Home again

On July 11, 2024, my mother left home for the last time.
On August 25, 2024, she died in the night in a nursing home.
On September 10, 2024, she returned home in a black box of ashes.

I know the ashes are not the person. What cruelty it is to have ash as the substitute.
I believe the spirit or energy of my mother lives on in some way.
I believe energy is never lost, and that hers and mine will recombine, eventually.

Every day, I cry. What cruelty it is to have tears as the evidence of love.
I have done all that can be done and must accept eternity's fate. 
Now I must calculate how to fulfill the command - honor thy mother.

May her energy live on in the hearts of those who loved her.
May our tears wane and joy return.
May she rest in peace.

Unresponsive

"She's in the ER and unresponsive," the caller said.
It was 30 minutes until the first class meeting of the semester.
I chose my mother over my students.
I forgot to get my driving glasses; reading glasses will have to do.
When I arrived at the ER Cardiac room, she was just lying there. 
I put her hand in mine, she opened her eyes,
Her look was shock and surprise, then the eyes went to a smile,
Then back to unresponsive.
The monitor above beeped as her heart rate dropped to the 60s,
Then a few minutes later rose to 130s, then down again.
For two hours I held her hand, stroking her fragile bruised skin.
Suddenly she woke up, fully, asking where she was.
Asking why she was there. I called the nurse.
She said she was dreaming of being chased.
She didn't know who was chasing her.
The nurse and doctor came; she joked, she obfuscated.
She slurred her words. She didn't know my name.
The tests all came back negative - no stroke, no heart attack.
There is no explanation for her becoming unresponsive.
The decision is made to send her back to the nursing home.
She wants to come to my house - not the nursing home.

I'm sorry, mom, but that won't work.

She wants me to stay with her in the transport van.

I'm sorry, mom, but I can't.
It takes three nurses using a Hoyer to move her. 
Two hours later, she no longer has the ability to talk;
She tries finger spelling, but we don't understand.
As she moans and cries in pain, we have to leave.
I'm sorry, mom, I cry as I drive away.

How much more can she or I take?

Hardest Things

Among the hardest things I've ever had to do are: 

• Finding out that I had said goodbye to my sister for the very last time, wishing for one more chance.
• Leaving my daughter at her university two hours from home and just driving away.
• Walking two miles to the hospital after finding out that my son was seriously injured in an auto accident.
• Seeing my father, my rock, the emotionally strongest person I have ever known, reduced by Lewy Body dementia. 
• Holding my mother's hand, counting the breaths, and lying to my mother, telling her that we would be okay when she dies.   

The hardest things we do, the most painful memories we experience, are about family -- about missing them. Remember that. There is no job to go to, no bill to pay, no home renovation to do, no offense to be carried, no guilt to hide behind, there is nothing more important than family.

Watching, Waiting

There is no feeling I've ever experienced like sitting on the edge of my mother's bed in the nursing home as she pulls her hand out from beneath the burnt orange covers just to hold my hand. I can't remember the last time we held hands. We stay in that position for 45 minutes - almost nothing said the entire time.

She's unable to speak clearly. Her eyes stay closed. 

She asks, "Where am I?" 

(She has lost her sense of place - I remind her of the facility and city)

She asks, "Why am I here?" 

(She wants to understand what is going on - this is where you can rest)

She asks, "Second?" 

(She wants to know if there is another person in the room - yes mom)

She licks her dry lips 

(She wants lip balm applied so I paint her lips as the scent of cherry rises).

I watch, her eyes closed, as she struggles to breathe.

I watch, each breath raising her chest a fraction.

I watch, as she pauses before her next breath, wondering if her last has already passed.

I watch, as her eyes flutter, her brow furrows as she's deep in thought.

I watch, as a smile crosses her dry lips.

Death feels so very close, in the room. 

I pull out my phone to see the time ... so I can tell family what time she died.

She breathes another breath.

I imagine saying, "Yes, I was with her, holding her hand."

She breathes another breath.

I look for the nurse call button ... so I'm prepared for that moment when she passes.

She opens her eyes, with a loving gaze and smile, and softly tells me it is time for me to go. 

I remember an earlier conversation when she said she doesn't want me to see her die.

I tell her I will see her tomorrow. 

"Will you?" she asks, a hint of hopefulness in her gaze.

"I will," I say, but feel like I'm lying to her. 

I choke up, tears leaking, as I walk out to the car. 

She breathes another breath.

Where Can I Turn for Peace?

Leaving Home

 Thursday night, my mother left home for perhaps the last time. 

She said she didn't want to die in front of me and asked to go to the hospital, eventually landing in room 410. 

Friday night, she begged to leave the hospital to go home. She couldn't remember where her home was but she wanted to be in the comfort of her own home. She begged.

Friday during the day we learned she has about 20 nodules growing inside her lungs -- it is uncertain if any are cancerous ... and at her age, they won't do any biopsies. She is going to die.

Friday morning we visited a nursing home for her to move into. It's new construction and seems friendly -- but she can't move in for three days. The hospital may release her in two days, though, meaning she would have to come to our home for about 36 hours at the least. I don't know how to emotionally handle this anymore.

Friday evening the person in room 412 had a steady flow of family members visiting, laughing, and socializing. My mother asked where her family was, why they weren't there and when they were coming. We had to tell her nobody was coming ... it was just us. She became angry. I cried.

Friday evening she asked me to pay the medical bills of everyone there -- all the people on that floor that the nurses were so busy helping. I told her I would pay what I could. She asked me to pay the bill for her dinner (pointing to the hospital menu slip of paper) and to leave a good tip. I tried to explain they would include her dinner on the hospital bill and we didn't need to pay right now. I don't think she understood. Generous to the end.

Friday evening a family member emailed, asking to not be called when she dies. There are no words.

There are no words to express the grief I feel. My cardiologist was kind enough this week to share with me takotsubo cardiomyopathy. Now, as my heart breaks, my mind slips into fear.

p.s. As the paramedics were loading my mother into the ambulance, I got a heartbreaking email from another family member in crisis. I quickly sent an economic bandaid, but haven't processed how to help. If we grow stronger through our trials, then we shall be stronger.

p.p.s. On Monday, the day I likely have to move my mother into a nursing home, I have to put on a smiling face and entertain some youth in our video production and radio studios. Then I do it again the next day for four groups of middle schoolers. 

Going Home

 I've been reading a lot lately about dealing with dementia-related requests to "go home".  We deal with this on almost a daily basis with my 95-year-old mother. When she demands to go home, even begins crying because we won't take her home to her own bed in her own room, it is heartbreaking. When she tells us that she has to get out of here because this isn't where she's supposed to be, it feels like negating the sacrifice of the last 18 years of her living with us. 

I can deal with the incontinence, changing the bed almost every day, helping her with her adult diapers and bathroom duties. I can deal with a lot -- that's what loving a mother is all about. 

I can even deal with the 3 or 4 a.m. calls for help, waking us from a deep sleep just to find out that her blanket fell off the bed and she needs it pulled back up. I can deal with being exhausted all day long as a consequence of the early morning demands for attention.

What is hard to deal with is the sense that I'm not doing enough. I've tried to make our house a home for her, bending over backwards (sometimes too much, according to my wife) to keep her comfortable, fed, clean, etc. To be told that she isn't "home" hurts. 

 I've tried to find out what "home" is to her -- is it Mount Pleasant, LaVista, Omaha, Johnny Creek, Delano, ... even back to 23rd Street. She doesn't know (another of the most frustrating issues of dementia is her answer to every question is "I don't know"). As I read about this wanting-to-go-home feature of dementia, I learn that "home" isn't likely a place for her as much as it is a feeling of security, of comfort, of peace. She's longing for that -- and as hard as it is, given the lack of logical processing in her brain, we have to accept that sometimes she doesn't feel home. But home is not here. It isn't a place.

In those moments, we have to restore her sense of security, of comfort, of peace. Since she can't verbalize what is making her uncomfortable, it's a lot like guessing why an infant is crying -- an impossible situation. I don't know how to make her feel at home, but I will keep trying. 

Barbara's Birthday

I did something last night that I probably should not have done – to remember my sister Barbara, for her birthday today, I listened to the audio recording of her memorial service. The emotions of loss come back as do the tears and the pain. With the angel of death casting his shadow over my home even today, it was difficult to listen to the recording. But I was also strengthened by a few of her personality traits.

Ann Price holding Barbara Price, 1951.

She was always courageous, from birth. At age 4, she walked about three miles across town, without her parents’ knowledge, to visit her aunt. She was an early adopter of many technologies. When she moved out of her parents' home, she didn’t leave as a rebel – she left home in tears because she felt she needed to take on life herself. In her final days, she went Christmas shopping, one store per day because that’s all the strength she had as she was pushed in a wheelchair by my mother. She believed, right up to the end that she would return to her work family. Her death came quickly, less than 15 hours from entering hospice care.

She was a trailblazer. She was the first to protest when women were denied positions in the railroad. She worked the overnight shift checking cars in the railroad yards of Pocatello – the first woman to do that. She was the first female train dispatcher in the history of the Union Pacific Railroad. She fought hard for other women to find their place in the workplace. She was instrumental in opening the largest training system at the railroad.

She was undaunted. Since her education was paid for by the railroad, she took every undergraduate course available at Idaho State University – she never graduated but accumulated several hundred credits. She was so educated that she could converse with anyone on just about any topic. She was a master at knitting and quilting.

Perhaps I can learn to be more like my sister.