Happy Birthday, Mom

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

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

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

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

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

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

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.