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

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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.