It’s not always one of ‘those days’

Wish I would have gotten a picture of Dad’s face today while we were at lunch. There was a little – maybe 15-month-old – boy at the table next to us. And, as has been the case for at least the four decades I’ve known him, Dad was doing his best funny faces to engage the kid. It was a welcome flashback. Any kid who has ever been around Dad knows the department of funny faces, and this kid was clearly enthralled.

This week has been kind of refreshing, given that we had quite a spin two weeks ago and a houseful of family (thank God for family) last week. Things are relatively mellow, and we’re back to a more manageable set of listicles, even if I’m struggling to find other topics of conversation.

On a barely related note, I think I should have been a flight attendant. After 7,500 times answering the question “Where are we going to put everyone?”, I have the hand gestures down pat.

Things kicked off with a doctor’s appointment where Dad was severely disoriented – he couldn’t follow the relatively familiar string of events between checking into the doctor’s office until going back for his check-up when I had to step out and go to the bathroom. That was disturbing enough. But he had decided that I was going to wait while he met with his doctor, so I played along, just to see how things would go. After the exam ended, his provider, ashen faced, coming to find me in the lobby to ask me if I was ok, if he was cooking, or if he was driving. I sucked it up and gave the best answers I could, but the whole scene was a big kick in the gut. Add that on top of Dad’s cycling anxiety about everyone coming up driving me up the wall, and, let’s just say, it wasn’t either of our best weeks.

Then, the entire crew – Lori’s family and Craig’s family – were up for a week While having a houseful of people may not seem like an introvert’s dream for getting some down time, my family makes it work. Dad has multiple people to talk to, some of whom aren’t even over his persistent desire to “make you think”. I can take C out for a Mommy-Daughter day without having to worry that Dad’s missing out on a chance to get out of the house. My BIL can take on fix-it projects that I can’t because Dad will step back and let him do his thing. Which is a very good thing when the internet, the central air fan, and various and sundry other nice to have household amenities all go boots to the sky in the same week.

It was a good time, but everyone but Dad and I have departed. C’s spending two weeks with her Auntie, and likely a good portion of that in the swimming pool. Dad’s relaxed enough to laugh at himself when he forgets that C’s in Arizona.

And now the coffee pot has gone boots to the sky. Shucky darn, guess we’re going to have to go to Helena tomorrow, get lunch, and buy a new coffee pot.

All things considered, not really one of those days.

There Comes A Time When.......

......enough just has to be enough.

We hit our breaking point this past Thursday. In the wake of my Former Supposed Spouse's abrupt departure from our household two weeks ago, the remainder of his family - his ex wife, and their two children - were kind of left in limbo. He had been renovating a trailer for them to move into but it wasn't anywhere near finished. I've been trying to round up enough help to kind of throw enough of what was left to be done together so that they could at least move in but I wasn't having much luck.

Thursday rolls around and I have to take my oldest boy to Helena to spend the summer with his dad. I planned to stay overnight to visit friends and be back Friday, late afternoon. I had explained to my mother what was happening, who was going to be at the house, and what to do if she needed anything. I offered to have someone come and stay with her - a trick we have used before when leaving town for more than overnight but she said no, she would be fine. The FSS and I had just been to Great Falls overnight earlier in the month and that went off without a hitch. There wasn't even a phone call panicking because there was no wheat bread.

So, having no real fear that anything too awfully bad would happen, I went on my merry way.

About 6:30 Thursday night, I get a call from my mother who was in full on panic mode. There had been some issues the weekend before with the step-son and bringing friends to the house and some indications that maybe the step-son and his nephew (who is a couple years older) were up to no good. So I had found the step-son somewhere else to stay.

And I assured Ma that he would not be around while I was gone because somewhere in her plaque-riddled brain, she had developed an extreme fear of this child. I don't know why. He has never EVER threatened her or attacked her or even really said a cross word to her. (One of the many mysteries of Alzheimer's!) Plus, I made it very clear to both his sister and his mother that he was not to be at the house at ALL while I was gone and certainly not unsupervised.

Only his mother decided that she thought it would be okay.

And it was so very far from okay. He did come to the house. His mother wasn't there. He was picking up some clothes to take to his older brother's house. As best as I can put it together from what my mother was able to tell me through her sobs is that he came in the back door, walked right past her, didn't say a word, didn't answer her when she asked why he was there and just kept right on going out into the living room.

And she went off the deep end. I will omit the gory details out of respect for her. Just trust me when I say it was not good.

I called the police in Havre to have them do a welfare check on her because she was sobbing uncontrollably and terrified out of her mind. The same cop who responded when the FSS flipped out on me also responded to this incident. (I thank god for cops like Officer Corner of the Havre Police Department. He's one of the good ones.) No tickets were issued, he just took down the facts, had the EMTs check her out and advised everyone to go where they were supposed to be staying and stay there.

I was able to get one of Ma's good friends go over and sit with her for a bit to calm her down. And the night went on without further incident. And thank you, Mrs. Former Chief. You are an angel.


..........


When I came home on Friday, I sat down with the step-daughter and the Ex Wife and told them very calmly but firmly that they had to leave. That night. I had done my best to get us all through a terribly, horribly, awfully awkward situation but it just wasn't going to work anymore. My mother is sitting in her chair sobbing because she's afraid to be in her own house with them. That was completely unacceptable. Her health and well being and safety and serenity (such that it is) has to come first.

I have no real solid answer for why my mother had such a horrific meltdown. My best guess is that she confused the Step-Son with the FSS. And since she had heard the commotion when HE attacked ME, she was terrified that the Step-Son was going to hurt her in the same way. Those connections between people, places, things and events are being severed by this insidious.....slime...that takes away a little more of her everyday.

I'm having a hard time keeping my anger in check on this one. A sick, scared, elderly woman did something that ordinarily is completely out of character and would have never happened if she was still in her right mind. But she's not in her right mind. She never will be again. And while it was wrong, it was also completely preventable. If they had done what I told them and waited until I got home the next day, it wouldn't have happened.

Now that the extra people are gone from our home, I can see the effects of the Alzheimer's coming in and gradually fogging out the memories of this event. I will count that as a blessing. I will count my recent acquisition of a backbone as a blessing. unpleasant as the decisions it allows me to make may be.

The learning curve for this disease is as steep and twisty as a mountain road...lots of switchbacks and blind corners and falling rocks and hazards jumping out around every curve. Some of the lessons I've learned from this mess?

 -Doing the right thing is seldom the popular thing, and it's NEVER easy, but it has to be done. The people who truly love and care about me and Ma and Bug and Schmoopie will stand by me and catch me when I stumble. All you other people who would judge me, give me the stink eye, gossip about me, or suggest that I shouldn't tell my truth? Well, you know what you can go do to yourself.

 -You cannot help someone who is unwilling or unable to help themselves. I did everything I could to help the Ex Wife and the Step-kids. I did way more than most people would.

 -You can genuinely feel bad for people and the situations they find themselves in without taking on the responsibility for their problems. The world didn't wake up one day and take a giant dump on them for no reason. Their OWN actions got them where they are, NOT mine.

 -I'm stronger than I give myself credit for.

And I'm getting stronger with every tear.

Taking Time, Part Two.....I Love My Mother. But.....

There are days........

The longer my mom is around, the more I am convinced that Dad's passing, while heartbreaking for us, is probably a blessing in disguise. Anyone who knew my dad knew that he was not the most patient man. I have NO DOUBT that he loved my mother. They would have been married 50 years next June. But even before he was gone, her dementia was getting worse. And he would often snap at her because she couldn't remember what he told her to get at the store or what she had asked him he wanted for dinner or that they had made plans for an evening out that she forgot about and then told me she would watch the boys for me so I could go out for a change.

I have to believe that his short temper with her had more to do with his own pain. To think otherwise is to make him a demon and my mind just can't go there. He was a good man. I loved him. And I miss him every day.

Fast forward a couple years, and it became clear that my mom could not really take care of herself and the house and the giant corner lot yard. So, we added on a suite of rooms to my house just for her. She has her own bedroom, bathroom and living room and I am here to make sure she takes her meds and the bills get paid and that she eats something more than buttered whole wheat toast all day every day. (Seriously. This became an issue. Not that I didn't think she should eat toast all day. But WHEAT toast twice a day every day?? All that fiber? Yeah. No bueno!!)

And don't misunderstand me.....I love having her here. It's the way things should be. It's the natural progression of life. She took care of me all those years, now it's time for me to care for her. She brought me into the world and I will have the privilege of seeing her out of it.

My tweenage boys - for the most part - love having her here. But there are days.

There are days that I would give anything to have my "real" mother back.

There are days when I wish she could remember that the trash bags for her garbage cans are in the bottom cabinet of her TV stand as well as she can remember every cross word I've ever said to her.

There are days when I wish she would just do the damn dishes if she can't stand to look at them (even though they've been there LESS than 12 hours) without throwing them around the kitchen first. (We don't always do the dishes from the day before we go to bed, horror of horrors!)

There are days when I want to have all the interior doors taken off to keep her from slamming them.

There are days when I wish she could ask nicely for what she needs - for us to keep the noise down, to pick up something from the grocery store, to be more respectful of her space - instead of coming in with a full head of steam and both barrels blazing.

There are lots of days when we argue and fuss and fight.

There are days that I wish with a burning desire for some consistency. Because what was okay yesterday, is a hornets' nest today. As of this writing, we have gone at least 5 rounds a day for the last four days over "all these people" making "all this noise." She seems to think we have several extra people in the house when really, there is only one extra person. The ones making all the noise are permanent residents.

And God forbid you want to do, well, anything, after 9 p.m. When school's out. When the sun is still up. So far the list includes, but is definitely not limited to, mowing the lawn or whacking the weeds, microwaving a snack, spraying for mosquitoes (thank you Hill County Mosquito District, but could you please spray in the heat of the day when my mother is awake so I don't have to argue with her? K thanks. That'd be good.), playing outside when her window is open, or doing any sort of cleaning. In her mind, the house still closes down at 9. Until the next day, when she's up until 11 and has lost her shit twice because the dishes still weren't done. Only, we couldn't be in kitchen past 9 last night and you were up at 6 a.m.........  You see what we're dealing with here???

And all of these things I think are holdovers from life with Rex. And after he passed, life on her own. Absorbing her into our family requires some adjustments. For her and for us. Because of the Alzheimer's, adjustments are hard for her.

But there are also days when we laugh.

When I find keys in the freezer.

When I know she's seen a movie that's on TV and she goes on and on about how good it is when she hated it when it first came out. Or she really enjoyed it and just doesn't remember. We were watching Cocktails the other night and she wanted to know who that good looking guy was.  And can we have a little somthin' somthin' to drink too?

When she talks to the cats (we have four of them now and one of them is pregnant) as though they are her children. She is becoming a certified Crazy Cat Lady. She worries if they're not all present and accounted for when she goes to bed.

And there are days when I'm thankful for this hideous disease.....

Five minutes after we argue, she doesn't remember it.

Everything I cook to eat is "such a treat." Even if we just had it last week.

Much of the time I'm just tired from the struggle and if I stop to think of her future, without fail I bust into tears. Each day that goes by I see a little bit more of her disappear. Another word removes itself from her vocabulary. She doesn't remember talking to friends and relatives on the phone. She's afraid to travel to her sister's in Iowa because she always has a layover and she worries she'll get lost and miss her connecting flight. I worry about that too. But my worries are  little more.....well, sinister. Because that's me.......Anxiety Girl!!! Able to leap to the worst possible conclusion in a single bound!

There's a movie out there called Still Alice. Julianne Moore plays a linguistics professor who is diagnosed with a very aggressive form of Alzheimer's. Linguistics. And eventually, she loses all her words. I cried for days and went through at least three boxes of tissues.

I dread the day when Ma no longer remembers me or the boys. And that thought is always followed by another thought that makes me feel so guilty I want to kick my own ass.

I hope that she passes peacefully before this fucking disease takes any more of her from me. I hate it. It's not fair. I'm afraid of it.

But as much as I hate it and am frustrated by it and am afraid of it........I know that's NOTHING compared to her anger and frustration and fear.

It's just not even close.

I Had A Peculiar English Teacher.......

.......who was always banging on about how we were young and dumb and looked at the world through rose colored glasses. Said glasses were what let us do the dumb things teenagers do to learn the lessons they need to learn to become Responsible Adults. Contributing Members of Society.

I submit that those rose colored glasses are less a function of youthful stupidity than they are a measure of time and wisdom. A coping strategy that makes what could have been tragic, less so. They let us look back and see how lucky we were to survive. They let us see the humor in the situation so that we can keep our sanity and continue to live life fearlessly. If we didn't, we would lock ourselves in padded rooms and never come out again.

The older I get and the more time I spend with my mother watching her decline, the more rosy my glasses tend to be.

Last summer we had to have The Driving Talk.

Until about a year ago, mom had been driving herself where she needed to go. If we were out of her favorite bread and I had forgotten to pick it up (because I am clearly NOT the expert shopper she is. Was. Whatever.) If she was meeting the girls for coffee or going out for tacos on Friday, she did just fine with short trips around town.

Then we had the accident.

Coming back from the grocery store she was in the inside lane. She knew she had to turn right to get to our street, so she went to change lanes and either didn't look behind her or did, and because the
Toyota 4 Runner is so poorly designed for seeing behind you, she clipped the right front tire of a grain truck. The grain truck, being just a smidge bigger than her, kind of pulled the 4 Runner in towards it and then dragged it backwards creasing the passenger door and ripping open the right front quarter panel like a damn aluminum can.

In total, about $8500 in damage. It's lucky it was so new (2010) or it would have been totaled.

No one was hurt. Physically. And the grain truck only sustained minimal damage.

The only casualty of that day was my mother's confidence. Up until that day she knew she had a little memory problem. After that day, she knew her brain wasn't functioning the way it once did. And if you don't think there's much difference in those two statements, you would be wrong. It was agonizing to watch that new normal come to be. It was awful to have to explain to her day after day for a month that no, you can't take the car. I can take you or I can go get it for you. It was like a video tape set to auto-rewind and playing over and over and over and over and over.......and over again.

There were tears. There were tantrums. It wasn't until we saw her Doctor that Ma was able to grasp the severity of what happened and the possibility of something far, far worse happening if she continued to try and drive. Ma finally gave in. God bless Dr. Rudo Ambayi. She was able to get Ma to understand that not letting her drive wasn't because we were being mean, it was because we didn't want anything to happen to her. My mind had long since run the gamut of possible outcomes - getting lost, hitting a child on a bike, hitting a pedestrian, not noticing red lights and killing herself or someone else.....the list was endless and the stuff of nightmares.

Ma still has little episodes of frustration where she gets angry because we're out of something and she can't just go get it. She isn't dealing well with "being a burden." (Her words, not mine.) I am, however, learning to, as Linda said, pick the battles. It's a long, slow, exhausting learning curve. But I'm getting there.

And I thank the universe daily for those Rose Colored Glasses.

Losing a Mind

Dementia: To lose one’s mind.

As a clinical diagnosis, it means something very specific: Over time, plaque builds up in the brain, diminishing the ability of neurons to fire correctly, diminishing the ability to recall, form, and utilize memory. There are specific diagnoses: Alzheimer’s disease, atherosclerosis of the arteries of the brain, and a few dozen others. Sometimes it progresses quickly, other times slowly. It can be inherited. It’s most often a product of being a human and living a long life.

So what does it mean to lose your mind?

While many of us can picture “insanity” as a loss of connection to the reality around us – and that can absolutely be a consequence of dementia – the plebeian reality of it is a hell of a lot scarier: not being able to trust that what you remember is true.

Imagine this:

“I know we went to HR Block and filed my taxes” on January 20, of that tax year.

“Goddamnit, I went to HR Block.” April 11, the following year.

“Where does this go?” About a plate that goes in the same place it’s gone for the last 20 years.

“When did Dr. So and So move her office?” When the office has been in the same place for 20+ years.

“I thought they moved downtown.” No, that was another doctor you saw for a skin check.

“Don’t let me forget to . . . “ I won’t.

“Can I just go now?” You need to wait an hour – that’s when your appointment is.

“When is Mom coming home [from work]?” She died 8 years ago and stopped teaching 20 years ago.

“My Dad just stopped by, and . . . .” He died in 1958. And I never met him.

Think you’d be pissed off? I would. But I get to be the person who has to say, yes, I know, but . . . .

And then there are the things I don’t say. Thankfully, I don’t really care that the dishes go where they land in the cabinets and cupboards. I get irritated by the fact that he’s constantly looking for something to do, and I really don’t have a list ready to go. Not matching lids to their respective pots and cups just about drives me over the edge. And, dear god, can we stop with the telling me what to do?

But the thing that brings me to the brink of tears is when I have to be the person compensating for the fact his neurons don’t connect properly. When he tells me about talking to his dad. When he tells me about his mom dropping by. When he calls me Lois. When he clearly didn’t file his taxes even though he clearly remembers going to HR Block.

And I’m the person who has to redirect, refocus, or reframe the conversation so he can move forward. He gets mad. And who the hell would blame him? Especially for a man who has built his identity around a particularly agile mind. So he makes mental lists, repeats the details of events to himself endlessly, becomes visibly anxious when he is planning to enter a new situation, becomes angry when he realizes he’s created a memory that clearly didn’t happen. This is his life, and it’s slowly floating away on shreds of memories.

I keep hearing how patient I am. I am not patient, and I have never been patient. But since Mom died, I’ve had a crash course in controlling my emotions, picking my battles, and trying to keep the eye rolls and the stink eye and the nasty, snarky comments to a minimum. Explaining to my munchkin why Grandpa loses his temper – most often in her direction – over seemingly minimal stuff.

And, damn it, I’m angry. Because other than being here, providing structure, there’s not a damned thing I can do about. Unlike Lana, I’m not quite brave enough to imagine a world where Dad couldn’t recognize us. I hold on to the thought that (other than the time I dyed my hair black in college) Gram remembered us to the bitter end. It puts to the front of the conversation the question of what constitutes not only a good quality of life but also a good quality of death.

All of that happens, while you’re trying to manage the day-to-day with someone is no longer a person you’ve known all your life, while you’re trying to provide a secure place a person who has known you all their life to develop into a decent human being. Oh, and have a life, too.

So, if I’m angry. So be it. In our family’s case, we started having some of those discussions around life quality at end of my aunt’s life in the early 1980s, and it’s continued over the years. We have a pretty clear picture of what Dad wants: to live in his own home, to putter around, to be as in control of his destiny as much as he can for as long as he can. He doesn’t want to be in a rest home. He does not want to live on life support. My job is to facilitate that to the extent that I can.

And it’s really fricking tough some days. 

I Needed to Take Some Time......

.......to think about what I wanted to say and how I wanted to say it. I know there are many people just like me who are caring for their elderly parents. And while it can be exceedingly frustrating and profoundly sad, there are also moments when all we can do is laugh.

I am also very blessed to have my friend Linda to vent to. She's in a similar boat with her dad and her daughter as I am with my mom and my boys.

I didn't realize how much I was keeping in. Thanks for being there, sister.

My mother has Alzheimer's. She's still in the early stages of it, but little by little I can see her slipping towards the inevitable end.......she won't remember any of us. Or even herself. And when I think about that.........well, I just can't breathe.

Looking back on the last 15 years or so knowing now what I didn't then, I could see the cracks starting to appear. She was a college administrator and retired after 35 years of service to MSU-Northern. Still being fairly young, she wanted to continue to work. She took a job as a receptionist at a local vision clinic. (I won't mention their name because I'm gonna slam them in a minute and since I can't say something nice, I will compensate by not telling you who they are.) It took her a little bit to catch on and be able to keep up. And occasionally, she would make mistakes. She would get things done, but she often had to ask questions and it would take her a little longer than the other woman that had worked there since forever. (And I have NOTHING bad to say about her. She is a lovely woman who worried about my mom and wondered what was going on.) One of the doctors up and decided that mom needed to go. And insinuated that my mother was too stupid to handle the job. He treated her shabbily. Mean, even. And the other doctor, the one who went to the same church as my mother and knew her well - just sat there and let him.

And now, with her diagnosis, I want so badly to go back and say, "See! My mother is not dumb! Her brain is starting to resemble Swiss cheese and you and your pissy attitude can just suck it!"

After the eye clinic, it was a bank where she worked in the Ag Loans department. Now, I've never applied for an operating loan because I don't own a farm or ranch, but from what I gather, it's a complicated process. Every one is different and mom had a great deal of difficulty getting the paperwork and file building process down. I'm sure it's challenging for someone who's brain is fully functional. She lasted only aboiut 6 months there.

After that, she found a home with the ladies at a flower shop downtown. And they were awesome. No one made her feel like she was less than capable. And arranging flowers seemed to make her happy. I'm certain I read somewhere that creative endeavors can slow the progression and for my mom it seemed to work. She was there until the owner decided two businesses was one more than she could run effectively and put the flower shop up for sale. Ma retired for good after that.

Then the bottom fell out.

In October 2011, the pain in my dad's belly and back was bad enough he finally went to the doctor. He finished putting away the yard and the garden and then just sort of.......sagged. By Thanksgiving, we knew he had pancreatic cancer. Stage 4. Because cancer of the pancreas is one of those fun cancers that like to hide and don't produce symptoms that are disruptive until it's too late. By Christmas, he couldn't eat anymore. Shortly after the new year, we went to see the Oncologist in Great Falls to set up his appointments to start chemo and radiation. A week later, he went into the care center because mom wasn't able to care for him. Before January was over, he was gone.

And Ma was devastated.


.........


.........


Yeah.

I'm going to leave it right there for now.

't Ain't My First Rodeo

 Over the last year, Lana and I have occasionally shared our trials as members of the sandwich generation:  raising kids and managing parents who are slowly succumbing to Alzheimer’s and dementia. As one of the seminal movies of our generation pointed out, reality bites. But even when it does, it can be damned funny. Lana graciously set up this blog so we could engage in some cheap therapy by sharing our experiences with the world. Or the internet. Or whoever wants to read.

A little background. When I was in my early 20s, my grandmother was diagnosed with dementia. My dad made a number of rescue trips to Arizona to bring her home to Montana, until she ultimately ended up living with my parents, then living with her sister, then living with my parents again, then living in a rest home, and then dying at 91. We weren’t close. In fact, her visits, from my perspective, were usually about preventing anything that would make my mother lose her usually well collected shit. Probably didn’t help that the two of them didn’t like each other. But that’s another story.

My dad, well, he’s always been my dad. Not so forthcoming on the advice front, taught me how to use tools, took me to class with him when I was small and he was teaching, made it explicit that there are no girl jobs and boy jobs. Took me to get birth control when I was going off to college. Took me for task for things my then-college-aged friends did when I wasn’t around (do NOT let your friends take a class called Drugs, Communication and Society from your father). Stopped speaking to me after I bought my first house and didn’t want to wait for his schedule to move things in, until I got hit by a truck. Saw me through some very devastating times. Sat with my Mom when she died.

And, not long after, he became a whirling ball of anxiety. When my sister and I finally confronted him several years ago, he was scoffing at us in a conversation with our brother about how L and I were mother-henning him, me shouting at my nephew to take my daughter out of the house before stuff got real.  It took my brother coming out to see us to get him to go to a neurologist to get a formal diagnosis to get him to accept that he has dementia. Or not. Depends on the day.

Which gets us to here, more or less. I moved back to Montana to be with him about a year ago, after deciding that I’d had enough of corporate America driving me nuts and it becoming clear that he needed someone with him. Really, after he thought he called my sister and asked me “what are we going to do about Linda?”

While there will be a good measure of anger in my posts, the point of posting is to get the anger out. To look at it from an objective place, and, to hopefully let my dry, dark sense of humor wrap itself around the moment and give it a lively kick in the ass.

People keep telling me how patient I am, vis a vis Dad. I’m not – I’m really not. I’ve just gotten used to the fact that there’s no point in arguing with someone who’s not going to remember the outcome of the argument 15 minutes later and will re-argue the same point again. And again. And again. There is no winning. There is redirecting and reframing. And it’s fricking exhausting.

Oh, and did I mention that I have a 10 year old daughter, who is my sun, moon, and stars? And also thinks she has a priori rights to my attention when ever it strikes her fancy? As does a certain 80 year old in the house?

Welcome to my playground.