LifePundit

Heart Failure, Alzheimer's and Acne

I feel like getting under the bed. This morning I took my father to his doctor who was amazed that my father has rebounded and stabilized -- not currently in heart failure. Of course my father was surprised to hear that he'd ever been in heart failure. I think he thought heart failure equals a heart attack. The doctor made the remark that attitude and will have a lot to do with survival for old people and people with cancer. My father has even gained five pounds and his bloodwork, etc. was great. So that was good, though my father complained that he's too tired to work out and that he didn't think what he was doing for strength training was working.

The last time I went to visit my father I found him doing laps with his walker in the parking lot. He was about to keel over, but he was doing laps.

My father complained to the doctor that he couldn't walk very far anymore. The doctor said, "You should be grateful for whatever distance you can walk." That doesn't compute with my father. The doctor said, "You look great. There's no change."

My father said, "That's terrible. I want to get better." He doesn't know that the doctor predicted over a year ago that my father wouldn't live until 7/07. He still believes he can get better and that the power is in his hands, if only he would work out more. I wish I had those genes, or those delusions.

My father insisted that we go to the hospice meeting early so I could practice being early (enough already!). We sat in the car and drank Cokes and talked. The meeting turned out to be very important. Those hospice people (a Lutheran group) are really wonderful. My father, the activist, had decided that since my mother's teeth hurt (they are falling apart -- I understand that sometimes happens at her age -- I mean, you go there one day and the tooth that was there the day before has broken off. It's quite shocking.) My mother is on painkillers for it as the goal right now is for her to be at peace and not hurting. Anyway, my father has decided that my mother needs all kinds of dental work. He's been agitating about it so much that he found a dentist to come in to do it. Hospice informed us of the risks and probable lack of benefits. They brought in their doctor to talk to us about it. Saintly Brother and I put the brakes on this scheduled tooth pulling (Non-Saintly Brother wasn't there, though I saw him in traffic later). We'll meet with the dentist and the social worker next week to see if Mama is (1) in pain that needs different treatment and (2) what on earth is the plan here?

Then I had to rush to take Lily to the dermatologist. For acne.

Whiplash here in the sandwich generation. But all are getting good care and sometimes that's the best you could possibly wish for.

How Many Places Should I Set for Dinner?

I don't often write about my mother because, though she is still here, Alzheimer's took her from us years ago. Which is not to say that somewhere in there isn't a bit of my mother left. I can see her when she smiles, or squeezes my hand, or says some automatic phrase even though she might not remember who I am.

My mother was raised on a farm in Kershaw County, S.C., during the Depression. She never learned to swim or ride a bike, but she could ring a chicken's neck one-handed (fortunately I never saw this) and cook, can or preserve any food you could grow. She skipped a grade in school but she wasn't able to go to college. She was unfailingly kind and you'd have to get her in a corner to get her to say anything bad about anyone, even if they deserved it.

She never got a traffic ticket, and in contrast to my father, didn't do crazy, reckless things. It really bothered her when he did. She was a worrier. He gave her a lot to worry about. (By the way, she never once signed a release form for my riding lessons. That left me to do a lot of dancing around and somehow the instructors let me keep riding.)

One day when we were at Holden Beach Non-Saintly Brother, who was an adult living with them, brought a Laser sailboat, which is one of those small sailboats where you get wet. My father hadn't sailed since WWII and Non-Saintly Brother wanted to take him out for a sail. My father wouldn't do it.

So, when no one was looking, my father snuck off in the sailboat. (He hadn't wanted to go with Non-Saintly Brother because he didn't want anyone to tell him what to do.) He sailed off into the ocean. I don't even think he had a life jacket. He got pretty far out and while we watched, capsized. He tried and tried to right the boat. But in the decades since he'd sailed in WWII and that day, a new kind of fastener had been developed for the ropes, and my father didn't know how to get it un-done. The sail stayed taut so that every time my father stood on the rudder to right the boat, the sail countered by scooping up half the Atlantic Ocean. Finally, he gave up. We saw him sitting on the hull of the boat, floating in the ocean. I don't have a photo, but imagine this one. Without the rescue boat. In deep water, a mere speck in the distance. The summer that the "Jaws" movie came out.

So now it was time for Non-Saintly Brother and my then-boyfriend, who was also a sailor, to swim out through all kinds of imaginary great white sharks to save my father.

My boyfriend was scared off by the little fishes jumping around him. "I could only figure that something was after them, and I was afraid it would come after me." (Note: Old boyfriend is now well-known environmentalist.) So he swam back. Non-Saintly Brother continued his swim out into the ocean.

It was lunchtime. My mother had cooked everything and was setting the table. My father was pretty far out. Non-Saintly Brother was not an athlete, yet he was swimming farther into the ocean. There were no lifeguards on anything on this beach and not many people around. It was a tense moment.

Mama turned to me and said, "How many places do you think I need to set for dinner?"

Valentine's Day in the Alzheimer's Unit

I've got one project to finish this morning then I'm going to visit my parents since I'll be at a meeting downtown later this morning and it won't be too far to go. I got my father to agree to stay home today so that I can see him. I think it was a big sacrifice for him to stay in assisted living rather than go to the garden, but also possibly a relief because he doesn't have to push himself beyond what it takes to make himself sit still, which is probably a big push.

One day he called Non-Saintly Brother and said, "Send somebody up here to get me. Nothing up here but a bunch of old people dying."

So as I get ready to go visit him and Mama, I've been thinking about what I should take them. Valentine's ought to make that easy, but my father can't taste so nothing tastes right (great -- I'm taking him out to lunch) and my mother's eating has gotten so iffy that I'm afraid she'll choke on candy. I guess I'll get flowers, though every time I take them to my father he oohs and aaahs and says nobody likes flowers more than him, then a day later he'll feel guilty for having all that goodness to himself and will put them on the receptionist's desk. Which is okay, too. Sometimes Mama notices flowers. Sometimes not.

Last year at Valentine's my mother was in the Alzheimer's unit and I took her candy in a heart-shaped box, which she didn't care for at the time. When you go visit the Alzheimer's unit, the most important thing you need to bring is your sense of humor. There was an extremely active resident, whom I'll called the Escapist Lady, who was always dressed up and looked like she was just a visitor. She even carried her pocketbook. She frequently slipped out, so they had to put a bracelet on her that would sound whenever she got near the door. Part of the reason she escaped was that she would persuade other visitors that she was just visiting somebody and needed to get outside for her son to pick her up. So they'd let her out.

I had to be careful when I visited Mama that I didn't give the Escapist Lady too much attention and upset Mama. The Escapist was very friendly once intercepted me before I could get to Mama. She gave me a big hug and friendly greeting, and Mama was jealous that I hugged the Escapist before hugging Mama and things went downhill from there.

Anyway. Back to last year's Valentine's candy. Mama didn't have a taste for chocolates that day, so I took the unopened heart-shaped box and put it in drawer in Mama's room. I saw the Escapist, who has a ferocious sweet tooth, watching me. (We usually share what we've brought Mama -- with the permission of the attendants so we don't accidentally give a diabetic something they shouldn't have -- in fact, my father used to bring diabetic treats from time to time, so I know who has sweet tooths and Escapist Lady is insatiable -- and absolutely skinny from constantly pacing.) I noticed the Escapist going into Mama's room and I wondered about it. After Mama and I had finished our visit (she wasn't doing great that day), I took a look in her room. Yes, the Escapist Lady had been there. She'd removed the plastic wrap from the heart-shaped candy box and thrown it in the trashcan. And inside, there was nothing but brown candy wrappers -- she'd eaten every one. Then she put the box back in the drawer.

Oh well. At least somebody enjoyed them.

I just hope I can get my father to and from the restaurant today without him falling over. He won't let me help him and sways in all directions. He's supposed to be in a wheelchair but at least uses a walker. The oxygen tank is another challenge. I hover, and that makes him mad because he says I'm not strong enough to catch him, I get in his way and that he'll squash me if he falls. Better that than him hitting the floor. He no longer weighs enough to do much squashing, though he's certainly capable of making a big fuss.

It's Safe to Come Out Now

It's safe to come out now. Christmas is over. (Why do cats always hide under the tree? This is Izzie, the indoor cat. Pretend you can't see her, just in the spirit of the season.)

I loved every minute and hope you did, too. So much love. So much food. So much music. So much chocolate. God is good. (Theologically speaking, God would still be good even if he hadn't created chocolate, but the fact that he did tells us a lot about him.)

Here's Paul (my husband) with two treasures from his stocking. A pocket knife, which should go a long way toward helping him to become a Good Old Boy (he's a Yankee). And a potato, which I reminded him should be worn in the front of his pants, not the back.

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Actually, the potato is a different kind of addition to his manly arsenal. It's for the potato guns that Santa brought to each of them. Here they are in action. The smoke in the background is the smoking turkey, which Paul did and it was delicious. Plus we all get to smell like pioneers for a few days.

Santa (Lily) even picked out something special for Parker, the dog. He got a too realistic looking stuffed turkey and frolicked with it in the yard for hours, tail exuberantly wagging.

I even got chocolate in my stocking. Somebody really does love me.

My mother-in-law behaved, and I was full enough of goodwill to pretend I didn't hear everything she said or otherwise this post would be a rant. Easily triggered these days. Lily has a bad cold, so she could disappear at will and say she was resting. Paul had the turkey to tend to. And I had everything else, so I could be as busy as I needed to be. My father-in-law stayed in the kitchen with me and we had a nice visit.

I excused myself after dessert and went to see my mother, who is in the late stages of Alzheimer's. I found her dressed in a silky shirt and in a medical chair in the dayroom with the other residents. She looked good and was awake. "I'm Anne, your daughter," I said as I kissed her. She kissed me back. I could tell I may as well have announced that I was a seagull in from the coast.

"My daughter and son were already here," she said. I'm her only daughter. Somebody is showing up and I'm getting credit, for which I'm always grateful.

"I'm glad you had visitors. Here's a little Christmas something for you," I said, giving her a small but gaudily wrapped gift. My personal theory is that older eyes are weak and that bright colors are stimulating. (Just look at how some of them dress, if you don't believe me.)

"That's beautiful," she said, glowing. "I like all presents."

We literally talked nonsense, but she knew that someone who loved her was there and she was glad for the company. I rubbed her arm for a while in silence. In all likelihood, this is her last Christmas. I felt like it should feel important, moving, filled with meaning and symbols. Maybe it was. My mother was smiling for me, even if she didn't know who I was. I left and listened to beautiful music all the long drive home.

Lily and Paul were waiting for me. They knew who I was, and they were smiling anyway.

Christmas is wonderful. More wonderful still is when you are back home where you belong, with nothing left to do but love and be loved.

New Word for Dying: Transition

The good news: the hospice people said that Mama is in no pain and will be in no pain. They see her on-coming death as a natural process, which it is. But they have a new word for it: she's transitioning.

For people who are otherwise straightforward and truthful, I was having a little trouble following their conversation when they would mention Mama's "transition," until they used it in the context of her transition from this world to the next. That's a good way to look at it and it does make it easier on the family to think about Mama not dying but transitioning to the next, better world. Heaven.

I thought I'd heard all the euphemisms for death. This is a new one.

There was even some ambiguity. Maybe the transition was from the real world to the one in her head. They said she sleeps so much in part to block out what's going on around here. That sounds like depression to me, but I'm sure whatever she can do to escape the reality of Alzheimer's, such as sleeping so much, has to be a good place to go, whether it's a transition or a nap.

She's lost five pounds this month. She is still able to eat and swallow and engage in the sorry world around her. She needs to get out of bed once a day and sit up in order to keep her lungs clear and reduce the risk of blood clots.

After the meeting my father wanted to go to a hole-in-the-wall Thai restaurant he loves, so that's what we did. Then Saintly Brother took him out to the garden. My father has recently had 100 cabbage plants planted and other stuff I've lost count of. He's not transitioning nowhere.

No Time for Meetings

Lily's having exams, I'm trying to finish up two projects, and we're meeting again with hospice today to discuss Mama's descent into the later stages of Alzheimer's.

My father called this morning at 6:30. (When the phone rings early or late, you know it's him. He's always up.) "We've got that meeting to go to today," he said. "Always a meeting."

"I want to go to hear about how Mama is doing," I said.

"I know how Mama is doing. I don't need to go to a meeting," he said. "I don't have time for all these meetings." He has blueberry bushes to plant.

"Then don't go."

"Of course I'm going," he said. He also told me that he's sending out some men to get my manure. It's an awfully cold morning to be shoveling manure.

He sees Mama every day. He does know how she's doing. He may not know what's next and probably doesn't want to hear about it this morning. Neither do I, because we're not going to be told she's getting better. She's had shingles, she's got a catheter and they had to put mittens on her to keep her from pulling it out, and she quits eating from time to time. She stays in bed most of the time, but can make conversation that almost makes sense if you can get her to wake up.

It's all too real. But hospice is good at providing comfort to all of us, and I'm grateful for that.

Poor Mama

Today my father had a facial cancer removed for the third time (this time by some high-tech method where the growth pattern of the cancer was mapped -- I clearly don't know what I'm talking about but how many layers can you remove on your cheek skin before you get into the mouth?) There is talk of skin grafts. How much can an old man take?

Saintly Brother handled all the logistics and we got together for a quick lunch with my father after it was over, since he wasn't able to have breakfast beforehand. It even worked out that Lily could be there since she had just left her doctor's appointment and needed lunch before going back to school.

Then, before Saintly Brother even delivered our father back to assisted living, he got the phone call. Poor, poor Mama has shingles.

I'm sure there are ninety-eleven Psalms that cover this. One of the refrains is "How long, Oh Lord?" and another is "Why, Oh God?"

There must be a better way to die. Some disease where you see wondrous sights and hear beautiful music. Where you have no pain but feel like somebody is giving you a relaxing massage 24/7. Where your breath smells like roses and food tastes gourmet.

Before my great aunt died at age 103 she was perfectly lucid. Two weeks before she died, however, she began to see people no one else saw. Beautiful people who visited her and sat on her bed. No one else saw them, but she would describe them. I believe it was some kind of heavenly welcoming committee.

I can only hope that my mother sees beautiful people sitting on her bed, that they fill her room and possibly even sing. There's no reason to think so. She doesn't mention them, and she's not THAT out of it. How can you forget the things that are important to you, and be left in pain and misery? Alzheimer's is worse than forgetting. It's a fresh hell every day.

Hospice is a Real Blessing

I dreaded the meeting with hospice yesterday. It couldn't have gone better. There were tears -- and laughter. Good memories -- and good decisions. Mama will be getting extra help, comfort and attention. My father will receive the same because the hospice people will visit him every time they visit her, to update him and talk to him. He has already been grieving. Now his grief has an outlet, and not only has he begun the process of saying goodbye, he's also found a way to enjoy the time he spends with her. He can turn over some of his watchfulness to hospice and simply be present in the moment when he visits her.

There's a lot of smooching going on in the nursing home. My father called all excited last night because my mother kissed him three times last night. He's canceled his trip to the country today to spend the day with her. I hope they don't get in trouble for smooching too much.

The hospice people are gifted in what they do and I think they are there because it's their calling. We are using Lutheran Hospice (Saintly Brother is Lutheran), which is part of the Faith-Based Initiative that's somehow controversial.

What could possibly be controversial about people of faith, who have paid and paid and paid into the system, receiving comfort and emotional support as they ease from life to death from other people of faith? Who is better equipped to give comfort and support to people of faith than other people of faith, people who believe that a better life is yet to come? How does this diminish our country or infringe on the peace of non-believers?

I'm grateful that they are there. Beautiful, caring people who have the right words for hard times.

Meeting with Hospice

Lily is on a field trip to a barrier island education center (I would love to be with her -- there is no place I love better than the Southeast's barrier islands). It's good timing, because this is the week we meet with hospice about my mother's "progress" with Alzheimer's.

Mama has had Alzheimer's for nine years. She's been in clinical trials for new drug studies (over a year into it this study was canceled because they weren't seeing any benefit -- it was on whether or not anti-inflammatories improved Alzheimer's. I'm sure my mother was getting a placebo because her arthritis hurt worse during the study. I was glad when it ended so she could take her arthritis medicine.) She's also been on Aricept and something else to delay the progression of the disease. We were warned in the beginning that these medicines would delay the worsening of the disease, but when they no longer worked, the decline would happen even faster -- as though it was catching up for the delay caused by the meds. Mama seems to have hit that point of decline just a few months ago. She can't walk or feed herself. Sometimes she knows us. Sometimes she doesn't. She sleeps a lot and her digestive processes seem to be shutting down.

Last week the head nurse said it was time for hospice because Mama had quit eating. Since then, Mama has rebounded and is eating. She knew my father and gave him a kiss (he was as happy as a teenager who'd had his first kiss from the girl he's had a crush on for, in this case, over 70 years). She knew my Saintly Brother and called him by name. When I saw her Sunday, she smiled at me but I don't think she knew who I was. She did tell me she felt bad.

Nobody but God knows how long my parents have left. The doctors have quit guessing about my father, because he keeps almost dying and then rebounding. Right now he looks better and more full of life than I do. They said he has already outlived his body's capacity to live. He wanted me to take him shopping for new pants, something I don't think I can handle because he's supposed to be in a wheelchair but isn't. You never know which way he's going to topple, and he won't let you help because he's afraid he'll knock you down.

And now Mama has rebounded. Not by much, but she's eating again. It's hard to know what to feel when the few words she says are about how bad she feels. I'm not sure whether it's pain or the discomfort of her systems shutting down.

We've decided to go ahead with the hospice meeting because it can't hurt to have someone else come in and check on Mama. And, since my father was in hospice for a while (they kicked him out because it became clear he had no plans to die so they said he no longer qualified), he knows them. I feel sure that the hospice people will help minister to his grief before, during and after.

And I wonder if he will still be so determined to live if Mama isn't there to smile at him or kiss him?

Saintly Brother and I have agonized over whether or not to invite our father to the hospice meeting. My father doesn't know how close Mama is to the edge. He's so close himself it's a moral dilemma whether or not to tell him. After much discussion, we have decided to include my father because we may face feeding tube issues and he needs to understand what his choices will mean. I'm sure he doesn't have the capacity to withhold food from Mama. This man likes to feed people as it is. I've read the hospice materials about feeding tubes and how, when your body can't digest food and so you refuse it, force-feeding can create more pain and discomfort.

This is just awful.

Anyway, we meet tomorrow. I dread it more than you can imagine. Non-Saintly Brother is also invited. I hope he will come. We're all in this together.

I Would Go Crazy but I Don't Have the Time

Life is giving me whiplash this week. I received word that Mama has quit eating (typical of the end stages of Alzheimer's) and they're bringing in hospice. That same day, I had to give lessons to someone young and wonderful on how to use feminine products that require the ability to aim. If you have to ask, just forget about it.

Today I had to take Lily to the dermatologist for microdermabrasion. I sure hope it helps. They keep putting her on stronger and stronger medicine. Acne is expensive! Her beautiful face is looking better and she is encouraged.

I did get a mid-day lift: a voicemail from Paul telling me how much he's looking forward to spending the weekend with me.

I talked to my father, who is back in assisted living but mad because he's lost his cell phone, they haven't delivered his oxygen, and why haven't I gone to his garden to pick the curly mustard and the turnips, which will ruin soon?

When I got home, I had two voicemail messages from my MIL. The first was an offer to take care of Lily when my father dies. (!!!) It was all about my father in the past tense, and it was well-intentioned, bless her heart. Then there was the second message from my MIL saying she was sorry, she had the wrong decrepit parent, but that the same things apply when my mother dies since my MIL misunderstood who was doing the dying this week. (Her language was much more euphemistic but that's what it meant. And I do give her credit for offering to help, though generally her help involves a lot of "isn't this just awful for you?" statements.)

By the way, I'm not expecting anybody to pass away anytime soon. They just continue to decline slowly, and some days it feels like I'm going with them.

I've been exercising more (great for stress) and my feet hurt this morning. (I have formerly broken foot bone and plantar fasciatis, so I have to take good care of my feet.) That means I've worn my shoes out, even though they look fine, so I got a new pair. Wonderful, cushy million-dollar things that feel like I've got clouds on my feet.

Speaking of clouds, on the way home from school Lily told me how much my mother is going to enjoy seeing her family (the deceased ones) and all of Mama's dead pets when she gets to heaven. Lily said, "Grandma will have figured out all the fun things to do by the time you get to heaven, so you will have a whole lot of fun when she shows you. And then you can show me when I get there."