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.