Life, and Death, with Dementia

It’s complicated

I’ve been wanting to write more for a while. Kept waiting for the “moment” to hit when (as it occasionally happens) the theme and progression fall into my brain, nearly whole. I’ve wanted to write, but what I wanted to write about seemed so complicated. I couldn’t figure out how to do it properly.

It’s still hard to figure out how I’m going to manage that (writing it properly), but I feel like I don’t have a choice. I have to do this, now, because my mom died this week.

Even though she’d been declining through her dementia for a long while, this was a very sudden event (possibly a massive stroke, aneurysm, or heart attack – we’ll never know for sure because we didn’t want to keep her artificially alive just to put her through tests to satisfy our curiosity.) She’s gone, so now the act of remembering has become that much more urgent.

Before

What I had been wanting to focus on were some of the daily illustrations of dementia. The simultaneously silly and heartbreaking everyday things. How mom, in her declining state, had developed (or maybe rediscovered) a long-dormant instinct to stockpile grocery items. She’d be down just one glass in a half-gallon container of milk but needed two more half gallons, regardless of whether there was any space for them in the refrigerator. (Rather than trying to convince her that she only needed one, I would buy just one and tell her that was all they had at the store.)

How, when she would make a note on her grocery list notepad on the kitchen counter for something she felt she needed, she was no longer able to just name the item: “butter.” She had to copy the details of the product packaging: “Land O Lakes Butter Salted 3 when farmers win, we all win.” (The “3” was how many she wanted. But she got so focused on making sure she wrote down the exact, correct product name that she temporarily forgot that she needed to say how many. When it came back into her head, she had to write it down, right then, before she forgot.)

At the top of each new list was the painstakingly noted date, which I once surreptitiously observed her copying from the digital clock on the kitchen counter: “July 25 2022.”

Seeing her lists broke my heart a little, every time.

Her need to capture the date pointed to another challenge that had taken hold over the past couple of months: she could no longer fully grasp the progression of time. Seeing this issue developing, I had taught her to cross off each day on the calendar as it passed.

Directly in front of the calendar on the kitchen counter also stands a digital clock, which displays, in large numbers and letters, the time (a.m. or p.m.), the day of the week, month, date, and year. The combination of that clock and the calendar got her through for a while. Recently though, whether intra-day or over longer stretches, we discovered that appointments written in the calendar seemed to create more stress and confusion than clarity.

She would begin preparing days in advance for appointments, regardless of whether they were with a doctor or for a haircut. Where she would normally sleep until well-past 10 a.m., beginning two or three days pre-appointment, she’d be up and fretting at 6:00. The same confusion plagued the evenings. When an appointment was visible within a week, I would arrive for my nightly sleepover around 9 p.m to often find her, fully dressed, with her purse on the kitchen counter, ready to leave, even though the event was still two or three days (and a night!) away. Every night she would ask me about the appointment: who it was with (even though it was written there), what it was for, whether I was going with her. (Of course I was, I would tell her with a smile. “I’m your appointment taxi and valet!”)

While it was too late to remove the appointments I had already written in, we decided that I would no longer add any new ones until the day before the event.

The best help ever

Back in March, my husband, ever curious Googler that he is, made an amazing find when he discovered a training program developed by Judy Cornish, the author of “Dementia with Dignity,” and “The Dementia Handbook.” It’s called the DAWN Method® (the Dementia & Alzheimer’s Wellbeing Network), and it changed our lives.

The cost was under $300 for a license for up to six users to access eight “lessons” for a year. Each lesson is typically comprised of four to five topics, with a short quiz after each topical session. Each topic takes only 10 – 20 minutes to get through, so it’s quite manageable to squeeze lessons in whenever you have a few minutes available.

There aren’t enough superlatives in the English language to capture how valuable this material was to my sister and me. It synthesized and organized an approach to care which we had begun to intuit on our own, but would never have had the capacity to fully realize.

If you’ve never heard of Judy or this approach, she summarizes it, and why we should care, beautifully in her TED Talk, which she delivered in late 2017.

Blessings?

A few weeks ago, dad had a strangely “lucid” afternoon. Normally, he’s largely non-verbal, but on this particular day, he managed to ask for my mother very clearly. Then, with mom standing next to his bedside for a couple of hours, they proceeded to have a full “conversation.” It was near total gibberish to those who were around (my sister and her husband, the caregivers), but apparently delighted the two of them.

Back in the spring when the weather was still cooperative enough to allow for it, I began getting mom out for walks, which she loved. We’d walk around her “neighborhood,” or I’d take her to one of the parks in town along the Connecticut river. We’d walk along the sidewalks or trails, and I’d tell her about the plants or trees or birds we’d see. When my sister was here, the three of us would make a little outing of it together.

We also started going out to lunch. We first took her out for her birthday, but it was such a positive experience for her that we kept it up. Initially we’d be sure to have at least one lunch out every time my sister came down, but mom loved it so much that my sister and I each found excuses to take her out solo, even when the other one of us wasn’t around. That was the plan for the day she died. She was all excited the night before. She went to sleep happy, and, no doubt, got up that day with the idea of picking out her outfit for the event.

Earlier this summer, I got mom & dad a huge rectangular cantilevered umbrella for their back deck so they could enjoy sitting out there this summer, protected from the otherwise impossibly hot sun. Mom had a bit of a love/hate relationship with that umbrella – she was unable to master how to open and close it – no surprise considering her dementia. So, when I was staying over, unless the weather was predicted to be averse to large umbrella use, I’d open it up early in the morning. I’d remind her throughout the day that I would close it that evening so she wouldn’t feel the need to struggle with it because that could put her in a mightily foul mood.

This past Friday, my sister took this sweet photo of the two of them on the deck, under the umbrella:

“Grielief”

My mom could be silly and loving and adorable. The next day, or even the next hour, if something set her off, she could be snarky and passive aggressive. She was always a more challenging personality to navigate than my dad; there was a lot of tiptoeing on eggshells. But the payoff was huge when you got the tiptoeing right and she was happy. When she was happy, she was nearly irresistibly cute. (DAWN really helped us understand why these mood issues happen with dementia, and how to avoid, or at least minimize those episodes, by the way.)

She was perfectly imperfect. As we all are.

We were genuinely worried about how we were going to manage to keep her and my dad together if her loss of cognition became too profound. We mused, a lot, about how she would do after dad was gone. We reckoned it would be one extreme or the other: either she’d rally and become super-social again, or she’d hurtle off a cognitive cliff, withdraw, waste away.

We considered our paths, the angles of our potential defense. Dad’s care is so much more straightforward than hers: he’s bed-bound, non-ambulatory. She was anything but. He’s quiet and even-tempered. Easy. She required planning, extra thought and consideration around the impact of nearly every move. The glide path for care planning seemed so much clearer if it were dad who lived longer. We talked about that. But we didn’t allow ourselves the relative luxury to imagine that it really could be mom who went first.

And now, here we are. My sister and I are both experiencing similar swings between grief and relief. I described it the other night in a text to a friend, and, I think, coined a new word: “grielief.”

I’m so grateful that we figured out how to make mom’s last few years, and especially her last few months, as happy and stress-free as they could be.

It’s all still so fresh that I keep forgetting that I don’t have to worry about the things I always worried about with her every day: what we had for her to eat that would appeal to her; whether the umbrella was up and it was getting breezy (which stressed her out); whether there was enough “hummingbird juice” as I called it, ready to pour into the feeders. (If there wasn’t, she’d feel like she had to make it, but even that relatively simple recipe: four parts water, one part sugar – stymied and confused her. So I would keep tabs on how much was left and, while she slept in the early morning, I would clean out the feeders, make more “juice,” fill them, then refill the Hummingbird Juice jar we kept on the counter.)

There had come to be so many otherwise routine things that had to be so carefully arranged and carried out to ensure we kept her in a happy place. All that extra energy, which I hadn’t even realized I was expending, is no longer necessary. But the “not necessary” leaves a strange void. I won’t have to tiptoe around in the morning to not wake her up. I won’t have to plan meticulously for fasting bloodwork or think so hard about the best time to put the dermatologist’s appointment into the calendar.

It’s a strange, melancholy kind of relief.

Wondering

When my mother’s mother died seventeen years ago, in the weeks leading up to her passing, she told me how her brother (who had been dead for at least 20 years) had been coming to visit her. He was standing at the foot of her bed talking to her! She wasn’t scared or spooked. It was just a plain fact.

When my brother-in-law died, my husband was utterly distraught that he couldn’t make it to Maine in time to be with him. We were awake for hours into the night; Tim was inconsolable. As we finally lay down to try to get some sleep around 3 a.m., I silently asked Bill (his now-deceased brother) to somehow let Tim know that he was okay. When Tim got up a few hours later, he (who often claims he doesn’t dream) told me he’d had a dream about Bill: he was sitting in a familiar chair, eating pretzels. I asked him if Bill seemed okay. He said yes. I told him how, before I fell asleep, I’d asked Bill to do something to let him know he was okay. I thought that was probably his answer.

My dad’s mother died four years ago, at the end of a very long life (100 years and two months), and after six years of her own decline through dementia. By the time she passed away, she had regressed cognitively to the state of a small child, but she was happy. She didn’t recognize any of us by then. I found myself wondering after her passing: how much of that “essence” of life energy – of that person – stays intact through dementia? Did her spirit re-orient to her “self” when she died? Could her spirit energy recognize us again once she left her body?

For the past couple of months, mom had been telling us she was seeing her (deceased) family in her room. Once she told of how they walked over to my dad and were standing next to his bed. On other occasions she just mentioned she’d seen them there in her room. Just as it was with my grandmother, there was no fear in these stories. It was as if it was simply a routine visit from a family member (who happened to be dead). We always responded positively to these stories with her: “that’s so awesome, mom!”

I’m not a religious person, but I have a hard time believing that the energy that is the essence – the “soul” of a person – simply vanishes when they die. It’s a question of physics, really, if you ask me – the energy has to remain in some form.

Maybe a life is like very slow-motion lightning – in some cases it hits things (people?) and transfers that energy. In other cases, it just charges the atmosphere as it dissipates.

Maybe if you transfer enough of your “self” to others, that’s how your energy remains. And maybe if you don’t, your energy sticks around for a while, until it’s done all that it needs to do.

I kinda like thinking of it that way.

19 thoughts on “Life, and Death, with Dementia

  1. Marsha, I am so sad to read of your loss of your mother. You are a good daughter. You are a good role model for your sons. You are a loving wife. Nancy

  2. Marcia. I was absolutely absorbed in your narrative, and so taken with your word “grielief”. There are so many aspects of your narrative that cry out for long and thoughtful discussion. For example, I’m sure many people privately think to themselves that they would prefer to not go through dementia as they take the final steps in their journey. For many, that likely means being warehoused in some “memory care” facility where the staff will “discover” them one morning or evening. Another aspect I am particularly strident on is the distinction between religion and spirituality. My decades of experience and professional study in thanatology supports my conclusion that an entirety of spiritual experience is fully real and demonstrable without a man made god in sight. The connection of the two concepts occurs only because people fail to engage in basic logic deeply enough.

    I hope your column is widely read; I cannot imagine there could be anyone, patient or caregiver, who would not be deeply rewarded by reading your journey. Thank you so very much.

    1. Thank you for your thoughtful comments, Marco – I always love to hear from you! I completely agree re: the difference between religion and spirituality. Many years ago (at least 25), through a (perhaps oddly!) casual investigation/ self-directed exploration of eastern philosophies and quantum physics,I came to the conclusion that religions began as man’s attempt to describe and explain the unknowable, and, at their best, to tap the power of collective consciousness through common ritual. At their worst, of course, they demand adherence to an inauthentically maintained set of beliefs and morality that ultimately turns inward on itself and stifles joy and creativity in the service of holding itself together. I opt, therefore, to leave out the human “god” construct, most especially especially the monotheistic ones!!

  3. I’m so sorry for your loss. I’ve been following your story and shared your blog with a colleague whose Mother is battling dementia. Although my Mom passed away from Cancer, the remediation effected her brain so that she dementia-like symptoms. I resonate so much with what you’ve shared. As I read each blog I hear it in your voice, and gain comfort that someone has put into words similar feelings that I have on death, parents, siblings, etc. I hope you find comfort is the fond memories of your Mom. With Sympathy, Robin Golden (Grisel)

    1. It’s so wonderful to hear from you Robin, and I’m so very glad to know about it whenever my journey resonates with others – really the entire reason I began telling the stories of this process! There will probably still be more, but even if this were to be my last post, I hope my recommendation about the DAWN (R) program has the impact I know it can for those going through dementia with a loved one! Thanks so so much for commenting!! I hope you’re well!!

  4. Marcia – I am so so sorry to hear you lost your mom. Brightened my day every time I saw her. Will be thinking of you and your family.

    1. Mike, thank you so very much – I was just telling her last week that maybe I’d call you to have a look at the dining room ceiling when I got back from vacation. There’s a 6” stain there from an old leak – it’s one of those items I had on my list of things that I worried about in the ongoing process of keeping mom happy!

  5. Marcia, Tim, James and Owen,
    Sweta and I are so sorry for your loss. Marcia, you have been a loving and thoughtful daughter and it’s a blessing that you have been able to spend so much time with your Mother and Father. Enjoy the remaining time with your Father. I have to believe that writing this blog and tribute have been cathartic for you. I love your new word “grielief”, which so well describes this experience that so many of us go through. All our best, Mike & Sweta

  6. While the story is sad – I love this! It will be strange when I no longer have to worry……

    1. Call or text me any time Stacey. I will be here for you, even if all you need is to rant about something. And honestly, I cannot recommend the DAWN program enough. Such enlightenment. Worth so many, many times more than the relatively small cost.

  7. Marcia, I am so sorry to hear of your Mother’s death. May you find peace in knowing what a wonderful daughter and caregiver you were to her. Your love for your Mom and your Dad has always shined brightly through your posts. You have also been a teacher as you’ve shared your journey with all of us, and I know it hasn’t been an easy one.

    Losing a parent is so hard, I don’t care how old you are. Their death leaves a hole in your heart that will never be filled by another.

    I am holding you and your family close in heart and prayer as you navigate the world in a different way. Know that you are loved. ❤️

    Beth

    1. Aww Beth – whether you know it or not, what you’ve shared about hospice was so very helpful. It has made such a huge difference in my father’s care, and with our peace of mind!!

      1. That makes me very happy. I wish more people would take advantage of Hospice and understood that they don’t have to wait until the eleventh hour to get their loved one under care.

  8. It’s a journey we all face and we get thru it as better people while hopefully sharing the support of others. It’s a gift to be able to share the simple joys and the heartbreaks of the ones close to us. Thank you for illuminating this entire trip so eloquently and with the grace and fortitude it takes to make it happen.

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