simple fix but it works. Firmly tie a long piece of clothesline rope on the balustrade of each floor in your house so that, as the injured person begins to push himself around the house on his bottom to get from floor to floor, he will be able to move his crutches up and down easily by lashing them to the rope and pulling them up or lowering them down. In our four floor house, this was absolutely essential and was also useful for lowering and raising shopping bags of items up and down the stairs when my partner was not there to help.
Rent a small refrigerator or at least have an Igloo cooler available. You are completely immobile, which means you will not eat if food and drink are not within reach when your caretaker goes back to work. I, the patient, resisted the refrigerator because I didn't want another humming thing in the bedroom and I was concerned that it would leak on the floor, smell, or be difficult for me to access (too low). As a result, however, FF had to pack a cooler and a snack bag every day for me so that I had something to eat and drink when he, eventually, went back to work. FF's little love packages of yogurt, berries, tiny whole wheat breads and cheddar Goldfish crackers made my life worth living for a while there. But if you have room, by all means, rent a small 'fridge to save the caretaker the effort of packing a picnic cooler every day. Place it at waist level on a small table so gimpy does not have to bend.
Rent a wheelchair. It's true, we didn't use the wheelchair much (also made by DRIVE), but hell it's only $60 a month plus $20 for the leg-lift thingies. The few outings we made were absolutely necessary for my sanity and, after we learned that the best outings were to evenly paved places that we'd never visit normally (like school parking lots), it gave the patient a chance to breathe fresh air, see the sky, and feel a little hope. A wheelchair could also be used on a trip to the mall, if that is something you like to do. For me, injured, going to a mall seemed even less attractive than it usually is (which is to say, almost not at all). But it may be good for kicks and giggles for you!
Learn to meditate. And if you do already, meditate. Every time during this process when I have had the presence of mind to listen to a Pema Chodron tape or a talk by Krishnamurti on You Tube, or just simply sit and follow my breath, it helped a lot. The difficulty is getting yourself to do it if it's not a habit. Try to make meditation part of your healing routine because you, the patient, also have a responsibility to not go completely wacko on your caretaker. I can tell you from first hand experience that going wacko is something you will most definitely do at some point or another. So...
Learn to forgive yourself . At various moments during recovery from an awesome injury like a broken leg, both patient and caretaker will lose it in some way. When you do, because you certainly will, calm down and forgive yourself. Of course, being kind to one another is always important, but now you need to be really conscious of it. Caretaker, try to imagine the outlandish pain, fear and frustration your partner is enduring and show compassion. Patient, try to imagine the outlandish pain for you, fear for you and frustration your partner is having and show compassion.
Develop healing rituals. FF and I now have a variety of healing rituals that were developed through all the aspects of this process. I won't detail all of them here because, darn it, some of them are pretty personal. But, for instance, he bought little flashlights with red flashers on them and would set them up in the path to the bathroom so I could see in the middle of the night without having the deal with the blinding overhead lights, a little nicety that meant the world to me. We have our own method of getting me upright which is like a cozy hug from behind, and the way we got through the worst of the pain by repeating the Lord's Prayer together was an unexpected development and remains for me one of the most profound spiritual experiences I have ever shared with anyone. There is no need for me to tell you more, for you will develop your own rituals and they will enrich your connection and intimacy with your partner/caretaker.
Insist on a removable brace. We did, and though my orthopedist resisted at first, but we got what we wanted: a nice big black Don Joy boot which I've been able to take on and off at will since the surgery. Plaster casts are medieval devices, and limbs waste and die in them. Skin, completely deprived of light, falls off in sheets. They are heavy and burdensome. You have to take Benadryl to stave off the awful, un-scratchable bouts of itching that occur beneath the cast from sweating inside the awful thing, and skin peeling off. And, if you're like me, you may get a panic attack from being trapped in this rock-hard prison you can't get off and that will be another really bad experience that you and your caretaker just do not need. Insist on a Don Joy from the beginning. You will sleep in it at first, but as you feel your limb starting to recover you can start massage and other gentle therapies that will shorten your rehabilitation time by weeks and make you feel better, too.
Organize a support team. Your partner cannot do this on his own. As soon as you are able, reach out via phone calls or Facebook and emails if you can't bear talking on the phone, and get people rallied to help you. Some will be able to deliver food, either personally or, as MOE and SOE (Mother and Sister of Exile) did, send huge styrofoam crates of goodies from Omaha Steaks or other such food delivery services. This was a HUGE help to us. The life-giving pumpkin and raisin loaf that Denton and his wife Anke brought us the first week was my breakfast for a while. Some friends will volunteer to drive you to physical therapy and doctor's appointments: Those people are gold, especially if they will commit to days well in advance. Some people will make other offers, like my student (now friend) Graciela who wrote me an email saying “here's what I can do: vacuum floors, clean your kitchen, clean your bathroom. The only thing I insist, however, is that you not feel weird about it!” That last condition freed me, and for those of you trying to figure out what to do to help, stuff like that is the best. Someone who does a load of laundry. Someone who cleans the potty. Someone who just says, here's my cell number, call me if you want to talk. Someone who brings you a coloring book.
Note to the support team: please realize that recovering from a broken leg (hip, knee, ankle, etc.) is a long-term project. Everyone and his sister is going to rally in the first weeks after a bad accident, but most helpers drop off after a month or so, thinking somehow that the patient should be healed by now. I've actually had clients who, after 4 or 5 weeks were genuinely surprised that I wasn't ready to take a trip into New York City to take a meeting! The best support is the most faithful support: Keep caring and helping out until the patient is better.
This is my best advice for now. I've got to go, as the medical bills are starting to flow in from this little incident. Fortunately, Urban Exile is armed with FF's Cadillac Insurance Policy from the National Bank of Tiny Town. Even so, the bills are shocking and Exile is coiling for her upcoming conversations with Goliath Insurance Inc. More later.
Until then, tread carefully.
