Posted on November 8th, 2019
Back when my mother's dementia had robbed her of her ability to make new memories, it was understandably a confusing time for her. Out of necessity I devised all kinds of deceptions to make both our lives easier. One of the most important was a big sign I put on the inside front door which said "David will be back in 15 minutes so we can go out to eat... please wait here." I tried to take my mom with me everywhere I went because it was just easier. If I needed to run to the store or drop off something for a friend, she went too. But for the three years where she had no memory (but was perfectly able to stay home by herself), I couldn't take her to work or out to dinner with my friends. Rather than leaving her confused as to where I was, I put the sign up before I went anywhere. Then checked in on her every ten minute or so with the security cameras.
And it worked great.
Usually television kept her occupied. If she heard the television was on, she'd sit down to watch it for hours. But every once in a while she'd walk around looking for somebody, then try to leave the house when she realized she was alone.
Which would be disastrous.
And so I came up with the sign.
Rather than go outside, she'd see the sign and go get ready to go out to eat. She'd make sure her purse was by the door... comb her hair... change her clothes... whatever she felt she needed to do to be ready and look presentable. Sometimes she would do all that, forget she did all that, go back to the door, then start all over again in a loop. Then eventually she'd hear the television and get absorbed in it again... until the next time.
Yes, I was lying to her, but if the lie meant she wasn't constantly leaving the house in confusion... or experiencing massive anxiety because she didn't know where she was or where anybody was at... and meant I could leave the house to go to work... was it really such a horrible thing?
Before the sign, she was upset constantly and I worried constantly anytime I had to leave. Then one day I put the sign up so she could get ready for dinner while I ran to get gas, realized what a total game changer it would be if I just put it up every time I left, and never stopped using it.
When I was in support forums for dementia caregivers, some people thought it was genius and decided to try it. Some people were already doing something similar. And some people thought I was the most vile, evil person on earth for lying to my poor mother like that.
In every case of the latter I would reply with "And how many people do you have helping you with your mother's care? How many people can you call to help watch her when you have to go out? How many immediate family members will step up to give you a break when you need one? If the answer is greater than zero, then kindly keep your opinions to yourself because I have NOBODY." And I did not give a single fuck what they had to say afterwards. My mother, who was suffering through a horrific problem, was happier and less stressed. I, who was there suffering along with her, was less worried and less stressed. So why would I give a fuck about what you think? Especially if you've got a team of friends and family helping you out?
This is not to say that I can't say these things to myself, of course.
Nobody... and I mean nobody... beat me up over the things I had to do to survive my mother's dementia more than myself. Not even close.
I lost untold hours of sleep wrestling with decisions. Questioning the decisions I had to make. Second-guessing the decisions I had already made (and, all too often, crying myself to sleep because I wasn't sure I made the right decision). Because that's what it all comes down to doesn't it? Decisions?
Some decisions made themselves. If there were three options and you could only afford one of them, that's not a decision that's a reality. But other decisions, sometimes over the stupidest things, can destroy you.
Which care facility do I choose?... now that was a decision. You can see how that would tear me up inside, both before and after making it. To this day I question whether I made the right choice.
Do I sign the papers to enter mom into hospice?... was a decision that seemed so easy ("God, yes... she would have never, ever wanted to live this way!") but it was also an agonizing one to make. How do I sign what is essentially her death warrant?
Which of these pajamas do I pick?... sounds idiotic, I know, but just think about it for a minute. When you have no memory, all you have is the "right now." Spending the only thing you have with pajamas that itch... or pajamas with a design you hate... or pajamas where the color disturbs you... it's tantamount to torture, isn't it? So what do I buy? How will I know if they are uncomfortable or upsetting? Sometimes she wouldn't respond. Sometimes she'd tell her caregivers at the facility if something was wrong and they would pass it along, but most of the times all I could do was wonder if I made the right decision.
Is telling a lie wrong if it helps make life better?... if I'm honest, I still have no idea. And I questioned it every time I put that sign up.
But what was the alternative? I never tried a sign which said "David probably WON'T be back in 15 minutes, but believe it anyway because I have no idea what I'm doing or how to make things better... but I will be back eventually because I love you."
Eh... probably wouldn't have been the best decision I could have made.
Or would it?
I can't decide.
At least now I have that luxury.
Posted on October 15th, 2019
I'm an adult and I get to do adult stuff whenever I want... like having a hamburger for breakfast!
Back when I was very young, my family lived within a short distance to the local A&W hamburger drive-in. We didn't eat out a lot... eating out is expensive... but this just made the burgers all the more special. And boy were this burgers special. Sometimes, especially after we moved to a neighboring town and had to drive there, we'd eat in the car. I vividly remember sitting in the backseat with my brother... waiting for the car-hop to attach that big metal tray with the webbed orange liner to the driver-side window... then waiting for my parents to pass back that magical foil bag which had my burger in it... and a big frosty mug of A&W root beer, of course.
A&W had PapaBurger, MamaBurger, TeenBurger, and BabyBurger... and the foil bags used to have a cartoon printed on the front to tell you what was inside. You can still find them floating around eBay for sale...
Photo taken from WorthPoint whom I'm guessing took it from eBay?
I started with the BabyBurger, which had a smaller burger patty on it. Then one day I felt I was grown up enough to graduate to the TeenBurger, so I ordered that. It came with cheese and bacon on it and it was the best thing I had ever eaten. And even though I use a veggie burger patty with soy "bacon" now, I still love cheese and bacon on my burger and I owe it all to the A&W.
Sometimes we wouldn't eat in the car... especially when we lived close-by and could walk there. We'd sit inside the restaurant on a big orange booth seat at one of those wooden-looking laminate tables with the metal edges on it. On those occasions when I was still very young, I wouldn't be handed over a magical foil bag... mom would instead take the BabyBurger out of the bag, cut it in half for me, set it on the bag, then slide it across the table.
I don't know why.
If I could handle a whole burger when eating in the backseat of the car, then why couldn't I handle it when dining in the restaurant? Why cut it in half for me then? Just one of many, many things which will remain forever a mystery.
Isn't it terrible how many things you think of to ask somebody after they're gone and you're no longer able to ask?
This morning when I was an adult and having a hamburger for breakfast, I looked at it sitting there on the plate... took out a knife... and cut it in half, almost without thinking about it. Something I don't think I've ever done before in my entire life...
And suddenly I'm not an adult any more.
I'm just a little kid sitting in the A&W restaurant with my burger wanting his mom.
I don't know why some memories are so vivid in my mind where others have faded. I don't know how it is that I am able to remember something that happened when I was so young. I don't know what it is about eating at the A&W that makes it so unforgettable. I guess how our minds choose what to archive is just another mystery.
As is what happened to my old battered A&W mug that was bought for a quarter and sat in my cupboard for... like... forever. Did it break? Did I lose it? Did I throw it out? Did mom throw it out? I dunno. But I do know that A&W has an online merchandise shop where I can probably buy another one.
And, holy crap, did you know that it's their 100th anniversary this year?!?
Boy, I could sure go for a frosty mug of A&W root beer right about now.
UPDATE: While I was trying to fall asleep, I Googled for an image of the old A&W that I used to eat at when I was a kid. One photo came up, but it was from an expired Panoramio account and Panoramio has shut down... so I have no idea if this is actually the restaurant, who to credit the photo to, or whom to ask about it. This would be the view looking away from the restaurant towards the drive-in stalls and the parking lot. It certainly looks like it could be my old A&W...
The awning over the stalls... the menu-boards... it all looks much like I remember. What gives me pause is the price on the billboard of $849 (assumably $8.49) for an all you can eat shrimp dinner. That seems high for the era that my A&W existed. The cars also look too modern. I think the local drive-in A&W was torn down before this was taken? Maybe not. Another thing I question is the entrance here... from this direction, I think the entrance would have been on the right side of the photo. And I want to say that our stalls were straight instead of at an angle like this? In any event, this is definitely the kind of experience I so vividly remember, even if it's not the actual restaurant.
Posted on June 28th, 2019
I am writing this at near-midnight on Friday knowing that by the time I finish my post it will be tomorrow... and the one-year anniversary of my mom's death. Of course I still miss her. If anything I miss her more than I did a year ago. I think it's because the memories of her declining health are becoming dimmer while my happier memories are becoming brighter. Happier, but also more painful, because they are a constant reminder of what I've lost.
Mentally I still have a lot of work to do, as I can't stop bouncing between extremes.
One minute I'm jealous... even angry... that other people have moms living into their 80's and 90's who are still living active, happy lives. It's not fair. Then the next minute I'm gutted because I hear that somebody's mom died in their 40's and they didn't get the time I had. That's not fair either. Cursed because my mom started sliding into dementia at 70 years old. Blessed because somebody else's mom was just diagnosed with dementia at 52 years old. Unlucky that my mom died before we could get to all of our travel plans. So very lucky that we got to see as much of the world together as we did. Happy that we were so close. Devastated that we were so close... because would it hurt this bad if we weren't?
It goes on and on.
I think the thing that hurts the most is knowing that I would give absolutely anything for just five minutes to talk with her again. The mom she was before she got sick. Just to tell her I love her. To tell her how much she means to me. But also to ask her if the deicions I had to make were okay so she could assure me that they were and she knows I did the best I could. Because of course she would say that even if she hated what I did. She's my mother, after all.
I know it doesn't make sense that I would want to ask my mom a question when I already know how she would answer, but I can't help it. The unthinkable choices I had to make won't stop haunting me. It's pointless to second-guess something I cannot change. And probably wouldn't change. My whole heart was invested in every decision, so what would I have done differently? I honestly don't know. But probably nothing.
It's now 12:11am on Saturday, June 29th.
Since it's unlikely that I will get much sleep... or any sleep... tonight, I suppose I will look through all of the travel books I made for my mom. It will probably just make me miss her more than I already do, but what's another drop of heartache to an ocean of grief?
Nothing. And everything, I suppose.
Posted on May 12th, 2019
2019 has been surprisingly accommodating considering the milestones it's been racking up for me.
First year without my mom. First Valentine's Day with nobody to buy flowers for. First Birthday Weekend celebration without my friend of 33 years. And now, as advertising will not stop reminding me, first Mother's Day with no mother.
I will be the first to admit, that last one is proving to be tough.
For thirteen years my gift to my mom on Mother's Day was a new vacation. We traveled the globe, visited all kinds of amazing places, and had fun doing it. Recently I was going through all the travel books I made for her as a souvenir. Starting with our 2002 trip to Europe right up through our 2014 safari in Zimbabwe.
Initially I created books for her at Apple Books. They were nice enough, but I eventually switched to professional printing because I was unhappy with the photo reproduction. On our first trips, I didn't take many photos though. Just a few snapshots here and there. I took so few photos that I was able to combine the first four Apple Book trips into a single professional book (I used the colors of the cloth covers on the original books as borders)*...
The look of the book was nothing groundbreaking, but the graphic designer in me tried to create stylish introductions at least...
Photo presentation was pretty basic though...
As the years went on, I got a little more ambitious. I was designing nicer, more elaborate looking covers, for one thing...
And adding maps, travel routes, and such...
On later trips I was taking a lot of photos and putting considerably more thought into the the images I was capturing. With this in mind, I started buying "lay-flat" books and adjusting my layouts so photos could be as large as possible. I also tried to tell a story to make the content more interesting...
The final book is my favorite for so many reasons...
Every book was always ended with a photo of the both of us...
For 2015 we were going to take a cruise along the fjords of Norway. 2016 was going to be Machu Picchu and the Galapagos Islands. But those trips weren't to be. I thought she might be well enough in 2015 to take a Spring trip that was less ambitious. I booked flights to South Dakota so I could finally see Mount Rushmore and check the only state I haven't been to off my list (North Dakota). But a couple months before we were to leave I realized there was no way that she would be able to travel. Her confusion was far too great and it wouldn't have been a fun time for either of us. And so that was that.
Mother's Day isn't sad to me because I don't have anybody to buy a card and flowers for... after we started traveling, she never wanted me to spend money on that stuff anyway. It's now a reminder that I've lost a friend who explored the world with me. And while the books, photos, and memories are nice, ain't nothin' going to take the place of that.
*Apple Books was a part of the original iPhoto. You could select photos that you had stored there, then have the program automatically build a book for you. For the time, it was actually pretty cool. They had durable fabric covers with a nifty label stuck on the front...
There were issues though. In addition to the print quality, which was fine but not great, the books were kinda small and the layouts had a lot of wasted space and the pages were all one-sided...
By having my books professionally printed, I paid way, way, way more money... but I got to control the layouts, get superior print quality, and print both sides of the pages.
Posted on December 19th, 2018
Happy Birthday, Mom.
Posted on December 11th, 2018
My mom was an avid Teddy bear collector. She had tons of them. So many that she ended up donating a bunch of them to a firefighter drive. Apparently when firefighters respond to an emergency where a child has lost everything, they will give kids the bears in order for them to have something of their own from which they can start rebuilding their lives. It's a pretty incredible concept. But, then again, firefighters are pretty incredible people.
When my mom couldn't stay with me any more, I packed up some of her bears and took them to her new home. The rest of them I boxed up and stuffed in a closet because I couldn't bear to give them away.* Now that she's gone, there's not much point in hanging on to them.
Last month, I decided I would start donating her massive bear collection to the annual "Toys for Tots" drive. Almost all the bears are brand new, have never played with, and still have the tags attached. I'm sure mom would be happy to know that her bears are making kids happy for the holidays instead of sitting in a closet collecting dust, so it really is the perfect solution.
And so... every weekend I've been unboxing another crate to make sure they're in good shape, give them a vacuuming, then bag them up for the Marines...
There are a couple bears I've run across that I'll probably hang onto. Sunday I found the first bear of her collection which, coincidentally enough, I bought for her. Then there's her Teddy Ruxpin, which I also bought for her. I don't know that I want to keep it, but I'm interested in selling it if I can get a good price! Probably a long shot since there's no box for it, but you never know.
I was told that getting rid of mom's stuff is good therapy for accepting that she's really gone.
That's a therapy I don't need. I know she's really gone every single day.
*See what I did there?
Posted on September 30th, 2018
Time to remember the past and move forward... because an all new Bullet Sunday starts now...
• Marker. My mom's marker finally arrived. I placed her remains on Thursday and the stone was set shortly thereafter...
Burial vaults used to be big cement things. Now they're tiny plastic! She barely fit! The guys at the cemetery helping me were incredibly kind a respectful, which was very much appreciated.
It still seems strange for her to be honored as a Vietnam veteran when she wasn't in combat, but the VA assures me that her service during wartime absolutely qualifies her for the honorarium. I think this means the American Legion will put a flag on her grave come Memorial Day? That would be nice.
• Obituary. After my mom was buried, I could finally send in her obituary. I was surprised that I was able to do the entire thing online. I didn't have to talk to anybody...
I picked a photo from our last trip together. She's sitting across from me at the five-star Victoria Falls Hotel Restaurant in Zimbabwe. Sure she's in a T-shirt, but what the heck. She was an adventurer. That's the kinda stuff she wore when tearing up the planet doing awesome shit.
A sidenote... The photo I used for my mother's obituary was taken exactly four years from the day I sent it in to the newspaper, and I didn't even know it until I saw the date stamp of the photo. Weird how things line up from time to time if you pay attention. Here's my blog entry from September 27th, 2014. Amazing how the universe works.
And so I guess that's it. The last thing to do in a long list of things to do so we can both move on. Or not...
• Memoriam. When I purchase a copy of our local paper today so I can see my mother's obituary in print, I will also be purchasing yet another opinion piece by the paper's publisher who previously compared rape to cheating at golf and smoking. Did he apologize for his flippant and tone deaf attitude? No. No he did not. He doubles down and says that men have nothing to be ashamed of... we were born this way, after all. Most of us are good guys, so the horrible way that women get treated is not our fault.
Then whose fault is it?
You're saying the toxic masculinity which permeates our society and is a constant and consistent threat to women is nothing to be ashamed of? Men can hold their heads high while women are harassed, humiliated, beaten, raped, and even killed? Are you serious?
The idea that men should just keep going on about their business while a society which endangers women is thriving is categorically absurd. Jeff Ackerman says we should just keep drinking from the milk carton, mowing the lawn, and ignoring rape culture because most of us are nice guys. It's nothing to do with us. Men should stick together against these evil women who want to be able to walk down the street at night without fearing for their life. Apparently that's what he considers "behaving like a man."
I call bullshit. Real men should be standing together with women to put an end to this. Real men should be actively dismantling toxic masculinity at every opportunity. Real men should be teaching their sons that being a man means being a partner to women, not dominating over them. Real men set an example by respecting women, cherishing women, valuing women, and supporting women. Real men work for a society where women are heard.
My mother was victimized by a man who professed to be her boyfriend... but she was never a victim. She picked herself up, pulled together the pieces of her life, then moved on the best she could. She loved her family. She served her country. She was kind to those she met. She worked hard. She traveled the world to understand it better. And her reward for having such courage? To be memorialized in a newspaper where the publisher says that what she went through is none of my concern because that's just the way men are.
My mom deserves better than that. I'm a better man that that. And society will be far better off when "old men" like Jeff Ackerman are gone.
• Love. And in yet another "Making History" segment... MIKE PENCE BECOMES FIRST VICE PRESIDENT TO ADDRESS ANTI-GAY SUMMIT — But I'm sure he was hating the homosexualizers with Christian Love® in Jesus® name... so it's all good. I mean... these "Christians" have branded their hate as "Christian Love®" so I'm assuming they've trademarked that. Oh... and Jesus® of course. Can't go having The Wrong People co-opting The Savior® can we? They might tell people to love everybody as He did instead of weaponizing His name to push an agenda. We can't be having THAT! Can you imagine? People coming together to love one another? Why, the notion! So silly! Christian Love® is reserved for those who believe EXACTLY LIKE PENCE DOES... and nobody else! Lord, what a piece of shit. Pence, Trump, and their entire administration is garbage. Way to represent all Americans.
• Political Climate. When given the choice from here on out, I am voting exclusively for progressive women candidates. I honestly do not give a single fuck's worth of thought to any of these old white men destroying this country. I'm voting all women, all persons of color, all LGBTQ, all ANYTHING but the status quo from here on out. These assholes had their chance. The future belongs to anybody but them. Because the only way we are going to get FAIR REPRESENTATION in government is to have ACTUAL REPRESENTATION IN GOVERNMENT.
And until next Sunday, when I'm sure there will be a whole new set of horrors to deal with, I bid you adieu.
Posted on September 11th, 2018
As I said last year, pretty much all I have left to say on the subject of 9/11 can be found here. Now that my mom is gone, that's even more true since it's her story too. And so I'll just be linking to that entry from here on out when it comes time to remember the tragedy of the terrorist attacks.
When I was going through my mom's stuff last month I found this...
She saved her ticket stub from when I took her up the "Top of the World" at The World Trade Center on that day.
Mom saved a lot of stuff from our travels. Tons of stuff. I'm finding things like matchbooks and coasters from restaurants to brochures and pamphlets of activities we did to receipts and ticket stubs like this one. I had asked her why she'd want to save all this kind of stuff and she'd explain that it was just souvenirs. One day she thought she'd want to look back and remember all the things we did when she was too old to travel any more.
It's sad that she never got that chance. But kinda cool that she was so busy visiting new places that she never had time to look back on old travels while she was alive. Well, except for the photo books I made her. She'd look at those often. Many times while showing them to other people. Where the first words out of her mouth would be "Are your hands clean?"
Funny how I didn't start out as much of a picture-taker, but the books kept getting thicker and thicker as I was taking more and more photos. There's no book for 2006 because I helped her buy a car instead of taking her on vacation that year. I think I ended up taking her with me on a work trip to San Francisco or something, but it wasn't the same.
One of these days I really need to look at these again. And create a book for all the miscellaneous trips we took from 1994 to 2001 that I never got around to. Most of these I haven't opened in years. And one of them I can't find. Her book from Cambodia and Laos (Southeast Asia Vol. 2) has gone missing.
Even if I don't find it, I'm sure there's a matchbook from Cambodia around here somewhere.
Posted on August 30th, 2018
It's been two months since my mom died. It seems like it was years ago. It seems like it was yesterday. Sometimes it seems like it was just a bad dream.
Most days I come through it just fine. Her mind was gone long before she passed, she's no longer suffering, and I have so much to be grateful for in the time I got to spend with her. Whenever a wave of despair comes crashing down on me because I don't have a mom any more, I remember this and manage to keep from being overwhelmed. It doesn't mean I miss her any less, however. My heart still aches and that's something that's never going away. But my life seems less and less defined by her passing as time goes on, so I guess I'm going to survive this.
What's been going on with all that over these past months...
Funeral planning was pretty easy. My mom wanted to be cremated and buried in the plot next to her parents which they gifted her many years ago. I had bought her a funeral insurance policy, so most everything was set. Two weeks ago I drove over the mountains to pick up her ashes, which were kindly placed in an urn I bought to match the one I got for my grandma back in 2015. My mom said that a graveside service was all she wanted, but I decided against it. The last thing I needed was her piece-of-shit ex to show up. I figured mom would be okay if I didn't end up going to prison for murder over a service she didn't even care about, so that was that. The next time there's a family reunion, I'll show up with all my mom's travel books and that will be a better way to remember her anyway.
Because my mom was a veteran, I was able to get the VA to provide a memorial marker for free. When you order the marker, you get to select a "symbol of belief" to put on it. Since the Catholic Church didn't seem to give a fuck about providing her last rites, I was not going to put a Catholic cross on her marker. I thought I might compromise and choose a Catholic Celtic cross, since she absolutely loved the cemeteries in Ireland we visited, but I didn't feel comfortable with that either...
I briefly toyed with the idea of putting the Hammer of Thor on it, but I don't know that mom would find that particularly funny so I decided to leave it blank...
Then I noticed that the form said you could go online and find an updated list of emblems. So I visited the site and saw that they had added a heart to the options...
Interesting to note... my mom served in the Navy during the Vietnam War. When I filled out the paperwork, you can check a box for wartime service if the person qualifies. I checked the box and didn't think anything of it... until a week later when it popped into my head and triggered a panic attack. Should I have checked that box? So I called the VA and asked if it was disrespectful to veterans who fought in the war to be having her war service added to her marker since she was a state-side doing paperwork. Turns out that it's not. All parts of a war effort get recognized, and he encouraged me to leave it on her marker order. So I did.
And so now I wait for the marker to arrive so I can bury her ashes under it on the day they cement it in.
I decided to not post a notice in the newspaper until after mom's been buried. I have, however, written her obituary already. I wrote it the night she died.
My mom died with only one day left in the month of June. I did not realize how significant this timing was until I started dealing with the paperwork. Since there was just the one day, everybody is content to just write it off. No repaying of benefits. No weird requests for pro-rated reimbursement of coverage. No letters to cancel stuff. Pretty much no anything. I closed her bank account the next day and everything else just took its course. Insurance companies could just be ignored and, after a month of pestering, they went away on their own because there was no money in it for them. Ditto for her various memberships and such. Given time... they just... disappeared. This is a massive change from the nightmare I faced when my grandmother died. She passed with a little over a week left in the month and that drama went on for months. So... note to self: when it's time to go, be sure to die on the last day of the month. It's easier for everybody. I mean, it really shouldn't be... but it is.
I don't get much physical mail. All my bills are paid online and the vast majority of what shows up is junk mail. Once I had to start checking my mom's post office box to get her mail, I changed my address to the same box so I'd only have one spot to worry about. Now that she's passed, I've switched my address to my house and will close down the post office box when it runs out in December. In the meanwhile I have the key to the box around my neck so I don't forget to check it. This morning when I woke up the key was gone from my nightstand and could not be found, even when I moved everything to search for it. When I went to feed the cats, I saw that the key was laying on the stairs. Sure enough, checking the security cameras revealed that Jake had hauled it off at 2am. And he was so stealthy about it that I didn't even wake up.
My mom was not a foodie, nor was she overly-fond of cooking. She cooked when she had to, but most of the meals we preferred were ready-made canned or frozen that got microwaved. I took her out to eat as often as I could because it offered a bit more variety over the soups and peanut butter sandwiches she would usually end up eating. I would love to eat out every day myself, but A) I don't want to drive 20 minutes into The Big City just for myself, and restaurant options in my small town are minimal... and B) I can't really afford to eat out very often anyway. So I cook a lot. Which is difficult given that all my mom's kitchenwares are so old that they're falling apart or worn so badly that they're tough to cook with. And so... I've been slowly buying all new stuff. Muffin tins... cookie sheets... bread pans... that kind of thing. My latest acquisition? Mixing bowls! I splurged and bought stainless steel bowls with non-skid bottoms and lids. They are so much nicer than the beat-up old warped plastic bowls I've been living with. And while I would much rather spend my money on new power tools, my next purchase will be a nice set of new pots and pans. Really looking forward to that.
As I mentioned previously, I bought loads of photos of my mom and her travels to put up around the house so she would understand that she lived there even if she didn't recognize the place. It worked so well that I transferred them to her memory care facility when she moved out. Once she died, I ended up getting them all back. Some of them I've got hanging in my kitchen and hallway. All the rest I've decided to hang in Jake & Jenny's bedroom... which I may end up turning into a combo cat bedroom /slash/ second guest bedroom. They are some awesome travel photos, so they would make for a nice decoration for a houseguest to look at.
After I had to move my mom out of my house, I managed to slowly work my way through most of her belongings... tossing or gifting or donating them as appropriate. After a while it got to be too hard to keep going through her stuff, so I packed it all up into cardboard boxes and shoved it in the closet that's in Jake and Jenny's bedroom. My plan was to go through them this weekend. But now I've changed my mind. I'm just not ready. Maybe in another two months. Maybe never.
I had already given mom's best clothing (jackets, sweaters, and stuff) to family. Anything that was left got donated. When she died, the memory care facility said I could leave anything I didn't want and they would go through it all... giving anything worth saving to residents in need. Which leaves two items hanging in my closet. 1) Her high school sweater, and 2) A Mickey Mouse sweatshirt I bought decades ago that she loved so much that she wore it only for special occasions to keep it in good shape. I think I might build a shadow box for the sweater. Like what they do at Hard Rock Cafes for their memorabilia clothing. That would be kind of cool. I'm not sure about the Mickey sweatshirt. I might just leave it hanging in my closet. Maybe I'll build a box for it as well one day. It's strange to be so indecisive about "stuff." This goes against the Buddhist concept of detachment that I strive for, and I'm not sure how I should feel about it. Maybe I shouldn't feel about it at all? About the only thing I'm certain of is that I don't want to part with it. At least not yet.
I wish I had something insightful to say in order to wrap up this post, but I don't.
I just really miss my mom.
Posted on July 1st, 2018
Sad though my life may be right now, the bullets must go on. And so an all-new Bullet Sunday starts now...
• Thank you and remembrance. First of all, thanks to the many, many people who sent their condolences. It never ceases to amaze me what a great group of friends I have online. Second of all, for people asking where they can send a remembrance donation in my mother's name, please consider the Cure Alzheimer's Fund. It is estimated that somebody develops dementia every 65 seconds in the United States alone. We have to find a cure. This charity gets a perfect rating from Charity Navigator, and 100% of the money donated goes directly to dementia research. My mother's name is Pat Simmer and if you have a couple bucks to spare, you can donate in her name to the Cure Alzheimer's Fund here.
As I had explained yesterday, dementia is a horrific idea that forces you to reexamine everything. Relearn everything. And while I didn't find the books I read to be very helpful... and I feel as though I learned practically nothing... I thought I'd run out some bullets with my experience.
• Don't wait to have a power of attorney assigned. A lot of life decisions and financial decisions will need to be made that won't be able to be made by a person suffering with dementia. I wasted no time getting my brother and I assigned power of attorney so that we could make those decisions when the time came... because it always comes earlier than you'd think. The scary thing about POA is the potential for abuse, so it's essential to get somebody whose heart is in the right place and will always have their best interest in mind when making decisions. It's okay if that's not you. Recognize if that's not you.
• Be sure you are an owner on all financial accounts. Even the most beloved small-town bank seems out to screw you over, so make damn sure your finances are in order very early in the game. When my grandmother died, we found out that a Power of Attorney becomes invalid after death and, even though my mom was a signee on my grandmother’s account, she had no access to the account upon my grandmother’s passing. So... when I became Power of Attorney on my mom’s account and had that added to her checks, I had learned my lesson. I went into the bank and asked to use my Power of Attorney to add myself onto the account NOT as a mere signee, but as an owner. I was told "we’ve already done that." And when I logged into my mom’s account online, it appeared that was true, because my name was right there. Well, guess what? Turns out I was only a signee on the account after all, so now I have to go through all the bullshit I had to go through for my grandmother. This is outrageously stupid. If the situation is such that a person IS NO LONGER ABLE TO CONTROL THEIR OWN FINANCES AND THEY ARE SURRENDERING POWER OF ATTORNEY, IT SHOULD BE AUTOMATIC THAT THEY ARE ADDED TO THE ACCOUNT AS AN OWNER. And if banks don’t want to MAKE that automatic, then they at least owe it to their customers to point out that they need to do this so that the POA can control the finances to pay off final bills and expenses after death. I HATE banks. HATE HATE HATE them. Mostly because I have never understood their motivation in screwing over their customers. For the love of God, ditch your bank and find a Credit Union that is interested in serving you, not some board of directors. I'm not saying that they will be any better about making sure your loved one's accounts are accessible after death, that's up to you, but at least they won't be actively working against you for whatever reason banks choose to act against you.
• Hope for a miracle... be wary of miracle cures. From the minute the doctor dropped the dementia diagnosis, I was all about tracking down that miracle cure. I scoured the internet for anything the even remotely showed promise. I spent hundreds of dollars on everything from CBD oil to miracle juices to coconut oil to herb mixes... all in the hopes of halting or reversing her condition. Needless to say, it all ended up being a load of crap, and books like Awakening From Alzheimer's: How America's Most Innovative Doctors are Reversing Alzheimer's, Dementia and Memory Loss were essentially snake oil (which I would have probably tried if I read snake oil was the new miracle cure). Desperation to save somebody you love makes you want to believe anything, and there's no shame in trying alternative medicines if they make sense to you. But be careful you don't get sucked into losing more money than you can afford to lose. Because there's a lot of money to be lost out there.
• Question medications and mood changes. My mom has always been a kind and gentle soul. But near the end of her time living with me, she would lapse into fits of belligerence and anger. This can happen with dementia, and I had just written it off as her condition progressing. But it turned out that was not the case. At least not for her. She was prescribed loads of drugs to keep her calm and out of depression. When she ended up in the hospital, they cut all the mind drugs... all of them... and she was back to her normal kind and gentle self within a week. And she stayed that way until she passed. I'm not saying that you should ignore all doctor advice when it comes to medications... I'm just saying that if you see serious personality changes popping up, consult with your doctor to see if they have ideas about reducing or changing the drugs they're on. My life would have been so much easier if my mom was "clean" those last few weeks of living with me, but I didn't know to question what was happening.
• Don't intentionally create confusion, even if you're doing it for the "right reasons." Needless to say, coming to terms with dementia was not an easy thing. I didn't want it to be true. I needed for it not to be true. And every once in a while some little thing would happen that had me convinced she might be getting better, even though deep down I knew it couldn't be. So I'd come up with little tests to see if it were possible she had improved. Things like asking her if she wanted a Coke, then pulling up to a mini-mart and asking her to run in and buy a couple bottles. Then waiting. And waiting. And waiting. All in the hopes that she would come out with those damn bottles. But she wouldn't. Of course she wouldn't, because she couldn't remember why she had gone into the store the minute she walked inside of it. Which means I'd have to go in and get her. Turns out all I'd done is needlessly confuse her in an attempt to make myself feel better. Helping somebody with dementia means doing everything you can to keep confusion to a minimum. At this point, it's about all you can do and the biggest kindness you can offer them.
• Take breaks. Find a way to laugh every day, even when you don't feel like it. If there's one thing I'm certain of, it's that being a dementia caretaker is a lot harder than actually having dementia. You will be pushed to your limits... a lot. Caring for somebody with dementia is like a black hole from which you can't escape. But you simply have to. You risk losing yourself if you don't. I didn't have anybody I could have come give me a break, so I worked with the local council on aging to apply for a nursing service. I was able to get a few hours a month paid for, but if I ever needed a break or had to travel, I paid for it myself. And if I didn't have the money? I put it on my credit card. Something I hate doing, but couldn't not do. There were days I felt as though I would never laugh again and, as things progressed, I was honestly wondering if I could feel happy again. It became such a serious concern that I promised myself to find something I could laugh about every day. More than anything else I did, this helped me feel human again. The day that my mother no longer recognized me was the most painful day of my life. I went home and watched Eddie Murphy standup until I could laugh again because it's so vitally important to keep your ability to do so.
• Don't discount the rest of their life (or yours) after diagnosis. Once the doctor dropped the dementia bomb, it would have been incredibly easy to consider my mom's life to be over. But let me repeat what I said yesterday... her life was not done yet! Look at the last photo I posted on my travels with mom post...
At this point, my mom could not remember anything new. The brain mechanism for recording memories had been destroyed. All she had right here is most of her old memories... and that moment. She was happy and having a nice lunch even though she had no idea she was having high tea at the Jungle Junction Restaurant at the five-star Victoria Falls Hotel. She didn't even know she was in Africa. And the minute we left the restaurant, she would have absolutely no memory that this had ever happened. And yet... I would remember. I would remember her being happy even though she didn't realize she had no reason to be happy. Her life wasn't over. There were still good times to be had.
• Recognize when you can't be a caregiver anymore. I didn't. The fall off the dementia cliff happened over years, so I didn't recognize how bad it had gotten until one of my mom's doctors pointed it out to me. As it turns out, I probably should have found a facility for my mom months... maybe even a year... before I did. And yet, I have no regrets. My thinking was that the longer I could keep her with me, the better her quality of life. And maybe that was true. She was still recognizing me as her son, so having a friendly face has to be a benefit, right? In any event, when it's time... it's time. I am very, very lucky that my local hospital made the process be as painless as it could possibly be. First of all, they made it known that I needed to find a place as soon as possible... but they never threatened to force my mom out of the hospital. Second of all, they had an amazing, amazing staff helping me search the state for the best facility "fit" for my mom, taking in consideration her retirement savings, my budget, her Navy pension options, her Social Security monies, and what aid she was qualified for. And I took my time. I considered eleven facilities... and visited seven of them across the state... before making my decision. Because of that, I never felt bad about where she ended up because I knew I had put in the effort to find the best place possible.
• The best option may not be next door. When it came to finding a home for my grandmother, I picked a place that was literally two minutes from my home at the time. My thinking was that it would make it so easy to visit whenever I wanted. The problem with that is that I felt obligated to visit more often than I wanted. Not that I didn't love her... I loved my grandmother more than just about anything on earth... it's just that you can't let the sunset of their life become too much of your life. Had I been smart, I would have put her somewhere further away where visiting was more of an event than a constant chore. Your mileage may vary, of course. Perhaps you need to have your loved one close by, and that's fine. But for me? Having my mom being further away was much, much better for my health and mindset. No matter how bad things got, I looked forward to my visits because they were happening every two weeks instead of every two days.
• Make their home a home they're recognize when they can't recognize it as home. When my mom was living with me and really started to slide, the home she was looking for was the home she lived in when she was six years old with her mom and dad. Obviously there was no way I could make that happen. And so I tried other ways. Having her personal effects out in the open where she can see them helped. But the best thing I found? Photos. Not necessarily of family (though I did that too) but of herself. I had big photos printed on canvas of all our travels and hung them everywhere around my home. The brighter and more attention-getting the better, because she always seemed to recognize herself. So when she would see herself everywhere, she'd be able to figure out that this was where she was supposed to be. This ended up being so helpful that I actually hung photos of her over the windows. Because what's outside the windows could be confusing. Pictures of herself? Not confusing. When she moved into a memory care facility, I took the pictures off her my walls and covered her walls with them. For several months, she had something to talk about with her caregivers because she could still kinda remember them. Even once she didn't remember, they were still cool to have there for her visitors and the staff caring for her.
• Abolish glass everywhere you can. This may seem obvious, but it wasn't to me. When I moved into my new house, I bought all new dishes. For whatever reason, my mom kept breaking them all. Eventually I replaced all plates, bowls, glasses, and cups with shatter-proof melamine dinnerware from Pier 1. I got rid of picture frames and went with canvas prints because she was breaking those too. Anything breakable... especially if it could harm them after breaking... has to go. For things I couldn't put away... like the glass in my IKEA hutches... I covered with clear contact paper front and back so if it were to break it would be held in place instead of flying everywhere. You can do that with actual windows too, though most windows are tougher than you'd think.
• Keep an eye on their feet. Loose carpeting and area rugs are accidents waiting to happen because people with dementia have a confusion which is always distracting them. The first thing I did when I moved into my new home was have all the carpeting ripped out. It made things so much easier. But it's not a bulletproof solution because they can still trip easily. Do whatever you can to minimize this wherever you can. I kept my home as sparse as possible with little to no clutter.
• Surveillance cameras are as handy as you'd think they would be. In the earlier years where my mom was a bit confused yet still had some memory and was able to function on her own, I was still able to go to work because I set up security cameras everywhere so I could check in. These cloud cameras are getting cheaper every day and can be bought for as little as $30. I went with Nest Cams, which are considerably more expensive than that (and the cloud storage is even more expensive)... but they were easy to set up, allowed me to create motion zones so I could be alerted when my mom when places she shouldn't, and were an overall godsend for my peace of mind.
• Make as many moments as you can. Four years seems like a long time. But I assure you that the four years from June 2014 to June 2018 went very quickly as my mom's dementia progressed. Milestones happen and you don't even know it until they've passed. The last time we saw a movie in a theater. The last time we ate out in a restaurant. The last time we'd go for a walk. The last time she'd ride with me in my car. The last time she recognized me. The last time her eyes were open. In every case, I never knew it was the last time. So if there is something that you enjoy doing together... do it often, because there will come a day that they can't do it any more. I regret that my mom's last drive was to the dentist. She loved going for drives, and it would have been awesome if we could have went somewhere nice for her last time. But I waited too long after I saw she was starting to have serious difficulty getting in and out of the car, so it never happened. Not that she would remember any of it... but she might have had a nice moment at the time... and I would remember.
• If you're Catholic, plan ahead. My mom hadn't had anything to do with the church for decades, but she was raised Catholic and if you were to ask her what religious affiliation she was, that's what she would tell you. I don't know whether or not receiving "last rights" (or "anointing the sick" as it seems to be called now) would be important to my mom, but I wanted to cover that base just in case. This was a problem though, because my mom's old church was 2-1/2 hours away. The religious director for the hospice company we were using attempted multiple times over three days to get a priest from different local Catholic churches to come. No priest ever did. I was told somebody from the church would call. Nobody ever did. Needless to say, I was absolutely livid. Not because I give a shit... I'd just as soon not have a priest anywhere near my mother. I was livid because it might have mattered to her. And so... unless your loved one is in the vicinity of a Catholic church that knows them so there's a priest who gives a shit, plan ahead. Find a parish and build a relationship with a priest long before you'll need them to come for last rights. Otherwise? Apparently saving immortal souls is only something priests care about if you were a member of their church long enough to have made it worth their while on the donation plate. Because of this I went from loving the Catholic church, to being an apologist for the Catholic church, to being indifferent about the Catholic church... to now actively loathing the Catholic church.
• Just plan ahead, period. Because my mom and I had spent so much time together and were so close, I knew what her wishes were and what she would want for herself once she couldn't make decisions for herself. This is not a luxury everybody has, so you have to do the work. Go over every possible decision. Get an advanced directives document drawn up today. Start looking at facilities before you actually need one. You can't anticipate everything... Lord knows I didn't... but the more you can take care of ahead of time, the better off you'll both be.
• If a pet will help you, make sure you have a pet. If you need help, make sure you get help. Jake and Jenny kept my mom company and me sane while she was living with me. They gave me a reason to get up in the morning after she left. I seriously question if I could have survived all this if it weren't for my two cats. There were times I thought I should be in therapy to help deal with everything that was happening. I never pursued it. I should have. No matter how strong you are, dementia will test you like nothing else will. Be sure you're strong enough to face it because you're no good to anybody if you're not. Whether that means cats... or a dog... or therapy... or whatever... don't forget to be a caregiver to the most important person in all this. That would be you.
This is just the stuff off the top of my head, and my experience won't be the same as everybody else's experience. But maybe it will be of help to people, I dunno. It's a mere drop in the dementia bucket, but collect enough drops and you can fill that bucket.
Take care of each other, everybody.