by Elaine Miller
While I was working at the nursing home with Jean, we took care of a patient who was close to Maryís age, had been in a motorcycle accident and now was paralyzed down the left side of his body and was aphasic. (could not speak.) His mother was a woman much like I am in personality. She would come in and we would talk. She told me we needed to come to head injury support group. She told me it was wonderful and she had been active in it for years. The hospitals in the area were active in it. Psychologists and social workers that worked with head injury patients and their families came all the time. Two psychologists ran the group. Mary was living with us at the time. It was about eighteen years after the accident. I decided to go and I asked Mary to go. Eventually Marie went part of the time.
We met other people who had children or spouses who had been head injured. Mary looked and talked normal in comparison to many of the survivors there. Whenever new people came they went around with a brief story about themselves and the survivors talked too if they were able. I looked about me and felt that I really had been blessed that things had not been worse for all of us.
The people with the very most heartache were the spouses of the survivors. One wife said that she didnít have a companion any more as her husband was so mentally damaged that she felt like he was another child to her. Many people cried every week. One man had four children and his wife was so bad that she was confined in a wheelchair and in a nursing home. The husband and wife were young and the children were young. His wife could make noises and cry, but most of her speech was garbled and unintelligible. It was heart rending. One single mother had a young boy in his twenties who was terrible to control, but was too damaged to be on his own. She sometimes had to wrestle him to the ground and sit on him until he calmed down from one of his outbursts. He was a good sized well-built man. How long could she keep that up? One older couple had devoted their lives to caring for their daughter in her late thirties, for over twenty years. She was in a wheelchair and could talk, but her speech was difficult to understand, and she had difficulty with coordination. My heart went out to these people. The older couple were always smiling and had a deep seated faith. They just accepted everything the way it was and were grateful to God for letting them have and care for their girl. I admired them. They were laid back and took everything in stride.
On the other hand, I donít think I could have sacrificed my entire life like they had for their child. They had other children and grandchildren. They were unable to give them the attention that they would have liked. I know that I would have not been that accepting about it. Was I selfish? I donít know.
Some of the programs were very good. We had quite an awakening in listening to those doctors talk. We found out that all those behaviors that Mary had demonstrated over the years were normal for head injured people. Mary ate and ate without stopping. She drank one soda after another all day long. It she drank beer she couldnít stop. She had no self control. She was promiscuous. She was compulsive and redundant. She got on a subject and never stopped. She harassed people when she wanted something. She was obsessed with things. She had mood swings and you never knew when something would trigger her into a rage. When she was in a rage she could not stop herself and no one else could stop her. She would become hysterical and upset easily. She did not do well in crowds because it made her brain scramble. She was very bad in a crisis. She thought things and in a split second the thought was real and had happened. She could follow only one direction at a time, or her brain scrambled. She made inappropriate and off the wall remarks in general conversation with others. Her brain scrambled in crowds. When she did a task like brushing her teeth, she would stand and brush in one spot for much longer than necessary. The list was endless.
I would sit and look at those doctors and other health care professionals like myself and be full of rage. Where the hell were all of you when I needed you? Now, there are counselors devoted strictly to the head injured and their families. There are whole rehab sections in the hospital for rehabilitating the patients. The counselors encourage the families to come to counseling for a long period of time. They were right there for the families almost the minute the patient was brought into emergency. Not any of us had had any of that. I really resented it. To this day my other children carry around excess baggage of devastating proportions. They have hideous scars that have never healed and maybe never will. There is monumental pain and suffering. Mary carries around the hurt of people rejecting her, especially her own family. Marie and I have been her "rock." Even Don lost patience with her. There were times that I wanted her out of my life, but I couldnít do it. She was still my child.
Once the hospital that I had worked for, and where Mary was a patient for three months, asked for caregivers and survivors to come for a meeting. They would serve us all supper (pizza), and they wanted input as to what we would like or did like in the hospitals and the community. They wanted to know how they could help support head injured and their families. Marie, Mary, and I went to the meeting. I was full of anger and I told them that my daughter had been there in their hospital and that she had received nothing in the way of rehab. I told them I had rehabilitated her myself with the help of God. The young social worker said that was wonderful that I had done that. She missed the whole point. I was not there for a pat on the back. I had done what I had to do for our surviving. She did go on to say it was unfortunate they didnít know about surviving head injury like they do today. I think I could have appreciated the meeting and their wanting to help the community of survivors and caregivers if I had not been so full of rage.
Mary was, indeed, one of the first people ever saved with that devastating an injury. That still did not erase the anger I bore or the resentments my children bore. You could call me a wounded pioneer. Marie felt that I had put her on the back burner from the day of the accident on. Sheíd lost her childhood. She had lost a part of me. Later she would tell me over and over that I couldnít be a full time grandma to her kids either because of Maryís child. Seth, my son was full of anger and rage. The pain of the wreck had shattered and affected everyone. Later we were parents to Sean, and he lost a grandma and grandfather, due to our parenting. We had to be parents to him rather than grandparents.
There would be a little time for sharing at the meetings. Everyone was to discuss how the month had gone. Marie and I would become frustrated because there were no topics such as the steps or slogans that were discussed as in Al-Anon. For instance the second step was "came to believe a higher power greater than ourselves could restore us to sanity." They needed a program such as that that pertained to dealing with head injury. The third step was the hardest to accomplish for many others and me. It is Make a decision to turn our will and our lives over to the care of God as we understood him. There were times I would sit and pray for God to take my problem and help, not being able to release the problem to Him. I would have to sit with my fingers touching my shoulders and lower my hands and arms; palms open and pretend I was thrusting the problem up to God to take. I would sit and do that over and over until I could release the problem for a time to Him. Caregivers in the head injury group could benefit from such a program.
They needed something to go home and ponder what was positive for themselves that could make life a little easier. I desperately wanted to feel better too. Instead most people dealt on the negative things. I felt negative when I went to the meetings and it was probably because I carried around such anger and rage. Others felt that it helped them a lot. It was hard for me to allow other people to be where they were in the development of their lives.
The time I felt the most frustration and pain was when some new family or person came into the group and had such high hopes that their child/spouse etc. would just come out of it and be as before. One of the things that did, was bring back all the shattered hopes and dreams that I had had like that. I wanted to scream at them, "Itís never going to be the same! You might as well get that through your heads now!" At those times I would not talk because I didnít want to devastate someone else and I wanted to let him or her cling to the little shred of hope that they possessed. Many times I had to hold back tears until the lump hurt in my throat, or Iíd get up and go to the restroom.
One evening one of the doctors came in and brought an article from one of her medical magazines. It was a well written article about research that had been done in regard to traits and relearning skills of head injured people. I took it home to read. My eyes hit on one paragraph. It said that these people do not learn from their mistakes, especially social mistakes. It also said that brain injured people stay at the same emotional level they were at the time of the accident. I was stunned. It was as if all my hopes had been blasted away in one fell swoop. I cried. I cried and cried. I did my chores when I was alone and cried. I went up to the sewing room to sew and cried. I cried every minute that I was alone for four days. I was devastated. Up until that point I had hoped that she would get better and better as time went alongÖmaybe not normal, but better. I figured she would mature. I hid all my crying and pain from Don. I didnít want to upset him.
Another evening at group I brought up the fact that she had never had a counselor who really understood head injury and they had always given up on her. I told them I had sat back for years and watched that. I said that surely she could find a little job that she could do alone and do it well. One of the doctors there said he would take her for a patient. He worked for the hospital and they took a medical card. I could not believe my ears. Mary was excited too. Her current counselor had accepted another job out of town. Things were arranged and she started going to see him. Part of the time he also wanted to see me. I went. Things were looking up.
This doctor decided that he could use Mary as a volunteer helping his secretary. I was elated and so was she. His secretary understood head injured people and was very patient. Mary worked well for her. Mary went once a week and did filing. She did other odd jobs too. She was good in that office. At times they were so backlogged, she would come in extra and work. She thrived on it. Volunteering stopped when the counselor moved his office to another location. She continued to see the counselor, but he didnít have the secretary any more. She had worked with his secretary for about a year.
One previous counselor had hooked her up with an organization that had found a couple jobs where she would answer the phone and switch the calls to the appropriate people. One was at an agricultural lab here. Since her mind scrambled and became confused with more than one thing at a time, she lasted one day at each job and then was finished. It was a demoralizing experience that she really could not help. She was so disappointed. I felt so badly for her. They had then sent her over to the work shop for mentally ill and retarded people. She lasted a week or so there. It was certainly not the suitable place for her. She did not fit in there. She was not mentally ill or retarded.
My ex was a board member of the city zoo and he managed to get them to give her a volunteer job. She enjoyed it and went several times a week. She told people coming through where to find certain animals. She started garbage picking and taking empty soda cans to recycle and they didnít like it. She then did not get along with a couple of people who worked there, so her volunteering ended. She was very disappointed and didnít see that she had done anything to cause her dismissal.
Mary did volunteer while she was in college and afterwards for a congressman with his campaign. She called his office, and they recorded what she had to say to play for the congress about the difficulty of people seeking employment after they have had head injuries. Head injury groups were lobbying for new laws to help head injured people.
Maryís new counselor lasted a couple years with her, and then he had personal problems and moved. I thought that he had helped her some. One thing he had done was to help with her self worth and self esteem when he got her to volunteer for him.
Later the psychologists resigned from leading the support group. Their loads were too demanding in their practice. They elected a president. The strong Mom of the boy in the nursing home became the president. They started a group news letter of positive things and events. They started having social gatherings some place extra once a month. People were asked to take turns and plan an event. When it was our turn we went to a restaurant one Saturday morning and had breakfast. I remember I had a Belgium waffle with fruit on it. The weather was bad that day, but a few brave souls came anyway.
They started having some very interesting programs. A Peoria attorney started coming and became their legal advisor. People could call him for legal advice too. He gave several interesting programs pertaining to aspects of the law regarding things to do with the survivors. A woman from the state head injured group came and spoke a couple times. They would have potluck once a month at the meeting. I enjoyed going more. They tried to dwell on some of the positive aspects of peoplesí lives. At the end of the program there were refreshments that we all took turns bringing.
The group would split into two sections, one the survivors with a counselor to lead them and one the caregivers. New members would be there and we would try to lend them support. They had started trying to think of a key topic to discuss every time. I had hammered at the psychologists about that and how much that would benefit people. The meetings improved. Mary looked forward to the meetings. She had made a few friends and enjoyed seeing them there once a month.
They sold popcorn at a fun fest once a year and sold it to the members during the year. In the summer they sponsored a certain amount of survivors to go to a camp in Bloomington, Ill. for a week. Even the ones in wheelchairs were going. Mary went two years in a row and loved every minute of it. I got a little break.
They started to set goals. They wanted to get the state senate to pass laws to benefit the survivors. For instance, no place around here has a day care devoted to giving the survivors a place to come under supervision and socialize. No caregiver had a break and the day care would give them one. Their goal also was to get the rest of the communities educated about the special needs of head injured people. The day care still has not come to pass.
I contacted one of our customers who came to the shop and asked her to do a story on life after head injury. I told her about Mary. She did a story and featured Mary. They came and took a picture of Mary with her dog Barney. It was a marvelous article and covered one page on the back of the paper. I had the reporter talk to the two doctors and let them have input into positive and negative aspects with coping with brain injured people. Mary was really thrilled and the article was very positive for her.
I made a few friends that I enjoyed talking to at the meetings. They at least understood some of my problems with Mary. I liked the programs and felt that I gained some valuable information. Mary always enjoyed herself at the meetings. I think she liked the socializing best. During the meetings she would be up traipsing in and out to the coke machine or the rest room. Sometimes I would get really aggravated with her about it. She didnít pay real close attention to the programs unless something really sparked her interest. She was still very bright and intelligent. She would at times come up with some exceptionally astute comments and get a lot of approval from the group. One year at the Christmas banquet she was honored as the survivor of the year. She was positively thrilled. Don went with us that time (under duress), as he didnít like stuff like that. One time her counselor had a cookout for the entire group at his house. Don went then too. Life had become slightly easier to manage.