Empowering Caregivers-Spotlight-Denise Faust

They were the best of days. They were the worst of days. They were the sweetest days my Moma and I ever spent together. They were lived "one day at a time," but each of those 137 were lived to the fullest.

Mrs. Doris Lee McIntyre Broome is my mother. She is in Heaven but she is still my mother. I never considered our relationship to be "close" as I grew up. I always felt as if I were a bother, feeling like she didn't want to know my problems. However, when I had my children she was always there to give me advice and assistance. The summer of 1974 was what we thought would be the worst summer of our lives. With a new two-month old baby at home, I had to be hospitalized again for abdominal pain which resulted in a miscarriage. After several hospitalizations that summer, I finally had my gallbladder removed in August. Moma took all of her vacation time to care for her new granddaughter and me. After that summer, we still didn't have what I considered to be a "close" relationship; however, I was only 19 years old and now realize I probably didn't know what a "close" relationship with your mother was supposed to be. After I became a grandmother, Moma and I became close. We had so much fun with my grandchildren. I didn't think things could be any sweeter than they were or that we could get any closer. What lay ahead was a profound closeness that words cannot describe.

My story begins on Monday, March 20, 2000 - the day my life changed in so many ways. Biopsies on Moma had been taken on Friday, and the results we got on Monday confirmed what the pulmonologist had feared -- small cell lung cancer. That same day she had a bone scan done at Piedmont Medical Center (the first of many that would indicate how extensive the disease was). Her cancer was in both lungs, the area between the lungs and bone involvement, which included her spine, pelvic bones and a "spot" on her skull. The cancer had also spread to her liver. The first of many miracles happened that day. Moma and Daddy had waited in the lobby of the hospital to speak with the pulmonologist, after which Daddy took Moma to their van to lay down. Daddy returned to the lobby and just as he and my brother bumped into one another, the doctor walked up and told both of them that the biopsies had shown the small lung cancer to be inoperable. My brother was there to be with Daddy as he broke the news to Moma. My family also rallied to show their support. Ron (brother-in-law) picked up my sister Marian from work so he could break the news to her in person. Chuck, my husband, came home immediately. I had been sitting by the phone all day waiting for Daddy to call.

It was the first day of spring and the first day of my diary. The entry says "This is the first day of my journal. Rachel is sleeping and Lake is in his chair watching Dragon Tails. I've been so weepy today due to Moma's testing. I've had a bad feeling about it."

That evening I headed to the computer to research small cell lung cancer. Prior to early February, I didn't know how to access e-mail much less use the "on ramp" to the information highway! However, that evening the Lord clearly said "No, don't look yet."

Arrangements had been made on March 22 for my grandchildren to be cared for so I could be with Moma while she had a CT of her chest. I was awakened at 2:30 a.m. and saw the moon shining in the window in the bedroom across the hall. I arose and entered the room, which used to belong to my son. The moon was magnificent, and a feeling of sadness overwhelmed me as I prayed. "Lord, you can make a miracle and call it the moon. Can't you...?" My spirit knew the answer before the request could be made. But the Lord in his goodness and mercy allowed me to FEEL what He spoke to me next. "But there will be many miracles wrought from this." I was surrendered to this will of God in a way that was beyond any spiritual feelings I had known. The only way to describe it was to say it was a feeling "not of this world." That description would be used so many times in the next 135 days. The Lord then said "Go look on the Internet."

The National Cancer Institute's hard facts confirmed what the Lord had been preparing me for. Extensive disease with liver involvement - prognosis poor. Six to fourteen weeks' survival from the day of diagnosis is given. When I saw the prognosis, the Lord said "That is for your baby sister." At this point I was afraid, because the presence of the Lord was so real, what He was saying was almost audible and I was begging, "Please don't show me any more right now!!!" Later that morning when I told my siblings that "our Moma ain't long for this world," I could just imagine how crazy they thought I was when we didn't have any medical proof to back up that statement yet. After the results were in, the oncologist told her that without treatment she could live six to twelve months, but with treatment that could be stretched to eighteen to twenty four months.

Pain medicine was not helping her back pain, which had been the reason she had gone to the doctor on March 14. She took chemotherapy March 27-29. She didn't look or act like herself again until April 19. Subsequent radiation treatments to her spinal tumors relieved her back pain after the first treatment on April 6. She immediately began having weakness and pain in her right leg, which was constant until she had hip replacement on May 25. I had begun to believe her hip was cracked, and on May 24, the orthopedic surgeon explained that it was broken and "trying to fall off." He was referring to the top of the leg bone that fits into the hip socket. He couldn't believe she had walked on that leg until that day. What a high threshold for pain! What a strong woman! What a wonderful mother!

My mission was becoming clearer with each passing day. The Lord spoke peace to my sweet Moma through me. It's a feeling I can't describe except to again say "it's a feeling not of this world."

Caregiving for a loved one encompasses many things. Firstly, gathering information so that you can (secondly) problem solve. There are obstacles that have to be cleared every day. The first 46 days of this journey from my standpoint were consumed with feeling torn between my "job" as baby-sitter to the grandchildren and being there for them, wanting to be with Moma, and needing to learn every detail of what was happening with her. Changing roles, juggling roles, ranges of emotions - they all have to be dealt with. Trying to allow Daddy to remain the "lord/master" and decision maker for his household was the first obstacle I dealt with. He was trying to handle it all like the man is supposed to, but when you have never been a caregiver to anyone or dealt honestly with your feelings about sickness and death, you might as well "hang it up." Moma would not ask Daddy to do anything for her. In part, this was due to the "old timey" way women took care of women and men did "man things." In another way, Moma was trying to make Daddy stand on his own two feet. He is a diabetic with Addison's disease and Schmidt's syndrome. The latter two complicates the first. He never feels his blood sugar dropping anymore; therefore he has an emergency Glucagon shot that we give him when suddenly he isn't himself. To be honest, Daddy let Moma take on the responsibility of making sure he checked his blood sugar level often, trying to keep him on a regular sleep schedule since his retirement ("He'd lay in that bed till non if I let him!" she would say), constantly watching to see how much insulin he was taking according to the sugar level reading, etc. How exhausting for Moma! She confided to me that for the last couple of years it was not uncommon to wake up in the middle of the night to find him in the floor rocking back and forth, or on the couch unable to respond to her in any way. Moma knew she had to make him totally able to deal with his diabetes on his own and she didn't have long to do it. During the 137 days she was sick, he had countless insulin reactions. Paramedics came on two occasions to give him glucose because he had become so combative with Moma and me. On July 7, his blood sugar dropped while driving his truck and he ran off the road. The truck was a total loss and from that point on he was more cooperative as far as checking his blood sugar when we asked him to without acting like we were hovering over him. He continues to have sudden drops and had had one on the day he wrecked his truck.

The Broome side of my family are avid worriers, taking it at times to the level of "art form." The doctor said worrying about my mother was using up all of Daddy's sugar; therefore he would end up with an insulin reaction and need immediate ingestion of sugar. Since Moma left this world, he has not had any reactions that he couldn't handle. I have told you about Daddy so that you would understand more about Moma and what she felt she had to do before she could leave this old world behind. Listening to her talk about Daddy and the fact that they had not had any outright conversation about "feelings," the Lord began orchestrating situations with Daddy where he couldn't get out of at least listening. This began with him listening and crying. In the end, the Lord dealt with Daddy and all was well when Moma crossed over.

Father's Day, June 18. Twenty four days post-op hip surgery. Moma awakened and "couldn't find her words." She was admitted to the hospital for the neurologist to be called in on her case. The bone scan done on March 20 had revealed a "spot" on her skull, and the brain scan that followed revealed no involvement of the brain. This "spot" was the latest crisis. It was a tumor in the bone, growing and pressing against her brain that caused her to lose her words. We found out before her discharge that she was also unable to read. This was so upsetting as she had always been an avid reader and she had even said "I can pick up a book and escape from reality for a while. If I couldn't do that, I think I would lose my mind!" This was the first time she acted unable to cope. She finally saw a neurosurgeon on June 26 who recommended radiation for the spot on her skull and steroids for the brain swelling. This doctor was the first to look at Moma and ask her "are you aware of how much the cancer has spread?" She answered him matter-of-factly "yes, I am." He asked her if she would rather be spending time in the hospital or at home with family doing the things she liked to do. Her answer was, of course, at home. Once again the Lord was making things fall into place. Surgery to her skull was never an option. Why would he ask her such "end of life" questions had it not been The Almighty once again orchestrating things?

June 29 began the first of ten radiation treatments to her skull. On July 4, Moma was able to read again!! That afternoon her collarbone broke. The following day the doctor said the cancer in her bones was causing them to break. On July 6, I made the first visit to Hospice Community Care. The told me to choose a doctor we trust to be her referring/attending physician for the Hospice experience. We requested the referral on July 10. Her last radiation treatment to her skull was July 13, and Hospice made their first visit on July 14. She kept saying "but I don't feel like it is the end." She thought she was going to have to get in bed and die if Hospice came. Hospice told us they would visit only as often as she wanted them to and that they could handle refilling her pain medications over the phone. She promptly told them we had a grandchild to be born on Monday, July 17 and plans to go to the aquarium in Charleston on July 24. In other words, "don't call me, I'll call you when I get a minute from my busy schedule!" In her home, with the people she wanted to be around and doing what she enjoyed doing, she was pain free. She did it her way! On July 17, she not only accompanied Daddy to his doctor appointment but also went to the hospital that evening to hold her new great-grandson. Daddy had another appointment at the Veteran's hospital on July 20. The swelling in her feet had not gone down from Monday's trip so I was going to arrange for my sister to come stay with Moma while I accompanied Daddy. Unfortunately, I was informed that Moma had plans for the two of us to do some shopping across from the VA while Daddy kept his appointment. Swollen feet or not - Moma was going anywhere she wanted to go! Even if I had to tote her piggyback. She kept walking off and losing me in the store while making me push the wheelchair. She wanted a buggy! (Buggy is southern for shopping cart.) She particularly wanted to shop for picture frames that would be nice for a memorial service - her memorial service that would take place only two weeks later.

We had a big family cookout with all of her sisters, brothers, nieces and nephews. We drove to Charleston to the aquarium and then back to Savannah for a buggy ride. She returned home to let the family know that she was ready to cross worlds, and little did she know she was giving them all only a week to prepare. What a woman!

Daddy was the last one to let go. Thursday night at 11 PM, he finally came into her room, rubbed her arm and said, "Cooter, now if you need to go on you go on. I'm going to be all right. If you need to go, go on." Midnight came and at 12:10 AM, Daddy walked back into her room where I was sitting, stood over her for a minute, kissed her and said, "Well, Dink, I'm going on to bed." Walking around the end of the hospital bed that had arrived the previous day, I spoke these words to my sweet Daddy. "Well, come here and give me a hug." As we were hugging I told him, "now Daddy, you know that when you wake up in the morning Moma is probably going to be gone." He nodded his head yes and quaked. "I love you, Pop" were the words I ended with. He said "I love you too" back over his shoulder as he left the room.

I takes about twenty minutes for Daddy to get settled and asleep, which is how long my Moma waited before she began "hard dying." It was 12:30 am. Moma had not spoken in twelve hours. She was at Heaven's Gate, not aware that the diseased body she was leaving was blue and her strong McIntyre heart would not stop beating. That heart of hers didn't know the lungs had given up. I was distressed and called the Hospice nurse who was shocked that it was happening so fast. She told me what medication to give Moma and that she was on the way. Ativan under the tongue. Baby sister holding her right hand and me holding her left. Silence. The one hard breath in and out. A soft breath in, and on exhaling my Moma's face transformed!! She didn't have a wrinkle on her face! Oh yes, I was on my feet asking "Whatya seeing, Ma?" I asked her if it was Pee Wee (her sister) she was seeing, as she had seen her earlier in the week and Pee Wee had been in Heaven for a year. I was imagining them all there....the ones who had gone on before. But then as her face fully transformed into that of a young woman, I knew who she saw. Our Savior, Jesus Christ! "Go on in, Moma. Go on in." And as she exhaled her last breath, I quietly said "I love you. I'll always love you."

When I found Empowering Caregivers, I felt a drawing of the Holy Spirit. I had posted on the board at a site for families of lung cancer patients. One of the girls there directed me to Empowering Caregivers, and I was so relieved. As I looked over the resources, I knew if I didn't see what I needed in print, somebody on THAT site would help get my needs met. Was that an understatement!! You guys and my husband are the only people holding me up now and were the only people holding me up then. Other family members are upset about the choices Moma made about dying at home and being cremated. Always, when I have felt my lowest but would finally struggle to get back to the site and post, I have found everyone encouraging me and supporting my decisions. Although I felt inadequate, the encouraging words helped me make it through the worst time in my life and heal relationships in the process. I didn't understand how that could happen, but I do now.