Circling the wagons: learning to prioritize as a caregiver

I've been a caregiver for several years now for my wife Ann. Just recently though, over the past few weeks, she has been basically bedridden. She has a desk chair which she keeps next to her recliner, so whenever she needs to use the bathroom, she stands up, turns around, and sits on the chair. Then she scoots it down the hall to the bathroom, where she stands up, walks two or three feet to the toilet and sits down. Then the whole process is repeated in reverse. Part of her challenge is a loss of stability on her feet. She is scared to do more because of it.
All of this has required me to do a lot of extra work. Before, she'd be folding laundry, doing some dishes, getting a lot of her own lunches and breakfasts, getting her own water when needed. Now, prior to leaving for work, I need to make sure she has extra underwear in the bathroom, bath towels stacked on the couch next to where she sits in her recliner, lunch in a small cooler, her water glass filled, and breakfast. Often when she used the bathoom, she needs my help, and when she gets brave enough to take showers (lately it has been once a week), she depends on me to help hold her up in the tub.
The time demand on me is huge. When in the past I was able to get out of the house for several hours every couple of weeks for much needed breaks, now I find myself chained to the house when I'm not at my job. I'm not complaining, just stating facts.
I've found that there are ways to deal with the extra load. I call it "circling the wagons" after the wagon train companies in the pioneer days who, when under attack, put their wagons in a circle and fought off their attackers from a less vulnerable position. To me, circling the wagons means reducing the things that need to be done to what needs to be done for survival.
The first thing on my list is my own health. If I go down, who is going to care for Ann? However, there were a few weeks there when even going to the gym was nearly impossible and it was beginning to take its toll on my health. Thankfully, for the past two weeks, I've been able to get to the gym three times each week, which is my bare minimum. During the time that I was relegated to one time per week to the gym, I did what I could to "circle the wagons" even further and I recognized that even if I couldn't make it to the gym, that didn't mean I had to stop eating healthy foods. I made it a point to keep eating my smoothies, or something else almost as healthy, such as oatmeal with blueberries, bananas, and Greek yogurt added each day. I have tried to avoid resorting to quick fixes like donuts or candy.
My own mental health is also a concern. Everyone who has been or is a caregiver, needs the occasional out. Skiing, hiking, a drive up the canyon, a picnic--anything to get away from a little of the stress. I've already had to cancel one ski trip for which I had already paid. During this extra stressful period, even going to church has been a luxury and I hadn't been able to go for weeks until last Sunday. It was such a relief to be able to go. I would like to be able to get to my discipleship group and associate with my friends there. In the old days, when the wagon trains were under attack, it became pretty stressful. They had to fight hard to survive and there was little reprieve until the attackers were defeated enough that they went away. Sometimes they came back, and sometimes they didn't. Honestly, I don't know what they did about the stress and the adrenaline rush they were having at the time. Probably just fought until it was over.
One thing I remember about the circled wagons was that it was always such a relief when the cavalry showed up. I'm still waiting for my personal cavalry.
Other ways I've found to circle the wagons have been to not fold the clothes. I hang the ones that need hanging, and fold the ones that need folding, but the ones that can go without folding, just go into the drawers unfolded, or stay in the baskets until needed. The floors are getting swept less often and the sinks, tub, and toilets are getting scrubbed less frequently. I am trying to make dinners that have leftovers.
And slowly, Ann is venturing with a few extra tentative steps. I caught her walking down the hall the other night, instead of rolling. Slow, and using a cane, she staggered along and made it back to the chair. I encourage her to do this, but sometimes it's just hard for her to take my advice.
Her rheumatologist has said that he doesn't want to provide any in-home physical therapy until after he sees her next (although he thinks it's a good idea), yet she's afraid to have to walk too far, like getting into a car, or a wheel chair, in order to make it in to see him. Her appointment is on the 23rd.
She has decided that she's not going to get the weight-reduction surgery. I personally think she's making a mistake in not seriously contemplating it, considering the amount of extra stress her weight is putting on her joints and lungs. But that's part of the battle too.

Snowshoeing and life

There are times when I feel guilty just for being healthy. This morning, I left my wife, Ann, to go snowshoeing. For the past few days she's been having a terrible time with her RA flareups and extremely dry eyes, both at the same time. “I can deal with one,” she said, “but not both at the same time.”

I offered to stay home with her. “No,” she said. “There's no reason you should stay home and be miserable, just because I am.”

The thing is, she's right—and she's wrong. While there's really nothing I can do to help her—for me, I hate feeling helpless to help--there's something to be said for staying home for the sake of sympathy.

I was gone for five hours. I traveled through some beautiful scenic countryside, up the road to Guardsman's Pass in Big Cottonwood Canyon. I got a lot of good exercise and breathed in a lot of clean air. My blood was pumping and my sweat glands were working proficiently. My legs began to burn as I pushed on toward the pass, but I finally made it. I stood there taking in the view for a few minutes, talked to a couple of snowmobilers who had made their way up to join me, then headed back down.

The rest of the afternoon I've been there for Ann. I'm still trying to figure out how to help the eye situation—I did call her eye doctor and arranged an appointment for next week—and I massaged the area in her neck that's been giving her fits through this flareup. She needed help with her shower and lotion put on afterward. I was happy to do it. Sometimes the strong can only do so much to help the weak and suffering, and the rest must be left up to God and time.

It can be a frustrating experience being unable to help someone you love through their trials. There's something I need to learn from this, and maybe it's just that I can't make everything all better. And maybe it's that even though I can't make things better, I can be a support and a help through the trials. When it comes right down to it, the help we give or don't give in the times of need is what makes us good people or indifferent people. I hope I'm never indifferent to the suffering of my loved ones. That would be a tragedy indeed.

Thoughts on vacationing

Now, here's my first post vacation blog entry. I think that overall the vacation did both of us a lot of good and we did some fun things, ate too much rich food, and had a lot of time to talk to each other, which is always a plus. We were actually sad to come back to real life, and I'm having a hard time getting back into working...laziness breeds laziness.

On the other hand, I'd have much rather spent a lot more time hiking on my trip than driving. Driving is hard on Ann, but hiking is much harder. Because of the severity of her rheumatoid arthritis, she can't really hike at all, but she still enjoys seeing the beauty of nature. Long rides though are not good for her either. It's really best if we can get to a place where she can stay put, go out for short drives, have something to do when she sends me out to do my thing, and be comfortable. Cheap motels are generally not possible anymore, because the chairs just don't work. When we went to Kingman, Arizona last year, we ended up having to switch hotels after the first night because the one we had scheduled just didn't cut it for her comfort. Thank goodness that the original motel was willing to give us a refund. Ofcourse, I promised to give them a good review on Trip Advisor. On that trip we moved to a Best Western and it was plush, more expensive, but worth it to make sure she was okay.

We have another vacation scheduled down in southern Colorado in August and I'm hoping that their furniture is good enough that she can be comfortable. This usually requires an arm chair that has a high back, or a recliner that is higher off the ground than some of them are, so that she can get out of it if her knees are flaring up. I will check into this as far as possible before we go so that we can take measures to ensure she has something comfortable to sit in.

That's what we really have to look for in vacation planning now. If she's going to be miserable, it just isn't worth going, for her, or for me.

Arthritis: The distinction between rheumatoid arthritis and osteoarthritis

It happens frequently. My wife will wince or say "ouch" and someone will say..."what's wrong?"
"I have RA," she responds.
"RA? What's that?"
"Rheumatoid Arthritis."
"Oh," comes the response, "I have arthritis." This is typical, yet expresses the ignorance of people in regards to one of the most insidious and debilitating diseases. Though I'm no physician,  I will try and explain why except in extreme cases of osteoarthritis, its effects pale in comparison with RA.
Rheumatoid arthritis is an auto-immune disease, that is, it's an overly-energetic immune response of the body, which actually begins attacking itself. It's about one tenth as common as osteoarthritis and can affect young people as well as older people. Every single joint in the body can and usually is affected at one time or another. Some days it might be the knees are worst, some days the elbows. Sometimes the small joints in the jaw or where the ribs connect to the spine or sternum are inflamed. It is a progressive disease which can affect not only the body's joints, but other organs of the body, including the lungs.
Osteoarthritis is the "wear and tear" type of arthritis and generally occurs in those over 60. This type of arthritis has nothing to do with the immune system, it is caused by overuse of a joint, and usually begins in one joint. For example, when I had my knee surgery back in the 1980s, the doc told me I had the arthritis of a 70 year old man in that knee. I was in my twenties at the time. Thankfully, that arthritis hasn't really been much of a problem since the surgery. To be fair, this type of arthritis can end up being severely debilitating in some people. From the website Rheumatoid Arthritis Diagnosis: "Rheumatoid arthritis is a more severe disorder due to systemic involvement, which may produce complications such as, pericarditis… pleuritis… vasculitis, etc., causing a shorter life expectancy if not diagnosed and treated properly."
About 1 in 10 have osteoarthritis, while RA affects 1 in 100.

Here is a video that explains some of the differences between the two types of arthritis: The difference between osteoarthritis and rheumatoid arthritis (RA)