I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

24 December 2010

A Walk In Care Giver Shoes

Maryann and Me... together again
Thanksgiving 2010
Several years ago, I remember a conversation that I had with Maryann.  The call didn't go very well, it ended where I said something that pissed her off... we didn't speak again for several years, this year is the first time we spoke.

Maryann, she was Uncle Al's Care Giver.  Uncle Al has Lewy Bodies Dementia, only we didn't know it's what he has until my mom began having symptoms, vivid hallucinations and fluctuating cognition, the tell tale signs.

Looking back, Maryann was burned out, just like I am these days.  She just had her little baby and Uncle Al was her 80 year old toddler who was not growing but declining.  The horror she must have experienced, alone with her new husband, new baby and a dad who believed that he could do way more than he was capable.  I'm living this nightmare.

I wasn't a very good friend when Maryann was going through this tough time with her dad, I was too busy to stop my life for five minutes to listen to her cries for help.  All she needed was for me to listen and help her with her dad.

Maryann needed my time, but I was like an ostrich, head in the sand as I turned a deaf ear.  Instead, I fought with her, I made it harder for her to cope with her situation.  I was ignorant to Uncle Al's illness and Maryann's pain; not a good excuse.  I was self absorbed.

I said words that cut her like a knife, words that I wish I could now take back.  However, like our Uncle Auggie always told my mom, "be careful the words that you use because you can never take them back."  Advice I have difficulty remembering even today; is there hope for me yet?

Uncle Al ended up in a nursing home.  I was angry.  I asked questions, "Why didn't she tell me?!"  I visited     Uncle Al with my fiancée.  I cried.  Uncle Al sang "You Are My Sunshine" to me and I cried.  The home he lived, in my opinion, was the saddest place on Earth.  I visited a lot.

My life turned upside down.  I lost my job and was faced with selling my house during a time when the housing market was about to implode.  I got married.  Moved my mom in with my new husband and mother-in-law, a MIL that hated me.  My mom, she lost her mind and I lost my freedom.  I slowly began to drown in the sadness, the weight of the world on my shoulders made life difficult to cope.  Like Maryann, I needed my family.  Like Maryann, my cries went unanswered.  I became angry with my family, very angry.  I felt abandoned.

I tried on the Care Giver shoes, I began to walk in them... I couldn't take them off.  I felt like Dorothy in the "Wizard of Oz", she had put on the ruby slippers but was not able to take them off.  She was trapped in her nightmare, just like Maryann and now me.

Life happened and it sucked.  I cried a lot.  I had no idea what was happening to my mom.  Life as I had once known it was a distant memory.

My husband recommended that I start this blog to help me to vet out my feelings with regard to Care Giving.   It was the best advice that I have acted upon, this blog has helped me to cope with the heartache and loss.

Fortunately, Maryann loves me and finally forgave me for not understanding her situation with Uncle Al.  She read my blog.  I made her mad, especially when I wrote about her.  I made assumptions that were wrong; I am sorry.

I have a new understanding for what Maryann lived through as a Care Giver because of my experiences.  I know how those Care Giver shoes feel, like the most uncomfortable high heels one can wear and attempt to run a marathon.  No one will ever know what it was and is like for Maryann and me, not until they put the shoes on and begin to run, chasing dementia.

The situation between Maryann and me, it happened.  We can't take it back, none of it.  We lost time, precious time that we could have spent supporting each other and offering a hand that would make coping easier.  But, we didn't.  Instead we chose to have discord which only made both of us feel worse.

Today, I am faced with similar feelings toward my family that Maryann had toward me.  I reacted toward her the same way that my family reacts toward me now.  I ignored her.  I was engulfed in my life and couldn't hear a word that my cousin was saying because I had my own perception of what was happening.  I was wrong.  I am sorry.

Walking in Care Giver shoes is painful, especially when carrying the burden alone.  Often as a care giver I think how nice it would be for family to rally around and pitch in equally with the caring of our aging mother.  But, it's a pipe dream, an unrealistic dream that I chose to believe; a dream that caused me to be judgmental and angry.  I drove my family further away, just like Maryann did to me when she was going through the trauma of caring for her dad with Lewy Bodies Dementia.

I had lost all hope to reunite with my cousin Maryann.  I had lost hope to ever reunite with anyone in my family.  The idea of losing not only my mom but my entire family ate at my soul.  Slowly I became more and more depressed.  I wrote about my heartache.  I called people out, based on my beliefs that were born from my sad emotions.  I was wrong.  I am sorry.

Today, my family still doesn't come around but there's one thing that's different, I understand.  I understand because of Maryann, my cousin who wears the same uncomfortable Care Giving shoes.  Fortunately, Maryann and I have each other to lean on.  Thank GOD!

Maryann, she understands me.  She KNOWS what I am going through.  She knows exactly when to call me on the phone to just listen and offer me comfort.  Together we walk in our Care Giver shoes, supporting each other when the pain is too great to walk another step.

I am grateful for my cousin.  She is helping me cope with the loss of my mom.  All I can do is listen to her when she needs an ear to help her cope with the loss of her father.  The two of us know how Care Giver shoes feel, we know what Care Giver's need from family.

I am grateful to have someone in my family who understands and intuitively knows exactly what to do to help.  I would be lost without my cousin Maryann, the only one who truly gets it because she has lived a mirrored experience with her dad, my Uncle Al.

Thank you Maryann.  Thank you for your strength and support during those times when the shit is flying; leaving me paralyzed with sorrow over the perceived loss of my own life.

My family.... I am sorry for judging all of you.  You have no idea what these Care Giver shoes are like to walk in and unfortunately, you will never know unless you find yourself sporting a pair of your own one day.  I can tell you this much, if and when you do wear Care Giver shoes for a loved one, you can be sure that I will listen and intuitively know exactly what to do to help you to cope with the heartache and loss.

I love my family and pray that one day we are all together again when my Care Giver shoes have been put on the shelf.  I miss family love.  If I had one wish for Christmas, it would be for my family to return and rally in my corner, supporting me through one of the most difficult times of our lives.

Do you dare take a walk in Care Giver shoes?


  1. Your words have brought me to tears. I understand. I remember when I was young, my grandmother always instilled in me the lesson that - if you want people to be there for you, you have to be there for them. I have tried to do that over the years, but I get a little bitter when I watch family members we have supported in the past, walk away from me and Mom. Luckily there are still some who have been there for me through it or else I wouldn't have made it this far.
    People who have never cared for a Dementia patient have NO IDEA what it is like. I have had to come to the realization that you cannot make people be what you want them to be. It was a long tough time to get there.
    Merry Christmas to you and yours.

  2. Kim...our job is difficult, no doubt. We have to forgive those who don't understand. It's hard, I know... but once we do rise above our hurt feelings, life suddenly gets better. Merry Christmas and may all your dreams come true.

  3. Susan, I have walked in the care giver shoes twice. As I read your post there were memories of those long hard days popping into my mind.It was so much work with very little support.If I have not mentioned who I cared for before,it was both my father and mother in-law.

    Currently I offer support to my mother who is caring for my dads mother. She has dementia, Alzheimer's. My experience has helped her when now one else seems to understand. I just sent your the link to your blog. Since I keep telling her she needs to start one to just vent on.

    Hope you had a very nice Christmas.

  4. Thank you for your comment, Jenny. I hope your mom does start a blog. I'll be a reader!

    It's hard to get out to support groups, the online care giver community is amazing. Lots of loving souls offering support.

    We had a very nice Christmas with family, hope yours was pleasant too.

  5. I have an idea!! Lets tie the laces together and throw them over the power lines and run off ;-)
    just a thought, sigh

  6. Ha Ha Ha... Yes, let's do it!!!!!!!!!

  7. Susan, your words touch me deeply this place I am in is the lonelest place in the world. My blog is the only way of venting what is in my heart and mind, I can not imagine this experience with out it. Thank you for being open about you life this way, it really is a blessing.
    Sheri (Living in the Shadow of Alzheimers)

  8. Hi Sheri... I read your blog and feel your pain. Your blog is a reminder that I'm not alone, that I share something with people like you that I have never met face to face. Our blogs definitely give us strength, without it, I too would be lost.

    I feel that I need to be totally open with documenting my experiences as a Care Giver... my goal is to portray this journey clearly so that non-care giver types can have a glimpse into a day in our lives.

    You are a gem Sheri... I'm happy to know you through your blog.