I refused to put Katrina in a home
Submitted by: Allen, Holland
I am the father and only caregiver of my daughter Katrina. My wife left when Katrina was two years old as I refused to put Katrina in a home. Katrina was born early with cerebral palsy (CP). She is 100% disabled and blind. She has had so many seizures and operations. She is in a wheelchair if we go outside the house.
Katrina is now 31 years old. She continues to have seizures about every 60 days. It’s so hard to see and to have no control with no solutions. Doctors just don’t seem to care and say that Katrina will always have them. They just tell me the same thing every check up. [It is] so scary seeing her have seizures. It breaks my heart and she suffers and has [to take] diazepam to stop them. This has been going on her whole life. It’s very hard to have your loved one almost die every 6 weeks year after year. I beg the doctors over and over to change her meds, as the meds make her stomach hurt so much. Every day I have to hear her crying just after giving her her daily meds, twice a day. I spend one to two hours a day after giving her her daily enema holding her on the toilet to try and get her to poop. She bites herself and me if I am not careful. And we just have to try it again later.
I had Katrina in daycare so I could work to support us. But it was so hard working as an electrical worker/engineer 50 hours a week and paying over $500 a week for poor daycare. So after 27 years I gave up my good-paying job to stay home and only care for Katrina. I was 57. Now I am 61 and we live off of my 401k savings.
It’s very hard to go anywhere as she has fits, but it is very hard to stay home all the time, not talking to anyone for days but back and forth with Katrina trying to make her learn a new word or sound. Katrina has her good days, also. I try every day to do something outside the house with Katrina if it is nice outside. Most of the time we just go for a five minute drive and back home. I made the house nice for Katrina with large openings for going in and out of each room and a nice ramp and cement driveway and walkways so we can take walks outside.
Katrina's health has improved since I quit working. This is a good blessing. I work every day with her doing stretches and holding her standing. She has weak bones from all her meds she has to have. I can’t leave Katrina alone for more than a few minutes as she will fall over. She can’t sit up by herself and she can hurt herself. Sometimes she stops breathing so you have to be close to her and make sure she is ok.
I pray every day and night for Katrina. We have it good I know. It’s hard, though. Being a full time caregiver gives me a greater strength. A different kind of strength—not physical strength, but mental strength. I will continue to give Katrina the best care I possibly can. Katrina is my whole life. I live every day for her. I love her more than anything. Anything. People, including family and friends, just don’t understand so we just stay to ourselves and enjoy every moment we have. They don’t understand why we can’t go to parties and outings. Doctors are so disconnected in telling me to put her in a home. They don’t understand what it takes to see a loved one that can’t speak or defend themselves that needs so much put into a home. To me that’s sick. I will care for her until I die. Unless there was real better care.
Our medical system is so broken in Holland. It took me over three years to get her a wheelchair from Mary Free Bed. Then I went to get it and it was all disassembled and they couldn’t figure out how to put it together. I took it home in pieces. I made two old chairs with the new one work. It is also so hard to get any information on getting life insurance for her.
Anyway, this is a snap shot of our life. I am so lucky to have Katrina as she has shown me what real love is.