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Transitioning through dementia with my mother

When you care for a loved one with dementia, life becomes a series of transitions. In our case, both parents have dementia, though each “version” couldn’t be more different from the other. I recently wrote about our trajectory with Dad. While his transitions have actually been relatively smooth, the path with Mom has been more fraught.

Dad made his peace with his condition three years ago. Mom’s diagnosis came several months later, but she still hasn’t fully grasped her diagnosis.

She can’t understand what’s happening to her brain. Why she can’t think, read, speak a complete sentence. She thinks it’s because she hit her head when she fell in a fainting episode due to a cardiac bundle branch block. (For the record, she didn’t hit her head.) Wonders if it’s because of the kidney cancer she had removed a year later.

She thinks she’s “getting stupid.” I tell her that it’s just her brain, not her. Over and over again, she says she doesn’t know what’s happening with her brain. I’ve told her it’s her condition. Assured her it has nothing to do with how smart she is. Her propensity for self-flagellation brings with it the threat of a frustration/anger emotional spiral that’s more and more difficult to overcome.

Every transition, with Dad or with Mom, is a potential emotional minefield for Mom. A seemingly logical, rational response to some situation, which, for anyone else might be a non-event, could be the spark to her powder keg. Anger is her default response to fear and uncertainty.

Hence, “fraught.”

Not everything needs permission, or even discussion

First, the things I did with little or no discussion with mom, because they would have been emotional triggers:

Mail forwarding and address change notification

This was to ensure all bills and important documents were handled appropriately, since Mom would sometimes misplace or hide things she didn’t want me to see. She would also sometimes still hand financial documents to my father, in spite of the fact that he no longer had the facility to understand them.

Assumption of bill payment responsibility

Early-on, I used to have mom put all the bills (or anything that looked like a bill) into a folder. We’d sit down on Saturdays and pay them together. I’d write all the checks and have her sign them. As I did that, I’d give her the info to log them all into their checkbook register. I had her use the calculator to update the checkbook balance. It didn’t take long before I was taking over the whole process, and she’d just observe and sign the checks. I could see her growing confusion as I’d try to explain the incoming mail to her. She was easily thrown by marketing pieces that were deliberately designed to look like bills that required action. (Infuriating!!!) Eventually, I began setting up their regular bills (utilities, insurance, credit cards, etc.) with e-pay through their bank. The corresponding decrease in mail volume did do a good job of setting the stage for the mail forwarding. I didn’t do it that way on purpose, but as it turned out, it helped the transition to happen more gradually.

A methodical invocation of my Power of Attorney

Dad had previously ensured Power of Attorney was set up for both my sister and me for each of my parents. Slowly, as I took over all the bill payments, I activated my POA over every financial and health-related account or relationship my parents had. From bank, credit card, and investment accounts to medical and prescription insurance coverage, home and auto insurance, doctors, dentists. . . you name it, I had to call or write to every one of them. Everyone received copies of the POA documents. I didn’t discuss it with Mom. My sister knew, and that was more important.

A 50% increase in caregiver hours

When Dad got home from the care facility after Covid, I wanted to be sure we had coverage for him as late/early as practical, since, well, incontinence support products only hold up so much through the night. This change seemed to go relatively unnoticed by Mom, which was good. Thankfully, the fact that Dad was no longer mobile meant extremely low risk of him wriggling his way out of bed at night. So we didn’t need overnight coverage. I tried that a couple of years ago after Mom’s kidney surgery, thinking it was a good time to transition to 24-hour support. Colossal nope. She freaked out at the idea of live-in help, so hopefully it will be quite some time before I have to broach that one again.

In-home nursing care for dad

The last time I’d had a visiting nurse come in for dad, it was during the height of their Covid infections, and Mom’s (not very welcoming) reaction to the nurse’s presence triggered probably the biggest fight we’d ever had. It also confirmed my fears about Dad’s condition and our inability to properly care for him in his condition and without the correct equipment. That catalyzed his temporary move to the care facility.

I wasn’t looking forward to her response to more nurses coming in, but I knew what needed to happen, so I did it. (On the day they were scheduled for their first visit, I did explain what was happening any why, and she took it in stride. I can’t say with any certainty whether that would have been the case had I told her ahead of time or tried to make her a part of the decision.)

The hospice tiptoe

As Dad transitioned to hospice care, I asked the nursing team and our caregivers to avoid using the word “hospice.” I knew Mom wasn’t yet emotionally ready to hear it. I also knew the time would come when I’d be able to explain it in the context of her own observations.

As sure as fall follows summer, the opportunity presented itself a couple of months later. She was emotional, but open to my explanation, especially when I shared that “hospice” didn’t mean his death was imminent.

It’s clear she understands at some level that he isn’t getting better. She’ll occasionally mention some point in the future “when he’s gone.” it was one of those statements that opened the door for me to tell her about hospice. That doesn’t mean she’s able to grasp why his behavior is growing more unfamiliar all the time. Why he doesn’t talk to her, or often, even recognize her.

Cooking

With increasing frequency, Dad has no interest in food. Still, whenever I prompt Mom to be sure she has a plan for dinner, she expresses concern over whether Dad’s going to like it. I remind her a few times a week that he’s not likely to be very interested in dinner. She should have what she wants. 61 years of marriage and meals is a lot of history to give up.

At the same time, Mom’s ability to follow a recipe has fallen off a cliff. A couple of years ago, I’d subscribed Mom & Dad to Sunbasket – a meal service that provides the ingredients and recipes for a wide, healthy array of weekly options. She loved it for a few years.

When my sister comes to visit, she stays there, so her observations are invaluable. After her most recent stay, she noted how long it was taking Mom to get through even simple recipes. And that Mom welcomed my sister stepping in to take over in the kitchen and prepare the dinners. (Not typical!!)

I wasn’t sure how she would take the idea of abandoning Sunbasket, never mind the health implications of where her diet might go without it. I’d heard about a local service that focuses on healthy, fully prepared meals, so I tried it myself. With each meal of theirs I tried and liked (all of them), I would save some to share with her. I told her excitedly about this new discovery. From there, it was a short leap to getting her signed up, too.

It’s early days with the new service (called October Kitchen), but she’s expressed how relieved she is not having to figure out the recipes anymore. Bonus: she also really likes the food!

Driving

Another visit by my sister yielded more important information. She just happened to observe Mom attempting, with great hesitancy, to back the car out of the garage one afternoon. A few days later, I suggested to Mom that we make a weekly outing of grocery shopping together. This was pretty much the only reason she drove anymore.

It was a twist of fortune that on our first outing, she decided to drive. That experience included, among other things, an attempted “left-turn-on-red” (aborted by my less-than-calm, “WHOA!! What are you doing??”) After shopping, Mom was perfectly happy to go back to our typical arrangement, and I drove home. I also “forgot” to return the car keys to her purse afterward. That bought time for me to figure out how I was going to deliver the news.

Knowing her reaction could very well be less-than-accepting, I needed something to take the edge off. My sister and I talked it through.

Mom had been complaining for a while about her eyeglasses. We had an appointment with the eye doctor coming up in a month, so I knew we could use that as a convenient buffer. I had also done some research earlier in the year on driver evaluation services in the area. With those two elements and some well-placed questions by my sister during our conversation, I hatched my delivery plan.

I decided that when I told Mom I didn’t think she should be driving anymore, I could soften the blow. I’d immediately suggest that if she really disagreed, we could wait until after her eye doctor’s appointment. At that point, one of these places could assess her (there was one right across the river). If they said she was okay to drive, she could keep driving. Two sentences.

The conversation went exactly as I’d anticipated. A constellation of emotions crossed her face after the first sentence (surprise, dismay, anger, confusion, a flicker of relief). The second gave her some space and a sense of control. It didn’t matter that I knew there was no way she’d ever go for the evaluation.

A little levity for a change

Thank goodness not all of the transitions impacting Mom have been such an emotional drain. She’d been toying with the idea of changing the color scheme on the first floor of their place on and off for months. Dad was a meticulous keeper of paperwork and receipts, so a little bit of digging and Mom found the details of their last paint job in their former house. She had really loved those colors.

After some digging of my own, I got some references for a few painters. I talked with each of them on the phone. I had each of them come to Mom’s so I could walk them through the job. They all had great reviews, so my primary objective was to get a feel for which of them would be the best fit with Mom – work style and personality.

One was far too frenetic. Another was great but couldn’t start for nearly a month, and once we began the process, Mom was chomping at the bit to get going. The third had every hallmark of greatness, and he delivered. He was a former marketing executive who’d made a big career change when Covid hit. His communication and follow up skills were exemplary, and he navigated my mother beautifully. His work was as meticulous as Dad’s recordkeeping.

More to come

I’ve noted so many times over this past year how with each transition, their worlds keep get smaller.

For Mom, there will be little things, like changing her drivers license to an ID card. (Though man, that was a big pain when I did it for Dad.)

There will be the increasingly rapid changes in Dad’s care continuum as he slides towards death. And the enormous transition to a life without him. My sister and I have a plan for that too, but it only goes so far.

Mom will continue her own path along the anchor line of her dementia. Losing Dad may break her. But I wouldn’t be at all surprised if her inherently more social nature and fighting spirit are renewed, even if briefly, and her world gets a little bigger again before it shrinks away to nothing.