My mother, Mary, is in the final stage of Alzheimer's. She lives with my partner and me, and we are her primary caregivers. This blog is about Mary, her care, and trying to deal with the stresses of caregiving. *** Mom died of Alzheimer's on Feb. 12, 2010. She died at home, in bed, with Jeanne and I at her side. She has found peace at last.
Sunday, November 28, 2010
The Six Stages of Grief
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.
Tuesday, November 16, 2010
Next
The 3 girls in their youth
Juno
Juno and Selu, sisters, in one last photo
Friday, August 13, 2010
Happy Birthday, Dad
Thursday, August 12, 2010
Another milestone
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.
Friday, August 6, 2010
Pilgrimage
Friday, July 23, 2010
Anniversaries
For me, this is also a time to remember these anniversaries. I try to stay focused on the happy memories.
Thursday, June 17, 2010
Grief redux
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.
Sunday, April 25, 2010
Love
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.
Saturday, March 20, 2010
At the Hairdresser's
It's amazing indeed.
Sunday, February 28, 2010
The End of a Long Journey
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
Tuesday, January 5, 2010
Now or Never
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.