No, Really. No Sugar

That's the name of this blog, right? and for a good reason, right? 

I'm sitting here, Thursday night, a few glasses of wine into the evening. 

Yep, you read that right - the very demon that has a hand in all this mess is prompting me to write:  unabashed, unvarnished truth:

This sucks. All of it sucks. 

Dad has Parkinson's. It causes all kinds of problems. Those problems have plagued my parents for years. Sometimes he's fine. Sometimes, he's terrible. The day-to-day never changes, and yet the edge remains: will he pass out and need the smelling salts, smacking, cold washcloths, more meds, time ... to get him up off the bedpan and into his "brief" and into the recliner where he spends his life? 

Will the aide be able to manipulate him into the wheelchair/recliner without incident? or will his body betray him and cause chaos? 

Will he be cogent, when awake, and speak freely and friendly-ly about all things past and present? or will he think there's a chapel at the end of the house, an iron-wrought train track into the fairgrounds with a projection of our living room, or an extra apartment beside the house, where other people live? Will he obsess about the donuts that are downstairs that he retrieved on his way from work (he hasn't left the house in 5 years), or will he talk to whomever listens about photography, work experiences, college life, etc.? Will she be aloof, trying to just "be" in her current circumstance, or will she be angry, frustrated and resentful? Will the Food Network distract and ease her inner pain, or will it amplify the tediousness that is her life? Will she text her daughter with the truth about how she's feeling, or will she Sheraw it up and say things are "fine"? 

I haven't been to the hospital in a few days. I haven't been to the house since "The Incident". I've been doing things here, sure, and seeing my daughter off on a grand adventure, but should I have been in those other places instead? I spent quite a few weeks away from my kids while their dad withered in the hospital ... they're older now, with more understanding ... what is my role, as the only child of ailing parents and the only parent to two young adults? 

He's sad, he's depressed, he blames himself. For her injury? for her despair? for his own illness? All understandable. 

I don't want to face the inevitable. The thing I've been saying for years: if something happens to her (as it does, often, with caregivers), I'll be in an impossible position of caring for them both, in different arenas.

And yet here we are. The foreseen has come to pass. 

Today Ian's mom (whom I will always refer to as my mother-in-law, btw) and her husband spent the afternoon with him where a shift of aide workers could not be filled. He's not been eating today -- depressed? frustrated with his shakiness when attempting to eat? who knows -- but they have been a positive influence to his day. Yet upon the daily attending to his biological needs, my son was needed to hoist him from his chair. 

It's becoming untenable. 

I know this. 

When do I send him away to a "senior storage facility" (his words)? How long do I allow him to stay in the home he built, with my mother, while waiting for her (possible) return? What do the next months hold? How do I encourage her rehabilitation and improvement while dealing with his decline and immobility? 

I have no answers. It's all questions. It's all jumbled. It's all so hard. And that is all I have. 

Monday Morning Update

It's been a busy weekend of coordinating. 

Dad's 24-hour coverage at home has been organized, with only a few gaps. 

I have a good understanding, I believe, of all bills and such. 

I'm working on getting in touch with doctors, etc. 

The buried lead: Mom's okay. 

Define okay? I got to see her. She was miles better in appearance and spirits than when I left her in the ER early Saturday morning. Her pain is being managed. The ICU staff is excellent and careful and attending to her every need. 

She was able to FaceTime with dad. 

What else? The burning questions - what are her physical limitations? what might she regain? How does the future look? 

I know better than to allow us to get ahead of ourselves, so here's what we DO know, at this very moment: 

Her breathing tube was removed and she's breathing fine on her own. She does have some added oxygen (nose tubes, yay!), but all of that is stable. She is not sedated.

They are keeping her blood pressure HIGH, to increase blood flow to the spine, so that's being carefully monitored in the ICU. 

On Sunday morning, the PT crew came in, and according to mom, she was able to either push or kick against their hands with her leg. I was shocked to hear this. She said she can't FEEL her legs, but she was able to move one? Astounding. 

While I was there to visit, her legs moved, unbeknownst to her. I brought it to her attention, and asked her to move one of them on purpose - and there WAS movement.

She's able to move her arms freely. Her hands are very swollen, from just general nerves/injury and/or medications/fluids onboard. It is unclear her ability to grasp or feel with her hands at this point, but I didn't press to determine any of that, given their current state. 

Yesterday her brother, Audrey and I were able to visit with her. She is 100% cogent. She is even gaining a bit of memory of what happened Saturday morning ... bits anyway. She remembers standing and tripping over the blanket that was in her lap when it fell to the floor. I have yet to be at the house to recreate the scene in my mind, but a picture is becoming clearer. Not that it matters, much.

Yesterday Ian's mother, Carol, came over anyway, and we ate the food I had ordered and admired the flowers. Then she and Ezra went over to be with my dad while Audrey and I went to the city. It was a blessing to have the company, and I was finally able to eat something. 

Today: there is more coordination to be done. More boxes to check, things to confirm, things to schedule. Ezra took the day off of school to "hold down the Ranch" (their home) while I work to coordinate more things from home. Mom has visitors scheduled for today, for which I'm sure she will be grateful. The nurse said they would be putting her in The Chair later today - it's a stretcher chair, and I am very familiar with it. I have a horrible photo of Ian in that same chair, but it's necessary for blood flow and healing for patients to be upright for some time during the day. It will be good for her, even though it may cause additional pain/discomfort. 

She's not eating yet - she will have to be "checked off" to do that by the Speech/OT folks and the doctor. But she's not hungry, either, so she's not stressing the not eating thing. 

I would say her spirits are average; she's not wallowing, but she's not cheerful. She did have good conversation with all of us, covering non-serious topics of the past, present and future. I will say that at some point in the conversation, she noted that she was wearing The Cone of Shame 😆.

She is able to receive guests. She is not sedated, but she is on some pain medication. The nurse said they like to keep patients awake for most of the day when possible, so if anyone wants to visit, please let me know and I will be sure you have the information needed. 

How am I? I've had my pity party, my bouts of sadness, and now I'm in caregiver mode. It was very good to see her yesterday and to have a better picture of her in my mind than I had in the ER. I am very, very busy, coordinating and such, and that's probably a good thing. We have no idea what the future holds, but we do know some of the decisions that will need to be made, and none of them are pleasant. 

If you've made it this far, here's your reward: a mother's day selfie: 

I don't think her nose is broken;
the mark is from her glasses.

Blogging Again: An Unhappy Mother’s Day

 

A: You should blog again

Me: Well, there’s been quite a gap, since your dad died. It was kind of about that for a long time.

A: Yes, but your writing is good

Me: ….

——————

Mother’s Day, 2025

Today was going to be a special brunch for the special moms in my life: my mother and Ian’s mother. We were going to spend the day snacking and chatting. I had food and flowers and sweets and heartfelt notes and a playlist. 

Friday night, I got a call from my dad, saying they needed an ambulance. 

I called and sent them out, not knowing what was happening … but hearing my mother groaning in the background. 

He called again to say she was having trouble breathing. I called 911 again to update them. 

I called my mother’s neighbor to have her run over. I’m 30 minutes away. 

I need to back up to add: my dad has Parkinson’s. He had many years of mainly altered gait and difficulty rising, requiring some help from mom in doing so. For the most part, he could transfer himself to a wheelchair and/or motorized chair and attend to his basic functions. 

Then one day he fell and broke his hip. 

Then came surgery, recovery and rehab. There was little pain, but a marked decline in mobility. Now with loss of strength, it was very difficult for him to rise and transfer, and of course the fear of another fall. So my parents employed a team of aids to come in twice a day to help with hygiene and light housekeeping. 

This has been the case for several years. Unfortunately, aside from Parkinson’s, my dad suffers from orthostatic hypotension and vagus nerve response. Translation: he passes out upon rising. Because his legs already don’t want to cooperate, this can lead to a flurry of chaos and danger. His blood pressure is closely monitored prior to rising, but it’s not always a good predictor of the day to come. Sometimes when transferring to his electrical recliner at the end of the day, his functions fail him and this presents great difficulty for the aid and my mother. Sometimes this requires a call to the fire deparment for a lift assist. Sometimes it leads to him slumping to the floor, making that whole process much more difficult and stressful. 

In short: my dad doesn’t get up on his own. My mom is, and has been, 100% responsible for monitoring and feeding him and coordinating the help coming in twice a day to assist. 

It’s been a long few years for her. She has been living “Groundhog Day,” trapped and resentful of the life that has forced itself upon her. Her deep love of my dad and sense of responsibility are coupled with sadness, overwhelm and depression. 

It’s not unexpected nor unreasonable that she resort to self-medicating the deep sadness and anxiety that plagues her. 

Returning to Friday night: at some point, the wine consumption had tipped the scales to excess. Earlier that evening had been the call to 911 to lift a puddle of my dad from the floor after a bad transfer. Whether the wine had flowed mightily preceding the incident, or as a result, we can’t be sure. 

What we do know (and even that is muddled, given my father’s having been asleep and sometimes muddled mental state) is that at some point, mom fell. She became tangled in cords and chargers and met the floor in a violent way. 

The call from my dad was after repeated attempts to have Siri or Alexa call 911 to no avail; and thank God he was able to connect with me. 

Living very close to the medical center, I sat tight while my neighbor narrated the scene. The EMTs had arrived, and with significant difficulty had loaded her and were on their way. This left a very agitated and worried dad at home, alone, and so my neighbor graciously stayed the night. 

When I got to the hospital, my mother was moaning, in agony. Her arms flopped up. She had a hard time catching her breath. She was panicked, bloody (nose seemingly broken), and … politely … altered. Her blood alcohol content was high. 

I did what I could to ease and relax her. There was nothing to be done; they couldn’t administer pain medication, they had to do testing, and things were dire. They put her in a neck brace. This created more pain and anxiety. Her back, which on a good day causes her continued pain, was on fire as she was laid flat, something she cannot do normally. 

And she couldn’t feel her legs.

Upon closer examination, she couldn’t feel her stomach, either. All the way to the breastbone she was without any feeling. 

I could see the concern in the doctor’s eyes. (Side note: I’ve dealt with MANY doctors. This young man is exceptional, both in diagnosis and bedside manner). The lack of any sensation meant certain spinal cord injury.

The decision was made to fly her to The Big City’s trauma center. And so to the chopper she went. 

The news is this: she has a fracture of the C5 and C6 vertebrae (neck). Hyperextension (whiplash) as a result of the fall (not likely to any impact) has produced swelling in an already narrow (congenital and degenerative) spinal column. 

The result: my mother will not walk again. 

She’s spent years going from bed to computer chair, tending to my father’s needs and doing nothing for herself. Leaving the house has been limited to times the aids were there and she could run to get groceries. Albeit a chore for many people, my mom enjoys cooking, and can make magical meals from the most basic things. 

And now she lies in a hospital, intubated and sedated, following a surgery to decompress and stabilize her spine. Upon waking, she will re-learn that despite a successful surgery, she will even less be able to fully participate in life. Do anything for herself. Experience freedom and joy. 

My heart breaks for my mother. 

My heart hurts for myself. I despair the months to come - hospital visits, care coordination for both parents, overseeing a second household of bills, upkeep and utilities. And the larger decisions that will need to be made in the future loom and itch and form a messy cloud of angst. 

This was supposed to be a lovely Sunday Mother’s Day brunch.