Guilty Pleasures

Guilty Pleasures

By Lori La Bey of Senior Lifestyle Trends

Mom's 82nd Birthday Party

The guilt has passed or at least this last “Guilty Caregiver Wave” has.  My heart was feeling heavy because I canceled Mom’s 82nd 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 16th, 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 82nd 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 82nd 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 82nd 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.


12 Replies to “Guilty Pleasures”

  1. Fear makes people run and hide. I’ve recently come to terms with my families choices.

    Like you, I know that the only one that I can control is myself and how I chose to react.

    Definitely easier said than done, but everything is possible when we believe.

  2. HI Sue

    You are right hide and seak is a game we play with memory loss. Realizinig we can only be responsilbe for our own choices is so helpful. I think I bettter write that one down so I see it when I forget! 🙂


  3. Lori, what memories you created for you and your family! Even if your mom doesn’t remember, the rest of you have the memories to treasure. And it sounds like there was some reaching out to each other and some lessons learned from each other…what special gifts you exchanged.

    I’m glad you came to terms of not being able to be with your mom on her actual birthday and not feeling guilty yet finding the pleasure and peace of the rescheduled party.

    Your mom looks beautiful all decked out for her party and it looks like everyone was enjoying their time with her. Thanks for sharing them with us.

  4. Thanks Beth

    This was a hard story for me to write. I cried a lot through all the emotions. The ups and downs… but it felt so good to process it all. Released so much heaviness from my heart.


    1. Lori…you finally get a chance to write down your heartfelt feelings.

      You are a lovely woman and I am glad that at least a little bit of heaviness from your heart is lessened…somewhat

      Love you 🙂

      1. Hi Michelle,

        Your right this article did lift a huge heaviness in me. I know there will be more come, but that is the nature of the beast… called illness. I am so glad we took pictures though as they make e smile often. I will stop in and visit Mom today and see how she is doing. We too got hit with snow but nothing like you guys! Yikes. I loved your comments to Kate. I can so relate to you missing those silly conversations with your Mom. I miss mine as well, even though I can still have some they are more limited as she declines.
        Thank you so much for your support and friendship as we journey through this maze of Caregiving. You have been a gift to me and I so appreciate you taking all the time you have to share your thoughts, fears, and joys.


  5. My dad always taught me that when things seem the worst, to wait a minute, it will change because nothing ever stays the same. Today will be a brighter day!

  6. Lori,

    You mom look so cute with all her balloons and crown and pretty smile, so I hope you will remember that. In her way, she knew she was the center of attention.

    I think its normal to recognize your mom is dying little by little – at least it’s normal for me. I think occassionally how my family will react – will they realize they could have spent more precious moments with mom? I know that need drives me to visit her when I’m tired, when I’m busy, when I’m stretched so thin I think I will snap. I actually visualize myself at her funeral and I want to be able to tell myself I did all I could for her, I was her best friend when she needed me and I didn’t leave her alone.

    A number of us have commented that we realize our other family members can only give less, whether due to fear, denial, discomfort, or sorrow. I too, no longer get angry. I think we reach a maturity where we know that we all only do what we can, and I can do more, for some reason.

    Bless you.

    1. HI Kath

      Thank you for your supportive comments. It’s so nice to hear someone else comment on how happy Mom looks. Sometimes I feel like I am the only one that sees these signs.

      Good luck with your own journey and please stay in touch. We all need one another to get through these times.

      Blessing to you and your family


    2. Kate…I remember when I got to the point of no longer being angry with my siblings. What a huge relief.

      I also pictured myself at my mother’s funeral and often wondered if I would feel guilty for the times when I was tired, busy, or stretched so thin by all that had to be done…

      There was a time when I didn’t visit my mom…like a good daughter should. I now ask myself — did I do all that I could have done for my mother, even with limited visits during her last few months. I NOW take comfort knowing that I did for my mother when SHE KNEW what was going on. Sometimes I need to remember and not feel guilty for not visiting much in the later months. Knowing my mom the way I knew her…she wanted me to take care of myself (breast cancer survivor) and did not want me to get sick. She would tell me (prior to living in the nursing home) — take care of yourself…I will be okay. I am filled with tears while writing this. I am trying to do just that. And my mom would just be satisfied with me doing…just that. Guilty…yep, it does creep up. I realize I am sounding wishy-washy…but my sisters stepped up to the plate in her care — in the latter months — and I hate the fact that my mom didn’t know. She would have been SO SURPRISED that my middle sister took care of her the way she did. They were never close, but my sister took on the role of caregiver when my mom was in the nursing home. It was such a huge relief to me, because I felt that I could finally rest and take care of myself. I was so stressed during her illness that I dreaded the breast cancer would return.

      I was the one who “appeared” to be strong for everyone, but I suffered for that. Only my husband knew how I felt during those final 3 months.

      Had a meltdown yesterday at home and literally cried for hours. I miss my mom and miss the conversations…just talking about nothing.

      We had the terrible snowstorm this weekend and I remember how I would call my mom teasing her about shoveling snow. I would say, “mom, I am checking on the elderly, seeing if you are still with us” — and she would just laugh so hard. We would sometimes talk 4 and 5 times a day and sometimes I would worry if I was getting on her nerves calling her so much. She was truly my friend and would say — if you were getting on my nerves…then she would say so. I just miss those silly conversations with her.

  7. Hi Lori

    I posted about your mother’s party somewhere else…I can’t even find it…lol

    Such a lovely party. I believe she knew…I can tell in her expressions, and I have never met your mom. Like I mentioned earlier…you will always treasure that day 🙂

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