Diane's story, Part 1: settle in for a long one

Diane & I met in 2013 at UUMAC: the Unitarian Universalist Mid-Atlantic Community, a yearly camp for UUs. In 2013 she was doing a metaphysical workshop, a weeklong morning session that followed morning worship. We immediately bonded over our metaphysical interests, tie-dye, crystals and weird senses of humor. I'm no slouch in the metaphysical-energy department, but Diane's abilities were leaps & bounds ahead of mine: seeing people's auras, spirit animals, ancestors around them, energy working.... I was more than a little in awe of her. 

At that time Diane was living & working in Cape Cod as an Occupational Therapist. Loving the area I happily visited her several times. Diane had been diagnosed with breast cancer before we had met, was already outside the 5-year point where she was considered ‘cured’. This meant we also bonded over life-threatening medical issues which had forced us to confront our mortality while in our 40s, an automatic deeply bonding commonality. We became close friends.

When making the decision in 2017 to move back to Bucks County you may remember that my mother fell and fractured her pelvis in 3 places. In that time of coping with renovating my house, moving, selling the Phoenixville house, my mother's deteriorating health, needing to handle everything for her, including moving her to assisted living, Diane received the news that she once again had breast cancer. She chose not to tell me, especially since it was a 'mild' case, ie felt to be easily treated. I never knew all the details, because everything was 'fine' by the time she told me, at least a year later. 

A couple years after that Diane decided to move to the Baltimore area for multiple reasons: her son lived & worked there, plus quite a few people from UUMAC lived in that area, giving her a built-in support system. It also lead to her re-connecting with her son's other mother, her former partner, who I'll call 'J'. Shortly after moving there she found out that the cancer had returned with a vengeance--it had metastasized widely, including liver, bone & brain. Diane knew this was a terminal diagnosis, but cancer treatment had improved so much she also knew she probably had several years more of life. 

While the chemo was controlling the cancer in her body the tumors in her brain started growing. Diane had told me previously she wouldn't do any extreme treatment with her entire body filled with cancer, so I was rather surprised when she decided to get radiation to her brain. Her thought process was since the cancer was so well controlled in her body it was worth getting the brain radiation. I’d seen patients go through this, but never had seen it up close, and it was absolutely brutal. The tumors were in her cerebellum (lower part of the brain, controls balance), and more on right than left, so the radiation concentrated there. She had visible burns on her bald head, but other changes were harder to handle. Her hearing drastically diminished (and never completely returned) plus she had ringing in her ears, and food wasn't just tasteless, it tasted horrible. She went through over a year of lack of any interest in food, made more difficult by her multiple pre-existing food allergies. There was also a lot of dizziness. Yet, she continued on with the treatment, in hopes of extending her life. She really wanted to see her son settled, and desperately wanted grandchildren. But despite the brain radiation & the chemo to extend her life it was clear that sooner or later the cancer would win.

Diane had spent her life working in medicine, for decades as an OT and then as a case manager. As an OT she was involved with patients who were on hospice, and saw their pain & struggles. Knowing that she would be facing death, and familiar with what the end of her life would most likely look like, Diane decided to take control. She started advocating with the organization Compassion & Choices (C&C) to get MAiD: Medical Aid in Dying passed in both Maryland & Delaware. Please see my post, Nov 27, 2022, about my mother’s death for more insight into why MAiD is so important: it’s not for everyone, but it should be available for those who meet the narrow requirements, to give them a choice to die on their own terms instead of tortuous suffering for themselves and their families at the end of their lives. Diane was living in MD, but she registered her car at J's in DE. That meant she had a foot in both states, and if either state passed MAiD she had the residential requirement covered.

As soon as I became an End of Life Doula Diane asked me to be with her at the end of her life, preferably the last two weeks. She knew my medical knowledge would be helpful, and she also knew I had the ability one has to learn in medicine: to compartmentalize, be clinical and not emotional.  She also knew I would protect her son & J as much as possible. I think she would have asked me anyway, but once I became a Doula it was easier to explain to her son & J why she wanted me there, outside of our friendship. It was, as always for her, pragmatic, and she knew me well enough to know my priority would be her wishes.

In May 2024 Diane texted me and asked me to come down and help her decide who to give her beloved crystals and other belongings to in anticipation of her death. She didn't volunteer if she had a feeling the end was coming, and I knew better than to ask. As open as Diane was with me about her feelings she didn't love talking about events leading up to her death or afterward. As often happens she had diametrically different reactions: she'd done her cremation planning but was not open with planning her memorial, she asked me if it would be weird if she wrote her own eulogy (NO, it would not--do it!!) but never did so, didn't write her obituary when I'd suggested. Generally she'd let me get a couple questions in, ie what hymns, who to contact, but then she wouldn't answer or change the subject, because even when you're pragmatic it's still difficult to discuss the nitty-gritty about your death. But she was ready to give away her crystals, and that told me a lot. 

For several months I went down for a few days to help her get rid of things, and she would casually tell me she expected me to take her crystals, lots of tie-dye, UU stuff...and anything else I wanted, expecting her son would want help coping with getting rid of an apartment full of stuff. When I asked if she had told her son or J that she wanted and expected me to have a bunch of her things she replied  'Uhhh--no, guess I haven't.....'  She was comfortable talking to me about her death, but it was different with her son and former partner--that made it more real. Especially her son, who, despite that he was 30 yo she still wanted to protect, didn’t want to tell him how bad things were. Since I'm not a parent I typically refrain from saying anything about someone’s parenting decisions, but I did tell her my opinion that he deserved to know the truth about how seriously ill she was getting and about how she wanted things handled before, during and after her death. But she wanted his memories of her to be positive, to have fun experiences with her, not be thinking about her dying. She chose to keep a lot of things from him, which meant he wasn't prepared when things got worse. 

As it moved into fall the plan was for her to finish her lease at the Baltimore apt April 30, 2025, and move in with J in DE. Understandably J didn't want Diane's entire apartment full of stuff (plus a large storage locker), and Diane said it was helpful having me there, although in all honesty we didn't make a lot of progress. She wasn’t really willing to admit she was going to die sooner rather than later, and resisted it in many ways. Example: in her front closet, taking up a lot of space, was a motorcycle helmet. I said to her 'Let's be realistic: you are never going to ride a motorcycle again.' She agreed, yet wouldn't give up the helmet,  telling me that she would wear it during kayaking to protect her skull. Exasperated at her stubbornness I pointed out that if she went under with this heavy helmet she'd be virtually guaranteed to drown, but she refused to let it go. 

I felt a shift in our relationship once we started dealing with the very practical and real aspects of her dying. Now I wasn't just a close friend, but represented the reality that she would die. While knowing that she trusted me more than anyone with these details it was hard to be the one who she now associated with her end, that her feelings towards me were mixed with the anger & resentment one feels when one is walking towards the precipice of death. But I also understood, because it was two decades ago that I was taking that walk, and even with the distance of 20 years you don't forget those emotions. They don't always make sense, but how can everything be 'normal' when you are facing your death? 

After years of constantly beating the odds, and living about three years past the date the oncologists predicted she would die, Diane started to worsen last fall and into early winter. We talked & texted frequently, plus we were both late night people and would talk at 11:00 pm or midnight. I made sure that I never gave my opinion on her decisions, because they were her decisions, not mine. She was still working with C&C, testifying in front of both legislatures, but by the end of the fall 2024 session it wasn't legal in either state. Diane was devastated, in no small part because she saw this legislation as her legacy. And she was clearly failing. 

At the end of November/early December Diane started falling more, was very off-balance. By this time my foot was broken, and it was frustrating that I couldn't help with anything or see her in person, assess her condition for myself. It became obvious that the timeline of her moving in with J now needed to be moved forward, couldn't wait for another few months. She started spending more & more time at J's, while still going to Baltimore for chemo. 

Diane had, in the past, sent me her MRI results, but she hadn't in months because she no longer could figure out how to access the patient portal. What she did tell all of us was that the tumors were increasing in both size and number--not good. In early December she discussed with me the possibility that the brain tumors had invaded her CSF (cerebral spinal fluid), which would rapidly decrease her life expectancy. Medical explanation: there is a difference between having brain tumors, which are encased, vs having cancer invading your brain cells and CSF. Tumors grow, and squeeze normal brain tissue, since it’s all encased in the skull, and as the space gets tighter symptoms increase. But if the cancer cells are in brain tissue it advances much more quickly. It made sense that it was in her brain, since she was rapidly deteriorating neurologically, falling more, having to use a rollator all the time. She made the decision to get a lumbar puncture to decide, and I asked what the treatment would be for that if positive. She said the oncologist had explained that she would stop her current chemo, get a port put in on the top of her head so the chemo could be directly given into the meninges, but the oncologist warned her that the treatment usually didn't work. To me it sounded perfectly horrible, and not at all what Diane from a year ago would have even considered. In a very neutral tone I asked 'So, what are your thoughts about doing that?', her response was 'I'd do it--I'm not ready to die yet.' There is a very large difference in looking at your death from a distance as opposed to weeks.  

In anticipation of positive results, as her symptoms had gotten so much worse, Diane arranged for a party of her closest friends on January 4th. She told me that it would either be an 'I'm moving to southern Delaware and don't expect anyone but Laurie to come down there' or 'I'm dying soon, so this is goodbye'. Her blunt, pragmatic reaction was typical. But I still couldn't get her to write her eulogy or tell me what readings she wanted at a memorial service. 

I was at Aunt Beth's for the holidays, so she & my cousins could help me stay entirely non-weight bearing. Thanks to my cousin Susan I got to the Jan 4 party, and knew everyone but a tall blond woman who identified herself as a reporter for Delaware OnLine, a news agency who reported on events in the state. She had approached Diane after seeing her testify at the DE legislature and asked if she could follow her story, including the end. What's funny is that Diane hadn't shared this rather important with her son, J or me: the three people who would be most involved in her last days. Her son & I both liked Isabel, whose mother died several years ago of breast cancer, which was when she got interested in MAiD and following the bill through the Delaware legislature. 

I asked Diane what had prompted her to allow a reporter follow her through such a difficult time, and her response was 'Because I want my death to mean something.'  She also said that she wanted Isabel to know everything, and I made sure to qualify exactly what 'everything' meant to Diane, and it included following her through to the end, including being unconscious and, if it happened, being present as and after she died. Getting her story out, with the hopes that it would help others, and hopefully get the legislation passed, is what was important to Diane. I asked her about my writing this on my blog (not that anyone but Deneen reads anymore), and she said 'yes', so, this is the reason for this lengthily post. It's also because I need to vent, and you'll soon understand why.

Going to take a break now, before relating the last several weeks.

First: Update on me

 Will be posting someone else's story soon, should have already done that. 

Deneen: Part of my reason for not publishing is there no way to tell my story without making my bosses look really, really bad. At some point....

Since the stress fracture of my left foot--fourth fracture--I've never been without pain. But the ortho podiatrist assured me that it was ok for me to walk on it, despite the pain. I had worked my way back up to 9-10K steps a day, outside, plus inside. Was getting rid of stuff in my garage, making progress clearing out and becoming more organized. There was one pair of sneakers that didn't hurt, they were the ones with the most 'give'. But hey, what's some pain?

Nov 20, while negotiating around the end of the recliner so as not to disturb Spice, I stepped on one of his toys. Trapped between the coffee table with breakable stuff plus glass inserts and the bookcase there was nothing I could use to stop my fall. I heard and felt the bone break as I landed. At that point my concern was that it was comminuted--fractured in pieces, difficult in the best of circumstances but virtually impossible to heal in that area. 

Called my neighbor, had to make it out to my car to drive to my storage unit as she would not have been able to find, sent her in to get the knee scooter. I'd been keeping it right at the door, knowing that it had to be in the front if needed, ironically I'd just been there the day before. Got appt with ortho PA for the following day, found someone who could not only take me but could lift the scooter in & out of their car repeatedly. Then I ordered an 'all terrain' knee scooter, which I think is ridiculous because who's going four wheeling with a foot injury? But it had larger wheels, and the original one felt pretty unstable with any floor or street irregularity. 

X-ray was, of course, positive, but thankfully it's a straight break, right where the stress fracture was, confirming that despite months of staying off of it and babying it probably wasn't fully healed and wasn't going to be. It's called a Jones fracture, notorious for difficulty with healing since it's an area with poor blood supply. And, in case you've lost track: fracture #5 of the left foot, and #3 in the 5th metatarsal. 

Was very glad of getting the heavier scooter: it's much sturdier, although it also weighs more. Aunt Beth invited me down for 3-4 weeks for Christmas, she's also in a one floor cottage, in retirement community, plus with family nearby coming over often. Was completely non-weight bearing for 7 weeks, appt Jan 7 with surgical podiatrist and the X-rays could have been interchangeable--no healing. Decided on really the only option: surgery. You can look it up, it's a rather medieval looking long screw that goes the entire length of the bone. It's how they treat pro-athletes.

Surgery Jan 22, it's now coming up on 4 weeks of continual non-weight bearing, which has gotten really old after THREE MONTHS. Several people have cooked with me or for me, and my neighbor Linda has been here every single day there wasn't someone else here. While I can get around fairly well (and have had lots of practice) there is no way to get my mail, get packages inside, get anything from the garage (did get a ramp installed, but it's steeper so could fit in without affecting car), and clean out the litter box and do Spice's food. She also hangs out when I shower as well. Had grips installed at both doors, ramp into garage and handheld shower wand.

It'll be four weeks in two days, I'm going to double check that I can walk on it a bit, already have two weeks of PT scheduled, but doesn't start until March 3. I did bear weight for a couple short times when standing and am disheartened that it's a bit painful. But a friend who had a plate put in her wrist said it was a full year until she didn't have pain. 

So, back to the couch and have it raised, it's been down for several hours and that still makes a difference, unfortunately. I am keeping very positive that this is going to heal and allow me to resume the function I had back in fall 2022. 

20 year anniversary

 Today is the anniversary of the day that saved my life while ruining so many things in my life. Heart wise I'm stable, the autoimmune causes more issues on a minute-to-minute basis. Chest has hurt every day for 20 years, mostly just simmering in the background, but taking little to flair. Still can't lay flat, make my bed or open a window without pain. Clearly, it will never go away. 

Last year, my 60th birthday, I decided to do something that had been thinking about for years. I got a tattoo on the scar, outlining the shape. It's supposed to look like kintsugi, the Japanese way of mending broken pottery with gold, showing both that the dish/me was broken, but had the strength to put it/me back together, with the gold making it/me more valuable for having had the experience. I was warned that scar tissue doesn't tattoo well. Had the entire scar and the 3 holes from the chest tube done and, unfortunately, it does not look like kintsugi. But it did make it more obvious, and that was the secondary reason to have it done, because the scar was so minimal that most people couldn't find it even when they knew it was there. And I needed something on the outside to reflect the trauma done on the inside. Many people, especially women, would have been happy at an almost invisible scar, but, for me, there needed to be something that showed more obviously what I'd been through. It's faded in a year and a half, but it's made the scar much more prominent. I'm glad to have had it done, it had been a thought for years. If I'm going to have pain from the surgery every day then it needs to be seen, damnit.

Otherwise, I'm sorry to say that there have been no new epiphanies. What was surprising was my not needing to do anything huge to mark the date--is that progress? I did give myself the day off, slept in with Spice curled up with me, but then started doing things around the house. 

If anyone is seeing this for the first time (doubtful), please refer back to post Oct 15, 2019, which was the 15 year anniversary. In that post I give full history and refer to other posts should more detail be needed by a new reader. I never contacted T, maybe next year? 

While always staying busy, right now with finally clearing crap out, I stay home at least 3-4 days a week, and a couple weeks ago went for 8 days without going anywhere. And yet I'm always behind!

Have to take a shower and do my weekly infusion of Hizentra, which is a bottle of other people's immunoglobins, since the autoimmune disease or the treatment dangerously lowered them, making me much more likely to get ill. Believe that somewhere back in all this writing that the immunologist said that if I hadn't already been on disability for my heart she would have told me to stop working because of my lack of immunity. Since I've been on it, for about 6 years, have only had one major URI, so it's clearly working. Isn't pleasant, but it is what it is--one of my repeated phrases along with 'everything is relative'. 

Hi, Deneen! Would be surprised if anyone else checks in, please leave a note. 

Blessed be, Laurie

The year anniversary of my mother's death

Today is the one year anniversary of my mother's death, and if you have been reading this blog for any period of time you know that I'm a big one for anniversaries. So here are my current thoughts on this anniversary, which is also a review of what lead up to Mom's death. 

My mother was 92 yo. In her long life she had been an editor, a counselor at a weight reduction place, and then an area manager for a group that brought over foreign exchange students. And a writer, always a writer. Intelligent, well informed, and very erudite. By the time she was in her 70s, though, she seemed older. Always short, she started shrinking more and more, that accelerated in her 80s as more and more vertebra collapsed, until she was down to only 4’5”. The Parkinson’s hit when she was in her mid-80s. The symptoms began as relatively mild but, as is usual, it affected her balance. In April 2017, at  87 yo, she fell, taking only a couple steps away from her walker to dispose of junk mail, and broke her pelvis in several places. That was when things really went downhill. In a lot of ways the day she fell was the day my mother died.

 The pelvic fractures along with all her other medical issues lead to her bladder being non-functioning, so she needed an indwelling bladder catheter. There is a huge psychological toll when you can no longer toilet yourself, it was completely understandable that she became more and more depressed. Her arthritis meant she couldn’t empty the bag herself, she had to move to the assisted living floor, surrounded by people who weren’t nearly as sharp as she still was. She was excited at one dinner when she had a spirited conversation with another resident in their dining room, but her hopes of a mental equal were dashed the following night when the woman sat across from her and proceeded to repeat everything she had said the night before.

 Over the next few years Mom asked me repeatedly when she would die, she didn’t want to be in this body. Things got worse during the pandemic, when she was restricted to her room for months at a time. She told me she had never thought she would be grateful for the urine bag which needed to be emptied several times a day, but it meant face-to-face time with staff members. Once the pandemic was over it was obvious that it had taken it’s toll, yet her body continued to function. She went out of her way to find something positive or funny to have as conversation every day, but it just got harder and harder. More and more she said to me ‘How can I die? What can I do to die?’ The only option she had was to stop fluids & food, something called VSED: voluntary stoppage of eating and drinking. She said she wasn’t ready.

 Then the Parkinson’s started affecting her mouth and tongue. She had to move food with her hands to get it in the right place in her mouth so she could swallow. It was humiliating, she took to eating in her apartment rather than in the dining room, too embarrassed to be seen putting her fingers in her mouth over and over. Then, last summer, it affected her speech, she couldn’t form words and her voice became so soft and indistinct that even the Alexa echo dot couldn’t respond. For her that was the final straw. With the blessing of her internist she went on hospice, and stopped eating. She was happier than I’d seen her in years.

In 11 other states in the country there is something called Medical Aid in Dying, MAiD. It’s designed for those who have cancer or other fatal diseases, it means you can go to your doctor and, after jumping through several hoops, get a prescription to end your life. You can have control over when you die, you can spare yourself the agony of continuing to deteriorate, be in pain, unable to function. But Pennsylvania won’t pass the legislation, so someone like my mother, suffering for years, knowing everything would get worse, has no other choice but to starve themselves. This is clearly a massive dichotomy in a country that supposedly honors each person’s right to happiness.

 The first 10 days after she stopped eating she was more content, more relaxed. Word spread in her community, where she’d lived for 20 years, and friends stopped by to say goodbye. Several of them told her how much she had meant to them, how things she wrote gave them joy, the biographies of new residents that she wrote made their moving in easier. I was with her every day, witnessed this, and it was beautiful, sort of a living funeral, where the person gets to hear all the wonderful things people say instead of at a memorial when it no longer matters to them.

 Mom was a Baha’I, a fairly small religion with a lot of rules around burial. I’d already bought a cemetery plot she approved of, and she watched with pleasure as the items required accumulated in her room: the white silk shroud to be buried in, the rose oil, the ring that is placed on the deceased that says in Arabic that you are going back to God. Friends from her religion came and prayed with her, as I sat back respectfully observing.

She’d stopped any food intake, but the day after she stopped eating I offered her some chocolate, and her face lit up with a child’s delight. I assured her that it wouldn’t impact the dying process, and she seemed to like the secret cheating that only the two of us knew about. I brought her brownies and candy, she’d only eat a little, but would always smile broadly and her face would brighten as she savored the taste.

 Ten days without food, but she was drinking a lot of fluid. She’d asked if she could stop the ‘damn CPAP’ since she wanted to die, but without the humidified air she would wake with her mouth dry and uncomfortable. She was definitely fading, but it wasn’t fast enough for her. When we were alone that night she struggled to sit up a bit more, looked me directly in the eyes and said ‘How can I die faster?’. She knew I’d be honest with her, that was our agreement. I looked back at her and said ‘I will never deprive you of anything you ask for, so know that, before I tell you how you can speed the process: you will die more quickly if you stop drinking anything other than a small amount of fluid with your pills.’ She nodded her comprehension, and just said simply ‘ok’. And that was it. She stopped drinking fluids cold turkey. I admired her bravery, something she’d never displayed much of before, but she had made a decision that she was going to die, and damnit, she was going to do it as quickly as possible.

 She faded more quickly then, and I stopped giving her chocolate, because her mouth was too dry to safely swallow anymore. Five days later she was sleeping more, barely talking. The hospice nurse came on Monday and said she thought Mom would die by the end of the week, when I repeated this to her she responded “Good’, and that was pretty much the last she spoke.

 It still took another five days, but she was unconscious by then. She developed bed sores incredibly quickly, and I begged for the morphine, but it wasn’t given as often as it should have been. Her eyes sank in, her gums receded, her body shriveled down more and more until she no longer looked like herself. And all I could think of was how unfair it was that this was her only option, this difficult choice. At least by that time she wasn’t suffering, it was harder on me watching. I tamped down my anger at a medical system that forces this horrible way of dying on our elderly and sick.

 In the prior weeks she had talked excitedly about people she would see on the other side, in the Baha’I belief of heaven. After she became unconscious I continued to talk to her, to remind her of all those people. When you reach almost 93 yo most of your friends & relatives are gone, so I told her that there would be quite a crowd to greet her. I didn’t talk incessantly, but always spoke as if she could hear and understand me.

 On Saturday I knew it was close, she was breathing about 40 times a minute, her core was very hot but her arms and feet, drawn up in the fetal position, were ice cold. Her heart rate was about 120, the fluttering in her neck easy to see with her dehydrated body so shrunken. Mom really only wanted me with her, except for one friend for a few hours in the mornings before my arrival. I’d been pushing myself constantly for over three weeks, had taken up the offer of my cousins to support me by staying at my house. Beth looked at me that morning and said in her typical blunt fashion ‘You look horrible. You can’t keep this up, you’re going to get sick. I’m coming over at 2:00 and you’re coming home to rest. I’ll stay with her, you have to have a break.’ 

At about 1:00 I said to my unconscious mother ‘Mom, if you want to die with it just being me with you then you’ll have to do it soon, because Beth will be over in about an hour. So just know if you want only me with you it needs to be soon.’  Less than 20 minutes later her breathing dramatically changed, I began reading her the Baha’I prayer she wanted said over her, it was only the second time through reading the piece when the pulsing in her neck stopped, and she was gone.

I sat there with her for 10 minutes, not calling anyone, because you never have that time again, those moments right after a person leaves this world, and regardless of your beliefs in a spirit or an afterlife, that time is sacred. So I just sat with her body, and honored that transition, glad that she had gotten her wish and was no longer suffering. I hope there was a big happy party waiting for her, and everything that she wanted from heaven.

 A nice woman from the hospice bereavement program called me today to check on how I was doing. She told me how difficult the first year always was, and with the holidays coming up it would be normal for the grief to be worse. But it isn’t, because my Mom changed from who she was years ago, and I’d already grieved that loss. My only emotion a year later is a quiet joy that I was able to advocate for her to give her what she wanted, and know she’s at peace. And that deserves celebrating, not grief. I’m going to quietly honor her passing with happiness, because she shed the broken, worn out painful physical body that ruined her last years.

 I don’t believe in a Christian heaven, with pearly gates and streets of gold, but I ardently believe in a spirit that continues on after this world. Anne Morrow Lindburgh said ‘We are not snuffed out at death, but absorbed into a larger flame.’  My comforting image of Mom is of pure spirit, released, able to swoop and swoosh up & down without limits, communicate easily with other spirits, be enveloped by pure love from that which is greater than ourselves, which some people call God. No longer pinned down in a limiting body she is joyful and happy and no longer in any pain or discomfort.

 Party on Mom, I just know you’re having a wonderful time.

I know. Just shut up & listen.

Once again I've broken my left foot. In case you've lost count that means it's the FOURTH TIME, although it's over eight years since the last one. In November, while filling the bird bath, I dropped a bottle of water on my left second toe. Buddy taped it, carried on with the busy season. By January it wasn't better, taped a different way, still took another couple months before feeling better. But hey, it was just a toe. In April I started walking more normally, but must have been rolling my foot outward to avoid the toe, so got a stress fracture in the 5th metacarpal at the cuboid. (That's the bump that sticks out on the outside of your foot.) People's response is typically 'oh, it's only a stress fracture!', since that normally isn't as big a deal. But it is a big deal when you have osteopenia, are on chronic steroids, live by yourself and, in case you forgot already, have broken the same foot three times before, including the 5th metatarsal. 

I've faithfully worn the boot for over 6 weeks, but the fracture site still aches. I use a cane, and the knee scooter which was wisely kept, whenever outside the house. Mostly I stay home, order from Giant and Chewy, and participate in things on Zoom. I even stopped filling the bird feeder, because it's on an incline and hurts to get out there. Found people for increased cleaning & outside help but they want a minimum of 2 hours. I'm not disabled enough or sick enough to have a home health aide, plus they require a certain number of hours per visit. Living in a retirement community isn't the best place to find neighbors to help, the people that surround me are either years older, compromised themselves or have sick spouses. Yet there are things which need to be done when you live alone, including making meals, taking care of the cats (Spice and now Sweet Pea, who is more like an expensive house guest than an adoption), getting the mail or packages inside the house, putting deliveries away, getting stuff from the garage, even just moving things from room to room. There is little more that can be done to stay off of the damn foot. 

What is prompting this missive is my increasing aggravation of being told how 'lucky' I am, and even the tiniest complaint being met with a litany of things to be grateful for: it's my left foot so I can still drive, I don't work, have insurance, can use all four limbs, 'at least there's Zoom', have a one-floor house.....  Almost every person want to remind me of how lucky I am the second I mention anything difficult, because apparently you aren't allowed to be anything other than constantly positive & upbeat.

I'm a big one for being grateful. If you look back to the 2009-2010 era I talk about establishing a gratitude practice, using beads to count my blessings every night, and that practice has continued through the present. I am very, very aware of my blessings: steady income from disability, Medicare, supplemental insurance, use of my brain, able to take care of myself, my own house & car, live in a safe neighborhood and, my perennial favorite, indoor plumbing. All of these things are true, and leave me much better off than, literally, billions of people in the world. Yes, I know. 

Remembering those less fortunate doesn't made a difference when you're dealing with your issues on a minute-to-minute basis.  Knowing how lucky I am to live in an area that isn't being bombed or dealing with famine does not make it any easier to walk up a flight of stairs and struggling to breathe. Here's a fact: you can be grateful for your blessings, but it doesn't make your problems disappear, it just helps keep things in perspective over the long run. 

For over a decade and a half I've dealt with the sequalae of my disabilities, knowing it will never be possible for me to go many places or do a lot of things other people do without a thought. I wistfully wonder what it would be like to have the energy to do anything I wanted like other people seem to be able to do. I wonder what it would be like to be able to make plans for an activity that takes more than a couple hours or raises your pulse for more than ten seconds. What's it like to go for a walk and not have to think about if there's a nearby bathroom or if you have to wear a diaper for just in case? (Amazingly, part of what makes walks in nature so awesome is a lack of buildings, ergo no toilets.) How marvelous to go for a hike and not worry about balancing your need for water with the resulting peeing. How terrific it must be to be able to stay overnight somewhere without lugging around a wedge for the bed, several pillows, CPAP with water, portable sound machine & fan, striking the fear of God into hosts who think that amount of luggage means you're moving in for weeks. Hearing about people who do something in the morning, afternoon AND evening--I get to choose one of those on a good day. I've had to accept that having chronic debilitating diseases means I can't do much of what 'normal' people take for granted, like climbing stairs without being out of breath, going more than two hours without a need for a bathroom, or getting through a day without lying on the couch for a couple hours. It took years for me to work through and deal with my anger and resentment about what I couldn't do, can't do and will never be able to do physically. Now I just sigh and wonder what it would be like to be healthy. And I don't complain, don't get angry, just accept. And, occasionally, wonder wistfully.

And then something more goes wrong, and now I can't take 50 steps round trip to fill the damn bird feeder that gives Spice and me so much entertainment. Or fill the bird bath or care for the spring flowers that a friend got into containers for me. And, briefly, I'll whine. Because it's ONE MORE FUCKING THING. I've developed coping mechanisms and acceptance of so much, so yes, I am very resentful, and sometimes downright angry, when something happens which requires more changes on top of the adaptations for every other fucking thing I'm dealing with physically, every hour of every day, which will last for the rest of my life. 

How much more can one person be expected to cope with and adjust to in this world? When, I ask the Universe, is enough enough?

But then, typically within minutes or even seconds, I'll remind myself of all the things I can do that millions can't, and send up an apology and prayer of gratitude, cognizant that things could be so much worse. But sometimes, every once in a while, everything just seems overwhelming and I will whine in those break-throughs of frustration to someone who will invariably say in a very sincere tone of voice 'But you're still so lucky because.......'   

I FUCKING KNOW, just give me a couple of minutes to vent, will you? Without your 'helpful' reminders and sanctimonious tone trying to give me 'perspective'. JUST LET ME WHINE! I fucking deserve to complain because IT'S ONE MORE DAMN THING on top of all the other damn things that I've accepted, with what I'd like to think is remarkable stoicism, for the most part (not including this rant!. Will you just shut up & listen?

And while I'm on a roll here's another issue: I'm not asking you to fix things. My least favorite phrase in this situation starts with "You know what you should do? You should _________"  DO NOT TELL ME WHAT I 'SHOULD' DO, most likely without a complete understanding of the other issues that complicate the matter, or a recognition that spending my days at home means I've had lots of time to come up with solutions that, for various reasons, will not make a difference. All I want is to vent and get a little sympathy. Not told how lucky I am, to be grateful that there isn't more wrong, not told 'be positive, not told what I 'should' do, not told 'well, at least....'

There's an interesting part in the story of Job that people forget. After all the horrible things happen his friends gather around and, for seven days and seven nights, they just sit with him in silent commiseration. But after this period of support the friends start with 'What did you do wrong to deserve this?' "Behold, happy is the man whom God correcteth; therefore despise not thou the chastening of the Almighty" and other unhelpful phrases. In frustration, by chapter 16, Job yells at them 'miserable comforters are ye all!" What this proves is that this behavior of people not being able to just quietly listen and say 'Gee, that sucks, I'm sorry' has been going on for thousands of years, so maybe it's just human nature.  

Therefore, my 'lesson' from this posting is: let people get away with a little whining occasionally. Not wallowing for days on end, not an endless stream of 'woe is me', just voicing frustration. Because chances are that you don't know everything that has lead up to their need to just bitch about something for a short time. Just listen, murmur sympathetically, and commiserate. I'm not expecting any epiphanies or words of wisdom. Just shut up and listen. 

Here's a thought: if it's you who needs to release some pressure then start off with that: 'I don't need a solution. I don't need to 'put things in perspective', I just need to vent.' Maybe, if enough people start doing this, we can break the chain of thousands of years of unhelpful 'But it could be worse!' 

I know. Just shut up and listen. 

Back to the beginning of hospice

Read over some of the earlier posts for the first time since writing. Was unhappy that I didn't start documenting until a couple weeks into the process, thought it had been earlier. That said, I can't be too upset with myself, because it was more than a little busy.

As noted in other posts the VSED was something Mom & I had talked about for several years, but she always dismissed the idea. Then, as noted, her urologist started bringing up withdrawing care. This was in June. She said she needed to think about her options. I brought it up a few times and she said she still hadn't made a decision. At the beginning of August I asked again, explaining that if she was ready that was fine, but it she wasn't then I was going on a spiritual pilgrimage that was very needed; she said she wasn't ready. I started making plans & reservations. Then, a couple weeks later, we saw her internist, and I told him what the urologist had said. That's when he dropped that part about JP2 stopping all care, and that made a huge impression on her. She wanted more info, wanted me to give her a detailed schedule of what would happen and how long it would take, despite my telling her repeatedly that everyone was different. I went over to have the conversation face-to-face, but didn't think she was ready to make the decision any time soon.

I was gone for over three weeks, didn't see her in person for five days. She had an eye appointment on Oct 3, and of course I was meeting her there, it came up in conversation with the ophthalmologist that she was considering VSED, and his immediate response was 'If I was her that's what I'd do'. After the appointment I went back to the apartment, showed her some pictures, and then she calmly said 'I've decided I want to stop eating and go on hospice.' Gotta admit, that was a surprise. 

The next week is a blur, it was then, more so now, seven weeks later. There were calls to the internist to set up a meeting just about hospice, calling hospice, talking with the nursing director and several other things which escape me at the moment. All I remember was that it was non-stop, plus I was involved with the service that Sunday. I was at her house every day, she was very calmly dictating getting rid of things, reminding me of subscriptions to cancel and writing her obituary for both her residence and her college. On Sunday, with the appointment with the internist the next day, she told me she didn't want to eat dinner. (This is referenced previously.)

I so wish I'd been documenting after that appointment, but it really was incredibly busy. Hospice couldn't come out until that Thursday, we'd been anticipating either Tues or Wednesday, but apparently they were on a roll with other patients. Again, I can't remember all the details. By this point she was telling people, and her friends started dropping by to talk. It was interesting hearing about a side of her that I'd rarely seen, and she was very moved at many of the kind words. One woman said that Mom had changed her life through some of the readings and discussions in the inter-faith group she led for years; after the woman left Mom looked at me in amazement and said 'I had no idea she was so affected'. She asked me to repeat the woman's words several times, repeatedly amazed at her impact. 

The intake nurse came on Thursday, and, as previously noted, said that she wasn't comfortable pulling the Foley. This made Mom very anxious, and, as previously noted, was reversed by the nurse who came the following Monday. Hospice said they would be out twice a week, and it would increase as Mom deteriorated. I asked her about the timeline, and she said 2-3 weeks but, of course, you could never know for sure when it would happen.

My happiest memory is that Monday, so after she had been officially on hospice for only four days. She was still very much herself, looked like herself, acting normally, despite no eating for a week and only limited water. She'd gone to only wearing nightgowns, not getting dressed. There was a sale scheduled for election day, Nov 8th, that would benefit the benevolent fund, and Mom announced to me that she wanted to go through her jewelry and donate everything I didn't want to help the fund. Mom had always been an avid jewelry collector, especially necklaces and earrings. She never got her ears pierced, was so happy when I got mine done and then would buy earrings for me. But she had dozens and dozens of pairs of clip-on earrings or screw back earrings for non-pierced ears. She'd stopped wearing them years before, and they'd just sat there, she was stunned there were so many. Three jewelry boxes absolutely stuffed, then more and more office-type boxes with necklaces, and then a small cabinet. She was horrified she had that much! 'Why did I keep buying all these things?' she kept asking. She didn't remember most of them, or didn't remember why or where she had bought, I was able to fill in some blanks. There was a ring she never told me her parents had given her for graduation, although she couldn't remember if it was high school or college. It was so much fun looking through all those boxes, all those memories, all the craft festivals and trips to Europe represented in the form of jewelry. I kept more stuff than I can ever picture wearing, because when you don't work there are a limited number of times when completely accessorizing doesn't look ridiculous, and I've got a fairly extensive collection of my own. But I couldn't get rid of her favorite necklace when I was growing up, or the amber from our trip to Russia, or the gold embossed black metal from Toledo, Spain, or the foil glass from Venice, Italy.

Even with my keeping a small shopping bag full there were still hundreds of pieces to donate. I had called the woman running the sale the previous week, and she told me they would be sorting in a room upstairs. Mom was so happy when I told her how all the women exclaimed over all the boxes, couldn't believe what nice things she was donating. A couple of them said 'How did she manage to accumulate this much?' I pointed out that most women bought more than they needed, because they went with a new outfit, or were perfect for a season, or were just appealing, and that it was easy to forget how much you have when it's in several different places. 

The rest of that week we went through some other things, there was a set of postcards she had framed and really wanted to see, I found them after she was unconscious. We met with the social worker and had a lovely chat. Mom was getting weaker and weaker, sleeping more, and it finally hit me that this was going to be hard on me as she worsened. Beth & Mark had separately offered to come up from Virginia to support me, and a week into the process I decided to take them up on their kindness. Mark can work remotely, Beth at 90 yo still does an incredible amount of volunteering but told everyone she was gone for the foreseeable future. They arrived and saw Mom on the 21rst, late afternoon. Mom brightened up, gave her 'so far dying is easy' line, but only 10 minutes after their arrival announced that she wanted to nap and asked them to leave.  

And that pretty much covers what I can remember that isn't in the prior posts, which began on the 17th, 12 days before she died. This is, of course, mostly journaling for me, before the memories fade even more than they already have. 

I picked up her favorite ring from being sized on Tuesday, and have been wearing it every day. It's beautiful, and brings back good memories. On Wednesday I headed to Beth's, the first time in at least a decade that I hadn't come on Thanksgiving Day. After Mom stopped wanting to travel down to VA many years ago I would go to her place and eat dinner at noon, then drive 4+ hours to Beth's. Last year I don't know why I didn't leave Wednesday, maybe because of the cats, with COVID they weren't allowing visitors at Mom's. It felt weird to come down on Thursday, and, of course, the traffic was worse. 

It's been a lovely several days with family, enhanced by Spice being with me. He's just the best kitty, although he hates the car ride, even with medication. But he's enjoyed running around and checking out new smells and unfamiliar spaces, and has thoroughly enchanted the family members who hadn't met him. I'm hanging with friends for a couple days, then Spice & I will return home and to reality. 

Reality involves more people to contact, more paperwork to be done, more boxes to cope with, more of my stuff that needs to be sifted through and gotten rid of to make room for things of Mom's with which I'm not ready to part. I'm keeping too many things, but my position is that I'd rather get rid of things slowly than make a mistake and lose something forever. It is weird, however, as more and more of her things get incorporated into my house, which I've mentioned. It's still weird. 

Mom's reason for doing VSED

 Note: Recurring problems with router, so getting on-line has been a struggle, increasing over the last few weeks and making everything more difficult. The router was replaced, multiple 're-sets' done remotely, still problems. Today the Xfinity guy checked the cable line and found that mice had eaten holes in several places. He replaced the cable and all seems good--yeah!

Brief overall update: Mom's apartment is completely cleared, including the pieces no charity would take. Found a junk dealer to take, they will rehab and sell, then donate any money to veterans organizations. I misplaced her wallet, making it harder to cancel things. Took her favorite ring in last week and was notified that it was ready, can't wait to wear as it's a special memory. Tomorrow everything will be officially over where she lived, as I turn in the keys. 

I had a major breakdown last Monday & Tuesday, mostly involving how she looked in those last days, the difficulty watching her wither away, how brave and committed she was, and my pain that she had to make the decision because there was no other choice, details following here. I'm better now, hadn't had a really good cry since she died, it's all been non-stop, life goes on and things need to be coped with that have nothing to do with her death. People are very understanding, because this is something that, in the natural order of things, everyone goes through at some point.

As I've been telling Mom's stories to people it's been a reminder of just how much things had changed in the last five and a half years since her major fall. She was doing great until May 2017, at 87 yo, when she had already walked the equivalent of several blocks over to the Acme, speeding along with her walker, and was back in her building. She took 2 steps away from the walker to dispose of junk mail and fell, fracturing her pelvis in three places. Along with the Parkinson's and the multitude of vertebral fractures it left her bladder incapable of contracting, resulting in the in-dwelling urine catheter. Her hand arthritis had been worsening for years, she was unable to flip the lever to empty the urine bag on her own, which lead to having to move to Personal Care (less nursing staff than Assisted Living). I had already found my house, was waiting to make settlement, when she fell. That meant that even though I was closer she was no longer as able, or willing, to leave her building. There were many issues when staff didn't close her bag fully, leading to her leaking urine wherever she left, which was humiliating for her, not to mention the need to change pants and shoes. She probably would have begun slowing down, but the issues with the catheter just seemed to deflate her, she aged so quickly. She lost more and more fine motor function in her hands, she could no longer type, meaning she could no longer write, her greatest passion. 

More vertebrae collapsed, to the point that her lower ribs were in her pelvis, which necessitated a fentanyl patch for pain control. It is probable that the narcotic exacerbated her dementia, but it was a needed trade-off to control the pain. Even before the pandemic she was reluctant to leave her building, wanting the comfort of having everything she needed right there, and the embarrassment of leaking urine bags. I offered to drive her around after medical appointments, since she was already in the car, plus the one upside of the urine bag was not needing a bathroom repeatedly. But she would just want to go home, too uncomfortable to enjoy the spring green of trees budding, summer lushness or autumn's bursts of colors, all of which she had always loved. 

As has been noted by many people regarding their elders, the pandemic definitely worsened things for her. She noted that the need for the staff to empty her Foley bag several times a day at least gave her interaction with other humans, but she deteriorated mentally. Then, last year, she had two major falls. One was while getting into bed, she just didn't get her butt over far enough and fell, breaking her wrist. That meant she couldn't use her rollator, on which she was completely dependent. It was with amazement that everyone watched her work hard in PT to recover enough to return to her apartment. Then, less than six months later, she fell in the parking lot, where she'd been walking for exercise and to enjoy the sun. She fell so hard that she broke her right knee-cap and took a major shot to her head. While the CT was negative everyone agreed that she did not return to her previous mental functioning. 

By the time the waning pandemic allowed meetings she was unable to lead the inter-faith devotionals, which had been her last remaining joy, between decreasing mental abilities and profound fatigue. She complained regularly, and understandably, about being unable to do anything because she spent all her time just doing the basics. Eating was tortuous, she had stopped enjoying food even before the 2017 fall, and as the Parkinson's progressed it affected her mouth and tongue movements. Her swallowing was fine, but food would get caught in her cheeks and teeth because her tongue no longer was able to sweep things away, which meant putting her fingers in her mouth to re-position the food so she could swallow. For the past year she had increasing issues with rectal prolapse from the neurological deterioration, had to repeatedly push her rectal tissue inside, multiple times a day. And then in the past several months her speech became more and more difficult, a result of the Parkinson's. She couldn't even get Alexa to work, because her voice was so soft and indistinct that it wouldn't hear or understand her commands. Hanging over her was the knowledge that things could get worse, that another fall could break ribs, making every second pain-filled. 

Why am I listing all of these issues, even ones most people won't discuss since they involve elimination? Because this is the reality of aging in America. Her life became intolerable, her body just too deteriorated and her spirit fractured, plus she knew that it would only get worse. 

Repeatedly, she asked me how she could die, but there was no 'easy' answer. There was no chemo to stop, no insulin to take too much of, no heart problems, no dialysis. There was nothing she could do to die. All she could do was struggle through every minute of every day, able to do less and less, sleeping more and more, not taking pleasure in anything. She kept her sense of humor, even as the dementia stole her memories, but her anxiousness just went through the roof. She's always been on the anxious side, but it just got worse and worse. With the narcotic patch on for the pain and her already a major fall risk there wasn't anything to prescribe that wouldn't potentially cause more falls. We tried some of the non-benzodiazepines to no avail. Her anxiety affected every moment of her day, and it was amazing what she could find about which to be anxious, which included which tech was on, who would do her shower, if they were 5 minutes late, it they would come to empty her urine bag..... It was torture. There was no pleasure in anything, only anxiety about what the next day or next week would bring as she continued to deteriorate. 

In 10 states & DC legislation has been passed to allow for MAiD: Medical Aid in Dying. This is NOT assisted suicide, this is not Dr. Kevorkian, this is different. There are all sorts of controls in place, including that the person be within 6 months of death, be cogent, and be able to swallow pills on their own with no assistance. As you might have guessed, Pennsylvania is not one of the states where this is legal. So, for someone in Mom's situation, there is no choice. Short of a desperate measure of suicide there is no alternative, except for VSED: Voluntary Stoppage of Eating & Drinking. 

I'd mentioned this to Mom a few years ago, but she hadn't gotten to that point. Then the urologist told her that she could stop the catheter changes. This would cause urinary retention, leading to infection and kidney failure, she would die of urosepsis. He mentioned it in February and again in June during urgent visits regarding her catheter. We brought it up to her internist, part of Mom's concern was if it was suicide, which is against her Baha'i religion. The internist faced her and asked 'Do you remember Pope John Paul 2? Do you remember that he had Parkinson's? He got to a point of suffering that he stopped all treatments, and then stopped eating & drinking. And if the Pope did it, it can't be a sin.' Much to my surprise for a non-Catholic this made a huge impact on her, and she started considering it more and more. 

After several weeks Mom announced to me that she wanted to stop all treatment and go on hospice. She had found a way to look at it that worked for her 'I want to stop everything that is keeping me alive.' This might be considered dancing on the edge, but I think she was really on to something--not active, but a passive approach. 

There's more to say, but it's almost time for bed, since trying to get up earlier to drive to my cousin's for  Thanksgiving. I don't know when I'll be able to post again, and I don't know if this is ever going to be read by anyone, or help anyone. But it enables me to phrase things in black and white that will help when trying to verbalize in other situations. 

If someone has something nasty or unpleasant to say, please don't bother posting anything. I'm writing this for me, and in hopes it will help someone. If it doesn't resonate with you that's fine, just go read something else.