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.

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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.

I am angry…and it’s okay

The other day I had a disagreement with an acquaintance. She likes dog breeding and dogs shows and I don’t. I don’t really want to talk about my reasons beyond saying that I am not a fan of businesses that use animals as commodities or for entertainment. The disagreement is just set up for talking about some other thoughts. People disagree. Even good people  have different opinions. In general, unless we are treading into morally charged territory like racism, misogyny, bigotry against specific groups, etc. differences are no big deal to me.

The difference in opinion would not have bothered me at all, but what did bother me was the framing she was using that included speak like “you know better” and “you don’t really believe that.” What I find most ironic is that she felt her opinion was being silenced, when I told her “You have a right to your opinion, what you do not have a right to do is come into my space and tell me what I am allowed to say or what I really think.”

The use of language like “You know better” or “you don’t really believe that” is a tactic (even if an unconscious one) to delegitimize someone else’s point of view. There is a huge difference between “I disagree and here’s why” and “You don’t know what the right thing to believe is, so I’m going to tell you now.” Disagreeing with me is fine, diminishing me is not.

To add insult to injury, she also made the utterly laughable suggestion that I was just being contrary, because I had a bad experience with a social worker a week or so ago. Like I can’t separate out a completely unrelated experience from general worldview? Like I have one facet of me (caregiver) and can’t have thoughts and opinions unrelated ot it? Please. I’ve had men do the whole “You’re tired/overwrought, etc.” bullshit on me, but to have another woman do it to me while telling me I don’t know what I think and screaming that her voice was being squelched (sorry, lady, your voice extends to sharing YOUR opinions, not telling others what their should be) is what really triggered me.

And, yeah, I’ll admit I was triggered. I work really hard to educate myself and don’t just based my well thought out world views on whim. As a result, it’s annoying to have someone talk to me like I’m some kind of hysteric or child, who doesn’t know her own mind. I’ll even admit that there’s probably some ego in there. The thing is that I make some of my money teaching women to use their voices and speak up, so I don’t feel like I can just let someone come into my space trying to dismiss my views without speaking up for myself, if I don’t want to be a complete hypocrite.

While I probably would have made an effort to make up had she been an actual friend and not just a random Facebook acquaintance, who travels in a few of the same groups I do, I didn’t really let the nonsense go too far before making it clear I was done. She ended up unfriending me, which is unfortunate, but fine. I am not for everyone and everyone is not for me. She will find her true people just as I will continue to find mine.

The whole experience reminds me how far I’ve come in terms of boundaries. There was a time, when I would have let her bully me and would have left the exchange worrying that I was “wrong.” That’s not to say that I don’t review my actions and look for ways in which I might have handled things differently, but I also don’t immediately assume that I am the one in the wrong anymore and take all the responsibility onto myself, which is something I used to do.

The biggest difference today is that I know my boundaries and enforce them. One of my boundaries is that dementia makes my life dramatic enough. As a result, I don’t tolerate drama in my space, especially not from people who are no more than acquaintances (real friends and family get a little more leeway, because there’s more investment there). It doesn’t matter to me if you’re a friendly acquaintance or even a potential client. While I do try to be understanding and fair, I also don’t do drama and my door closes, if you bring it to my doorstep.

And that’s the thing when you’re living with a situation like an illness that carries with it a high baseline of responsibility and stress. You have to find ways to protect your reserves. It’s really important to me these days that my reserves go toward taking care of my mom and also myself. That means that I have some pretty hardcore boundaries around what I tolerate and that I say “no” a lot more these days than I ever used to.  If things were different, I would probably be a little softer about some of these things, but my priorities are my priorities just as my beliefs are my beliefs and no one else gets to tell me what I believe or what’s important to me. It’s our basic core values that give us the strength to fight another day.

While I’m sad for any anger or hurt over what should have been a minor issue aroused on either side, when I look at how far I’ve come in knowing and enforcing my boundaries, I’m actually pretty proud of myself. And so, I thank the universe for this experience and for the way in which it showed me how much stronger I am now than I ever was before and I release it and say go with the Goddess, but go.

Remembering

Earlier today I was going through some old posts on a now defunct blog, looking for a piece of writing. In the way of looking at old diaries years later, reading it now is an interesting time capsule of what my life was years ago. Life is so different now and I have to laugh at some of my frustrations. Back then, I worked crazy hours in a corporate job and probably complained too much about it. While losing it after 13 years was a shock when my company underwent a massive reorg in 2015, I can’t really say that I miss it at all.

Looking back, what I do miss is the amount of writing I used to do. I write a lot for work these days, but I don’t write just to spill out my thoughts much anymore or even just to record what’s happening with me. I am going to try, though, to do so more often and in more free form on this blog. I think it would perhaps be helpful, and while there are plenty of things that I miss from my old life (time with friends, travel, socializing, being spontaneous, etc.) at least this one is one I can actually do.

Early Diagnosis

http://www.thejournal.ie/alzheimers-disease-dementia-4207595-Aug2018/

Even though this article focuses on Ireland, it’s no less true in the United States. As with mental illness, there is a lot of stigma around dementia. We aren’t embarrassed when we have a broken limb or a malfunctioning kidney, but everything changes when the brain is involved. Patients may not want to admit that their mind is not as strong as it once was and the problem is further compounded by poorly trained doctors and medical staff. And that’s sad, because the best we can do for dementia right now is slow the progression and the earlier therapy starts, the better.
 
My mom went to the doctor for over year telling him there was something wrong with her memory and he kept blowing her off, telling her she was just getting older and not to worry about it. Then, when we finally did find a doctor, who would listen, she was misdiagnosed with Alzheimer’s and the diagnosis was delivered as, “She has Alzheimer’s. Here, fill out an advance directive, because she’ll eventually forget to swallow and starve to death and you’ll be dealing with feeding tubes. Come back in six months.” That’s it.
 
The only “education” provided was the doctor trying to pressure my mom, who didn’t want to, into refusing life saving measures. And this was at Kaiser Permanente, a huge HMO that has vast resources and no excuse for properly training its staff with not only knowledge, but compassion, neither of which were exhibited in my mom’s diagnosis.
 
There is simply no excuse.
 
As we’ve walked through the medical system in subsequent years, we’ve encountered some really lovely medical professionals and also several who had no idea how to interact with a dementia patient. Some ignore her completely like she’s not there, not a person. Some don’t seem to grok at all that she has dementia and isn’t always going to be a reliable source of information. Some just give up on scans, x-rays, exams, when she has a problem sitting still for them. Because, hey, she’s dying anyway, what does it matter, right?
 
Well, it matters to me and to millions of other people who are fighting dementia or caring for a loved one with it.
 
And it should matter to you too.
 
One in three seniors will die with dementia and dementia kills more people than breast cancer and prostate cancer combined.
 
I guarantee you, it WILL affect you or someone you love. Educate yourself. Keep an eye on your loved ones. Don’t be afraid to keep pushing, if you think something is wrong and no one is listening to you. Your life or that of a loved on may depend on it.

Banshee

A howling banshee
Screaming in my face at dawn
This day will be long.

Yelling. Shrieking. Door slamming. Hiding. Paranoia. And then sometimes they’re so sweet, you could almost forget. That’s the cruel trick of dementia. Just when you’re lulled into feeling semi-normal, it strikes.

The best part of when my mom gets like this is that she won’t take the pills that make it stop. During the day it’s easy to keep the medication steady, but at night, if you don’t wake up to do an extra dose, this is the morning. It’s enough to make you dread the dawn.

And for a while, I really did. It took several months to find our current medication cocktail. Before that, there were times when the screaming went on for hours. I counted the hours until she fell asleep and dreaded her waking, because I knew it would all start over again.

Thankfully, these days moods are mercurial and pass over us like clouds on a windy day. I’ve also learned how to ride it out and not exacerbate it, even though it’s not exactly pleasant. The wheel keeps turning and I know she’ll get back to herself again. So, now we wait for a window of pleasantness where I can get her to take her “vitamins.”

And people think dementia is just “Oh, grandma, is so sweetly eccentric or forgetful. Isn’t that cute?” If only…

Caregiving is not for the weak and there is no God in the clouds doling it out to only those who can handle it. It is thrust upon you and you learn to do so, because we humans are more resilient and resourceful than even we imagine.

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