A Hidden Road, Being A Caregiver

indiana sayingDo we really know our hearts? Do you or I have an inkling of who we are and how detailed we are made? We are magnificent creatures.

Each of us, having been designed with some hidden talent, just waiting to show the world. I was one of those for years that didn’t know I had a talent. I was brought up to never praise myself in front of others; to do this would be considered bragging.

I was not aware that some talents do not involve actors on TV or singers or playing the piano. It took Word Press for me to finally get it through my head that my hidden talent was caring.

Sounds pretty dull doesn’t it? It doesn’t get bring me stardom, so I will never be rich from it. No one notices outside of those who know who I am. But caring for others replaces the “Me” thought and places it on he or she.

I used to think over twenty years ago that being a caregiver was a piece of cake. I wasn’t in a factory. I wasn’t outdoors in the freezing weather climbing poles. I was inside a warm house, sharing meals and conversation with strangers.

Strangers is such a short-lived phrase. It doesn’t take long at all when you sit and listen to the patient talk that you are drawn into their earlier life. You learn to feel their dreams, and cry with their regrets of growing old and dying.

Yet not everyone can be a caregiver. It is one of those jobs that you best not take it if you are doing it only for the money. Care givers work from the heart for the most part. The physical load I carry is much less than the broken heart watching someone you love or respect or maybe both get worse and die.

Once I discovered the hidden path that makes up me, Terry, I was more content. I was never ashamed again to speak up and admit I am a caregiver, not “just” a caregiver. It is a proud position and I thank God that he chose me to do this type of work for him. When he made me, he put all the right ingredients and he knew I would not fail him.

I have taken care of strangers and I have taken care of family. Of course family is the most difficult by far. More love and emotions, strings attached from years gone by are naturally attached.

Now I deal with Multiple System Atrophy. There are days I cry. There are times I wish it was over. There are moments where I am beat and just want to sleep, but I always go back to the patient, who for me now is my brother, and I look at how brave, a real warrior, he is.

For I have only sat on the side lines and looked through the window and tried my best to understand how he feels. How can I possibly do that? I don’t have this terrible disease. He is the great and mighty fighter. He has fought greater wars than I have my entire life.

Each day when I hear his breathing as he struggles to get in that wheelchair  one more time I feel his will to live. Each day as I see him with fork or spoon in mid-air, and realize that inside he is telling his hand to continue to move towards the mouth, I weep.

The brain is not affected with M.S.A. Al remembers very well that he didn’t used to wet his pants. He remembers driving and working. He remembers having time to himself doing the things he enjoys.

Every second he is awake he is never alone. How humiliating it must be to have your own sister bathing you, changing you, feeding you, but he never says a word. I will ask him if he is enjoying his bath and he will say yes but then begin to cry.

M.S.A. sucks and any of us that are affiliated with it know this. But for my brother, he is a warrior, and for me, I have discovered that hidden road, that secret that was kept silent for so long; until I started to blog

purple candlesAl on SundayM.S.A. logomsa logobook4caregiver

Ping of Sadness Before I am Awake


I was woken up from my sleep by my phone going off alerting me to receiving a text. I rolled over and put my glasses on, and looked at the new message. It says, I am sorry, I am not feeling good and am on my way to the ER. I won’t be able to come today.

It was from the caregiver. At first, I was mad, then I became real, and realized I had made the choice to hire a very nice lady to watch over Al, who happened to have health problems also.

I have made a mistake, not thinking of me first, in a way. I thought of me first because I want a break so darn bad, that I hired a nice lady. I made a mistake though, by not being smart enough to realize that this could affect certain dates of her not being here, due to her health.

This is not the first time, nor the second, that my plans have gone down the tubes, but it is my last time. I can make choices. Although, I wish her well, and I hope her health becomes stable, I need a break.

My heart is feeling some sadness still at not getting out, but I placed an ad in the local newspaper to get a new respite caregiver, who is  healthier. My gosh, what if something happened to her while Al was in her care? I guess that statement is made in hind site.

This getting tougher around the edges and thinking in the priority level is difficult, but I am doing it. I would normally have just accepted the fact that she was not coming, been sad, and hoped for another chance to have my break, but this time, thanks to so many of you saying to me, that I need to be a little selfish for my sake, I have placed the ad which will start tomorrow. I will get my break, I do need my break, and I think Al could use a break from me too. Let’s hope I find another nice lady with better health!