Caring for Mary

Happy Birthday, Mom

2011-07-26T18:33:00.001-07:00

Today is my mother's birthday. She would have been 89. As Jeanne said, she's happier where she is now. She was so miserable those last few years. This picture is of a somewhat happier day, at adult day care. When they would do karaoke, they said Mom would sometimes grab the microphone and sing. Mom always loved music, particularly singing; had she gone to college, she was planning to major in music. But Mom was never much interested in the limelight. Her grabbing a microphone was so unlike her. The thought of her showboating like this cracks me up.

Happy birthday, Mom. I love you, and I miss you.

20 Years

2011-07-23T20:05:00.001-07:00

Dad died 20 years ago today. For once, something really does seem like it happened that long ago. Twenty years sounds like a really long time, and it is. A generation. RIP, Dad.

Merrimac

2011-05-28T18:02:00.001-07:00

It is Memorial Day weekend, and Jeanne, Cleo and I are spending it at a vacation rental condo in Merrimac, WI, just outside of Baraboo. We've stayed here a few times before, and though we never brought Mom here, memories of her are redolent. This is where we used to come as respite from Mom. It started with weekends, and we would have Jeanne's mom stay with my mom. We picked this place because it was not too far from home, maybe 2 hours, and because we could bring Cleo.

The first weekend we came here to stay, Ella, Jeanne's mom, came to our house, and we were showing her where stuff was, and just talking. Mom was still mobile, and somewhat functional. Her bedroom door was closed. All of a sudden we heard a bang. We went running into Mom's room, and she was sitting on the floor, dazed. She had been dressing herself (we laid her clothes out the night before), went to sit on a chair, and the chair scooted out from under her, hitting the wall as she hit the floor. In addition, she had her bra on over her shirt, a clear sign to us that the Alzheimer's was progressing. Her eyes were open, but she was out of it. We got her to lay down, and I called 911.

Before the paramedics arrived, she snapped out of whatever state she was in. She would not remain seated on the floor, so we helped her up and into a chair in the living room. When the paramedics got there, they ran all sorts of tests on her blood, her oxygen level, sugar level, and I don't remember what all. Her levels were better than most people's. The paramedics said they could take her to the hospital for more tests, but we decided against it. Then we had to debate whether to go for the weekend or not. Ella, who is also a nurse's aide, was still willing to stay with her, and Mom seemed just fine. So after much back and forth, we decided to go. Mom and Ella were fine for the weekend, but I immediately came down with such a bad cold that I slept most of the time we were here. I think it was the first time since Mom had come to live with us that I let myself relax, and with my defenses down, the cold attacked with a vengeance. Who knew how long it had been waiting for that opportunity?

The next time we came here for a weekend, Mom had, of course, degenerated some more, and Ella ended up calling us multiple times with questions and problems. We were on our way home at the end of the weekend, but stopped in Madison, and hoped to spend some time with Jerri and Dave and the girls, who had taken a weekend there. Ella called again, and this time we had to cut our visit short and come home. Mom had figured out how to "work" Ella, or maybe it was how to play her. Anyway, she was becoming too difficult for Ella to manage, so we came home.

The next time we were scheduled to come to Merrimac, we actually put Mom in a respite center for 2 weeks. The first day, we were going to Spring Green with friends to see a play, then we would come to Merrimac for a week, then spend a week at home. On that first day, the morning of which we took Mom to the respite center, we were driving home after the play when I got a phone call. It was the respite center Director of Nursing, who had assured us on our pre-stay tour that they would take good care of Mom. Mom had fallen and broken 4 ribs. I was furious. How could they have let this happen? I'm pretty sure we had taken all the steps ahead of time to check this place out. They had a well-regarded adult day care program, and had just started the respite program. Unfortunately, they had not worked all the kinks out yet.

We had informed them that Mom was at high risk of falling, so they had one of the "safe" rooms reserved for her. But the previous tenant's family did not come pick him up when they were supposed to, so instead of moving him, they temporarily put Mom in a different room. There was an electric eye motion detector over the bed she was resting in, but somehow she got out of bed without setting it off. I don't know why she fell, but she did, and apparently hit her ribs on the bed frame. An aide went in to check her at one point, and found her lying on the floor. They called 911 and sent her to the hospital, who at first thought she hadn't broken anything. The next day they called to inform us that on a second reading of her xrays, they could see she had broken 4 ribs.

But that night of the day she fell, Jeanne and I went over to the center as soon as we got home. I believe it was around 10 p.m. when we had a meeting with the director, director of nursing, and a few others at the center. They heard all our frustrations and disappointments, and they apologized and explained as best they could what happened. Tears were shed on both sides, more on theirs, actually. Ultimately, Jeanne and I decided that we really needed the break, and we would let Mom stay there the rest of the 2 weeks. But we cancelled our stay here in Merrimac, and just stayed home, so we were close should anything else happen. Which it did, and on the day we tried to take a day trip to Watertown. Another on-the-road phone call from the center. Mom's lips were horribly swollen. I had them call Mom's doctor and ask him what he thought. He thought they should send her to the ER and have her checked out. So I agreed, and turned the car around.

She was at the ER, only had been sent there with just a jacket on, no shirt underneath. The swelling was going down. Everyone kept asking if she was on a specific medication which I don't recall right now. She wasn't. They kept insisting that the type of swelling she had was only seen in patients with an allergic reaction to this specific med. My suspicion is that somehow they gave her someone else's meds. After those two weeks, we never went back that center, except to meet once again with the top administrators, who agreed to pay for the condo rental, since we cancelled too late for a refund. The owner wasn't going to make us pay, but it wasn't her fault, and she would have been able to rent to condo to someone else, as it was the July 4th week, so we insisted the center pay us so we could pay the condo owner.

Eventually, with Mom in a different respite facility, we tried to come up here one other weekend. I don't even remember what happened with Mom that weekend, but we again had to cancel. The owner said she would keep our deposit, and we should come when we no longer had to worry about something coming up with Mom that would force us to cancel. That was over 2 years ago, and we are finally here.

So yes, though Mom was never here, this vacation space is overflowing with her memory. Jeanne and I decided today that we probably won't be coming back after this weekend.

It's Not Over Yet

2011-04-06T18:38:00.000-07:00

Mom and her brothers: Al, Ray, Mom, and Art

I was just at the point where I thought, “I don’t know if I really have anything left to post to the blog.” Maybe at anniversaries, but I had nothing more to say. I’m not one of those bloggers who writes daily or weekly or even monthly “columns” of useful or interesting information. I pretty much write what I hope will be helpful to me. It’s not exactly, or maybe not only that I’m being self-serving. It’s really just all I think I have to offer.

Then two weeks ago today, I got a phone call from my Aunt Marian. Marian is the wife of my mom’s younger brother, Art. As soon as I saw the name on the caller i.d., I knew why she was calling. Uncle Art had died at 4 that morning. He’d been in the hospital or a nursing home since December. She didn’t know what they would consider the cause of death; he had Parkinson’s, and a number of other health issues. His latest problems were all respiratory.

I expressed my condolences, thanked Marian for calling, and asked her to call me back once the arrangements were made. I wasn’t seriously considering attending the funeral, but I did want to know the details.

The thing is, I did not expect that the news of Art’s death would affect me the way it did. Even though on some level I was expecting it, I was stunned. The news affected me rather strongly. It sent me deep inside, which I guess is really me withdrawing into myself while I try to process something. I’m still not sure why I had such a strong reaction. Art was the youngest of the four Leininger children, 2 years younger than Mom. Al and Ray (first and second respectively in birth order) had died years ago. I believe Ray’s wife Geneva has also died, but Al’s wife Analie is still alive, and of course, Art’s wife Marian. And yet, Art was the last of the Leininger children in that generation. In some ways, I guess, it is the ending of an era.

Mom did not stay particularly close to her brothers during the time we kids were growing up. Art and Marian, along with their kids John and Kris, were by far the ones we saw most often. Even with them, I think my dad was more of the driving force to spend time with them. We liked Uncle Art and his family. Uncles Al and Ray, the rarely seen, were much crabbier, I thought, and scarier.

The evening after I received Marian’s call, I sent an email to my siblings, letting them know. I told them Marian would be getting back to me with additional information. Two or three days went by, and I heard nothing back from Marian or my siblings. I couldn’t believe they were just going to not respond. Then Marian called again. During all the arrangements, she had forgotten if she was supposed to call me back or not. She asked if she could email the information to me, which I was fine with. Then we actually had a nice chat. My last few (and infrequent) encounters with Art and Marian over the phone while Mom was staying with us were on the strange side. In fact, I think I’ve always thought Marian a little odd, and Art seemed to be growing more so. But first when I talked to Marian last year to tell them Mom died, and now again with Art’s death, she seemed surprisingly fine—not odd, even likable. It was refreshing to have this talk with her.

The next day, the email with Art’s funeral information arrived, and I forwarded it to my siblings. Lo and behold, they each wrote back. Paranoid? Me? Well, perhaps just a touch over-sensitive.

The day after Marian first called me with the news about Art, I was already over the initial shock. I still don’t fully know what that was about. But as soon as you think, I have nothing more to write, look what happens. Not always a death, I’m assuming, because I do actually have another entry I want to write when I get the time, which is Mom-related but not death-related. So here’s to Uncle Art, and I hope to write again soon.

The First Anniversary

2011-03-06T08:42:00.000-08:00

Written Feb. 16:

Saturday, February 12, was the first anniversary of Mom's death. It seems impossible to believe that it has been a whole year already.

The last few weeks have been difficult for me. Knowing the anniversary was so near, my emotions--all of them--have been right at the surface. It's hard to maintain a steady course when the waves are so constantly roiling.

When Mom died, there was the relief that now she would be at peace, and she no longer had to suffer. There were all the details of the death to handle, from getting the death certificate signed, to notifying family and friends, planning the memorial service, settling the estate, and all the other countless little things that needed attending to. There was adapting to life without her, without having to care for her, to arrange to have someone at home with her at all times, to dealing with (often fighting with) the health professionals and caregivers, and trying to figure out what is best for someone who could no longer communicate. Missing her was not immediate.

But now I miss her. As I continue to recover/uncover all of her, and not just who she was for the last few years as the Alzheimer's slowly robbed her of more and more of her functionality and her self, I miss that whole self more and more.

March 6:

I never finished that post, and now, today it is the one-year anniversary of Mom's memorial service. (On a side note, it is also the one-year anniversary of my friend Shelly's 52nd and final birthday party, the one I couldn't attend because of the service. Shelly died of pancreatic cancer in June). I have read in a couple of different places that it is the leading up to the first anniversary that is more difficult than the anniversary itself. That has certainly been true in my case. It seems that roiling emotions just relaxed into calm waters on the actual day of the anniversary.

Jeanne and I (and Cleo, the wonder dog) drove to Green Bay that day. It was the Saturday after the Packers won Super Bowl XLV, so of course our first stop was at the Packers Pro Shop at Lambeau Field. Someone asked what that had to do with remembering Mom. She and Dad had season tickets to the Packers games for all the years they lived in Green Bay. Mom preferred watching on TV, so when my brothers got older, they often went with Dad instead. Now they have inherited the tickets. Mom would sometimes tell me how when they first moved to GB, the games were still being played at the Green Bay East High School field. All four of us kids graduated from East. Cheering for the Packers was something Mom could still do even after watching most other TV shows became meaningless for her. Our visit to the Pro Shop may have been motivated by self-interest, but it's not like there are no connections to the Packers in my memories of Mom.

After the Pro Shop, we drove to the cemetery. The flat headstones were all covered with snow, so we trudged around in the vicinity of the grave, but under the snow was a layer of ice, so we couldn't dig through to the headstone itself. That was no big surprise, and it was okay. I don't need to see the marker to know it's there.

Then we drove to the nearby McDonalds to use the restrooms, and saw Kaap's Fine Candies next door. I won't go into the long history of Kaap's in GB, but will say that it was an old German restaurant, with a bakery and candy shop. Everything they made was out of this world. Otto Kaap is long gone, as is the restaurant with its dark wood interior on Washington Street, but the candy shop survives on Webster Avenue. Jeanne and I had to stop, and we picked out a pound of the best dark chocolate candy I've had in a very long time. And I eat a lot of dark chocolate! Even though I'd never been in this store location before, just being in a store called Kaap's, with pictures of the old restaurant, and the familiar candy boxes, brought a lot of memories back.

Positive memories (except for the bedevilment of knowing I may never again have a cheesecake like Kaap's used to make; that recipe was not saved when the original restaurant closed, and I've never seen a cheesecake like that--tall and light--again. What a loss!).

By the time we left Kaap's, it was snowing and getting dark, so instead of dinner at Titletown Brewery (a restaurant Mom was pleased to introduce us to), we drove home. All day long, I felt so calm, even peaceful, as cliche as that sounds. It was nothing like the emotional weeks leading up to this first anniversary. Go figure. The "grief book" was right on target about this.

And yet, it took me three weeks to write this. Ah, I'm sure it's just because I've been busy.

2011

2011-01-04T13:52:00.000-08:00

Christmas has come and gone, and the new year has begun. It's zooming in on one year since Mom died, and more and more I have begun to miss her. Not just the healthy Mom, but also the Mom I cared for as Alzheimer's transformed her. I wasn't sure that day would ever come.

The holidays are always stressful; because I teach, I'm busy grading almost right up to Christmas, making preparations difficult. This year was worse, I confess. So one night Jeanne and I watched the slideshow we prepared for Mom's memorial service. It was very helpful. I find watching it healing. It gives me my mom back, through all stages of her life.

Mom & Paul (the oldest), circa Christmas, 1952

On a slightly different note, I read an exceptional article in the New York Times today. I don't keep up to date with reading about Alzheimer's, but when I do, their work seems to me the best and most relevant on the topic. Here is a link to the article entitled "Giving Alzheimer’s Patients Their Way, Even Chocolate": http://www.nytimes.com/2011/01/01/health/01care.html?ref=homepage&src=me&pagewanted=all

Jeanne and I did some of these things intuitively, like giving her a piece of chocolate as a treat. She could be at her most shut down, and we would say "chocolate," and she would put her hand out to receive it. But we were also incredibly vigilant about making sure Mom ate and did what was healthy for her more than what she wanted. I would have done a few things differently had I read this article 2 years or more ago. I recommend it highly.

So, all said and done, here's to a new year of grieving and recovery. I'm hoping for good things gradually developing.

I'm in the picture, so this is probably Christmas, 1959

The Six Stages of Grief

2010-11-28T14:42:00.000-08:00

This last semester has been a struggle for me. My students have been good, thank the universe, but everthing else has just been difficult. I have been feeling inadequate, and as though I can't do anything right. I didn't really think it had anything to do with Mom's death. I don't remember experiencing anything like this when Dad died. Forget the fact that I'd always been much closer to Mom than to Dad. And the fact that I cared for Mom on a daily basis for the six years that she lived with us, that I was responsible for her, that I was with her when she died, that I helped clean her and dress her for the funeral home. It's taken me a couple of months, but I finally figured out that these feelings are a part of my grief. Kubler-Ross missed this one; the sixth stage is inadequacy.

And now that we have just celebrated Thanksgiving, I feel a grief that feels more like what I think grief should feel like. Our first major holiday (summer holidays don't count, and for some reason, neither did Easter) without Mom. We had Jerri and Dave and the grandgirls over for our traditional holiday brunch, and realized it was the first one without her. There was a lot less stress, not having to get her up, to feed her, toilet her, and get her down for a nap during this family time. And I felt my loss of her keenly. Then the realization that we were almost to my birthday, followed by Christmas. The first Christmas without her. That's something I'm not looking forward to.

We watched The Family Stone last night. I've seen it 3 or 4 times before, so I knew I was running the risk of a meltdown (if you are't familiar with the film, all I'll say is that it is about a family of parents and their adult children and partners getting together for Christmas. If you are familiar with the film, you don't need a spoiler to tell you why it was loaded territory for me). I didn't meltdown, but it was "helpful" in getting me in touch with my grief. I don't think I'm through with the inadequacy stage, but I am also moving into sadness, which according to what I read, is technically part of depression. That's where I would guess inadequacy falls, as well.

What I most have to remind myself is that there is no timeframe around when I should be "over" this. Some people have told me it took them 2 years to feel normal again after the death of a parent. I guess I shouldn't necessarily expect next semester to go more smoothly than this one. At any rate, grief is upon me, and rather than try to think ahead, I think I need to live today. Grief and all.

2010-11-16T18:39:00.000-08:00

Now that I am no longer caring for Mom, the obvious question is, what does this blog become? The title states its original reason for being. I wanted a place to write about and share what I was going through while trying to care for my mother as she was slowly dying of Alzheimer's. Now that she is gone, the answer seems clear--for now, at least. Now this is about grief. This is so much about grief that I thought it was too much, and I didn't post what I wanted to post in September. Let me take care of that now.

Two years ago, around Thanksgiving, one of our three cats suddenly became very, very sick. We first realized it on a Wednesday afternoon. We called the vet's office, described her symptoms, and they said we needed to bring her in right away. But here's the thing. It was our day with our granddaughters; Avri and Kiana were over. They were 2 and 4 at the time. And Mom had just gotten home from day care. There was no way one of us could handle all 3 of them. So we waited until Thursday, and Jeanne took her in while I was at school. They kept her over night, on IV fluids. We almost lost her. But she was a strong cat, our Juno, and she recovered. We had to give her subcutaneous fluids (think of kitty dialysis with an IV bag); I think we started with either every day or every other day. Eventually, we got her down to once a week, but she had kidney failure, so this was a rest-of-her-life thing. And pills, which I think she hated more than getting stuck with a needle and pumped full of fluids until she looked like a camel. But Juno was strong; the vet said she had never seen a cat recover as well as Juno did.

Then this September, she developed pancreatitis. She was throwing up, couldn't eat or drink, and eventually started an almost constant oozing of blood and runny stool. It was a mess. We became regulars at the vet's office, even stopping at her house a few times to pick up meds. But nothing worked, and on September 16, we took her in one last time. The vet took one look at her, and said, "She's ready. She's in pain, and she wants to go." We'd said most of our goodbyes at home, including having the other cats and the dog having one last moment with her. But said our final goodbyes, and the vet administered the shot. Our baby was gone.

I didn't feel I could write about Juno's death when it happened, not because I didn't want to, but because I felt that it was too much. Too much what, I'm not sure. Too much death, not enough balance. I am not a morose person, but sometimes I think this blog is. So why am I writing this now? I'm struggling (more on that in a later post), and I think I've found a new direction for the blog (sort of), and first things first. Juno is gone, euthanized 3 weeks before her 1th birthday. Her sister Selu is meowing at me as I write this, telling me to go to bed so she can go to bed with me. Sounds like a good idea, but first, my little Juno tribute.

The 3 girls in their youth

Juno

Juno and Selu, sisters, in one last photo

Happy Birthday, Dad

2010-08-13T11:22:00.000-07:00

He would have been 88 today. His mother lived to be 90; she was the only biological grandparent I knew. Dad's dad died young. I think my dad was 17 when his dad died. I'll have to look it up. Dad died a month short of his 69th birthday, 19 years ago. And Mom died 6 months ago yesterday.

So many dates and anniversaries, I begin to wonder if there are too many to really mean anything, other than I get lots of memory prompts in the summer. They each mean a little less the farther I move away from them. I used to go to the shore of Lake Michigan and send Dad a Happy Birthday balloon every year on this date. After 3 or 4 years I stopped. I no longer felt that need.

Yet I also notice that I do not forget these dates. I make a point not to forget all these dates. They must mean something; in fact, I feel as though their meaning is probably fairly obvious. Maybe it's too close, staring me in the face, as they say, so that I cannot make out the relevance of remembering these milestones. Or maybe that's the point, remembering. Those casually tossed off "memory prompts" are the meaning. Wisdom has it that one mustn't live in the past. Ignoring the past is, on the other hand, ignoring what made us what we are in the present.

Whatever the meaning, the memories are here, as is the love (and the fights and the laughs and the dysfunction). Another milestone, more memories, another summer day.

Another milestone

2010-08-12T13:37:00.000-07:00

When last I wrote, I mentioned that my dad's birthday is this week--tomorrow, actually. What I didn't even realize was that today, August 12, is the 6-month anniversary of Mom's death.

I had lunch with a friend/colleague today, a mutual friend of my colleague who died two months ago tomorrow. We talked a lot about death, and her aging parents (her mom has Alzheimer's). I would not say it was a morbid conversation, however, or even a depressing one. It was a necessary one, perhaps. What I have found, especially in these past 6 months, is that there are a fair number of people out there who will do anything to avoid talking about, and thus thinking about, death. Quite frankly, that doesn't work for me. Death is a natural consequence of life. To try to ignore it makes absolutely no sense to me. Acknowledging it, accepting it, even expecting it seems not only rational, but helpful. Being at my mom's side when she died was an incredibly grace-filled moment. I felt that she honored me by allowing me to witness that transition.

So a lunch conversation about death does not strike me as odd or morbid, but in many ways as helpful. Death happens.

And Mom, wherever you are now, it cannot be as bad as the hell of Alzheimer's, so I don't wish you back, but I do miss you. I hope that whatever place you are in, in whatever form you are in, it's giving you peace.

Pilgrimage

2010-08-06T11:49:00.000-07:00

Monday, July 26, would have been Mom's 88th birthday. To mark the occasion, Jeanne and I drove up to Green Bay (with our dog Cleo). We hadn't been to the cemetery since Mom's burial and the engraving being finished. So I bought a plant, which is surely dead by now unless "neighbors" are watering it, and placed it on the grave. Here is a partially shaded photo:

We didn't stay long at the cemetery; there's not much to do there. So we cruised past Mom & Dad's old condo. We also found my childhood home, which got moved when the YWCA bought the lot for parking. I knew what street they moved it to, but not which block. So we drove up the street until I recognized it; it's a big house, and had a few identifying features that made me confident that I'd correctly identified it. That was enjoyable; I loved that house. We also drove past my old high school, to make sure the headless children still had their heads reattached (long story, but one that always brings a smile. I may have to tell it some day, as Mom has a significant role in it).

Then we picked up some lunch, and had a little picnic at a park by the river. It felt surprisingly freeing to be in my home town with no agenda, no one to have to see, nowhere to have to be.

And then we drove home. I did not feel overtly emotional that day, but I could feel the next day that things were not their placid normal selves. Not much more to report than that. Getting ready for Dad's birthday next week. As I mentioned in my previous post, this is the season of remembering for me.

Anniversaries

2010-07-23T13:17:00.000-07:00

Today is the 19th anniversary of my dad's death. Monday is the 88th anniversary of my mom's birth. Mom was never crazy about her birthday, and once Dad died, 3 days before her birthday, she liked them even less. Even as Alzheimer's took her mind, some part of her seemed to remember these dates. Ever since she came to live with us, and possibly before, this time of the year was difficult for her. Her moods and demeanor would be a little darker and agitated in mid-to-late summer. She was unhappier. And it definitely was not because of the weather. Wisconsin summers are too short, and she disliked the winters too much for us to think it was a "seasonal" effect. We're sure it was an anniversary effect, though perhaps never conscious.

For me, this is also a time to remember these anniversaries. I try to stay focused on the happy memories.

Grief redux

2010-06-17T11:17:00.000-07:00

Back from vacation to California and Arizona. Actually, I presented at the American Literature Association conference in San Francisco, which we used as an opportunity for vacation. Our friends Karri and Pete live in Oakland, so with the exception of the night before my presentation, when we stayed in the beautiful Hyatt Regency, we stayed with them. They are incredible hosts, so we had a great time. My presentation at the conference, despite being in a terrible time slot, went really well.

Lobby of Hyatt Regency SF

Karri and Pete also took us to their bungalow in the Sierra Nevada foothills for a few days, with one day trip to Yosemite. That was spectacular. Can I limit myself to one picture? I took many. Okay, let's do two.

Okay, maybe three, as I have to include our hosts.

One thing that struck as we drove and walked around northern California with Karri and Pete was how often I thought of a story about Mom. I finally made myself stop sharing them, they came up so often. Oddly enough, I can't remember now what those stories were. I think some of them probably had to do with family vacations as a kid, but honestly, I'm not sure what to attribute the abundance of Mom-sharing to. Karri was perhaps the most consistent of my friends to call me and see how we were doing with Mom's care while she was with us. But there was more going on than just that.

Golden Gate Bridge

We also spent 4 days in Mesa, AZ, with our daughter Jobee and her boyfriend Justin. We had an enjoyable, relaxing, and hot time there, including a visit to the Phoenix Botanical Gardens.

The truth is, I'm only giving a very abbreviated version of our vacation. When we got home, we took a few more days off, then started working our way back into some sort of routine of work and downtime. I was supposed to go to lunch on the Tuesday after we got back with my friend and colleague, Shelly. Shortly before leaving on our trip, I attended a work-related 'retreat,' and that's when we set the date. Shelly was diagnosed almost exactly a year ago with pancreatic cancer. She had surgery, but was constantly struggling with chemo and radiation. They would start the treatments, and her platelets would go out of whack. So they would stop, and try another dose, combination, whatever. So things like lunch with a friend were a high priority for Shelly, especially since she didn't always know if she would be feeling up to it on any given day.

The day before we were to meet, I sent her an email, asking where she would like to meet. That evening, when I checked my email to see if she had answered, there was an email from a mutual friend and colleague, Ellen, with the subject line "News about Shelly." The email said I should call Ellen. I knew this was not good. I called her. She, too, had just returned from a two-week vacation. She reported that Shelly had been have trouble with a post-surgery stent, and had been in and out of the hospital while we were both gone. The Thursday before, she learned, Shelly became unresponsive. On Sunday, June 13, Shelly died.

Shelly and I were friends, though not in each others' closest circles. And I can't stop thinking about Shelly, and how sad it is that I will never bump into her on campus, and that we'll weren't able to have that last scheduled lunch. Shelly was a great teacher, tough and demanding, and I admired her dedication and the tremendous hard work she put into moving her students to a new level of understanding. And I know that somehow, the grief for Shelly is weighted on top of the grief for Mom, magnifying both.

And I can't stop thinking about the loss, our loss, now that Shelly is gone.

Love

2010-04-25T11:30:00.000-07:00

Grief is a strange beast. I rarely feel actively sad about Mom's death. Mostly I feel strange things going on in my physical self. I'm tired a lot, even though I get enough sleep. I have more aches and mysterious pains than I used to, and I'm convinced it's not just a part of getting older. Not all of it, at any rate. I was talking to someone I know who has recently been through more than his share of grief. He said that while he was in the midst of his wife's cancer, people kept asking him if he was okay. He always said he was, because he didn't realize until after her death that he wasn't. You have to keep going, and you don't recognize the effects caregiving takes on you. Then after his wife died, he said it was like all the air rushing out of a balloon. It's an apt metaphor.

Recently, I've started remembering Mom more. Up until now, it's been a lot of blankness. But now I start to think of her more often. I remember her, her life, not just the past 6 years. She was a great mom.

This may seem a bit after the fact, but I am posting the eulogy I wrote for Mom's memorial service. I guess it's time.

I would like to read from 1 Corinthians 13:

If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal.

So I trust that, with love for my mother and my mother’s love for me, my words will be neither a noisy gong or clanging symbol.

And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but do not have love, I am nothing. If I give away all my possessions, and if I hand over my body so that I may boast, but do not have love, I gain nothing.

Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things.

Of the people I’ve spoken to in the last 3 weeks, almost all described my mother as a lady. And she was.
And she was patient, and kind, and never arrogant or rude. One of my favorite
stories’ of Mom’s was about how she met Dad. She was working in the treasurer’s office at Wartburg College. Dad was teaching there.
Mom’s home congregation in Nauvoo, IL was temporarily without a pastor.
They were getting supply pastors from all around, and one week, Dean Kilgust was
tapped to go preach there. Mom’s roommate, Arlean, told her, “Ask him for a ride; you can go home and visit your family. Besides, he’s single.” Mom, who was already in her late 20s and convinced marriage was not in her future, said, “No, I don’t want to ride with Dean Kilgust. He’s so arrogant.” Well, Arlean finally convinced her that it was a free ride home, and worth putting up with Dean for. Mom told me that on that ride to Nauvoo and back with Dean, she saw a different side of him, and found out he could be thoughtful and kind. And the rest, of course, is history.

It was not until Mom came to live with us that I found out how strongly that love endured. When words were becoming hard for her to use anymore, we would often get the picture albums out for her to look at. She enjoyed that most of the time, but the only time her face would light up would be when she would see a picture of Dad. Then she would gently touch the photo, and sometimes stroke his cheek. I always knew my mom loved my dad, but it took Alzheimer’s to show me that she was in love with him.

Language was the first thing Mom had trouble with due to Alzheimer’s. She loved to read, and always had a stack of library books next to the love seat she would sit in. She, more than anyone, modeled for me the reading that became both my love and my life’s work. It was when Mom could no longer remember what some of the words she was reading meant, words that she knew she knew, that she went to the doctor and was diagnosed with Alzheimer’s.

Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end.

Mom endured Alzheimer’s with a grace and dignity I couldn’t quite fathom. When something she used to be able to do became hard for her, she would say, “Well, that’s the disease. I won’t be able to do that anymore.” She wasn’t perfect, or a saint, but
she faced her disease with more acceptance than I thought humanly possible. She never asked, “Why me?” and she didn’t complain.

As her disease progressed, people would often ask, “Does she still know you?” That was always hard to answer, because I don’t believe she knew our names, or who we were to her, but she did know us. She knew that Jeanne and I were the people who were always with her, and who cared for her, and who kept her safe. On that last day, she knew we were out that afternoon; she knew when we got home; and she knew that when we got her into bed and comfortable, that she could finally leave.

For we know only in part, and we prophesy only in part; but when the complete comes, the partial will come to an end.

Being a witness at my mother’s death was one of the greatest gifts she’s given me. It was a privilege to be with her at the end of her life on this earth. And now she is complete again.

When I was a child, I spoke like a child, I thought like a child, I reasoned like a child; when I became an adult, I put an end to childish ways.

For now we see in a mirror, dimly, but then we will see face to face. Now I know only part; then I will know fully, even as I have been fully known.

And now faith, hope, and love abide, these three; and the greatest of these is love.

Mary Kilgust embodied love, and I am blessed to have had her as my mother.

At the Hairdresser's

2010-03-20T10:23:00.000-07:00

Yesterday I got my hair cut. I know, by itself, not exactly big news. But this stylist is the same woman who has done Mom's hair for at least the last 5 years, maybe 5 1/2. She said that she cannot believe the number of people who have been asking where the lady in the wheelchair is. Not just her customers, but the customers of the other stylists who rent spaces there. "It's amazing," she said, "how many lives your mother touched."

It's amazing indeed.

The End of a Long Journey

2010-02-28T08:20:00.000-08:00

Mary Margaret Kilgust finished this stage of her life on Friday, February 12, 2010. I don't pretend to know what the next stage is, but I know that she has been released from the fear and pain she endured on this earth.

She died the way we hoped, at home, with Jeanne and I at her bedside.

She'd had a rough week, starting with diarrhea on Wednesday, which weakened her so that she could only manage to swallow 2 or 3 bites at each meal. By Friday, her breath was labored; we could hear how rigid her lungs were becoming. We went out that afternoon while an aide sat with her. We got home around 4:30. She woke up, and stayed awake. Her breathing was so labored, more so when awake than when sleeping, so after talking to the aide and the guy who split some wood for us, we fed the animals, and decided to put her right to bed. We changed her, got her into bed, and raised the head to try to help ease her breathing. She was so clearly struggling, we both stayed with her, talking to her, trying to help her relax. Then she took 3 or 4 agonal breaths, and she was gone. We'd been home less than an hour. We are grateful that she waited for us.

Mom's doctor, my college friend, had made it clear that if we wanted her there when Mom died, she would come, no matter when. So I called her, and she came right over, missing her son's school performance (she did get to go the next night and see him emcee the show). Dr. Barb declared the death, helped us put a nice dress on Mom, and waited for the funeral home so she could sign the death certificate. Her presence was a big help in keeping things calm.

Jerri and the girls were on their way over to spend the evening. Obviously, while we knew Mom was failing, we didn't anticipate she was going to die quite that soon. Jeanne called Jerri and told her not to come, and why. The girls were in the van, and Kiana listened carefully to her mom's side of the conversation, so that when Jerri hung up, Kiana said, "Who's dying?" Jerri said, "What?", and Kiana said, "You said, 'She's dying right now?' Who's dying?" Jerri told them, "Mary died." Kiana started crying, so Jerri pulled over to comfort her. "I'm so sad," Kiana said, and when Jerri asked her why, she said, "Because now Grambie doesn't have a mommy anymore." Then she proceeded to tell Jerri how grateful she was that she still had her mommy. She's a pretty amazing kid.

Avri, amazing in her own way, hadn't really been paying attention to all of this until the mommy thing came up. Then she announced that she was sad, too, and that she was glad she had her mommy.

The funeral home here in town was great. Here's a link to her obituary:
http://www.asimas.com/ASIMAS/randledable/obituaryDescription.jsp?domain_id=218&deceased_id=218644

Being present for Mom's actual death was what we wanted, but it was also the thing that scared me the most. The way it happened, though, left me feeling that being with her for that moment was a great honor and privilege. It made even these most difficult last few years worth it.

There is, as usual, much more to write, but for now, I send this notice out to the world. I love you, Mom, and I'll miss you always.

Now or Never

2010-01-05T17:54:00.000-08:00

Kiana, Mom, and Avri

Dec. 2009

I was ready to write again the day after my last post. Guess what? It didn't happen. I'm always waiting for the correct amount of time and energy, never quite figuring out that I need to write what I can when I can, and let the rest fall by the wayside. Let's see, I was going to write about the visit to the neurologist, the last two respite stays for Mom, Christmas, and I don't even remember what else. My brother's visit. Oh, yeah, getting fired from daycare over a parking dispute. Mom is now home with us 24/7. I hope to be able to write about some of this at some point.

We brought Mom home from respite today. When we checked her in on Thursday, they weighed her. She was down to 78 pounds, fully dressed, including shoes. She still eats and drinks, but less and less all the time. The neurologist says she isn't metabolizing everything she is eating. She sleeps most of the time, which does make having her home all the time a little easier.

The picture above was actually taken a week before Christmas. Jerri and Dave were taking the girls to Florida for their first DisneyWorld visit, and didn't want them to leave without saying goodbye to Mary. There was some concern that she wouldn't make it to Christmas. You can see from the picture that she was momentarily awake and alert. She had already tuned back out before the next picture.

Anyway, when Mom came home from her December respite, she had deteriorated significantly, and we were no longer sure she would make it to Christmas. Jerri and Dave knew Kiana in particular would be upset if she didn't get a chance to say goodbye, and I wanted a last picture. Well, as usual, Mom rebounded, and though she's still losing weight, she is also still here, and shows no signs of dying this week. That's about all we can predict.

And about all I have time to write tonight. As my subject line says, my new approach to blogging (for today at least) is now or never. So this isn't much, but it's better than nothing. I hope to write more again soon.

Odds and Ends

2009-11-19T16:29:00.000-08:00

So ever since I wrote the last entry on Music to Grieve By, I think of other songs I would add to the list. Of course, I haven't been writing them down, so this will not be a complete update. But there are some songs I would like to add.

When I finished my PhD, I made a mix cd for my advisor. Ever since I started the program in one of her classes, I knew that someday I wanted to give her two songs that give thanks--Sinead O'Connor's "Thank You for Hearing Me" and Natalie Merchant's "Kind and Generous." So I had another 70 minutes to fill on the disc, and I filled it with songs that somehow reflected the dissertation/PhD experience. I listen to that cd a lot, as it turns out, and there are some songs on there that do help me in this extended grieving process. Several are from Patty Griffin's Children Running Through cd, especially "I Don't Ever Give Up," "No Bad News," and "Up to the Mountain (MLK song)."

I also find helpful two songs in particular (there are so many to choose from) from Amasong, a lesbian/feminist chorus from Champaign/Urbana that my former college roommate belongs to. They do a lot of folk and spiritual music from a variety of cultures. The two songs I turn to most often (though only one is on my mix cd) are "I Cannot Keep from Singing," and Bobby McFerrin's "23rd Psalm (dedicated to my mother)."

Not on my 'special' cd: I mentioned Peter Gabriel last time; he has many selections that stand out, but "I Grieve" from the City of Angels soundtrack deserves special mention for this purpose.

Yesterday I listened to Shawn Colvin's Fat City. The lyrics sometimes reflect her relative youth in 1992, but her songs are usually thoughtful and emotional, and that works for me. This was also my first Shawn Colvin cd, so I always think of it fondly.

And lest I forget the most important song from the most important film ever made, let me add Judy Garland's "Somewhere Over the Rainbow." I grew up loving that movie, my parents both loved Judy Garland, and "Somewhere Over the Rainbow" is one of the last songs I could get Mom to sing along with. "You are My Sunshine" is the other one. Israel Kamakawiwo'ole's version of "Rainbow" is also a favorite, but in my world, nothing compares to Judy.

Moving on from the music, there is one other item I wanted to post. Yesterday, a friend asked me in an email how my day was. I responded with unusual thoughtfulness on my part, and realized that what I wrote I could have written for this blog as well. So I am inserting a part of it.

"My day is winding down. We get a little online time while watching Mom eat her dinner. She eats herself, but needs some coaching and prompting, and lots of cleanup. But for those 30 minutes or so that she's actually eating, we get a short break. We'll eat after we put her in the recliner, just as we did when you came. It's been an emotional day for me. More and more in the mornings, after getting Mom up and washed and dressed and fed and off to day care on the van, the impact of her long, slow dying, and the prospect of her actual death getting more real and foreseeable, all puts me in touch with a grief that doesn't moderate with time. It's worse on the mornings I go to yoga, as I did this morning. Yoga makes me slow down, breathe, and become aware of what's going on internally. And now the end of the day, near the end of the week, and I'm tired. It was a good day overall, mostly because it started with yoga, and no matter what that brings up, it still feels better to start the day that way."

And so it goes.

Music to Grieve By

2009-10-18T12:46:00.000-07:00

So today I thought I'd write about some of the music I listen to that is most helpful as we live with Mom's care. And the truth is, it is music to grieve by. Every day as I watch Mom deteriorate, even slightly, the grief continues and accumulates. It's as wearing as her daily care. It is, in fact, almost inconceivable, which is why finding something like music that acknowledges grief, accesses it, and/or comforts it is something I spend time thinking about.

(Warning: I'm a Lilith Fair kinda gal, which explains the pool from which I dip. )

The most obvious choice is Rosanne Cash's Black Cadillac (2006). Written after losing her stepmother (June Carter Cash, d. 5/15/2003), father (Johnny Cash, d. 9/12/2003), and mother (Vivian Distin, d. 5/25/2005) in the space of two years, the album is clearly a personal portrait of loss. At the same time, Cash leaves room for the listener to access his or her own grief, whatever that may be. Two of my favorite songs include "I Was Watching You" and "God Is In the Roses." Throughout the album, Cash speaks directly to, about, and for her parents, especially her dad, Johnny Cash. In "I Was Watching You," she speaks to him, singing, "All these years to prove how much I care / I didn't know it, but you were always there / until September when you slipped away / in the middle of my life / on the longest day / now I hear you say / I'll be watching you / from above / cause long after life there is love."

Lest you think she gets maudlin, in "God Is In the Roses," she takes the stock image of a rose and makes it concrete and real, playing, I believe, on the cliche, "God is in the details":

God is in the roses
the petals and the thorns
storms out on the oceans
the souls who will be born
and every drop of rain that falls
falls for those who mourn
God in in the roses
and the thorns

The sun is on the cemetery
leaves are on the stones
there never was a place on earth
that felt so much like home
we're falling like the velvet petals
we're bleeding and we're torn
but God is in the roses
and the thorns

If I could play one song at Mom's funeral, that would be it.

There is also Cash's song "September When It Comes," from her Rules of Travel cd. It's her only recorded duet with her dad, and it's unbelievably touching. He was clearly weak when they recorded it, and his voice is a little scratchier than usual. Plus it's about aging, and was recorded in his last years. I heard Rosanne interviewed on NPR's "Fresh Air" after it came out, and the whole concept of the song and performing it with sick father was incredibly moving. Here's one verse:

"I plan to crawl outside these walls / Close my eyes and see / And fall into the heart and arms / Of those who wait for me / I cannot move a mountain now / I can no longer run / I cannot be who I was then / In a way, I never was." To hear Johnny's voice creaking a little on that verse is poignant, to say the least. And then for him to actually die in September--that's synchronicity.

Another album that gets frequent play around here and helps me keep in touch with my grief is Annie Lennox's Songs of Mass Destruction. While not specifically about grief, both the tone and lyrics set the mood. Most notable for me is the song "Dark Road." It was on this morning, and these lyrics jumped out at me: "I can't find the joy within my soul / it's just sadness takin' hold / I wanna come in from the cold / and make myself renewed again / it takes strength to live this way / the same old madness every day / I wanna kick these blues away / I wanna learn to live again." It's not that I feel my life is that oppressive all the time, but sometimes you just have to give vent. Another song on this album that gets me is "Lost." On this one, it's not the lyrics as much as Lennox's plaintive voice wailing that one line, "We're lost." It speaks grief to me, and speaks to my own grief, watching my mother die by degrees.
Of course, Lennox plays some much stronger, driving songs, and those can help process feelings, sometimes regardless of the lyrics. It's a very addictive album.

The other album on my most frequent rotation list really has nothing at all to do with grief, but Sia's singing is moving nonetheless. Some People Have Real Problems is my favorite, but Colour the Small One has some great songs, too. I got interested in Sia after seeing her phenomenal video for "Soon We'll Be Found." I'd never seen anything like it. Then my granddaughters fell in love with it. If Sia is playing now, and that song comes on, Avri freezes and says, "Listen! It's my favorite song!" She and Kiana try to do the signing then (she does some ASL in the video), but that usually evolves into general interpretive dance. Anyway, Sia is a great one for a contemplative soundtrack.

Looking at an incomplete list of my itunes music, the Beatles get several mentions ("The Long and Winding Road" being the first one to pop into my head), Elton John a few (see, I do listen to some male music), Peter Gabriel, and a few odd other assorted characters. More to be added? No doubt. I could revisit this topic over and over, I believe.

Incredible tenacity

2009-10-03T13:41:00.000-07:00

Well, apparently this positive thinking isn't working as well as I'd hoped. Six weeks since the last time I wrote. Honestly, though, I did feel like writing again the day after I wrote that last post, but I had so many other things to do, I waited. And then I just had so much to do. How does one get out from under this?

I have work. I only work part-time, but it is teaching, which always needs more time than you have. Right now I've got two sets of assignments for each of two classes to grade and return. And this is my afternoon off, so I won't do it now.

Besides my "regular" job, I have Mom. And we do get paid for taking care of Mom. Though I prefer my oldest brother's way of saying it: "If you don't have enough money to live on, then you won't be able to take care of Mom." So we get paid by her trust (thanks, Grandma, for willing enough money to Dad that Mom can be provided for after his death!)

Mom is still holding on with incredible tenacity. She's down to 97 pounds, fully dressed, and she's all muscle and resistance. We try to get her dressed in the morning, and she clamps her arms to her sides, and steels her knees so they can't be separated. We try to get her to drink, and she won't swallow. We try to brush her teeth, and she grabs our wrists with a grip that leaves bruises. It gets frustrating, and no one really understands what it's like. Half the time I don't even understand what it's like. I think about how much time her care requires, and sometimes I wonder how she can so completely zap my energy. Then I think about the battles we try to fight on her behalf (the latest being with her day care about the absence of safe parking they provide), with her battling us at the same time, and I don't have to wonder. But keeping that awareness present, so I remember that I'm not crazy or whining, is difficult.

Now that I've started writing, my mind is uncovering all sorts of threads to write about. Can I retain them for more than a minute?

We almost folded the other week. We have three cats and a dog. Our cats our 13 and 14 years old, so they have some health "issues" of their own. One has a special food to prevent tartar build-up on her teeth. One has arthritis, so needs to eat a soft food we can mix her Cosequin into. The third one has kidney disease. We almost lost her last November, but she's doing really well now, thanks to a special food she doesn't like and to twice-weekly subcutaneous treatments. If you're not familiar with what a subcutaneous treatment is, it's basically giving her an IV. Which she hates. We bought a special bag to bind her in so we can control her long enough to stab her and squeeze 150 mls. of fluid into her. We have to feed the three cats separately since they each have their own special foods.

Then two weeks ago we had to take Cleo the wonder dog in for a teeth-cleaning. She had to have two broken incisors removed, which put the cost at you-don't-want-to-know, but worse than that, she wouldn't eat, had accidents overnight, and had diarrhea for ten days in a row. That was the straw that came perilously close to breaking the camel's back. I really was not sure I could take care of one more living creature. Oh yeah, I was simultaneously conferencing with my freshmen, what they call "developmental advising," making sure they weren't failing school and/or suicidal. It was a lot all at once.

But, here I am, with an afternoon off, but ending this post before I tell EVERYTHING there is to tell. Jeanne wants to use the computer as we sit here in Starbucks, and I really should let her. Besides, I don't want to get into the habit of this writing thing. People might get the wrong idea.

p.s. I am aware of the irony that I need to take an afternoon off from caring for Mom in order to have time and energy to write about caring for Mom.

Trying to think positively

2009-08-16T12:41:00.000-07:00

Mom smiling, 5/29/08 1:30 a.m.

It happened rarely enough even a year ago to make it a picture-worthy occasion.

I feel like this blog, though I seldom write to it, is too often negative. Perhaps I've been inspired by Julie & Julia, but I can't help but wonder why anyone would want to read this. And maybe that's not why I'm writing this--it's not my 'stated' reason--but still . . . . If it didn't matter if no one reads this, I would just be writing in my journal. By the way, I don't write in my journal at all anymore, and haven't for years, so I guess I'm not doing too badly by this blog.

Anyway, I've decided to try to write about the positives of caring for Mom. Unfortunately, at her stage of the disease, those are few and far between. This morning, for example, Mom smiled when we woke her up. She smiles now about once every 3 or 4 months. The neurologist says she has lost the ability to smile. But this morning, she looked just a little like she was smiling, and when I spoke to her with my own big smile, the left corner of her mouth turned up just a little more. Enough to qualify as a real smile. But not enough to see in a picture.

After Mom was diagnosed with Alzheimer's, back in '96 as far as we can tell, she did well for quite a while. Once it became more and more apparent that she couldn't live alone much longer, Jeanne and I asked her to come live with us, not because of obligation, but because we loved her, and enjoyed her company, and we wanted to do this for her. When the time came that she did indeed need to move in with us, it was still sometimes hard to tell how advanced the disease was. We still talked, and laughed; she even voted in the 2004 election via absentee ballot. We asked her if she wanted to, and she said yes, as long as we didn't tell her who to vote for. We watched the Kerry-Bush debates, discussed them, and let her come to her own conclusions. She had definite opinions. Then I helped her fill out the ballot and mailed it in. She didn't like to order her own meals at a restaurant anymore, but she always took voting pretty seriously. That was a decision she still wanted to make.

Her disease has advanced slowly, which allowed for some quality time in those first couple of years living with us. But she no longer has that quality of life. She rarely responds even to our granddaughters or the dog, and they used to be the light of her life. Mom is enduring more than she's really living.

Jeanne and I did, as alluded to earlier, see Julie & Julia earlier this week. It's a wonderful film, and Meryl Streep is an absolute delight as Child. Afterward, I couldn't help but think, "Mom would have liked this movie. Unless, of course, it would have made her feel inadequate about her cooking." Mom was a great cook, but did not try anything remotely Julia Child-ish. Confidence--about anything--was not her strong suit. Her most elaborate dish was Beef Wellington, which my dad insisted she learn how to make after having it at a hospital fundraiser. She made it every year for Christmas until too many of us became vegetarian to make it worthwhile. She may have watched Julia on occasion; she liked her, though her favorite cooking show was "The Galloping Gourmet." Still, I believe she watched these shows for entertainment. She was interested in their cooking at the spectator level, not the aspiring gourmet chef level. At least Mom still likes to eat. And believe me, the quality of the food matters. She's not picky, but if she doesn't like it, she won't eat it. There are some aspects of quality of life that still matter to her.

88 here we come?

2009-07-26T14:45:00.000-07:00

Mom and Cleo, 6/5/09

Today is Mom's birthday. She's 87, and going stronger than imagination can fathom. Every time I think she's heading for her final decline, she rallies. Some months ago I was sure she'd be gone by or around Christmas, but now I think she could keep going another year or longer. Her weight keeps dropping; at last measure 2 weeks ago, she was down to 98 lbs. with all her clothes and shoes on. But she is strong, strong, strong.

I can't believe she's happy to be alive. Nothing brings her happiness anymore, and the only things she likes to do are eating and sleeping. Her level of awareness, while low, still shows some amazing windows of clarity. She can be sitting in her wheelchair, eyes closed, refusing to respond, and then you ask her if she wants some chocolate. She still won't open her eyes, but up comes her hand, as she reaches for the chocolate. And if you tell her she needs to do something before she can go to bed, she will stop resistance and cooperate. But I don't think she knows I'm her daughter. She knows both me and Jeanne, but I don't know that she recognizes us beyond "those people who are always making me do what I don't want to," like drink, transfer from the chair or bed to any place else, get dressed, etc. She does usually recognize that I play the good cop and Jeanne plays the bad cop (Jeanne does enforcer better than I do).

We took her off both Aricept and Namenda. We were told it would accelerate her decline. If anything, she seems more alert now. Someone said that she's clearly not ready to die yet, though we don't know why she isn't ready to let go. So we keep schlepping on, trying to stay whole and healthy and sane. Then again, were we ever all three?

Where does the time go?

2009-06-05T13:42:00.000-07:00

It's been a while since I last wrote. So much for writing at least once a week. I'm not sure why I haven't been able to write. We missed a lot of time at yoga as well. Yoga and writing the blog are both activities meant to help us survive caring for Mom. Funny how those are the activities that get dropped when time seems to run short. That resolution to relax and live in the synchronicity as we did on vacation seems to have suffered a terrible death. Let's see how my powers of resurrection are working. We started back to yoga this week, and went both days we had planned. And though I spent a good chunk of time devoted to writing today sleeping in Starbucks, here I am, writing again.

How's Mom doing? The Energizer Bunny keeps on going. We discontinued her Aricept, something her neurologist said we should do the next time she had a downturn. At this stage of Alzheimer's, it appears only to prolong her life. Prolonging her current state of misery is doing her no favors. So when we returned from vacation, we assumed she would be worse, and stopped the Aricept. She wasn't any worse; in fact, she was surprisingly alert. We stopped the Aricept anyway. Then we met with the neurologist again, who this time suggested we could stop the Namenda. Both Jeanne and I had the understanding from our previous meeting that she thought the Namenda might have some behavioral benefit, and we could keep that going. This time, she said there is no medical benefit from the Namenda without the Aricept, and there was no reason to keep her on it. We were confused by the change. I called Mom's primary care physician, who is not an expert in Alzheimer's and she said she would research it. After a week, we decided to take Mom off the Namenda, even though Dr. Barb had not yet gotten back to us with what she found. That was about 2 weeks ago, and again, we see no difference.

Okay, it is now a few days later; once again, time slips away.

To continue, Mom is now off both the Aricept and Namenda. Given our confusion about taking her off the Namenda, I tried doing a little online research, and couldn't really find anything except for other caregivers and those with Alzheimer's writing in to different forums debating the use of these medications. I was surprised by how many complained of side effects and discontinued the meds. Mom went on Aricept while she was still living on her own. She didn't tell me when she first went on it, so I never noticed a difference. If she did, she didn't say. She started the Namenda after coming to live with us, and that made a positive difference. Her degeneration before Namenda consisted of plateaus, then a sudden drop in functioning. It was incredibly hard on all of us. We'd go along, thinking things were okay, getting used to whatever level she was at, then without warning, there would be a sudden, heart-wrenching degeneration. The Namenda smoothed that all out. No more plateaus, and no more falling off the edge of a cliff. The gradual slope of degeneration is much easier to manage and adapt to.

Right now, Mom is nonverbal. She can neither walk nor stand without help, and even with help it's a struggle to do either. Her body is becoming more and more rigid. It's a process the neurologist calls 'disinhibition.' The word is counterintuitive to what I see happening, but she explained it by saying that the mind tells the muscles to relax; otherwise, the muscles' natural state is to be contracted. As the brain shrinks due to Alzheimer's, it loses the ability to tell the muscles to relax. Thus they become more and more rigid, tight, and inflexible. Who knew?

Home again

2009-04-27T08:20:00.000-07:00

It was two weeks ago today that we left New Orleans. We had a great vacation. I finished the paper the night before the presentation, and the presentation went very well. Interestingly enough, Mom did try to bring us back early. We arrived on Tuesday, and on Wednesday started receiving phone calls from the nursing home. Mom had pneumonia. They were keeping her home from daycare, and her doctor was coming to see her that afternoon. Pnemonia in someone my mother's age and condition could easily be fatal. But going home would accomplish nothing but the cancellation of our vacation.

Mom has a history of falling every time we would try to take off for a few days. Either at home just before we left, or the first time we put her in respite, the first day at the care center; that time she broke 4 ribs. And made an amazing recovery. My thought upon hearing of the pneumonia was that she can't get up on her own anymore, so she can't fall; instead, she'll get sick in order to try to bring us home.

Luckily, her doctor, my college friend, saw her that afternoon. She called and left a voice mail at our hotel that allowed us to enjoy the rest of our stay without worry about Mom. Dr. Barb looked at the x-ray, which she said was not of good quality. She said that what looks like the beginning of pneumonia could also be the result of Mom's shallow breathing. She had a cough, but was already perking up from her morning lethargy. She said not to worry, stay and have a good time. Knowing that the nursing home and Dr. Barb were now in communication (the charge nurse at the home kept commenting on how nice Dr. Barb was!), and that there was nothing we could do anyway, we let go and enjoyed ourselves.

We walked, and ate, and listened to music, and ate, and took tours, and ate. Great seafood--we had such terrific chargrilled oysters at Acme House, it's one of two places we went to twice (the other was the little middle-Eastern diner a couple of blocks from the hotel where they made the felafel as you waited--fresh and tasty!). We had great shrimp and red beans and rice. New Orleans is not really a town for vegetarians; thank goodness we eat seafood.

I loved walking the streets of the French Quarter, looking at architecture and people so different from what I'm used to. The people were so incredibly open, stopping us on the street just to have a conversation. None of that friendly Midwest reserve. And the history! The first tour we took was a Haunted History tour, which really was about the history of New Orleans and the French Quarter, and some of its many supposed hauntings. At one point I mentioned to Jonathan, our tour guide (who is a natural-born storyteller) that one thing I liked about New Orleans is that they are not always trying to modernize and upgrade everything. "Thank you for noticing," he replied. "New Orleanians don't just love their history, they live history." And I must say that most people we talked to were extremely knowledgeable about the history there.

In addtion to the Haunted History tour, we toured the Bayou, and on Easter Sunday we tried to tour one of the cemeteries (more about that in a minute) and we took a Hurricane Katrina tour. There is still so much devastation from Katrina; houses that have been renovated interspersed between the vacant lots where houses used to stand and the still ruined shells of houses. It was sobering. The picture on the right shows the building of two houses by Brad Pitt's organization, Make It Right 9, behind the vacant lots of demolished homes.

The cemetery tour almost made for a great story. We arrived at the gates of the St. Louis I cemetery at the posted time, and the gates were locked. Other people arrived and left, but we hung around. Eventually the tour guide showed up, but he didn't have a key. The police are supposed to unlock the gates on the weekend, and he never showed. So Walter gave us the external tour, took us around the walls, explaining the above-ground tombs and how they worked. There are 3 gates, and at each one he showed us what he could from our limited vantage point. He also suggested that we climb the gate. I hesitated, only because I have bad knees, and had to be sure I could both get in and out. Before I could respond, Walter said he would go over, take my camera, and take some pictures. So I do have a picture of Marie Laveau's tomb. She was the Queen of Voodoo in New Orleans in her day, a famous historical figure. What a great story it would have made if I could say I broke into a cemetery on Easter Sunday! I keep telling myself I could lie for the sake of the story, but so far have not been able to bring myself to do it.

Pictures from the bayou:

And now we are home again, and life has returned more or less to normal. We really did get away in NOLA, and were able to be present in the moment. And we're trying to hang on to that now that we're home, and life is so different. Here's hoping we succeed.

Vacation

2009-04-06T08:24:00.000-07:00

Well, tomorrow Jeanne and I get our first vacation together in over 5 years. We're going to New Orleans for a week, where I'll present a paper at a conference, and we'll play the rest of the time. It's so hard to get away, and requires a fair amount of work to prepare. Yesterday we took Mom to the nursing home where she'll be staying for 11 days. We gave ourselves a few days before we leave and after we come back; it's hard enough to get ourselves ready, but getting Mom ready is a project itself. In addition to packing what she'll need, we have to make arrangements with the nursing home, make sure they get new doctor's orders, arrange the van to take her to and from day care, notify my siblings, make sure all paperwork is in order just in case, give instructions to the day care about things they should watch for since they know her better, write out instructions and an inventory for the nursing home, and it goes on.

I'm tired, but looking forward to getting away, sleeping through the night, and seeing New Orleans, where we've never been. We hope to come back rested and rejuvenated, especially since Mom is more work after she's been in respite. We work pretty hard at keeping her awake and alert and moving when she's with us, and that just doesn't get as much attention where they have multiple patients to care for. She regresses in respite, and because we're trying to keep her as present as possible as long as she's here physically, we have to work to bring her back to where she can be.

She is losing weight. When they discharged her from hospice, she was 115 lbs. Then at the doctor's she was 112. Her last respite stay was 110, and yesterday she was 107. We'll see where she's at when we come home. I think the end is coming, faster than it was before, but with the Energizer Bunny, who knows what that really means?

I'll write when we get back, and maybe paste in some pictures of New Orleans revelry!

The Granddaughters

2009-03-27T08:54:00.000-07:00

Jeanne and I have two amazing granddaughters, Kiana, who is almost 5, and Avri, who is 3. They come and spend a day with us once a week. Mom has always loved kids and babies, so for as long as she could still smile, even if she had nothing else worth smiling at, she would smile when the girls were here. Though she doesn't smile anymore, we can still see her interest in them, as she watches them pretty attentively, which again, she doesn't really do with anything or anyone else.

Kiana has a hard time trying to understand the changes in Mom. We tell her that Mary is sick, and Kiana herself says, "Mary isn't alive anymore." That's not far from the truth. She remembers dancing with Mom. She came across this picture a couple of weeks ago, and was so excited. "That's me dancing with Mary! We used to dance together!"

A few weeks ago, we were sitting around the table, holding hands to say our 'gratefuls' before dinner. We pretty much leave Mom out of it if she's started eating, because she doesn't like to stop eating long enough to give us her hand. But Avri reached towards her, and Mom actually reached back and took her hand. Kiana was amazed. "Look! Mary's coming alive again! She took Avri's hand!" She was delighted and so encouraged, thinking that Mom could improve. She hears that Mom is sick, so her experience is that when you get sick you get better again.

Here's a more recent picture of Kiana and Avri with Mom (9/08):

We had hoped that Mom would live long enough so that Kiana will be able to remember her, and I think we may have reached that point, especially if we regularly talk about Mom and look at pictures. I don't know if Avri will remember her, especially since she has never been able to have the kind of relationship with Mom that Kiana has. But Avri is not afraid to hug Mom, and will still sometimes spontaneously embrace her arm. Kiana has become a bit leery of Mom. She doesn't know how to act around her when she gets no response. Hence the "She's not alive" comments.

Being with these growing girls is an important part of us being able to continue to care for Mom. Their youth and enthusiasm help us deal with Mom's continual decline toward death.

While Mom Eats

2009-03-23T16:32:00.000-07:00

All I need to do to insure that I'll stop writing regularly is to write that writing is good for your health.

I have a few minutes while Mom is eating. It's the only thing she can still do on her own, except for sleeping. With her meals, we give her finger food that isn't too messy, and cut it into bite-sized pieces. Tonight she's eating salmon, vegetable medley (green and yellow beans and baby carrots) and strawberries. She has always loved fruits and vegetables, so getting her to eat healthy is not a problem. She can no longer use utensils, so eats it all with her fingers. She still has an amazingly good appetite, especially for a woman of her size. At this time of night, however, all she wants to do is go to bed, so keeping her awake and focused on her food is the big challenge.

The latest development with her health is that she has developed a problem with her right wrist. Though right-handed, she's been functioning as a lefty for years, protecting her arthritic right shoulder. Late last week, her right wrist started hanging as though limp. Her arm is not limp, and she still has plenty of grip strength in her right hand. We bought her a wrist brace and called her doctor, who suspects that it's wrist drop.

When Mom was receiving home hospice, they would occasionally send out Maureen, the most amazing Occupational Therapist. She was a miracle worker with Mom. We knew that she worked for a home health agency in addition to the hospice, so we called her to see if she could come out to provide some help for Mom. Long story short, the agency won't send anyone out to help. Even though Wikidoc says physical or occupational therapy can help (and what self-respecting health care provider doesn't rely on Wikidoc?), they say there is nothing they can do. Nothing they are willing to do seems more to the point, and that opinion comes from previous experience trying to get private physical or occupation therapy for Mom in the home. Basically, Medicare pays so far above the billing cost, they won't bother even with private pay home care, since it only pays what they're asking, instead of above and beyond. And you wonder why we're frustrated with the health care system?

Beginnings

2009-03-13T09:18:00.000-07:00

Everything has a beginning. Our life together, that is Barb's and my life together. Our life together with Mary, both while she was still on her own in Green Bay/Sister Bay and once she came to live with us. There's the beginning of the Alzheimer's and the beginning of our really providing care for Mary. And with time, some of these beginnings have become fluid, have begun to run together.

They go unrecognized or, maybe, just seem unrecognizable. Some go unrecognized by choice. Others become repressed memory, I suppose. Still, something inside me says that trying to sort through, to recognize and articulate some of our beginnings might be helpful, helpful to you, the reader, as you follow along with us on this jouney we're on, Mary, Barb, and me. And helpful to us as we continue our journey.

One of the first and most consistent questions we hear is "When did she start . . . ." When did she begin chewing her pills instead of swallowing them? Then, the follow-up, "Have you tried . . . .? Have you tried grinding them up and putting them in pudding, applesauce, to hide the disgusting bitterness of the medicine she has to swallow?

From the beginning, she's been incredibly creative in adapting to her illness, to organizing her life of diminishing skill, in an attempt to maintain as much independence as is possible; possible given the many dead ends that pop up each day.

Barb began this blog in hopes of finding some relief from the particular stress we live with. Her mother, Mary, fades further into a fog each day as Alzheimer's does its work, that is, as the disease obliterates greater and greater chunks of her brain. Mary lives with us and we are her primary caregivers. Barb invited me to blog along with her. She wondered if I might find contributing to this blog helpful, too.

Like so many things, time will tell.

This week, as I began preparing to write, I discovered our brand of stress is being considered, is in the running for inclusion in the newest DSM III. Caregivers' Syndrome is what some are calling it. The arguments for and against identifying our stress as a "Mental Illness" are the familiar arguments, "legitimatize/stigmatize." Proponents say that idenitfying it in this way will make it more real, make it legitimate and provide ways for those suffering from it to realize they need help, to find pathways to the help they need. Opponents say that naming it will label those suffering with it and push them deeper into the isolation that accerbates the suffering they experience. I'm not sure I want to write about identifying or naming, about stimatizing or legitimizing, about opponents or proponents. Such arguments don't interest me the way they may have once.

I do know, for me, this is a beginning, writing to Mary in this format. Last year, I worked with a writing coach for a while. She suggested that I write my letters to Mary and put them aside to sort through and edit, to review and revisit later. That approach has not been very helpful.

So, I'll begin anew here, to make my contributions here as letters to Mary - for myself. And we'll see how that goes.

welcome to our journey,
jes

Free Association after Respite

2009-03-10T12:34:00.000-07:00

Tonight Mom comes home from her 4-day respite stay. I got a phone call this morning at 6:45 from the nursing home. They noticed her right ankle was swollen and red. It's not unusual for Mom to have edema in her ankles, especially the right one. We put her feet up on a foam wedge overnight, but we don't ask the nursing home to do it. When we got to the facility to take Mom to day care, the ankle was bright red, which is not so common, and it was hot. She might have cellulitis, the nurse suggested, and the day care nurse seconded that guess. We'll watch it for a few days, and if necessary, contact her doctor for an antibiotic.

Other than the ankle situation, Mom seemed more alert than she did yesterday morning. We also found out that yesterday morning they gave her a shower, which would explain her lethargy. The whole shower/bath phenomenon wears Mom out. We give her a sponge bath every morning, which is not so hard on her, but we have the day care give her a tub bath once a week. It's a special tub where she transfers from her wheel chair to a chair that slides into the tub, and fills up to near her shoulders, I think. So it's more vertical than horizontal. It doesn't help that Mom has always been slightly afraid of water, especially any water that gets in her face, like a shower.

Mom's fear of water is one of the best indicators of what she would do for her children. Until I was in second grade, we lived across the street from a YW, so Mom dutifully took us to swim classes there, but did not participate herself. We would spend a week or so every summer at my paternal grandmother's cottage on Lake Bemidji in Minnesota. It was a wonderful place on a beautiful lake (my grandmother was a different story, maybe for another time), and Dad loved going out fishing with Grandma in the boat; we kids would often go along, though Mom usually opted out. But nothing kept us from swimming and playing in the lake as much as possible. Mom would often sit on the deck to supervise, and on occasion would venture in the water herself.

It took me years to recognize how both the swimming and the boat rides required extra sacrifice on her part. Her fear of the water made those experiences unpleasant at best for her. Eventually, Mom even took her own swimming lessons at the YW, so she could feel better about watching us in the lake and in hotel swimming pools on our longer family vacations. In my mind, that was a true act of motherly selflessness, confronting her fear in order to take better care of us. She never complained about her fear of water, and would just mention it once in a while if we would nag her about joining us for a swim or a boat ride. We were all water-loving tadpoles, and in the self-absorbed way of children, couldn't seem to retain awareness of Mom's aversion to water.

One more story about Mom's fear of water. After Dad died (1991), we would all do our things to give her some social outlets. One time my brother John went to visit her, and took her to the movies. Mom didn't particularly like movies either, or at least, she was very particular about which movies she liked. She loved On Golden Pond, for example, which did not fit with her water phobia. But when John took her to see Titanic, that was too much. She told me the next time we talked that she didn't really like it much, especially the scenes with all the people in the water after the wreck. I still have never seen Titanic, but have seen bits and pieces, including the part she referred to. It would never have occurred to me that the film would cause her a problem. To this day, I don't know if John knows those scenes bothered her.

Writing for Health

2009-03-06T09:01:00.000-08:00

Some new evidence that writing is good for your health: http://www.utne.com/Some-Writing-Each-Day-Keeps-the-Doctor-Away.aspx

For this very reason, and because writing once a week seems a bit paltrey, I am going to try to write more often, even if the posts are shorter.

On a related note, I'm a little concerned that my last post sounded like whining. But today, I'm tired. Mom goes into respite after day care today. She'll be in through Tuesday, though on Monday we pick her up, take her to day care, and then take her back to the nursing home after day care. On Tuesday we check her out of the nursing home, take her to day care, and then bring her home afterward. It's not much, but it means we can go out to dinner tonight, we can do whatever we want on Saturday and Sunday, including the Art Crawl on Saturday night and Jeanne's birthday celebration on Sunday. I'm on Spring Break next week, so we'll have the days while Mom is at day care to do what we want. And we get to SLEEP. These are all things we either can't do, or are constrained in doing when Mom is home.

In arranging the respite with Mom's doctor, I was leaving a voice mail and completely blanked on my cell phone number. When she called back, the doctor affirmed that if I can't even remember my cell phone number, I must really need the break that respite provides.

I also realized in thinking about my previous post that I hadn't really said anything about Mom. She is, as one of my stepdaughters said, "a tank." Other than the Alzheimer's and some arthritis, she is completely healthy, and very strong. Yet it is harder and harder for her to walk or stand, even with assistance (she can do neither on her own), because her brain can no longer send the proper signals. She was taken off hospice care after a year of mental degeneration, but no significant physical degeneration. They said there was simply no evidence that she would die in the next 6 months. I think she doesn't know how to let go; I can't believe she still wants to be alive, given her condition. And I don't know what to do to help her.

Being Tired

2009-03-01T09:31:00.000-08:00

It's late Sunday morning. Mom is napping, so I get a chance for what I hope to be a once-a-week blog. I'm tired. Jeanne and I are tired all the time. Though Mom goes to bed early--around 7:00--we don't eat supper until she's in bed. We watch maybe an hour of tv, then clean up, take Cleo out one last time, and try to be in bed between 9 & 10. Last night we rented Changeling, which at 140 minutes, kept us up later than usual.

Every night we get up sometime between 1 & 3 a.m. in order to change and toilet Mom. Even with the super-duper Depends we rig up for her, if we don't change her once a night, she and the bed will be soaked by the morning. This process usually takes a half hour, and then we often end up talking before going back to sleep. It's one of the few times we're not doing something else, and besides, there just always seems to be more to talk about at 2 a.m. than at 2 p.m.

So last night we talked for another hour after taking care of Mom. Then I went right back to sleep, as usual; it's never that easy for Jeanne. On the weekends, instead of getting up at 6, as we do during the week, we sleep in until sometime between 7 & 8. We skip our showers, and just go downstairs and get Mom up.

This nightly sleep interruption takes a toll on us. The reason I chose this topic to write on today is because here it is, the middle of the day, and I just want to rest my head, which feels like it weighs 40 pounds. Today we'll have time to take a nap later, but napping when Mom does means not getting our own work or leisure done during that time. When she's awake, we're feeding her or toileting her or trying to keep her awake so she'll sleep at night. There's always a trade-off. Simply put, caregiving means never getting enough sleep.

And while that's true for parents of infants as well, slowly that continues to improve. As the child grows, so does hope that a full night's sleep will one day be possible. For me, I can only hope for a full night's sleep for those few days a month we put her in respite care (temporary nursing home care), and when she dies. It will not get better before then.

And now it's time to get Mom up from her nap.

How it began

2009-02-22T14:17:00.000-08:00

Mom had been diagnosed with Alzheimer's for a few years before we began being concerned. First off, she was never completely clear about how definitive the diagnosis was. The doctor never called her back, she said, so she called the office and spoke with the nurse. Secondly, she seemed to be have more mild memory problems than the kinds of symptoms I associated with Alzheimer's. "You probably do have some type of dementia," I would tell her, "but I don't think it's Alzheimer's." My brother John made her stop driving after he learned about her accident. I wasn't so sure; I'd seen the police report stating it was not her fault. Then we found out about the previous accident she hadn't told us about. A letter from her insurer came saying they were discontinuing her insurance. A friend from church helped her sell the car, and John showed her how to ride a local cab service around town.

Of her 4 children, none of us lived in town. My oldest brother, Paul, lived the closest, just about 20-30 minutes away. John and I each lived 2 hours (in different directions) from Green Bay, and my sister Kathy lived in Seattle. Dad had died 13 years earlier. Pretty soon Jeanne and I were driving up every other weekend to take her shopping, pay her bills, and make meals to put in the freezer. Meals on Wheels delivered her a lunch on the weekdays. Eventually, the siblings agreed that we needed a family meeting to decide what to do, since it was quickly becoming clear that she could no longer live alone. In the meantime, Jeanne and I had been asking her if she would be willing to come live with us. She always said that no, she didn't want to be a bother, and she would go to Woodside, the Lutheran nursing home Dad died in. She didn't want to live in Milwaukee. Shortly before the family meeting, we tried again.

"Mom, what if we bought a house outside of Milwaukee? We could get a dog!" Mom loved animals, but refused to get another dog after her beloved Westie, Touzie, died years before. There was too much pain in losing a pet, and she was concerned about being able to continue to care for a dog. This time she agreed.

The family meeting was in January, 2004. Maybe I'll go over the details some other time, but the outcome was that all agreed that Mom would come live with Jeanne and me, and that we had better hurry up and find a house.

Mom spent Easter weekend that year with John and his wife Vicki. He called me that weekend, saying that he would not let her go back and live in her condo alone even for another week. We'd actually found a house already, had our offer accepted, and the closing date was near. But we still lived in our warehouse loft apartment. We weren't ready for Mom yet, but we made it happen. She lived with us at the apartment until we were able to move our stuff and her stuff from her condo.

That was just about 5 years ago. This blog is meant to be my way of continuing to process all that caregiving entails. The rigors and stress of careiving are not something I could ever have anticipated. Would I have agreed to do it if I'd known? That's a question I can't answer.