I remember a couple of years ago when I was in the midst of caring for my husband and my dad that my daughter made a statement that things looked different to her from the outside looking in. She was talking to me when I was very anxious and concerned about my job as caregiver. I would talk to her about how tired and frustrated I was at times and appeared to be very emotional. She would feel free at times to express her opinion about situations that she had not been a part of or had experienced. It was hurtful at times but I respected her right to her opinion and at times I prayed she would never have to be in my position. I felt that I tried my best to protect my children from the ugly parts of care giving. The part where you have to step up to the plate no matter how bad you feel and take charge. The part where you are all alone and have given up your life to help someone you love. It is the part of care giving we don't like to talk about and the part others don't want to hear. Perhaps because someday it may be them.
From the inside looking out, I would like to give a brutal glimpse. I feel I have a right to be heard. It is the unspoken words of how you feel, but you try to hide it from family and friends because everyone is counting on you to take care of your loved ones. It is not an easy job as it comes with great sacrifices and at the same time it can make you feel good that you have been able to share even a difficult experience with someone you love. You are proud that you were able to get them through a rough time in their life. The outcome is not always a happy ending. We do what we have to do because we love one another. It is called compassion. As mothers we try to protect our children from the bad news, because we know that it is not easy dealing with the fact that our parents are ill. When you are young your life should be focused on living and having fun.
There is however a realization that sometimes the caregiver gets ill. I made the mistake of thinking that it was better to smile through the pain of my own life. I have been taking care of family since I was in my twenties. I kept a lot to myself about not feeling well perhaps it is part of my personality to be stubborn and push through pain and put myself last. However I am very hurt that I have been dismissed as being someone that is seeking attention. I kept my illness tucked quietly in my heart. I have heard from doctors that I was lazy, and I should just focous on my husband. I even had a doctor goes as far as to tell me I was mentally ill and making up an illness to get attention. I was very hurt by the statement as I walked out of the office thinking I am not even allowed to get medical help. I have even had my own family tell me you don't look sick. I guess I missed the class on how to be a patient. I have heard from people that said to me you need to take care of yourself. Believe me when I say that I have tried. It is not an easy road when you are in someone's shadow.
I don't blame anyone for their illness or mine. I was disappointed in the health care profession that dismissed my illness as something in my head. In fact that I had to demand that someone help me when I was too ill to go on. I still kept smiling and pushing myself to protect the people I love. I do have feelings and perhaps sometimes I just wish someone would acknowledge that I am not immortal. I do feel bad some days so excuse me while I rest or cry. I won't waste too much time, because I am strong and I see that living is the best thing to do when others are looking from the outside in.
Try to remember that someday you may be looking from the inside out and I hope that you will get the help you need and you will be noticed. The best advice I have for caregivers is that you deserve to take sick days and that you need to be your own best advocate. Sometimes you have to quit protecting others and look out for yourself.
Well, excuse me I am feeling good now and I have a lot of living to catch up on.
God bless all patients and caregivers !!
Life is beautiful !!
Elizabeth:)
