Answering the call to love:  how dementia taught me everything I needed to know above love 

I’ve written before (see here and here) about the challenges faced being the caretaker for my father, but wanted to come back to this subject again, with new awareness.  Through my dad’s illness I have finally seen that I am capable of intimacy, commitment and unconditional love.  

I have struggled with issues regarding men, intimacy and romantic relationships for a very long time.  Someday I’ll write more about it, but I’m still in the process of healing there, and, therefore still formulating my thoughts about the whys and the hows.  I do know that I’ve had issues with commitment and intimacy for as long as I can remember.  However, as my dad’s illness progressed, the call to love with unconditional commitment came, and I answered it.  Answering that call, has been one of the greatest gifts I have ever received.

Before my dad got sick, I viewed him as one of the strongest people I knew.  He is a tall man (over 6 foot) with a quiet, but powerful presence.  He was one of the most stable people I’ve ever met – had no illnesses to speak of and a very consistent personality.  In comparison to my mentally ill mother, my dad was the safe one in the family.  He was constant.  His mood seemed to always remain the same – easy going.  He was an engineer – smart, capable.  He could fix anything.  He worked hard for his family, and sometimes that hard work meant he wasn’t around much.  I adored my dad and wanted his approval, but never felt close to him.  We didn’t talk much, and when we did it was as acquaintances.  We talked about the weather, current events, sports, etc., but never talked about ourselves or what was going on in our house.  I never felt like my dad really knew me or that I really knew him.  All that changed when he got sick.

Shortly after he was diagnosed with Parkinson’s, I moved in with him.  As that disease progressed and the dementia appeared, we began having real conversations about ourselves, because we had to.  If I wanted to really know my dad, the time was now.  I could no longer wait for my dad to get to know me.  If I wanted him to know more about me, the time to tell him those things was now.  We had to talk about difficult things like what he wanted his care to look like, and how he wanted his finances handled.  We began to also talk about not so difficult things.  We talked about my childhood and his.  I learned that my dad is hilarious – I found out he is more than the 2 or 3 corny jokes he often repeated when I was a kid.  I discovered his quick wit and became familiar with his great laugh.   We had long, late night and dinner conversations about everything under the sun.  I found out what he thought of the men I had loved and who loved me. He told me the things that were important to him, and what he hoped I would find in my future.  He shared stories with me of his past.  He talked about his parents, his siblings, my mother, and his childhood friends. I got to know his likes and dislikes.  In short, we became friends.

As the dementia progressed, this man who I was just beginning to know, started to slip away.  He appeared fragile and scared.  He needed my help around the clock.  I had to take his car keys away (one of the hardest things I’ve ever done).  He seemed confused by the most simple things.  He suddenly was no longer the guy who took care of everything for me.  He was unable to even change a light bulb.  And, saddest of all, it became very apparent that he was losing his connection with reality.  

To see him afraid and helpless, absolutely broke my heart and also broke me wide open.  For the first time, I saw my dad as frail and sickly.  Suddenly I had to become the one “in charge.”  I had to become the responsible one.  After a lifetime of that being HIS role in my life, it scared me to see the roles change.  And the roles did quite literally switch – he was now more childlike and I was now in a pseudo parental role.

This transition to “responsible adult” was not always handled gracefully by me, that is for sure.  I complained a lot.  I leaned on my friends for comfort and support.  I cried to my friends that it “wasn’t fair,” and ranted over and over to them about exactly how unfair it was.  I kicked and screamed and resisted all the responsibility that was now in my hands.  I wasn’t ready to be the grown up.  In my 29 years of active addiction, I had managed to avoid a lot of growing up and still relied on my dad on a regular basis.  My dad had been my “safe place” — the one who helped me out after every huge mistake I made.  He was the ultimate example of a responsible guy.  He had seen all my failed relationships and took me in after each one.  He bailed me out of all my financial problems and every jackpot I got myself into.  And now, suddenly it seemed, he was the one needing bailing out.  I was full of fear about each phase of this new reality, but I had no choice but to grow up.  If someone had to make a decision, it had to be me.  There was literally no one else around.  My brother is in Alaska.  There’s no local extended family.  It’s just me and my dad here, and, now my dad was sick and getting sicker every day.  And, so, without any other option, I finally started becoming the responsible adult in my own life, and in the process, his.  I made the tough decisions regarding my dad’s health.  I made arrangements for his care as his disease progressed.  When he had to be admitted into hospitals, I took off work and stayed with him every night until he fell asleep.  I held his hand and stroked his head and told him we were okay, even when I believed that we were far from okay. It was now my time to be the strong one, the stable one — for him.  And for me.  

These days, my dad is sicker than he has ever been and has been officially diagnosed with Lewy Body Dementia (see link at the end of this post for more information on that disease).  He is in hospice care and lives in a dementia care facility, and doesn’t seem to have any idea of where he is or how he is doing.  Thankfully, he still (mostly) knows who I am.  I see him almost every day.  I bring him ice cream and I feed it to him.  I tuck him in with a blanket.  I scratch his head, and rub his back and arms and legs.  I try to remain as present as possible as he says things that I cannot understand.  I try to remain engaged with him even though I have no idea where he is mentally nor what he is saying or trying to say.  I just show up for him and give him all the love I can possibly give.  One day at a time, I just keep answering the call.

As a result of doing this day after day, I began to notice a change in me.  No longer was I dreading walking into his room as I once did, afraid of what I might find — would he even be alive?  Would he know who I am today?  Would today be the day he looked at me without recognition?  Those were the fearful thoughts I had for months when visiting my dad, but seemingly overnight, I noticed that I was different.  I began to walk in to his room with no other thought but: how can I best show up for my dad today?  How can I show this glorious man, who has become my friend, as well as my dad, that he is loved?  What can I give to him?  

cheryl7

With this new mindset, our visits became all about love.  The fear I was so attached to left the room.  As I talked to my friends about my dad, I noticed a softening in myself.  No longer was I filled with anxiety and despair about his health and the changes he was going through.  I began to accept the situation exactly as it was in that moment, without any expectation for change or reversal of his disease.  I began to see that I was being present with my dad, and that the sadness I felt was because I truly loved my dad without condition. It seemed that overnight I went from “I’m afraid, I’m sad,” to “I’m sad because I love him so much.”  Realizing that my sadness was a direct result of the love I had for him was the wake up call I needed.  Instead of dreading my visits because of fear of the unknown, or dreading my new found responsibilities, I recognized that the simple act of being present with him, feeding him ice cream, and rubbing his head, was real intimacy.  I saw that I was absolutely 100% committed to him, without feeling the need to run away (which was definitely my pattern in the past).  Instead of seeing the decline of my dad’s health as this horrific, scary thing, I began to see it as the way that I was opening up to love.  It was the call for real love in my life and I answered it.

I write this today with a heart wide open.  I will go see him later this afternoon:  bring him an ice cream, scratch his head, and tuck him in with a blanket.  I will ask him if he is in pain.  If he is, I will make sure the staff at his facility give him his pain meds.  I will walk in there not knowing at all what to expect.  Perhaps this will be the day he doesn’t respond to me at all.  Perhaps he will be asleep and won’t wake up, even as I loudly declare that I have ice cream (ice cream may be my dad’s favorite thing in the entire world.  In fact, when he was still at home and doing better, he would frequently text me while I was at work to tell me that we had an “ice cream emergency” meaning that we ran out of ice cream).   I have absolutely no idea what I will find when I show up for him today. But thanks to answering that call for love, it is all okay.  In fact, it’s better than okay — it’s all good.  Today I can accept the reality of the present moment.  I will show up for it in whatever form it is in the moment.   I will continue doing this until he takes his last breath.  I am completely and totally committed.  I am all in.  For me, that is a miracle.

So, how did this happen?  One day at a time.  Little by little.  I believe that meditation is the single most important act of self care that I practice.  I also found relief from doing written meditation by examining my thoughts through Byron Katie’s “The Work” (see post here).  I know that none of this would be possible if I hadn’t gotten sober first, and done the work of recovery from alcoholism and drug addiction.  I cannot do any of those things alone.  The community of friends I have built has provided continued support.    But mostly, I believe in the power of the God of my understanding.  I believe that He has a plan for my life and for my dad’s life.  I believe that we are both under His care.  I believe that by being under His care and protection, He has given me the strength to rise to the occasion, and has opened my eyes to see the beauty of the gifts that He has given me.  The gift is love.  The gift is intimacy.  The gift is commitment.  

Never in my wildest imagination could I have predicted that what I thought was the worst and hardest thing that could happen to me – watching my dad slip away through dementia – was really the best and most beautiful thing that has happened to me.  I got the call to love and I answered it.  And for answering that call, I was given the world.

xo,

C.

liz5

P.S.  My dad has been diagnosed with Lewy Body Dementia.  For more information on this little talked about disease, please click here.  

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3 responses to Answering the call to love:  how dementia taught me everything I needed to know above love 

  1. Janifer

    What a beautiful human being you have become. Glad you are in my life.

  2. rebecca Loewer

    This has brought tears to my eyes for so many reasons. I am so proud of you my friend. XxOo

  3. Tiffany

    I love this … God bless you. Taking care of our parents as they get old is our job. You answered that call with a fearless love in your heart. I can relate. God is good all the time ❤

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