A Caregiver's Journey

Mother's ill-health was hard but the rewards were great. As a caregiver I gave comfort, support, medication, transportion, did hospital time, and prayed with and for her. In short, I did all that was needed in joys and struggles and was just there in her time of need. This is my journey.

Friday, November 10, 2006

Let me tell you about an opportunity I just had last week. I am part of a very small country church. We may be few in numbers but we are huge in personalities. There is a family of four; the man, his wife who has altzheimer's disease, the 17 year old granddaughter who is in the Youth Challenge program at the local National Guard base, and the 13 year old granddaughter who is gorgeous with a speech impediment and slight learning disability. The girls were adopted when they were babies. This man has his plate full, if you know what I mean!
He came to me two weeks ago and told me his heart wasn't working right - it was broke. A joke that really wasn't a joke. Living under that much stress for years takes its toll on a body. He wanted me to take care of his family while he went to the hospital for possible surgery. I told him I would talk it over with my husband and get back to him. My man said just what I thought he would, that the need is present and I should fill it.
I took my friend and his wife to the doctor that Monday morning. The doctor asked him why he waited so long...and gave him nitro glyserin until he could see the heart surgeon.
I took them to the next doctor that next Thursday morning. The appointment was at 8:50 and the doctor asked him when he could have a heart cath. My friend told him anytime - TODAY. We were over in the next set of offices and he was in the Cath Lab by 11:00.
My friend had a 99% blockage in the artory on the top of his heart and was headed for a heart attack. Thankfully, the doctor had no trouble putting in the stint. We stayed with him for a little while after they put him in a hospital room.
Then, Charlotte and I went to get the granddaughter from school. I took the girls home and started supper. They both know me and like me so there was no problem with attitudes. Luckily, I fixed a supper that they both liked, so we ate, did homework, and went to bed.
During the night, the responsibility hit me. I couldn't sleep. Just before 1:00 I dozed off. Just after 2:00 the light came on in my bedroom. I looked up and Charlotte was standing there, fully dressed with her sweater on but without her teeth. I asked her if she was ready to go? She said "Yeah." I told her that it wasn't quite time but would she like to go back to bed? Again, she said, "Yeah."
The girls got into a little tiff at one point. They are both about the same level mentally at this time. It will change later but they were cute in a very sad way. I still had to let the teenager know that she should honor her elder and not smart off to her. (Even when she starts things!)
Friday morning we brought my friend home. I fixed their lunch and made sure he could resume his responsibilities. Then I went back to my family.
That was a great learning experience for me.

Friday, October 27, 2006

Do you remember where you were and what you were doing when you first heard about the airplanes hitting the World Trade Center's towers?
Mother and I were getting ready to go to the hospital for her gall bladder surgery. My husband called me and told me to turn on the TV. They replayed the first tower over and over while we dressed in a hurry. We were now almost late for her check-in time.
As we were getting her in the gown and back in bed, the second tower was hit. They came for her and I went to the lunch room for coffee. That was a room full of appalled folks. None of us could understand what was happening.
The doctor found me still there talking and I was ushered to Mother who was now in recovery. A nurse came by to let us know about the other two crashes.
I think for a week, we just cried for those people and America. It is hard to get well from surgery after you have been terrorized. The human body is supposed to be at peace so that sutures can heal. Mother did not have the hard type of surgery. She had the three laser cuts so it wasn't as hard as it might have been. She was up and around in a very short time.
Healing from the heartbreak was a different matter. Our hearts were broken. That takes a while for mending. My Mother was a prayer warrior, which means that she was someone you could call and ask for prayer and she would pray for you for whatever your request might be. I'm sure she prayed for the families of those people as I did and for America as I still do.

Sunday, October 22, 2006

Mother was sick most of the late winter and spring of 1999. She had a hard time seeing her doctor because, again, he practiced keeping his patients well. That simply meant that the office was always full of well people who had appointments.
My husband and I visited her almost every weekend to get her groceries and clean her house. Mostly, I just wanted to be with her. She would call me at work and we would talk during the week. I think she didn't want to be alone but was too stuborn to give in and move near me.
She had four and a half acres next to me and we would talk about her getting a trailer to move into "just for the weekends." Mother knew that the time would come when she would need more than just visits but. like I stated, she was stuborn.
The growth started and was uncomfortable immediately. At first, she thought it was a hemorrhoid, and her doctor, over the phone, agreed with her. Then it grew faster and she instinctively knew it wasn't normal. She had the doctor check it and he sent her to have a biopsy done. It came back coleo/rectal cancer.
The surgery was done very soon and the surgeon came out to me and said, "If you have to have cancer, that's the one to have." It was squamish cell carcenoma, which simply meant that it was hard and solid and easy to remove. Chances were very good that it would never come back. BUT, just in case, he recommended that she have radiation therapy.
Less than two weeks after her surgery, Mother had a check up with her General Practitioner so that he could "see" her site. She had a physical with the Radiologist two days later even though she was still extremely tender. He ripped her stitches! Then, the very next week she started her treatments. She never had a chance to heal.
During all this time, Mother was teaching a Sunday School class of girls ages 10-11-12. She was also teaching a Sunday evening class of adult women. Also, on Tuesday mornings, she taught the WMA Bible lesson. During all the time of her treatments which covered the middle of August through the middle of October, she never missed teaching her classes.
Mother had four or five treatments each week and was burned thoroughly. She also had a three week period of no treatments so that the blisters could heal. It was so very painful for her to sit on her furniture that we went to find something that would be more comfortable. She bought two recliners - one for her and one for me. My mother was such a sweetheart.
During this painful time, she wanted to be included in a special group of classes that her church was having. It required weekly attendance and a lot of study. Because of all the medicines that she took, Mother didn't have much memory. That is the primary reason why she thought she could never be a part of this learning opportunity. Did I mention that she was stuborn? She joined anyway. After six exhaustive weeks of study, homework, and memorization, she finished with several awards...one for completion, one for highest honors, and one for being the oldest student.
Mother was also part of a prayer group. The members of her group were a deacon, a pianist, a secretary, and a retiree - Mom. They grew very close and at one point Mother mentioned to the secretary that she was having trouble being still because of the burn and discomfort. This lady asked for prayer for her right then and there. They all gathered around her and put their hands on her and bowed their heads. This was one of my mother's most precious memories. After that session, she was able to "stand" the pain and do her other work.
Since the radiation ruined her "feminity," Mother insisted on a private bathroom whenever we traveled. She loved to take trips and needed no excuse to pack her bags and go. We had some wonderful times together. She never regained control with bladder and bowels, so privacy was an issue with her.
She was never in great health after this, but she was healthy enough to go and do most anything she wanted. She was the person to call for one of her friends who was on life-alert. My mother was very dependable and I am so proud to be her daughter.

Thursday, October 12, 2006

In 1996 in the spring, Mother was given new medicines for her sporadic and rapid heart beat. Her body started doing strange things. Fortunately, her doctor kept a close watch over her. She went in for her
check-up on a Friday before she made the trip over to see me. I was working at the time and expected her to be at the house when I got home.
When I did get home, she wasn't there yet and I was told that she had called and was going into the hospital!
I called her while I packed. She told me that her doctor had heard her lungs fill up with fluid. He told her to go across the street to the hospital to the X-ray department. The film showed her lungs, both of them, full of fluid. She had had no sign of any problem before the office visit. I was flying down the road as fast as I could go since I was told she would have some sort of "procedure."
It was a three hour drive to where she would be. I got there at 10:00 PM and got to the nurse's station just as the doctor was recording his findings. I waited for him to get through and then questioned him. The
"fluid" had solidified by the time he could get off work to go do the procedure. He was frustrated.
Mother had gone through excruciating pain. She told me that the nurse couldn't even watch as the doctor pushed the needle into her lungs between her ribs in her back. There was nothing that would come into the needle. He had no idea what was happening.
Needless to say, we didn't leave the hospital for a while. She was put through many, many tests. She was even given skin tests for different reactions. The only one that came out positive was TB.
We were all told to immediately start wearing face masks and gloves. Poor Mother, she was horrified. Her doctor told her that HE didn't believe she had tuberculosis but that since the test was positive, the law stated that she must be quarantined.
We were sent home to her house and no one could come see us. My husband and son called me and asked if I was wearing the mask. When I answered, "No," my son started crying. He didn't want to lose both of us.
Mother had to take five or six weeks of medication for TB. During that time there was never any sign or symptom of it. We watched a lot of TV. Her friends and church family brought us her food and mail. They even rented movies for us.
I could go home only after the full medical treatment was finished. She was never sick, except at heart from embarrassment. Only after I left to go back to work did she have other symptoms.
Mother began to hurt in her muscles. She would have a lot of problems with swelling in her hands and arms. Then she would have joint pain much like athritis only sharper. Then she would have nerve problems. She had problems with holding a glass of water. She couldn't stand for long periods - like cooking her meals.
She called me after a few days of no talking and stated that the doctor had found what her problem was. She had lupus. Neither one of us knew anything about it. We learned some things. Mother's lupus was caused by the adverse reaction to her medications. It seemed that several types of medications together aren't so very good for a person.
After she discontinued that stuff, the symptoms gradually eased. I don't think she was ever totally pain-free after that.
I got her to take vitamins because she was so depleted. She needed the good things going in, not just medications.
We had some great times meeting up half-way during the next few years. We would meet and eat breakfast and linger over coffee. Then we would go stroll in the mall and watch the water fountain. Later we would eat lunch and rest our feet. Then we would go to WalMart and check out the craft area. If either of us needed groceries, this would be the prime time to get that. Then we would go get an ice cream before starting on the trip home again. Those were some precious memories.

Thursday, October 05, 2006

A Caregiver's Journey
When Mother told me about her "Out-of-Body" experience, I was shook to the bone. Not because I didn't believe her, but she told me what the nurses said and THEY were shook. Before, when my three brothers and all their families were with us, they upset Mother. She couldn't rest because she had to be strong for everybody. The nurses insisted that we all leave. I wasn't about to leave her, even to go a few blocks away to rest. I stayed in the CCU waiting area. That's where the nurse found me. When Mother showed a calmer demeaner with me, they wanted me to stay with her all the time. I will tell you this, "the work shoe that got in between her and the light" was bought by three members of the family within a few short weeks. NOT ME!!!
I could not get hold of any of the family when I needed them. One family was at church, one group was on their way back from LA to AL, and one brother was on his way to Shreveport from Baton Rouge. Even my family was having phone troubles. I felt all alone with the weight of my mother's future on my shoulders.
One of my sons graduated from high school during this time. I went the few hours home to attend this event while a niece spent the night with Mother. Wouldn't you know it, she was given a shot of something that reacted terribly with her blood pressure. My niece wouldn't come back to the hospital after that. I realized then and there that Mother was my sole responsibility.
I learned so much from her at this time. She wanted to talk about all the things I should have known years before but we were too busy to get involved in long conversations about. I even learned her prize winning recipe for chicken and dumplings. Mother was slow moving but never complained about pain to me. I could see it in her eyes and I watched as she shifted positions. That was my only clues. After she was able to leave the hospital, we spent many hours talking and laughing. I tried to always keep her up-beat. She was almost healthy for a couple of years after this.

Wednesday, October 04, 2006

I'll tell you the end from the beginning. My mother died from coleo-rectal cancer in the liver. Her death was the most beautiful and moving experiences of my life. It ranks up there with my wedding and the birth of my children. I have learned things since then that make me wonder if I had known then what I know now, just how long could she have lived? The caregiver part of my life began in 1995 when Mother had a series of illnesses in the spring which caused an inflammation of her pericardium, the lining around her heart. Her General Practicioner took a syringe and went in under her sternum and into the lining of her heart, but he nicked her heart. Her heart began to bleed a little. Her doctor spent the night in CCU with her. He sent me and my brother home but told us he would send Mother to a larger hospital two hours and thirty minutes away bu ambulance early the next morning. There, with all the family around, she underwent the same procedure only not as an outpatient but in surgery with a cardiac specialist and a cardiac surgeon. They tool a liter of fluid off her heart. The family left me and Mother as soon as surgery was over. That night she flat-lined...I know because she told me. I didn't think she knew what that meant, but she said she had to get up out of their way when the nurses came running into the room. She had an out of body experience! I joined the elitest of groups - my mother died and came back - now I was in the "Waiting For Her to Go Through It The Last Time" group. I know several folks who have jopined with me in that group. When she got over that episode, she took a secretarial course so she could help her church in their building program. Mother was 70 years old at this time.
My mother and I were the best of buddies. We could talk about everything in the world