When Gail asked me to write for the Empowering Caregivers Spotlight, my first thought was "why me?" Most of the caregivers with whom I've talked care for elderly parents or spouses, and I take care of our 28-year-old daughter. But then I remembered that "caregiving is caregiving" no matter to whom or how old. We all have something to contribute.
My husband Jerry and I were married on November 22, 1969. I met Jerry at church - the "new girl" in the choir. When we married I knew he had diabetes, and although I watched as he gave himself insulin shots, I never knew much about the disease. Other than that, he was in perfect health.
We were blessed with a daughter (Kaylie) in 1971 and a son (Stephen) in 1978. Kaylie began showing signs of diabetes at the age of four and was immediately put on insulin, which I had to administer to her myself. Giving shots to a four-year-old is not my idea of fun.
But my real "caregiving" experience began in the spring of 1982. Kaylie, who by then was 10, had been sick off and on for about 3-4 months. Each trip to the hospital involved admission and IV hookups. We were home the next night (usually) but realized we didn't test blood sugars as often as we should.
On April 22, 1982, our lives began a change that continues to this day. Once again Kaylie began throwing up and becoming dehydrated. Jerry took her again to the hospital. He remained with her until she began asking for food and TV. I remained behind with our four-year-old son. I always stayed home, as this was my way of coping.
On the 23rd, we got a call from the hospital that no parent wants to hear. They couldn't wake Kaylie up and suspected Reyes Syndrome. If that was the case, she would need a complete blood transfusion. We called a neighbor to stay with Stephen, and we were off to the hospital.
We had to go to the Emergency entrance because all of the other doors were locked. I remember the so-quite halls. The darkness and knowing glances from other parents, wondering what was wrong. And the ever-present worry from us. What if she was really sick? How would we handle this? She was only ten. WHY???
Once we got to ICU, she was in a room with only four beds. One was occupied with a boy who had been in the hospital since the day he was born. Our daughter was in the other. She looked peaceful - only a few wires hooked up. "She's just sleeping" was what we wanted to hear, but what we heard instead was "She's in a coma."
The doctors had ruled out Reyes Syndrome, but they didn't know why she was in a coma. I met and listened to more doctors that night than I had in my entire life. Here I was, a stay-at-home mom, but that night I heard about brain stem, brain swelling, etc. What was happening? I faced weeks or months of caring for my ten-year-old daughter.
As weeks wore on it was determined she had brain swelling due to a chemical imbalance. Needles were inserted into her head and heart to monitor the pressure.
At the end of May it was also decided to put in a trach as many attempted times to remove the plastic breathing tube failed. Her vocal cords were paralyzed shut due to the brain swelling and air was not able to get to her lungs through her nose or mouth.
Jerry spent every night after work at the hospital reading, sponging, and talking about anything that might spark a memory or wake our daughter up. I spent time at home caring for our son and basically being in denial. I also prayed that the phone wouldn't ring with more bad news. The weekends were mine and I would do the reading, sponging and crying.
When she was able to ride in a wheelchair we would take her and all equipment to the playroom to give her something different to see and hear but in the end we had to leave and put her in the care of doctors and nurses.
After a few months she was stable and was transferred to a rehabilitation hospital. A feeding tube was inserted into her nose down into her stomach while being fed a specialized formula (on the order of today's Ensure). The personnel at the rehab tried desperately to get a reaction to something.
Again, Jerry spent week nights with her and on weekends we all would visit, even our son with his new tricycle. But again I kept my distance, always relinquishing her to the care of someone else.
She was on a 24-hour "Kangaroo pump" for feeding. The first night we brought her home for a visit was a sleepless night. Since we didn't have access to a mist machine to help keep her trach moist, we thought a humidifier might work. It worked all right! In the middle of the night I heard a noise and upon investigation found out Kaylie's ceiling was dripping from the moisture in the room. The humidifier worked just fine!
Kaylie was still not able to communicate in any way-no talking-nothing. Just flesh, bones and machines.
While she was at rehab, we found another one closer to home that specialized in children. Upon inquiring we were told there didn't seem to be much more that they could do, but one doctor said he would like to try. Thank the Lord for him! In September 1982 Kaylie was transferred to his facility and spent the next 15 months there.
Many things changed in that 15 months. We moved into our small city, wanting to be closer to our church family. Kaylie became more aware of her surroundings and in essence "came out" of her coma. The feeding tube was taken from her nose and surgically inserted into her stomach (gastrastomy). This made feeding and visits home a lot easier. The trach was tried over and over again to be removed but to no success. She had a vocal cord foldover done and when that didn't work they did laser surgery to remove one vocal cord.
While at this facility she did learn and act on one emotion - crying. This she did very well and for everything. Therapies, movement, rides home and back to rehab.
As time went on the head nurse made the "suggestion" that I should learn how to drive (she did this every time we met!). As usual I put it off, but one day it became a reality. Kaylie was being released. At first the doctors suggested we look for a nursing home because her care was so extensive, but I said I would never forgive myself if I didn't at least try taking care of her.
Kaylie came home to stay in December 1983. At home she learned how to talk with the help of Easter Seals, and she began to walk with assistance. Motor control improved and she was taken off some of her meds. And yes, at the age of 35, I learned how to drive! Little did I know how important that would be as my husband's and my roles reversed. I was the one now in total care of our daughter 24 hours a day. Feedings, trach care, diaper changes, therapies, doctor visits and follow ups - I fell into such a comfortable routine taking care of her on a daily basis.
Kaylie has been through a lot, as has the entire family. She now stays dry during the day and eats regular food. We were able to take a family vacation in 1991 (to Disney World for a week). It took a lot of planning, but it was a trip we'll never forget.
Kaylie was able to get home tutoring for a while and then was placed in the Special Education center in town. At the age of 21 schooling stopped and we had decided to give her a graduation party. We planned, saved, and had everything ready when my husband had to enter the hospital for heart problems and ended up having triple bypass surgery. Although he couldn't be at her party, we were able to pull it off for her with the help of close friends and family. He came home on a Thursday, my son left for Philmont, New Mexico with the Boy Scouts on Saturday and Kaylie came down with the chicken pox on Sunday. Who says life isn't a bowl of cherries???
We now have some caregivers who give us a few hours each week to try to be "normal" people, but as anyone who comes to the chat room knows, I've had my share of problems in this area. Hopefully things will settle down now.
This is the start of the year 2000 and we hope the future will be good to Kaylie. We have her name in a couple of residential places. She herself has said she would like to go some place else to live. She sees life going on around her and knows this is not how it is supposed to be. Her brother will be getting married next year and she spends some of her time crying and wishing it was her getting married, although she is happy to be getting a sister.
When Kaylie first became diabetic, we took it in stride. Jerry has had diabetes since he was 14 (nearly 40 years). Although we went to church periodically, we weren't all that religious. But once Kaylie got sick and we realized that no human could "fix" it, we moved on to a Higher Power and turned her over to Him. I won't say there aren't days when Jerry and I have felt totally alone, but we've never felt that way at the same time and have always been there to help each other get through the "down" times.
We belong to the United Methodist Church, a small church in which Jerry grew up. There were many church members who came forward in our time of need to help or just to pray. They have offered faith and love that is hard to come by. I can't remember a time when I didn't believe, although there have been times that I have strayed. But I have always been told that it is I who leaves, not God, and therefore He is always there waiting for me to come Home.
I was never a caregiver to anyone before so I had no examples to help me. Through all of this our family has grown closer. We have watched other families fall apart because of a difficult situation in their lives, and we rejoice in having a church family and very good friends who have kept us grounded.
I, of course, say a big thank you to each and every one of the people in the Empowering Caregivers chat room. Many nights I sit and listen and learn, while other nights I can contribute and feel good that I have helped.
As I finish this, I feel lighter. I can't explain it, but I thank you, Gail for asking me to write it. I have days when I think of maybe of one incident, but have never put them all together in a story. The other person I must give a big thank you to is Patti. She has inspired me and really uplifted my spirits. She is an honest and true friend.
My biggest thank you goes to our ever present guide and helper - God.