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!