About Leslie

I'm a work-at-home parent of two daughters, wife of one husband, and daughter of two elderly parents who live a half hour away. We live in the lovely New England town of Sandwich, MA. With my girls no longer little but not yet grown, and my parents needing more of my help than ever before, I'm feeling the "sandwich" in "sandwich generation." Good thing I like sandwiches.

Letting it go to voicemail

As my parents’ health was deteriorating and they needed more and more in-home care, I was getting a lot of phone calls from the VNA and other agencies to coordinate it, and of course from Mom and Dad themselves. Any one of those calls could have meant a crisis, or at the very least, a worry or a hassle. It got so that whenever my phone rang, my stomach would clench with anxiety. It was too much.

To avoid associating that feeling with every phone call I ever got, I assigned the iPhone’s “bulletin” ring tone to all contacts related to my parents in any way. My “normal” ring tone (James Bond theme music, natch) became nonthreatening again.

Though the volume of parent-related calls is way down now, I’ve maintained the “bulletin” ring tone for my mother, her doctors, and her assisted living facility. One of the healthiest changes that’s happened for me since Mom moved there is that I don’t feel I have to answer all her calls. I know she is fine. When I don’t want to talk, or listen, I just don’t. If I’m walking, sleeping, shopping, hanging out with friends or family, I don’t have to. If I just don’t feel like it, I don’t have to.

Such a simple thing, to have regained that modicum of control over my own life. Such a huge relief.

This morning, on a walk in the woods, I heard the bulletin tone and declined the call. This evening, with dinner on the stove, I heard the bulletin tone and declined the call. I listened to the voicemails later. They were not urgent. I’m going to see her tomorrow. She can wait.

I’m allowed to walk in nature undisturbed. I’m entitled to make dinner for my family without jumping at an interruption from my mother.

I was on a short leash for a long time, and I’m not anymore.

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The House

My parents’ house now needs to be gone through room by room, to sort out what we want to keep, donate, sell, recycle or discard. That’s what I’ve been up to for the last few months.

It was hard, at first, going to the empty house. It is so, so quiet. Unnervingly quiet. Then just as I’m used to the sound of my own breathing, Dad’s talking watch will shout out from whatever corner it’s stashed in: “The time. Is two. O’clock. P.M.” and I damn near jump out of my skin.

If the weather allows, I open all the windows to get the air moving around. My parents were not fresh air people, and some of the windows haven’t been opened since the first Clinton administration. Just today I noticed that the house is beginning to smell different, on first opening the door. This is a good thing.

I have been pretty businesslike about most of this, but once in a while something will take me by surprise and I’ll get a hit of some emotion or other. Discarding my father’s ostomy supplies, for instance, put me into a sudden rage. He suffered so, with that. The ostomy, while no fun, maybe wouldn’t have been so awful on its own, but being blind made it a relentless trial.  I would say his last couple of years were miserable on this basis alone.

I’m angry that he suffered. I’m angry that my mother was unwilling or unable to do more to help him with the day-to-day maintenance. I’m really, really angry that there was never any good way to handle middle-of-the-night ostomy leaks. It was very difficult to get anyone on call for that, and Dad spent many sleepless nights waiting for help. See again being angry that Mom didn’t do more, and there is plenty to rage about.

That’s all over now, and I can’t help but be glad for him that he’s on the other side of it.

I’ve let the talking watch ambush me for a few months, but last week, I finally threw it away. I know what time it is, and wherever Dad is or isn’t, he doesn’t need to.

Life in Memory Care

Assisted living is a whole new world, my friends.

Where Mom lives now, the residents are in different stages of their various dementias (“I think a lot of these people have Alzheimer’s,” she whispered to me one day, without irony). On one end of the spectrum are those who move around on their own, speak clearly and cogently, socialize well and participate in the activities. If they could remember things, they wouldn’t be here. On the other, there are a couple of people who never speak at all, or who need to be wheeled around from one part of their day to the next. Most residents fall somewhere in the middle.

I am there several times a week, and each visit brings something poignant, or hilarious, or lovely, or sad.

It makes me happy to see Mom making friends with some of her housemates, behaving less frostily toward others, and learning to ignore the one poisonously negative lady who lives to ruin everybody else’s day (that’d be Vilma, whose superpower is to leave you feeling bad for hours after a single interaction).

Mom hangs out with Ruthie and Barb, two lovely people whose short term memories are totally shot, but who are so nice and otherwise good company that it makes me sad they can’t remember the beginnings of our lunchtime conversations. On the up side, I don’t have to worry about repeating myself.

The other night Mom called me, quite upset. “Something really bad has happened here,” she said, “and we are all a bit shaken.” Prone to dark drama, I thought immediately that maybe someone had been injured, or had some kind of violent outburst. What could have shaken everybody? “Ruthie’s room was ransacked, and her purse was taken!” Oh dear. I suggested that maybe Ruth had been looking for something in her room, then come out for a meal and forgotten how she’d left things, returning to find them in upsetting disarray. We agreed that was a more likely explanation, and I urged Mom to ask one of the staff, if she felt at all frightened or uneasy about it. The next day, Ruthie was fine, not having been ransacked or robbed. All is well. But it made me realize how quickly fear can spread around in a group of people who feel vulnerable and talk a lot, but don’t reason very well.

 

Big Changes: Mom Edition

Over the last many months, I have been researching places for Mom to live after Dad died (with 12 years between them, it was a fair bet he’d predecease her). Several memory care assisted living places have been built nearby in recent years, and existing assisted living communities have added memory care to their offerings. It’s a growing need, for sure. Generally, these are not places where couples go to live together, so they weren’t viable considerations till Dad passed. Still, I collected brochures, gathered hints from people I know who work in the industry, and listened closely to other adult children tell their stories.

It is strange to me that we are so isolated in this process. Each family kind of has to invent the wheel for themselves. There is so much anxiety, and so little shared wisdom. The closest thing I can compare it to is applying to college, but in that, the anxiety comes from too much information about what other families are doing. There’s always the sense that everyone else is thinking of something you’ve forgotten, or that they’ve gotten better organized sooner, or something. With elder care, it’s anxiety borne of isolation. There’s no pathway to it that families take together or in parallel. It seems to me that as a society, we are kind of getting it wrong.

But I digress.

Some assisted living communities have memory care components; others are designed specifically and only for memory care. Some have all-inclusive pricing; others have tiered or itemized price lists. There are different settings, cultures, philosophies and programming at each. It is so much to consider, and the worst thing is to have to do it in a hurry; yet, many of us are in precisely that position. We need a place for a parent, stat. I did the best I could ahead of time and still feel it wasn’t enough.

Soon after Dad died, I made an appointment to tour the place I had liked best on paper and online. It was everything I could have hoped for, but expensive, so I needed time to be sure that my mother’s income and assets could make it work. I couldn’t commit right away and while I hated to let it go, had to pass up an available room. A couple of weeks later, when Mom was feeling up to checking the place out herself, Robin and I brought her there for the day. I thought she would have mixed feelings and we’d be in for a big discussion, but she liked it, and even said we should leave a deposit! By this time I knew I should not pass up the opportunity.

So it came to be that just six weeks after my father’s death, Aaron and Robin and I moved my mother into a memory care assisted living facility just 20 minutes’ drive from my house. She’s been so brave about giving up her familiar surroundings so soon after losing her husband of 52 years. It is early days yet but she seems to be adjusting fairly well… which is not to say she’s constantly delighted, but that she’s not going through anything that isn’t to be expected.

As for me, it is taking some getting used to not having to call her several times a day, and not living with the constant background anxiety that I might get an emergency phone call at any time of the night. There is very much to do at my parents’ house down Cape, but that is all just stuff. The emotional changes are profound and will take some time to realize. It is a mix of grief, relief, sympathy, exultation, sadness, happiness… everything, just everything. Whatever the feeling of the moment, though, I know this was absolutely the right move.

It’s a new chapter.

Big Changes: Dad Edition

Well. Some things have happened since last I wrote.

My father died 6 weeks ago. He hadn’t been feeling well but perked up just as I was about to take him to the doctor. We went for a haircut, then out for an omelet, which he ate with enthusiasm. Gusto, even. He was content and ready for a nap when I left him at home after lunch.

That night he had chest pain and was unable to get a breath. He was admitted to the hospital and found to have severe congestive heart failure. After several days he was discharged to hospice care at home, which I scrambled to supplement with 24-hour private care because my mother was in no way capable of managing things between hospice nurse visits.

Omelet day was a Tuesday; he came home the following Monday, and died that Friday. My brother and I and Mom, of course, were there.

It has been a blur of first doctors and nurses and health aides, then phone calls and emails, arrangements and announcements. We had a small service and I was so stressed the week before because I had to write and deliver a remembrance, and all I had was phrases and scraps of thoughts that wouldn’t complete. It came together eventually and I’m told it went over well.

Now there is the estate to settle and so many forms to fill out. So. Many. Forms.

In the meantime, my mother still has dementia… and now has lost her husband of 52 years. She’s heartbroken, lonely, incredibly needy, and increasingly frantic and forgetful. I increased the frequency of my own visits and outside care in her home, and called her many times a day on top of it. Still, she managed to flood a bathroom, and I had to call a disaster restoration company (which I already had in my contacts due to her kitchen fire incident a few years back) to dry things up and take away sodden carpets, etc. That was the week of my Dad’s funeral, so at least I had nothing else to do. Har.

Anyway. I have had to compartmentalize grief for my Dad to handle care for my Mom. It hits at strange times out of the blue, but as long as I keep moving, I am OK.

Sometimes as I’m managing one or another of the thousand-and-one things there are to manage, I say “I’m doing it, Dad. I’m doing it. It’s all OK.” He was so worried about dying and leaving me to deal with all the stuff in the house. But the stuff is the least of it. Stuff is just stuff. It’s nothing. Mom, unhappy and unsafe alone in the house, is the bigger issue.

All the Doctors

We had another medical appointment today–a follow-up with Mom’s primary care physician, whom I’ll call Dr. Striker. There was no particular reason to see him except to keep the appointment. As the person solely responsible for scheduling, providing transportation to, sitting in on, and managing all the information from all medical appointments for both my parents, I am beginning to wonder why we have to be such frequent fliers in all these places.

For Mom, in addition to Striker, we see Dr. Wolf, neurologist; Dr. King, urologist; Dr. East, gastroenterologist; Dr. Hawthorn, cardiologist; Dr. Hamilton, dentist; Dr. Randall, neurosurgeon; Dr. Odon, ophthamologist; Dr. Forrest, otolaryngologist; Dr. Lancaster, psychiatrist. I’m sure there are others I’ve forgotten. It just now occurs to me that I have no idea who her gynecologist is, or whether she should be seeing one. I have no plans to look into it.

Dad visits many of these same people, and additional eye doctors: Dr. Neuburger, glaucoma specialist, and Dr. Fenly, retina specialist. Did I mention he’s blind? Every time we see these people they say, essentially, “no, your vision is never coming back. Yes, that must be hard. See you next time!’

After a couple years in this role, I have finally smartened up. I now stretch out the intervals between non-issue “follow-up” visits to various doctors as widely as I can, and in the case of Hawthorn at least, I schedule Mom and Dad for the same time. Neither of them currently has any cardiac problems, but they both see Hawthorn every six months. That puts me in his office four times a year. We’re becoming friends. I recently noticed he stopped wearing a wedding ring and wondered what it would be like to know him in a different context.

It’s a bit much, frankly.

Anyway, there we were in Striker’s office. Mom’s lost quite a bit of weight–40 pounds in six months–which is excellent for many reasons, especially reducing back pain, but nobody can tell why it is happening. She’s proud to say she’s walking back and forth down the hall a lot. That’s great and all, but nobody loses almost two pounds a week from shuffling from kitchen to bathroom. A more likely explanation is that she’s not eating nearly as much as she used to. When we go out for lunch at her favorite restaurant, she always finishes her meal and gets dessert, so I can only imagine that she isn’t eating at home. Striker said the weight loss is good but he’d like to see her again in 4 months, because of course he would.

The major complaints today were the same as they’ve been for years: chronic cough, chronic shortness of breath. I don’t know what to make of the cough, and neither does anyone she talks to about it. It’s no mystery, though, why someone for whom a 30-foot walk constitutes “exercise” is chronically short of breath. Hawthorn, seeing no cardiac explanation, had ordered a CT scan of her lungs, which Striker reported revealed “mild” pulmonary fibrosis. He says “mild” means it wouldn’t probably account for the near-constant panting, but who knows.

We shall now pursue this mystery with a pulmonologist, because we hadn’t yet collected one of those.

Asking God to fix it

There was a time when my non-belief in a supreme supernatural being would have upset (offended?) my mother quite a lot.

It’s not something we talk much about. When my daughters were babies (OK, Josie was 2 1/2…) I had them baptized in the Episcopal church, mostly to check that box for my parents’ sake. When Mom noticed I wasn’t taking them to church much afterwards, I explained why it wasn’t right for us without touching on the “because there is no god” part. When she said “well, it’s not like you’re an atheist. That would be really painful for your Dad and me,” I let it go, because it doesn’t matter. It’s not about her, or Dad (whose true feelings I don’t actually know). It’s not a position I need to defend or discuss. I don’t proselytize.

Fast forward a decade: In the car last week, she was talking about how my Dad’s suffering (blindness, ostomy) upsets her. “I love him so much. Every night I pray to God to heal his eyes, and nothing ever happens. I don’t know what to make of that.”

I didn’t say that what to make of that is that prayer is futile, unless doing it makes you feel better. The “power of prayer” isn’t in getting what you asked for.

Instead, I said “that’s a better question for Brian than for me, Mom.” Brian is the rector of my parents’ church. He’s checked in with them a couple times a year since they’ve been homebound. While it’s is not a role I hold in particularly high esteem, this is certainly his area of expertise. You bring taxes to your accountant. You bring questions of faith to your priest.

“So, would you call yourself a non-believer?” Ah… a direct question. I’m not gonna argue, but I’m not gonna lie, either. “Yes, I would say that.”

Pause. Then she talked a bit about how she’d been going to church and taught about Jesus since her earliest childhood. Faith, she was saying, is part of who she is.

I thought more about that. My mother’s always been a churchgoer, and an involved one. When I was about 6, she hosted a small serious gathering in our home at which a woman (the horror!) performed the Eucharist. It was the early 1970s and such things, I guess, were Not Done. I had the impression that we were breaking serious barriers in our dining room, behind drawn shades. It felt subversive and important and right. We were feminist radicals!

Through the years, she served on vestries, search committees, and, always very proudly, as a lay reader. In retirement she enrolled in a program for laypeople called “Education for Ministry.” It’s a four-year study, and I don’t think she finished it, but still: This is someone who wasn’t just a parishoner, but who actively pursued theological understanding, to some degree.

Now, she’s puzzled that God doesn’t fix what’s wrong with her 87 year-old husband, because she’s asking REALLY HARD AND A LOT.

It would be senseless and cruel to get into this with her. In the years when she had the wherewithal for the conversation, she was a critical and judging person with whom discussion would have been pointless. Now that she’s more agreeable, she hasn’t the brain power.

I just can’t help but wonder what the human condition could be if some of the energy that goes into pleading for divine guidance were directed instead into action here on Earth. Yes, I know that’s flawed reasoning… “energy” isn’t finite and you can pray and act, both. But still. Still.

Out to Lunch

Mom: What’s the special?

Me, reading: Tuna salad on toasted rye bread with melted pepper jack cheese, sour cream, and pico de gallo. It comes with french fries, onion rings, or cole slaw.

Mom: No, thank you, that’s what I had for breakfast.


Mom: What did I have for dessert the last time we were here?

Dad: Tiramisu.

Mom: What is that?

Me: A layered dessert with coffee-soaked sponge cake, mascarpone cheese whipped with eggs and sugar, and powdered chocolate.

Mom: What is that?

Dad: Tiramisu.

Mom: Have I had that before?

Humblebrag?

I was in a department store check-out line today, with the rest of New England, buying a present for Robin from my parents. There was general chit-chat about how everyone is getting through the holidays — a conversation I’d started by asking the woman behind the counter how she was holding up, and she just shaking her head.

The lady behind me got going on and on about how materialistic her daughter is. It’s all about what she’s getting, she said. She demands to know on a daily basis what items from her list have been purchased already. All she cares about is her presents. She’s addicted to shopping and all she wants in life is to buy things.

Even the young woman behind the counter was all like, “Lady, then you are not helping her by being here. You should get her NOTHING.”

And I did not ask this mother, “how have you managed to raise such a complete little shit?”

But I did say, “Wow. That seems to be a bullet we dodged, at our house.”

“Oh, then you have boys?” Nope.

“Oh, well then they’re not teenagers?” Actually yes.

“Oh. Well mine is just addicted to shopping. Wait till she finds out you have to pay rent and buy groceries too.” How old is she? “25.”

Lady, if my kid ever behaved like you’ve just admitted to a total stranger that yours does as a young adult, I would make a donation in her name to the International Rescue Committee, then write her a card expressing hope for her to become a better person and strongly suggesting that she never again give me a wish list of any kind, ever.

Merry Christmas.

What to do about anger?

I can’t bear to go through all the details of yesterday’s phone call to Mom. Suffice to say that it contained all the usual elements:

  • She was still asleep when I called in late morning.
  • She’d just woken up when I called again at noon.
  • She said back pain kept her up all night.
  • She didn’t know what day it is, and didn’t remember when I told her. Not the first time, not the 8th.
  • She was confused by the number of pills in her box, reporting 4 when there ought to have been 6 1/2. She said today’s compartment was empty, then said it did have pills in it, but not enough. She asked why Wednesday has no pills at all and what will she do then, not remembering that I’ll be back to refill the box. This exchange was repeated at least four times.

In a new twist, she took my Dad’s pills instead of her own, even though her pill box is bright purple, chosen specifically to be very distinct from Dad’s. At least that explains there only being 4 pills. (Fortunately Dad’s were only supplements; he keeps the important stuff separate.) Then she realized her error and took her own, of which there were 6 1/2, as I’d been saying all along (this is now 45 minutes into the call). She said she had been confused and in a rush because I was coming. I was never coming, and had never said I was coming, and it wouldn’t have been a reason to rush, in any case.

This is what dementia sounds like. Nothing she says can be trusted to have any consistent or correlative relationship to reality. When a normal person gets “confused,” they can be set straight. Oh, right, they’ll say. I was just confused. When a dementia patient is confused, talking them through it is like screwing yourself deeper and deeper into the marsh mud at low tide. Then the tide comes in.

All this happened while Robin and I were on the way from shopping to my friend Jolene’s house. We had the Corolla, because Aaron has “my” minivan up in New Hampshire for the weekend. I hate this reliable little car with the intensity of a thousand suns. It’s ugly, uncomfortable, cramped, loud, dirty (Aaron cares much less about keeping it clean than I do), and lacks Bluetooth. The minivan is not a luxury vehicle by any means, but neither is it any of those things, and Bluetooth makes phone calls so much safer and easier.

Robin and I had had an unsuccessful time shopping and were dashing back to pick up Jolene’s son, who’d be spending the afternoon at our house while she worked. I was cranky about the shopping trip. I was cranky about the car. I was cranky about having agreed to have a friend over. I had a headache and the beginnings of cramps. And then I had this hour-long conversation which made no fucking sense, and which, if I could have typed out a transcript, you would not even believe.

When we signed off, I screamed — screamed! — in frustration. Poor Robin. I told her that if I ever begin to do this kind of thing to her, that she should kill me. That, well, ok, obviously she could not be expected to kill me, but she should put me in a home and then move as far away as fucking possible and never look back. I will not allow her life to be sucked up by this kind of thing. I will not allow it. I will NOT.

It was at about that point that I realized my phone had not, in fact, hung up. I had thrown it into the passenger foot well when I said good-bye, but hadn’t disconnected. It is possible that my Dad–it was he on the phone at the end of the conversation–heard my whole poisonous, insane, horrible rant.

I understand that dementia is not my mother’s fault. I understand that being angry about it is normal (and so does Robin. She is a tremendous comfort). I try to keep anger about her illness from becoming anger at her for not being able to think and anger at my Dad for not being more managerial about it (he is blind, yes, but he can think, and he knows what fucking day it is, and he could help with the medicine thing).

It can feel like a lot of anger, which has never been my strong suit.

We got to Jolene’s house, and she asked how I was, and for once, I didn’t turn back the attention and say “fine, you?” I just laid it out. Empty. I’m running on empty. My parents have sucked me dry today and I have nothing left except feeling angry all the time. She listened, and she helped, and it was so good to have a friend in that moment that the stupid aggravations evaporated and the serious issues receded.

Having Josh over was fun. He and the girls played Clue, had a soccer ball punting contest in the backyard, played Wii, and watched Sherlock. Meanwhile I called my parents again, prepared to face their reaction to what they might have overheard earlier. They never mentioned it, and nothing in their demeanor suggested they heard any of it. Jolene said they had probably just put their phone right down after saying good-bye. If they heard anything at all it would only have been car noise from where my phone had lain on the floor. I’m going to assume, with relief, that she’s right.

After Jolene finished work, we all went out to dinner and talked about other things. My friends are terrific, and my girls are terrific, and I’m feeling better.

I’m still wondering what people do with their anger, though. I’m open to suggestions.