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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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.

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.

Dementia update: hallucinations and loss of license.

Life would be a lot easier if Lewy Body Dementia were just a memory disorder. Unfortunately, it’s that and a whole lot more.

My mother suffers from auditory hallucinations. It is no use explaining to her that the voices she hears can’t possibly be real. They are real to her because she hears them, and she’s lost the ability to distinguish what makes sense from what doesn’t.

The voices are evil. They taunt her while she’s undressing, and when she’s using the bathroom. They threaten gruesome violence to her and my Dad. They threaten to kill me and my children. They tell her in detail how they’ll do these things. I’ve read most of Stephen King’s stories over the years, and the voices would give him a run for his money. And that’s just the stuff she tells me about.

I wonder where the horror comes from, and I imagine how different things would be for her if the voices were kind, positive and fun.

The inability to distinguish hallucination from reality is a problem. Even if she does sometimes grasp that the voices are just in her head, she still thinks her neighbors are bad people. One’s been in jail for years, another’s a drunk whose husband has left her, etc., etc., none of it true. She thinks one neighbor’s son “killed his gay lover in their backyard.” In reality, he’s studying to be a priest. Not that those things are mutually exclusive, but near as I can tell, her neighbors are just people.

Sometimes, she calls the police about the things the voices say. This has consequences. One morning recently, she “heard” a federal agent driving around with a megaphone, calling all law-abiding residents to a meeting at the police station to discuss what to do about people from the Black Lives Matter movement who have been terrorizing the neighborhood. She told my Dad, who said “it isn’t real! Stay home! Don’t go to the police station!”

So she went to the police station. Naturally none of her neighbors was there. Still, she went in and told an officer that “Black Lives Matter people are threatening to teach the neighborhood a lesson.” When the officer later called me to discuss her visit, he said that she then left in a paranoid hurry because “they probably know I’m here.” He followed her home to see that she was all right.

He interviewed neighbors, reviewed previous incident reports, drew some conclusions. Then he went back and filed a report with the Department of Motor Vehicles that resulted in my mother’s driver’s license having to be surrendered. She got a letter from the DMV saying she should send it in voluntarily within 20 days, or the police would take it.

I have no quarrel whatsoever with the outcome, but mixed feelings about how it came about. The letter was a complete surprise to my parents, and to my mind, it would have been more respectful of the officer not to have done it behind their backs. I asked Officer Vigilant how her driving was as he followed her home, and he said “Fine. Quite good, actually,” so his decision was entirely based on her mental state, which is interesting.

She was mostly a bad driver, though. Dementia just meant that in addition to pulling out in front of people and doing 50 mph in the passing lane, she’d forget where she was going or where she’d been, and maybe get lost. It’s a good idea all round to have her off the road.

She did call her attorney, outraged, to see if anything could be done. The attorney called her dementia doctor, who said no, he was not willing to object in any way to the revocation of her license. Patients do get angry with him for that, he told us at her next visit, but stopping driving is the right thing to do. Then he increased her dosage of quetiapine again, which should keep her racist, paranoid hallucinations away a while longer. I hope it works.

Mom’s not being able to drive changes her life less than you might imagine. She uses a grocery delivery service and rarely went out anymore, anyway. For me, it means more frequent visits, which were already happening for various reasons, and driving her and Dad to their doctors’ appointments, which I was mostly doing anyway.

Hopefully, it is also fueling motivation to look into assisted living. That’s becoming a battle, of which more later.