Connectivity

Connectivity

Ya know that time when you tried to connect to the internet and for whatever reason there is a delay and the cursor just sits there spinning? You can yell, “Oh, COME ON! CONNECT ALREADY!” You will it to connect as though you had no control over the glitch. This is what happened when I tried to move my right foot while standing during physical therapy. I was willing my foot to move, watching my foot remain stationary. In my head, I’m yelling, “Come on, we know how to do this!” I thought of a few other expletives but I digress…Standing is also painful. I read about this with GBS. I was not prepared for the pain in my left foot that brought me back down to sitting. It’s not my tendon or anything of that sort. My cursor was spinning. What I wanted to do was in my brain but would not connect with my foot. It’s most likely associated with weight-bearing again after 15 months of sitting. My body is not used to it, But it will be.

Physical therapy is going very slowly but well. I’ve stood with help on either side of me and can get on all fours while extending an arm or extending a leg out. I do a lot of core work, laying on my back while bringing my knees to my chest and extending my arm with a 5lb weight. All of this is encouraging. I wanted that foot movement though. I really really wanted it. It’s not that I can’t feel good about what I am doing; I’m grateful every day. I want to walk. Weight-bearing on my legs and feet has to and will happen.

I can type with two fingers. This is how I completed my college degrees and how I write this blog. It’s a painstaking process but how I plan to continue with school. Right now I position my fingers accordingly on the keyboard but what I intend to type and what gets typed are two different results. So two fingers it is. No one knows what my new norm will be so whether or not I get full use of my hands back is yet to be seen. I’m trying to adjust not only to prepare myself but to find ways to remain productive. Reading is challenging with my visual changes but I’m going to pick up a book from a friend and attempt it in small bouts.

Have you seen What About Bob? It’s all about baby steps.

Ch-Ch-Ch Changes

(Note-This is not an exact timeline, but a rough recall of events.)

Last October I was admitted into the hospital. I had been having strange symptoms for which there was no answer. I’ll explain what happened first then give an update.

I had numbness in my legs and all of the sudden walking up the stairs made it feel as though I had sandbags on my legs. My brain told me to chalk it up to being fatigued but deep down I was nervous. The numbness and tingling was spreading and had made it to my arms and legs. I felt “heavy”.

After talking to a couple of wonderful friends I met in nursing school and explaining my symptoms, they both immediately brought up Guillain-Barre syndrome. I had the symptoms but needed to be diagnosed. Out of an abundance of caution, I headed to see my primary care doctor who shortly after examining me and evaluating my symptoms, instructed me to go to the ER, which we did.

MRI, check. CT, check. Blood work, check. All normal but nothing pointing to answers. I’m released still not knowing what is wrong with me. I called my doc back and she insisted i go to the other hospital here and ask for a lumbar puncture, the only way to formally diagnose this. Once there, I was seen promptly and they informed me that I would begetting this procedure. It’s not a walk in the park and I hope I never have to have one ever again.

The results came back positive. A year ago this month, I was diagnosed with Guillain-Barre (GBS). Life as we knew it would drastically change.

GBS is autoimmune, My immune system is attacking my peripheral nervous system. There isn’t a lot known about it’s cause but we do know that certain vaccines and infection can cause it. Mine was likely caused by a gut infection I didn’t know I had until after a surgery.

My immune system is not strong enough to get my usual flu and covid shots, or the shingles shot since turning 50. GBS usually reverses itself but you don’t know what deficits you’re left with for some time. Hope is always alive as we patiently wait for a verdict. Time is a bitch.

Without going into the nitty gritty, the past year has involved a total of nearly 6 months inpatient between the hospital, a skilled nursing facility. I was paralyzed from the waist down, was on multiple meds for pain that barely touched it, and worked through grueling therapy to get where I am now. I’m still in a wheelchair but can move my legs, am off the heavy duty pain meds. I am on a medication for severe nerve pain. My hands feel like sandpaper and numbness still plagues my extremities, but every week I get a little more feeling back. This has been a hellish experience but therapy is helping me cope.

I’ve not lost sight on how far I’ve come.In many cases you can end up on a ventilator. Fortunately, I escaped that nightmare. I’ve now been home longer than inpatient. There are things I can do myself like comb my hair, get dressed, and do some make up. It’s normalcy that I crave the most and strive for. Getting to see family and friends, being able to transfer from a wheelchair to the car is physical and mental freedom.

I start back up with therapy in January ( I maxed out my visits with insurance, another blog post) and continue with my exercise regimen at home. My drive to walk is impenetrable and I am willing to do whatever it takes to reach that milestone. My physical therapist is incredible and has helped propel me forward, albeit slowly. Progress is progress.

Gratitude is forever etched into my heart. Friends that have helped with meals, financial contributions, and visits (I LOVE visits). often brought me to tears. Family has been so supportive an helped beyond measure. I hate to use colloquialisms. Reeeeally hate to, but-the phrase, “It takes a village”, is not lost on me.

Most importantly in the gratitude department, my hubby. His care is tireless. His support unending. Working full time, caring for me, our two cats, keeping up on housework, and cooking our meals-he’s an incredibly amazing human with a sturdy heart of gold.

Lastly, I jumped back into school, determined to finish my last three classes before I transfer to Oregon State University to complete a degree in Public Health. It’s an online program which will work well given my situation. Career options are key since I’m now more susceptible to getting a flare of this again and being able to work remotely or even in a wheelchair is big. I will still work as an end of life doula but not until I’m walking since accessibility will be a challenge.

A lot to ingest. That’s how life feels but we are trucking along one day at a time.

Stepping Up

My apologies for being MIA this past week. I received my second Covid booster, and these never go well for me. I’m back in the land of the living, so I can provide a few updates. I’ve finished my End of Life Doula classes through INELDA. The final classes were bitter-sweet. Between the rich discussions, the role-playing activities, and journaling, you really bond with some of your classmates. I will miss the classes. So I am now a fully trained End of Life Doula. The certification process continues this summer, as they are revamping it for more mentoring and support.

The next step I took and completed today was to become certified by the Americans Clinicians Academy on Medical Aid in Dying. In Oregon, this is known as Death with Dignity. This is NOT assisted suicide, and it is actually illegal for insurance agencies to consider it as much. In Oregon, Death with Dignity is for terminal patients with less than six months to live. So these patients are already dying. This gives them control over the dying process and alleviates needless suffering. I’m very passionate about my support for this and will work to advocate for patients to have this right in any capacity I’m able to.

My last step will be to complete the therapeutic touch program. The first three foundational classes begin in September and run through November. Once those are completed, I’ll work through classes four and five, then certification. This is not only something I can do with the hospice patients I’ll be working with but as a stand-alone modality.

Marketing, business, rates, availability, etc, and all those details are being worked out. Once they are I’ll be sure to share all of that in a way that makes sense with my logo and some other details about what I’ll be doing. Thank you for following along with me here as I navigate this. I can’t wait to meet new people and help with the healing process in whatever capacity that may be.

What Is Your Legacy?

My last two classes have been, what’s the word I’m looking for… fulfilling. Have you thought about how you want to be remembered? We call this Legacy work. This could be something as simple as a letter, photo album, or music playlist or as involved as a book of memories or special mementos given to loved ones.

We talked about end-of-life stages and the signs of imminent death. We discussed grief and how the various stages can weave in and out of the day in no particular order.

How are you living now? Have you compared that to how you want people to remember you? Of course, we had to give that some deep thought. The part I enjoyed the most, though, was discussing rituals. Rituals can involve candles, prayer, poems, readings of various sorts, songs, etc.

Our in-class exercise was to work as a group of five and plan a ritual for a dying person. My group was so cohesive that the 40 minutes allotted for the exercise flew by very quickly. We all agreed we were all sisters, which would be for our grandmother. Someone had an excellent idea to describe each of ours and pull out qualities we felt were most significant. One worked in rice fields and had multiple children. Their ritual in their country was to carry a wooden casket through the town and wail loudly. One always had chocolate coins in her house. One grandmother was Jewish and made Challah bread and blintzes. My great-grandmother always had butterscotch Brach’s candies, dressed to the nines every time I’d see her. I adored her.

We took the main traits; strong, beautiful, hard-working, loving. We approached our ritual as though we were “breaking bread” together. While a playlist of her favorite music played in the background, our grandmother’s loved ones were gathered together in my home. With each bite of a gold coin, butterscotch candy, blintz, or sip of Sake, they would share a memory, and it could be serious or funny. In the end, a poem would be read by one of us “sisters.”

We learned that sometimes the little things- a taste of something, a smell could trigger our best memories. Grief is a whole other topic I’ll address separately. My last class is Saturday. I’m sad about that. I’ve thoroughly enjoyed this work, the people, and learning how to make people’s final days meaningful and comfortable.

Once I complete my classes, I’ll take steps to apply for certification, which involves clinical hours and an experienced doula shadowing my work. I’m excited about that.

Finally, I’m researching scholarships to become a certified Touch Therapist. The whole process is not cheap totaling around $3000, so I’m exploring my options, but it would be something I’d love to offer my clients to ease their pain and or anxiety.

I am relishing the moment and knowing I am in the right place doing exactly what I should be doing. Caring for the dying is not easy work. But, it is fulfilling to honor someone’s life and assure they have control over how they exit this world in the way they wish.

One Defibrillator Vest, Only Slightly Used

Some people find humor around death disturbing. How can you joke about death and dying? Our family does it quite regularly. When enough of us have had to face our own mortality, you can succumb to the doldrums or lean toward humor. We choose humor. One time we were in a recovery room with my dad, and we all started laughing so hard his heart monitor went off. Another time my husband was in my dad’s hospital room, sitting on the only “chair” available- a commode. The grunting noises didn’t help. We all lost it—laughter among delirious tears.

Humor isn’t for everyone, but it’s important to acknowledge that it can be for some. Humor and laughing release the feel-goods, aka endorphins, in your brain.  At one point, my dad needed a defibrillator for his heart, but we had to wait until the insurance would authorize it. In the meantime, they recommended a vest that would defibrillate if necessary but was around $3600 per month. Suddenly discussions about eBay came up. “One slightly used defibrillating vest. Only minor burn marks”. We lost it. I think the staff thought we’d all lost our marbles. It’s how we cope.

Last night in class, we started by discussing our own death vigils we wrote out. Many of us wanted to be surrounded by trees and nature. One wanted an RV, and none of us had thought of that. It was brilliant. You can stop and be anywhere in nature you want to be at any time, catch sunsets and sunrises. We got a good giggle out of it but in support of the idea. Many wonderful ideas were shared, and you can bet we all took notes. For privacy, I’ll leave it at that.

Next, we discussed exploring meaning. We’d role play, using open-ended questions to delve into the client’s life. Accomplishments, what brings them joy, what activities do they like to do? Or, tell me about your career and what lead you to it. It’s amazing how much you learn by being quiet and just letting the information flow. The open-ended questions were designed to draw out further meaning, further pieces that makeup what the client is as a person. It was a joy to have this exchange and also play the dying patient answering the questions. It makes you realize what is most important to you.

The last activity was intense. We learned about R.U.G.S., which is for Regrets, Unfinished Business, Guilt, and Shame. Many of the dying have unfinished business or may need closure.  For the final activity, we role-played around the R. and U. Fortunately; they kept us with the same person we paired with earlier for the meaning exploration. It was a meaningful, thoughtful, heavy discussion. The activity made you realize how vulnerable a client can feel sharing these personal puzzle pieces that had gaps where some were missing. My partner was gracious, easy to talk to, and an excellent listener, so that certainly helped. Sometimes the client won’t get closure, so we discussed the possibility of writing a letter and having it buried or cremated with the client.

Everyone has a different reaction to death, and neither is wrong, whether it’s humor, grace, or peace. Sometimes it’s a little bit of each that brings us comfort.

Class – Take 2

Have you thought about your mortality? How your death may play out if you had choices about where, when, and how you would die? Let’s face it; it’s a topic most people would much rather avoid. We don’t make coffee dates or plan happy hour around discussions of deathbeds and rituals. Should we?

I’ve seen family and friends caught off guard around the death of a loved one. There were no plans and no discussions around what that person may have wanted. These difficult decisions, financial planning, and logistics were all left on the shoulders of the survivors.

A death doula can help with planning, and we discussed this in our second class on Saturday. I was on time for that one, by the way. We talked about planning and how important it is to ask open-ended questions and be completely present and silent to take in the patient’s desires, fears, and concerns. We also discussed self-care and its importance for our physical and mental well-being. Finally, we had to write out what we do for self-care now and what we plan to add or change once we are working. I had a lot of respect for this conversation because this type of work requires so much mental acuity and physical presence. Hours can be long and emotional. Self-care is critical.

We also talked about the early signs of dying and what to expect. For example, dying patients often stop eating, and this can be disturbing for the family. The body knows how to die. It knows how to shut down organs slowly and in what order. If you feed a body whose stomach is no longer moving food along, it will cause discomfort for the patient. This information is not just for our knowledge but, more importantly, so we can educate the caregiver, family, and friends- whoever is present during the vigil (active dying process).

Our homework for Wednesday is to plan our death vigil. I’m not going to lie; this is weird and brings up a whole plethora of emotions. Our family has had a lot of discussions around death due to terminal illness and other unexpected health events that have come up. Sometimes we use dark humor when things are serious. “Lightly used casket, pet, and smoke-free environment.” Everyone deals with death differently, and that’s the beauty of this.

I recently read about being buried in a shroud and covered with flowers before being placed directly into the earth. No casket. Another place will compost your body. There is water cremation (much more environmentally friendly). You can be cremated and made into a record. You can donate your body to science. There are many options, but the options people think about the least are how they want their dying process to look, feel, and sound. They aren’t easy conversations, but they are necessary. I told my hubby if he cremated me, I’d come back and haunt him, but that’s another story.

Eastern Standard Time

Well, the class had an interesting start. When I say interesting, I mean a fail on my part to notice the time was eastern, not pacific standard. When I realized the time difference I practically fell over in a panic, running to the table to log into the Zoom session as fast as possible with my book ready to go. So I did miss a little of it. However, I read ahead to see what the material was and what exercise we’d be doing. So once I  logged in and was able to jump right into a breakout room on Zoom.

They paired us up with a partner. We’d take turns during our breakout time, one person being the Doula and the other being a client who just found out they had two months to live. So we role-played for quite some time. I loved every minute of the Doula role. For privacy reasons, I can’t share the contents of our conversation. The discussion was fruitful and very powerful. These are not easy conversations, nor is it easy to be deeply actively listening without “uh-huh” or “hmmm” inserts.

 I’m also a natural “fixer.” I want to fix and suggest. These practices are off-limits for a Doula. My place is to guide. I asked all open-ended questions to elicit more from the client and try to connect with them, draw out more emotion and really get to the heart of their concerns and wishes. This isn’t easy. It took complete presence and tuning out any distractions. There were tears with some. Considering your mortality is an emotional act, and when you get into the details, such as the family that may be left behind, kids, or areas that might need closure, it weighs heavily.

My next class is Saturday morning, so I’ll have more to update with, but I feel like I’m in my place so far. I love it.

Doulala

I wish I could take credit for that word, but my witty husband gets the credit.

So you may have noticed it looks a little different here. I mentioned that my nursing career had ended abruptly in my last two posts. I’m now transitioning to becoming an End of Life (EOL) Doula through a program I started last night. I want to take the time here to explain what that means and how my first class went.

At the top of the page, there is a link labeled Doula. If you click on that, it will take you to the International End of Life Doula Association (INELDA) website. INELDA is the training program I’m attending twice a week on Wednesday afternoons and Saturday mornings. So what is an EOL Doula? I will be working with clients in hospice to help guide them and their family, friends, and caregivers through the process before and during the death vigil and aiding in processing their grief. There are three phases, Summing up & Planning, Conducting Vigil, and Early Grief & Reprocessing.

So what does this look like? When I first meet the client, we will discuss their primary concerns, such as the time they have left, fears about leaving loved ones behind, and what they’ve accomplished in their lives. This first phase addresses emotions and provides support through projects that honor the patient’s legacy. There is a term called deep active listening. Beyond being fully present mentally and physically, it’s holding space, and your entire body solely focuses on the person in front of you. It can take 15-20 minutes to prepare for this—deep active listening is a practice utilized with each client encounter.

In the second phase, I will help them plan their vigil as they go through the active process of dying. How does the client envision that to look or sound? Will there be music or silence? Who will be present, and where do they want to be? Will this be a celebration of life or a peaceful, quiet time? Do they want to be indoors or outdoors? Once the dying process begins, it will be my place to ensure their wishes are honored. I may explain the signs of impending death and the physical process the body endures. Sometimes guided imagery, touch, or music are used t help guide this process. My previous nursing experience will undoubtedly be helpful.

In the final phase, when the client dies, I will help carry out any rituals, traditions, etc., per the client’s wishes. Assisting the family, caregiver, and loved ones- whoever was directly involved, process their grief is also a piece of the final phase of my involvement.

Doulas do not instruct, direct, suggest, or tell. Doulas are guides through this whole process. I chose the name of my business to Beeloved as a combination of beloved and be loved. The sprout signifies new life and the dirt from which we all sprouted. Bees help new life by pollination. I didn’t want anything that resembled a sympathy card. Welcoming and warmth are what I want people to feel when they visit this site.

I’ll write about my first class in a different post. As always, I’ll remain as transparent as possible. Death is a strange word in our culture. It’s quiet and whispered, not talked about openly. I want to change the narrative by talking about it as I learn more about it.

Locusts & the Gift of Time

I don’t honestly even know where to start. The past two weeks have been a whirlwind of feelings swirling around me like a swarm of locusts I couldn’t escape. Sadness stinging my eyes, disappointment constantly wisping by, anger rearing its ugly face no matter how many times I tried to shoo it away.

What do I do with all of this? How do I explain this to everyone who’s supported me these past five years? But, more importantly, how do I get rid of the thick cloud of locusts?

Therapy has been constant this past year. I manage my medication cocktail twice a month with a therapist and twice monthly with my psychiatric nurse practitioner. The “locusts” won’t disappear, but my focus and energy will shift over time. The sadness will lessen, the sting of disappointment and failure will dull. The anger with myself, the situation, and what happened will take time but eventually redirect to where I’ll land next.

I’ve given that so much thought. My original plan was to work with hospice patients, oncology once I had enough experience, then wound care certification. But unfortunately, many of those things require a nursing degree, so I have to reshape how this would all look.

I once took a Lyft ride with a woman who chatted with me on the way to my physical therapy appointment after my stroke. I asked what she did for a living, and she said she was a death doula. I had not heard of that. A birth doula was familiar to me, barely, but not a death doula. Some are called death midwives. She explained that she offered the gift (her word) of time, listening, and support through the start, end and post dying process to the patient and their family. I was so fascinated by this. The gift of time. How often had I felt rushed through even just a doctor’s appointment? Too many to count.

Losing my dream of nursing is something I may never get over, but the idea of giving my time to hospice patients and their families is also a dream. The patient dynamic, conversations, and interaction were always my favorite time of day in clinicals. I loved the stories, the human touch, the undivided attention to the patient.

Where am I going with all of this? I’ve just enrolled (thank you, mom and Bob) in a Death Doula program. What better way to wrangle my favorite aspects of medical care into the gift of time and make it a career? I’m excited about it.

The grief comes and goes in waves. I won’t lie and sit here and say I am fine. I am heartbroken, at times feel lost, and cry out of nowhere when reality once again sets in. But for now, I have something to sink my teeth into that makes me happy. I have friends that constantly check in with me for which I’m so grateful.

This blog will slowly morph into something directed at what I’m doing and away from nursing. So stay tuned. And thank you for hanging in here with me. The support and love and messages I’ve received – are priceless.

I can tell you one thing- this will not take on the look of a sympathy card. That is just not my jam or who I am. it will reflect more of a joyful presence, a calming constant. Pat suggested “Bee Bop A Doula,” to which I nearly spit out my drink. His gift- wit, humor, and undying love he’s shown me through all of this.

A Change Is Gonna Come

This is really difficult to write, but I’ve promised transparency about my health or school or mental health, etc. So here goes.

I took my final on Monday. I passed; however, I needed an extra five points to make up for what I missed on my midterm. Before my midterm, I was going through withdrawals from a psychiatric medication for my Bipolar 2 disorder, and had horrible symptoms. Deep depression and feeling so sick, I got a COVID test. It put me behind three weeks with school content. Once this all passed, I worked my ass off to study and get caught up.

Unfortunately, it wasn’t enough, and I missed passing by 5 points, which meant I needed to make up those points on my final, which did not happen. So I am out of the nursing program. I can not challenge it.

Yes, I can retake the class next year—but- I’d have to pay out of pocket (the last term was nearly $5000) and take the courses before it to keep the clinical skills fresh.

More importantly, there’s also something else I noticed. My retention has taken a nosedive. I had seen it over the past several months. There were things that Pat told me that I didn’t remember him telling me. For example, a friend sitting at my table looked at me funny when I asked her a question about something, and she said I was the one who taught her a funny new pneumonic to remember the concept. I didn’t remember any of that. That happened a few times.

My brain is not retaining as it should. After my stroke, I did not have these issues of this severity during the first year of nursing school. This all started after the swelling brain issue I had last year called PRES. Posterior Reversible Encephalopathy Syndrome. There isn’t much information about it, and I honestly don’t know if that’s what the cause is. But I do know it’s been a very significant issue with studying.

To say I’m devastated is an understatement. I’ve never worked harder for anything in my entire life. So for the next couple of weeks, I plan to rest my brain, maybe visit with family, and regroup. Then think about the next steps. I still want to work with hospice patients, so a Death Doula (aka Death Midwife) program is where I’m looking next.

For now, it stings too deeply to go any further with that. Even looking at my nursing stuff on our table hurts. But I’ll get past this. My amazing hubby reminded me that I am not this exam. I am not this grade. My dad reminded me of how far I got with a brain injury and all my managed mental health issues.

As much as it hurts- hurts- I can’t change it. So, I’m going to figure out where I’ll go next.