If someone had told me ten years ago that I would be doing what I'm doing today and carrying the responsibility that I am, I would have told them that they were out to lunch!!
My role as a caregiver began in November 1997. My husband Don had been sickly all of his life, having had polio as a child. He has endured several operations due to the polio. Surgery on his left shoulder involved unjointing it and inserting a pin, leaving him with only partial use of that arm. He later had a spinal fusion on his back, which only added to his disability. As a result of these two operations he could not work, so he received a disability pension. These operations took place long before I knew him. After we were married he had to have two more major operations on his back to remove scar tissue.
I met Don just a few months after the death of my first husband and the father of my child. Jim, my first husband, died on April 15 and it was in June that I met Don. I was invited to play cards with Don's sister, and even though I had been through school with her I never knew she had a brother. When I walked into her home that evening, my eyes fell on the most handsome man I had ever seen sitting at her table. It was love at first sight. After we had seen each other several times, he visited my trailer one evening, and my one-year-old daughter wobbled over to him, climbed up on his lap, looked into his eyes and said "daddy." She is now 27 and still calls him "daddy."
We were married on September 15 of that same year. He had proposed to me in the hospital, and although I knew I was in love with him I never realized he felt the same way. When he told me that night that he "had himself a woman and was going to get married," I never dreamed I was that woman. I was, and we have been happily married for 26 years in September. Last year we renewed our vows, and it was truly an awesome experience.
Don adopted Liz after we were married and he has been an absolutely awesome dad. He loves his little girl and she adores her father.
I want to share with you the experience of my role as caregiver to the man of my dreams. It has been a learning experience and although there are times I could string him up, it has drawn us closer together.
The fact that Don had been a smoker for the biggest part of his life resulted in him having major breathing problems. Add the polio to that and you're talking about many serious health problems.
In November 1997, he was in the woods helping a buddy and got his knee smashed when a tree fell on him. We had to have a hospital bed moved into our tiny living room, and he was pretty much bed ridden as he was unable to put any weight on that leg for 7 months.
This was a very difficult time for me, because on top of caring for Don, my sister (whom I had just met in November 1991) was dying of brain cancer. I was raised in a very abusive foster home, and to this day I do not have a high opinion of myself or what I can accomplish. Here I was between a rock and a hard place, knowing where my priorities laid and trying to deal with the guilt of not being there with my Mom and sister. A month after my sister was buried my Mom died and again I could not be there. My brother, who I had met for the first time when my sister had cancer surgery, came home again for Mom's funeral. I would have loved to have spent more time with him, but Don was not doing very well, so I had to go to the funeral and come right back home to care for him.
This was one of the hardest things I've ever had to experience. Although I was raised in a foster home, I knew who my real mother was, and also that I had a brother and a sister who knew nothing about me or our other sister. Yes, another sister, who was born three years after me and was also given up for adoption. We made contact when I was 25 years old. I had waited all these years to meet my family, and now to have lost my sister and Mom and not even have time to spend with my brother at a time like this made me very angry. To this day I'm not sure who the anger was directed to, but I felt it was unfair to see my dream come true and then end up in this way. But I realized that that's life and life's not always fair, and I believe if we are true to God, He will reward our gallant efforts. My place was with my husband, and that is where I was.
Now to bring things up to date. The past three years have been filled with numerous trips to the emergency room as well as stays in the hospital. Don has been on high doses of steroids due to his breathing problems along with all the other medications. Besides his COPD, just a year and half ago he was diagnosed with postpoliosyndrome. When he eats food, his esophagus does not let food go down. Instead it goes into spasms, resulting in food getting into his lungs or back up into his throat and causing him to aspirate. Due to this, all of his food has to be put through a blender and be the consistency of baby food. He does not like his food in this manner, and he has lost a lot of weight. He also has experienced trouble when trying to eat solid food.
One of these eating expeditions almost cost him his life. No one expected him to live, including our doctor. To make matters worse, I was in the hospital at the same time having an operation for an aneurysm which is caused from a condition I have called neurofribromitosis. NF1 is the abbreviation (and easier to spell). I also have a benign brain tumor, which is another member of the NF1 and NF2 families. This tumor is out on the acoustic nerve, which causes balance and hearing problems.
All of this took place in December 1999. I had my operation on December 8, and came home on December 15. I was told I would be off my feet for up to three months. Well, God had other plans for me, because when Don came home on December 24, I was up looking after him. I even cooked Christmas dinner. Praise the Lord.
Since then my health has been good. I have to undergo an MRI yearly to keep a check on the tumor, but the last one I had showed that everything looks fine, with no substantial growth. I know that God is keeping His hand on me for Don's sake. I can't look after him if I'm laid up. I made a promise to Don that I would keep him home and look after him as long as God gave me the strength to do so. Praise His name, for He's doing just that.
I have to admit there are days that I think I can't do this any longer or I don't want to do this any longer. But I know that I have to. I believe with all my heart that God has chosen me for this purpose. My role as a caregiver to my dear loving husband is God's perfect will for my life at this point in time.
To all who will read this, I'd like to say it is only through the strength and power of my God that I have been able to do this. We serve an awesome God and He is so faithful. If, when I meet Him on the other shore, I hear from His lips "welcome home, my child-well done," then it will have been worth it all.
I have found that in my experience of caregiving there are times I feel as if I'm on a roller coaster. I have days that I'm out on top of the circumstances around me, then there are days that I'm buried so deep underneath that I don't know which way is up. I also find that I get myself in trouble if I place too many expectations on other people. For instance, my church. I've even caught myself doing this to friends. I get myself so wrapped up in "me" and what is going on in my life that that's all I can see. When I allow this to be the dominant factor, I become very critical and judgmental. Then I really go to work on myself. Why aren't they calling? Why don't they come by for a visit? They know what I'm going through. They know how sick Don is and how long he's been sick. This is my church family. Where are they (and on and on it goes). The more I dwell on it and think about it the bigger it becomes and the madder I get. When I reach this point I have no patience at all and find myself getting snappy at Don, resenting the fact that I'm the only one doing this. So at this point I have quite a garden of bitterness growing.
Not a good scene. I then have to back track to what got me in this state to begin with. I rethink things and look at it from a different perspective. First of all, I have to ask God to forgive me and then I have to take a good look at myself and see that I'm no saint either. I don't visit. I don't always call, so who am I to whine and complain? I then grasp ahold of all the wonderful promises that God has given me and I stand on these. At this point one thing becomes very clear. If I fail people, then people are going to fail me. I fail God, but God never nor will ever fail me. After sorting this out, it's back to business with a clean slate.
I have found that caregiving is great for character building. I have learned so much.Yes, I'm Don's caregiver, but that does not give me the license to take away his right to say yes or no. I can't make him do something he does not want to do. I have to let go of that part of him and just do the best I can in the things that are within my control. I do believe I'm coping better with those times that he gets very short of breath. I'm not hitting panic city any more. I don't insist that I rush him off to the doctor or the emergency room. He's quite capable of telling me if he needs to be seen by someone. I'm learning not to blame myself and I'm trying to be kinder to myself and realize that I'm not God. I'm resting more and getting out more. Before I felt that I had to be here all the time, but he needs his space also. He told my daughter just last weekend that "your mother is awful overprotective." I heard this through the grapevine (my daughter!) I am that way and I'm working on ways to change. I let him know I'm here if he needs me but I'm not smothering him and crippling him. Goodness knows he's lost enough control and dignity. Who am I to rob him of what little he has left?
I was at a place in my role as a caregiver where I thought to myself "there has to be a site out there somewhere....a caregiver chat room." Others who are going through the same experiences as myself. So I set out to find such a place, and I might add that once I set out to do something, I don't give up without a fight, and I don't wait around for someone to do it for me.
You guessed it. I found the site at Empowering Caregivers, and what a beautiful spot. I have to share with you my response to my very first visit to the chat room It was in the middle of the afternoon and on a Saturday I think.Well, there was no one home. I thought "this is just great.A chat room and no one to chat with LOL" I laugh at myself now because I know the setup and understand it, but at that particular time it was not funny, and I was not a happy camper. Here I am today, having survived that little anthill. I love the site and all the wonderful people in it. Everyone is so kind, loving and supportive. You have guided me, taught me, shared with me your many experiences, and I've come to realize that there are many out there who are in worse circumstances than mine. I've made many wonderful friends and though we are separated by hundreds of miles, we are so very close together in heart. Each of us in our own homes sitting in front of our computers supporting and loving and being there for one another. Totally amazing. That is what it's all about, and we are in God's perfect will for our lives. He has called us to be caregivers to the ones we love. He commissioned us because He has great confidence in us.
Another source of healing for me is my poetry. God has given me the talent for writing, and as the storms blow against my ship of life and beat against me, I find great release in my writing. Sometimes I get writer's block and can't write at all, and there are times I can't write down the words as fast as the thoughts are entering my mind.
I've posted some of my poems on the message board. I guess I allowed myself to bury my talent and not use it, which was a big mistake. Since I'm back to writing I'm feeling better, even if no one sees what I've written. It's a vent for me; it gets the feelings out. Even if I'm the only one who reads what I've written, it's a form of healing for me. When others read my poems, it could very well be a healing tool for them also.
Another project of mine is building a website. Now we're talking about me, the one with no training whatsoever in computers. Do I let that stop me? Not a chance. So I'm in the process of building my website, and it is there that you can read my story, see pictures and read some of my poetry. The link is: Gloria's Site
I pray that with all of this going on in my life, I've helped someone somewhere. If so, you don't need to say "thank you" to me. Just offer up thanksgiving to our awesome God, for if it weren't for Him none of this would be happening. It's His faithfulness and unconditional love that has brought me to the place I am today. Praise His name. God bless all of you.