On the Road Again

We have our car back! Actually, we have had it back for a while now and are free of electrical problems including the too small battery, which was jiggling its way loose, which makes life so much sweeter. We’ve fallen back into our routine of going our for drives and, despite my generally apathetic feelings (on a good day!) about the holidays these past couple years, we may even venture out to go see the Christmas lights at PIR’s Winter Wonderland one night this week. It will be something special that my mom can do and if she can do it with a peppermint mocha or cup of hot chocolate and some treats, she’ll be happy as a clam.

The only problem with drives is that it’s sometimes difficult to get her to come into the house when it’s time to come home. FTD can be such a baffling disease. We can have an absolutely lovely afternoon eating lunch, singing with the radio, and driving around looking at the scenery — so lovely I almost forget for a moment. And then when we pull into the driveway and it’s time to come home, suddenly I’m not longer with my mom but Obstinate Irma.

That’s how our trip yesterday was. We returned cans to the Oregon Bottle Drop and stopped for lunch in a drive to the country. I tried turning on some Christmas music, which just made me cry, because holidays don’t feel like holidays anymore and I mostly try to ignore them rather than go through some charade of pretending like we’re in a Hallmark movie instead of eating half-assed Thanksgiving by ourselves.

My mom was so sweet, promising she would never leave me, which, of course, she will, because she’s going to die. We’re all going to die and she’s 80 and probably would not live another 20 years, but I already know how her illness ends. It’s just a question of when and how much more of her I will lose before that happens. That breaks my heart, because my mom has always been my best friend. And that’s why holidays, birthdays, and other milestones are so difficult. Even though I appreciate that she is here now, there’s always this question of whether we’ll get another one, which then makes me feel guilty for dreading the holidays as much as I do instead of finding ways to make them more meaningful.

But, yes, it’s bvFTD is a strange, strange condition. It can go from 6 hours of driving around being sweet and having fun to a massive tantrum or flat refusal to cooperate in moments. I’m about ready to start keeping books or something in the car to entertain myself those times when she won’t come in, because I’ve found that it’s best to just play along and let her fall asleep, then wake her up and use the initial grogginess to cajole her into the house, but I’d still take that over being cooped up inside for days on end. And having the car again makes for much more pleasant days.

It also means that I can restart our new home search — another thing I’m ambivalent about. I know it’s the right thing to do in the long run, but I so don’t want to leave the house I grew up in, even if it’s not anything fancy. It’s just too hard to keep up with Portland and the skyrocketing property taxes and cost of living here and I know once I bite the bullet that I’ll be happy, if we end up somewhere pretty where deer wander into the yard and there are natural areas nearby and new places to go for drives.

It’s scary too, though. I don’t get a lot of help in the form of in person support save for a couple true blue friends, who I know I can call in an emergency or a ride or groceries, if I can’t get out to go to the store or need help. I have always been pretty independent (thanks, Mom!), but the idea of being alone in an area where we don’t know anyone is really daunting as is the idea of actually going through the process of selling our house and moving, which is why I’ve been dancing with this idea of moving for about year and a half now. But my ancestors crossed the plains and even my mom crossed an ocean to come here. I can find a way to make moving two hours away work. And sometimes it feel like a fresh start could make life a bit happier as well. We shall see what 2020 brings…

The Motherload

Today I found the motherload, the place where my mom hides her pills. It is amazing to me how someone with cognitive decline that is so marked in some areas can be sneaky and crafty enough to hold her pills in her mouth, then spit them out and dump them in a regular spot when she thinks no one is looking. This does explain why it seemed some of her medications weren’t working as well as they used to.

I don’t know what it is in her progression that causes it, but suddenly she is at times resistant to taking her medication. Sadly, she puts up the biggest stink at those times when she needs it most. She took is today, but is due again. After being stuck here without a car for so long, I had hoped that we’d be able to get out today, but she’s spent most of the morning in her hidey-hole aka the spare bedroom popping out the door like a little mole to yell things like “Where are we going?” before retreating back inside.

I am so nervous lately that I’m finding it difficult to just sit. I had told myself I would take today off, but the doing nothing is making me crazy, so I find myself either working or cleaning, two tasks that feel like they are never done. I have a blog project on family friendly activities in Ft. Myers for a client, but I can’t seem to focus, so I decided to try working on a translation project for another client, but, again, it’s just hard to focus. I also just don’t sleep well these days.

She had me up at 2:45 this morning. I did finally manage to go back to sleep sometime around 4, I think it was, but it’s not a very restful kind of sleep when you’re up constantly and didn’t go to bed until after 11 to begin with. I just don’t know. I spend so much of the time worrying and life feels really lonely sometimes. I would so much like to have my mom back and to be able to ask her for advice like I used to. It just sucks that the one person I would normally talk to about all of this is the one person I can’t talk to and never will be able to again in that way.

I think a trip out would do us both good, so I will keep trying to cajole her out, even though I’m wary of a meltdown once we get in the car or try to come back in the house.

We Survived!

Yesterday was the day of my long-awaited car appointment. I get so nervous when people come to the house, because I never know how my mom will behave, but she was in a blessedly good mood for most of the day and we got through the car appointment with little trouble.

I feel lucky it went so well, because today is another story. She has been pretty quiet all morning, hiding out in her room. About 45 minutes ago, I heard the door open and her call my name and scream “Get your ass in here,” to which I responded, “I am working and please don’t talk to me like that,” even though I know it’s just her brain misfiring and that she doesn’t really have any control when it does these things. Since then, there’s been intermittent door slamming and occasionally yelling of gibberish. I am bummed. I had hoped that once I was done recording the lesson for the Dark Queen course I am teaching, we could have a nice afternoon out in our newly fixed car. It’s only 11:45, so perhaps things will turn around, but at this moment friendly for public consumption is not looking too good. I’m not sure how people always realize how at the whim of our loved one’s moods we are.

I have (or maybe had — I haven’t heard from her in a while) a friend, who was constantly wanting to stop by and come over. I am pretty sure she didn’t get why I was maybe not as keen on the idea as she was. It’s nothing against her. In the old world, I loved entertaining and having people over, but in the new world, it’s honestly just too stressful sometimes, because it disrupts our routine and routine is everything. It’s also hard to plan things. I don’t go out much these days, but when I do, I end up cancelling plans a lot. Sometimes it’s easier and less disappointing to just not make them to begin with. It was hard for me to adjust to that and also to the idea that I can’t just take off and go on spur of the moment adventures anymore, but I don’t think other people always understand it.

The truth is that caregiving is a lonely job. Of course, not everyone does, but a lot of people just fade away, even people you thought you were close to. Some of that it them not feeling comfortable with death and not knowing what to say. Some of it is that they were only there for the good times anyway. And some of that is that this journey changes a person. I’m not the same person I was five years ago. It’s not easy to watch your friends doing things and having adventures when you used to be the one constantly on the go. It’s not easy to not be jealous when they do. It’s also not easy to care about the things they care about. I couldn’t give two fucks about my one friend’s retail therapy group where she posts pictures of things she wants to buy or about sales at Saks or anything like that. I care about time and paying bills with a reduced income and hating FTD and not losing myself and how to keep my mom from dying, even though I know she will no matter what I do.

I will not be the same person when my mom dies, and save for a few, who hung in for the duration, I won’t have the same friends either. A few die-hard lifers, sure, but not all of them. It’s just reality. How could I? It’s not like I can pick up where we left off with the the ones who bailed when the party was over.

Stir Crazy

Do you ever get to the point where you get so sick of your own cooking, you can barely stand it?

We don’t go out a ton these days, but due to the broken car, we’ve been grounded for a couple weeks now and I swear I’d cut a bitch for a gyro or some french fries or pretty much anything not made by me at home. It’s not even that I’m a bad cook. I admittedly get lazy these days when it comes to cooking, but I’m a good cook and I like to explore different types of cuisines. We eat homemade pizzas, fried oysters, tagines, curries, all sorts of things, but I’m SO bored of myself and things that can come to me via grocery delivery.

And the truth is that when you’re caring for someone who can’t be left alone ever and isn’t always fit for public consumption, sometimes it’s the little things like a trip through the drive-thru that make you feel normal. Not being able to use my car and having to rely on others for rides and such just makes me feel like I’m suffocating. Even if I don’t always go out, I need to know that I could, if I wanted to. You know how it is when you can’t do something. Suddenly it becomes that thing you MUST accomplish or surely you will die.

Thankfully, the monotony was broken up a bit our the trip to the waterfalls last week. I’d be a hundred times worse, if I hadn’t gotten out that day. Honestly, that is the thing I miss most when it comes to being a caregiver — the ability to just take off whenever I feel like it and go for a ride or road-trip. I have been lucky thus far that my mom still likes rides (most of the time), but it’s not the same as the old days either. It’s always a production getting her out the door and there’s always the chance that she’ll become surly and want to go home or have a meltdown in the driveway, because she doesn’t want to go in the house. It’s not the same stress-free thing it once was because her behavior is always a bit of a crap shoot. It used to be that she never got angry on rides. The car was like our magic, FTD-free place, but now she occasionally gets miffed there too (though less often than at home).

The good news is that I now have the money for my new alternator, so we are again on the precipice of freedom. I really hate that I have to worry about spending the money and having enough when these sorts of things come up. I’ve never had to budget like this in my life. This i going to sound so weird, but lucky for me and my alternator, a few years ago, a friend hit someone while driving my car.

It damaged my front bumper and license plate, but because I knew she didn’t have the resources to easily pay for it at the time and she didn’t get the guy’s information, I just let it go. It bummed me out that someone else dented the car I’d had for 10 years without ever having an accident, but there are worse things that befall people every day, and you can drive with a bent plate and dented bumper. When she heard about our car trouble, she offered to pay for the alternator to make up for the damage from her collision, which is a huge help. Sometimes it can feel like life still kicks you in the teeth, even when you have always helped others, but good deeds do come back to you.

I just need a ride to the bank now to deposit it, so I can pay the car people who will only come out if I give them my debit card online first. Today was not a great day for that, because I am fighting a cold and my mom has not had the best day either, but if we don’t make it out to make a deposit tomorrow, I may break down and resort to GrubHub or pizza delivery, because I cannot take another day of my own cooking or pretend that getting a lukewarm deli eggroll from Safeway Instacart delivery is the same thing as eating out!

Something good

Despite the car troubles and sleep issues (my mom has taken to waking me up every hour or two with her final wake up call between 4-6 a.m.), this has been an oddly good week. Not a morning person at the best of times, I’ve been exhausted, run down, and fighting a cold, and just generally kind of down lately, so it was nice to have a couple really good things happen this week in the midst of all that.

First is, I am now a freelance writer! I’ve always loved writing and people have always told me I write well. I have a bit of a stream of consciousness, dear diary approach to this blog, so maybe it’s not the best example of my writing chops. What you read is mostly just what came to me as I was typing without a lot of planning or editing unless I see something that is just grossly wrong. It’s meant to be informal, low-stress, and really just a place to vent and give people a window into what it’s like to be a caregiver for a loved one with dementia. But these new contracts are different. These are writing for other people and their businesses.

A couple months ago, I enrolled in a class called The Happy Writer to learn more about blog and copy writing for entrepreneurs and businesses. I do all of that for my own business already, but had never been formally “trained.” I just knew things from reading books and observing what other people were doing.

When I saw the course, I figured I could learn how to do it the “right” way and maybe even pick up a couple writing clients. In the past, I’ve never had the nerve to apply for writing jobs even though I’d always wanted to. Anyway, after getting half way through the course, I got cocky and applied with two agencies (each does a little different kind of writing) and got them both! It’s pretty exciting for me, because it’s a validation that I am skilled enough to make money doing it. I am still in the onboarding phase, so fingers crossed I won’t have to eat those words, but it’s a start. The pay is not as much as I could make going after my own clients, but I know I will learn in doing and in working with theirs, so I am really excited.

The second piece of good news is that I’ve been following Elizabeth Cronise McLaughlin and her work with the Gaia Project for a while now. Every time they advertise their RISE Activist/Leader Bootcamp, I find myself wanting to enroll then not being able to, because money is tight. So, when they announced that they were offering scholarships, I took a chance and applied, even though I did not think I would get one, let alone a leader tier one that will allow me to participate in expanded lessons and calls.

There are some people out their doing amazing work, who have bigger reach than I do, so I wasn’t holding my breath, because I’m sure they get a lot of applicants, but I GOT IT!!! I am so excited, because I just KNOW I will learn lots of things that will help me expand the activist work I want to do on behalf of individuals with dementia and family caregivers, who largely are women and who often give up lives, careers, social life, retirement — in short, just about everything — in order to care for loved ones.

The program starts later this week and I am SO excited to be a part of it and to learn from someone who is doing such impactful work in the world. It’s so important for us to make a difference and not just sit here like lumps thinking only of ourselves.

We’re all connected and we’re meant to help each other on our walk through this world. I’m excited to get to use what I learn in spreading dementia awareness and also with the women I teach in my own programs. It’s so nice to have something to focus on that is not just the world of taking care of my mom, which eats up most of my time and energy these days, but that just belongs to me and the impact I want to make in the world with my work and life.

A Good Day

Image may contain: sky, tree, mountain, outdoor and nature

Life has been pretty stressful lately and I’m already failing at my every day journal plan, which is just not tenable right now, but that’s okay. If there’s one thing being a dementia caregiver gives you, it’s the ability to pivot at a moment’s notice. My mom had a rough couple weeks with a lot of behavior disturbance, which I now think is linked to a UTI, which is great, because its fixable and shes’s already acting a little more like the new normal after even a few doses of Azo, so I’m hoping getting some antibiotics will be even better!. Even though I want to share our journey here in the hope that it will help others, who are going through it too, the reality is that sometimes I have to stop and take care of us first. She is my first priority.

And so, between her and trying to clean up our house, looking for a new house, and trying to come to terms with the reality that I am going to need to sell the house I grew up in and move somewhere less expensive if we want to survive and not get further behind than I already am, I’ve been a big ball of stress and emotion lately and find myself short on sleep and often ready to cry at the drop of a hat. I live in fear of losing everything, especially the means to keep our dogs, who really are the main thing in my personal life that keeps me happy these days. I know I won’t let it happen, but they’re family and I could not handle losing them, so I worry about such things and have nightmares about someone taking them away. And then, when my car died a week ago and I didn’t have the money to repair it, well, that pretty much put me over the edge. I just have to keep doing my thing and trust that it will all work out.

But today, the universe gave me an unexpectedly relaxing and fun day in the form of a friend who called to invite us on an impromptu drive to the Gorge (my favorite place) on a really good dementia day. My mom can’t really get out and walk far and mostly doesn’t want to, but she was happy looking at the trees and waterfalls and eating all the ice cream she could. We, of course, don’t do it every day, but things have been so crappy lately that I happily allowed her to eat a blizzard, a hot fudge sundae and at least half my fries for dinner. We’ll go back to carefully counting and tracking calories and nutrients tomorrow. Today was just about enjoying what we can enjoy. And we had a nice time. We laughed with good friends and chatted and looked at pretty scenery. My mom was a shadow of the sweet and loving woman she’d always been, but I could see her, the real her…and sometimes that is enough.

Life as we know it

It’s been a strange few days here in Dementialand. On an outing last week, the car suddenly drifted to a halt as all the instrument panel lights shut down. We were lucky in that we were on a side street and only about a mile from home. Stuck in the middle of nowhere with a person with dementia, a small dog, and a non-moving car is not where you want to be.

Thankfully, I had my trusty battery charger with me and was able to get the car running again to white knuckle it home while my mom chattered on happily, but after talking to a friend, we think it’s the alternator. It was bound to happen. It’s a 14 year old car. I don’t know what I’m going to do when it totally craps out on me. A new car is definitely NOT in the Dementialand budget. As it is we’re having to wait until the first to get it repaire, because we can’t have a new alternator AND utilities, so…

It couldn’t have happened at a less convenient time either – two days before we were supposed to travel to Western Washington to go look at a house. I’ve decided that staying where we are is too stressful with the rising taxes and cost of living. There are too many months where were struggling, so it makes sense to sell the house and buy a cheaper one in a less expensive area. It’s such a tough decision, though. While small and by no means fancy, this is the house I grew up in. I thought I would at least have it after my mom died, because I’ve given up so much to care for her, but unless fate is going to let me win the lottery pretty quick here that doesn’t look like it’s what fate has planned.

Anyway, a friend saved the day and took us for a drive to the coast go see it. The house is adorable and old, really old for this part of the country and in a bit of disrepair. It is priced well and perfectly sized for us. I’ve always wanted to live in an old house, but the repairs are also going to cost some. I am so tempted, because the land is gorgeous. It’s pretty ideally situated near a river and the ocean and deer in the yard are a pretty sure thing. The energy of the house felt lovely too. I can picture us living there and think we could be happy, but the repairs are daunting enough that I’m not sure I wouldn’t be wasting money paying for a home inspection, even though part of me hopes that they would be manageable.

The whole idea of moving is so stressful, though I know once it’s done I could breathe a little easier. My mom is progressing and it would be nice to have more time with her. As it is, I feel like I am working constantly to keep up and have little reward for it. I have my course creation business, which I LOVE but can’t devote enough time to, because I’m constantly working on other things to help get by as I build. Lower expenses and being able to pay off some debt (which I could, if we moved) would help my stress levels immensely. At this point, I have a lot of headaches and cry too often. And between my mom’s utter lack of regard for anyone else’s need for sleep (like honey badger, dementia doesn’t give a shit) and my own worries, I am awake every couple hours and don’t really sleep. It doesn’t help that her behavior is all over the map during the day.

As a result, today has been weird. I woke up for the last time to find her sleeping on the floor in our spare bedroom and since she’s been up, she keeps popping in and out, yelling things down the hall at me about whether we’re going anywhere. It’s part of the negotiation process on whether she will come out or not. We’re in a big negotiating phase right now. Nothing is ever yes or no. It’s like living with a rockstar with a complicated rider. Her presence and willingness to do things always come with stipulations these days. She can also trash a hotel room like nobody’s business (I assume, having seen what she’s done to our spare bedroom on a bad day). She just had her medication, so it will be quiet soon. I’m hoping once she calms down, she will come out and watch t.v. or nap in the living room with me instead of popping in and out of the bedroom door like a giant mole in some kind of absurd real life whack-a-mole game. She does it so quickly, that is really what it reminds me of.

At least I got her to come out for lunch. She actually even ate a lot of it, though by the end of her bowl, she was ready to call the police on me for trying to coax her to finish all her chili. I suppose ignorance of the law is no excuse, but I worry about her and really wanted her to eat. In my defense, she is too thin and the chili turned out really good this time. Anyway, if you’re reading this before they come take me to the slammer, please send bail and money for the prison commissary. I’ve become kind of addicted to sweet chili Doritos and don’t know if I can survive without them.

I need to call her doctor again. We’ve been working on adjusting her meds. She was doing really well for a month or two on the new cocktail. It was so nice for a while, almost like having her back, but she has gotten kind of manic and erratic again, so well keep trying until we get it right. Meanwhile, I’m just tired and worried, but I have a fun project coming up starting on Halloween, so there’s that to look forward to as I try to figure out if I can keep doing my teaching or if I should but that on the back burner for a while to focus on getting more writing clients or some sort of VA job. What ever it is, it has to be from home, because that’s the only way I can take care of her and make sure that we don’t end up living in a tent down by the river.