Better, then Worse

It’s been a year and a half since I last wrote here. For much of that time, Mama was much improved. She was very conversational, had very few hallucinations or delusions, and seemed almost like her former self.  That means that visits were much more interesting because I could engage her. She was reading a lot (book after book after book) and was spending time coloring pages from a coloring book. Jim bought her a more advanced book and a set of colored markers of her own, and it was about then that she declined again.

I remember reading somewhere that the progression of Lewy Body Dementia was not necessarily down down down. Instead it can be down up down. Apparently the ups can be significant: I can say that from personal experience. Last summer when John was here, Mama was in great shape and the two of them had the opportunity to spend meaningful time together.

In April, Lori organized a tea party for Mama at the nursing home–something she’d been talking about doing for a long time. She reserved a conference room and, including Mom’s friend Janice, had tea, finger sandwiches, and a host of pastries prepared from scratch by Lori–English tea cakes, thumbprint cookies with homemade lemon curd, and other things that I can’t remember right now. We had a great time. Lots of talking and laughing, at least by me, Lori, and Janice. Mama was interactive to a point, but she was beginning to demonstrates signs of heading back down. The timing was lucky because it was right at her turning point. Another week, and Mama wouldn’t have been present. We will look back on that occasion and have fond memories.

Ever since then she hasn’t been so good. And she doesn’t tell many of her “stories” anymore. In fact, she rarely can put together a sentence. She does know who I am when I visit and I’m grateful for that. I’ve been taking Freddy (the canine child) with me because putting him in her lap seems to engage her when I can’t on my own. She doesn’t know whether I stay for 2 minutes or 20, and I’m pretty sure that when I leave she forgets immediately that I was there.

I visit for me, though, not her.  I have no expectations that she’ll have another “up” period of any significance and I’m sad about that. I’m grateful that she’s well cared for, and doesn’t seem to be distressed about anything in particular. I’ve been wondering about how John’s visit in August will go, and want to try to prepare him for the much-diminished version of Mama he will experience this time.

Time In Between

I haven’t seen Mama in over a week. I was sick and didn’t want to visit for fear of transmitting something. Then it snowed. Anyone who has been in Seattle during a snow knows how wacky things get: Lots of hills, not many plows, not much sand or salt, and not much driving experience. “Driving defensively” takes on a completely new meaning. Anyway, I’ve been fretting that I haven’t seen her. The staff has reported that she has another UTI which they’re treating, and the hospital told them there was “something on her lung.” Jim is waiting to hear from Mom’s doctor to see what that’s all about. Another bout of pneumonia perhaps? Whatever it is, it has the capacity to shut her down for good. Anything does. So I fret.

I don’t want her to die when I haven’t seen her in a while. I realize her days are mixed up, and sometimes she doesn’t remember who has come or gone. But if there’s a sliver of a chance that she’s wondering where I am, why have I not been there, why have I abandoned… okay, now that’s getting overly dramatic. Or is it?

If she had died while she was still in possession of her faculties, would I feel differently than I do about her dying in her current sad state? She’s a fraction of the woman she once was. Quite different. Sweet, pitiful, still funny sometimes. And loving. Which parts will I miss the most?

Mama, Please Don’t Cry

Today Mama was very emotional but struggled to help me understand. Each thought/sentence/story came out about halfway and I couldn’t guess the rest. I think a lot of it is related to her frustration with other people when they don’t “get” the things she’s telling them. It’s because what she’s telling them isn’t real, so of course they don’t get it. Like Margaret (her roommate) not responding “appropriately” when Mom wants to know why she took apart the pink light and didn’t put it back together. Well, there isn’t a pink light. And on top of that, Margaret is pretty deaf. Also Mom calls her Beverly, so Margaret may not even know she’s being addressed.

It was really sad to see her today. Pitiful. In the real sense of that word. I feel so bad for what she’s feeling, for how she is now.

The Sword Swallower? The Lion Tamer?

I drove up to see Mama on Saturday, New Year’s Eve. Before I arrived my brother called to give me a heads up. She had called him (with help from the office) because she was upset about the digital photo frame by her bed. All of the photos had lines through them, and each one had a dollar amount marked on it. It all added up to over a million dollars—that she thought she owed! She also thought Jim had joined the circus. He told her he may have wanted to join the circus a few times, but he hadn’t. Not yet.

When I arrived, she was still distressed, but the photo frame was working just fine (and had been—no lines, no dollar amounts). At that point she was feeling bad about not knowing that what she “saw” earlier wasn’t real. I tried to empathize with her: “Mom, it must be so confusing for you when people tell you that what you’re seeing isn’t real. It’s your brain playing tricks on you. I’m so sorry you’re having to go through that.” And I am sorry. Very sorry. My poor Mama.

A Magical Ceiling

Another story from a while ago: Mom’s roommate is conspiring with others to remove her half of the ceiling (which Mom owns, she thinks) and replace it with a copy. This is not okay because Mom’s ceiling is made of gold, silver, and copper. And it was designed by an artist named Erh. Expensive materials and also valuable for its artistic origin. My answer (which has become a standard answer): Mom, you don’t need to worry about that. Jim is your guardian now and he will make sure that doesn’t happen. It works. So far.

Fine Wine in the Nursing Home

Here’s one of Mama’s “stories” as we call them. Sometimes she knows they’re not real, but other times she insists.

The prescription bottles on the nursing cart in the hallway have wine in them. Mom and her roommate tasted the wine and didn’t like it so they boiled it and it was better then. The owner of the hotel, the ABC Rat Company, is trying to get a permit to make and distribute the wine. The permit is “in the mail” but hasn’t arrived and everybody’s looking for it. However, Mom has it. It came addressed to her and she has had it hidden in her “britches.” She finally confessed to the fellow who changes her britches at night that she had it hidden and she gave it to him to take to the hotel owners.

Amazing how her brain pieces things together.

Lucidity

Today I visited Mom at the nursing home. Gave her a purple jogging suit for her birthday (which was yesterday). I never thought I’d see the day when she’d want one of those, but then, I never thought I’d see a lot of the stuff that’s going on with her. She was pretty lucid today–even used the word “obstreperous” when talking about some nursing assistants and their behavior. I don’t think I’ve ever used that word in my life. But she also talked about the two cats she has, and about being picked up by her nose by the staff. She starts drifting and it’s hard to call her back sometimes. We stayed for just a little longer than an hour… that’s about her (our) limit. Jim and Lori were with me and we went out for lunch together afterward. That was our family Christmas event: The Conway Pub and Eatery. It was a fine way to acknowledge the holiday. Good enough, anyway.

So what’s the story about Mom? In June she got shingles and ended up in the hospital. I thought the pain meds were making her act loopy, but she never stopped acting loopy. She went from hospital directly to nursing home, never to set foot in her house again. It was shocking. It was heartbreaking. The speed at which she plunged into major dementia was astounding. Lewy Body Dementia (LBD)–that’s the best guess for what she has. It’s different from Alzheimers in some significant ways. She has lots of hallucinations and delusions, mostly about people and animals (like the goat that was in her room one day). While still in the hospital she was telling me about the salesmen who live in the basement and how they were taking care of her down there at night because they were afraid she wouldn’t get good enough care in the regular hospital room. They had special blankets that heated up to body temperature and automatically adjusted themselves as the blankets cooled and then warmed again. She also made note that their wardrobes (closets) were different from Mom’s because they had to have room for their evening clothes. What? At that time I still thought it was pain medications.

She’s also a high fall risk (another LBD symptom), so she’s not allowed to get out of bed or transfer to her wheelchair without help. Actually I don’t think she’d be able to do it by herself anyway, but the staff doesn’t’ want us helping her either. And there’s no way we could get her into one of our cars, so that means we don’t take her anywhere. She doesn’t seem to mind too much.

Overall she’s receiving very good care from nice people in a place that’s clean and serviceable. She shares a room with Margaret (who has the window side and always has the curtain drawn in between herself and Mom). There’s no TV, no window that Mom can see, but she seems okay. She spends hours watching the digital picture frame that Jim loaded for her. So I guess she sleeps a lot and stares into nothingness a lot. Her “stories” (that she thinks are real) are very creative and I choose to laugh at how her brain conjures up such weird things because laughing makes it easier to bear watching her.

It was overnight. Overnight she went from being sharp to being seriously ill. And unrecognizable to me. With LBD, a person can be in the early stages with no one noticing for a long time. Then, if he/she gets sick or has any assault to the immune system, he/she can plummet into advanced dementia. A lot of what I’ve read fits Mom. They aren’t able to diagnose LBD except through autopsy, so it’s only an educated guess. With this blog, I hope to recount some of Mom’s stories (they’re sometimes quite entertaining). And I also want to pay tribute to her.

She’s 87. Today.

Mama at the summer picnic. 

It was really important to my mama that she stay in her house for as long as possible. She lived there by herself for five years after Dad died. It was obvious that she was getting older and more frail, but she was sharp. And more. Smart. Articulate. Funny. Narcissistic. Liberal. Cat-loving. Lonely. Lucky to have a fantastic neighbor. And loved.  Yes, she drove me crazy a lot of the time. And I thought and said unkind things about her. She used to say to me “I love you because you’re my daughter, but I don’t like you.” I thought that was a terribly hurtful thing to say to your child, but now I’m understanding how she felt.

For my first 30 years I played dutiful daughter, and then gave that up for my next 25. But how I’ve  returned full circle to duty and feel love for her because she’s my mother and she needs to be loved. And yet she’s not my mother anymore… who is she?