It has been so long since I have written — here, anyway. More on that in a minute.
This is a quickie, to just touch base and let you know I’m not gone. But 2021 was kind of a shitshow for me, and my new normal is kind of stinky as well.
In June, my dad died. He had suffered from Alzheimer’s for more than a decade, so it was time. The end wasn’t pretty (I’ll never forget the sound of the “death rattle” as the hospice nurse called it). But it’s over. He is no longer disintegrating piece by piece, so we no longer have the internal war of wishing him peace, but not wanting him gone. I have a tribute post in the works, and will hopefully get to that next month.
Last spring, HWSNBN (my husband who abhors social media) finally decided to see someone about some hip pain he was experiencing. The chiropractor helped for awhile. Then he saw an orthopedist, who suspected an arthritic hip from all his years of long distance running. PT was prescribed, but it got worse. During the Boston trip (read that post here), he calmly shared with me that he couldn’t feel his right leg. It “woke up”, but we were shaken.’
He tried a steroidal injection, and that helped for a bit. We managed a Vegas trip in July, and had a ball. But shortly after we returned, the pain was back, and worse. He continued to be unable to run, which was just killing him. The orthopedist was alarmed, and decided it was tie to see a neurologist.
What followed were rounds of tests — blood work, MRIs, EMGs, manual assessments and more. And then they were repeated. On October 1st, we learned that after excluding everything else, they determined he has ALS.
So yeah. Shit.
Since then we have been busy coming to terms with what that means, now and in the future. What future? Who knows. Could be years. Could be, well, not. So far his breathing, speech nd swallowing remain unaffected, an for that we are grateful. But in the just over 3 months since he was diagnosed he has gone from walking painfully to using a walker and now starting to rely on a wheelchair. His right leg is almost useless, and his left isn’t very cooperative either. His hands and arms are weaker, but we don’t know if that’s the disease or the result of overuse from gripping the walker.
Date nights are gone, replaced by home stretching sessions and the never-ending struggle to keep him comfortable. To that end, a lift-assist recliner, swivel tv tray with handle and sleep number adjustable bed are all entering the home in the next week.
Friends, family and coworkers have been phenomenally supportive. “How can I help?” is the phrase I hear mot these days (well, maybe “Donni can I get some help?” is uttered more frequently). From putting air in my tires to bringing meals, to moving things into the attic and running errands, people are amazing. Truly.
I mentioned earlier that I have been writing, just not here. We have a Caring Bridge site that we sue t keep folks updated (check it out here). It’s cathartic for me as well — although, as Singer Girl reminded me, it’s not a therapy session. So I tend to hold back on the feelings there. I will likely be less inhibited here.
But not every future blog post will be about being a CALS to my PALS (caretaker of one with ALS, and person with ALS. All the cool, exhausted people use acronyms). I hope to post tomorrow about our fabulous trip to Sicily to spend Christmas with Sailor Boy. Lots of photos, as usual, so I’ll get at least 3 blog posts about that.
Thanks for listening. I know it’s a downer, but life isn’t all vacations and fashion. Nowadays, I’m thrilled with any me time and clean sweats (is it wrong that I found my filling at the dentist this week a relaxing respite of me time?).
My dad’s Alzheimer’s diagnosis wasn’t a surprise, as we had seen the signs for a long time. My mom had been slowly readjusting their lives to fit his needs, and, of course, as the disease progressed, so did the pace of the adjusting.
My daughter has watched all these changes, in both my parents, and has used her music to work through it. Today, she put out her first single: Grandpa’s Song.
It’s about my mom, telling my dad about how she will always be there for him. It’s about remembering their past, with a tentative eye on the future. It’s about how this wretched disease has stolen so very much from them.
Singer Girl, whose true name is Frankie Torres, has been honing her craft for more than 12 years. From singing in clubs, on stages, in bars and in huge arenas, she has waited patiently for the day she can share her OWN music with the world. Today she started seeing that dream become a reality.
Grandpa’s Song is the first of three original songs she will release this year. They are all three incredibly personal, and reference her experiences in some way. This song hits the closest to home for me, of course, because it is about my dad and mom. But the other two touch me in a completely different way. When I hear them, I can’t see the little girl who idolized Kelly Clarkson and wanted to be her one day. Now I see the woman who she has become, one who is a star in her own right.
Two weeks ago we thought we were losing my dad. Alzheimer’s patients often lose the ability to swallow, aspirate, and get pneumonia. That’s what ultimately kills many of them, and dad was struggling. He aspirated. He got sick.
My brother and his wife flew out from Washington — just in case. We all had special moments with him. I played him the song.
Dad hasn’t spoken much in years. But when he heard the song — HIS song — he hummed along. The rest of us wept.
Please take a listen on whichever streaming platform you prefer I’ll list a few links below. If you like what you hear, say so! Like/share/download/follow her on them, and on her Facebook page and on Instagram at frankie_torres3.
Thanks for listening. Hug your parents, your grandparents, and your kids. They all deserve a song.
iTunes: Grandpa’s Song – Single
It seems the world is slowly waking from its COVID-coma, taking tentative steps into the light. I am not sure if it’s wholly a good thing, but I will be totally honest: I do like having more freedom.
We have been to restaurants — one dinner outside, one inside. We went to a brewery. We even had friends over for an INDOOR dinner party.
I got my nails done, and then, the following week, my hair.
I’ve had in person meetings, not just Zoom ones.
As a rule, we are a family of mask wearers. I hate going into a store or office and seeing people with bare faces. I have chosen to not continue patronizing a few places when I have seen the people working there without masks, and seeing the clientele without them. I have never told someone to put a mask on, but I have definitely felt aggression towards me from those who don’t wear them. I don’t get it.
But then, we have been guilty ourselves of breaking some COVID rules. We sadly attended a funeral wake last week, and not only did we not wear masks, we even hugged some people.
My daughter is socializing again, mostly with the same people. But I did allow her to go camping with these friends and several other new people. I felt massive guilt about it. I know that means I should have said no. That’s what I tell my kids: if you feel wrong about doing something, you shouldn’t do it. But I did.
Today I got to do something I haven’t done since February: see my Dad. In case you didn’t know, Dad has Alzheimer’s and lives in a care facility. His incredible home locked that shit down at the first sign of trouble — earlier than most — and has not had a single COVID case. Great in some ways, dreadful in others. Residents lived in their rooms, away from other residents and all group activities, for 4 months. Last week, they satrted allowing socially-distanced meetings: masks n, no touching, temperarure checks and hand sanitizer for all.
Because of her camping trip, Singer Girl did not come. Too risky.
But Mom and I did.
He looked the same — which isn’t great, but not worse. He didn’t fuss with his mask, but frankly I don’t think he was too cognizant of it.
I’m so glad we got to go — evn if it was tough hearing Mom apologize to Dad for not coming sooner, and trying to explain about this wretched virus.
We will definitely hop on the old Sign Up Genius to schedule another visit. As we left I told mom That when things shut down In March I wasn’t sure if I’d ever see him again. She agreed, and commented it was good that we got another memory. He even smiled and laughed for us at the end.
And that is a gift.
Recently I visited my dad in his memory care facility. Dad has been at his current home for a while. He is getting less and less communicative and even responsive. At this last visit, neither of us got much comfort out of face to face time, so I stood behind him, gently massaging his back and neck. I remembered when my brother and I were little, and giving dad karate chop massages was a regular art of our afer dinner shenanigans. This felt different, of course, but you cling to associations.
Nearby, a man was visiting a woman, his wife, I later learned. I hadn’t seen either of them before, and it quickly became clear that she was a very new resident. He was worried about her. You could tell he had been her caretaker and felt somewhat adrift.
He had brought her a toy, he told the attendant. He thought she might like it. It was a stuffed animal she’d always had on their bed. The attendant smiled kindly, admired it, and gently advised he put her name on it.
He hadn’t yet learned that objects grow legs in an Alzheimer’s ward, as everything looks both familiar and foreign to the residents.
He mentioned that she needed a bath. He said “I don’t know if she’ll mention it.”
The wife sat quietly, perhaps asleep. She clearly would never again remind someone of her hygiene needs. She was limp — except for the pillows the attendant had used to prop her up. Said she seemed to like that.
The attendant said his wife had eaten a good breakfast. That seemed to take one worry line out of his forehead.
Until he realized, and my heart wrenched with his as he quietly said, “The last thing we did together was eat supper.”
Becasue even though she was still alive, their relationship, as he knew it, died the morning he moved her to the memory care unit. I saw this as my mom must have, and remembered the pain in her voice, and even in her posture. The guilt, the certain surety that she had failed him as a wife. I knew he felt this way now.
“I don’t know what to bring for her,” he said.
“Just a little bit at a time,” the attendant softly responded.
“Maybe I’ll put some butterflies up on her wall,” he said, to himself mostly, all the while patting her hair, adjusting her blanket, caressing her hand.
From where I stood, one wheelchair over but trying to give them privac, I saw an older couple, a man bereft and a woman sliding into her own end, one forgotten memory at a time.
But from his vantage point he saw the young woman he had romanced, who had made his home nice, whom he now wanted to repay in kind.
I cried in the parking lot when I left, thinking of my parents. Of me and my husband. Of my daughter’s face as she asks me if she, too, will someday be like Grandpa. I, of course, can’t answer her.
I can only hope she always has someone who wants to put butterflies on her wall.
80s Hair Metal
Making people laugh
Hearing babies laugh
People with differing opinions listening to each other, respecting those differences and learning from them
The way my son now wants to go to theater with me
The way he loves his girlfriend
The way my daughter loves her boyfriend
Scolding my husband and my BFF for being too silly together (the time they almost knocked the tree over, though…)
Getting Christmas cards
First flowers blooming in spring
My new car
The full moon
When my nail polish stays on
People’s reactions when I hand them puppies at a puppy party
Books and the people who read them (shout out to my book club!)
Food and the people who eat it (shout out to my Gourmet Club)
Volunteering and the people who make it happen (shout out to my Senior Party staff!)
Dogs and the people who save them (shout out to Secondhand Hounds)
My husband’s commitment to French lessons with me, even though he hates it
Taking off my bra at the end of the day
Wine with my girlfriends
That I forgot I’d already said cheese, which kinda shows my true feelings
The smell of asphalt after a rain
Historical dramas on BBC
Seeing a formerly traumatized dog become what it was meant to be, and finding the perfect forever home
The sound of a champagne cork
Crossing stuff off my list
Making a new list
The way my daughter teaches me things
The way my dad still says I love you, even though he isn’t sure who I am #fuckAlzheimers
That my mom still wants to help me every day in every way
That I am still in contact with friends made when I was a toddler (thank you Facebook)
That people who I used to fear/be intimidated by/look up to/have massive crushes on in high school have become my friends (social media plus time: the great equalizers)
Discovering new links on Ancestry.com
Not caring if people think I am weird
Being recognized for my accomplishments
Hair dye (shout out to Chelsea at Spalon Montage)
My Vegas group (shout out to the Unicorn Poop Squad)
Mom and Pop stores
People who don’t untag themselves from photos
That my son asks me for advice — even when the subject matter makes my butt cheeks clench
40 degrees in February
Watching the parents of Olympic athletes realize it was all worth it
Sunsets over the water with a glass of Chardonnay
A clean house
All the laundry done
Cooking for my family
Having them all there to eat it
Having a long, hot roll … at craps
Free champagne in Vegas!
Someone else planning everything, rather than asking me what I want to do
Big fat scary pitbulls that are really lapdogs who want to give kisses and receive pets
My dog’s patience as a foster-trainer
The “unfollow this post” button on Facebook
Having random people in cities I am visiting decide I am the bomb and follow me on instagram
Being a fly on the wall during fun school activities
The pile of shoes near the door when there are kids in the house
Watching Singer Girl do her thing
The look on a family’s face when they take home a newly adopted, once-my-foster dog
That my kids both bring soup to their significant others when theya re sick
My kids righteaous indigantion over the mistreatment of others
Doing new things
That my husband remembered that one of my dreams has been to dance on the Champs Elysees on my birthday — so is taking me there for my 50th
Sailor Boy wanting to be the party host (gets it from his mama, ya know)
Everyone’s excitement about my annual Halloween party
My friends’ disappointment when I can’t host Dec 23rd
Dressing up for any and all holidays and events, whether it means black tie or bunny ears
Knowing that my kids have amazing lives in front of them
Knowing that I have an amazing life in front of me
And did I mention cheese?
Enjoy all that you love this Valentine’s Day!
Not a particularly amusing day — and while productive in some ways, not so much in others!
My hairdresser par excellence, Chelsea, helped me pick a pair of cool readers today. Is that an oxymoron? “Cool readers?” I choose to think I’m just hip — and I don’t mean of the broken variety. As we always do, we discussed my next color, and how we will go about achieving it. I like my bright blue Muppet look for sure, but I am thinking something more sophisticated for my trip to Paris (mais oui!) in April. Gonna go berry wine. She’s intrigued…
Hit the library, where I checked out far too many books to read on this schedule, but oh well. I’m reading a great one right now: Goodbye Vitamin, by Rachel Khong. It’s a sad, funny novel about a gal who moves back home on mom’s request — just for a year — as dad has been diagnosed with Alzheimer’s. My dad has Alzheimer’s and so many of the stories she tells remind me of when mine started declining. My Dad always got busted for stealing silverware. We’d be out to brunch and he’d be slipping a knife up his sleeve — and he usually had multiple watches on under that sleeve. Mom was forever bringing me ziploc baggies filled with stuff he had taken from my house. Anyway: so yeah, it’s a horrid disease, but if you don’t laugh, you’ll cry. Which does seem to be how I make it through my days no matter what.
Next it was the CAR WASH. Why the caps? You must not be from a winter state. We just finished three days of melt after two weeks of temps so cold my nipples could cut glass. So that first car wash is like taking off your bra at the end of the day. It shouldn’t thrill you to the tips of your toes, but it does. For me, the car wash was also a quiet place. I read for about 10 minutes, while someone else was cleaning. That is a bit of heaven right there, my friend.
HWSNBN does not feel the same about car washes. See, he is wicked afraid of clowns (not teasing him; we all have our things. For me? Escalators. No I am not kidding. Hate the things. And my kids know it: they love to walk backwards on them, pretend to trip, whatever. They joke that someday they are gonna fill escalators with clowns and wet themselves watching their parents try to climb over each other to see who can get out of the way first. They are hilarious, my offspring.). Anyway: back to car washes and clowns. Yes, there is a connection: HWSNBN feels that car washes are where baby clowns are made. He points out the multi-colored foam. Yeah…I got nothing.
Car all sparkly, I pick up three Old English sheepdog puppies and drive to an elementary school in St Paul (about 40 minutes away) for a party of sorts. The puppies were fluffy, the kids squealed, the grown ups smiled, the puppies peed and pooped. I cleaned it up. It’s what I do. My partner got excellent video footage of me — from behind (thank goodness for her wide angle lens) –cleaning up pee. That’s a lovely piece of video floating around the rescue page right now, lemme tell ya.
Rushed pups back to foster and me to my house, where I picked up Sailor Boy and we sat in traffic for an hour to go see Dad/Grandpa. It was actually a good visit; the last ones haven’t been as happy as he hasn’t been super responsive. But this time he actually chatted, and even cracked a joke. No one knows what was so funny, but in the middle of eating he looked across the table accusingly at the aide, and said: “You! You’re a liar!” We were shocked — then noticed he had the biggest grin and was even laughing. Sometimes the best jokes don’t have a punchline.
We all laughed out loud a few minutes later, when he decided that he liked his dessert a bit too much. Sailor Boy had been helping him with his eclair, and Dadpa decided he’d had enough. Speared the whole thing with his fork and tried to shove it all in. Wiping tears from our eyes, we promised we weren’t gonna try to steal it from him, and helped him with a piece that actually fit. It was a good visit, and I am glad Sailor Boy got to see him like this before he heads back to his duty station.
Now I am dying of hunger. There’s a new restaurant in town that I am dying to try. But we are waiting on Singer Girl. I guess I should be proud of her, as she is supporting Drummer Boy as he does his Major Presentation. So as a parent I am pleased. As a tired woman who just wants to eat pasta and drink wine, I am annoyed. I am ready to take off my bra.