CAREGIVER OF THE MONTH SPOTLIGHT
DAN HANLEY AKA DMHANLEY
FORREST GUMP GOT IT RIGHT
Life is like a box of Chocolates; it comes in a bright shiny box with ribbons and bows. When you open the box your heart fills with wonder and joy. As the years go by you eat of the Chocolates. The candy is sweet and grand but now and then you bite into a bittersweet one. Your faith tells you that there are still many sweet pieces left in the box. Alas one day the box is empty but the sweet taste of life will remain with you forever.
Friday, March 13,1953, 09:30 Hr. March AFB, Riverside, California. On this day, at this place began a great Odyssey of two kids born in the Depression, Hardened by War and Strengthened through Adversity. They were and are very much in love. This Odyssey will last long beyond Infinity.
I was born and raised in Chicago, ILL. and enlisted in the U.S. Air Force in Dec. 1951. After Basic Training and Aircraft Maintenance Training in Texas I was assigned to a B 29 Bomber Sqdn. in Riverside Calif.
One night in early Oct. 1952 a buddy asked me if I wanted to go with him to a USO dance at the base recreational center. This was my first time to a USO dance and thought it was just like a high school dance, with boys on one side of the room and girls on the other side. After a while I spied a long legged redhead standing with another girl at the far end of the room. I walked over and asked her if she would like to dance. She said yes and told me her name was Doris (Doe).
As we began to dance something inside of me said, "this girl is the one and only one for me". We danced all night. When the band began playing 'Good Night Irene' Doe said that's the last dance tonight. I wanted to ask her for a date but had been told USO hostesses couldn't date servicemen they met at dances. When I asked if she would be coming to the next dance, she told me yes and she would also be at the USO dance at the YMCA in Riverside Friday night. Yes I made the dance and many more, Doe and I broke the rules and began dating.
Our courtship went at a fast pace. In mid-January I ask Doe to marry me. Getting married in the Air Force was not easy. I had to get my Commanding Officer's and my parents' approval. My mother, in her wisdom, only agreed to sign the approval form if we were married in church. We were married in the March AFB Chapel on March 13, 1953.
Married life in the Air Force was full of uncertainties. The hours were long and I was sent on many TDY's (Temporary Duty Elsewhere). These TDY's would last from a week to ninety days. I was promoted to Staff Sergeant in May of 1955 and had thought about making a career out of the Air Force. The stress on Doe, low pay and the TDY's changed my mind and I was discharged in December 1955.
Doe became pregnant in January of 1957. The doctor told us she would have to be careful because of a blood condition know as RH Negative Factor. Things went well till early July. Doe was hospitalized in toxic shock. The doctor assured me Doe would be OK but he was not sure about the baby. On August 6, 1957 Doe delivered our first child - a girl (Terra Lynn). She was about a month early and a very small baby, weighing only 3-lb. 8 oz. This was a very stressful time for us. Doe was still overcoming the effects of the toxic shock, Terra was fighting for her life and I was laid off because of government cutbacks. Because of the depressed job market in California we relocated to Chicago in December.
By 1959 things were going well. I had a good job and Doe was pregnant. On August 14, Doe delivered our son (Daniel). On July 23,1962 Doe had our third child Scott. Things did not go well - the effects of the RH Negative Factor showed up and Scott had to undergo an immediate blood transfusion. The transfusion did not work, and Scott died during the transfusion.
In the spring of 1965 we returned to California. Doe was diagnosed with uterine cancer in 1968 and had to undergo a hysterectomy. A keloid developed on the incision site and she had to undergo several months of radiation treatment.
Early in the year 1970 Doe began to experience vision and balance problems. She underwent several tests in the hospital but nothing could be found. Her doctor suggested we get a second opinion from a neurologist. I took Doe to Chicago to see a neurologist. The neurologist gave Doe a letter to take back to her California doctor. When we returned home Doe met with her doctor. The neurologist had diagnosed MS (Multiple Sclerosis). The doctor told her that was also his diagnoses and explained what MS was and what she could expect.
At first MS was more an inconvenience than an illness. We could not do all the things we used to enjoy so much. Gone were the long walks in the evening and the overnight fishing trips to the ocean. Incontinence also became a problem so we never strayed too far from a bathroom.
We had been told there was no cure for MS and not much in the way of treatment but we still kept looking. Doe met with several neurologists and underwent several tests at MS Clinics. The answers were always the same - nothing new but lots or research ongoing. Doe also began to receive advice from family and friends. One aunt had a doctor call, and he told Doe he could cure MS with a shock treatment. A friend sent a sales lady over who could cure MS with a corset. Her mother sent a large box of several different kinds of vitamins. A lady in a store told her vitamins would cure MS. Over the years we have heard of and researched many so-called "cures" for MS.
In 1972 I was promoted and transferred to Detroit, Michigan. The MS was progressing slowly. Going shopping or visiting had become a chore and Doe tired easily. By 1976 Doe could no longer walk more then a few feet and had to start using a wheelchair. In 1978 we had to sell our house and move into a handicap-equipped apartment. During this time Doe was also hospitalized twice for treatment with a steroid called ACTH.
In 1979 Doe began to experience severe pain on the left side of her face. She was diagnosed with Trigeminal Neuralgia (tic douloureux). Several drugs including narcotics were tried but nothing helped. She also tried a dental appliance to align her jaw; this too did not help so she was hospitalized for surgery to deaden the facial nerves on the left side of her face.
The MS continued to progress and Doe was again hospitalized in 1983. A new treatment using ACTH and chemotherapy was tried. This also failed to bring any relief.
By the early winter 1989 Doe could no longer swallow food or liquid and was again hospitalized. ACTH treatment was started again, but after a week no improvement in swallowing was seen. The only option was the installation of a feeding tube. After three weeks of treatment my little Doe (once a 125lbs now 170lbs) was discharged and sent home. The doctor ordered a Hoyer Lift, an airway suctioning machine and a hospital bed.
Doe now required full time care. My insurance would not cover home care and we did not qualify for Medicaid. I worked out a schedule with my company so I could go home every two hours to check on her. This worked out OK but meant I had to do a lot of work at home and go to the office on weekends to keep up with my assignments.
Doe's requirements for care kept increasing. In the spring of 1992 I took early retirement. By 1994 the stress of taking care of Doe for so many years caught up with me. I slipped in to a state of depression and began to be verbally and physically abusive to Doe. The feelings of anger, frustration, trapped, loss of self and rage were taking me over. One day in a fit of anger I saw, for the first time, fear in Doe's eyes. I knew right then I needed help and called my doctor.
As I sat talking to the doctor tears began to run down my face. I felt like a total failure. The doctor assured me I was not a failure - I had just overloaded my mind and body. He put me on an anti-depression medication, set up some consulting and strongly suggested I get into something at home to relieve the stress.
I tried woodworking, model making, reading and drawing, but nothing seemed to help. One day I saw a computer system on sale and thought "what the heck, nothing else is working - give a computer a try". After experiencing the frustration on getting the computer system working, I began to look at the entire wonderful world of things I could do. I could write, play games, manage my checking account, and even set up a medical log to track Doe's condition from day to day. But best of all I found people just like me in chat rooms and web sites that took me all over the world.
I soon found out I was not the only caregiver that got angry, frustrated, felt trapped, or experienced rage. I also found, like me, many caregivers experiencing loss of friends and family, not because we had changed but because they could not handle our new circumstances. I found the Why Me / Why Us feeling is almost universal among caregivers. None of us asked to be in this position-we just arrived.
I visit many caregiver chats. Most of the time I just park in the back of the room and listen and learn. The range of emotions we all go through each and every day amazes me. Where else in our society are the people with so little training forced to make so many decisions on the care and well being of a loved one? We get little help from family or friends and most of the professionals either talk above our head in giving instruction or just have no conception of the limitations of the care we must provide at home.
The most upsetting hidden emotion I encounter in the chats is that of Shame. I too have experienced this emotion and it was eating at my soul. I have learned to get and keep most of my emotions under control with medications when needed or a deep search within myself. In my heart I have come to the conclusion I have no reason to feel Shame. I am doing the best I can with what skills I have and when my emotions begin to get out of hand I seek whatever help I need. No caregiver should ever feel Shame if they are doing the best they can.
Many times I have been asked, "How Do You Cope". I don't know how to answer this. Before I got my computer and my back was up against the wall a deep lonely feeling would set in. Now when I'm stressed out I turn on my computer, look at my buddy list and know I am not alone. If I need to talk someone will be there.
I asked Dan if he was wearing a racing car driver suit in one of his photos. Here was his response.
"Yes, that is a well-worn driving suit. After Doe, car racing was my second passion. I grew up in a racing family; my Dad began racing motorcycles and cars in the late 20s. I began my racing career in the mid-50s. I have raced on dirt and paved ovals and road courses. I drove midgets, sport cars and stock cars. I was not a great driver but I was good.
"Through the years Doe was my biggest supporter in racing, she never missed a race and no matter how good or bad a race went she was there to cheer me on. "
DAN HANLEY AKA DMHANLEY
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