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Perhaps one of the greatest challenges we face in life is knowing when to give help, and when to take it. If you are living with a chronic illness, then creating an environment in which you have the right mix of independence and assistance can be the key to your happiness and your health. However, achieving that balance and learning how to ask for help may mean opening your eyes to new ways of living. Many people experience anger, frustration, depression and a fear that they will lose their independence when diagnosed with Alpha-1. The answer is to work through these emotions. Often the first and toughest step is accepting the fact that you or your loved one does have a chronic illness.
What it means to be a Caregiver - Nobody chooses to be a family caregiver. It is a role that comes with many mixed emotions anger, fear, guilt, and frustration. It takes getting used to. Some people never do, they may choose to leave. Also some people never get over the anger and become very unpleasant people to be around. Some people take on the role with a vengeance. They martyr themselves. They seemingly give all to their loved one and neglect themselves. Some people come to terms with it and laugh in spite of the pain, and make a life for themselves and their families. There are as many different stories as there are caregivers.
While this may impose new limits, life can still be rewarding. The benefits of successfully seeking support will be evident in no time, and definitely the ones who open up, and learn to manage their new situation will come out best.
Caregivers are Very Important People...
The ones that stand by us when we are panicking to breathe. They act so calm and tell us to be calm. Helping us breathe in through the nose and out the mouth. All the time they are also panicking because they cannot do more to help us. They are the ones that wait in the hallways at the hospitals wondering what is happening behind the curtains. They are the ones that help us make the tough decisions on the next medical procedures. They are the ones that are like ducks in a pond. They look calm on the surface but underneath they are paddling like crazy. They are the ones that tell us not to worry when we try to apologize for being a burden to them. They are the ones that stay with us and never ask anything from us except our love.
Care giving…
- For some it means providing 24 hours care for someone who can't dress themselves, feed themselves, go to the bathroom themselves, etc.
- is waiting, because a diagnosed disease has not exhibited debilitating symptoms yet.
- can go on for a few years or for a lifetime. It means re-evaluating finances, re-evaluating job opportunities, making compromises. It means always asking if someone's home or a restaurant is accessible. It means noticing curb cuts and broken streets.
- means running to the doctor trying to find out what is wrong, trying to give the faltering steps, the blurred vision, the tingling sensation a name and then when they have a name, wishing you had never heard of it.
- is wondering why no one ever asks how you are.
- is dreaming about being alone in your own house.
- is coming to terms with your beliefs regarding the right to die with dignity.
- is learning about wheelchairs, lifts and little gadgets that help you button a shirt.
- is learning how to deal with doctors so they don't give you the run around and treat you like a child.
- is the relief you feel when your spouse says he/she felt good today.
- is hard work.
- is sharing pain.
- is loving and giving and sharing, but care giving isn't fun!
- is accepting and learning new things and going on, and on, and on.
- is lots of questions and very few answers.
- is being out of the mainstream.
- is fear of the future and dealing with the present.
The "other Alphas" are our spouses, housemates, parents, significant others or whatever other names that you want to give them. They are the ones that we place all of our trust in. They are the ones that we ask to make the tough decisions for us if we cannot, due to our medical condition. They are the ones that we had hoped we would be making happy for the rest of our lives, before we were diagnosed with Alpha. They are our pillars in this life and we must tell them just how much we appreciate them. Give them an extra kiss and hug.
There is no stronger person in this world than the one who stands by us in our times of need. Someday I know we will be able to repay Caregiver!
Telephone: 540-948-6777 or 1-866-FOR-A1AA (1-866-367-2122) Fax # 540-948-6763
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