February Musings #2: Reliving the Hardship of Hospice

Mama would be in hospice at home a total of 9 days. After two days of many tender, loving moments with family and no significant complications, she’d start experiencing nausea and end up vomiting twice from her bed on day 3. That day was a year ago today.

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Mama’s room, a place of tranquility now.

This was on my mind pretty heavily for most of the day. I would actually end up sweeping and mopping her bedroom floor today because of it. The grief and restlessness motivating me to do so were clear. I went over the areas of the floor she vomited particularly well, though the floor wasn’t too dirty, since nobody enters that room now but me. And that’s just occasionally, mostly to open and close the blinds.

Overall, I’m thankful I’ve felt pretty good today, though. This is in stark contrast to how I felt for much of Monday, what was day 1 of hospice for mom. Those feelings of tremendous worry, fear, sadness and even some guilt that started to hit me when hospice day arrived reappeared, forcing me to relive it all over again.

My mind raced with tremendous stress and anxiety, on that day a year ago. Would the hospice staff and nurses be good and helpful? I heard of bad experiences with loved ones in hospice from friends and family. Even if they were decent, would my mom end up suffering too much in some way, still? Kidney failure is supposed to be one of the relatively easiest, painless ways to die, I was told. OK, but there’s still the matter of her serious mental illness. That was never successfully treated. I knew acute episodes were going to be inevitable. And the fact remained that she was coming home to die! I didn’t want mom to die! I fought so hard to protect her and keep her alive for so long!

On top of all this, we couldn’t even tell my mom she was coming home to die in hospice care. My mom wanted to live. She didn’t even believe she was really sick, due to her serious mental illness. For years, in fact, she regularly insisted that “devils” were attacking her organs and that she didn’t really even need medicine. I lied and told my mom that the new hospital bed, oxygen tank and medical support at home, all provided by the hospice, were just part of added support the hospital was giving us. Luckily, she didn’t question any of that.

Not being able to tell my mom, though, was to a large extent like a gut punch, the latest in a long history of gut punches. There was nothing else that could be done, though. Mom was suffering mightily. For months prior, she was declining markedly and becoming increasingly uncooperative and medically non-compliant. I knew the time was near and was actually frustrated that her doctors wouldn’t help me put together a plan for putting her into hospice. “She has the right to refuse treatment,” they’d say. I grew fearful that she’d end up dying of a heart attack at the house, perhaps alone or in my arms. Hospice was the more humane option, when all things were considered. I knew it was the right choice, as hard as it was.

The hospice staff and nurses ended up being wonderful. The nurses were exceptionally responsive, skilled and caring. They’d end up coming every day. What a blessing! We’d have some difficult times with my mom, but overall, things went as good as can be, considering the circumstances. And for that, I’m grateful.

But seeing my mama increasingly decline (slip away) was probably the hardest part for me. Day 3 was the marked start of that. From then on, every day, she’d get weaker and exhibit more symptoms that death (her transition) was nearing. She’d begin to lose her appetite. Her physical strength would begin to leave her. She’d start hallucinating pretty regularly, too. She’d become bed ridden. She’d start frothing at the mouth….

A small piece of pumpkin pie, I believe, was the last meal she’d have. She loved pumpkin pie. In hospice, patients are allowed to eat whatever they wanted, within limits. That was on day 5, I believe. My memory of events and the timeline do get a bit fuzzy. It’s the trauma, I’m told.

(To be continued)

 

February Musings #1: Mom Enters Hospice

February arrived with a wallop. I was instantaneously taken back to this time last year, the month my mama passed. The memories and flashbacks began occurring with a feeling of slight nausea. That hasn’t happened before, at least not since mama entered hospice the second week of February. 

As February approached, I’ve wanted to write a post on my yearlong journey with grief. All this has changed my mind. My emotions are raw enough right now. I need to be careful. I’ll be visiting enough memories and experiences naturally. I don’t need to immerse myself any further. 

Instead, I thought I’d post a bit of our hospice experience. I believe I still haven’t processed the time and events fully, so maybe this would help. Today, the 16th, was the day she entered hospice. It was initiated in the hospital. She had been admitted the day before, due to breathing complications. Mama had stopped dialysis and started experiencing more fluid retention, exacerbating her congestive heart failure.

As was usually the case, getting mom into hospice was fraught with immense stress and hospital/medical bullshit. Here’s a short recollection of how the decision was made…. by me:

A year ago today, the hospital gave me the authority to make decisions for mom. I had to put her into hospice. She had stopped dialysis and was increasingly medically non-compliant. It was a decision you never want to make. I didn’t hesitate when they asked what I wanted, though. Mama’s suffering was too great.

It was a bit fortuitous the way it played out. Top to bottom, authorities and health care workers gave her too much agency. “She has the right to decide/refuse treatment,” they’d say. On this day, her doctor and the hospital social worker were in the room with me together. That never happens.

The doctor walked in while I was talking to the social worker. At that point, the social worker was being super unprofessional, casually talking to me about how downhill San Francisco had gone. How dirty it is and how it “smells like pee.” I’m pretty sure I made her feel uncomfortable. The moment she walked into the room, minutes before, I told her what I was expecting from them.

Hospitals have traumatized me. I was hyper vigilant and told her my mom is not being released, until a plan is in place for her to be adequately taken care of, whether at our home or a nursing facility. The doctor walked in and, after a short conversation with me, straight up asked the social worker, “Does Josie have mental capacity to make decisions?” The social worker, without assessing my mom directly, said, to my relief and surprise, “No. She has a serious mental illness.”

The social worker only knew she had a SMI because I told her she did during our short conversation. She didn’t assess my mama directly like I believe she is required to do. Mama was, luckily, sleeping the whole conversation, just a few feet away. (Hospitals are dumb. Their staff will have conversations about their patients’ mental states right in front of them.)

Interestingly, many times in the past, even when authorities knew mom had a SMI, they still always hid behind their civil rights language and laws: “She has the Right to refuse,” they’d say. This even when she was clearly in a psychotic state.

When I look back, maybe it was God or the universe helping me and my family. Mama had been saying Moses was coming for her, after all….  (To be continued)fullsizeoutput_592

 

 

 

The Cold Has Arrived. I’m Back in My Lowest Days Again.

My mama passed away in late February, my birthday month and almost two years to the day I moved her in with me. The immense grief has gradually decreased, as I read and was told it would do. But some days, the grief, and the guilt and sadness associated with it, hit me intensely. It combines with my “PTSD.”

I say PTSD because of the intensity of the painful memories and feelings I experience and relive at times. Partly situational, there are a number of things that can trigger it. Most recently, it has been facilitated by the arrival of the cold weather.

The cold is a raw reminder of the time my mom was homeless, living in a car, for around two years. The whole ordeal was traumatizing and depressing. I would, in fact, be put on an anti-depressant for a short time then.

In the Central Valley of California, the weather is similar to that of a desert. In the summer, it gets hot, over 100 degrees many days. In the winter, it gets cold, into the 40s and below freezing at night.

Making it through the cold winter nights was very difficult for my mom. She would have to turn on the car and run the heater throughout the night. How I hoped the car engine or heater wouldn’t go out from her doing so! My mom was tough and, actually, didn’t complain much at all. But she’d of course ask for help at times.

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A letter from mom

In a letter she wrote, asking me if she could come live with me, she specifically mentioned the difficulty of surviving the cold. I bought her blankets and clothes to help and checked in on her regularly, but it wasn’t enough. She didn’t know, given her serious mental illness, but I suffered too.

I had tremendous trouble sleeping during cold nights, knowing my mom was out there. It was agony. And just stepping outside in the cold weather would strike me with dread and despair. The first winter my mom was homeless, I lost a lot of weight. By the second, my stress and anxiety reached the point that my doctor suggested I take a leave from my job.

The cold weather arrived a few weeks ago, freezing temperatures this past week. With it at times, the feelings and memories of those two years. Each time, I’m there again, in that time period, in a moment, seeing her and hearing her suffer in some way and feeling the dread, agony and heart break all over again.

If it’s not the cold directly, it’s seeing homeless people trying to survive it, like the woman I saw as I drove to work the other day. In a sleeping bag on the sidewalk, I noticed her as she sat up. She sprung up and made a facial expression of great discomfort and pain, mouth wide open, eyes closed, like a silent scream. That moment took me right back to my mom.

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Me and mom before Thanksgiving dinner at a Marie Callender’s in ’15.

At these times, and whenever the grief is great, I take deep breathes and try to remember all that I did to help and take care of my mom. That includes advocating for her fiercely when she was homeless. And I’d still visit her when I could, including for Thanksgiving. I’d usually take her to Marie Callender’s, her place of choice for the occasion.

In a few days, it will be the first Thanksgiving without my mama. I’ll miss her company. To help get through it, I’ll be spending it this year in the warmth and company of my extended family, my aunt (my mom’s sister) and cousins. It’s what my mama would want: warmth, instead of cold, connection, instead of estrangement, hope, instead of despair. I’m trying, mama.