I am by no means alone, and have many friends and family that support me, but sometimes I am still very much alone. It happens mostly at night when I do my advocacy work for so many that suffer from Huntington’s and Juvenile Huntington’s disease.
Prior to a life encompassed by Huntington’s disease, I used to have a very full and active life, and a very busy work schedule. I had a professional job for thirty-eight years, in fact, it was a highly stressful job. Then my daughter Erin got sick and could no longer be alone. I made the decision to leave my job because I was under so much stress – trying to work and worry about Erin being home alone. I worked an hour away from home, so if something happened, I could not be there right away.
I am a full-time caregiver now, and work from home. I am president of WeHaveAFace.org Canada, for Huntington’s and Juvenile Huntington’s Disease, and I also run a business. After working my whole life, I could not just sit at home and do nothing, so I decided I would dedicate my life to help others. I began to educate others, and to fundraise. Simply, people needed to understand this disease. I started “The Pie in the Face” challenge for Huntington’s, which raised thousands of dollars and the challenge went around the globe. I was making a difference – I was teaching. It was difficult in the beginning because I live in a small community here in Brockville, and people did not know about this disease. Sadly, they never heard of it.
I was determined when I took Erin out into the community. People would not only stare, but I made it my mission that they would learn! It took time, but now Erin is loved by her community. No one shuns her, and no one walks away! Community members greet her and smile and wave to her when they see her. What I’ve learned and witnessed is that many families with Huntington’s kept it a secret, but are now coming forth.
I remember when Erin’s Dad used to walk down the street. People would tell me that he was drunk, but I had to explain that he was suffering with Huntington’s. I educated them and requested their help if they saw him in need while in the community.
This disease is the worst disease known to mankind, and when we find a cure it will cure so many other diseases like ALS, Dementia, Parkinson’s and so many more. I say when because I believe with all my heart there will be cure!
I have lost people in my life to this disease, and I have two children that are positive. One with JHD, and one that will develop HD in the future. I am a full-time caregiver and I research as much as I can every night when I am free to work – while Erin sleeps. I have shown videos of CBD oil and how it helps. The videos have gone viral and helped so many. I will continue to fight and research for all that need help, and be there for as many as I can. However, I can only tell you what I do to improve and extend my daughter’s life.
With this disease, you are very much alone. You lose friends, especially the person that suffers. Friends don’t want to be around “it” or just don’t know how to accept “it.” They come and visit occasionally and I understand that. But, when they visit they see the good. They never see the horrible experiences. Friends were there when we were experiencing all the joys of life. But as our loved one get sicker and sicker, friends are rare. Our loved ones with HD/JHD end up depending on us for everything. You feed them, you bath them, you take them to the bathroom – they are completely dependent on you for everything. You give them their meds and research every one of them. You take them to their appointments and talk to all the doctors. You have now become “the professional” in the field of Huntington’s disease. You teach the doctors regarding what works and what does not. You situate all the medical aids put in your home which makes life a bit easier. You have ramps installed so you can get them outside in their wheelchair. You have monitors on them at night so you can watch them sleep and monitor for potential seizures.
Then, friends come and visit and see the person with HD/JHD sitting comfortably in their chair, happy and watching television. Friends do not see the preparation…the difficult moments leading up to their visit. Friends say, “she looks like she is doing well today.” They stay for a little bit, maybe bring them a treat, and then they leave.
Visits from friends is wonderful, as I can no longer leave my home as often as I would like. It gives me a little break and some adult time to talk. But, the reality is that they see Erin at her best. They don’t see the before and after. They can never really understand how hard it is unless they live it every day.
For families and caregivers that go through this, I know you understand completely. I love and appreciate everyone who try to help and support, but truly it is only the immediate family and caregivers that will ever know the emotional side of this disease. If I could bring you into my home for a twenty-four-hour period, you would see the reality of this disease. We need the world to know about this disease, and we need to educate so many who choose to hide away!
I am luckier than most. I have a daughter that suffers from JHD, but she is unlike others. Erin is amazing; she always smiles and never complains. Erin is not the norm, as most that suffer are not like her. Too many have pain and daily seizures. Too many cannot eat without choking and must resort to a feeding tube. They can’t communicate and suffer from dystonia and so much more.
I guess I can say as horrible as this disease is, I got lucky!
Not so lucky!
Then the sun goes down and I put Erin to bed. I setup my camera and begin to work, research, and reach out to others that are alone. Their families have walked away or they are left in a nursing home. Then there are the caregivers who are looking after a loved one with HD/JHD. They watch this disease destroy their loved one…they rage out of control and the caregiver fears for their own safety. Caregivers have young children. The caregivers are lost, scared, and don’t know what to do. However, they know that they must protect their children and themselves. Then there is the battle for their children and the school systems. Caregivers fight every day for their children in schools to try and get help and to be heard. This is an ongoing battle which must be resolved.
Being a caregiver, your life is completely turned upside-down, but the love you have in your heart is real. But, you fight, and continue to fight some more.
Finally, when we, the caregivers, are so tired, we sleep. Sadly, we know through exhaustion that we will wake to a new day. You are thankful that your loved one is still alive, and you start all over again. You get up, you smile, and you say to yourself, “Today is going to be a better day!”
Most of all you have HOPE!
HOPE IS THE ONLY THING STRONGER THAN FEAR!