Wednesday, January 09, 2008

Quality of Life

Quality of life is not a subject I ever thought I would be writing about, especially not at the age of 65 and not about me. But it has been on my mind for three years now, ever since my ALS diagnosis (about four years symptomatic.) I have learned a lot in those three years and because it's an important subject for most of us at some point in our lives, usually because of parents, but sometimes because of siblings, friends, our children or ourselves, I have decided to share my thoughts.

In the beginning, trouble with my hands or difficulty on the stairs didn't seem to be such a big deal and denial was easy. This couldn't be happening to me. But as time passed and I had to quit a job I loved, give up kayaking, hiking and the like and relinquish my driving privileges, reality began to set in. When I started falling down and had to purchase a walker and wheelchair, I came face-to-face with some very hard truths.

What's worse, I was alone most of the time during the week as my husband had to work, everyone in my family works and my friends work. I was terrified and although I swore I would fight with everything I had and promised myself to keep a good attitude, there was too much time to think. And one of the things I thought was that if I ever reached the point where I could not take care of myself and became a prisoner in my own body, could not go to the bathroom, wash, feed or tend to my own needs, I would be done and would not want to go on. I knew at some point I would have to get someone in to care for me, but that made me feel worse rather than better because I could not picture myself helpless in the hands of a stranger. I was trying hard but could feel the smothering blanket of depression coming down around me, I was looking into the abyss.

Then Barbara, my caregiver, came into my life and I learned something very important. I believe that quality of life is a personal thing, we each have to decide what we can and cannot live with, but I now know that quality of care can make or break how you feel about living. Some of the people who care for the elderly or the infirm are not what I would call true caregivers, there is a difference and that difference makes all the difference. For those of us who need their help, we also need to keep our sense of pride and emotional independence. Barbara has a heart that is huge and a giving soul and she has become my friend, we are in this together and she is helping me to fight on. Instead of the helpless, self-conscious feeling of embarrassment that I had expected, I find comfort in her ministrations, camaraderie and empowerment. She helps me to keep my sense of self; I am about me, not my disease.

As my dear friend Tammy and a few others have proven, sometimes ALS stops progressing for no apparent reason. And there is always the hope for a cure. What I didn't know before but know now is that with the right caregivers by the side of those of us who need them, it is easier to fight, easier to hold onto hope, easier to live a worthwhile life. Family and friends are extremely important, but the caregivers are our lifelines.


Anonymous Coll said...

I found this post initially difficult to read as what you are living with is, I think for many of us, incomprehensible. The "there but for the grace of God go I" thought can be a scary one. I wonder if I, in a similar situation, would have your grace, your courage. But by the end of your post I was filled with hope and an enlightened understanding. Your inner strength and determination is a true inspiration. And Barbara is an Angel.

11:41 AM  
Blogger Mama P said...

Do you see why I linked you to a national website? I hope everyone comes over here and reads you, because what you have to say is far more enlightening than how to spice up your sex life. You, my dear, are the essence of class, grace, humor and courage.

Hugs to Barbara!!!!!!!!!!

1:28 PM  
Blogger Anvilcloud said...

I think I have indicated before that I think you're both amazing and an inspiration, an amazing inspiration maybe.

I agree with mama p, you should be widely read.

I also agree that however they get there, having the right people around makes all of the difference.

2:20 PM  
Blogger KieKay said...

BARBARA: blessings lite upon you!

PAM: And upon you as well!

3:13 PM  
Blogger Tammy said...

Batman, you are a teacher of hope and perseverance. You have taken a very scary time and yet shown us how to maintain a good quality of life.

Caregivers are angels who live among us and teach us how to receive love. I have met your angel and I'm now thinking cloning might just be an option. lol

Thank you Barbara for taking care of Pam, making her laugh and giving her hope! BIG FAT TAMMY HUG!

Thanks for the light you both shine on us all. XXOO

6:21 PM  
Blogger Carol D. O'Dell said...

I agree, caregivers are rare and precious. Thank you for your blog. I'm always interested in "how is it for in there?" (James Taylor song)

I wrote a vignette about the word, "caregiver' in my book, Mothering Mother. I wrote it because in a way, it's strange to say I was my mother's caregiver. I'm her daughter. She's my mother. And yet, because of Parkinson's and Alzheimer's, I guess I became more than just her daughter.

I guess everyone defines it differently, but I do know that some people having a caregiver's/nurturing/intuitive heart--and others don't.

Take care, and thank you for writing.

~Carol D. O'Dell
Author of Mothering Mother: A Daughters Humorous and Heartbreaking Memoir

8:04 PM  
Blogger Crayons said...

Hi Pam,
I'm so glad you wrote this piece. Since we don't see each other, I sometimes forget that ALS has attacked you body. I don't think of you a "my friend with ALS." I think of you as a big sister, really.

But this eloquent post helped me look more deeply.

It takes a very special soul to be a true caregiver. It also takes an evolved soul to accept the care of a caregiver. Your union looks to be greater than the sum of the two parts.

Keep writing, Pam. Your thoughts are so clear.

10:27 PM  
Blogger Bonita said...

As someone who was a caregiver in assisted living, I can assure you that 'you' made our lives meaningful, we needed 'you' as much as you needed us. The reciprocity of care goes both ways and is such a divine grace. I wish both you and Barbara the very best in your relationship.

12:29 AM  
Blogger Cuppa said...

Beautifully written. Thank you for this heart warming post. Heart hugs to you and Barbara.

9:11 AM  
Blogger Ginnie said...

If anyone deserves an angel like Barbara in their is you, Pam. Your life's experiences (as depicted in your blog)have taught me so much.
Lots of love to you both.

1:53 PM  
Blogger Bitterroot said...

Pam, thank you for sharing your soul with us. This post was particularly inspiring to me as my husband and I (both with a terminal illness) may be facing the caregiver situation at some point. We're able to do now what we've always loved doing, but that could change overnight. It was so helpful to read this today. Kudos to Barbara!

1:24 PM  
Blogger Endment said...

Thank you for sharing these thoughts - I really needed to hear these words today

4:54 PM  
Blogger kate said...

What an incredibly wise, courageous and strong person you are. Barbara sounds as if she is a wonderful caregiver and that the two of you have developed a special relationship. That's the way it should be.

8:36 PM  
Blogger sharryb said...

Hi Pam,
I came over from Fried Okra. Thanks for sharing so deeply about your life. I loved seeing the beautiful pastels posted. You are such a gifted artist. With color and with words. I appreciated hearing your thoughts and experiences regarding caregiving. I'm sure this is something I'll need to know at some point.


10:59 AM  

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