About work

Tell me again how being a stay-at-home caregiver and trying to build a business of my own isn’t work. (I’ve actually had people tell me I am “lucky” I don’t do “real” work.)

I could stay busy all day just on her, but that’s not really an option. I am fortunate that my mom is still well enough that I *can* work, even if it’s just when she’s asleep, but anyone who thinks adding building a business or even working for someone else onto the demands of caregiving is out of their tree. The reality is that caregiving alone is a full-time job, if your charge needs 24/7 supervision or care.

The truth is that, when I can create space for it, I LOVE the work I do and I love the people I do it with. It gives me a creative outlet that allows me to hold onto myself, the real Martina from before FTD took over her life, at a time when I see many caregivers losing their sense of identity. I am grateful that I have so far been able to retain my own. Maybe I’m just stubborn or maybe I’m adaptable, but I refuse to lose mine, even if it means working at weird hours.

That said, all of it together is a lot, especially on the bad days.

It is also true that I’ve spent my whole retirement on care for my mom and that if I didn’t work, big parts of her care (you know, little luxuries like food, shelter, and electricity) wouldn’t be covered. If I worked a traditional job, I’d be spending at least half my pay on caregiving (and that’s only if I scrimped and underpaid some desperate, cheap caregiver, who would even accept those rates).

This country is simply not equipped for the reality that faces families with a loved one, who requires 24/7 care. And I’m not just talking about families living with dementia either, but any of the many conditions that require a dedicated caregiver. I cannot tell you how many people I’ve met on this journey who, like me, are doing this alone. And, believe me, it is tiring.

After a long day that included working with clients, writing copy, attending an online training (that was fun…I should call the Guinness world record people. I don’t think the words “Not now. I will do it for you when this is over” have been repeated that many times in 90 minutes EVER), figuring out how to unlock the bathroom door after my mom locked us out and undid the precaution I’d MacGyvered to keep her from doing it in the first place, and starting work on an editing project for another client. In between all that, I did laundry, cleaned up, took care of my mom’s needs as they came up, and made soup.

So, yes, tell me again, how I don’t have a “real job”…

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No more Cordon Blah

We have always loved food in my house and, thankfully, my mom has not reached the stage of her illness, where she doesn’t want to eat. In the past, we ate out a lot, but between my mom’s stamina not being what it used to be, trying to be better budgeters and wanting to focus on brain and heart healthy meals, we’ve been eating in a lot more.

It’s actually turned out to be pretty great, because I’ve rediscovered my love of cooking and trying new recipes I used to do that a lot, but somewhere along the line when I was working a corporate job with heinous hours, I stopped and we started going out and eating blah convenience foods more and more. Because my mom is German and I actually like having my bigger meal earlier in the day, we’ve adopted a semi-German way of eating, where we usually eat our big meal at noon, then have something lighter in the evenings. I find that it gives me a lot more energy for the day and I snack less, which is helps with my lifelong Battle of the Bulge.

Image from: https://www.tasteaholics.com/recipes/breakfast-recipes/avocado-toad-in-the-hole/?fbclid=IwAR0KRNt9_D8TcIAF2AI9Ej0CeDnDZi2np5c6fGCl4rKdliCPtJGHwLY0sbs

Today, we had an experimental breakfast, which turned out to be pretty good — Low-Carb Toad in a Hole. Instead of frying your egg in bread, you bake it in an avocado with salt and garlic and cheese. It was pretty tasty. We had ours with a side of berries, which made for a really brain healthy  way to start the day. With my mom’s illness having a genetic component, that is something that is becoming more and more important to me as I level up. I’ve got a big birthday coming up in March and want to keep my mind sharp for not just as long as I can, but forever. Having seen my mom’s illness up close, it’s not something I’d wish on my worst enemy, let alone myself. You can’t go through life thinking the worst is going to happen, but you can make good choices and I am doing my best with mine.

Releasing

Last night was the full moon. In the tradition I follow, it is a time for healing and releasing and, boy, do I need a lot of that right now. I’ve been really depressed lately,  which is par for the course. Caregiver depression is not uncommon and I’m certainly experiencing a lot of the symptoms. It drives me crazy, though. I am usually a pretty resilient, glass half full kind of gal, but lately I just feel a combination of sad, sometimes hopeless, and angry at nothing in particular. So much these days feels out of my control. While I am committed to and want to take care of my mom, there are times when it feels like I am growing old while life passes by, even though when I look at it objectively, all things considered, I’ve managed to hold onto a lot more of life than a lot of caregivers manage.

I am taking care of my mom alone 24/7 with no breaks, yet somehow I have managed to build a very modest business that allows me to do creative things I really love doing and that allows me to work with with clients I really like as people, even if I can only devote myself to it part-time right now. I have really good friends, who are there for me when I need them (and even when I don’t and even though I am not presently able to give back to them at anywhere near the level they give to me). We occasionally get out, albeit not as often as we used to. I have food, shelter, and pets that make me crazy, but that I love as fiercely as any family (because they are family). My mom is still around. At this point, while her short-term memory is never great, the less pleasant parts of her FTD are like storm clouds passing through and we can still have conversations.

That alone is a huge improvement from the situation nine months or so ago. It’s interesting, actually, that all the behavioral things evaporated almost immediately when I pulled her out of adult daycare. Even though she enjoyed it in the beginning, she seems much happier just being home with me than she was at the end. That is an aside, but the point is it’s not that I don’t have a lot to be grateful for, because I do.

But there is a lot to be sad about. I don’t feel sad most of the time, but sometimes it’s like it banks up and then I start feeling like I do now and working desperately to pull myself out of it, because I know if I let it get out of control, it will paralyze me and that would be disaster. That’s why I love the full moon it’s a monthly time to release and recalibrate and that makes me feel better. It’s amazing how much better I feel after doing some work for myself and others last night. Everything is not perfect and it will take some time to pull myself out, but I feel like I can breathe again, which is not something I was feeling when I made my post on Thursday.

Holiday Blues

Back during the brief few years in my adulthood when I used to go to church, one of my favorite things it did was a Blue Christmas ceremony early in the season. I never actually attended it, because it wasn’t something I needed for myself at the time, but I liked the idea. The holidays are not some picture perfect Norman Rockwell gathering for everyone. For people who are grieving the loss of a loved one, grappling with illness, loneliness, depression, even poverty, they can be a really stressful and lonely time.

While I’m pretty good at staying positive and focusing on the good in my life, I have to admit that I’m having a hard time these past few weeks and am feeling really alone and aware that when my mom passes, I truly will be alone. I don’t know if it’s the holiday, the idea of moving, feeling uninspired by the work that used to light me up, stress in general, or all of the above, but the start of the holiday season this year has me feeling really alone and fragile in a way that I’ve not ever experienced before. They always say that caregiving is really isolating, but up until lately, I hadn’t really felt that, because I am generally pretty happy doing my own thing and, even though my family is really small, I do have nice friends.

While my family is really small, the only time I really notice how alone we are is during the holidays. Before my mom got sick, we’d spend Thanksgiving with friends and we didn’t really celebrate Christmas in the way most people do. Sometime after my dad died 22 years ago, we stopped exchanging gifts. I’m not sure when it happened, but at some point our holiday celebration morphed into choosing a charity to donate to, having a nice meal, and getting tickets for a play or concert we’d both enjoy and it was lovely.

Now that it’s a bit harder to go out and do those things, our tradition has again transitioned into spending the day quietly at home, pretending it’s just a normal day.  Even if we wanted to exchange gifts, it wouldn’t be much of an exchange. It’s not like my mom is going out shopping and it just feels sad, empty, and very one-sided to wrap presents no one will remember an hour later. The same goes for cooking giant turkeys and sides that will result in weeks worth of leftovers. And I’m just not up for entertaining others here right now. And that’s why I’ve not really celebrated either Christmas or Thanksgiving for a few years now.

I wish I had some happy, uplifting germ of wisdom to finish off this post with, but I got nothin’ except for that the only way out is through. I know that the nature of the universe is that everything moves in cycles. This sadness will pass and I’ll be back to my usual self if I wait it out. For now, it’s just a shadowy time and, holiday or not, it is what it is and I’m not up for pretending it is anything other than that.

I am off to exercise a big heap of self-care in the form of a book and some pie. Whatever you are doing today, I hope you enjoy it.

Un-Thanksgiving

Dementia makes holidays really weird.

This year Thanksgiving really snuck up on me. We didn’t have plans anyway, but for some reason, I thought it was next week and not this week. Now that it’s almost here, I’m not even sure that I want to make an effort. Turkey for two is kind of sad. And ever since I accidentally poisoned myself with bad broth used to moisten the out of the bird stuffing we had one day last winter when I was jonesing for stuffing, I’m not sure that it is still my favorite turkey day side. We had a good run, stuffing, but it’s time to move on.

But back to holidays. Honestly, they’re staring to become a bit of a conundrum. On the one hand, it’s nice to do something, so there are some special days. On the other hand, reality is that my mom won’t remember it the next day or even last that evening and that doesn’t do much for the part of me that is just tired (and maybe a little lazy). So, unless something miraculously changes in the next few days, I think we are going to treat Thanksgiving like any other Thursday and maybe just have one of our favorite German dinners (chicken with potatoes, gravy, and red cabbage) and maybe some pie for dessert or maybe we’ll just take off and go for a drive somewhere pretty.

Right now my priorities are more heavily weighted on packing things up and cleaning the floors — and ongoing task between my mom and the dogs. None of them have huge respect for “I just cleaned that, could we even just pretend to try not to track mud/pee/dump what we’re eating or drinking all over the floor?” It’s funny. In my family growing up, I was definitely the messy one. Now I’m the one who is complaining about people leaving their crap wherever they stand instead of putting it away. And honestly, the last thing I feel like doing at this point in my life is dirtying a ton of pots and pans cooking a big dinner for two people, especially when I know my mom will get just as much enjoyment out of going for a ride or even just out for dinner, because we can be thankful and have fun anywhere. Also, holidays with dementia are weird.

Suddenly I’m the mom

It is a bit of a regret that I never had kids. I like them. I always pictured myself having them, but it was always “later.” Now it’s later and here I am. Sometimes I toy with the idea of adopting or fostering, but life is a bit complicated these days. Perhaps after we move and get settled, I’ll look at it again.

As things are, there are days when I feel like I already have a child. I don’t like to say that, because I am a big believer in the idea that my mom is NOT a child. She has an illness. It affects her cognitively in some ways, but she is still an adult with a wealth of experience and wisdom of her own, even if it is starting to come to the surface in different ways than it once did.

Still, I am responsible for a lot of mom duties. I do all the cooking, cleaning, laundry, shopping, making sure she has clothes, takes a bath, doesn’t wander off, gets her medications, goes to the bathroom, doesn’t toss her disposable underwear, half finished drinks, and food leftovers just anywhere, has transportation, pay all the bills, make her medical appointments, attend them with her, deal with ridiculous social workers who have no concept of what dementia really means for the patient or caregiver, advocate for her with her medical insurance, medicaid, doctors, etc. (there is more to do there than there should be!), cater to all her demands/needs/wants (which are always urgent), deal with her incessant need to be going somewhere all the time, makes sure she eats, says things like “you need to eat your peas before you eat dessert” and “no, we can’t go for a walk right now, it is icy out.” I also never leave her unattended. I reassure her when she’s anxious. I entertain her. I go for drives with her. And I literally do not go anywhere without her and haven’t in ages, though I don’t really care about that.

When my mom was having behavioral disturbances, I was the one here being screamed and called names, installing special locks on all the exits, and sleeping on the living room couch just to be sure she didn’t find a way to wander off in the middle of the night. Oh, and I also work and take care of our pets. Between her and them, I feel like I’m constantly cleaning. I think I’m done with one thing and there’s another mess to clean up. I don’t mind having her around or looking after her, but it’s, honestly, exhausting sometimes.

I beat myself up sometimes about “dragging my feet” on our move. I’ve been trying to clean and purge and pack things we don’t often use and get ready for “We buy your house for cash people” to come and make offers since I decided in summer that we would be financially better off selling the house and moving to a less expensive, quieter area where I could breathe and focus on building my business and future instead of constantly scrambling to meet Portland’s inflated and rising prices and I just can’t seem to make any headway. Part of it is just the difficulty of selling my childhood home and the memories inside it as well as fear of taking an offer on our house, then not being able to find a new one we like quickly enough, but most of it is just that I am one person trying to do the work of three. It’s in times like this that I wish a I had a husband or partner to rely upon for help with decision making. Still, I have to push forward in the hope that things will be less of a struggle, if we move.

To move or not to move?

I have always loved being near the ocean.  I am not a surfer or snorkler or anything like that, but just being near the water has always made me feel at ease. It always has. I can sit and just watch the surf for ages and there are places like Astoria’s Megler Bridge, near where the Columbia meets the Pacific Ocean, where I can just feel the tension melt off me as I get to the low part near the Washington side where it feels like you are just surrounded by water.

So, when it started to dawn on me that it may not be feasible for us to stay in the house I grew up in, I started thinking about moving to the coast. Though I lived near the beach when I lived in California, somewhere in the back of my mind, I’ve always had this fantasy of living in a woodsy coastal area in the Pacific Northwest. In my imagination, I have a deck and large windows, where I sit with my coffee (which is amusing as I’m not really a big coffee drinker) and watch the deer stroll through my yard. I take drives down the coast with my mom and we build this pleasant little life where friends come to visit and everything does not feel chaotic like it does here.

I know that some of this vision is fueled by escapism and idealism, but it’s a way to turn something sucky (possibly selling my childhood home to move somewhere with a lower cost of living) into something that gives us the opportunity to release some debt and gain some breathing room, while also fulfilling a wish of sorts. And I do think that the combination of lower cost of living, slower pace, and the restorative properties of the ocean probably would make me feel a less stressed out, but I’m having a hard time turning it into a 100% “Hooray” kind of thing.

I have my days when I am really excited at the prospect of starting over and others when I just want to hide under blankets and not have to deal with any of it. I worry about the effect it will have on my mom (change is not always a friend to dementia and things are going relatively well now), so there’s this constant trying to balance the financial boon with the worry about how she’ll do with a move. On top of that, I feel pressured to move before the Republicans can dismantle healthcare and enact pre-existing conditions clauses that leave my mom without insurance, if try to move and have to switch carriers.

Originally, I had been looking on the Long Beach Peninsula, because I really like it there and it’s close to Astoria. Then, I was shanghaied to the Grays Harbor area, by a house that turned out to be mediocre and on a flood plain, but on the most beautiful piece of land. It turned out to be not for us, but did open the door to looking a little further North. I thought I’d had all our problems solved, when I discovered ocean shores a sweet and delightfully boring looking little coastal community in Washington, where I could take care of my mom, stare at the sea, write, and work at home.

There are a lot of houses in our price range, the lots are private while still being near people, so a nice mix of seclusion and human companionship when you want it. I was ready to go. Then I learned that they have a cap on how many pets are allowed and we have one dog too many. I then started researching other communities around the area and many have the same stupid rule. Getting rid of one of our herd is not an option, so here we are back at square one, looking around the Long Beach peninsula and the options are not overwhelming and I am absolutely terrified that I’ll sell our house and not find something that makes me happy and be stuck. It’s all just scary and there are times when I really hate being the adult and making the hard decisions.

At the same time, I know we’re really lucky to have the luxury of being able to consider selling our house and being able to do so before the cost of caregiving and having dementia drives us out. I know so many people, who are struggling and don’t have that option. Our house nothing fancy, but it still has a lot of emotional attachment. My dad is here. My childhood is here. I never thought I’d be in the position of feeling like I might have to sell it or that I’d be worrying about these sorts of things as I slip into my own final decade or two of work. All planning for my own future has evaporated while I just try to get through my mother’s now.