Friday, November 21, 2008

The Job I Never Applied For

If you are a family caregiver, it’s probably not a job you applied for. Many of us find ourselves thrust into this job after a diagnosis or an accident. Maybe we were first choice and maybe we were the last resort. Nevertheless, here we are.

Were we prepared? Probably not. Do we feel qualified? Most of us don’t.

I’ve been a full time spousal caregiver since March 2003. And, honestly, it was a job I never dreamed I’d have at age 38. I really thought I’d being doing something else with my life. Seeing my kids into their teenage years. Completing our homeschooling of the older children and participating in school activities. Taking family vacations. Enjoying hobbies...but caring for my spouse full time? No way.

As I found my role as caregiver increasing and other roles shrinking (because of lack of time and energy), I admit it, I panicked. I didn’t know what I was doing. I was lifting, transferring, doing stretching exercises with my husband, bathing, and a lot of cleaning up after accidents….of all sorts. And, I had no clue if I was “doing it right”. I was burning out. I was tired and every day I battled feeling inadequate. I didn’t always like my job. I got frustrated. I worried, I cried. I fell apart in front of friends. I shared my heart with some and then regretted that I couldn’t just “get it together and handle things myself”.

As I entered my fourth year, I realized that something had to give. Sure, my kids were a great help. They picked up the slack in areas like laundry, housework, trips to the grocery store, etc. But overseeing everything was my job. Being in charge of the house and taking care of my husband was my job. My role was changing. The job I once had, wife and mother, seemed simple. This new one? Overwhelming.

Finally, one day, after many tears and weeks of self doubt, I did it. I cried out for help. I talked with my husband and told him I didn’t think I would make it to the end if I didn’t do something. I had some ideas, but honestly, in my world…..there weren’t a lot of options.

You see, I thought that if something came into my life, I should be able to handle it. The Lord never gives more than you can bear. Scripture tells us in I Corinthians 10:13, “There hath no temptation (trial or proving) taken you but such as is common to man: but God is faithful (trustworthy and can be relied on), who will not suffer (allow) you to be tempted (tested and tried) above that ye are able; but will with the temptation (trial) also make a way to escape, that ye may be able to bear (to bear patiently and endure) it.” As we have trials, our strength increases. And yet, I wasn’t feeling it. And I wasn’t coping well. I was a failure, not only as a caregiver, but as a Christian woman.

I felt like I had lost my compass. I still read the scriptures…periodically. I prayed, often…almost continually, crying out to the Lord for help and even relief from my burden. But, instead, I felt just more and more pressure heaped upon me. So, I sought help.

First, I met with a counselor. I found a woman who understood and agreed with my Biblical World View. I sat down and explained all I had been through, a recent miscarriage, changes in my role as wife and the burden of caring for my chronically ill husband, as well as other extended family issues that were burdening me down. As she listened, I could tell she understood.

As I opened my heart and shared where I was, and the things I was dealing with, I told her that I could no longer see truth. You see, being under the burden of my responsibilities, I could no longer see what truth was and what was a lie. I had expectations of myself, and I was falling short. I was mad at myself for not handling things right. I was struggling with what Ideal Me would do in this situation and what Real Me was actually doing.

You know, Ideal Me was patient. Real Me got frustrated easily. Ideal Me could handle anything thrown at me, Real Me had limited resources of time, money and energy. Ideal Me walked in peace, Real Me couldn’t find a moment’s peace. The counselor was able to help me work through some things in my life and helped put my life back into proper perspective. She helped me to see that I could not do this alone. She showed me that Ideal Me was just an ideal and that I could never reach the expectations I set upon my own life. Real Me is the person that my family and friends knew and even loved.

Secondly, the day came when I had to talk with my husband. I shared my heart and told him that I needed help. We worked through it and I called our family Dr. We set up an appointment to have a Home Health Care company come out and give me some instruction in caring for a chronically ill/disabled person. We were given a hospital bed, a lift, a new beside commode, and some other helps. I was amazed at how just a few changes made such an enormous difference. Contrary to popular belief, Medicare does not cover long term care of chronic illness. This was to be a time of training and help would be very short term.

As my husband and I discussed his care, I realized that there were some jobs I just couldn’t stand doing. I also found that some of my methods were time consuming and energy zappers. No wonder I was so exhausted. I was wearing myself out needlessly. There were easier, better ways to do the things that had to be done. And watching the “professionals” work made me realize that I did need help. We decided that there were a few jobs that I could delegate and even pay someone else to do.

The Lord doesn’t give us more than we can bear, but why do we think that means we must bear those burdens alone? Galatians 6:2 tells us to “Bear ye one another's burdens, and so fulfil the law of Christ.” We are to help those around us who find their burdens too large to carry on their own. I believed those scriptures, but I always thought my responsibility would be to help bear a burden of a fellow Christian. Instead, at this time in my life, I found myself on the receiving end. I was the one who needed help in bearing my burden. I just had to ask for the help I needed.

So, maybe we weren’t prepared for this job. Maybe we’re in over our heads. Maybe the job is too big. But, we have options. We just have to be creative and look outside of ourselves to find it.

If I were to talk with a caregiver face to face, this is what I would say. It’s a tough job that few of us applied for. We don’t have the all the skills, experience, and training needed to do our jobs. So what are we going to do? Crater? Cry? Give up? If we do, who will care for our loved ones? I did that for several years. Let me tell you right now, it doesn’t accomplish anything….you’ll still find yourself right where you are. Instead, don’t be afraid to ask for the help you need.

I guess I see it this way. Laundry is a big task. But, imagine how much bigger a task it would be if you had to do it alone, without a washing machine and dryer, without an iron. The task would be almost unbearable. But, we have help. We have washing machines that pour water over our clothes, agitate, wash, rinse and remove excess water. We have dryers that tumble our clothes while heating them causing the water to evaporate. And when those tasks are done, we can iron our clothes, getting them nice and smooth, ready to be used. Are you cheating by having these items to make your life easier? Are you less of a woman or housekeeper? Or are you working smarter? Are you saving yourself time and energy so that you can focus on the important things in life?

Let’s get the help we need to do the job we never applied for. Sure, the task is difficult, sometimes overwhelming, but with the help of equipment, aides, friends and family, we can get the job done, and still have some energy left to love the one we care for. What can be more important? And maybe, just maybe, we’ll find a little time for ourselves in the process.


Erin said...

I love the layout!!! And you're a really good writer Mama!! I enjoyed reading this. It helps to read it and totally understand where you're coming from. *sigh* Hang in there, I think you're AMAZING!!!!!!! ::HUG::

Stewpot said...

I never realized what my Dad must have experienced caring for my step mom with her stomach cancer or then Jeri with her pulmonary fibrosis. Your thoughts let me see what Daddy must have thought at times and helps me better understand why he so appreciated anybody coming by to visit and give him a chance to scoot out the door a few minutes.

I think the Lord will use this blog to encourage others, who directly care for someone else or are indirectly involved.

Keeping you all in our prayers.

W. Latane Barton said...

Paula, Thank you for starting this caregiver blog. It will mean so much to so many, and I am counting myself in the MANY. Your post spoke to my heart. I've been there and am still there.

God will bless you for your efforts in helping others.

in Christian love

Megan said...

Mrs. Wy you are such an encouragement to me! Granny's care was very exhausting and I would never have realized it except we had been there. I know that spouse care is even more emotionally exhausting than a grandparent but I do have just a tiny taste. We love you guys and think and pray for you a lot!!

Darlene B said...

Paula: I am a reader of your quilt blog and was drawn to your biography clearly stating that you are a Christian woman. I am, too! Today I saw the link to this blog, and I couldn't believe it. My husband also has MS, although his is non-progressive. We are blessed that he has not had a relapse since his diagnosis in 1985. However, one of my Christian co-worker's husband was diagnosed with MS last year - and he is progressing rapidly. I am going to share this blog with her so she can be encouraged. Thank you for your honest words and emotions of what caregivers go through. My best to you and your family.
Darlene TN said...

Paula, I found this blog through W. Latane. I have been the caregiver for my husband since 1992(16 years) I have forgotten the real me. I will mention a few things about my husband (His name is Bill) He has had six heart attacks, two different triple heart by-pass surgeries, (1992 and 1997) a ruptured aorta.. he was in surgery when it ruptured or he wouldn't be here today, he is a diabetic, he has thyroid trouble, and is about 100 lbs. overweight. And I have diagnosed him with PAPD...Passive Agressive Personality Disorder...but that is another story of its own. I have had home health at three different time during these years, but that doesn't last forever. At the moment we had a lady to come give him a bath once a week. That's all the help I have. Someone told Bill that God had left him here for a reason, and his answer was...he is left on this earth to aggravate me to death. That totally describes his attitude. About a month ago, I started writing down everytime he called my name during the day and night. Every five minutes 24/7. Sometime I will let you read the list. (or the book) I didn't mean for this to get so long, but you so reminded me of myself. If it wasn't for my Christian faith, I would have been totally insane long ago. He isn't a Christian. I don't say much about him on my blog. I would rather write about happy things. I plan on reading your blog in its entirety. I have read only the first post in November. When you see TN you will know it's me! God Bless you today and every day. Oh, I'm 71 and Bill is 72. We have been married for 52 years.