Ministering

I listened to a podcast last week that really hit me. These are my notes:

Jennie Taylor, wife of the late Major Brent Taylor, shares ideas on how to minister to those who are grieving the loss of a loved one.

There is absolutely no one-size-fits-all approach, and people are never done grieving. Words like closure and moving on have no proper place in discussions about losing a loved one. Asking, "How are you:" with just the right amount of sugar in your voice and tilt in your head isn't likely to yield very honest results. I'm not a professional counselor or grief specialist, and i certainly don't claim to speak for everyone who's ever lost anyone, but i have been asked to share with you a little of my own grief journey and what has been done or said by those who have genuinely sought to minister to me and my family during our time of loss. Let's talk about what happened, what helped, and what didn't help.

[Her husband had been deployed in combat four times, and, then, less than two years before this broadcast was recorded (in about September 2020), he was killed by the enemy during a military hike long AFTER the war had "ended". He left behind seven children ages newborn to 14. His deployment would have ended just two months later.]

Most of us don't know what to do when we're faced with grief, and we really don't know what to do when someone we love is faced with grief. So, sometimes we do nothing. We're worried we might say the wrong thing or do the wrong thing or make it harder or maybe offer an offense which we didn't intend. We're all eager to help, and yet, we don't know how. We get paralyzed in our fear that we might inadvertently actually make it harder, and so, we kind of dance around it and go about our day.

Here are some of the things very well-meaning people said to me that really didn't help:

Grit with Grace: Grief is hard work. We need grit, but it doesn't come easily. We comfort each other by strengthening each other. The real grace isn't elegance or beauty, but the grace of God.

He's in a Better Place: I know that place, and I want to be there with him, but I'm here in an ugly place doing an ugly thing, trying to survive without him, trying to raise seven kids and help them through their grief, trying to pay all the bills, trying to figure out all his passwords so I can manage our household, trying to get the water heater fixed, trying to keep the car running...

My husband is a part of me. His purpose did not change when he died, and neither did mine. I long for the day we can be in the same place again. But it's going to be a long time and a long road before that happens.

Your Best Days are Ahead: I don't like thinking that my best days are going to be alone. The future is overwhelming. Just focus on today. God doesn't move in linear time. Future me can take care of future things. Looking forward alone is very scary. Take it one minute at a time.

Heaven Needed a Hero: So true. I know my husband's best days also are ahead. But God did not take my husband home because He was shorthanded. My family is shorthanded. We can't erase grief. We can't put a bandage on it. God doesn't necessarily make things happen, but he can make beauty out of things that happen.

Let Me Know if You Need Anything: I don't know what I need. Keep a notepad so you can jot down things you need and then give people ideas when they offer. A better way to ask that question is to ask things you think they need and let them choose how you can help. Give simple choices.

Finding Closure and Moving On: Who in the world wants closure when they've lost someone they love? I don't ever want to close the door on my husband. I move forward WITH my husband. My husband affected everything I've become for the last 15 years. I'm opening the door to a new chapter.

Holidays Can Be Hard: Even harder than holidays are the milestones. The first Sunday at church without him. The first birthday without him. The first back to school without him. Birthdays, anniversaries, family traditions, those moments that were so full of life are now empty, lonely, and painful. The first month without him. The first wedding anniversary without him. The first year without him. Those days are the days to send a text or make a phone call or invite for a meal or even just drop off a note. Let that person know you are mourning with them. Instead of feeling alone on those days, I know someone I love is going to be remembering with me because they don't let those days pass without reaching out to me.

Elephant in the Room: Whether you say anything to me or not, I still remember my husband. When you talk about him, even if I cry, I know it means you love and miss him, too. Please don't hoard your memories. Tell me about the times you shared with him. Tell me about the things I didn't know about him. Never hesitate to talk about him. I want to hear! Even if I cry. Don't be afraid of emotions. It's healthy. It's healing.

[Here, she also spoke about the ways people have tried to help her children. She emphasized she wants to be the one to help her children through their deepest grief, but she praised the people who invited her children for game night or movie night or came to watch their games or performances.

One of her children asked: "What good does prayer do? I prayed Daddy would be safe every morning and every night, and it didn't work." She shared the story of Shadrach, Meshach, and Abednego. "But if not." Everything hard helps us to become more like our Savior.

I do not have children living at home, but I do have my own kid point to add. Last week, I got to teach crochet to one of the 8-year-olds I taught in church for four years. This week, I got to ride a bike with one of the 8-year-olds I taught in church for four years. Parents of children I taught and teach have been reaching out to me consistently, and man, what great experiences we are sharing.]

Fix it vs. Face it: You can't fix the fact that my husband died. People can't fix that. The Savior heals. The Savior makes us whole. The Savior compensates with blessings. What if Lazarus had not died? Raising Lazarus was a miracle that offers hope. What would the world be like without that miracle? The ultimate raising of the dead, of course, occurred prior to the opening of the tomb. But what would that lesson look like without the healing of Lazarus first to better help followers understand what was about to happen?

When we face extreme grief, the Savior allows us to minister to each other, He allows us to show His love to those in need.

I get to feel the power of the Holy Ghost helping me change my mind when I think my loss is such a horrible, awful thing. I am grateful the Savior allows us to use our heartache and our tragedy to lift and heal and to provide hope to those around us. When we feel extreme despair, Christ will send extreme hope, extreme love and extreme promises, that through His atoning sacrifice, all will be made well.

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Coming Back to Life

(affiliate links to my designs)

I'm rediscovering me.

Never Stop Serving
by Snowcatcher

In some ways, it's difficult to go back to "normal". I used to tell my kids normal is a setting on a washing machine, not something we should try to emulate in real life.

"Normal" doesn't seem to be attainable anymore in my life right now. I know I will heal in time, but the pain is always going to be there.

So I'm trying to find ways to create that help me heal. I hope what I create can help others who are in pain heal, too.

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Grief

Less than 72 hours after he came home, Lizard valiantly completed his Parkinson's battle.

It's 3 a.m. I've been awake since 1 a.m. I can't sleep. I wake often in the night to help Lizard, and he's no longer there.

I miss Lizard. I want back the Lizard who didn't have Parkinson's. The Lizard he is now. Now that I can't see him. Hold him. Be wrapped in his arms.

My gosh, I miss him so much.

I didn't think I'd have to go so long without him. I thought we'd have more time.

I know he is whole now, and I know we will be together again one day. I'm trying to cherish and be thankful for all the adventures we shared. I'm trying to remember how exhuberant he was every morning until a couple of years before he was diagnosed with Parkinson's. I'm trying to remember every joyful moment with him. I'm doing my best to be faithful and hopeful. There are moments of exquisite joy. There are moments of excruciating agony.

I would never want him to have to endure that suffering again. But I miss him so much.

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Forever Knocks

I suppose I owe you a bit of an explanation.

Lizard went into the hospital 10 days ago, and the determination at the time and for the next three days was he would need to be in a long-term care facility. I was devastated.

Within four days, the goal changed from long-term care to hospice. I had seen this coming, but I thought I had more time. Much more time.

Lizard is at home with me now, and we are honoring his Advanced Care Directive. I'm doing my best to try to make him comfortable and to be there for him.

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The Most Difficult Season

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Park It, Son

This isn't the blog post I had planned for today. I had to rearrange the schedule after I finally got to watch "Still", the Michael J. Fox documentary I've been wanting to see for about a couple of years now. My emotions right now are all over the charts.

The language was so bad, I would have turned it off had it not been such an important subject matter for my family. The documentary was so painful to watch, and yet, I needed to see it. I'm glad I watched, and I wish I hadn't watched. Does that make sense?

"You can't pretend you don't have Parkinson's." OUCH. My tears would not stop falling. And I was so friggin' angry at the woman who made me fight 2.5 years for Lizard's disability classification because, in her words, "He can put stamps on letters. He can wear diapers." Oh, just pretend you don't have Parkinson's. No one will notice. Your dignity means nothing.

I feel like I grew up with Michael J. Fox because he is just a couple of years older than me, and although I didn't watch much TV or many movies back then, I feel like Michael J. was in everything I did watch. This documentary made me wish even more I had grown up with Lizard so we could have married 20 years earlier and shared an extra two decades of awesome adventures. I still think we could have had the most awesome cycling kids!

Tracy Pollan Fox is one of my heroes because she has stayed with Michael J. all this time, even when he was in denial and making it worse. She has always been his best friend. 37 years. That helps me know I can make it, too. I can do this.

We can do this. Yes, there are going to be hard days. Hard weeks. Hard years. But we can do this. We will do this, and do it well.

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Faith over Fear

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Friday Fortius

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Friday Fortius on Thursday

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Date Day

We had planned to go to the Labor Day Lift Off in the Springs on Saturday for the balloon glow, when they light the balloons up at dusk but don't fly. We went for this event last year, but that was back when Lizard was still having horrific hallucinations, and we weren't able to stay long enough to photograph the balloons reflecting in the lake as planned.

We checked the Colorado Springs weather forecast Saturday morning, and it wasn't looking promissing. We often joke about being the jinx at any balloon festival. We once went to Albuquerque for four days, hoping the balloons would go up at least one day, and high winds cancelled all four days, as well as a fifth, had we been able to stay. This often happens at any balloon festival we try to attend. We don't do it much anymore because road trips are so hard on Lizard, but the Springs are so close, comparatively, I do try to go for at least one event each year if he's feeling up to it. Thank heavens he loves balloons as much as I do. He often will sacrifice comfort to try to make it through just one launch or one glow. (Tomorrow's photos are from previous years; Lizard did not feel up to a road trip yesterday for the final day of the Lift Off.)

Lizard kept asking me if we could have caffeine, which he takes for tremors. Caffeine would make me tremor for hours, but for whatever reason, it has the opposite affect on people with Parkinson's. Some patients even have caffeine prescriptions. I tried to encourage Lizard to wait until evening for his high-octane caffeine beverage, which actually helps him sleep, and he kept asking if WE could have caffeine. After about 15 minutes of a conversation I felt was going nowhere, it dawned on me he was asking for Café Rio, one of his favorite restaurants. We haven't gone out to eat much at all since I retired, thanks to the expense but compounded by his anxiety and claustrophobia in the car. Since it looked like the balloon glow was going to be a bust, I thought it might be fun to treat him. Off we headed to Castle Rock, which once every month or two was our "date day" on Saturdays before I retired.

We ate half our chicken (his) and veggie (mine) bowls in the restaurant, which we rarely did back before retirement. We would take it home to eat, or eat in the car in the shade if the weather wasn't too hot. This beautiful Saturday afternoon, eating in the restaurant was very peaceful. We arrived just before 4, and the restaurant wasn't packed like usual. There were only two other diners. We didn't sit under the air conditioner, which really bothered Lizard the last time we ate in, and the music wasn't too loud this time.

The day was sort of like date night. The whole day, actually. Lizard was considerate of me. That was missing this time last week. (He had shut me out of the bedroom because he thought I was a hallucination. He wanted his best friend back as much as I long for mine.) He doesn't often realize I have feelings anymore, and in my burst of grief (after I finally got him to sleep), I cried myself to sleep, then felt guilty the next morning for being so selfish. Saturday was a complete turnaround. I know moments like these are extremely fleeting, but Saturday was so special, and I so needed it. I had prayed to see a glimpse of my best friend again, and that's exactly what I got. I want to shout from the rooftops that Lizard was back for a day.

After we got home, I laid on the love seat because my back was so sore. Lizard tried to cover me with my fleece. He did think the homeless people he thinks are living in our house rent-free had peed on it, so he wanted to wash it first. Then he asked it if was mine because he thought someone else was using it, but he wanted to make me comfortable. That was such an awesome moment. Gigantic. This is the guy I married, and he came back to me for a few minutes. It was precious. Thank you, God, for giving me back my sweetheart for a few precious hours!

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30-Plus

One year ago, one of my snarky co-workers greeted me with, "You celebrate 30 years and then announce you're retiring the next day? Aren't you special?" She wasn't in the loop. (I'd given more than two months' notice, plus, I stayed on an extra four weeks at my bosses' request. We just didn't publicly share the scoop because this wasn't an easy change for me.)

This woman wasn't a close friend. Most co-workers called her Barracuda because she was always chewing out someone. Our long-distance work relationship probably was a bit of a thorn in both our sides. She was always stressed out by missed deadlines, and I was continually stressed out by missed deadlines outside of my control. She had no clue what had been going on in the Snowcatcher household the previous six months. She only knew my monthly paperwork was repeatedly late, and she probably thought I didn't care. She apologized when I spilled discreet, watered-down details, but that was the last time we spoke, and that's okay with me. I'm trying to focus on the positive now, and I am so grateful that stress is gone.

The rest was much harder to walk away from. You can't work in the same place for 30 years without developing a lot of close friendships and hard-to-break routines. And then there was that whole paycheck thing. The overwhelming fear of trying to run a household on my own with stunted social security because I had to retire early. I honestly didn't know if I could do it. The progression of Parkinson's literally had me shaking in my shoes and sleepless in the suburbs.

One year ago today, I said goodbye to my bosses, my co-workers, my brand new office, my paycheck, my weekly commute, my way of life, my ticket to weekend warrior adventures, my health insurance, my life insurance, and, by golly, those blasted monthly deadlines.

I've wanted to share at least part of the story since about Thanksgiving, which was the one-year anniversary of the train of our lives jumping track. I felt as if the train kept raging forward through the roughest terrain I could imagine, with no tracks, no refueling points and no map. It's taken me ten months to grow into this new chapter and construct a whole new recipe for contentment.

I started a new book about a week after the life change anniversary. I'd successfully completed (virtual) PTSD counseling, and I thought writing about what happened (here on my blog) and why life took such an unplanned detour would further help me heal. Plus, I love to write. Or at least I used to. I got to keep my standing desk when I retired; it was mine, not office property. So I don't sit down to type. Sometimes I think perhaps that's part of my problem when it comes to finishing electronic things. It's difficult to slow down when you don't sit down. Ha ha.

Yes, I can laugh again. And it feels good. Life is not at all what we planned, but we're adjusting and surviving. We're going to get through this. We're not going to give up.

Seven months ago, though, I still wasn't ready to "talk" about the whole Parkinson's nightmare. I mean, I did, with my counselor, my bishop, my ministering sisters, my two favorite neighbors, two of my favorite penpals, my mother-in-law, and eventually even my mom. (My dad had years earlier requested all of us kids stop telling Mom any of our problems because the worry was "killing" her.) There was still too much pain for me to begin telling "the world" about what happened. Too much loss. Too much grief. Too many wounds still too raw.

And let's face it. Parkinson's does not play nicely. Things are so much better now, but Parkinson's can be unforgivingly unpredictable. It's difficult to plan anything. It's getting easier to roll with the changes now. But Parkinson's assumed the Barracuda job vacancy in my life. Our lives. I continually remind myself there's someone in this wicked game in worse situation than me. My sweet Lizard is the one who's really suffering.

That book I started back in November has 20 pages so far. Wow, it seems like I've written so much more than that. But I just checked, and that's all she wrote. The bulk of what I write must be in my journal...

I used to tell my bosses we'd have four or five bad days, then two or three good days. Now it can be four or five bad weeks, then maybe two or three good hours. Or we might get a solid week of heaven, followed by a night that seems to have taken its cue from some of the drama or horror movies Lizard used to enjoy.

This probably is sounding a lot more like an endless maze than a clarifying explanation. But I guess that's why the book isn't going anywhere just yet. Interruptions often come every few words of typing, and it's easy to get lost in memories as well as live action.

To keep from blabbering on and on, I guess I should type what I intended to write when I turned on the computer.

In November of 2023, Parkinson's took a turn for the worse, and relentless rapid decline forced me to give notice at work in April of 2024. I wanted to make it to my 30th anniversary in June if I couldn't make it until my 65th birthday. Things got so bad so fast, I wasn't sure we could last two weeks, much less two months or... until my next birthday. All the prayers on our behalf carried us through June and an extra four weeks of employment so I could train my replacements. Yes, replacements. It took more than one person to replace me.

During my job death march, I kept thinking perhaps Lizard's neurologist would be able to prescribe something to help Lizard feel better. We communicated regularly on the patient portal, but a new medication wasn't prescribed until I was able to full time monitor (and document) any changes. Ultimately, I decided I would rather spend what pleasant time I have left with Lizard with Lizard, not distracted by work. Or, unable to meet his needs when he needs as opposed to, "Just a minute, Sweetheart; I'll help you as soon as I finish this project."

After I retired, Lizard began a new medication made specifically for Parkinson's patients experiencing hallucinations. The specialists warned me we likely wouldn't experience any relief for six to eight weeks. Two weeks into the new med, hallucinations ceased, and for about six weeks, I had my Lizard back.

Parkinson's cruelly began inching its way back into the picture, and hallucinations (and delusions) are once again an everyday thing around here. It's still better than it was a year ago. By far. Last year, he was afraid to be in our house because he thought we had 30 squatters crowding us out, and they weren't friendly. Now, he thinks there's a girl sitting in the bookcase watching me crochet, and he often thinks I have a dog with me. We have no dog. With Parkinson's, every day is a new adventure. Yesterday's hallucination was bananas all over the floor. (There are no bananas on our hardwood floor.) Today's was origami all over the floor. (There is no origami in our house.)

An adult suffering from late-stage Parkinson's can sometimes seem like a two-year-old foster child, exploring how many new different surprises they can hurl at you without warning. Yes, I am extremely experienced in that kind of life. Just when you think you've seen it all, boy, Parkinson's is trying to get someone to hold its root beer again. It doesn't stop. It's that derailed train jumping the track again and laughing the whole way.

A year ago, the plan was to obtain certification to become my own home health nursing assistant. I could get paid to be a caregiver and trade my hours for in-home care so I could finally get some sleep. By the time I retired, I could no longer commit to the two full in-person days of coursework (I would have been able to complete the majority of my classes online, or at least I thought I could), much less the two weeks of shadowing a nursing assistant. I could no longer leave Lizard alone for any amount of time.

A year ago, I feared I would have to sell our house and move us into assisted living because I couldn't get by on no sleep anymore. I had no idea how I would pay for care. Buying my own health insurance until I turned 65 added to the financial trauma. I couldn't find home health willing to help, and I couldn't afford it anyway. It got to the point I was afraid to go into the restroom alone for a few minutes. I couldn't shower for about six weeks. I heard rumors some assisted living facilities refuse to accept Parkinson's patients with hallucinations.

To top off everything, Lizard had zero quality of life, and there was nothing I could do about it.

Nothing except hang on and pray.

The absence of a work schedule enabled me to sleep when Lizard slept. He typically will fall asleep at about 6 a.m. each morning, and we both can get about three hours of really good rest at about that same time almost every day. The new med is helping with sleep, and sleep helps prevent blood-curdling hallucinations. We're both getting about five to six hours of sleep each day now. It's not always on Mountain Time, but, heck, it's always 10 p.m. somewhere, right? We sleep when we can, and that's good enough for now.

Church helped. Prayer helped. Neighbors helped more than I can ever repay. Counseling helped. Sleep helped.

I try to lead Lizard every day in speech therapy, physical therapy, occupational therapy and daily exercise. He's more cooperative now because sleep has helped so much.

I've had to let go of my Antarctic, Hawaiian and Wave dreams. We've both had to let go of bicycle tours and fund-raising. We've become a little bit shut-in because crowds and anxiety amplify Parkinson's.

I'm continually trying to come up with new goals and dreams. I try to set realistic and achievable goals now so Lizard can experience success. Sometimes the best we can do is a walk around the block. But sometimes we can squeeze in a little hike or bicycle ride. He calls me his drill sergeant, and sometimes, that's exactly what it feels like. Laughter really is the best medicine, so we try to overdose every chance we get. It doesn't happen often, but it does happen.

A year ago, I wasn't sure either of us would survive the hallucinations. Now, the most painful time is when I'm sitting with him in the evenings, when he's sundowning (yes, I learned a new word!), and he asks me to find his wife for him.

I've been able to keep up with snowflakes most of the past year, I think, and I'm hoping to sew again one day. I'm hoping digital designing and quilting will find a way back into the schedule at some point. For now, I hear my garden calling, and I don't have to wait until I get off work. Sometimes, Lizard can even help.

It's not the life we planned, and it's certainly not the life we would have chosen. But we are both survivors, and we are going to get through this. With grace. With dignity. With love. Lots and lots of love.

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