One Week Later... Expressions of Grief

It's been a little over a week since Mom died. At first, I thought my grief wouldn't be so bad. I had spent so much time with her that I didn't have any regrets. I said good-bye to her multiple times, in different ways. And I knew that she was going to be in a better place, with her arm and all of her other issues finally healed.

In fact, I was a little concerned that I wasn't more upset. There were times I thought that something might be wrong with me. 

I think it was at least partially because I stayed incredibly busy with her Celebration of Life. I can't let anything be the standard if I can help it... I must make it special, even over-the-top. 

So, not only did I pick out (and edit!) photos for her slideshow that would run during the service, I ended up with about 340! Not only did I choose what she would wear, I put a lot of thought into it. She had already picked out the gown she wanted to wear (of course, she wanted to be comfortable) but I put a lot of thought into which robe and slippers to get for her. 

Someone in my household had joked about giving out dominoes to remember her by... and so I once again went above and beyond. My husband said we should write her name on each domino. That sounded like a great idea and I realized it wasn't enough.

I thought we could add a saying on each domino along with her name. Then I went even crazier. I used AI programs and searched with many keywords to find very short expressions (dominoes are tiny) that summed up her characteristics. I ended up writing tiny phrases and Mom's name on about 90 dominoes!

One day when we were discussing the Celebration of Life, I shared my first post in this series with her, "The Roller Coaster of the End of Life." I just wanted it to be a sweet moment between us. To my surprise, she insisted that I read it during the service. She had wanted all four of us siblings to speak... instead, I chose to sign the song "Scars in Heaven" by Casting Crowns. She wanted me to do both.

It was an incredibly long post (which you know if you read it) so I needed to edit it. Add that to practicing the song, which had a lot of metaphors that I had to translate into ASL and learn several new signs.

Then I decided I really wanted to add "Make it Well," by MercyMe, which meant another song to learn to sign. I decided to sing it too (with the regular track) so that was a challenge as sometimes the signs don't match the words.

But the big project was her program (I never did figure out what to call it.) I found a copy of my dad's and realized that it was very, um, basic. It did the job, but that was it. Mom wasn't basic in any way. Her program had to be much more. 

Instead of four pages (regular paper folded in half, front and back), I did eight. The first page had her picture, dates of birth and death, and the service time and place. The second page was what went on during the program (which was a debacle in itself) and a thank you for those who interpreted the service for my Deaf friends.

The third (or seventh depending on how you looked at it) was the lyrics for "Scars in Heaven." That song fit Mom so well that I wanted everyone to be able to read it. The last page listed the pallbearers, a thank you to everyone who came, and a note about how people could download any of the pics from the service from my website (after all, many of them were in them with Mom). 

The insert included special photos of Mom on one side and the obituary on the other, each basically taking up two pages.

Even with Canva, it was a lot. I'm very perfectionistic when it comes to work like that and there were several changes that meant I had to redo parts I had already finished. 

Then there was the paper issue. I had card stock I planned to use to print it, but it was a cream color, and the photos and graphics looked washed out. It wasn't expensive to buy some white card stock, so I did... three times. The first was out of stock. The second never showed. So, it took three tries to get it. I was nervous that I wouldn't get it in time, but I did.

Thank goodness there wasn't an issue with the ink. ;-)

Anyway, I didn't mean to go into all that. I just wanted you to know how busy I've been - and why I wasn't grieving. I had too much to focus on.

Then the service was over, and I felt lost.

I was on our worship team that week and even though I didn't feel a bit like going to practice, I went.

However, on Sunday morning, I woke up with my stomach absolutely killing me. I think it was the stress of the week plus extreme exhaustion after the adrenaline was finally gone that got to me. I wanted to play so badly... it was the first time in, well, in decades since I was on a team in another life, that I could go to church without worrying about Mom. 

But I couldn't go. I felt so nauseated I had to put a garbage can by the bed. I ended up staying in bed until my husband got home from church and he wanted to eat lunch together. I still felt bad but sleeping all morning gave me some energy and I was able to get up and do a few things that afternoon.

Was that an expression of grief?

That I still can't sleep through the night just like when she was so bad that someone had to be with her all of the time - is that another expression of grief?

In fact, was staying so busy with everything that didn't actually have to be done - but I felt it had to be done - last week also an expression of grief?

Of course, I have the "typical" expressions of grief... wanting to tell her good news, and then crying when I realize I will never get to do that again; wanting to ask her opinion, and then crying when I realize I will never get to do that again; wanting to find out what she wants for supper, and then crying when I realize I will never get to do that again.

I've been going through her clothes. It has to be done and I'm the one to do it. I'm keeping more than I imagined I would. My daughter had a good point and one that after she shared the idea, I remembered I did it with her baby clothes. We keep anything we might want. We can always donate some of it later - but we can't ever go back and get the things that we remember her by once we've given them away. 

In fact, being so methodical when going through all her things - is that one more expression of grief?

I have one more thing I want to share before I leave this and get back to all the different expressions of grieving... one of the last really fun things that Mom and I did together were to pick out some new glasses online for her. Totally unlike the past, well, I guess all the pairs of glasses she had ordered before, she wanted something fun.

We ended up picking out purple, octagonal oversized glasses. It took a couple of weeks to get them. I was so worried that she would pass away before she ever got to wear them.

In fact, it ended up that she was able to. She got them on about the third day of her last few weeks - when we all knew it was a matter of time. She looked so cute in them! We took several pictures and showed them off any time a friend came by to visit (to say good-bye). She loved them so much.

However, as much as I wanted to keep them, I knew that I probably could get a refund for them. After all, she didn't need them and they cost about $100. That much money is a big deal for us. So, I went the practical route and got on a chat with Zenni, where she bought them, to see if an exception could be made on the return policy since it was slightly after a month.

During the chat, I realized that it was going to be much, much harder than I thought to send them back. But I was torn - the money was important too. After all, I had the memory... did I really need the tangible glasses?

I knew I did.

So, I was brave and I asked if I could have the refund and still keep the glasses. I reminded the person that was helping me (who was AMAZING, by the way) that they would just be destroyed anyway. They couldn't reuse them at all. In fact, they would lose money because they would provide the shipping label. 

I did this while I was ugly crying. Of course, it was a chat. She couldn't see or hear my ugly crying. But she felt my heart.

At first, she didn't think she could do it, but she tried. I asked if she could talk to her supervisor about my situation and see if an even greater exception could be made. 

AND THEY DID IT! 

It's truly one of the happiest moments I've had in the last month or so. I'm so thankful to Zenni for listening to me, empathizing with my situation, and giving me both what I needed and what I wanted.

Just another expression of grief... but this one turned into joy.

Maybe that's what happens as time passes. More and more of these expressions of grief turn into joy. Instead of being sad that I'll never see Mom in her favorite robe again, I'll be able to smile about the times I did see her in it. Instead of being sad that I can't talk to her anymore, I can be happy about the many conversations we had. 

And even though I might not get to see her wear the glasses that we had so much fun picking out ever again, I will always have the memory of that day and how cute she looked when she finally got to put them on. 

Maybe there is hope, peace and joy even within the expressions of grief.

A Tribute to My Mom, Judy (AKA - The Obituary)

Judy Gilliland Hill - AKA Wife, Mom, Friend, Church member, and “Cheater" - had five major passions in life: Jesus and church, family (especially Dad), friends, travel, and playing games (and being accused of cheating while doing so).

With a smile and laugh that could light up a room, she was quick-witted, had an incredible sense of humor, and took life as it came, no matter how good or bad. She was liberal with I-Love-You’s and hugs. Just about everyone she met became a friend. She collected owls, preferred wearing gowns and bathrobes whenever possible (that just had to match), and her favorite color was purple (contributing to how much she liked Grapico).

All this was despite having numerous health issues throughout her life, including having a full shoulder/humerus/elbow replacement at 87-years-old. Nothing kept her from living her life to the fullest.

Born on April 13, 1938, at home in Blount County, AL, Judy lived 88 wonderful, fulfilling years. She joined Jesus and reunited with her husband on August 2, 2026, from her home in Trussville, AL.

She married the love of her life, Oliver Jackson “Jack” Hill, on February 1, 1957. Jack (“OJ” or “Orange Juice”) was her rock. She has missed him every day since he passed away and has been dearly looking forward to holding his hand in heaven as she did for their 66+ years of marriage

In 1958, they became pregnant with their first son, Michael Jackson. David Arthur followed soon after. Nine years later, Tracy Dion came, and then Daryl Wayne completed the family. For about the first 15 years of marriage, Judy was a stay-at-home Mom. Her life was her husband and kids. Then she also found a job that she loved, becoming a bank teller and eventually a much-valued trainer.

Travel was always important. Though not well-off, the couple prioritized annual family vacations (often including friends and extended family) to the mountains, beach, or even occasionally across the country. This continued as their children got older and grandchildren entered the picture.

There will be a Celebration of Life service at Jefferson Memorial in Trussville, AL at 2:00 PM on Saturday, August 8, 2026. Family visitation will be at 12:30 PM and friends’ visitation will be at 1:00 PM. There will be no graveside service.

Judy requests that everyone wear “cool, colorful, comfortable clothes.” She didn’t specifically request this, but it would be fun to wear purple, if you have it.

Her family would greatly appreciate it if you could bring a card or note with a memory or two that you have of Judy. Also, in lieu of flowers, Judy asked if you would donate to Blanket Fort Hope, a one-of-a-kind home for girls who have been trafficked. You can find out more about the organization at www.BlanketFortHope.org. Go to https://blanketforthope.kindful.com/?campaign=1338047 or scan the QR code below to donate in Mom's name.

***To see and download photos included in the slideshow at the service, go to https://NovelPhotos.instaproofs.com/InMemoryofJudy

Still Waiting... The Long Road to a Loved One Passing Away

From my small sample of those whom I've talked to about this, it seems like a universal feeling. A brief amount of research seems to back this up. Most are like me and feel guilty, but it is apparently a common perspective...

I'm not only ready for my Mom to go ahead and pass away, I also want her to.

Let me explain before you start judging me.

My mom found out she had lung cancer last December. It's now the very end of July. That's eight months. When the PET scan showed that the mass she had for years, that had barely grown in that time, had gotten much bigger, we had hope that she might be one of the few who had a year (at least). 

She had beaten death so many times before. Once she even coded (and saw Jesus and my crying brother at her bedside, by the way). She has had pneumonia numerous times, and several were touch-and-go. She had four major surgeries at 87 years old, with one lasting about 10 hours. That's on top of so many other medical issues, surgeries, and procedures throughout the last few decades of her life.

She chose not to have any treatments... She didn't even care about a formal diagnosis because it was invasive and she would have to be under anesthesia for the fifth time in 6 months to get it (very, very hard on someone elderly with all of her medical conditions). 

When I became realistic about it was when I became brave enough to look up the prognosis for those with lung cancer. I found out there are two main types, and with one, a person could live years. For the other, eight months was a stretch. 

Still, I thought that she had more time. 

Two and a half weeks ago, everything was normal. My husband and I went on a very rare date purely because we had a coupon at a place where we also had a gift card from this past Christmas. We went for an even rarer walk around the neighborhood at 9pm that night because I was restless and knew I wouldn't be able to sleep.

I'll never forget something I realized when we almost got to the main road where we would turn around. I looked around and told my husband, "You know? One day soon this house, this neighborhood, this time in our lives will be just a memory." 

Then we went back to talking about other aspects of our life together.

The next morning Mom woke up unresponsive; her breathing was, um, different; I knew things had changed.

But she had been there before. Not exactly like this time, but similar - showing signs of being at the end of life.

And each time she came out of it.

However, each time she came out of it, I knew one day it would happen that she wouldn't.

This time there's no doubt that she's not coming out of it. She hasn't eaten in days. She hasn't drunk more than a few sips a day for a few days. She has gone back to being unresponsive the majority of the time. 

I knew we were close.

I guess 15 hours ago (give or take a couple of hours) she again looked like it was imminent. The biggest indicator was that her oxygen went down. I called my brothers and her pastor and asked them to come.

And then she perked up. 

It was very slight, but she definitely knew they were here. She even said a few words during that time. 

Eventually they all left, and my husband, daughter, and I were left to watch her and let them know when they needed to come again.

In fact, I was writing this and heard something different from her. (Yes, I wasn't at her bedside at the time. I've sat at her bedside for hours so far, and one can only do that for so long without going slightly bonkers - at least I can't.)

I jumped up in the middle of the word "mass" in the fourth paragraph when I realized she wasn't breathing. (I know because it was almost funny coming back after leaving during the middle of a word. I don't think I've ever done that before.)

Her oxygen level was lower than it had been before - her heart rate was higher (which is unusual because she has a pacemaker). 

But as I had been fooled before, I waited - and waited - and waited... until I felt sure that I needed to call my brothers.

(Funny how I titled this post "Still Waiting" even before this happened.)

Anyway, the final straw was when her O2 got to 19 before going back up to the mid-30s. She started breathing "like a fish," which I hadn't completely understood until I say it. I KNEW this was it. So, I asked my husband to call them.

I turned on some music I knew we both would enjoy...

And got prepared to wait even longer.

The music changed things. Her oxygen started going up. It finally leveled out in the 60s. I waited a little bit and then texted them again to tell them what happened. I told them to just wait to come (there's that "waiting" again!) until it dropped back down.

It's about 45 minutes later and it's still holding steady. Her breathing has gone back to what has become her normal. 

By the way, for those of you who are in the same boat, I've learned that there is a lot of variation in signs of the end of life.

Keep in mind I'm not a medical professional so do your own research or talk to someone who knows to confirm what I'm about to say. My point is that it's good to remember that everyone is different in the way and timeline in leaving this life.

One classic sign the end is near is low blood pressure. My mom's has been high - occasionally really high. These spikes in blood pressure were also when her oxygen was low. 

I didn't understand until my daughter and I were discussing theories on why she was hanging on so long. She mentioned that her brain just had to be deprived of oxygen, but her brain stem was still functioning - and that's where the autonomic functions of the body are located (blood pressure being one of the main ones).

My mom has POTS, a form of dysautonomia. In other words, her autonomic nervous system hasn't worked correctly in decades. Her blood pressure fluctuated each day from low to high. Instead of having blood pressure medications to lower it or raise it, she had both and took them depending on what it was at the moment.

I looked it up, and yes, that is a thing. With someone with dysautonomia, an indicator of it being the end isn't low blood pressure. In fact, it can shoot up. 

Another difference with Mom is that she has a pacemaker. That also changes the typical end-of-life signs. Until yesterday afternoon, when her pacemaker started flaking out, her pulse rate was a steady 75. She was on oxygen, so her blood flow kept going to her extremities. (Purplish extremities are another sign the time of passing is close. Mom's have stayed the same color.)

Yesterday afternoon it started varying from 75, but not by much. This morning it went up to 89, a big spike for her. That's where it was when her oxygen was 19. My theory on the physical reason she went from being so close to death to then having steady vitals is that her pacemaker kicked back in (even though I still think the music was part of it... somehow.)

One last thing for those who may be in the middle of similar experiences: having a pacemaker with a defibrillator adds an additional step at the end of life. The purpose of a defibrillator is to shock the heart when it goes out of rhythm. For someone dying, that means it will go off when the heart muscle starts to die due to lack of oxygen. It causes a minor shock to the person. 

It did that yesterday to Mom. It wasn't a bad shock, and it didn't hurt her. But both her hospice nurse and I saw it. She got a special magnet that deactivates the defibrillator. If you have that situation, make sure you check into how to do that for your loved one.

In other words, don't take what the Google and the booklets and even the nurses tell you. There are special circumstances that affect all this.

So, even more waiting........

The Roller Coaster One Week Later

The roller coaster has continued for a week now... This time a week ago, I had absolutely no idea what was coming.  

In fact, last Monday night my husband and I went out to eat (a very rare thing lately). Afterward,  we went for a late-night walk on our street (an even rarer thing). I don't know why I did it,  but I remember remarking that one day this would be just a memory - this street,  this house,  this period of such pain, struggle, but many good times. 

I'm in bed with Mom again right now. (It might be the last time she sleeps in her bed.) She had a big rally yesterday where she was really lucid,  wanted to eat, and actually stood up on her own. I'm thankful that I knew what to expect, but even knowing doesn't make it hard to keep in mind that she's not getting better, that it was just a blip on the road to heaven. 

It's a strange dichotomy at the moment.  I hear the pulsing noise of the oxygen concentrator while also listening to some beautiful hymns. (That I consider them beautiful still amazes me because for several decades I've hated them. But that's a story for another day.)

My husband came down a little bit ago to help Mom transfer to the bedside commode. I look around and see all of the equipment we rely on now. The bedside commode, the waterproof pads on the bed, the wheelchair, the hospital bed outside the bedroom... all reminders that she's in this stage of life. 

On one hand, I can't wait to get rid of all this stuff. On the other. I know what that means... and I'm very willing to put it off a little longer.

I'm recording and taking videos of just about everything. That's how I remember, and this is a time I desperately will want to remember. 

One thing I wasn't able to take a video of was her getting into bed. She has a high bed with side rails. The way she gets on the bed is to sit on the side, put her feet on the side rail, and push herself up. 

Every time she does it, I think of that scene in the movie "Titanic" where the elderly Rose steps up on the rail of the boat to throw the Heart of the Ocean (I think that's its name) into the sea. I've always thought she was so beautiful in that scene, with her wrinkled bare feet and wispy hair.

Mom is also that beautiful. She has an amazing smile that lights up a room. However, she absolutely hates her hands and feet because she has severe arthritis and they are crooked and swollen in the joints. 

I think they are beautiful. 

That reminds me of a song I'm planning to sign (while my daughter sings it) at Mom's Celebration of Life. It's called"Scars of Heaven" by Casting Crowns. It sums up Mom's life so well, especially due to the huge scar that runs all the way down her right arm.

This is the YouTube URL: 

    https://www.youtube.com/watch?v=NiJUE9Eii0Q&list=RDNiJUE9Eii0Q&start_radio=1

And here are the lyrics:

If I had only known the last time would be the last time,
I would've put off all the things I had to do.
I would've stayed a little longer, held on a little tighter,
Now what I'd give for one more day with you.

 

'Cause there's a wound here in my heart where something's missing,
And they tell me that it's gonna heal with time.
But I know you're in a place where all your wounds have been erased,
And knowing yours are healed is healing mine.

 

The only scars in heaven - they won't belong to me and you.
There'll be no such thing as broken, and all the old will be made new.
And the thought that makes me smile now, even as the tears fall down,
Is that the only scars in heaven are on the Hands that hold you now.

 

I know the road you walked was anything but easy.
You picked up your share of scars along the way.
Oh, but now you're standing in the sun, you've fought your fight and your race is run.
The pain is all a million miles away.

 

The only scars in heaven - they won't belong to me and you.
There'll be no such thing as broken, and all the old will be made new.
And the thought that makes me smile now, even as the tears fall down,
Is that the only scars in heaven, yeah, are on the Hands that hold you now.

 

Hallelujah! Hallelujah!
Hallelujah! Hallelujah! 

For the hands that hold you now.

 

There's not a day goes by that I don't see you.
You live on in all the better parts of me.
Until I'm standing with you in the sun, I'll fight this fight and this race I'll run,
Until I finally see what you can see. Oh-oh!

 

The only scars in heaven - they won't belong to me and you.
There'll be no such thing as broken, and all the old will be made new.
And the thought that makes me smile now, even as the tears fall down,
Is that the only scars in heaven are on the Hands that hold you now.
   Source: LyricFind
    Songwriters: John Mark Hall / Matthew Joseph West
    Scars in Heaven lyrics © Essential Music Publishing, ME Gusta Music, O/B/O DistroKid

It's a beautiful song. 

I need to try to get to sleep. Friends and family have been and are coming to visit over the next few days. It would help if I'm not exhausted. 

Good night. 

The Roller Coaster of the End of Life

My mom has been on hospice for about 8 months now. It's funny in a way. She was referred for hospice mostly for pain management, was admitted due to congestive heart failure, and then found out she has lung cancer - which is not even part of her official diagnosis (because she didn't want to have a biopsy, which is required for a formal diagnosis).

It took some convincing for her to talk to the hospice company. She told me that everyone she knew who was on hospice died not long after being admitted to the program. I explained that it was because they went on hospice too late - and that many lived years while on hospice. 

She agreed to discuss it with them and then agreed that it was a good idea. 

It's been a huge God-send... for many reasons. There are some practical reasons - free pull-ups, wipes, gloves and other items needed for the latest years. Some of her meds are free, too. 

No doctor appointments... at least for us. I don't know about all hospice companies, but ours has one doctor, so all of her care is managed by one doctor and very caring, knowledgeable nurses. After going to probably about ten different doctors for YEARS, this has been nice.

Relationships with the aforementioned nurses, plus aides, social workers and chaplains are a big bonus. All have been amazing. I can say they are truly becoming friends. I know I can rely on them to answer questions, provide support, and do many other aspects of care that go above and beyond what many in those fields are able to do.

So I have a great support team for this very rough time of life. What I didn't expect was just how much of a roller coaster it would be.

In the beginning, even though there was never a doubt that hospice was the right call, sometimes I wondered if she actually needed it. Other than no longer being able to drive due to the pain meds, she was still very independent. She was able to cook, go to church, play dominoes with her friends every week and host family functions (with a little help, of course).

When it came time for her first re-certification, I reminded her not to lie, but also not to gloss over how she was doing. She has always tended to downplay her symptoms and her pain. Because I live with her, when she went to a doctor's appointment and reported her pain as a 4 out of 10, I knew it was actually at least a 6 or 7. She wouldn't mention very relevant symptoms. I was a little nervous that she would do that but she re-certified without any issues.

However, it wasn't very long after that things started to change. She became less independent. It became very difficult for me because I wanted to keep her safe while she still wanted to go and do everything she used to. Things like cooking became "discussions" (fights) because after watching her come close to getting hurt or catching something on fire from the gas stove, I had to insist she stop cooking. 

Sometimes I wonder if that was the right thing. So many decisions were debated - both during the heat of the situation (no pun intended) or afterward. My reasons were valid for her not to do those things but I wish sometimes that I was better at trying to convince her that relying on someone else didn't mean she still wasn't strong or capable - it was simply the best thing for the time.

Her decline has been very up and down - with more swings than I had anticipated. Several times, she has been completely unresponsive. I would call and get a nurse to come over and check her out, ask the social worker and chaplain if they could come, and share what was going on with friends and family. We would start thinking about where we would put items like a hospital bed and we even ordered one once. 

Each time, she just popped out of it. The first time was especially remarkable. She went from completely unresponsive to a few hours later walking out of her bedroom after her nurse came to check on her. (That was the time I got to cancel the hospital bed.) Those who had worked in hospice for years said they had never seen anything like it. I attribute it to her strength, stubbornness/independent nature, and the prayers of many of her (and my) friends.

After each episode, everything went back to "normal" (whatever that is). There might be a few more things she had a difficult time doing by herself, but overall, she was back to being able to go and do all she had done before.

This latest time was different. Though I knew it was different, having watched her intently for hours during each time before, there was still the hope that she would bounce back. Her care team agreed with me. There were aspects of being closer to the end of her life than had happened before - more episodes of low oxygen, alarming blood pressure readings, and though she was still breathing at a normal rate, it was just... not... the same. 

I had a feeling this was the beginning of the end.

That happened this past Tuesday (it's now 1:35 AM on Thursday). We all tried to explain it away. It was easy to attribute it to doing too much the prior few days. On Saturday, she went with my brother and future sister-in-law to pick up her old sewing machine from a repairman whose shop took over an hour and a half to get there and back. 

On Sunday, she visited a new church. This was the first time she was reliant on oxygen beyond sleeping or sitting still; the first time she had to use it outside of the house. On Monday, she played dominoes with friends she has known for decades at the home of one of the group's members, who lived over an hour away round trip. 

It was a lot to do for someone in her condition and could have easily explained where she was physically.

But like I mentioned before, in my heart I knew it was different. The subsequent days have proved it.

We ordered a hospital bed, a Hoya lift, a bedside table from hospice.. The hospice nurse changed the frequency of her visits from twice a week to every day. Some meds were changed, more were taken away, and others were added. 

And for the first time, I was brave enough to ask what to expect. I knew it was time to know.

My nurse brought a wonderful little book that explained what typically happens with people who are naturally progressing through disease- or age-related decline called "Gone From My Sight: The Dying Experience," by Barbara Karnes. It's an easy read, only 14 pages, and is based on research as well as experience. 

In it, I found that there are parts of the end of someone's life that they wouldn't know about unless they've experienced it themselves with a loved one or learned about it from someone who has. One is seeing people who have gone before. 

Yesterday, my mom saw my dad, who passed away several years ago. Then last night in the wee hours of the morning, she saw a woman standing behind me. She told me that I "couldn't go where she was going." Then she saw a man in another part of the room and said the same thing about him.

If that had happened without having heard about it before, I would have freaked out. But I am taking it as just one sign that she's getting closer to heaven than she is here.

She also had a very vivid dream yesterday. I won't go into the whole thing, but it turned out that she went into a very long tunnel towards a light. On the other side of the light were the pearly gates. She remarked that they weren't like she had always imagined - that they weren't made of pearls like she thought. 

We chuckled about that. 

Knowing what is typical helps on many levels, but even knowing this is what most people in her stage of life experience still doesn't help emotionally. 

Like many mother/daughter relationships, we've gone through different times where we were best friends, where we were more distant, where we've fought like siblings, and where we've shared everything. 

Currently, she is one of my best friends. I can tell her almost everything going on in my life. I ask her advice and truly know how amazing she is and the wisdom she can offer (totally unlike my teenage and young adult years when I "knew everything"). I rely on her, and she relies on me. 

There has been a role reversal. I am her caregiver now. I help her get dressed, remind her to take her meds and brush her teeth, and schedule those who help take care of her. The transition was difficult for both of us for a long time, but eventually we accepted that this is just what happens with most people in this age bracket.

But one difference is that I live with her. She and my dad took me in when I had a major life event that wrecked my world. This allowed me the ability to pursue my lifelong dream of becoming a professional photographer and writer. Though it's not unusual for a mother and daughter like us to live together, usually it's the daughter's home they live in. That adds a layer that makes our practical relationship different than other mother/daughter relationships. It took a while for us both to adjust when my daughter and I moved in - but it's been well worth it for all of us.

I'm writing this while sitting in her bed with her. She felt good enough to sleep in her bed instead of the hospital bed that we finally got - and I wanted to sleep with her, stay with her, be right beside her in case she needed me.

And she has. She has woken up a lot through the night. She sees people I can't see. She has very vivid dreams that she needs to talk about. She needs encouragement to drink when I know her mouth is dry. Though she can still bear weight and even walk a few steps occasionally, it's definitely not safe for her to get out of bed by herself.

I'm incredibly thankful that I get to be here, with her, right now. The sleep I'm losing is more than worth it... The sodium deprivation from copious amounts of crying is more than worth it... The fact that I am committed to not going anywhere until she either gets much, much better or she goes to heaven is more than worth it...

...because that way I don't have to depend on simply hoping that the times I'm able to visit her she is lucid. 

I have recorded her telling stories about her past. I get to hear her quips, which is a huge part of her witty, hilarious personality. We got to play a game of Five Crowns with her last night - and somehow, even being extremely confused and literally cross-eyed with exhaustion, she still ended up not only winning, but having an unheard of zero score after the five hands we played.

Mostly, I have gotten to see her smile - and laugh. Even though at times we're both scared, even though we both have cried (sometimes even ugly cried), even though we have each expressed how much we'll miss the other, I'm just so thankful. 

She's an amazing, wonderful, strong woman. She's been through a lot in her life. She's had really, really low lows and many high highs. She's very, very confident that she's going to heaven and looks forward to seeing my Dad, many of her friends and family who have gone on before her, and Jesus. She is also looking forward to finally being healed and whole after decades of ongoing physical issues, some severe. Her right arm, the one that has bothered her since she first broke it when she was six-years-old (for over 80 years), the one that had two previous elbow replacements before the huge surgeries that began almost exactly a year ago where she got a shoulder/humerus/elbow replacement, the one she was never able to rehab well enough to work correctly - it will finally be healed!

I have a photo of the last time she ever got to ride a roller coaster, which she loved. I was with her. We never buy the photos that cost an arm and a leg (no pun intended... again!) at amusement parks, but this time was different. I was pretty sure it would be her last time to ride her favorite amusement park attraction - and it was.

I'm proud to be her daughter, and I'm so very thankful that, as hard as it has been and is currently, I'm getting to ride this roller coaster with her, too.

Mom, I love you so much. Even though I'm going to miss you TERRIBLY, I know you'll be okay. In fact, you'll be better than okay.

And I will be too, mostly thanks to you.

Aspects of Caregiving that Aren't Talked About

Caregiving is HARD! I knew it would be emotional to have someone you love need help for so many formerly independent tasks. I knew it would also be taxing because of losing sleep. I knew it would be financially draining due to losing work and missing potential work opportunities because of something coming up with my mom's health or having a sitter not be able to come at the last minute.

But I didn't know there were so many other aspects that you would never think about until you are there.

Things like... 

- eating fast-food or take out more because of not having the energy to grocery shop or fix food;

- bills piling up and checks bouncing from not being able to stay on top of mail and paperwork;

- not being able to work out consistently because of needing to find someone who can stay with her when I want to go to the gym; 

- having to throw away food that spoiled because of not being able to keep my act together enough to use it in time;

- the guilt of doing things (like going out to eat) without her; 

- knowing that there are lots of other caregivers out there and even caregiving support groups, but not having the time or energy to access that support; 

- the brain fog that develops because of so many decisions to make, with some being tiny things to others being potentially life-or-death;

- how hard it is to keep a relationship going with your spouse because of the added stress and time apart, both physically and emotionally (mostly due to exhaustion);

- little things like missing return windows on items that we bought and didn't work out and missed sales...

But by far the biggest aspect of caregiving that I was totally unprepared for is always, always, always second-guessing every decision - from how much to hover to keep her safe vs giving her as much independence and autonomy as possible to not knowing what to do if she's not feeling well but it's not quite bad enough to call the hospice nurse.

It's been a little over seven months now since my mom went on hospice. Something else I really wasn't prepared for is how one would think that I would have adapted to this life by now. But obviously I haven't. 

I'll still see a concert I'd like to try to shoot and/or cover (through my freelance work as a photographer and writer), and only after I've started trying to get the job, I'll realize I have no one to stay with her. I'll see something I really want to buy on Facebook Marketplace and then realize I have no one to be with her while I'm gone - even if it's only 30 minutes. I'll meet someone new at church and start to plan to go out to eat with them after the service is over - only to realize the sitter I got to stay with her during church won't stay longer with her because they have their own plans.

One thing I want to make sure I emphasize - I wouldn't have it any other way. I feel privileged to take care of my mom. I'm thankful that I'm in a place where I get to.

But there are a lot of times I just really, really wish it wasn't so hard.

Long Time, No Writing (AKA Full Body to Thin Body - But Not in the Way You Think)

My title of this post isn't exactly completely accurate. I've been writing, but not here. It's been hard to write much at all with everything going on - and so this has fallen by the wayside. But I've decided that I'm going to try to write here more often.

As you know, coming here is my go-to when I'm sad (or really happy) or have something that happened I need to vent about or just have something I realized I thought you might be interested in hearing it. 

So, this morning, when a bout of sadness hit me, seemingly out of the blue, I thought I would come back to the best way for me to process it. 

Setting: I'm sitting along the back wall of my church. My husband is practicing with the worship team. I brought my laptop so that I could get some stuff done these couple of hours that I don't need to worry about Mom. 

I had asked to be on the team this week but there was a miscommunication between my worship pastor and me and I wasn't included. As it often does, it worked out better that I'm not on it this week. I really needed to be home with Mom this past Wed night during practice. (It's like God knows what's going to happen in the future - amazing!) 

It doesn't make it any easier to hear them playing and want to be up there with them. Well, I just figured out the why on my sadness! Though I know logically it was better for me to be with Mom and honestly, that I'm finally able to get a blog out for the first time in months, I'm still sad that I'm sitting on the sidelines of something I love to do so much. 

I would have to go back and see if I ever wrote about the miracle that me even being on the worship team is. A few decades ago I gave up on church - too organized, too many issues, too much hurt. Around the same time, I also shut my heart down concerning music - all types of music, not just worship. I thought that if I just shut it down and tried not to listen to any music, it wouldn't hurt so much. 

During that time, I also gained a lot of weight. A couple of times through during those years, I picked up my guitar and tried to play. It was physically just not possible. My full-body and shortish arms weren't long enough to reach the guitar strings with my full-bodied guitar. 

So, when I finally started back to a regular church (not Deaf Church) a little over two years ago, I wanted to join the worship team, but I didn't think playing guitar, my favorite instrument, was a possibility. Instead, I tried to play keyboard, which I had been somewhat successful in the past playing. Not this time! I failed miserably.

But my worship leader at the time kept encouraging me to pick my guitar back up and I had the bright idea to get a thin-body (not myself - my guitar). My mom supported me and gave me the money to buy a cheap one... and I was able to play it! Not only could I play it, it was like I had never put it down!

Then a few months ago, after losing weight and having more a thin body myself, I decided to be brave one day and try my beloved Takamine guitar, one that was special to me for many reasons. One was that during a horrible divorce, my worship team at the time took up the money to buy it for me. It's a sweet sounding guitar and through my no-music years and no money, I thought several times about selling it, but just couldn't do it.

It was incredibly special to me to be able to play it again.

Combine that with sitting on the sidelines... I've had other loves in my life where I had to sit out for various reasons. I know this is a common theme with humanity - there's not a person who hasn't had that happen figuratively if not literally.

Plus, add in being more than extremely tired. I haven't been sleeping much lately - averaging maybe 3-4 hours a night. It wears on you more than you realize until it happens. So my emotions would be on the edge even if I wasn't on the sidelines.

I feel that most of my posts have been more positive lately and I feel a little bad that I'm going back to my all-too-common post that verges on a pity-party. But I also have made a commitment to be real with this blog - and today I'm sad. Today, even though I know why, I feel left-out and on the sidelines. Today, I wish I was rested and up on the stage doing what I love.

But I'm not, and it's really okay. One thing I've been learning is that with life, and especially with bipolar disorder, emotions come and go. This sadness won't last forever. Not being able to sleep won't last forever.

And sitting on the sidelines won't last forever. In fact, most likely in just seven days (or three if you're counting until practice), I'll be back up there. 

For all this I am incredibly thankful.