Tuesday, February 07, 2017

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.


Gaye Roe said...

My thoughts and prayers are with you and Ann. I know being a caretaker full time can really take a toll, and you feel very alone. I would be glad to come out and stay with Ann while you get some out time, I can come after work, or on the weekend, and help with some chores as well. Let me know if I can go shopping for you or stay with her while you do... I know people say let me know if you need anything, but that is so open ended, I really am happy to give you break! I can make a meal also once a week or something, let me know when I can come and help. Love you!

Gaye Roe said...

Our thoughts and prayers are with you and Ann. I know being a full time caretaker is really hard and it takes a toll. I know you feel alone and isolated. I would be glad to come out and stay with Ann while you get some out time. I can come after work or on the weekend. I would be happy to make dinner, and bring it out and help with some chores. People always say let them know if you need anything, but that is really an open ended thing. Let me know when I can come and give you a break. It sounds like it I might be time to have someone come in and help with her care, this is always a hard decision to make when the time comes. Love you!