Winding Down

Winding Down

The minutes turn to hours, the hours to days, the days to months, all the while, my sweet mother is winding down, like a tired old clock. Time is no longer our friend, though every second spent together is priceless. I sit by her side, her favorite History Channel playing on the television, as she dozes with the BiPap machine forcing oxygen into her lungs.

I tried to call her several times to say good night last night, but the phone just rang and rang. I began to worry, and called the nurses’ station. Mom’s nurse was with another patient, so the person I spoke with said she would have her call me with an update on mom’s condition. I didn’t want to keep Dan awake, so I took my cell and curled up in the old oak bed, the bed my mother was born in, and waited. Exhaustion has become my constant companion, and I went in and out of consciousness as I waited, jerking awake and checking the phone.

Finally, the phone vibrated loudly, and my mother’s voice called to me, “Neese? Neese? Are you there?” She had difficulty hearing me, and I had to speak very loudly (so much for not keeping Dan awake). I couldn’t understand her very well, but was glad to know she seemed okay. Her voice has changed so much, is so weak, that we can’t really carry on much of a conversation anymore. I miss her voice, I miss her making me nuts by never letting me off of the phone. My mother is still with me, but not really; she is changing, preparing to leave us.

After speaking with Mom, I crawled back into bed with Dan, and lay there, staring at the ceiling. I slept on and off, mostly off, and finally pulled out my iPad and started writing. It seems that writing is the only thing that is helping me hold on right now, so I write and write my heart out. I want to remember every moment of this time, keep it close to me, and I only hope that besides giving me peace, it might help someone going through this in some small way. The many messages I have received from friends who have lived through losing an elderly parent have been such a comfort to me.

I fell into a deep sleep at 6am, the time I usually get up. At 7:30am, my cell began buzzing, and I felt a moment of panic when I saw St. Vincent’s come up on the screen. Heart pounding, I answered. Mom’s nurse, Ellen, greeted me, saying Mom wanted to talk, putting Mom on the phone…”Neese? Where are you? When are you coming?”

“Momma, I overslept- I’m sorry, I didn’t sleep much. I have to feed the dogs and grab a shower…be there soon.”

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This is to be my new reality for a while. Mom panics if I am not next to her. So many people have offered to sit with her, but it has to be me. The only problem is that I am wearing out, as evidenced by my fitful sleep, forgetfulness, and just sheer exhaustion. I have learned to park on the same floor of the parking deck each day, as I have lost my car twice. Level D for Denise, Dan, and Dorothy…hopefully I can remember that.

The afternoon was tough. Mom’s pulmonary doctor came in and pretty much said that the BiPap mask was what was keeping her going. He asked her if she wanted to continue it, and she said yes…though every time we are alone, she tells me how much she hates the mask and that it is no life to be connected to machines. It is her choice as long as she is coherent. I just feel that the mask is prolonging her discomfort, her indignity…the inevitable. I do appreciate Dr. Hayes- he is a straight shooter, something I need right now. When I first spoke with him, he said, “I can tell that you are very bright and a little OCD- tell me if I’m wrong.” I laughed and said, “Well, I’m a clarinet player, so I guess you’ve got me pegged- at least about the OCD part.” I do appreciate those doctors and nurses who don’t candy coat things- I want to know the truth so that I can better advocate for my mother.

I asked to speak again with the hospital caseworker about Hospice, and found our saving grace- while Medicare won’t pay for Hospice while Mom is in rehab, she has a year in a nursing home covered by an old supplement that she was wise enough to purchase and maintain. As long as room and board are covered, Hospice can step in. What a blessing that would be, for Mom and for me.

Dan visits with Mom.
Dan visits with Mom.

Mom said some disturbing things this afternoon. She began talking a lot about Heaven, asking me questions, finally saying she wouldn’t be going there, that she had been too mean and would be going to Hell. This broke my heart, as my mom is truly one of the most loving people I know. She wouldn’t listen to me, or to Dan when he came to visit at lunch, and continued to repeat that she had been bad. Mom was raised in the old fire and brimstone Baptist church of the South. I told her I didn’t believe in Hell, that Hell was what we created on Earth, that God was pure love and would never turn her away. I told her that if I had been a mother, I would hope that I could have been just like her, that I wouldn’t have changed a thing from my childhood. Still, sad shakes of her head from side to side. Again I wondered if the oxygen was affecting her thinking.

The wonderful Terre Johnson ministers to Mom.
The wonderful Terre Johnson ministers to Mom.

I wrote to a sweet friend of mine, Terre Johnson, who is the music director at Vestavia Hills Baptist Church, and also an ordained minister. Mom needed to speak to someone who understood her religious roots, and Terre’s gentle, loving nature was perfect to draw Mom out of her shell and let her release whatever demons were plaguing her. I left the room so that they could talk freely. Conversations between a soul and its maker are not something I need to be privy to. I just wanted her to have peace.

When Terre left, I spent over an hour with the palliative care resource nurse, Trudie. She was amazing, and it was the first time that I honestly felt like someone truly cared at the hospital, truly listened to my concerns about Mom and my hopes for her. We discussed Hospice, and ways of making Mom comfortable as her breathing becomes more and more difficult. Mom may be moved back to St. Martin’s in the next day or so, as they have now done training on the BiPap machine, and have ordered the equipment for Mom. At least there is comfort that, if this truly happens, she won’t have to deal with even more change by moving to a new facility.

Mom's special friend, her former home health care nurse, Theresa.
Mom’s special friend, her former home health care nurse, Theresa.

As I was preparing to leave for the evening, we received a very special visitor. Mom’s beloved home health care nurse who came to Princeton Towers for about a year, came to visit Mom. Mom had been asking for her, so I texted Theresa and asked her to come if she could. She is truly an angel- one of those people called to help others. She and Mom formed a special bond, and Mom reminds me every day that Theresa is to have her snowman collection when she is gone. As Theresa walked in the door, I immediately embraced her and we both began to cry. Mom’s face when she realized who was at the door was absolutely priceless- sheer joy.

I stayed another hour to visit with them, and had the nurse remove the mask so that they could talk for a while. I was touched by the tender love between these two; Theresa’s last name is also Williams, and I told her that we are sisters, as Mom loves her like a daughter. So many wonderful people have come into our lives, appearing again and again to bolster our spirits, reminding me of how much my mother is loved, how much I am loved. It is overwhelming at times, but in such a beautiful way.

I missed Dan’s evening yoga class, knowing that I needed to stay longer with mom, and because I can’t seem to get through the class without crying right now. I desperately need to get back to my healthy routines, but I feel frozen with lethargy, all of my energies conserved for my hospital vigil. Normal life will return some day, but not now.

Sushi date!
Sushi date!

I sent Dan a text, asking him what he wanted for dinner. His reply made me smile, “How about a sushi date?” He picked me up in front of the house, and whisked me off to our favorite sushi bar at Surin. We were both spent, but how wonderful to have this little pocket of normalcy, a bit of fun and connection. On one of our toughest days, Dan knew we needed a little something different. How in the world did I ever get so lucky to be with this man? I am nothing but grateful.

Sushi photo bomb...with our favorite sushi chef.
Sushi photo bomb…with our favorite sushi chef.

And so, life continues, as it always does. There will be highs and lows, good will come out of darkness, and love will always shine through. Time for me to head back to the hospital and hold Heavy D’s sweet hand for another day.

Here's to a better day!
Here’s to a better day!

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