Aug 28, 2013

Not Dancing, But

A few years ago, at the height of the drama of taking care of my Mom, when we were in and out of the ER all the time and I was bone weary, I received an email from a woman who had taken care of her mother for 10 years.  She spoke of dancing around the room the day her Mom died -- finally free from the burden of care and cut loose from a woman she had grown to hate.  The email promised me that the day would come when I would be set free and have my own dance. 

I did not respond to the email.  Frankly, I was appalled.  But, it also touched a place I recognized and I was appalled at that too.  So I hit delete, and did what all caregivers do -- put one foot in front of the other and kept on caring.

The day or two before my mom died, they told me she was wasn't going to survive.  I did not realize that they meant she would die in a day or two.  I thought it would take months, so I went to work the day before she died, thinking that I would be in and out of the nursing home every day for months and so I needed to ration my time.  Add that stunningly poor decision to the list of life's regrets.

But the next day I was there, sitting by her bed watching her breathe.  I sat there thinking about the past, wondering about her life's decisions and mine, and wondering how long she would live.  The hospice nurse told me that I should speak to my mom, tell her goodbye.  I shook my head and asked to speak outside the room.  Would this be weeks, months?  I wanted to plan, to take care of the business that needed taking care of.  There would be paperwork and things to do.  I needed to make a list.  Maybe I could work from home, which was near the nursing home.  I could be there all the time and still work.  Did the home have wi-fi I mused so I could keep up with the business of life and be there for my mom?

I wanted my mom to go back to being 75 and come out to the mall with me.  I wanted her to die and end all of this.  I wanted her to recover so we could talk one more time.  I wanted her to see my son graduate from college.  I wanted her to be happy.  I wanted her to walk up a flight of stairs to our new kitchen and have dinner with us. I wanted a lot of things.

Finally, the nurse snapped me out of this reverie by saying your mom is dying now. You should say goodbye.  I went back in and sat there silent.  I didn't say goodbye.  I thought I had said everything I needed to say already.  And then she stopped breathing.  The nurse looked at the doctor, who had just arrived, and shook her head.  They told me she was gone.  I looked at her and could see death. 

I walked away, sat in the hallway.   I kept thinking "so this is how this happens."  "So this is over."  I had so much more I wanted to say to her.  I wanted so many things.

Since that day, I thought about that email.  I'm not a saint. I understood the relief that woman felt.  Taking care of someone is hard work and it is a burden.  A burden I took on that I do not regret. But it took a toll and I get that. The guilt that comes with feeling that someone you love has become a burden is in itself another burden.

So now I'm "free."  I haven't danced, and I haven't want to dance, since my mom died.   But I have grown to understand that email writer a bit more.  I wish I had her email address.  I would tell her that I want her to be happy.  I want her to walk out of her home every day and not want to dance in anger and relief, but dance because she is living a worthwhile life.  I hope she is.


Mary said...

That was beautiful. I am in the middle of this season of being caregiver to my Mother. I understand how there can be relief when this season is at an end and a new one begins. But I don't foresee ever feeling "joy" about it. I see "relief"....poking it's head up, lurking around the edges of the road a ways off....and feel guilty for even acknowledging it's there.
Mostly, I try to focus on doing all she needs me to do, and not leaving anything unsaid.

Sara Mac said...

Joan, thanks for sharing this beautiful, heartfelt insight. Blessings.

Leah said...

Very beautiful post. I am sorry for your loss. I think only in loving truly can we really be free. Even if love costs us all we have.

Smilie girl said...

Lots of love to you my lovely. Beautiful musings. Thank you for sharing.

Merryf said...

OMG Joan that is powerful and raw and truthful. Thank you so much for sharing. It's hard when our moms die. My deepest condolences.

Susan Raihala said...

Dang, Joan. This is a beautiful post and got me teary both for your loss and the depth of your compassion for the writer of the email. Thank you for sharing.

s said...

My mom is 87 and I'm her caregiver. Even though she is fairly independent (she lives in a retirement home but I do her shopping, financials, cleaning, etc.) when she introduces me to someone she says that she's the child and I'm the mom. It sends chills through me every time.

Your posts about your mom are important to me, and I hope you continue to share them. I love my mom and want to do the best by her, but the future scares me.

Sarah (kegbo)

Suzanne said...

Joan, we (my mom, sisters and I) have been taking care of my maternal grandmother for nearly two years - she is in assisted living with Alzheimer's and so much of this resonates. Among the 4 of us, we all have different approaches and attitudes toward her care, which is somewhat surprising to me, but I like to think that each of us is doing the best we know how. You certainly did that, Joan. Even if words were not spoken, your mom already knew what you wanted to say, and what you're thinking and saying now - because she's your mom. That's what moms do. xo

Joan B said...

Thanks Suzanne. It is so great that you and your sisters are helping your Mom and pulling together to help your grandmother. Good luck

Joan B said...

Yes, there definitely is a point where the relationship "flips." I understand that you are scared and hope that nothing scary happens!

Kathryn A said...

This was very powerful, heartfelt and honest. Thank you so much for sharing.

Pat said...

Another post hits me below the belt. I was the caregiver, too. My Mom has been gone for almost 2 years and, as I approach retirement, I find myself missing her more and more. I have so many questions I'd like to ask her NOW, so many conversations I'd like to have NOW.

I visited her grave for the first time today. And came home and read your blog. Tears for both of us.

Jenni said...

so sorry to hear about your mom. you are in my thoughts and prayers.