Care for the caregivers

In writing on this subject, I run the risk of sounding like I'm complaining. And yet, I feel the need to open the eyes of people to situations they may have under their very noses, within their own family circle or conclave of friends.
Among the vast throngs of people existing on this planet, there is a group of people, scattered across the globe, who are called “caregivers” or “care partners”. I heard the latter terminology used by Jennifer Brush and Kerry Mills, authors of a book called I Care:  A Handbook for Care Partners of People with Dementia. That being said, caregivers or care partners, whichever terminology you prefer, involve a wide range of people caring for others with a wide range of challenges.The challenges may be mental disorders, such as Alzheimers or other forms of dementia, or those for whom care is given may have physical challenges for which the causes are myriad. In my case, I am caring for my wife Ann, who seven years ago, was diagnosed with Rheumatoid Arthritis, Sjogrens Disease, and Fibromyalgia. Those of us who are caregivers do not think of ourselves as angels or saints, or anything of the kind. Personally, I am an ogre on a frequent basis. Most of us are just people thrust into a situation they never wanted to deal with, but who are doing the best they can. In most cases we are barely hanging in there.
For the past few months of this year—since January actually—Ann has been in some extreme difficulty, which has required much more of my time. Before that, she was able to get out of the house on her own, make her own meals, and pretty much take care of herself. Since January, she is debilitated to the point where she cannot shower without help, often requires assistance when using the bathroom, cannot stand long enough to get her own meals, and cannot drive herself anywhere. As you can imagine, this has put a huge burden on me to help her with those things.
Since I am not old enough to be retired, I work a forty-plus (usually in the non-Christmas time of year it's around 45) hour week at the U.S. Postal Service as a letter carrier. Our daughter Rebecca, and her husband Justin, along with their four children live in our home. Justin works outside the home, and has a heavy schedule both at work, and doing things for his LDS church calling. There is a level of dysfunctionality within their family and while I'm at work, Ann receives sporadic care. I make sure she is fed breakfast before I leave, and I put her lunch in a small cooler. When I come home, I get dinner ready—or pick it up somewhere—it has become harder and harder for me to have the desire or energy to actually make dinner—and then spend the remainder of most nights at home with her. She has been home watching something on television all day, or sometimes reading, and is bored. I then become the entertainment by playing board games several nights a week, or watching something with her.
While I love spending time with Ann, there are certain chores that need to be done, such as lawn mowing, weeding, and even stuff inside the house like washing walls, scrubbing floors, and cleaning bathrooms. Going to the store for needed groceries becomes a challenge because there is a certain amount of guilt placed on me when I hear Ann's words, “you're leaving me again?” Even going to lunch with a friend or attending church meetings are filled with guilt trips for desertion. All of these chores and activities get postponed or not done at all because of Ann's need for companionship. Busywork, such as contacting my medical insurance for forms, or getting reimbursed by my Flexible Spending Account get pushed aside so that I can meet Ann's immediate needs. I believe these things are common among caregivers and that I am not alone.
I have the added challenge of the other family members who live in my house not totally functioning, and I end up having to clean more (and other great challenges) because of that than I would were they to move out. However, Ann is insistent that they remain with us until she can care for herself, despite their limited contribution. If they were fully functioning, they would be a great help, instead of an extra burden, which I would welcome, wholeheartedly.
One of my personal challenges and one that is common to caregivers, is caregiver burnout. It takes a lot out of a person to care for another constantly. Breaks are needed. Those of us who appear to be “handling” it well, are often not doing as well as we should, or even could be. I am strong. Very strong. I make it a point to not whine and I try to put a positive spin on things. I blog excitedly about my adventures, and I use my sense of humor frequently. To outsiders, or even sometimes close friends and family members, this can look like I'm doing okay, so no need to help. The stark reality is though, that us caregivers desperately need those close to us to step in, often without being asked, and lend a hand.
When Ann first came home from the hospital in January, some of the people from the church I attend offered to help. At that time, I turned it down, largely because I was embarassed that we even needed it considering we had family living with us who were able-bodied and should be shouldering the load. Nobody from outside really knows how dysfunctional our household is, and it's actually not easy to explain to people. I am reminded of these words from the book of James: “If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what good is that?” (James 2:15-16)
In the past, I have used hiking and other activities to get myself a break from the caregiving. This year, because Ann took a turn for the worse, I have been able to get out far less than in the past. I have been afraid to schedule anything with anyone because of the times when I've had to call and cancel because Ann's needs were acute at the time the activity was supposed to take place. I think these kinds of things are common to other caregivers as well. Yet we caregivers need to take care of ourselves if we are to continue taking care of our loved ones. One thing I've been able to do on a fairly consistent basis is get to the gym. I go on my way home from work. I think stopping home first would keep me from going back out. What I could really use is a few days away from things, just to rejuvenate. I just don't see that happening. What would really be a blessing would be for Ann to get well enough that she could do many things for herself again. I think that will happen some day, but it's a slow process.
Another thing that caregivers are often challenged with is companionship. In many cases it becomes one-sided. One can give, and one cannot. It isn't the fault of the one being cared for, but it is a reality for many and hard to deal with. I have no idea what the solution is, but just being mindful of that challenge is a big help.
So my plea is for those who love the caregivers and those they care for to be aware of what's happening, not just visibly, but behind the scenes as well. And take some time from your busy lives to pitch in for a day or two a month. You will be blessing the lives of others, and the Lord will bless you for it.
One thing I think I have going for me that perhaps many other caregivers don't is that I always believe that there is a light at the end of the tunnel—even if I can't currently see it, I know it's there. And I know that God is helping me endure and survive, and eventually wear the victor's crown.

Now, I hope that looked more like explaining than complaining. All you folks have an amazing day!

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.