hope

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I Want to Live Well

I’ve been thinking about my career lately, and what do I want to do with it for my last decade of work. (Or what I hope is the last decade of work. I really, REALLY do not want to work full time until I’m 70.) I’ve been a librarian for over 27 years. I’ve worked in an academic library as a cataloger in a tenure track position, a circulation librarian at a public library, helped form an all volunteer library in my town, was an Assistant Director and Director of public libraries (both positions included cataloging, teen services, programming, collection development and more), and now head of a department in a large (for Maine) library. I’ve been on the executive board of my state professional library organization in different capacities over the years, am on the New England professional organization board, have been on committees throughout my state where I’ve had the great fortune of working with school librarians, public librarians of all sorts, teachers and academic librarians. I’ve worked with community members and town government officials and have had the immense privilege to receive the Maine Library Advocate of the Year award a few years ago.

As my term on my state’s professional library organization board comes to an end next month, I had decided to throw my hat in the ring for a different position on the New England board. But after rolling it around in my brain for a few days, I withdrew my nomination with the caveat that at least two people were already running. (It’s good to have choices, no?) My work life has been so stressful these past few months. My library is part of a new consortium and we’ve been migrating to a new automated library system. Not only are we all learning something new, but there are bugs and weirdness and training the patrons to use the new catalog. Oh, and the bugs. Did I mention those? Weekly meetings to try and fix some of the weird things happening in the system and agreeing with other libraries on rules and procedures and language. It’s…fun, honestly. But also headache-inducing. So besides the meetings for the system, there are internal meetings to make sure we know what we’re doing and supervising staff and dealing with patrons and the many, many difficulties some of our patrons are facing in their daily lives. And of course, now that Trump has frozen federal funding, the stress and tension is even worse. That’s my daily work load, but add the professional organization meetings on top of it, and the state committee I’m on, then you start to feel like it’s…a lot.

When I won the Library Advocate of the Year Award, I remember sitting with my friend, Jon, and saying, “Shit. Is this the end?” He is incredibly kind and said I would definitely be up at the podium again one day, but I’m not so sure and I think I’m ok with that. Obviously, librarians do not become librarians to gain attention or kudos. Usually attention is the last thing we want, but gratitude is always appreciated and often we get it on a daily basis from grateful library users. I mean, we need that since typically our paychecks do not reflect how important we seem to be to so many people.

I digress!

I think for my last decade of librarianship, I’d like to stay connected to these professional organizations, maybe be on a committee or two. I’d love to go to a few conferences I’ve never been to, meet new people in my field, learn something new. But I also want to see that next generation of librarian warriors come into the field. I’d love to mentor them if they need me, but also be able to watch them grow and open any doors for them if I’m able. It’s not easy for me to step back. I do love being in the throng of things, knowing so many people in my field, constantly being in awe of them. But I can still admire folks from afar and cheer from the sidelines, right?

Now that my son is going off to college soon, I want to think about my own future that is apart from my career. Hopefully I can take a death doula course this fall. I’d love to take a few workshops on memoir writing. My letters and phone calls to both my local representatives in the Maine House and Senate and my Senators and Rep to the Congress will also continue with the occasional protest of our current administration’s policies. My volunteer work with hospice will most definitely continue. I just started training to walk/jog a marathon. I’m also leaning into what my husband needs and wants for the last years of his life. If I have a decent work/life balance, caregiving might not seem so difficult. Maybe.

And my friends. Oh, man, my friends. Look, I have a very small family now. The family I created along with my sister, niece, great nephews, great niece, stepmom and the few cousins I like, are people whom I love and love having in my life. But my friends? Those people inject so much happiness into me by just being with them! I’d love to have more time with many of them, but our lives are busy and I know that’s not always possible. I hope to carve out a little more time for my lovely, wide variety of friends, too. Although we could go to protests together and that would combine a few of my passions into one delicious day. 🙂 Or travel together! Hell, I want travel to a larger protest with a caravan of my friends!

Everything I mentioned is how I want my life to be. Having some kind of balance between my work and passions and friends and family is a good life, it’s a way to “live well.” (I just read “The Art of Dying Well” by Katy Butler and part of dying well is really living well, too.)

So tell me, what are your plans for the future? Are you in a place in your career where you’re ready to dive deeper or step back? If you’re no longer working, what do you want to do with the rest of your life? What does living well mean to you?

I’d love to hear more about what you want from your life, friends. It’s a tremendously crazy world we are currently in, and our future may not be what we intend (no matter who is President). But I still want to hear what you hope for. I really do.

I’m here to listen.

Hugs to you. ❤

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Moving Forward

I rarely write about good things happening in my life. It’s not that they don’t happen, but they are typically what some would call “small.” For instance, I go to the gym and I consider it successful if I’m able to not only use all the machines I want to, but to slightly increase the weight or reps I do. Or I have a productive day at work with little drama AND I reach 10,000 steps on the same day. Or I get to spend quality time with my little family and it doesn’t end in anyone arguing.

Those are my “good things.” But as of this past week, I feel like my bucket runneth over! After over a year of not working and having both mental and physical tests conducted and paperwork filled out by the truckload, my husband was granted disability by the Social Security Administration due to his declining health. It’s a weird thing to get “congratulations” from people about it, yet it was the perfect thing to say! I might not need to sell my blood plasma anymore. Wal might not need to go to the food bank each week. I say “might” because bills still need to be paid and budgets worked out, but all in all we’ll be in a better place than we’ve been. Well…financially it’ll be a better place. And honestly, mentally my husband is in a MUCH better place. He’s feeling like he’s contributing to the family and not being a burden. It’s not that he was a burden but…it’s hard. There are days I come home and I just want to burn it down because there are dishes in the sink, poop in the cat box, mail in the mailbox and nothing for dinner. I’m tired and sometimes cranky, but I try to shut it down and just putter around the house and clean up the messes. Typically I know that if that’s what I’m looking at when I come home, then Wal had a bad day—either a lot of pain due to diabetes and neuropathy, or little energy because his heart is not pumping the way it should, or he’s horribly depressed because of his health situation. So I dig deep to find that empathy inside me and tend to whatever he might need.

As I said in my last post, my son will be attending a local university, the University of Maine in Orono. We made his confirmation and housing deposit on the day we found out about Wally’s disability. It’s time to get the kid ready to fly the coop and get his parents ready to live in an empty nest.

With two of our major life-changing events finally beginning, I feel like I am able work on me again. I really, really want to run or walk a marathon. I don’t think running one is really in the cards for me, so I’m starting to research both the walk/run method, and the power walking method. I want a physical goal to train for again. I want to feel particularly strong and proud of myself again. I mean…I’d love to lose 10 pounds in there, too, but Jesus, that also doesn’t seem to be in the cards! Being physically fit and healthy is what the goal should really be, right?

Sure. Yup. Right.

Anywho! I went out today and took a 4-mile walk with one little bout of running—only because it was snowing so hard into my face that it was painful. Although it was snowing, then blowing, then raining and finally ending with sleeting, I managed to mostly enjoy my walk. No dogs came out to try and attack me (that was two weeks ago), very few cars, just me and a bunch of birds that sounded particularly pissed off about the snow. I might be projecting, but they really did sound angry.

I got home, my hair partially frozen, my coat, hat, mittens and hoodie all soaked. And I felt…fantastic. Proud. Happy.

I’m enjoying days like this since they seem to be few and far between. Who knows, maybe there’ll be more days like this in the future.

I hope you’ve enjoyed your day, friends. With everything the world is facing right now, let’s keep putting one foot in front of the other, ok? ❤

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Be Patient

My husband applied for disability in March of 2024. Between his congestive heart failure and diabetes, he is no longer able to work. Throw in depression, and he’s barely surviving. As am I.

But, tomorrow, NINE MONTHS after he applied for said disability, he will finally have the physical required by Social Security to determine if he is, in fact, eligible for disability payments. That he has paid in for. Let’s be clear about that. He has been paying into social security since he started working as a teen. But the SS Administration still has to determine if he’s sick enough–not his doctors who actually encouraged him to do this two years ago–but a family nurse practitioner the government has hired.

Do I have hope that he’ll finally be approved? Of course, but very very little. It’s almost a given that you get denied disability on the first run. My brother was denied his first time. Why? No fucking clue. His heart no longer worked. Period. But was still denied. So yeah, although there’s a smidgen of hope that Wal will get disability soon, we’re still going through this process expecting to be denied then starting the whole damn process over again.

You know, I looked at my blog post from a year ago and read how I had hoped Wal wouldn’t have to stop working that year. Little did I know that he would be unable to work just over a month after I wrote that post. I wonder what I’ll know a year from now. Will I still be selling my blood plasma? Will Wal still go to the food bank every Tuesday? Will his health be about the same or worse?

I’m almost glad I don’t have a crystal ball.

Let’s just keep chugging along, shall we? Let’s just pretend that it’ll all work out.

Or I guess we can hope, right? Sometimes I’m not sure I know the difference between hoping and pretending, but tonight….

Tonight, we’ll call it hope.

❤

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End Times

Thursday morning I awoke with an anxiety attack. I don’t know what I had been dreaming, but my first thought was about my son’s ankles and the fact that they’ve been hurting him for a few weeks, shortly after he started playing football. That one thought spiraled into worries about new shoes and getting him a new doctor and worrying about the health of our current doctor and how do I pay for my last medical bill and I hope the food bank has more produce next week because this week was a bust and we really need more vegetables in the house and I need to stop thinking, stop thinking, stop thinking.

Yeah.

Hello, 4:30am.

So I got up, drank coffee, ate half a banana, and took a 4 mile walk while listening to a gloriously smutty romance novel. (Unfortunately Yours by Tessa Bailey–Anything by Bailey is fun and often smutty. Delicious!) My hip was screaming by the end of the walk, but at least I wasn’t concerned about money. The time outside and moving my body was enough to clear my head and make a plan to at least have my son’s ankles wrapped before that day’s football practice. I just refused to worry about the other stuff the rest of the morning. It was just too much to think about. It was just too, too much.

The thing is…life is not horrible. It’s hard for sure. It’s a struggle. It’s scary not knowing…anything really. The political climate of this country does not help matters. My son, my beautiful child, is a political science/government/history junkie and so we tend to read, listen and watch more news than ever before. But I have now had to stop, because I can’t stop freaking the fuck out.

I’m ashamed to say that when I heard there had been an assassination attempt on former President Trump, I was disappointed to hear that it was only an attempt. The anger I have at Trump for installing so many jackasses to the Supreme Court and his party’s disgusting Project 2025 plan, made me hope for his death. And I’m not happy that I had that reaction. There is no place for political violence.

But I have to be honest in how I feel. We’re living in a country where many women no longer have a right to choose what they do to their own bodies, and where librarians and teachers are harassed and called “groomers” for providing access to books that represent children like mine.

This isn’t the same country I was born and raised in. It’s turning into a hateful place, where people no longer feel safe to speak how they feel about a political candidate unless they are in a group of like-minded individuals. And I am speaking about both Republicans and Democrats. As a liberal Democrat living in a small conservative town, I rarely feel comfortable expressing how I feel here. When you see Trump signs or F*ck Biden signs on just about every road, how else should I feel? But I also know of librarians that are Republicans that will not say a word about politics for fear of their colleagues damning them for their views.

You know, I rarely talk about politics publicly. I work in a public library so I keep my mouth shut while at work (except with some colleagues), and at home we do talk about politics but sometimes it’s just too exhausting. It is incredibly difficult to live with someone who disagrees with you politically. So most days we keep it to a minimum. That’s how we’ve remained married for nearly 27 years. Yet our son, who knows more about American history than we do, and is thoughtful and knowledgeable about our current political system, will bring facts and a sense of calm to our family discussions. (Facts and calm to political discussions. Isn’t that something?) I see my son and much of his generation as a beacon of hope. When they are of age to vote and run for office, I hope we will begin to see a change in our world for the better.

And hope is what we need right now. All of us. For a variety of reasons.

You know, I sent this photo to a friend recently who is no longer speaking to me. I’m not sure why they’re not speaking to me, but it may have nothing to do with me. It was a message to let them know that I have hope that our friendship will remain and hope that our lives will get better, but also just to say that I’m still here.

And I am. I’m here. And so are you. And I’m so happy and thankful for that. So let’s get through another night together. I know we can make it through. ❤

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Until Your Love Runs Out

“With gratitude, optimism is sustainable.”–Michael J. Fox

I heard Fox say that once in a recent interview. It takes effort for his body not to shake or move due to Parkinson’s Disease, yet he’s still grateful for and optimistic about his life. I immediately found a scrap of paper and wrote this quote down because I knew I’d need it at some point. And now here I am, trying my best to embrace those words.

Your comments, messages, emails, texts and phone calls in response to my last post, was the best explosion of love I have felt in quite some time. I am not only grateful for y’all, but finding others that have been or are currently in the same situation, lightened my stress by just a bit. Thank you. So much!

Because of my blog post, my husband and I had some honest conversations, including his daily fears and what the future will bring. We added to our vision board with our own hopes and also YOUR words of encouragement.

When I asked my son what he wanted on the board, he said to win the Calvin Coolidge Scholarship. This is the one he’s been working really hard on–reading Coolidge’s autobiography, writing 3 essays and 3 short answer questions. I helped him with his resume and he got the two letters of recommendation he needed. The deadline is Thursday, so much of his life will be consumed by this for the next few days. He said, “You know, Mom, I really doubt I’ll get it, but I’m really proud of myself for trying.” I’m so damn proud of him, too. He set a goal and he’s kicking ass trying to achieve it. ❤

We’re feeling some hope this weekend. I was able to buy groceries yesterday and filled the house with healthy foods and now I’m cooking up a storm. I paid most of our bills and with a bit of juggling, should be able to pay the others around their due dates. (I know many of you know this juggling I speak of. We’re basically fucking financial experts, aren’t we?) Today my husband looked at bars for the shower and toilets that are higher than what we have. With help from one of my colleagues, I now have a short list of attorneys we may want to talk to soon about the process of applying for disability, but he’s not at that point quite yet. He has to stop working before he’s even able to apply. I really, really hope that isn’t this year.

But if it is, then we’ll deal with it. Because that’s what we do and what you’d do, too.

For today, though, we’re going to move forward and hope we can continue to keep putting one foot in front of the other. We’re going to listen to this positive potato. (My son gave this to me yesterday as my late Christmas present. I LOVE IT!)

So let’s do our thing, friends. I believe in you, just as much as you believe in me. Let’s keep chugging along until the love runs out.

Hugs for all!

Thank you, One Republic, for letting me borrow and edit your lyrics for my blog post title.

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Hold On Hope

Habits are hard to break, aren’t they? I’ve bitten my nails for my whole life and I’ve finally stopped doing that…mostly. But now I tear at my nails instead. It’s marginally better? I drink coffee each morning before I do much of anything else. It’s not really the best habit because I use sugar and creamer. I’ve cut my sugar in half, but I can’t seem to get any further than that. Honestly, it’s a habit I don’t want to break.

What do you do when your habits seriously hurt your health? Smoking, drinking excessively, eating fatty or sugary foods–not to mention addiction to illegal drugs or pain medication–are all activities many of us participate in, but when your health is deteriorating due to these habits, how do you stop?

What if you are the partner, friend or child of the person with these harmful habits? How do you help the person? When is the time you step back…or turn your back?

In August of last year, I wrote this: “But…shouldn’t there be a time when we finally say, ‘I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.'”

I’ve discovered that there is indeed a time when I will say these sentences and that time is now.

After a recent hospital stay for my husband due to a medication failure, a diagnosis of congestive heart failure and a disastrous and degrading (to me) doctor’s appointment, I am stepping back. It is now up to my husband to take control of his life. He knows all of this now. We’ve had a “come to Jesus” meeting as my old boss, Bill, used to say. I won’t attend any more of his appointments unless he is physically unable to drive. When he asked if I would go to an appointment if he asked me specifically to go, I told him I’d have to answer that later. Right now, the answer is “no.” I have a list of his medications, but it’ll be up to him to let me know if anything changes. When he asked me yesterday if he should pick up canned hash to have for breakfast the next day, I told him I wasn’t answering those questions anymore. He could make that decision, that choice. And he did.

Does all of this seem too personal to put out into the universe? It is. It’s also really difficult. I know I have at least one friend who understands everything I’m feeling right now, and maybe there are more people out there who get it, too. You’re not alone.

Marriage is hard. Relationships are hard. Parenting is hard. Co-parenting is even harder. Watching someone hurt themselves when you know it affects more than just themselves, is rage-inducing.

Over the past few weeks, I’ve found myself falling back into that bad habit of emotional eating. I’ve always done that when I’m angry, and these past 2 weeks certainly proved that. Fortunately, I’ve been able to attempt running once more, and that has helped my moods tremendously. I wish it could help everyone, but at least I’m able to find patience as the result of my exercise and can listen to my son and husband when they need me. At this point I’m not sure I can do much else.

I know for a fact that some people will read this and think I’m heartless or selfish and should do more to support my partner. “You’ve been married for 25 years! You don’t just sit back while their health is in jeopardy!” But what if your own health, albeit mental health, is in jeopardy? What about your child’s? The old man can do this. He is completely capable of making good choices. I don’t care if you think I’m heartless or selfish. I know I’m not. I love my husband. I will until I die. I am still here. But right now, he is the only one who can help himself. Will I give him a pat on the back when he does well? Absolutely! But will I criticize him when he doesn’t? Nope. I’ll do my damnedest to just nod my head and say “ok.”

These changes will be damn difficult for everyone in our household. I will hope for the best, but expect the worst, which is my usual M.O. 😉 Now enjoy this song about trying to find some hope in a messy situation. Hugs to you all.

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Talk to Someone

Five months after my brother died and just weeks after I moved my mother in with my family, I decided to talk to a counselor–the first time in over 12 years. But just trying to work out the logistics to get to that appointment stressed me out so much that I remember screaming in my car on the way there. I kept saying “I am never going to fucking do this again!” I only went to the counselor twice because she was absolutely horrible when it came to grief. At one point I was crying in her office, telling her how much I missed Phil, and what does she say? “He’s still with you, Holly.”

Really?!? Can I sit and talk to him and he talks back? Is he going to tell me a joke and give me advice on raising my son? Will he still be at my son’s high school graduation that he tried so fucking hard to live for? No, you goddamned bitch, HE’S. NOT. HERE.

Of course, me being the person I was (not sure I’m still that person), I just nodded and whispered, “I know.” Inside, though, I immediately deflated. (The anger came later.) I knew she would not be able to help me. On a side note, she was extremely helpful in helping with some issues with my mom and her jackass boyfriend. So the counselor was not useless at least.

Since those counseling sessions, I’ve only pondered finding someone else to talk to. After Dad’s death and especially after Mom’s, I thought, “Ok. You might want to talk with someone, Holly. This is a lot of shit to deal with.” I was so exhausted by fucking everything that I passed out momentarily in my kitchen after my mother’s celebration of life, with my poor son freaking out and calling his father who was out of state at the time. But I still didn’t ask for help. I barely even took time off of work. Then my husband nearly died, and once he came home I encouraged HIM to go to counseling. (When you’re in a coma for a while, there are many gaps in memory and events and it’s difficult for your brain to fill that time in.) Instead, I became HIS counselor and tried to help him sort out what happened to him and what was happening in my world at that time. But I didn’t go and talk to anyone then either. I started drinking most nights–just one drink–but I felt like I *needed* it, along with my anti-depressant. Hell, I often swallowed my pill with a swig of wine! (And no, this is not advisable.) Then, of course, the pandemic hit and didn’t everyone need a therapist at that point? I looked into Betterhelp.org, but they wanted to match me with a male counselor who, in my mind looked like either a serial killer or a child molester.

Yup. He looked like Kevin Spacey.

So, no. I decided to not go that route. Instead I read books like “Group: How One Therapist and a Circle of Strangers Saved My Life” by Christie Tate and listened to Mayim Bialik’s Breakdown, a podcast about mental health. And, of course, I kept running.

But we all know how that last thing turned out, right? Yeah. So then I started to worry about what I was eating and without running would I start binging or restricting food? I mentioned in my last post that I reached out to a dietician, but after thinking about it, I knew I needed more help than that. So I did a little search on counselors in the area that specialized in eating disorders. Then lo and behold, one of my dear friends from my past was a counselor for this very thing. When I saw her name, I immediately called and left a message. I knew she couldn’t be my counselor, but I trust her and knew she’d have someone in mind.

Then St. Patrick’s Day came–the anniversary of Dad’s death. And then I read a book that reminded me of my brother and I sobbed while eating lunch at work. Then I found one of my mother’s tote bags and it still smelled like her. And then…and then…and then…

You, readers, have been my sounding board for years now and although it certainly helps me to hear advice and anecdotes and to feel the love you’ve shared and showed me, I know I need to do something else, too. So when I talked to my friend, I asked her to help me find someone that could help me with MANY problems/issues/dilemmas, or in other words, life. I’ve only corresponded with this new counselor once, just so she has an idea of what I want to work on, but I won’t get to actually talk or meet with her until May. But, you know, once I had a name and heard her voice and read her email, it gave me this little high. Kind of like when you’re about to go on a first date and you have butterflies and possibly high expectations (I am trying to squash those) but more than anything, you’re filled with hope. This person you’re about to meet could possibly change your life for the better. And in this case, maybe help ME change MY life for the better.

We’ll see. Until then, I will carry on. Because that’s what I do. Because that’s what we all do, right? I can’t say I “keep calm and carry on” because my bursts of anger refute that phrase, but maybe you do? Whether you’re calm and serene, or pissy like me, let’s just keep going, ok?

LET’S. KEEP. GOING.

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Bionics!

I’m not gonna lie. I am sometimes grateful for an excuse NOT to run. But this might be overdoing it.

That thing that looks like a parasite is a plate with what seems to be 9 screws. It’s keeping my arm together.

It’s been two weeks since this operation and 18 days since the break. The doctor told me today that it was just a mess inside there. More breakage then they thought, but things look good now. Still not allowed to do much but I can keep the sling off more. Still can’t use my right hand to start the car, wipe my ass, or do much, but if I plant my body just right, I can type with both hands now! Yippee!! It’s the little things.

My new scar.

I think my “outsides” look just as odd as my insides. I mistakenly showed a friend my arm yesterday and her knees nearly buckled. Today, though, I wore a tank top because I had to see the doctor, so no sense wearing too much I would need to take off. That just takes too much time nowadays! I found people sneaking glances at the scar, and a sweet little girl asking her mom what happened to me, and why not? I’m her librarian and I didn’t look like that a few weeks ago, so what the heck? I felt a little freakish at times today, but I’ve always told my son to fly his freak flag high, so why shouldn’t I?

I was pretty despondent yesterday–just everything taking too long to do, arm hurting, brain still reeling and making dumb mistakes at work. But today I have a little more hope. I still won’t be able to do a lot on my upcoming vacation–no major hikes and even no swimming (can only get the scar wet with water and soap)–and I still won’t be able to wear a regular bra for some time or wash my hair with two hands, but there’s hope that physical therapy MAY begin in three weeks. I know it will be tough and frustrating, but right now, I am SO ready to get to work.

So here’s to a good fight and a future where bionics are the norm!

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The Good, The Bad and the Exhausted

It’s been a rough few months for my family. My mother’s health and mind are declining faster than I’m able to cope with. My father’s memory is fading, too. My brother was in the hospital for a month and I ended up in the hospital for four days for pancreatitis. We were all feeling helpless and at times, hopeless.

But within those two months of ickiness, there was Mother’s Day, my dad’s birthday, and my birthday. My son finished fourth grade, his baseball season ended (hopefully his last season ever) and he grew another half inch.  I lost 5 pounds (although I don’t recommend pancreatitis as a way to lose weight). My husband, son and I all read a bunch of great books during this time, had several amazing sushi dinners at our favorite restaurantsocks, Ichiban, and we finally saw the movie, Wonder Woman.

When the shit started to hit the fan in May, I was finally running more after this long winter. I was up to 8 mile runs on Sundays. It was a great stress reliever, but it was also nice to have mileage goals in mind again. I had hoped to be at 12 miles by now, but my body had other plans for me. So this morning, after my first full cup of coffee in a month, I put on my favorite socks and went for my first run in three weeks.

I’m not gonna lie. It was really difficult. The first half wasn’t bad, but I started to lose energy just after mile one. Had to take walking breaks on the way back and finished the 5K with nothing left in me. Just thinking about the power of my sock capes flying behind me was the only thing that pushed me through that last quarter mile. The heat and humidity were a factor, too, I’m sure.  I nearly passed out twice after I got home (saw spots, light headed) and my energy didn’t really return until the evening.

I don’t know about you, but I’m not very good at treating myself well. But I really need to. I need to learn to be good to myself. I need to learn to let things go, to not stress over situations that I cannot control right now, or possibly ever. I need to listen to my body. I need to admit that it’s ok I don’t run as much as I want to and it’s ok I can’t eat whatever I want right now. It’s sucky, but it’s really ok.

Now that summer has finally arrived here in Maine, I’m trying to have a more positive outlook on at least the next few months. If I can’t run as much, I’m hoping to take more walks in the sunshine and try a little more weight lifting. If I can’t eat ice cream every day (which is a crime), I’ll try to find yummy but healthier options. I’ll try to spend more time with all of my family, bring out photos to remind all of us of good times in the past and continue to plan good times for our future.

I will try to live in the moment. I will try to not wish away the weeks, wanting the painful bits to hurry up then go away. I know the pain will pass and I can get to the other side eventually. I just need to live through it, learn through it and move on. As my dad always says, “You can’t live more than one day at a time, right?”

Right.

So here’s to you and me, living in the moment during this summer of hope. Let the good times roll!

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Answers

For months now, I’ve been waiting for a doctor to say the word, “dementia.” My siblings and I have known that is what is causing our mom to forget so many things and causing her to repeat herself time and time again. We knew dementia was the only explanation for why there were so many incidents with Mom over the past few years. But no one could or would confirm our beliefs.

Until yesterday.

But have you ever expected an answer to a question, and when you received that expected answer it gave you no relief? It just confirmed your nightmare?

Yeah. That’s how this feels, too.

When the doctor used the words “vascular dementia,” it was a bit of a relief, only because we finally had a diagnosis and it confirmed that my siblings and I were not insane (well…not for this reason, anyway). It’s also a slight comfort to be able to say to someone, “Look, my mom has dementia so she might not remember you after today.” It gives us a word to use to explain our mom’s behavior, a word we can use with certainty.

But today, after using the word a few times and having it flit around in my brain, it just makes me so fucking sad. This diagnosis means that my mother will never, ever get better. She will never, ever remember more than she does at this moment.  If you were to meet her today and again tomorrow and again next month, she would be meeting you for the first time.

Every.single.time.

Our only hope is that between medication and exercising the hell out of her brain, she will slow down the progression of this disease. But it’s all up to her now. This medication is not a magic pill by any means. If Mom doesn’t work her brain by doing jigsaw puzzles and reading and word jumbles, then even that pill can’t slow things down much. But there are physical issues, too. If she stopped smoking, she could slow the disease down. If she can control her diabetes better through nutrition, she can slow this down. If she can keep her blood pressure and cholesterol at good levels, she can maintain her memory as it is now. It’s completely doable….but must feel daunting.

And then the neurologist used the word “Alzheimer’s.” The only way to truly know if someone has Alzheimer’s disease, is to place a slice of their brain under a microscope. Obviously that isn’t going to happen, but with Mom’s family history of dementia and Alzheimer’s, the doctor felt fairly confident that her memory loss was also a part of Alzheimer’s disease.

skull

You know, that word felt like a slap in the face. I don’t think I fully expected to hear the word, and although it didn’t change the diagnosis at all, it still stung. My mother’s initial reaction was, “Well…at least I have life insurance.” I reassured her that this wasn’t a death sentence (yet), but now after thinking about it for a day, I completely understand her reaction. It *does* feel like a death sentence. We watched one of my grandmothers die from Alzheimer’s and it was absolutely horrific. She could no longer talk by the end and was literally a shell of the woman she once was. And maybe that was what Mom was thinking about.

But the doctor said to my mother, “Don’t just give up on life because what I told you.” The doctor often sees patients just shrug and say, “Well, that’s that. I’m doomed,” which is basically what Mom’s initial reaction said, too. The doctor said that if she works hard and kicks and screams, she can at least maintain her cognitive health as it is now.

Mom’s posture changed when the doctor said this last bit to her. Mom said that she could do this. She’ll work hard. And if there is one thing just about anyone who knows my mother will tell you, is that she is a damn hard worker. But…usually that hard work has been for other people. I can only hope that through our efforts to encourage her by playing card games and doing puzzles with her, Mom will step up and fight for the memories she has left.

I’ll be honest and say that I don’t have much hope. I know my mother and I know she won’t quit smoking. I think she’ll take her medication and I think she will try to do some mental exercising, but I think part of her has given up.

I hope I’m wrong. I hope Mom’s mind stays on an even keel for a while and I get to have her for a while longer. I hope she works her brain so much she kicks my butt at UNO. She’s been known to surprise all of us a time or two, particularly when it comes to her health. And now I’m hoping for at least one more surprise from her.

Here’s to hoping.

And hard work.

And a cure.