An interview with Linda Gibson, mother to Marcie, who was diagnosed with ALS in 1994.
November 2003
Marcie, now 33 years old, was diagnosed with ALS in January of 1994 when she was only 23 years old. We feel the disease started affecting her muscles in the fall of 1992 when she was 21 years old.
How has your relationship with Marcie changed since her diagnosis of ALS?
Our lives have been changed forever. She was once a very independent person and now she must rely on someone, or me for her every need.
The lives of all in our family have been changed forever. We were all very independent people but now in many ways we work as one. Marcie does not go anywhere without me or her dad. I must do everything for her. I am her primary caregiver. Her dad helps in the evening and on the weekends, but there are many things that only I can do for her.
My life must work around her. I cannot just "run to the store or the mall." Marcie must be willing to go with me. If she does not want to go, then I must wait till her Dad gets home from work and I go at night.
However, her neck is so weak now going anywhere is a challenge. We have a special headrest attached to the wheelchair that she uses in the car to hold her head. She does not like wearing it in public so that really limits us going anywhere. She can still hold her head up but the slightest movement makes her head fall forward or backwards. But we manage - you learn all kinds of little tricks when you really want to do things - like going to the mall and keeping her headrest on. We take off what is called the "halo" that holds her head to the headrest and I hold her ponytail at the back of the top of the headrest. No one realizes I am holding her head upright. I really want Marcie to get out of the house whenever she wants to.
Most days go very smoothly yet others days are very upsetting when I cannot do things just the way she wants them done.
She wants me to continue on with my life yet I must see to her needs first above everything else. My life is more organized and centered around her now, and less about what I want to do. I am learning to be a homebody rather than working outside my home now.
Most days go much smoother than a few years ago. I have learned more about just how she wants things done in her room and I have learned more about putting her makeup on her and fixing her hair the way she likes it. I would say we get along much better now than in years before. We have both learned how I can help her better.
What are the challenges of caring for a child with ALS?
NEVER HAVING TIME FOR "ME" ANYMORE. My time is Marcie's time first.
This is still so TRUE! She must come first always - she will always come first. Oh, to just start a project and see it to the end - but this will not happen until she gets well. When Marcie calls I jump to her call - doing what is needed - scratch her nose - change television channels - move her legs or arms - get her a drink - whatever she needs. I stop what I am doing myself and do for her. But that is how I want it. She will always come first. Now, if I'm in the middle of something I'll ask her if it can wait a minute. If it can wait, I finish what I am doing if I can get it done in a minute or two, and then I go to her.
Not having the freedom of leaving the house without first making arrangements for someone to stay with Marcie.
Now I must have someone in the room with Marcie when I leave, not just in the house. I just feel that is a MUST. If her head were to fall, which hardly ever happens but it has happened, she is not able to call for help so on the very few occasions that I do leave I have a friend of hers come over and they visit in Marcie's room. I limit my time away to two hours and not more than 15 or 20 minutes away from the house. Her friends have instructions if any kind of problem comes up to call 911 first and then call me. I have this printed in big red letters by the phone in the hall - about five feet from Marcie's room. When I am home I have a baby monitor in every room of my house - even in the garage. And I am always checking on her during the day and night.
I am no longer working - it was just too hard to continue even a part time job. Getting up at 5:00 a.m. to get ready for the day and getting Marcie up at 7:15 a.m. for the day and for me to be out of the house by 8:30 a.m. - it was just too hard on both of us. So after 25 years of teaching, the last 20 of those years at the same school, I had to stop in May of 2003. Last year teaching and caring for Marcie was the hardest of any of the five years, now that I have to do everything for her and try to teach at the same time. This year is running so much more smoothly for both of us. I think we are enjoying each other more.
I still have sitters come in, but only once a week for two hours a day. Each month I make and send out a new calendar with a schedule for that month as to who comes on what day and at what time. This is starting the second year with this team effort.
Your life is no longer you own. I never resent caring for Marcie, but it should not be this way. She should have her own house, fixed just the way she wants it fixed. I do not blame God and I don't ask "WHY" - but I just don't understand. We do trust in Him and know for some reason this illness is in His plan for our family.
I try to anticipate the things Marcie might need "tomorrow" in ways of equipment. This is something Marcie does not want to think or talk about. I try to keep a list of ideas ready, if only in my head, if and when we need them.
How has healthcare changed through the course of Marcie's battle with ALS?
Since Marcie was still in college when she was diagnosed, she was covered on her Dad's insurance. Unfortunately, that coverage was for only 4 months as she graduated college 4 months after the diagnosis. Cobra took over for 3 years, and in the meantime we applied for Medicaid, which took over after Cobra. Just this past summer Medicare took over after a 24-month waiting period. So far we are OK. Marcie has not needed very much equipment.
Your family has been strong advocates of ALS awareness and continue to stay involved. What is your motivation?
The more people that know about ALS the more awareness for this disease and the more money for research we will get. We need more government involvement to get more money to find a cure for ALS. It must be stopped, and soon, before it destroys more young lives like Marcie. Her life has been stolen from her. She is "stuck between her parents" as she once said.
Marcie does not go to support groups but I occasionally do. No one is her age. She does not go to a clinic either but for once a year. The doctors only tell her she will get worse and she does not want to hear this. She does not go to any function where she might see another ALS person. BUT SHE DOES speak out for ALS when others cannot speak. She does newspaper articles and magazine articles about ALS. She does TV promotion for or ALS fundraisers. This is her way of telling people about ALS and maybe this is one way she deals with her illness. When someone hears about a person as young as 23 years old having ALS, they may come closer to listening & help raise money to find a cure for this disease. She allows me to speak out as often as I can for ALS. I will do anything I can to let people know about ALS.
I have helped with nearly all the "Walk to D'Feet ALS" events in North Texas, chairing the Waco Walk to D'Feet for the second year now. I have even done PSA's and an interview for a television show in Wacopromoting the Waco Walk to D'Feet ALS. My friends and family have helped me tremendously with the Waco Walk. Even my high school class had a team for two years and some of my classmates have been committee members, walkers and sponsors for the Walk.
In what way(s) has promoting ALS awareness helped Marcie?
Letting Marcie know we are not afraid to talk about ALS. She knows I will talk to anyone at anytime about ALS. If I think just one more person will learn about this awful disease, I tell them about it. The more people that know about ALS the more money we will get for research to find an end to ALS.
Marcie drinks a lot of fresh carrot juice. When people see me with sixty pounds of carrots in my basket they often ask, "do you have a rabbit or a horse?" I proceed to take out the Lou Gehrig baseball card, which I never leave home without. I ask them if they know who Lou Gehrig was, and whatever they answer, I tell them my daughter is paralyzed from ALS and drinks fifty ounces of carrot juice a day (yes, she does!) and I give them the card. Our chapter information is on the back - North Texas Chapter of The ALS Association. I tell them I hope they never need us but if they do they can call our chapter. Several ask me questions about ALS and I freely tell them what they ask - and as I leave them I say, "And now you know a little about ALS."
I am not afraid to talk about her illness to anyone.
I even run people out of handicap parking places if they do not have a placard or the handicap plates on their van or car. I even call 911 and they are given a ticket if they do not move their car!
What does the word "Caregiver" mean to you and how has it changed you life?
Caregiver means… always being on call 24 hours a day. Either at home or away. When I am away from her I have my cell phone in my pocket and turned on at all times. When I am at home I have the monitor with me so I can hear when Marcie calls for me.
It means being:
A nurse (bathing and dressing and keeping up with medicines, crushing pills and mixing in applesauce)
A pharmacist (keeping track of when to order medication)
A housekeeper
A taxi driver (It is getting harder and harder to be on time. We must tell ourselves we want to leave 15 minutes before we really need to leave - something always takes longer than you think it is going to take - either getting her ready or getting me ready.)
A cook: both finding things she will eat and thinking of things I can puree for her. Marcie no longer eats solid food. I puree everything for her so she can drink it with a straw. I can even puree enchiladas and refried beans. You can puree just about anything if you try - add water to liquefy what you are blending.
A laundry person. This is a never-ending job.
A secretary (holding the phone or putting the head set on Marcie's head and listening for when she is finished talking so I can disconnect the phone)
ALL THIS STILL ADDS UP TO BEING A MOM!
AND THAT IS WHAT I AM!
I would not change that except for the fact that she did not have ALS!
I am so thankful I was able to quit my job and stay at home to take care of Marcie and still know we can get by financially. My husband has been at the same place since 1966 - so if he needs to stay home a little longer in the mornings he can - or come home early if I have a meeting he can do that also. If I have to call him home if I just don't have the strength to lift her that day he can come home - lift her and go back to work - or if I am just having a very hard day he can stay home and help take care of her. We are thankful his job is so flexible.
As a mother, what advice would you give to other parents caring for a child living with ALS?
Remembering your "child" is an adult, even if I have to feed and bath her, clean her room and take care of her belongings. I MUST respect her wishes - even if you know it is not in her best interest. Sometimes I do know better since I do see a lot on the net and talk to others with this disease but I must respect her wishes today and buy different equipment or help aids tomorrow.
Adults look at tomorrow and buy for tomorrow where Marcie only will buy for today. So we will buy something else tomorrow. The money will come from somewhere. I don't want to discourage her today. I must give her HOPE FOR TOMORROW!
Marcie needs a new wheelchair so badly but she has not given up on the idea of walking again so she refuses to get a new chair. This is one thing I cannot get ahead of time for her since she needs to be measured for it. It is very frustrating to me that she will not go ahead and get this ordered even if it just sits in the other room. It would help me so much but she refuses - so I just wait and respect her wishes - even knowing in my mind - once she decides it will take another three months to get a new chair - she knows this but…not yet.
But I MUST remember this hard headedness of hers has kept her alive for more than nine years with a death sentence of ALS. I am so thankful for her hard headedness - she may just be the one to win this battle over ALS. And even if that means days are harder for me in taking care of her that is okay - to see her walk again, move her arms, just for her head to not fall when someone gives her a hug. I must stand very close to her when she is around friends. For those she does not see very often always hug her. I must be right there to catch her head and balance it back on her neck - trying to without drawing much attention to what I am doing not to embarrass the person giving her the hug.
We know and have known from the beginning of the illness that God is in control. We feel maybe He is using Marcie and our family to show our faith in Him. Our prayer is "we ask God to reveal to the research doctors the cure for ALS." And to keep Marcie strong while waiting for that cure. Maybe God will use her to show the cure for ALS. With her faith in God and by God helping the doctors find a cure she and others will be healed of ALS soon.
