Caregivers

I have always been very independent, and it is much easier for me to give help to other people than to accept help for myself. The past six months have taught me than this attitude has really been a pride issue, and I am now getting a crash course in humility. Humility is not something I am acquiring overnight, and I still struggle everyday.

Since I was diagnosed with the brain tumor my life has been turned upside down. I can't drive anymore. I am not working at my job. I can't work in my garden. I can't do my own housework. I have to stop worrying about the dirty windows. Some days I can do the laundry; other days I can't. I can't carry things upstairs. I can't walk 10,000 steps a day. Many people don't treat me like an adult anymore. These are huge changes to process in such a short amount of time.

I have had to concede that I need caregivers to help me get through this time in my life. In some ways I think it is harder for my caregivers to cope with the cancer than it is for me. The caregivers have to cope with feeling guilty about doing what they have to do to maintain their normal lives and meet other necessary obligations and still have time to worry about me.

For example, my husband still has to keep his job while at the same time has taken on a lot of the household duties and drives me to the endless doctors' appointments I have each week. He is often late for work. He took a week off to go to Tulsa with me when he had a ton of work to finish. I know he worries about meeting deadlines for his job, but doesn't want me to know he is worried. I pray for him daily that he doesn't crack up (or run away from me when he has to put up with my mood swings). He is so strong and makes me feel safe no matter what happens.

My daughter Becca doesn't treat me with kid gloves - and this is important in a caregiver too.

My sister Judith gave up her spring break to hang out with me, and I ended up yelling at her because I still had to prove to her how capable I was of taking care of myself. Luckily, she forgave me and is coming from Florida to stay with me in Tulsa while I have radiation treatments.

My brother David gave me the push I needed to get a second opinion from Cancer Treatment Center of America.

My niece Jordan and nephew Adam came from Florida and helped me through my wheelchair days in the hospital. Their professional expertise, youthful humor, and honesty were exactly what I needed.

My brother-in-law Ian can relate to my disabilities and distrust of the medical community.

From the first minute I knew I had a brain tumor Angela and Velma have been more like daughters to me than friends. At Christmas they came and decorated my hospital room. Their love and kindness has touched me more than they know.

Maria prays for me "without ceasing." In fact the first thing I saw when I got out of surgery was a sticky note on my pillow that said: "Maria called."

My supervisors and friends at CTEC have been fantastic. They all know me from "before," and it is essential for me to know that they still believe in me.

My friends and therapists at TRS have become a second family to me. Not only did they help me physically to get better, they helped me maintain my dignity. They were a built in support group. I miss them very much, and look forward to visiting soon.

My family and friends continue to call and e-mail me their encouragement and love- even after six months.

I found these Caregiving Tips: Advice from Patients in CURE magazine that I thought were great:

1. I will take as much attention as you'll give me. Don't always fall for it.
2. It's OK to still get mad at me for not doing the dishes or forgetting to pay the mortgage.
3. Sometimes your positive energy has to be enough for both of us.
4. Respect my self-esteem. It's hard to accept the fact that I need to be cared for.
5. I don't want to feel fragile and helpless, so respect my need for independence. Let me do as much for myself as possible.
6. Touch me. Cancer isn't contagious.
7. If you think I am overexerting myself, check with my doctor before trying to keep me from living as normally as possible.
8. Forgive me if, in my fear of the unknown, I am difficult or unkind.
9. Remember to laugh and cry with me.
10. Be honest with me.

I came to the end of what I can do in my own strength a long time ago. God's grace is the only thing that keeps me from bitterness and despair. Knowing that God has a plan for my life is what gives me continued hope. I have to stop thinking about "what if..." and trust in God's love and protection. I am so blessed that the Lord has put my family and so many good friends in my life to help me through the cancer.

Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up.
But pity the man who falls and has no one to help him up!
Also, if two lie down together, they will keep warm. But how can one keep warm alone?
Though one may be overpowered, two can defend themselves.
A cord of three strands is not quickly broken. (Ecclesiastes 9-12)