Adapting and evolving

Looking back, it amazes me how long this has been going on.

I think my mother's first official diagnosis was in 2013, though there were signs at least as early as late 2010.

A lot of people don't spend this long with Alzheimer's disease because something else takes them first. There was a time when I hoped that would be the case, so that some of the parts that really hurt wouldn't happen.

We don't get to choose, and that's how it needs to be.

You can choose how you react, adapting to meet the needs as they come.

I have mentioned (probably more in the main blog) that there were times when we had real clarity.

It was clear when she needed someone to stay with her, and that it was going to be me. It was also clear when staying in the home was no longer working, so we needed to look at a memory care facility.

Those were both big decisions, so I was grateful for the clarity.

It was more common that there would be a shift in abilities, therefore in what worked to help Mom. Sometimes the change was very subtle, so maybe sometimes when it seemed sudden, it just hadn't been noticed previously.

There was a time when leaving notes to keep her on task worked, and a time when that stopped.

There was a time when she was safe to drive, because while she was not committing new things to memory, her existing memories were intact. When it wasn't safe anymore, I don't even think it was that she was losing her memories yet, but it was easier for her to lose her place and harder for her to recover from that. 

There was a time period when every afternoon I would wrap her in warm blankets and bring her a cup of cocoa and that made her very happy. I was sad when that phase ended, because it satisfied her so much with so little effort. Plus, I needed to find my way as a caregiver again. When one thing stops working, it is not always immediately clear what the next solution will be.

As I pulled out my song lyrics today, I noticed that the print date was from April. That's when I started singing to her, thinking it would work. It's been about ten months.

That's actually a pretty long phase, except there was starting to be less response. Today she responded more. I have no idea why.

I have not had any control over the course of this disease, but there have been meaningful moments and I have learned things. I believe I have become more patient and sensitive, though that may not always be obvious.

My acceptance of how much we do not control but how that is ultimately what is needed? That's from this. It could have come some other way, but this has been my path.

I am also more aware of the choices that we do have, and the way they matter.

I am not great with change, actually, and I really don't like moving.

There have been two blessings that I really appreciate for things that I have not had to deal with.

We moved to this house when I was six, and it is still home. On my mission, I only had two areas, with very few transfers: Fresno to Modesto and then back to Fresno.

Of course, there were three different apartment moves in Fresno. Regardless, I have had pretty good stability in terms of where my home base has been. 

Other things have changed a lot more, sometimes feeling very unstable. 

Without saying that I have never rebelled, I have been able to adapt. 

Reading all of the standard works in one year

I am trying to move away from writing about grief. 

The tricky part is that I am not sure that I am done with it. First of all, Mom is still alive, so I know there is another chapter. In addition, I realized I have another question or two that I need to answer for myself. I hope I get that done before.

Without being quite ready to start something new, this is an easy one to go over in case anyone is curious.

I decided I wanted to read in each of the books weekly, so the first thing I did was take the number of pages of each and divide by 52.

Well, that doesn't work great for the Pearl of Great Price, and the Old Testament is definitely the longest, so this is what I am doing:

Monday: 8 pages in the Old Testament
Tuesday: 8 pages in the New Testament
Wednesday: 8 pages in the Old Testament
Thursday: 10 pages in The Book of Mormon 
Friday: 8 pages in the Old Testament
Saturday: 6 pages in the Doctrine and Covenants

Sunday was going to be more for Sunday School reading, so that I was still keeping up, but it has ended up being for different things.

For example, there are 60 pages in the Pearl of Great Price. Instead of reading about one page per week, I started with the first five chapters of Moses, then read through to where Enoch would be in the Old Testament, read the rest of Moses, went through to Abraham, and read Abraham. 

Those nights were more than ten pages, but it felt like it could be reasonably done in one night. I think it worked.

That started mostly as a coincidence. The first Sunday night I was not starting anything yet, so I thought I would just get Moses 1-5 out of the way.

I am sure there will be times when my Sunday reading will relate to the Gospel Doctrine lesson, but they are still in Genesis so I feel like I am doing okay.

I have also given different weeks to catching up. For example, I read an extra ten pages in The Book of Mormon one week, because there are 530 pages and a reasonable schedule will leave me with extra pages at the end of the year. Also, I started the Doctrine and Covenants with Joseph Smith History (more Pearl of Great Price reading) and the testimonies of the three and eight witnesses, so I needed a few extra pages there.

I have also used the extra nights to re-read Revelation because I was trying to find something. A project like this stirs memory and raises questions; the chance to explore is good.

I am getting a lot of ideas for other areas of focus; we will see what happens in future years. For now, I like how this is working out.

In addition to getting ideas from spending time in all of the works, I am getting ideas from Ensign reading too, which is going much better.

Reading a few articles daily as opposed to a whole issue Saturday gets you through the magazines at the same rate, but it feels completely different and much better. 

That is one other thing that should be working better. While I have learned a lot from various readings of the Old Testament, there are places where I get bogged down. Now looking at the building of the tabernacle, only reading eight pages per day and doing something else the next day has made it much better. I expect this to continue through Leviticus and Numbers... the rest of the Pentateuch, actually.

It will also really help with Psalms.

So this is working out. I have had some pretty ambitious goals for things I wanted to study, and finding that I can achieve them makes many other things look possible. 

Processing a loss

The first thing I need to note is that I have not ruled out doing a multi-part series on a different Joy Harjo poem, "For Calling the Spirit Back from Wandering the Earth in its Human Feet." 

Harjo has multiple poems that I have found extremely helpful and moving. 

In "Washing My Mother's Body", she was not able to do so physically, so she goes back in mind and imagines the process. 

The poem had made me feel that there would be something lost if I was not able to do wash and dress my mother's body. I worked out that other things mattered more, but was there still something to learn about her mental process?

She starts that she is doing it because of 

          "what needs to be fixed
 so that my spirit can move on

                So that the children
                  and grandchildren
       are not caught in a know of regret they do not understand."

Perhaps the first important thing is that this does appear to be for the living.

Then the memories start to come. 

They come from physical objects, like using a pan that her mother used for washing babies, now to wash her mother with the care that you would give an infant.

There are memories of the dresses. Her mother bought a lot of them, but that was because as a child she only had one dress that she had to wash out each night.

Had she always realized that was the case, and was remembering it once more? Or had some truths just started to become clear?

There is another pot there, that had come from her mother's mother. Generations are connected in legacy.

That includes Harjo's memories of raising her children. 

There are memories of things that could be trivial, like her mother being shuffleboard queen at a local bar.

There are more serious memories, like a scar that happened when her mother was burned at work because her boss wouldn't listen.

There were memories of how hard she worked for her children.

      "The story is
      all there,
      in her body,
      as I wash her 
      to prepare her..."

She finishes the washing and brushes her mother's hair, kisses her forehead, and is wishing her off on her journey. Commending her to angels, she remembers a last bit of her favorite perfume. 

So many little things come back and seem so important. 

   "and then I let her go."

On the other blog I have been writing about these songs I have put together and how they relate to my mother's life and our relationship. 

I did have a very long journal session writing about her life, but then I would write about the songs -- first in the journal, then in the blog -- going over the details again and again.

In fact, I did make connections I had not realized before, including similarities we have that I might not have realized.

I don't want to be caught in regret. 

I have tried to live in a way that would not lead to lots of regrets, but under examination things can come together or fall apart. 

Things have been coming together. 

We can bury or burn our dead (there are additional options now). 

We can try burying our feelings or burning relationships. That can be harder to successfully pull off.

A final beautiful reminder from going over the poem again is that its okay if you didn't do it at the time. You can still go back to remember and release.

Or my way; trying to have it all done in advance.

There's still another step, I think, which will be drafting an obituary for her. 

Two visits ago, it felt like a real possibility that I might not see her again. Then I saw her yesterday and I am pretty sure there will be another visit. 

I have to assume when it is the last visit that I will not know, but that's true most of the time.

Tell people you love them. Live with openness and integrity. 

Don't stay caught in knots of regret.

Related posts:

https://preparedspork.blogspot.com/2026/01/the-high-cost-of-dying-part-3.html  

https://sporkful.blogspot.com/2026/02/january-daily-songs.html 

The times, they are a-changin'

This is still about death, though differently. 

(Also -- spoiler alert -- I am pretty sure there will be another post about grief.)

As part of the cost-of-dying posts, I had mentioned various traditions, with some thoughts about where they come from and whether they still serve.

Once upon a time it was very normal that people would place obituaries in the newspaper. 

They would also put wedding announcements with pictures, and sometimes even anniversary announcements. 

As a child I did not look at the obituaries much, but I remembered looking at the brides to see if there was anyone we knew, and if the dresses were nice... things like that. 

I did not realize that these were paid, like want ads and personals; it was just how things were done.

Of course, at the time we were also getting a daily newspaper in print. When that stopped, I missed the comics and crosswords more than I missed the wedding announcements. 

One thing with the obituaries is that if it was someone I knew, I wanted to know that it happened and how and details about their life. When I did look, it was mostly strangers.

It wasn't particularly efficient for keeping tabs on people that you knew but with whom you did not regularly cross paths. 

Social media is more efficient.

It still has drawbacks. Some people don't get on much or post much. There are things about how the algorithm pushes the feeds where a lot of people find it alienating. Still, I know more about people with it than without it, and I do like and care about people.

When my mother dies, I am going to post an obituary on her Facebook page. 

She has one. It was something that I thought could be kind of therapeutic in the early days of the onset of her dementia. It didn't work out. However, we have enough friends in common -- and maybe I should tag my siblings and self -- that it will get the word out to some. 

I've mentioned already that there is a plan for contacting various friends and relatives directly, but for the general news, I think that's a reasonable way of doing it.

Most funeral homes have online obituaries now, though there is a cost for that too. (There is also a cost for CaringBridge for updates on illnesses. I guess it makes sense but I don't like that.) 

I believe the newspapers still post obituaries, though I suspect the reach is much lower.

For our circumstances, I think Facebook is the best source for a general notification. The personal notifications will include phone calls, e-mail messages, Facebook direct messages, texts, and maybe even the regular post. Those are all based on how often we communicate with the people involved and how we normally communicate, but also how much of a blow it will be so how much cushioning it will need.

That list includes neighbors where I could easily run across the street, but I am assuming I will be falling apart and won't want to carry that outdoors.

That is connecting to others on a very specific subject, but a lot of different types of relationships and methods of communication come into play.

My main point is that things don't happen the way they used to, so I can't simply follow old patterns.

Some of these ways may even be better, but it takes thinking about it to find how to go forward. 

The high cost of dying, part 3

Money is a factor in this one, but it is really more about an emotional cost. 

What I worried about most was dressing.

You can have them pick up a body at the place of death and then cremate as is.

You can also have the funeral home clean and dress the body, or even do makeup, though that is normally only if there is an open casket funeral.

The itemized charge for that is $425.

When I was growing up, it was not uncommon that women from church would dress the dead. One of my mother's friends did and Mom really admired that. 

That friend has been dead for many years.

Talking to people now, everyone seems to just have the funeral home do any dressing. The people I have talked to are also not people who would be daunted by an extra $425. 

Paying for that service was not practical for us. One way people avoid it is by doing it themselves before the body has been picked up. I did look into that, but the information I could find recommends having multiple people and I just could not feel like it would work.

Okay, so we just dump her into the fire? That didn't feel right. 

Most of my frantic state was about that. 

I was trying to figure it out with a combination of researching what one hospice site says as well as re-reading a poem by Joy Harjo, "Washing My Mother's Body: A Ceremony for Grief." 

I was leaning toward it not really being a possibility, and feeling bad about that, but there were ultimately two things that really helped that came from conversations with friends.

The first was one woman telling me that whatever I did would be enough. I could not feel that was true right away.

The other was another friend reminding me that those practices are for the living.

Going over those traditions and where they come from, I believe many of them are more about accepting the reality of the death, physically viewing the body, wearing reminders of it, and meeting in community to commemorate it.

I really enjoy the Lore Olympus comic series. There is a scene where Persephone is trying to give some money to souls stranded on the shore who don't have the coins to pay Charon to ferry them over. There are so many that it starts a riot. 

We could have a very interesting discussion about funerary beliefs and customs for different cultures, but ultimately I don't believe that there is anything we can do to damage someone's transition into the afterlife. Whether they are incinerated and buried under the World Trade Center or lost at sea or hidden in a dump by a serial killer or controlling husband, that does not impede their journey after.

Sure, there might be more confusion or resentment because of the manner of death, but those issues do not depend on burial rites. Our power to damage others is limited to life, and there are opportunities for healing after that.

What matters is my care for my mother now, and before, and leading on right through the moment of her death. She would not want me to be frantic about this.

That will be enough, I can know that, and that is a blessing.

That doesn't mean I have become completely calm. I still want to have an obituary done soon, because I would have a harder time writing it after. I have asked questions about what to do with her things and am figuring that out. 

I'm still me.

But it is better. 

The high cost of dying, part 2

I am giddy to be able to tell you that we will not have to pay extra for body transport if our mother dies on a weekend.

https://preparedspork.blogspot.com/2026/01/the-high-cost-of-dying-part-1.html 

The weekend surcharge is only for memorial services or things like that. 

That was a huge relief.

This is not the issue that I was agonizing over, but it was worrying me. There are some things that I have learned after talking to the funeral home and other thoughts where I realized I needed to write more on the money part. What was bothering me was probably more emotional, but money is real. 

With this post and one more, I think I can cover all of that.

I should note that I have been a little scary for people asking me about it. I know I have sounded a bit frantic. I could feel it happening at the time, but I couldn't change it either.

I am starting to get better.

For the eminently practical, you really should call the funeral home rather than going through the price list. The itemized price list is something required by state law, but generally things are going in bundles.

The bundle we are looking at is Direct Flame Creation, for $1250. There are additional charges if you want a casket, whether you provide your own casket or get one from the home, and if the deceased weighs more than 300 pounds (our mother does not). If you want funeral services of some kind, then that's a different bundle.

Even though this particular bundle mentions some paperwork, it does not include getting a death certificate. Asking about that, it looks like our full amount will be $1305. I also believe that we will be okay with one death certificate, which is not always the case, but they were pretty helpful on that question.

I would still not be completely surprised if there is something else, but after the conversation it feels pretty complete.

Does that level of detail seem kind of crass? In poor taste? (Imagine adding some "yo' mamma" jokes regarding the weight limit!)

A lot of our social conditioning has taught us not to talk about money. Whether that's because you find it embarrassing to admit that some things are a problem or because it feels like bragging, where it really works best is for people who have ridiculous amounts of money and are still cheap. 

That doesn't really benefit most of us.

I do still recommend looking over the itemized list because it reminds you of things that you might not think about, like that paperwork does not give you a copy of the death certificate. You will need an actual certificate -- not a photocopy -- for things like insurance policies or closing bank accounts or pensions, where you would be receiving money instead of paying it.

One thing that was helpful for me was remembering that if we wanted to hold a service, that would not have to cost anything. In our church you don't have to pay for using the building or having a church leader conduct the service. If you want the body there, that would involve transport, so there could be additional charges, but not as much as for other churches.

We also have a tradition of luncheons afterward, with a pretty set menu and people signing up to help with that. I have bought hams for other people's funerals, but we were more impressed with the friend who arranged for catering from his favorite barbecue place. Obviously, they could afford that. 

Regardless, with our decision not to have a funeral, that was never a concern about expenses. 

Money is a concern, but it is tied with concerns about how it will feel and how we will cope and what pays adequate respect.

How do we get that right?

With the traditions, what do they serve?

If you have a lot of people coming into town and they are going to feel sad, having other people who care but are not as directly affected feed them has a certain practical nature to it.

On Queen Sugar, Charlie offered to hire people to cook and serve for their father's funeral repast, but Nova got really angry because preparing food for and serving their friends was part of the tradition and how you grieved and provided comfort.

That sounds like a good tradition, but was some of it also possibly resentment that Charlie had a lot of money and could make that offer too easily, without sacrifice?

Feelings are real. They can be hard.

And if a big part of your efforts are trying to hard to get everything right so it will go smoothly and everyone will be okay... well, you probably need to adjust your expectations.

Hypothetically. 

The high cost of dying, part 1

My topics have been more spiritual lately, but this did start as a preparedness blog. Sometimes preparedness is very physical and tangible.

I am still thinking about death.

This is also very financial; I can't help but see how much money affects the end of life.

First of all, let me just put a price list here:

https://fh-content.s3.amazonaws.com/release/Content/Media/ThreadgillsMemorialServices/TMS%20GPL%202025.pdf 

This is for Threadgill Memorial. I know multiple people who have worked with them and everyone says they are wonderful.

I linked directly to the PDF because it can take a bit of navigation to get to the cash amounts. This is where I'm getting hung up.

It sucks to have to be worrying about money when you are in the middle of grieving. 

Money is also a real thing, and it can be hard to avoid it.

Hearing other people's experiences, even when there were prepaid plans there were always additional charges.

I understand that better now after studying the list.

A big factor is transportation. It changes based on mileage, and based on timing.

My mother is in hospice, so I am pretty confident of the physical location where she will die and from which she will need to be transported. 

If a relatively healthy person had a plan but died in an accident away from home, that could add mileage that would need to be taken into account. 

Even an ailing person might transfer between home and a hospital and a convalescent facility. Depending on when the plan was made, the facility chosen was probably close to home, but may not be close to the place of death.

What might just be a $4.00 per mile charge for a longer route than expected becomes thousands of dollars when there are transfers between funeral homes. 

Also note there is a $480 service charge if this is happening on a weekend or federal holiday. I have been assuming that is for transportation, but it's under miscellaneous so could be for services. I should call and ask, but I can tell you that since I saw that I have been worrying that Mom might die on a weekend.

There are things you can plan for, like pacemaker removal or organ donation costs; you might have a hard time predicting the contagious disease fee.

As it is, based on the costs for my father (who was found on a Friday night), these prices do not seem outrageous. 

Everything that gets done gets done by people. They deserve to be paid for what they do, which is important work that not everyone is equipped to do. Because of its time-sensitive nature, they cannot always have regular hours. I get all of that and I don't object.

But if you don't have it...

There is another issue that is even more emotional, though still very much a financial one. I am trying to figure that one out even as a timer with an unknown amount keeps ticking. 

I hope to be able to write about that with more assurance next week.

For now, I encourage you to take a look and think about what you might want, for yourself and for those you care about. Get an idea of rough costs.

If you do decide to pay for a plan in advance, there should be a cushion for the unexpected costs. 

Those are sure to happen, even if right now it is impossible to have any idea of how.