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.

Advertisements

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.

39994528_10156584627182346_4276486829114392576_n

Sharing

I share a lot about our dementia journey on Facebook (probably moreso than here, though I am trying to rectify that). As a result, I have at times had people messaging me and thanking me for sharing my journey with my mom.

The truth is that I am really private about things and my natural inclination is, honestly, to be so about this journey too. It is really important to me to protect my mom’s dignity and keep in mind that it’s not just my life I’m sharing but hers. And there are some pieces of it that I will never share for that reason. For the ones I do share, it’s a constant cycle of asking myself, “Would she be comfortable with me sharing this? Will pulling back the curtain help someone else in some way?”

The stigma that goes along with a dementia diagnosis is one of the major reasons I share. People with dementia are not toddlers or shells or non-persons. They have emotions, needs, wants, and preferences, even if they have a difficult time expressing them as the disease progresses.

I also know that people are moved by stories not facts and that’s why I tell ours. I could tell you that it is the only leading cause of death for which still no cure or that 5.7 million Americans live with Alzheimer’s or that there are 16.1 million unpaid caregivers caring for people with some form of dementia or that early onset forms of these diseases are on the rise or that 1 in 3 seniors die with some form of dementia.

Think about that.

Really think about it.

It is pretty much guaranteed that you or someone you love will be touched by this hellish condition.

But I know statistics and facts don’t move people. Stories do and that’s why I need for you to know my mom and the millions of other people like her who are people, human beings with emotions, likes, and preferences, who are dying a slow and cruel death at the hands of dementia.

Why?

Because if you know her, maybe you’ll vote yes for legislation that provides healthcare to people like her and support for people like me, who care for our loved ones. Maybe you’ll think of her and vote for a candidate with compassionate policies in the next election. Maybe when given the chance you’ll support funding for a cure. And maybe you won’t be one of the people who just fade back into the woodwork when this disease comes calling at your friend or family member’s door.

stigma

Catching up

Hello Internet,

How have you been? It’s been a while since I’ve posted anything new, partly because I have been having weird Chrome issues where my posts disappear and partly because life in Dementialand has jut been rough these past months. Life in general has been a bit rock, especially July/August. We’ve had flat tires, pet deaths, struggling with the possibility of selling my childhood home to move to a quieter, less expensive, more nature filled area. The goal is for deer to visit my yard. It’s a goal I’ve had for a long time, but as with every choice I make these days, it must be approached through the lens of my mom’s illness and what will be least traumatic for her while balancing that with the reality that I still need to have a life and need to think of my own future and happiness as well. Let’s face it, while caring for my mom is what I want to do, I’ve given up a lot to do it. I try not to complain about it, but it is a reality.

As I mentioned, early August was really rough. We had not just one but TWO beloved family pets die. Our sweet muppet-like labradoodle, Teddy, was sudden and unexpected. He was only eight. Our other dog, Baxter, was nearly 16, but is no less missed for having had months to prepare for the impending end. I know some people think they are “just” dogs, but to me they’re family and have been the one thing that makes my life consistently bearable during this really challenging time of caring for my mom. They bring such beauty and joy to life, but holy crap does it hurt when they pass. I spent a week feeling like I’d been gutted, searching what felt like in vain for some crack of light or hope.

I still miss the boys and always will, but it feels like I’m starting to come out of it a little and I’ve come out of it feeling oddly productive, like I want to tie up loose ends and get things done. And that’s a good thing, because I feel like I’ve been operating under the haze of a kind of depression that started back in January or February, when my mom started having some changes in her condition and the doctor said he would recommend not continuing regular testing anymore. She is far from death at this point, but that is one of those milestones that feels like a kick in the gut. It’s a kind of “there’s nothing more we can do, just make her comfortable.” And the truth is that there IS nothing they can do. The treatments we have for dementia at this point are dubious at best. Maybe they slow progression, maybe they don’t and that really sucks.

But I’m starting to feel more myself. I know the wheel will go up and down, because that’s what it does, but we still have to look for those moments of light where we find them.

My why

30712802_10156279637332346_5787613648499245056_nShe is the why for so many of the choices I make and I wouldn’t have it any other way. She is an amazing mom and was always a strong kind, funny, and independent role model who took such good care of me when I was growing up.

She’s always encouraged me whether it was to move away to go to graduate school, explore the world and move around in my 20s and 30s, or go back to school and start a new career when I got laid off in my 40s.

People sometimes act like I’m doing something special in taking care of her now that she’s sick or like I’m doing it for pats on the back and that perplexes me. I mean it’s nice when others see what an awesome human being I am (you can thank my mom for that!), but I really don’t care what anyone else thinks my motivation is.

I do it because she is my mom and I love her. She’s always been my.best friend and I know she’d do this and a thousand times more for me because she already has.