I’m on “staycation” this week.  I started with a bang, by getting my medical stuff in order for another year.  Physical, then mammogram.  Because I know how to party.

I had a Come To Jesus moment with my primary doc.  While I’m basically healthy (perfect blood pressure, cholesterol okay, nothing terribly alarming in the blood work), a few things came back which need to be addressed.  I’ve been anemic my whole life, but am now on mega-doses of Vitamin D, since my diet has been – admittedly – pretty crappy over the last few years.  I’m also now on prescription nasal spray, because I’m a pretty princess.  I’ve got swollen lymph nodes, not a total surprise, since this is also a chronic problem I’ve been dealing with since I was a kid.  TMJ, likely caused by stress.

And I need to lose weight.  Also not a surprise.  My doc hadn’t been terribly adamant about this until this most recent appointment, knowing the pressure I was under the last few years when I was still a caregiver.  But now that my mother-in-law is in a memory care facility, it’s time to deal with it.  Doctor’s orders and all.

I put on about 35 pounds in the years since we moved in to take care of her, mostly from stress-eating and not making time for myself to properly exercise.  I became extremely depressed in the final year she was living with us.  In the year since she moved into memory care, I’ve taken off about 7 pounds.  My doc would like to see me lose another 10 – 15.  I’m older now, and also on medication which slows my metabolism.  But what I’m being asked to do is hardly impossible.

I’m not obese, but I’m not at a particularly healthy weight, either.  I managed to stay connected with my recovery community, and therefore stayed sober throughout, but I fell back on other bad habits I’d worked so hard to keep under control.  Most of what I am dealing with is reversible, or treatable.

But as it stands, I’ve got extra pounds on me, and that feeds into my body image issues.  As much as I rally for body positivity, I fall short of the glory when I look in the mirror and start in on myself, saying things I would never, EVER say to a friend or loved one.  And that sucks.  I feel like I took so many steps back, that even the smallest step forward is barely noticeable.  I have so much work to do on myself, almost more than I did when I first got sober, to be honest.

I say all of this because it’s important for people to realize that caregivers of people with Alzheimer’s or other forms of dementia rarely emerge from caregiving without health problems of their own.  Are there things I could have done differently during those years?  Of course.  Ultimately, I chose to overeat.  I chose to sit on the couch and watch movies after putting my mother-in-law to bed, instead of taking that time to take a walk, or go to the gym.  I chose “comfort.”  I chose to believe that what I was doing was “self-care.”  I chose these things because I was in an incredibly stressful situation, and my coping mechanisms were compromised.  Even if I hadn’t fallen back into my food issues, I would still be dealing with the near-crippling anxiety, the TMJ, and – arguably – the elevated blood pressure.

Certainly everyone who knows someone with Alzheimer’s is affected in some way, but it’s caregivers that really take a hit.  I am no hero for doing what I did.  If I knew then what I know now, I probably wouldn’t have done it.  I’m being honest.  But it has made me more of an activist than I would have been if I hadn’t packed up the trappings of my hipster urban lifestyle to move to my husband’s childhood home and help take care of his mother.  And I see what caregiving is doing to friends of mine who don’t have the options we did.  And at least once a month, I get an email from someone whose parent has just been diagnosed.  Alzheimer’s is this vaguely awful thing that we don’t really understand until we’re in the throes of it, and see what it REALLY does.  And it’s fucking terrifying.  I cannot stress that enough.

I am doing the Walk again this year, as I have done for the past several years now.  And I intend to be even more of a voice for the people who are too exhausted to speak.  I’m lucky.  With the help of a Geriatric Care Manager, we were able to determine that we had the resources to move my mother-in-law somewhere safe.  I did not have another year of caregiving in me at the end, but I had choices.  So many caregivers don’t.  Raising funds and awareness is not simply for research towards a cure, it’s also to provide more resources for families and caregivers.  They need help, and they need to know they’re appreciated.

I wrote a piece for The Flounce the other day about helping friends and loved ones in crisis. Kind of a “what not to say” thing. I’m only a year out from no longer being an in-house primary caregiver, so the feelings there are still very fresh, perhaps to the point of misinterpretation.

We went to visit my mother-in-law yesterday. She has her “lively” days, and this was not one of them. She wasn’t depressed or despondent (she seldom is, and we’ve found that it’s still fairly easy to redirect her when she does become upset), but she was listless. She was sitting in the “quiet room” when we got there, napping in one of the wingback chairs, but woke up when we said her name.

What was it like? It was like interacting with a sleepy toddler. She sat in the chair, kind of cooing and babbling.

Occasionally she can eke out a partial sentence that seems like it’s going somewhere, but then it fades off into more gibberish. There are no real conversations. We can ask her how she’s doing, and sometimes she’ll remember to say “Fine.” But mostly it’s acknowledging whatever she’s saying, and not trying too hard to decipher it all. She seems contented with almost mimicking the back-and-forth of a conversation: saying something and awaiting a response. Yesterday, though, her cadence was very sing-song, like a small child consoling itself at bedtime.

Eventually, I handed her a throw pillow to fuss with, as this tends to trigger the need to tidy something, which in turn makes her a tiny bit more lucid. She stroked at it and made little furtive scratching motions on the embroidered side. She managed to do a number on several pieces of furniture that way, back when she was still in the house with us. She’d rub and rub at imaginary spots until it left divots on her coffee and dining room tables. We couldn’t salvage the coffee table in the end, but did save the dining room set. In the quiet room, there’s usually a basket of towels for someone to fold, or a box filled with sand and small plastic objects, to satisfy the urge to do repetitive tasks. I think these things must have been moved to one of the activity rooms; yesterday there were just the big leather chairs and a little white noise machine. I digress.

When we go visit, we usually pass several folks who live in the regular assisted living community, sunning themselves in Adirondack chairs or reading. The ladies are always dressed to the nines in bright colors and accessories. And I never see them without lipstick. They are fabulous. They are always happy to greet and be greeted.

I love passing them on the way in and out, but this is also painful. There are no guarantees in this life. Some of us will get to be fabulous old ladies, like my own mother, who doesn’t dare leave the house without her giant Dolce & Gabbana sunglasses that she found at a flea market.

My mother is a fabulous old lady. My mother-in-law has been essentially infantilized by her own brain.

It angers me that she’s been cheated out of being as fabulous as I know she could have been. She’s broken most of the great costume jewelry necklaces I packed for her last summer, or twisted them the around the Lladro figurines I put in her room, creating strange little works of art that make sense to no one but her. She still gets her hair and nails done (there’s a little salon on her floor called “A Cut Above”), and when she’s freshly coiffed, she looks like she could say, “Get me the hell out of this place and let’s go to Rockport.” Instead she smiles beatifically and says, “Flibberty jipsum on the mo mo mah mah mah.”

So I leave after every visit with a heaviness that’s different from when I was with her every day. It’s a combination of remorse and relief. I know that I cannot do for her what the staff can. Every morning and every evening took everything that I had, mentally and emotionally. Getting her dressed. Getting her clean. The nightly ritual of lowering all the blinds and turning off lights so that something in her mind would kick in and she’d know it was time for bed. Fighting her over taking a bath, or even getting her to agree to a once-over with a washing mitt. Keeping her from dismantling another appliance. Keeping her out of danger. That’s no longer on my daily to-do list, and I’m grateful. But my own shortcomings were such that we had to move her out of her home. I still feel guilty about this.

I leave feeling such sorrow for her, and everything that’s she’s lost. What’s fair about any of this? I talk to others who are dealing with sick parents. Sometimes you find yourself comparing your situation to another’s. “It’s worse for my dad, because he knows he’s dying.” “It’s worse for my mom, because she’s losing her mind.” The thing is – it’s ALL watching someone deteriorate. It’s ALL confronting mortality and frailty. There’s no comparison. There’s only grief.

I feel so hopeless sometimes. As much as I appreciate my life as it is right now – living in a house I’m happy to come home to, with neighbors who are engaging and funny and kind – it came at a cost. My faith in any sort of a just and concerned Universe/Higher Power/Flying Spaghetti Monster has been shaken to its core. I don’t know what or who I’m praying to, and I’m simply not at the point where I can accept entropy, or nothingness. I can’t make sense of any of this.

So I write. I talk to other people going through similar situations. There’s comfort in the similarities (“Your mother hoards paper towels? MINE DOES TOO!”). I wonder if some become sick because others need perspective, or more contact. I flail about for the right words to describe it all, hoping that in re-reading, it will make sense. I’m re-reading this now; it’s all over the goddamn place. It doesn’t matter. This is life in the shadow of illness sometimes: grasping at reason.