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, I had to pass up an available room. A couple of weeks later Mom was feeling up to looking at it herself, so Robin and I brought her there for the day. I thought she would have mixed feelings, but she liked it, and even said we should leave a deposit! By this time I was confident I should not let the opportunity pass by.

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 fifteen 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 the house in Chatham that was my parents’, 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 decision.

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.

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.

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.

Oh, her aching back (no, really)

My mother suffers substantially from back pain. Over the last decade she’s had two spinal fusion surgeries and a hip replacement. We didn’t know about her dementia before the surgeries, but looking back I know she was distinctly worse after each one. Her immediate recovery periods were always nightmarish, and each time seemed to diminish her permanently.

It was after one of those surgeries that my father confessed to me his worry that she hadn’t been paying the bills. (Blind, he couldn’t pay them or verify her payment of them on his own.) He handed me a briefcase with the entire contents of her desk in it and we sat up till the wee hours sorting through stuff. That’s when I took over the bill paying. Diagnosis followed not long after. It’s been almost 5 years now.

At any rate, the pain has been ramping up again over the past year. Nobody thinks she can undergo another surgery. She’s been seeing a physiologist at Spaulding, who today performed a radiofrequency ablation procedure which will, we hope, deaden the nerve that is hurting her. It would be so great if it worked. Mom’s concentration is flighty enough; the pain makes it so she can’t tolerate standing for long, and you just know she isn’t listening to anything that’s said half the time because she’s distracted by how much she hurts.

So, we desperately want this to succeed.

She arrived for her procedure this morning in the car of a kind volunteer who drove her from Chatham so that I wouldn’t have to do two round trips. I met her at the door, and we checked in. She was absolutely calm (thank you Ativan — and thank goodness she managed to save the last two little pills for today.) The doctor’s assistant wheeled her away, and I headed to the cafeteria to sit with a coffee and go through my “Mom & Dad” binder, culling out of date papers.

I had a nice visit with a friend who works there. We talked about the mixed pride and heartbreak of sending a kid to college. I told her all the Facebook pictures of friends’ new college students are breaking my heart, as I’m half wrecked because my eldest just started high school and she STILL LIVES IN MY HOUSE. I am risking my Spock-like reputation by confessing to these things, but I do.

I saw my daughters’ 2nd grade teacher, since retired, a really great person who lost her son to addiction last year and somehow still puts one foot in front of the other.

I saw the physical therapist who told me I had an attitude problem when I said it would be nice to be done with the the pain in my shoulder for which I went to see her for help some weeks ago. We ignored each other with no love lost. That remark of hers still makes me angry whenever I recall it. The day she said that, I should have cancelled all the rest of my appointments.

Her assistant passed by and was lovely, though.

So 45 minutes went quickly by, and then Mom was asking for me in the recovery room. Her procedure reportedly went well. She was reclining next to a pile of snack wrappers. She’d eaten all the Lorna Doones and half the Ritz peanut butter crackers and was struggling to unwrap the Fig Newtons. This was not a procedure she’d had to fast for, by the way. She asked me, “do you drive to an office somewhere for the program you’re on?” I had no idea what she meant. “For losing weight,” she said. “No Mom. I’m not on a program. I just quit eating bagels and muffins and cookies, and got serious about walking more often.” “Oh. Did you read about that in a magazine?” and so on, for the duration of the Fig Newtons. My 200 pound mother in a recliner shoving junk food in her face asking me how I lost 10 pounds.

I brought the car around, she was helped into it, and we headed home. I’d told Dad to expect us at about 11:00. When we got in, he was asleep, but he jumped up, shouting “IT’S ONLY 10:26!” “Hi, Dad. 10:56 I think.” Dad checks his talking watch. “Oh, 10:56. All right. Hello.” By this time Mom’s tired enough to assure him all went well and then go right to bed for a nap.

With Mom asleep, I have the opportunity to assess the status of the fridge and freezer. Peapod delivered groceries yesterday so they’re in good supply. Excellent supply, you could say. Mom had ordered four gallons of milk and 36 yogurts and 8 bags of croutons, among other things. Dad was concerned that he couldn’t distinguish the individual rice pudding cups from the individual yogurt cups. We determined that the rice pudding cups have a unique dimple on the bottom, solving that difficulty. One less thing. I don’t tell him about the rotten food that I’m hauling away. There’s nothing he can do about that.

Thus concluded today’s adventure. What I took away: 3 gallons of milk, 3 lbs chicken breast (Mom doesn’t cook but hasn’t stopped shopping as if she does), 3 bags frozen peas, 1 bag frozen corn, 1 loaf of raisin bread, 1 salad bowl. All this I can use. In other bags: 2 dozen frozen bananas that are too far gone even to use for banana bread, 4 bags of rotting baby carrots, one open can of pecan pieces, one open box of 5-year-old Fibre One cereal, one plastic container of an ancient unidentified granular substance, and 1 gray withered slice of pizza in a Ziploc bag that, thank God, stays closed. All this I throw away in public trash cans before I get home.

When I finally do get home, it’s 12:30, and I sit down to work. The summer lull is over and I have actual writing to do for actual money. I’d be in better shape to do that if it didn’t feel like I’ve done a full day’s work already.