Guilty Pleasures

By Lori La Bey of Senior Lifestyle Trends

The guilt has passed or at least this last “Guilty Caregiver Wave” has.  My heart was feeling heavy because I canceled Mom’s 82^nd Birthday Party.  She is a “New Years Baby.”

I knew I would reschedule the party once I felt better and could coordinate family to be together, but for some reason this was more than a birthday party to me. 

So why the guilt?  Why the heaviness?  

I had to analyze my feelings.  I had to dig deep.  I needed answers and to find that peacefulness within me again.  I needed to understand the source of my guilt.

So looking back I now can see the important things that affected me.

First, you need to know Mom is in her end stages of Alzheimer’s disease.  She wouldn’t know if we had her party on her actual birthday.  Heck, she wouldn’t even know it is her birthday!  So what was my problem?

Second, I didn’t want Mom to be alone on her birthday.  I knew I couldn’t visit being sick, but I was afraid of her being alone, without family.  I was afraid my family wouldn’t go visit her.  They rarely do. I no longer get upset about that.  I no longer judge them like I used too.  I understand how difficult it is for them.  I understand and accept the fear they live with.

You see Alzheimer’s disease is like this invisible net that traps families. People get tangled in the net, paralyzed by fear seeing their loved one disappear before their eyes.

Now given all of my fears and my families, I do have to tell you my family all stepped up to the plate and went and saw Mom on her birthday, New Year’s Day.  I was so touched, so happy to see them put Mom first.  Or did they do it for me?  Knowing how much I needed them to visit.  No matter which it was, I was thrilled and I knew Mom knew they were there.

My two Brothers each got a different response from their visit with Mom.  One got a giggle the other tears.  Neither seemed to understand that was her way of acknowledging their presence.  The tears and the giggling didn’t make any sense, but it is how she communicates now days.  Normally she just sleeps, any change makes me ecstatic.

Third, I found my guilt came from this deep seeded feeling Mom is dying.  It’s not like she is going to die tomorrow.  It may be months.  I just felt and still feel in my heart she won’t have an 83rd birthday and so I wanted her 82nd to be perfect.  No wonder I felt a huge burden of guilt.  It all made sense now.  I was dealing with yet another stage of “Good Bye,” in this very long series on Good Byes, called Alzheimer’s.

 Fourth, I do have to share I did reschedule the Birthday Party for January 16^th, 2010.  We held it in a conference room at the nursing home.

This year’s Birthday Party was different.  Mom’s ability to interact had declined significantly.  I filmed it, but haven’t been able to look at it, to re-live it, and truth be told I probably never will.

You see the film captured Mom in her “lounging” wheelchair which takes up one corner of the room.  In the opposite corner was my family.  It seemed so strange to me.  The room felt out of balance, totally disjointed.  I don’t think anyone else was aware of it but me.   I’m just so connected to Mom.  It was hard to feel the disconnect, but to actually physically see it. It made me feel ill. It reminded me of a boxing match.

I tried to facilitate family to interact with Mom saying things like, “Would you like to feed Mom some birthday cake?  She loves her DQ cake you know.”  I felt myself working the room.  My mind kept saying “Don’t they get it?  Can’t they see the opportunity to create joy with Mom, for Mom, is dwindling before their eyes?” 

Fifth, I admit I worry about how everyone will do when Mom passes.  How will my family deal with their loss?  How will I? Will we be content with the time we spent with her?  How will we remember her?

I know bottom line I shouldn’t even think about these things, but I do.  I think it’s a natural thing to do, or it is for me anyways.  I do know that if I’m going to pose these questions they should only be posed to me, as I am the only one I have control over – me and my choices, that’s as simple as it gets.

I have learned worry is a useless emotion.  It fills no purpose.  It answers no question.  It just distracts, drains, and makes me spin.  So yes, I need to let go.  I need to stop worrying about things I can’t control.  I know I just need to focus on my relationship with Mom.  Nothing more, nothing less.  So why is it so hard when I know what I should do?  I guess getting older doesn’t change that. I just recognize it easier, well sometimes I do.

Sixth, this 82^nd Birthday Party was also different because I wanted to share with my family what I do with Alzheimer’s disease.  How it has changed my life.  How I am not just an occasional volunteer for a cause I believe in.  I am “AN ADVOCATE ON STERIODS FOR ALZHEIMERS’S DISEASE.”  I don’t even feel like I have a choice in this role anymore.  It is who I am.  It is why I am here.  It is my life, my mission, my purpose.

Given all this, I decided to bring my computer to the party strange as it may sound.   I needed to.   They all knew I did something with Alzheimer’s disease; it was time for them to learn what I do and why I do it. 

So as we decorated the room I played a music therapy video of Mom I had made this summer.  My family was amazed to see her beautiful response to the music.  Funny thing was, Mom responded all over again at the party to the music playing; she just was not able to respond like she did in June.  The change in her ability to react was noticeable to all.

I shared with my Brothers my resource website “Alzheimer’s Speaks” and the Blog.  I think they were both in a bit of shock when they realized how much this disease has impacted my life.  How it has lit a passion in me to help others deal with the disease.  How they have helped me realize the needs of families.

We talked about my book coming out this summer called “Alzheimer’s Speaks – Guiding Caregiver to Be Their Very Best! –  Giving Voice, Enriching Lives as the Cookie Crumbles”

I mentioned a TV interview which will be airing soon and will have Mom‘s music therapy session highlighted along with the work I do.  I shared a memorial jewelry piece I found we could create for each family member as a remembrance piece of Mom.  They thought was a cool idea.

It felt good to talk about these things with my family as they haven’t really been discussed.  One of my brothers came and heard me speak one time.  He just asked,”Where did all these stories come from?”  I was shocked as I had told them before, but we only hear what we want to hear.  What we are ready to hear.

Seventh and bottom line, the party was a success.  A shorter timeframe yes and less interaction with Mom due to her decline, but still a good time.   As a family we were together.  We celebrated Mom’s 82^nd Birthday together.  We captured wonderful photos filled with love, laughter, and of course balloons!  This we will have forever…to together. 

We wrote in a family gratitude book I started last year for family functions and everyone wrote a little something in the book.  Together the day was a blessing.  A gift of remembrance for future times.

My guilt has now disappeared and I look at the photos of Mom each day as they scroll on my website bringing me joy.  I’ve found that peacefulness inside once again.  Yes Mom’s 82^nd Birthday Party was a success.  It was a true Guilty Pleasure.

To see all the birthday party photos go my resource website they are on the home page scrolling with the big balloons.

at   www.AlzheimersSpeaks.com