As time goes on… so many of my sad memories are fading and only the good ones with my mom are sticking in my head. As I knew they would. But then I run across a TikTok of a Scottish guy taking care of his mother with dementia and it alllllllll comes flooding back to me. I realize that the sad memories can never truly go away… but you’d think they would hurt less by now.
The one that really hit me was this one, because Paint Your Wagon was one of my mom's favorite soundtracks as well...
@graemefs She loves this song , excuse the crumbs again ☺️ ##alzheimers ##dementia ##awareness ##scottishtiktok ##fyp ##mum ##singing ##leemarvin ##goviral ##musical
♬ Wanderin’ Star - Shane MacGowan & The Popes
I sure wish I had seen more of things like this at the time I was living it. Nothing could have really made my life much easier, but I think there would have been some consolation to be had from seeing that you're not alone, and others are struggling with the same situation as you. At the time I was so overwhelmed and completely detached from reality that I never thought to look. I've been RIGHT HERE on a number of occasions...
@graemefs She’s a wee soul , she’s ok now I’m a stranger to her now which is understandable why she’s a little afraid ##alzheimers ##dementia ##scottishtiktok ##fyp
♬ To Build A Home - The Cinematic Orchestra
In the end, I dealt with what was happening to the best of my abilities and did whatever I could think of to make mom's life easier as her mind started slipping away. I know she'd be grateful. I know she'd tell me how wonderful it was that I did what I did. I know this.
But I end up feeling like I failed her just the same.
I watched the last episode of 60 Minutes about the Facebook whistleblower because I was expecting some serious dirt. Some people were saying that the Facebook outage was intentional so that people on Facebook wouldn't be discussing the 60 minutes interview, so it must be juicy, right?
Turns out that it was not.
It was the opposite of juicy. Which, according to the listed antonyms of the word, means it was dull, bland, juiceless, moral, withered, sere, desiccated, boring, dehydrated, unfavorable, shriveled, unexciting, disadvantageous, clean, unsexy, uninteresting, and dry.
The story was all those things because all the allegations were just so fucking obvious. Facebook puts profits above its users? ZOMFG! I may die of un-shock.
Facebook is a piece of shit company. They put users like me in Facebook jail for the stupidest crap so they can say "SEE! WE ARE DOING SOMETHING!"... yet some people can say whatever the fuck they want, and spouting COVID misinformation (which is LITERALLY KILLING PEOPLE) is perfectly okay. I can't joke "all men are pigs" when I am, in fact, a man and am clearly joking... THAT will get deleted... yet a man can threaten to beat up a woman and there are ZERO consequences on Facebook, even if you report it.
So, yeah. What a waste of my fucking time. If I didn't have so many people important to me which I only have contact with on Facebook, I'd have ditched them long ago.
What was not a waste of my time was the the story after the whistleblower non-story about Tony Bennet preparing for his final concerts amidst him having alzheimers. It was absolutely fascinating. And heartbreaking. Especially if you've had to go through it with somebody you care about.
Cannot possibly recommend watching this highly enough. Worth your valuable time...
The reaction by Lady Gaga at the end when Tony knows her name... it's like... all the feels. I've been there. And you feel exactly like that. And when it happens less and less, you are hit by it harder and harder. I still remember the last time my mom remember who I am, even as I am forgetting all the less happy times around it.
But that's how it works, right? That's how we cope? Cling to the good things and let go of the bad?
It's how I cope, anyway.
=sigh= I've drastically cut down on the number of political posts I drop on my blog because there's nothing new to say. On top of that, it always makes people mad because I am critical of politicians no matter which side of the political divide they get their lobbyist money from.
But recently something has been dominating the news cycle which has really bothered me, so I'm just going to dump my thoughts here for all the world to see and let the chips fall where they may. And that "something" is Impeached President Trump bragging about being able to pass a cognitive test like it's certified him as some kind of very stable genius.
As the caregiver for my mother through her dementia, it's a test I'm painfully familiar with.
Far from an IQ test, the test our impeached president is referring to is designed to be a screening tool for diagnosing cognitive decline and brain-related problems. It looks like this...
This is the Montreal Cognitive Ability Test. I'm not positive this is the version of the test my mom took but, if it wasn't, it was very close to this. She took it twice. And watching her struggling to get through it is something that still haunts my nightmares. The first time she attempted it she pretty much failed at everything, and it was all I could do to not break down into tears right there in the doctor's office. I was so close to her problems that I wasn't seeing them for what they were. It was this test that put everything into perspective for me, and it was gut-wrenching. I am having anxiety just remembering back to it.
The second time we got through question three and there was really no point in going any further. That time I did break down in tears, but it was after I had excused myself and somehow made it to a stall in the men's bathroom.
Ironically I remember her taking the tests like it was yesterday because my cognitive abilities are (assumably) mostly okay.
The first question has you running through a maze of characters which are alternating numbers and letters of the alphabet. The challenge is to get them in alternating order, which anybody with a brain can manage easily. Except people with an injured brain, of course. Despite having it explained to her twice, my mom connected the numbers and ignored the letters. The next question asks you to draw a 3-D cube. Even if you don't have artistic talent this is something people can copy fairly easily. My mom managed to get a square okay, but then it was just random lines.
Next you have to draw a clock with the time set to 10 past eleven. This might be tricky for some but, again, a person with normal cognitive function can draw a circle, put a tick at 12 O'clock and 6 O'clock, draw in the 15 and 45 minute ticks, then put two ticks between the ticks you have. Then you draw the little hand and the big hand at the appropriate time. This had my mom completely flummoxed. She got a kinda-oval shape, but then just started drawing random lines really close together, and she had to be coached to get that far. I think the hands she drew weren't even on the clock face.
Then you have to name some drawings of animals. Mom blazed through these with no problem. At the time of her first test her long-term memory was in pretty good shape.
Next is a memory test where you are given five words and asked to repeat them back. This is where things can get tricky. If you just throw five random words at me, I won't remember them at all... likely not even five minutes later. But if you tell me I have to remember five random words, then I can do that no problem because I use memory association. FACE • Okay, I am picturing a woman's face. VELVET • Okay, the FACE is Isabella Rossellini and she is rubbing a piece of blue VELVET on it. CHURCH • Okay, we pull back from Isabella Rossellini's FACE being rubbed by blue VELVET and she's sitting on the steps of a CHURCH. DAISY • Okay, Isabella Rossellini's FACE is being rubbed with blue VELVET as she sits on the steps of a CHURCH which has a DAISY growing in front of it. RED • Isabella Rossellini's FACE rubbed by blue VELVET as she sits on CHURCH steps with a DAISY growing in front of it and a PeTA nut job just drove by and threw RED paint on everything. FACE, VELVET, CHURCH, DAISY, RED. Got it. My mom, of course, couldn't get through the list at all. She couldn't remember a thing, and this was all really confusing to her.
Then you repeat some numbers and have them repeated back... and have to clap when you hear the letter "A" when a series of letters are read to you. Then you have to count backwards from 100 by sevens (which, is something I can do easy enough, but it takes a minute!). My mom just kinda stared blankly and couldn't be coaxed into even attempting any of this.
And now we're finally to those last five VERY HARD QUESTIONS which has Impeached President Trump thinking he's some kind of medical miracle.
When Impeached President Trump brags about five fairly simple questions being "very hard," I am understandably concerned. Everybody should be. But more than being concerned, I am very, very pissed off. Whether your brain is cognitively functional or not has absolutely nothing to do with whether you're an evil asshole or not! Do I think Joe Biden could run through this test and get 30 out of 30 correct? No. No I do not. Do I think that Impeached President Trump actually got 30 out of 30 correct? No. No I absolutely do not. We will never see that test. And even if we saw that test, there's no guarantee whatsoever that it's the actual test or that he wasn't coached all the way through it. That's politics. And as thrilling as it might be to see Joe Biden and Impeached President Trump go head-to-head in a cognitive test when I think that they both have demonstrated that they have cognitive issues... that isn't going to get us anywhere. It's not going to tell us which special interest groups are buying them off. It's not going to tell us what they'll be fleecing off the American people's hard-earned tax dollars. It's not going to tell us what back-door deals and shady cronyism their administration will be party to.
All it will tell us is whether they can remember what a lion, rhino, and camel are.
But my biggest takeaway from all this brouhaha is that there's a serious stigma against people with brain and memory problems. I read the comments on these news stories and it's mostly people making fun of Impeached President Trump or Joe Biden because they (allegedly) have cognitive decline. Which is to say that they're making fun of my mom. And as I sit here and type these words my heart is aching.
I am not going to lie, though. I absolutely do this too.
I try not to. I know better. And it's never necessarily to make fun of people, but more to offer armchair assessments as to somebody's mental state or cognitive abilities from a clinical perspective when it comes to the responsibilities they have. I've said that Joe Biden looks like he's sundowning, which may be true... but it could just be him attempting to speak when he suffers from a stutter. I've said that Impeached President Trump scares the shit out of me because everything he says is insane and he's got his finger on the button to unleash the nukes... but it could just be him being an evil, disgusting excuse for a human being. I honestly don't know.
As always, all I can do is try to be better about not stigmatizing mental health.
Even if I fail in the attempt.
Which I do a lot.
Take my trying to eat better, for example.
Yesterday I had to go to the grocery store because I needed an onion and a few other items. While I was there I passed by a display of sugary bakery products that were on sale. These are things that I just can't eat any more... most of the time I don't even want to eat them any more... but I saw a box of raspberry jelly donuts and was immediately intrigued. When I was in college, I was eating a box of these things a day. But as of now? I haven't had a raspberry jelly donut in decades.
I bought a box of course. If I'm careful and eat them in moderation they're not going to kill me, right?
Yeah... I ate half the box that afternoon and downed the other half this morning for breakfast.
But I'll try to do better tomorrow, I promise.
The holidays are nigh but there's still something to be happy about, because an all new Bullet Sunday starts... now...
• Movies? Does anybody at Apple actually use their shit? Because not a damn day goes by that I don't find bugs or serious problems. Just now it's trying to find a movie in the TV app. But everything is so fucked up that you really can't. Even worse? When you try to browse for it by selecting "movies," they show you a bunch of shit THAT ARE NOT EVEN FUCKING MOVIES...
Such a waste of time. iTunes may have sucked, but at least it wasn't a useless pile of shit.
• Remember. It's weird watching this and knowing EXACTLY what's happening. Not remembering, but not wanting to admit you don't remember. Not understanding, but being polite and pretending anyway. Not having any clarity of who, what, when, and where, but dismissing your confusion. Then an occasional moment where the dots connect and there's a spark of... something... in their eyes...
Hardest days of my life.
• a-ha! No, it's not as refined as the version that came after... but it's still a brilliant, beautiful, haunting song here...
It's so sad to me that a-ha is considered a one-hit wonder when they had so many remarkable songs following Take on Me. That first album is brilliant. But so are the ones which followed.
• Cuteness. I could spend hours watching raccoon videos on YouTube. I'm trying to cut down, but... man... BABY raccoons...
Nature is so amazing that it hurts.
• Retirement? Reality is a harsh mistress...
The future is scary, yo.
• Transcript? I'm just... it's just... I mean...
WHAT. THE. ACTUAL. FUCK?!? The transcript LITERALLY PROVES THAT PRESIDENT TRUMP IS GUILTY. If everybody willing to testify says he is guilty... and everybody who says he's innocent refuses to testify... doesn't that say ANYTHING about what's happening here? Does the truth even matter? Talk about reality being a harsh mistress. The future is terrifying, yo.
• Mystery. How Wrabel manages to keep churning out such beautiful work song after song after song is a mystery. This is a Christmas song for heaven's sake!
Happy Christmas, if that's your thing!
Have a great holiday...
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.
It's the little things that tear you apart, you know?
Last night I headed to bed around 10:00pm. That's earlier than usual, but I'm on the Left Coast trying to adjust to Eastern Daylight Time before I head to the Right Coast.
My plans were thwarted as I was falling asleep around 11:00pm because I noticed there was no glow coming from my comic book storage closet*. This is where Jake and Jenny like to hide out, so I wanted to make sure that I replaced the nightlight before I fell asleep and forgot. Otherwise it's pitch black in there, and even cats with their awesome eyesight need some light to function.
So I headed downstairs to the hutch drawer where I keep the batteries and small lightbulbs to see if I had something.
I did.
Right next to the pile of lightbulbs I bought for my mom's nightstand lamp.
As she started sliding deeper and deeper into dementia, trying to keep everything exactly the same from day to day became a full-time job. But it's something I had to do because even small changes could result in confusion that would spiral out of control. One minute her blanket isn't on her bed where she expected it to be... the next minute she's in a full-blown panic thinking that she "left it at the lake" (wherever or whatever that was).
One of the worst nights came when the bulb for her weird nightstand light burned out. It was weird because it was meant to look like an oil lamp with a chimney, but it had a second light in the base where the "oil" was supposed to go. Depending on how many times you rotated the switch, it would illuminate the upper light, the lower light, or both lights.
When things first started to go wrong she began insisting that the upper light always be on while she's sleeping. I think she felt safer that way. You can see her lamp in this great photo I took of Spanky laying on top of her while she slept...
The lamp was small, top-heavy, and prone to being knocked over. I spent a lot of time worrying that she would knock it off her nightstand and break it. The fallout from that disaster would have been catastrophic. I'm not sure where she got the thing, but probably from her mom, and so I'm sure she would notice if it went missing.
One night as I was getting mom ready for bed, I went to turn on the upper lamp and it wouldn't turn on. The weaker bottom light wasn't acceptable, so I had her get dressed so we could go to the grocery store for a replacement bulb. Unfortunately they didn't have the right bulb (it was small and round and weird... just like the lamp itself). Once we got back home I tried explaining that we would have to wait until morning to get a new bulb.
Complete and total meltdown.
She thought somebody broke into her room and stole her lightbulb. This made her inconsolable because she thought they were going to come back and kidnap her. Then she wanted to go to her parent's house (long since gone) because she was convinced that people were going to break into her room and kill her. She was screaming for the police. It... was... awful. Eventually I took her out to the living room and had her watch television until she fell asleep.
The next morning before work I packed her up and took her to Home Depot for a new bulb. They had one left. Not wanting to go through this ever again, I went home and ordered four more from Amazon.
Then something weird started happening. Bulbs that were lasting years were suddenly lasting just a couple months. Not knowing what was going on, I ordered three more bulbs from Amazon. Better safe than sorry.
Eventually I caught her taking the bulb out of the lamp, smacking it repeatedly on the nightstand, then putting it back in. At that point she started having trouble using a fork, so I have no idea how in the heck she managed to disassemble the lamp (which had multiple pieces to it)... let alone put it back together again. Like so many things at the time, it made no sense.
When I asked her what she was doing, she told me that she was "fixing it" because the bulb was too bright and hurting her eyes.
Well, crap.
The weaker bottom light still wasn't bright enough for her, so I ordered a bunch of different bulbs in the hopes that one of them would be a little less luminous...
Turns out it was these weird plastic bulbs from Korea that she wanted, so I ordered a pile of them.
• • •
Once I had moved my mom to a memory care facility over the mountains and was able to accept that she was never coming home, I started getting rid of everything in her bedroom. I hired a junk hauler to take away her dresser, her chest-of-drawers, her nightstand, her shelves, her bed, her mattress... everything. I didn't want the reminder. I didn't want to spend weeks trying to sell or donate it. I just wanted it gone.
As for that stupid lamp?
I threw it in the trash and smashed it to pieces with a hammer.
The lamp had become a symbol of all the horrors my mom had to endure way too soon in life, and I thought it would be therapeutic if I were to take out my anger and frustration over her fate by destroying it. This didn't end up making me me feel better about anything, of course. And it would be just my luck that it was some kind of heirloom worth thousands of dollars. But I didn't care then. I don't care now.
Apparently I never threw out all those bulbs I bought though.
And so here they are haunting me.
Like all the things in my life that remind me of her.
Which is pretty much everything, I think.
• • •
*My house is strange. It essentially has two primary bedrooms. The one on the main floor was for my mom and is now a guest room. It's big, has a massive picture window, a bigger closet, and a changing area. Upstairs there's a small bedroom (which my cats have claimed) with a regular closet... and a larger bedroom (mine) with a regular closet and a large storage closet behind the regular closet. That's where I keep my worthless comic book collection in case I ever want to read them again one day...
When my kittens were brave enough to come out from underneath the couch after a few weeks, I tried to keep them from going upstairs by blocking off the stairwell. I was not successful. Eventually they had explored every nook and cranny in my home, including the comic book closet (which I keep open all the time because I don't want the paper smell to accumulate).
This quickly became their favorite hiding spot, and remains so to this day. Whenever I have company over, this is where Jake and Jenny are at.
They hop on the vacuum canister, then leap up onto the stacks at the end, then hide behind all the stuff I've got stacked up on the very top (my stereo and old photography stuff). They love it there, even though it gets way too warm in the summer.
I should probably start calling it "the cat closet" instead of the comic book closet.
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.
And now...
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.
When you've unloaded your life on the internet for fifteen years, it probably seems hypocritical to claim to be a "private person," but for me it's still true. Rarely does my blog touch on my personal life, my work, my family, or my offline friends. That's entirely by design, because there are some things I'd rather keep to myself. Not just for me, but out of respect for the privacy of everybody else connected to my life.
Long-time readers were probably surprised to find out that so many of my travels which have been documented here on Blogography were made with my mother, because I never mentioned her being with me at the time. The reason for this is long, complicated, and nobody's business... but... at the same time it really should be everybody's business. Partly because it may help others who are going through a similar trajectory, but mostly because there's a lot of inspiration to be found there.
And so...
For all the time we've spent together over the years, my mom was never given to talking much about her life before I came along. I know practically nothing about her years growing up, and I honestly don't know why that is. What little insight I have is from old photos I've run across or out-of-the-blue comments that would pop up. Once while we were out for breakfast I ordered my eggs over-medium instead of scrambled like I usually do. Mom took that as an opportunity to mention that when she first got married and was cooking breakfast for my dad, she'd throw out eggs with broken yolks because she didn't want him to think she was a bad cook.
And so it went for as long as I knew her.
When things didn't work out between my mom and dad, she moved to a neighboring city. I ended up moving there with her because I was attending college there at the time. After a year of starting a new life for herself she spent most of her time with her boyfriend and was rarely around, making her the perfect roommate.
I spent way too long trying to figure out what to do for a career, but eventually found my way to graphic design. Once that had been decided, I took a job offer with a brand new company that was starting up in San Diego. It was sent my way via an ex-girlfriend who was living there, and seemed like an opportunity I couldn't pass up. The opening was seven months away because offices were still being built, so I asked my mom if she wanted to take a trip before I left. She had accompanied me on work-trips around the US from time to time, but this was to be a grand vacation in Europe... visiting London, Edinburgh, and Paris. We went. We had a great time. And I was happy to have some terrific memories before leaving home.
Not long after returning, it came to light that her boyfriend was a heinous, abusive, shit-stain on all humanity. And my mom's world fell apart. I'd say this "man" was garbage, but that would be an insult to the bag of cat shit I just tossed in my trash can. I maintain to this day that prison was too good a punishment for the atrocities he committed, and consider anal warts to be a higher form of life than him on his best day.
My mom never fully recovered.
She blamed herself for not seeing what he was... blamed herself for not knowing what he was hiding... blamed herself for everything and anything because that's all she had left. On the day she got a phone call from her now-ex piece of crap demanding she come bail him out of jail, I knew that San Diego would have to wait. First I had to try and get her the help she needed. This involved attempting to carry her down the stairs of her apartment, which I was not capable of doing. I essentially ended up dragging her down the stairs as she was sobbing uncontrollably. She couldn't walk. She could barely breathe. Days later I saw how badly she was bruised because I was not strong enough. It was the first time I felt as if I had completely and utterly failed her as a son. It would not be the last.
Months later as she was slowly... so painfully slowly... recovering from the trauma that life had thrown at her, she asked me if we might go on another vacation together one day.
You also now know why she was never mentioned as I documented our travels on my blog.
I didn't want her disgusting pig of an ex to know anything about her or what she was doing, even though deep down I loved the idea that he would know she recovered from his abuse and managed to live a great life without him in it. She had crawled out of the wreckage, picked up the pieces, and did the best she could to carry on. Sure all the fantastic places we traveled had helped, but make no mistake that it was her strength, determination, and drive that were ultimately responsible.
This was not the life she had hoped for, but it would be good enough.
At least for a while.
A decade after our European vacation, her memory started failing her. She would chalk it up to having "senior moments," but after a while it was becoming a problem. She would write herself notes constantly. More notes than anybody could ever read. She'd go through a pack of Post-It's in a week (eventually she'd go through a pack in a day). Then, three months before we were to leave for Africa, I woke up and found her wandering around in a daze. She was so confused that I thought she might have had a stroke, and rushed her to the hospital. But it wasn't a stroke.
The specialist was not entirely sure what had happened to have caused the "permanent brain injury" which my mom was now dealing with. He didn't think it was Alzheimer's, but couldn't know for sure. Subsequent sleep studies found that she would stop breathing for dangerously long periods in the middle of the night. Her doctor felt that oxygen deprivation was most likely responsible for her brain trauma. He immediately started her on a CPAP machine, but the damage had been done.
There was no reversing what had happened, and her slide into dementia had begun.
And now it was my turn to have my life fall apart.
First thing I had to do was get a note from her doctor so I could cancel our trip to Africa and get a refund from the insurance company. "Why would you want to do that?" he asked me. Well... probably because her brain was incapable to making new memories and it would be a horribly confusing ordeal for her. But her doctor thought canceling would be a mistake. Since her older memories would be preserved for a while, he thought she would be able to go and still have a good time. Sure she would remember absolutely none of it, but that wouldn't stop her from having fun at the moment.
And so we went.
It was bizarre, tragic, and beautiful all at the same time. Every morning we'd wake up and she wouldn't know where we were or how we got there, but then she'd see an elephant wander by our tent (or whatever), remember that we had been planning a trip to Africa, put two-and-two together... and, surprise, we must be in Africa.
And, no, the irony of an animal that supposedly never forgets helping me come to terms with a mother who always forgets is not lost on me.
It's funny how things sometimes work out.
I am beyond grateful that we had taken that first trip to Europe, because that showed her she could have fun in life without her boyfriend in it... right before her boyfriend was carted off to prison.
I am even more grateful for her doctor encouraging me to take her to Africa despite her brain damage... because it showed me that her life was not done yet. Yes, things would continue to fall apart, but I didn't just write her off after diagnosis like I probably would have if we hadn't gone to Africa.
Everything after returning home is a blur of heartbreak and tears as I struggled to figure out how to help my mom have the best life she could when life was throwing every possible obstacle in her path.
Eventually her apartment wasn't safe for her. Those same stairs I had dragged her down years before became a barrier to getting her in and out of the apartment. So I bought a home in the old neighborhood I grew up in where she could be in a familiar area (so that's why he bought a new home!). I had to install security cameras all over my home so I could keep an eye on her while I was at work (so that's why he has all those cameras!). My mom was scared and lonely when I wasn't there, so I decided to get some cats to keep her company (so that's why Jake and Jenny are there!). It goes on and on. Every day was a new challenge. But it's my mom and I love her, so what else was there to do?
I'm not going to sugar-coat it, dealing with dementia is a horrendous ordeal, and just when you think you have a handle on it, things get worse. They always get worse. And then there comes a point where you don't think that your life will ever be anything but worse.
After six months in my new place, my mom was declining badly. She was on a host of drugs to help her with the depression and confusion, but they sometimes only worsened what they were supposed to be helping. Mom would become angry for no reason. She'd scream at me because a son shouldn't be kidnapping his mother. She'd pound on windows to try and escape. She'd start crying and couldn't stop.
One day she complained of chest pains. Thinking she was having a heart attack I ran her to the ER. It wasn't a heart attack, it was constant stress generated by never-ending confusion. Her doctor was very concerned.
But not for my mom.
He was concerned for me.
"What are you doing? You can't take care of her like this." And he was right. My entire life had become about trying to keep my mom from going off the edge, but I didn't realize she had already fallen off. And I was falling with her. It was then I knew that she should have been put somewhere that could help her months ago, but I would never admit it to myself because admitting it would feel like I was giving up on her.
After weeks of searching, I found a place I could live with where she could live.
Driving her across the mountains to her new home was about the hardest thing I've ever had to do. Maybe it is the hardest, I don't know. All I do know is that it felt worse than any heartbreak I've ever had and I spent a lot of time after wanting to die.
But it was just a warm-up for what was to come.
When it comes to dementia, things always get worse, remember?
There is nothing... and I mean nothing... that can prepare you for that moment where your own mother doesn't recognize you. You can read all the books that exist on dementia... you can think you are prepared and be able to accept it when that day comes. But you're wrong.
If you want to know what that's like, there just aren't words to describe it. There is no pain... no suffering... that will cut you quite like it. This video might give you the smallest inkling of how it goes. The whole thing is worth watching, but you can fast forward to 23 minutes in if you want to see what it looks like when somebody has been completely and utterly destroyed...
And that was me.
Sitting in the parking lot of my mother's memory care facility trying not to die of a broken heart.
They say that when it comes to dementia you say goodbye twice, and that's absolutely true. I said goodby to my mom when everything that I was to her was gone. I said it again last night when she died. The first time was a lot harder because it was the one that matters. Relatively speaking, the second time was easier because it was just saying goodbye to the body of who my mom used to be.
And so now you know.
The reason my blog stopped on June 4th, 2016 is because I had to find a home for my mom. The reason it didn't really start up again until October 31st, 2016 is because that's how long it took for me to recover from it. You can fill in the blanks on all the entries after that where I'm having a bad day or feeling depressed or didn't feel like blogging.
Tomorrow's Bullet Sunday will be bullets talking about what I have learned in dealing with dementia. Which is almost nothing, but it still might help somebody out there who is going through the same thing. I don't think it will be published tomorrow, but when it is published, that's what it will be.
To my family and friends who have helped me so much over these past years... sometimes without even knowing it... thank you. I could not have made it through without you.
To my mom's doctors, nurses, and all the people who work at The Cottages Memory Care in Mill Creek... thank you. I cannot fathom how you manage to do what you do with such compassion and grace, and am more grateful to you than you will ever know.
And to Jake and Jenny, who gave me a reason to get up in the morning after my mom had moved out (and almost certainly kept me from killing myself on more than one occasion)... thank you too. I mean, I know you're just cats, but you're still far better humans than a lot of people I know.
And so... until whenever I start feeling a little more like myself, take care of yourself and each other.
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