GOOD GRIEF
The year of 2008 will always be remembered as the "Best of times and the Worst of times" to borrow a phrase from a famous writer. It is the year I lost my brother to ALS and the year I saw my daughter marry her high school sweetheart. We ran the gamut of emotions and it aged me mentally and physically. Here is what has entailed the last year of my life.
The Good:
The Husband started out the year having his new book published and it turned out to be a huge success. He was on all the talk shows and did many book signings and was very pleased with himself. No one thought he had another book in him (not even himself) but with much urging from a dear friend and an enthusiastic small publisher he did what he always does, win.
Our lovely Daughter married her high school sweet heart. They have actually been dating since junior high but that does not sound as lyrical as "high school sweethearts" and truth be told they were not actually in love until high school so I guess it is not completely dishonest to proclaim that title.
They had their ceremony at a little farm that was owned by the same family for 3 generations spanning over 100 years. The current owner is a former judge who stands only 5 feet tall but has a personality of a 7 foot tall man. He was 87 years old and rode a golf cart around the property (which is now exclusively an outdoor wedding chapel with lovely gardens in themes for whichever mood the current couple paying for the space is in) instructing everyone where to go and where to stand, when to begin and when to leave. His voice was loud and clear and judicious and the ceremony was perfect.
Our daughter's old show horse delivered her to the altar in a small cart driven by the horse's current trainer who our daughter now works for part time. It was the horse's final performance in front of a crowd. He was dressed in a highly polished black harness with ribbons in his mane and tail that matched the wedding color theme and his hoofs were painted with silver glitter and shown so sparkly as he pranced delicately to the gazebo where the groom waited, the audience anticipated and the parents of both parties cried with joy. His retirement was announced by the judge and tears were then shed by the entire company of guests and relatives and friends. It was a glorious day for everyone. We were overwhelmed to find that 300 people attended the wedding and reception and everyone still talks of what a beautiful event it was and what a wonderful time they all had.
My little Sister's husband finally left her . Now this may not seem to be a good thing to some people but for our family as a whole, it was a blessing. We had been begging this poor woman to leave him for years but she was too afraid of trying to get by on her own. She has Lupus and her Son has Cystic Fibrosis so she did not think she had the energy or the skills to be able to support herself and her son who is still in school and has other disabilities besides the CF. We, as a family, assured her that her Ex-husband's wear and tear on her and her son's emotional well being was way more scary than facing the world alone as two disabled people. We, as a family, also assured her of our support both physically and financially so the break up was a much smoother operation than it one of that type would normally be. The Ex-husband was not as inclined to bully and posture when facing the entire family of relatives of his wife than if he had only her and their son to intimidate. The Ex-husband was never physically violent but his mouth was as brutal as any fist or weapon and has left both with the equivalent scars on their physche. My Sister and her Son now have a nice two bedroom apartment in a building equipped for the disabled in a small town close to shopping and recreation and her son's school. They have a small government stipend (less than $700.00 a month ** the Ex-Husband cannot pay child support as required by state law ** he says cannot find work and he has certain dependency problems and he is mostly lazy , living off his parents) because my sister recently lost her job at a store selling wedding gowns (we bought our Daughter's dress as well as the bridesmaids dresses there to help keep it in business while she worked there) due to the down turn in the current economic situation but still looks for employment. They are happy to be out of their former stressful situation and try to have an optimistic outlook for their future.
Two weeks after returning from Paradise abroad to the Paradise of our other home a small unobtrusive pipe in a wall in my Husband's office broke flooding the northern half of the lower level of our home. OK, this sounds really depressing but it turned out to be a wonderful gift.
1. Our insurance paid for everything
2. We got rid of the old horrible white shag carpeting that came with the house and we all hated
3. We got the piping redone so as never to happen again.
4. We got all new paint on all the walls of the room affected which is so nice and fresh
5. We finally had to sort out and clean the storage room !
So for a month and a half of complete disruption of our lives complete with strangers going in and out of our home from 8 AM to 5 PM everyday and giant driers blowing for two weeks day and night and seeing our prized possessions being hauled away to a storage facility and all the coordinating and craziness that went into it we ended up with a completely remodeled and redecorated entertainment room, office, kitchen and bathroom in our lower level a month before our daughter's wedding . How perfect is that!
My Niece and her Husband (whom we all LOVE) are pregnant with their first child! We cannot wait. My Niece was the first grandchild of my Parents and she has always been special to me of all my nieces and nephews because she made me an Aunt for the first time. We are all breathlessly waiting for the sonograms or ultra sounds or what ever they are called when she brings them to family gatherings . Unfortunately, I cannot see the baby shape in them. To me, it looks like a chicken embryo! Of course I ooh and ahh like everyone else and pretend to see a foot or hand or face but it seems more like a Rorschach ink blot test than anything like a human being. The baby shower planning is in full swing with no less that 3 already on the social calendar at this time. My Husband is questioning the need for so many parties for one baby but he does not understand the need for females (even those who no longer can nor wish to or are ready to procreate) to shop for, handle and buy baby clothes and then present their unique perspective on what the new Baby needs to other women of like minds all, of course, obscured by bags and boxes and paper and bows of pastel pinks, blues, yellow and green. Anyway, we are all thrilled for new life in our family.
The Bad:
We attended way too many funerals and those we could not attend were sent phone calls and cards and flowers and memorials. The Husband saw his friends lose parents and he also lost some friends. None that were too close but that he had known in high school as fellow athletes or acquaintances. Together we said goodbye to old friends of our parents generation and parents of the friends we share as a couple. It seems the older we get we are attending multiple funerals every year. We keep forgetting our age and what type of life we will be leading in our future and it definitely includes lots more funerals. That in itself is depressing but the good news is we are still healthy and active. Knock on wood.
The really bad part of last year was the torture my poor Brother endured the last year of his life and how it has impacted our family.
Let me start with a quick synopsis of our lives as children with our parents. Our parents were not well off while they were together and started our family. This put a lot of stress on them when the family grew to 4 children. Remember that birth control was not something we would consider 100% reliable in those days and large families were the norm. Consequently their marriage ended after only a little over a decade. My Mother had no high school diploma, no drivers license and 4 mouths to feed. My Father was having troubles of his own and we knew not to rely on his support but that he did love us. To make a long story short, our Mother worked two jobs. A day shift and a night shift. During the day she worked at a small restaurant that was family owned and they had an office with a TV where my little brother who was a toddler spent his afternoons being watched over by the restaurant owners or their wives or our Mother on her breaks. We were lucky that she was usually home to see us older kids off to school. She was usually on her way home when we got off the bus. She would then clean up and show me what was made for supper in the refrigerator or she would bring us home food from the day job . After looking at what school work we had to do, giving us our chores for the night and kissing us goodbye our Mother left for her second job, also at a restaurant. We were left to our chores, school work and I would put to bed the younger children and then myself. Mother came home around midnight.
This life style made us a very close knit group. We felt it was us against the world. Our Mother eventually (by attending classes on her nights off or weekends) got her GED diploma and her drivers license (we were really happy about that as we did not have to take a cab to the grocery store, imagine a mother 4 kids and bags of groceries in the back of a cab!) I tell you this long story because it is important to understand the impact on all of us when one of the five of us has died. It makes sense to explain our dedication to each other and our reliance on each other as a support network from the time we were very young and impressionable. We were so very lucky when our Mother found our Stepfather and they married as he turned out to be the man who would most influence all of us and give us the fatherly love and affection and guidance we so sorely lacked for many years. He never had children of his own and yet was as good a father to us and loved us as if we were.
Now back to the story of my Brother. My Brother was the youngest of 4 children with 3 older sisters to love and torture and school him until he left home. He was a wonderful and very happy baby and little boy. He and I became close because I was the care giver when he was a baby and when our Mother was at work. That was a lot of hours for us to be together. Our relationship stayed close and strong though out our lives even after I married and traveled away with the Husband and had my own children. In fact, after I had children and the Husband still had to travel for work, my Brother as a young unmarried man spent many weekends at our home helping me with my kids and making me laugh.
His marriage and having his own two sons made us unable to be together as much as we wanted to but it was a natural change of life for us and it never broke the bond. Sometimes he would come to my house when his sons were older and my children were gone and we would still have hours long conversations about our lives and loves.
My brother was always a healthy person and ate and exercised. He was not a fanatic but he knew the value it added to your life. He had recently found his dream job and was working his way up the ladder and receiving promotions and salary raises. He was a regular church goer and a very involved member and a became a Deacon. He even volunteered to go to the homes of the aged or housebound and drive them to church. He was the president of the PTO for his children's school district. He ran fund raisers and changed the rules and became very well known in his community . He even fought city hall and won over a home owners rights problem.
About a year and a half ago he went in for his regular physical exam and a colonoscopy was recommended and done as he was in his 40's and had never had one. It came back showing some polyps that had to be removed but it was nothing cancerous or anything. A few months later, he was having bowel problems and he went back to learn he had colitis. A few months after that his condition escalated to ulcerative colitis. It became much worse and he was hospitalized. He lost 90 pounds in two months and somehow became infected with the C-Diff bacteria and it almost cost him his life. He missed 6 months of work but was so well liked they saved his position for him and paid him half salary. He began to battle back from the ulcerative colitis, found the food and drug combination that kept him fairly comfortable and his condition stable. He began feeling so much better and stronger and returned to his beloved job. During his return to work, after only two weeks, he found 3 inefficient programs and retooled them and was told another promotion and raise and possible new job description was in the very near future. He was happy and full of excitement to get his life back in order. His wife had missed a great deal of work during his long illness with the colitis and she was glad to get back to her job and to be a wife again instead of her husband's nurse. Their two sons had also suffered watching their father's struggle and were also glad to begin again. My Brother and his family came our Daughter's wedding and he danced and ate and drank wine and laughed and we have photos of him and video of him wishing his niece and new nephew in law a long and happy marriage. Everything in our extended family seemed to be going along so well.
One day Burt was at work , he stood up from his desk chair and turned to walk to the restroom, took a step and fell down. He fell so hard that he broke his hand and required 20 stitches in his chin. He thought he must have tripped on his shoe laces. He did notice that one was longer than the other. We joked and kidded him about his clumsiness and we all thought that is was due to his general weakness left over from the long bout with ulcerative colitis . My Brother fell 2 more times but was able to catch himself and break his fall so he did not get hurt. He started to feel very weak. One day after work, he found it very difficult to walk to his car in the parking ramp. He could barely turn the key in the door to open it. After he entered his car, he found he had no strength left to simply turn the key in the ignition. He found a way to do it by using a pen through the key ring and using it for leverage to turn the key and start the car. He felt fear flow through him as he had no idea what this new weakness was or where it came from. He later told me the drive home that afternoon was an utter nightmare for him. He had trouble just operating the steering wheel to keep the car on the road. Changing lanes was almost impossible and he was near tears when he finally pulled into his driveway. He never drove to work again. After hearing of his terrible day, his wife insisted they their doctor and he in turn sent my Brother to a specialist in neurology. In one week my Brother needed help to get into bed and go to the bathroom. In one more week, he was using a walker and could not feed himself. Another week later, he was in a wheel chair and could not walk nor take care of himself. That week the specialist had the tests they ran on him back. My parents and my second Sister and my Bother and his wife all went to the specialist office to hear the results. It was the worst it could be . ALS. Lou Gehrig's disease. The results are fatal. There is nothing to stop or slow it. There is no cure. My Brother was going to die. They gave him 3 months at tops, possible only 2, left to live. To love his children and his wife enough to last them the rest of his life and theirs. To say goodbye to his extended family and his many friends and his existence on this planet. We were all so devastated that it is unexplainable in words to tell you how it feels unless you have gone through it. His health insurance did not cover home nursing care and his poor wife had used up all her sick leave, vacation and other kinds of leave when he was so ill from the colitis that she could not stay at home with him. My parents were retired and so were his wife's parents. Due to the extreme personal nature of my brother's care, he was more comfortable with his own parents doing that so his wife's parents became the errand runners and helped get the his two sons to school and church and community functions. After a week or so, our parents were so worn out it was decided that I (who had no real job other than what I always did as a homemaker) would help out. Our parents took the morning to early afternoon and I took the early afternoon to evening and stayed until the boys and his wife were home. Our schedule worked out very well but it was very tiring and extremely hard emotionally to see him deteriorate daily and try to stay positive and cheerful for him as our hearts were breaking. Our two sisters (one had two jobs and the other had Lupus and her son with his CF kept her very busy) did whatever they could and they came to visit on the weekends so our parents and I could attend to our homes and rest.
At one point, the professional caregivers that were helping our sister and her son with CF learned of our Brother's illness and provided 30 days of in home care for free! We were overjoyed! The woman they sent to help us was a very small person but had a huge heart. There always needed to be two persons to pick up my Brother to get him in the wheelchair, to put him on the toilet, to bathe him, get him out of bed, dress him and into a chair. Her help allowed one of our parents to stay at home for the day and in my case, made it so much easier to take over more of the duties my parents had to handle themselves before I arrived. I have to let you know that my parents are in their early 70's but were so healthy and strong and had such love and compassion for their son that it was never a question that they would not be there for him at a moments notice during his entire illness.
The worst of this disease is when the victim can no longer speak for them selves. ALS involves the nuerons of the nervous system. They begin to slough off the nerves so the brain can no longer deliver the messages to move to all the parts of the body that are brain controlled. Your heart will continue to pump with out your brain's telling it to and your digestive system will also continue to do it's job without the brain. However, you won't be able to breathe or swallow or talk or move or blink you eyes unless your brain can deliver the message to do so.
At the stage of ALS when my Brother could no longer speak, he used his eyebrows , raising them up and down or he would blink his eyes for yes or no. We found his entire personality and sense of self could be shown through the espression of feeling in his eyes . Then came the day he could no longer blink and we were bereft. It was the last two days of his life.
My Brother refused the throat operation that would put a breathing tube in it to his lungs so he could be kept alive. He tried to not have a feeding tube but as his body deteriorated his colitis came back with a vengence and he had tubes for his feeding and his bowel movements at the end.
Through out his illness, he maintained his positive attitude, his faith in God and his ability to direct his medical care and quality of life. We were amazed at his endurance and his determination. He lived just as long as the specialist had originally predicted. It was the fastest moving case of ALS the doctors had ever seen They called the Mayo Clinic and Harvard University Medical School and Reseach Hospital to try to find out why but no one could answer the questions.
We kept him at his home as long as we could. He was hospitalized twice and we brought him home as soon as they would let us. We had his 3 season porch made into a 4 season comfortable place where we put his hospital bed and he could look out the many windows and see his yard and the birds and squirrels in it. His beloved yellow lab and his smarty pants black and white cat were able to visit with him.
His last day at home we had finally called for a hospice nurse. He was having trouble breathing and we were giving him oxygen and using a machine to clear his nose and throat of the mucous that kept collecting because he could not clear it himself. He could only look at us with love and though we all tried hard not to believe it, we knew he was in his last days or even hours. Many family members and friends and his minister were coming and going and telling Burt how much he meant to them and how happy he was a part of their lives. We all prayed around him and made him as comfortable as possible. We did not stop any feeding or breathing help. At about 6 PM that evening I suddenly felt very nervous and very exhausted. I had been there at my brother's home since the early part of the day and we had all taken instruction in other new treatments for the end of his life. I went to his side and told him I needed to go home and rest for a bit. There were still many people there including our parents and his wife's parents and other family members. My brother's eyes gave me the go ahead and he had seemed to be rallying and getting new strength. I felt confident that I would return either later that evening or in the morning. I got in my car and headed for home and cried as I was driving. I was so full of emotion and heartache and so tired that I called the Husband and asked him to talk to me to keep me on the road. I found myself looking around and not recognizing any of the landscape looking familiar and was terribly afraid I was lost and would not find my house. How I got to my driveway I do not remember at all. I came in and went straight to the Husband and collapsed in his arms. We ate a light meal and I sat in my favorite chair a human vegetable. Suddenly the phone rang and my Brother's youngest son said, "Auntie, you need to come back." "Why what has happened? Is your father worse?" My nephew's sorrow and fear became so papable over the phone line that my heart began to race and I my stomach clenched in fear. His reply was,"Please, just come right away!" I ran around the house finding my purse and my shoes and the Husband stopped me and told me in no uncertain terms that I was not driving myself to my Brother's home. We walked into the house and up the stairs and someone, I cannot remember who, said that my Brother had just passed. I felt the words in my entire body. It was as powerful as a blow. The Husband reached out to me and then I had to go to my Brother. He was still in the exact position that he was in when hepassed from this life into what ever he believed was out there waiting for him. His eyes were half closed, his mouth hung open, his head was hanging on the side of his pillow. His wife and sons and the family dog were ain chairs at his bedside holding each other crying silently. They looked up at me and told me it was a very peaceful passing. My Mother was crying like a helpless child and my Father was holding her fighting the tears in his own eyes to be as he always is, the rock of our family.
I had cared for my Brother so long that I could not stop myself from continuing doing so. I held his hand and told him how much I loved him and was surprised that he was still so warm. I closed his eyes and told him I was going to make him more comfortable and repositioned his head on his pillow. I gently moved his arms to his side and after kissing each of his hands, I put them on his stomach, one on top of the other. I straightened his legs and smoothed his blankets and sheet. I took out his feeding tube and we turned off all the machines that kept him on earth with us. I kissed his forehead and sat at his side a respectful distance from his wife and sons so as not to intrude on their grieving.
It is so strange to look upon a dead person that you have loved and cared for all of their life. It is a body you recognize and but it is so clearly empty of the one you loved. I kept thinking, did his chest move? Did his eye lid twitch? I could not stop looking for signs of him still there. Later I was consumed with the comfort of my Mother and Father and Sisters and our Daughter and he Husband. (our son had to fly in from our home in Paradise where he had taken residence for a while and that is another blog story!) Our Daughter was uncertain if she wanted to see the dead body of her beloved Uncle but then decided it was good to say goodbye. She too kept asking if his chest had just moved and watched for signs of life. Her Husband, my new Son in Law was so kind to her and our family. I was so glad she had him to cry with when she went home. Later the coroner was called to give a final affirmative of death and the cremation society came to take his body away. My poor Mother could not bear to see her son taken so my Father took her home. My brother's wife and one youngest Son could not watch it and went itno a bedroom. I stayed and so did my Daughter and the Son in Law. When the men arrived to take my Brother's body, now there were only two. Even with my Brother's fraility, the men were unable to handle him on their own and my wonderful Son in Law stepped up and took a side as did my Brother's oldest Son to take him down the stairs and out the front door. I told my Mother before she left that I would make sure he was not alone when he left and I walked with his body out to the hearse and told him goodbye from me and all his family and his Mother and Father and kissed his forehead one last time. It was a very wonderful moment for me and a final goodbye that left me comforted.
Grief is a very personal thing. In the United States, you are allowed about a month of intensive crying and sadness and then maybe another couple of weeks of quiet grief. Beyond that, if you have not gotten over it people think you need to seek a doctor and get medication. My Mother and has cried everyday since her son died. She is unconsolable. My Father cries when he is alone and spends the rest of his time helping my Mother. If it were my child, I would be just like my Mother. I do not know how you can stand the los of your child no matter what their age. I myself still feel the loss of His presence. I could go without seeing or hearing from by Brother for a month and never give it a thought. I often did when we began to live in Paradise. Now I think of him daily. I wake up at night and think of him and his suffering. I dream of him and how he was before the terrible illness that tortured and then took him away. After our return to Paradise, I built him a shrine of rocks and shells and wood from the beach and put a solar light outside of it and a candle for night time to shine on in the world and let me feel close to him.
I worried a great deal about my Mother and Father until one day here in Paradise I received an invitation to a Memorial service at the home of the Rancho Family that lives next to our home in Paradise in the arroyo. Their son had died 4 years ago of kidney failure. Every year they have a gathering of their friends and family members to help them grieve the loss of their son. The local priest comes out and gives a short mass and communion is available for the deserving. He gives a sermon of comfort for everyone and reminds them that their beliefs say their son is not dead, just gone to a wonderful place where he suffers no more, is happy and is in the company of other family members, friends and loved ones who have gone on from this earth. During this time the Men are at the back of the crowd and the Mother and Sisters of the dead son are in the front and the rest of the female family and friends surround them. Everyone is either crying or sniffling or has eyes wet with unshed tears. When the mass is over a great feast is served and everyone is hugging each other and laughing and talking and telling stories of the dead son. Friends and neighbors chat and everyone has a wonderful afternoon of hope. When I was saying my goodbyes, I went to the Mother of the dead son and after thanking her for inviting me and for the wonderful food I asked her if the pain of her son was still so sharp. She knew I had lost my brother and she looked at me and said," The pain is the same today as the day he died, it never goes away, I have just learned how to live with it." I told her how my Mother was suffering over the death of my Brother and she said,"Let her cry, let her grieve it is her right as his Mother and it will help her." I was so grateful to hear those words. It lightened my day and my heart. I immediately emailed the experience to my Mother and Father and they were relieved to hear it is the same experience world wide. We will have a memorial service for my Brother on his birthday now every year. Some grief is good. It is there for us to use and to help us get over things we cannot understand nor bear. It is the grief that makes it bearable and allows us to live and continue to find love and beauty and joy in a harsh world. Just writing this post on my blog has helped me to remember and get rid of some of the sadness that is still in me. I am sorry it is so long. I really needed to do this.