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.

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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.

In which I confirm my existence

Well, six months went by in a flash.

All is mostly well.

I’d been writing here to document my “sandwich generation” experience, sharing the humor as well as the trials and tribulations that come with having a parent with dementia. While things are still humorous (it’s life!) we did have some more on the trials and tribulations end of the scale this fall.

For one thing, there was a mishap in Mom’s kitchen. For reasons unknown, she got up at 4:30 one Thursday morning and put a plastic tray on the stove. Dad awoke to the smoke detector half an hour later. They got the stove turned off and the smoke aired out. Mom went back to bed.

Dad called her neurologist’s office, thinking that surely her medication could be adjusted, or there would be something else the doctor could do that would prevent this ever happening again. (I don’t think he’s quite come to terms with the fact that things are going to get worse.) They played phone tag that day and the next, and he became increasingly frustrated. Friday evening he called me in a total fit because he couldn’t get the answering machine to work. I said I’d bring the girls over for dinner and fix it.

We arrived with pizza in hand to find the kitchen and some of the rest of the house coated with greasy black soot. He’d told me nothing about the kitchen incident — I thought I was going to solve the answering machine problem. I would never have brought the girls, let alone food, into that setting had I known.

Josie’s eyes got huge and filled with tears. “I don’t like this, Mommy. There is something wrong here and I’m scared.” Robin went instantly into “cope” mode, in which she is totally amazing. She comforted her sister, found a relatively clean place for us to eat, loaded and ran the dishwasher.

Meanwhile I pieced together the story from Dad, and went in to the bedroom to talk to Mom about it. “Mom,” I said. “You had a lot of smoke in the kitchen, I see.”

Her response? “Really? Wow!” And, later, “am I supposed to be feeling somehow responsible for this?” (Days later, to me, “you know, your father hasn’t been himself lately. I think he had something to do with what happened in the kitchen.” If by that you mean saving things from being much worse, Mom, then yes. Yes, he did.)

Long, long story short: the house was cleaned by specially trained professionals in a process that took two weeks. The stove could not be salvaged. Insurance company hassles were minimal, but not zero.

Also: my mother has been admonished by her doctor not to consume a bottle of Chardonnay along with her medication in the evenings. This falls in the category of “things you don’t think you’d have to say out loud,” but evidently it was necessary. She’s been pretty good about it since, as far as I know.

Rick and I are doing our utmost to convince them to sell their house and move to an assisted living community. Stay tuned.

 

Baselines

A friend joked with her forgetful mother on Facebook. She said, “how will we know it’s Alzheimer’s, Mom, if this is the baseline? LOL!” Good-natured family banter ensued.

I thought about my own mother, and her diagnosis of Lewy Body Dementia. Mom’s diagnosis was an aha! moment. A lot of things made sense in retrospect. Now I know why she was so extraordinarily hostile and disoriented after surgeries. Now I understand why she insists she hears neighbors talking about her, and says such hateful things about them.

But what about the behaviors that have always been? Rick and I shake our heads over this sometimes. How could we know it’s dementia, if this is the baseline? Our mother has always been kind of dopey when it comes to anything managerial. She’s always been self-centered and lazy. She’s never been great with the truth. She’s oddly dismissive of Rick to this day — he doesn’t even take it personally anymore. She’s always said mean things about neighbors, and been critical of our friends to the point of embarrassing rudeness. (These days I just tell people ahead of time to be prepared. When it happens, they sort of blink in astonishment, then remember I’d warned them, and don’t experience it as a direct hit. Later I say, “told ya.”)

Maybe — especially if you can’t imagine saying such things about your own mother, or if your mother has passed on and you’d give anything for more time together — you’re thinking I’m being too hard on her. Maybe you’ve met Mom and think she’s a lovely person, which she can certainly be. There are people she doesn’t cut down behind their backs. I might even be one of them. (When people say to her “you’re lucky to have such a great daughter so close by,” she says “It’s not luck. It’s management.”)

I try not to be hard on my mother for the hollow satisfaction of it, but I don’t feel inclined to make excuses for her, either. She’s got that part covered. A very indulgent therapist in the 1980s encouraged her to “set aside feelings of inadequacy and guilt.” At the time, I would have preferred she focus on being less inadequate and guilty, but what did I know. I was a child, and some of her inadequacy and guilt affected me in ways I am just beginning to understand, as a mother of daughters myself.

My daughters’ childhoods are several orders of magnitude happier than mine was. Maybe mine was several orders of magnitude happier than my mother’s, and maybe with more insight, I’d achieve a gentler mindset. As truth-challenged as she is, there’s no point in asking for it. I piece together clues as they come.

Sometimes, when the clues make me realize, deduce or remember things about my childhood, I am furious anew. I am nowhere near being able to write about what these things are. But what do people do, with anger at their mothers? When they realize, as parents themselves, how much power there is in that role? When they look back on parts of their childhoods and think, how could you. How could you?

Probably, they see therapists.

I am always heartened to see women hanging out with their moms, each enjoying the other’s company. It shows that it’s possible. It means everything to me that my daughters and I should have that when they are grown women as well. I tell them I’m not perfect and try to own and improve on my shortcomings (except for swearing. I can’t seem to clear that particular hurdle). I include in our “prayers” every night a request to the Universe for help being a good mother to them, because they deserve the best mother I can be. They deserve it.

Only my mother knows whether she was the best mother she could be. I seem to have turned out all right, even if sometimes I feel broken (and I don’t imagine many people get through this life without feeling that way sometimes). I don’t hate her for her limitations, but I don’t have to respect her for how she’s addressed them, either.

And now, it’s hard to know where her personality leaves off and Lewy Body Dementia begins, which is both funny and sad.

Hey, I was going to eat that (in 2001).

Today, I decided to use a few extra moments at my parents’ house to check out their refrigerator. I do that from time to time to keep them from eating food that might kill them. I never know what I’m going to find, or whether it’s going to ooze out onto the kitchen floor under its own power. It worries me that Dad, who can’t see, won’t know the difference between a new tub of macaroni salad and one from, say, last August, until it is too late.

We could chalk it up to my mother’s dementia, but Rick and I can both remember looking in the fridge as kids and seeing cases of Tab and Fresca (remember Tab and Fresca?), but no milk. Tubes of slice-and-bake cookie dough, but crispers full of rotting vegetables. Deli drawers from which the safest bet was individually wrapped slices of “American cheese product,” because in my mother’s kitchen, preservatives are your allies and pasteurization is your friend.

After scanning for invasive species growing on the items on the main shelves, I turned my attention to the bottom shelf of the fridge door. (It’s a side-by-side model, and it’s been years since any effort was made to access things below hip level.)

Nothing I found was younger than 2007. The median expiration date was probably 2003. For those playing along at home, here’s what I threw out: a big bottle of Bloody Mary mix, two open jars of shrimp cocktail sauce, two open bottles of hot sauce, one jar of withered capers and another of rancid pine nuts, two open bottles of lemon juice and two of lime juice, and a near-empty bottle of balsamic vinegar. Dumping all that stuff down their garbage disposal was really, really satisfying. So satisfying that I don’t mind filling up my own recycling bins with the huge bag of jars and bottles I brought home.

It’s no mystery why, in my own home, I am pretty vigilant about what’s in the fridge and when it needs replacing. There are never two of the same thing open at the same time, and all the condiments are from the current decade. When we use something up, its replacement gets brought up from the pantry and it goes on the shopping list so the pantry item will be replaced. As long as people put things on the list, the system runs like clockwork. Sometimes they put olives on the list right after I’ve bought olives, just to plague me, because I hate olives. But other than that, clockwork.

Now please excuse me while I go check my pine nuts.

In which Dad has a mini-stroke, and we go to the hospital.

We had a bit of Emergency Room excitement in the family last Saturday.

My brother Rick was up for a visit, and we were with friends at a comedy night to benefit the terrific After Prom event that the high school PTA puts on here in Sandwich. The comedian had just wrapped up his set of relatable, parent-friendly jokes and I was just about to enjoy a rare second drink when my phone buzzed: Mom and Dad. I missed the call but hustled out to catch the voicemail, by which time Robin, my 12 year-old, was rapid-fire texting from home:

u need 2 call grandma

she thinks grandad had stroke

he can’t talk and can’t get up

i don’t know what to do

i told her call ambulance

I called Mom and we got the ambulance on its way. Headed back into the building and signaled Rick we had to leave immediately – some quick words to friends, and we were off. Called Robin to say we’d be home late, and that she was so, so right and smart for telling Grandma to call 911. (My god, I’m proud of that kid. She took a frightening call, but she’s as level-headed as any grownup and significantly more so than her poor Grandma.)

When we caught up with Dad at the hospital, his symptoms had somewhat abated. He had tests, and we waited around, unable to keep our eyes open, unable to sleep. Saturday night in the emergency room is eventful. I couldn’t help wondering what was up with the terrified young couple clinging to each other in the space next to Dad’s. Then there was an urgent call for Narcan.

At some point, my mother, fed up of waiting for news and getting ready to start snapping at nurses and aides, turned to Rick and said “this is the worst part.” “No, Mom,” he said. “The worst part is that Dad is suffering.” I wish I could say it is dementia that makes her lose perspective, but her own status has always been front and center for her.

Eventually Dad was admitted for observation and further testing. We returned Mom home and got to bed about 4:00 Sunday morning.

Dad spent a couple days being examined. It is especially frustrating for him to be in hospital, because he is almost totally blind, and his hearing isn’t great. I’ve observed over the years that there are some people who intuitively do well interacting with a blind person, and many more that don’t seem to have a sense of how to be helpful (or an inclination to be). The proportion appears to be about the same among nurses as in the general population. I’m always very grateful when someone is assigned to him who really understands that activities need to be narrated, and clearly, because it’s so frustrating for him to know something’s happening around him and not be told what it is. That said, everyone was pretty great this time around.

Discharge day was sort of a comedy of errors. The hospital had lost his pants, which had somehow never made it up from the ER. I called Mom, who by noon had bothered neither to dress nor have breakfast, so couldn’t leave to come get him for at least an hour later than we’d hoped. His pants turned up and we waited for her. Then she drained her car battery to zero by sitting at the wrong hospital entrance for another hour with everything running but the engine (where was her cell phone? at home, on the counter).

Anyway, he’s home again. It turns out that neither the CT scan nor the MRI showed evidence of stroke; yet, classic stroke symptoms did occur. Doctors conclude that he likely had a “mini-stroke,” but that even so, there’s nothing different that would be recommended medically to address it. I wish I could say he’s himself again, but whatever this episode was has taken a toll. He seems disoriented and foggy and confused.

On the other hand, he has resumed his obsession with light bulbs, so maybe all is not lost.