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?

Medicinal Muddles

My mother’s memory troubles and general confusion have increased to the point where the possibility of her overdosing on her daily medicines is a constant worry.

Months ago, I wrote out a list of all her meds: brand name, generic name, dose, and purpose. She has handled this handwritten list so much that it is wearing thin. There are check marks penciled all over it. But this list was intended as a reference, not for checking off when pills were taken; a check mark on it is meaningless because it isn’t linked to any particular day.

I began to notice that she was needing refills of prescriptions about a week sooner than she should have run out. Then CVS said that insurance wouldn’t pay for a certain refill because it was too soon to fill, yet I couldn’t have her go without, so we paid full price for the anti-hallucination medicine.

Part of the problem is that she’s in such relentless back pain that she has a constant urge to take medicine to make the pain stop. There is no convincing her that hallucination medicine will not help her back pain.

Clearly Mom needed a way to remember whether she’s taken her pills. I tried to sell her on a pill organizer. She declined, saying the idea depressed her. I told her that I use one myself because the motions of taking medicine are so much the same, and the routine so mindless, that soon after I’ve done it, I can’t reliably say if I did it that day or if I’m remembering the day before. You don’t have to have dementia to forget this kind of thing! But no, she insisted, she wanted to stick with the pill bottles and a checklist.

So I devised several candidates for checklists, some from templates and some from scratch based on observations and guesses about what might work. She rejected all of them. Unchecked boxes were intimidating, and I think sharp black-on-white printouts made her nervous. I know that doesn’t make sense. But I started to notice that my computer-printed efforts stressed her out just to look at, no matter how simple and full of white space I made them, whereas she loves the handwritten page.

This makes me wonder if, in our later years, as our minds fail us, people all try to revert to the forms of communication we liked most during our lives. Handwriting on paper would definitely be the thing, in Mom’s case. It’s an unanswered question, because it’s only in the last few decades that these forms have changed as fast as they do now. But the rate of change increases all the time, so I wonder how it will play out, and if anyone is studying it in a gerontology program somewhere. I hope I’ll be able to keep up, but I picture myself pining for Excel spreadsheets long after there’s no longer any such thing, and I’m so fond of texting that I wonder if I’ll be able to adjust to whatever replaces it. I don’t know. If my giant paper calendar (color coded for each family member, natch) is any indication, I might have some trouble. (People used to see it and say “I like paper better, too.” Now they just say “oh, wow.”)

But I digress.

I now have Mom using a pill organizer with big compartments labeled S M T W TH F S. Every visit, I refill the compartments for the days ahead. At first, I’d look at the pill compartments and half of them would be empty and the other half filled with Advil. She would insist that she hadn’t taken any more pills than were in the box, and I would say but Mom, they’re gone, so where else did they go? I wanted to hire an aide, but she asked for “one more chance to get it right.”

We’ve compromised. I now call her every day to say it’s time to take the pills in that day’s compartment. She puts the phone down to get some water, and says OK, now what? and I tell her what compartment to open, and she counts the pills and describes them and asks is that right? and I say yes (with no small relief), and she takes them. Every day she asks me why she has no pills in the empty compartments, and I tell her it’s because she already took those. Every day she asks what happens when she runs out, and I tell her I will be back to refill the compartments.

This is working, at least temporarily. Someday she will have to have an aide come in every day to be sure she has taken her meds.

You may be wondering how Dad does. Turns out for managing medications, it’s more important to be able to think than to see, so he’s actually OK on this front. He keeps his meds in a kitchen drawer. One bottle has tape around the top, and one has a rubber band around the middle, and one is unaltered. He knows which is which and how much to take from each bottle, and I refill the bottles when he’s running low.

There are workarounds for blindness, as awful as it is. This slow, relentless failing of the mind, though? All we have are temporary patches to a system that is doomed to fall apart completely.

Haircuts

I took my parents to get their hair cut.

Mom used to go to a salon in Hyannis, but missed several appointments and is no longer welcome there. She didn’t appreciate that not showing up meant loss of income to her stylist, who sent a very gracious note wishing Mom well and explaining that she couldn’t accommodate those losses anymore.

Unwilling to visit a less posh salon closer to home, Mom didn’t get her hair cut for almost a year after that (don’t look at me, this is while she still had her driver’s license). Meanwhile, Dad was seeing his regular person, Tammy, just 10 minutes away.

Getting Dad from place to place can be quite a production. Eighty-six and blind, he doesn’t make quick strides, and he’s very easily startled by changes underfoot. From car to building, he has cane in one hand, me in the other; I’ve got him on one arm and everything else over the other shoulder. If it’s raining, add an umbrella. We shuffle along. It’s nice when someone holds a door.

When I first brought Dad to Tammy after Mom stopped driving, she came right to the door, opened it wide and swept him away as smoothly as you please. She offered just the right guidance and spoke at just the right volume about just the right things. And my Dad sat right down in her chair and proceeded to tell her All About It. They had a great time and I was so happily unnecessary it brought tears to my eyes. He came home looking handsome and feeling great. I tipped her exorbitantly.

Mom, in desperation, now agreed to see Tammy as well. I scheduled a midday appointment to get them both taken care of and me back to Sandwich in time for Robin’s volleyball game. Win-win (and-hopefully-win).

They were getting dressed when I arrived to pick them up. Dad needed help with small, stiff shirt buttons. He was mad that he couldn’t do them. I said “Dad, maybe you need to start wearing rugby shirts!” I was not entirely serious. However he is now obsessed with the idea of a rugby shirt, and I know what to get him for Christmas.

Sad news at the salon: Tammy was out due to injury. Rather than call to reschedule, the salon people had figured other stylists could fill in. This made me nervous and a bit resentful. Tammy is the whole point of that place. It’s not so great without her.

Stylists were hanging around discussing lunch orders, but Dad’s designated stand-in wasn’t even in the building. We were told she was delayed due to “the weather” (light rain). We waited. When she arrived and was asked if she wanted something from the cafe, she said “no, I picked up something on the way.” I think she realized mid-sentence how that came across.

A mystery: The ladies’ room in this place has no dryer or towels, so the inside door handle is always wet. But there’s a roll of paper towels on a table ten feet down the hall.

More mysteries: There is a lot of weird shit for sale crammed into the waiting area. Here is a partial list:

  • cocktail forks
  • a blouse
  • an electric egg cooker
  • a book by Dr. Phil
  • scented candles
  • a pair of metallic sandals
  • orange silicone kitchen utensils
  • loose tea
  • a scarf
  • Christmas ornaments (or fall? are fall ornaments a thing?)
  • a sequined black sweatshirt
  • an elaborately framed print of Cavalry, by Octavio Ocampo, which is a pretty creepy work of art no matter how you frame it.

It’s like that game where you look at a random assortment of items on a tray, and then someone takes away the tray and you have to list as many of the items as you can remember.

I’m in a constant state of low-grade confusion and irritability in this place. Why aren’t the paper towels in the bathroom? Where does all this crap come from and who would buy it? Where is the lady who’s going to cut my Dad’s hair? What is that other lady doing to my mother and how soon will it be before Mom starts saying things we will all regret? Why is all of this taking so long?

An hour and a half later, Mom had something like a bowl cut. Dad’s was better. Mom was persuaded to buy expensive tea tree shampoo to treat something on her scalp that I suspect would not exist if she shampooed more often. She was instructed not to use the expensive tea tree shampoo every day. That is not going to be an issue.

I’d thought we might go to lunch, but I was so fried that I just brought them home, paid the bills, brought in the mail, the newspapers and the garbage bin, consolidated some of Dad’s medicines in bottles he has marked in various ways to know by touch what they are, and set up Mom’s medications for the week ahead.

What I took away: Mom’s 2015 appointment calendar, with about 8 pounds of paper scraps tucked into it that I will scan through to be sure don’t include any legal documents (the car registration is MIA, for one thing); three catalogs to call and get her off their mailing list, again.

Another visit done.

I did make it to Robin’s game: a victory that left her in a fabulous mood all evening.