Since we've been together J's health has taken a serious downtown for the worse. He's been given new diagnosis. Is it easy being the spouse of a seriously ill person? No (ugh, I don't want to sound like a martyr, but I also want to be real). Is it easier than being seriously ill? Yes.
I'm not going to pretend I always handle J's illnesses and the impact they have on our life with perfect grace. I wish I did. But I get impatient when he's in the bathroom for long periods or when we can't do something we've planned or just when he can't help me with something around the house. I married him because he's my favorite person, the person I most enjoy doing things with. It is hard when we can't do the things we enjoy because of his health issues.
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| Gratuitous shot of Emily. Actually, we couldn't make it through the rough times without her. |
It's also kind of isolating. None of my friends' deal with this level of illness in themselves or their spouses, but then I met someone whose husband has a couple of the same illnesses as J and it helped me to have a friend who gets the awfulness of watching your husband suffer/the suckiness of not getting to be a normal 30something couple.
So, here are my top five tips for dealing with a seriously ill spouse. These tips also apply, more or less, to other family members with chronic illnesses.
1. Read About Spoons.
Christine Miserandino's Spoon Theory is an absolute must-read if you have anyone in your life dealing with chronic illness. Christine talks about how she only gets so many "spoons," which represent energy, each day and how she has to carefully budget them to get through the day. Reading this helped me understand why J wears out and how to help him conserve and budget his spoons. I can get up, walk the pets, write a blog post, work, run to the grocery, run a load of laundry, watch a movie, work on a project all in one day. J can't. He has to pick and choose very carefully.
2. Learn About the Diagnosis.
Reading about J's illnesses also helped me understand what he goes through and how I can help. It helps me differentiate between the symptoms of entering a flare and a possible reaction to medicine, and assess when he needs to get to the doctor/hospital. I think it also helps him feel less isolated, because we're on the same page as far as information and being able to discuss his illnesses. It also plays an important part in advocating for him.
Understanding his illnesses allows me to plan around them. If we are going someplace new I try to locate, in advance, rest stops and other places with restroom facilities. I bring a book so that if he's in the restroom for extended periods of time I'm entertained. I try to schedule appointments for his good times of the day. Et cetera.
3. Get Organized.
I made this free printable health form summarizing J's medical records. On it I've listed his allergies, all the info about his prescriptions, doctors, surgeries, diagnosis, and notes, complete with phone numbers. Copies of it are folded up inside both of our wallets and saved to my email. During hectic ER visits or hospital admissions it's a lot easier to just pull out a piece of paper than try to remember every prescription/procedure/diagnosis.
Prescription management is important, and something that took me a bit to get organized. On iCalendar I mark the day I pick up a refill and set a reminder for two days before he'll need it again. I also save the Rx numbers of his prescription under the pharmacy's contact info on my phone so I'm not scrambling when I call the refills in.
4. Be an Advocate, But Know When to Back Off.
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| Photo From The Sauna Times |
J's a grown-up. Does he need my support about his health issues? Yes. Does he need me to micro-manage his illnesses? No. So I try to balance being an effective advocate with not being overbearing. If one of his doctors wants to try a new treatment or prescription we discuss it. I share my viewpoint. Then I let him decide, and I back him up. Sometimes I feel like a course adjustment is necessary, and we'll discuss that. It's still his body, though, and therefore his call.
However, when he's in the hospital, I'm there to make sure he gets the best care possible. And I think its super important to be there as much as possible. A couple of years ago J was almost given a drug he's deathly allergic to, although the hospital had put a red allergy bracelet on him listing the drug and I'd told the nurses and the doctor. They were placing the syringe into his IV line when I walked into room and started screaming for them to stop.
Being an effective advocate doesn't mean being a pain. I'm always nice and polite. It just means standing up for J's needs. If he's in pain and we've been brushed off for an hour or so, that's not acceptable. One of J's illnesses is pretty rare. One ER doctor told us it wasn't the right diagnosis because he (the doctor) had never heard of it??!?!?! I mean, once you read about the disease J has every single outward physical symptom.
Another issue I'm always on the look out for is meds that are counter-indicated for his prescriptions. This is one that pops up a LOT. So on the notes section of my printable I've listed the drugs that doctors always want to give J which are not a good mix with is everyday meds.
5. Make Your Own Version of Normalcy
There's a lot of things we can't do. Going to the movies is pretty much out of the question. Large scale DIY projects that require both us are a no go. And at one point I was really focused on all the things we couldn't do. This wasn't good for our marriage or my sanity. Now I put my focus on the things we can do together.
We also make sure that J's health isn't the only thing we discuss. We do what he can when he can and we enjoy it. This week we rented The Dark Knight Rises and had a date night at home where I turned off my phone and the computer and we enjoyed our movie.
J has illnesses, but J is not his illnesses. All the stuff we did before we try enjoy modified versions of now. We have our rituals and routines and we try to stick to them as much as possible.
J has illnesses, but J is not his illnesses. All the stuff we did before we try enjoy modified versions of now. We have our rituals and routines and we try to stick to them as much as possible.
On a related note, I make sure I'm living my life, especially when we are in the middle of a flare. When J's down for the count for a week or more at a time its easy for me to sink into depression. Instead, I make sure to take time out to do Tracie stuff and get out of the house. This blog's really good for me, because it helps me shape my downtime, both in terms of blogging time and working on projects.
Does anyone else have any times for dealing with health issues?
My husband had a stroke 3 years ago. Not only did this affect him physically, but also mentally. He is not the same man I married almost 35 years ago, but I love him just the same. It's difficult, but no one else can take care of him the way that I do.
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