My parents’ health spiraled undetected during the pandemic. It was dementia, dammit! And this is our story.
My name is Laura Lynch. And I was lucky enough to have two terrific people for parents. They were independent spirits who raised me to be the same. They were loving and strong and smart. They fell in love in their mid-20s and stayed that way until the end. Married 62 years and spent it all together. They had a wonderful life.
But their happily ever after didn't have a very happy ending.
Dementia robbed them of that.
2018: It started with Dad first.
Comments made during conversation that didn't quite jibe with the topic at hand, which Mom would dismiss: "Oh, his hearing is just getting worse" she'd say. A few of their friends even asked if he had a bit of dementia, but Mom laughed it off as she told me. I guess it was easier for us all to think that than to consider otherwise. And he was 84, after all.
Around this time, Mom was tending her roses and pulled a muscle...or so she said. My husband and I visited shortly after, and she was limping badly. I suggested she go see a doctor and that drew a swift and predictable rebuke: "I don't need a DOCTOR, LAURA". Mind you, she nor Dad EVER called me "Laura" — it was always "Lori" — Laura was my "in-trouble" name since childhood. Mom's warning was clear: back off! In the coming months, her leg kept swelling. The right one, too. She slammed the door, figuratively and literally, at any mention of getting it checked out by a doctor. Which she had not seen since my pet Gerbil, Geraldine, bit her on the hand when she was cleaning its cage...and died. This was 1974. I kid you not.
Despite all this, Mom and Dad remained active with Church, Dad's choir, and their very robust social life. They were happy and content. It was hard to see them more than once a month because their calendar was always full. It made me happy. They were engaged and active.
2019: As Mom's limp grew worse, she started to forget a few things here and there. But we chalked it up to being 83. Then the wheezing came, and went, and returned. A cold, she said. No doctors allowed.
Looking back, I can see that this is when Mom and Dad were nearing the edge of a cliff. I think Dad saw it too, because he agreed to let me — on the sly — look into retirement communities so they could age in place, something with nursing care attached. I did my homework, toured a few facilities, and brought him options. Dad (6-feet-two) worked up the courage to share this with Mom (5-feet-two), but she just walked out of the room and slammed the door. Tim, my husband and their very beloved son-in-law (Mom would do ANYTHING Tim asked), also broached the subject. He drew a kinder rebuke, but still a hard PASS.
We continued our monthly get-togethers. Dad continued to say odd things now and then, but not all the time. Mom continued to walk more slowly but she said she wasn't in pain. But we had lots of fun, and they were 80% themselves. Some days I don't feel 80% myself, who was I to judge?
March 2020: Enter COVID. And over the cliff they went.
They didn't contract COVID, but two of their friends did — caught it from their adult child who was delivering groceries to them during lockdown — and they died from it. And that was that: Mom would not allow my husband or me to come over. A driveway visit once per month was permitted, if it wasn't too cold. COVID didn't get my folks. The isolation did, exacerbating their collective dementia.
Mom's ability to walk was really impaired by this point, so I offered to have her groceries delivered. Dad had long since lost the ability to use his computer (and he was a whiz on that thing, being a former engineer). So, I called her each Sunday to get her grocery list, and then used an app to order and have them delivered to their house, left inside the garage. The calls were fun chances to catch up between visits.
With each driveway visit, Dad seemed more and more confused and struggling with his words — and Mom grew more and more annoyed with him, convinced he was "doing it for attention". Meanwhile her limp and the wheezing were both getting worse.
February 2021
Those grocery calls started to be un-fun. I usually called Mom by 8 a.m. on Sunday. If I didn't, she called me. And then she began to call me at 7:30, 6, even 5 a.m. to take her order. I had to tell her she couldn't call me before 8 a.m. She did her best to remember.
March 2021
Finally! COVID vaccines arrived in local pharmacies. My parents kept putting off getting them. And that's when my saint of a husband drove out, in a snowstorm, to take them to get vaccinated. And they could not figure out how to fill out the necessary forms, bless their hearts. So, he did it for them, bless HIS heart. When my husband told me, I cringed. And cried.
Early May 2021
After the four of us had received our recommended 2 doses of vaccines, Mom agreed we could get together. Well, my husband basically charmed our way in — she had thwarted previous attempts and given a multitude of excuses as to why we couldn't visit. Being her favorite person on earth, his persistence paid off and we went for our first post-COVID in-home visit on Mother's Day.
We entered the house and about fell over in shock. My mother kept the most spotless house this side of June Cleaver — look it up if you're younger than 60 — but now, it was filthy. Kitchen sink caked with food and crumbs, bathrooms an unholy mess and carpets reeking of dog urine because they couldn't remember when they last took the poor guys out for a walk. One dog died not 2 months later of a bladder infection. My folks had no idea what happened.
We cleaned the house and hired a housekeeper to come in every two weeks. We returned the next week and took them out for pizza. They had a great time. Dad made less sense and made random weird comments. Mom could barely walk or breathe. We made plans to visit the following week.
Mid-May 2021
My mother called me at work, a rare occurrence, and I picked up immediately. "Laura, I need you to call Lowe's for me," she said. When I asked why, she said, "Because our stove went out, and we bought a new one and they delivered it, and it didn't work, so we had them come pick it up and deliver another one — and this one doesn't work either. And I've called and called but they are blocking my number. Now you call and tell them to come pick this damn thing up!"
Oh My God, I'm thinking. Clearly two things have happened. One: I think someone forgot how to work their stove. And two: someone can't figure out a phone menu. I called. The person I reached at the store was kind as I explained my elderly parents' confusion: they picked up the stove that day. Meanwhile, my folks drove to a different store and bought stove number three. It was delivered... and you can guess the rest: it didn't work either. This constituted probably 15 phone calls from my mom over two days, starting at 10 a.m. and picking up on the second day at 5 a.m.
The following day I drove out to see this new stove. And it worked fine. But my parents couldn't figure out how to use it. I took painter's tape and covered all the extra knobs and settings they didn't need. It was still too much for them. I wrote simple instructions and one of my amazing employees made a simple chart in 16-point type. I taped it to the cabinet and walked them through it. It may as well have been written in Burmese… they absolutely could not comprehend it.
I gave up on that and offered to cook them some of the chicken Mom had ordered on her last grocery run. I fired up the perfectly operational stove, opened the fridge, and nearly threw up. It was filled to the brim with stacks upon stacks of rotting food -- all the groceries Mom had me order each week that they had not been eating because she no longer could remember how to cook.
Mid-to-late May
The confusion-filled calls from Mom increased, usually during the workday, but also at 5 a.m., or 11 p.m. Once to ask me to call a local TV station because she couldn't find it on TV — meaning she had forgotten what the channel was.
Another day, Mom called — anxious and afraid ... and sure the IRS was "out to get us". She kept mentioning a letter she received but could not find. I stopped by the next day and reviewed all their previous tax returns. Everything seemed in order. I told her not to worry, and that the IRS would send another letter if needed. She didn't believe me. I told her I'd ask her sister-in-law, my aunt who is also a lawyer, to look them over. That appeased her. I think this was the first lie I told my folks. Sidenote: a few months later I found the letter when I was cleaning out their home prior to selling — it was the letter the government had mailed out, signed by the President himself, stating that a COVID tax relief check had been mailed to them and confirming they'd received it.
A few days after this, Mom called in a panic saying she needed me to put money in their account because they were overdrawn. I should add here that Mom did "phone banking" and checked their atm card and checking account every day. I asked her to explain, but she couldn't. I stopped by the local branch of their bank and explained what was happening — and that I suspected my folks had dementia. I said I knew they could not share financial information with me but asked the teller if they could at least tell me if they were overdrawn. You'd be amazed how people will go out of their way to help you when you explain things. This kind person said it appeared Dad had inserted the debit card incorrectly at the gas station, so the transaction timed out...and the message Mom would have heard was "declined".
I drove out to my parents' house to deliver the good news in person. And to seize the opportunity to be added to ALL their accounts. I just explained I could not help next time because they said I had to be "on everything". They agreed. I had Durable Powers of Attorney drawn up, had them signed, and at least that problem was solved.
It also gave me the tiny opening to bring up the move to assisted living ... and this time Mom agreed. I jumped on it. The next day I revisited my top two choices from my previous scouting and put down a deposit on a cute apartment for them. The director even promised to remove the stove. I told Mom and Dad, and they both thanked me. I remember Mom saying, "I guess it's time, Laura, I think I'm losing it." Dad just nodded. It nearly broke me.
Things really took a turn when Mom called one night at 11 p.m. and said "Laura, I need you and Tim to get out here right now" (they lived 45 minutes away). The reason? Dad was threatening to leave — in his pajamas — and she wanted me to come get the car keys. We called the police because his driving was of course terrible by this time. We arrived just after the police. I was immediately brokering a spat between two children. The only good part was I convinced Dad to give me the car keys, which I promised to return but never did. And it was the second lie I told my folks. It was overwhelming and heartbreaking. But it was what happened the next week that would truly break me — and them.
June 5th
At 10:30 on a Saturday night, I got a call from my parents' neighbor. She said my mother was in the ER at the hospital, and she was at the ER with my dad. Diagnosis: Congestive heart failure. The neighbor had heard the sirens and by the time she went outside to see what was happening, the ambulance had left with Mom and my poor Dad was wandering around the front yard, confused and helpless. Thanks in no small part to me taking his car keys just a few days before. Dad could not remember my phone number, much less how to use his cell phone to call me. But he brought along an old church directory with phone numbers written here and there, and the neighbor somehow sifted through that and found mine.
By the time we arrived, Mom had flatlined and been resuscitated. And Dad had begun hallucinating, wandering, and speaking incoherently. Thanks to the kind attending physician at the ER, I was able to have Dad admitted on a "wellness hold" for 2 days while I tried to find a place for him to stay as I waited to see if Mom would survive and if so, what would come next.
And that's how their journey — and my story — begins.
Introducing Dementia, Dammit! In my blogs and podcasts I'll share the ins, outs, ups and downs of how I weathered my parents' storm.
My reason for doing this is simple: My heart wants their suffering to serve a purpose, for some good to come out of it, and to be a source of help and hope for others. I encourage you to share your own story, ask a question so I can respond on the show. Remember, it IS possible to navigate the journey of aging loved ones without losing yourself in the process.