I decided to write this post for many reasons on this subject. When you think of someone who is a caregiver what comes to your mind? For most, I can only guess it’s a nurse or some other medical professional that is hired from a company that comes to your house to care for mostly elderly individuals. I am not going to say you are wrong, because you’re not, but there is so much more in Caregiving.
My name is Lynne Robitaille and I am a Caregiver for my daughter Lauren. She is a 25 years old women who had a heart transplant one year ago and also has a rare muscle disease called Lainge Distal Myopathy. Lauren’s muscle disease is a form of Muscular Dystrophy, which only effect her distal muscles being her ankles, hands, neck. She has weakness in those areas. Lauren also has scolosis.
This is my daughter Lauren. The picture was taken in Punta Cana, we took a family vacation when Lauren got the ok to travel this past February. A trip we promised her when she was in the hospital. It gave her something special to look forward to. When you are recovering from such a life changing surgery, the Dr.’s and nurse’s heal the body, so we needed to work on her emotional state of mind. Giving her the motivation to get to the Island’s was ours.
When someone becomes a Caregiver, is could be for anyone that is in need. When that person is your child, you would never in your mind consider yourself as their Caregiver. Your mom. You have always taken care of your child since birth and will do forever. But then, I was approached when we were ready to the hospital this question. “Who is going to be Lauren’s Caregiver”?. I remember just looking at the Dr’s and the social worker, with this look on my face, excuse me, what did they just ask me. Who? who?
Lauren had undergone so much in hospital that even when she was going to be discharged she would need assistance is her medical condition and every day living skills. Medically, she came home with a trac that was not removed yet and a feeding tube she still needed. On top of these obstacles, Lauren’s blood sugar had to be checked twice a day, medication had to be administered, feeding tube had to be set up in the evenings and she needed to be put on a ventilator with her trac in the evening when she slept.
That was the medical part, now everyday living is a different story. Help was needed in all aspect of just daily living. Up and down stairs, laundry, preparing meals, personal hygiene, transportation, and anything else she needed help with in daily living.
So getting back to when I was approached as to whom is going to be Lauren’s Caregiver, the hospital told me that they could not discharge her if they didn’t have a name. They wanted to contact resources here in Chicopee to have someone come to our house to help with Lauren. I flat-out told them NO, I was going to be her Caregiver. Living with her in the hospital, I was trained in all the aspect of her medical conditions and being her mother I had experience in taking care of her with daily living. So that is when I became Lauren’s Caregiver.
I found an organization here in Massachusetts that helps Caregivers. It is called Caregiver Homes of Massachusetts. I had to fill out an application to be accepted into this program. Then they come out to your house to asse you and the patient. If approved, me being Lauren’s Caregiver, I can get compensated for Lauren care. You are given a Case Management team Registered Nurse and Care Manager. This professional team visits us every month. In the beginning it was a great piece of mind for me with all the medical care she needed. I didn’t feel so alone. Now as time has gone by, we are reaching our one year, it is only daily living skills Lauren still needs help with. Moving forward.
I looked up the definition of a Caregiver, this is what it stated:
A caregiver or carer is an unpaid or paid person who helps another individual with an impairment with his or her activities of daily living. Any person with a health impairment might use caregiving services to address their difficulties. Caregiving is most commonly used to address impairments related to old age, disability, a disease, or a mental disorder.
Typical duties of a caregiver might include taking care of someone who has a chronic illness or disease; managing medications or talk to doctors and nurses on someone’s behalf; helping to bathe or dress someone who is frail or disabled; or taking care of household chores, meals, or bills for someone who cannot do these things alone.
With an increasingly aging population in all developed societies, the role of caregiver has been increasingly recognized as an important one, both functionally and economically.
Now, another reason I wanted to write this post is, I believe people need to understand what a Caregiver is.
It is a full-time job. I was approached and asked when or if I was going to get a real job now that Lauren is getting better. I have heard that question before but just decided to ignore it. My thoughts were they don’t know how much effort goes into taking care of someone 24/7. Being a Caregiver is a full-time job. People rely on you. There is no sick days. leaving early, punching out or saying “thank god the week-end is here”. It is a real job, with low or no pay.
If you know someone who is a Caregiver, please give them the recognition they deserve. Taking care of another person especially an adult who is set in their ways is not easy.
Lynne Robitaille – Caregiver