Archive for November, 2008
Her Name Was Beebe
I have been losing my mom, bit by bit, for at least the last seven years, whenever it was that Alzheimer’s first began its dirty work. I lost the rest of her this afternoon as I stroked her hair and told her how much I loved her. Jennie and I said good-bye as she took her last breaths, hopeful that she heard our voices, felt our caresses, and knew in her heart, if not in her mind, how much she was loved, what a good mother and grandmother she was, and how many lives she touched with her gentle spirit. We told her that she would live in our hearts forever, and she will.
Beebe clung to life longer than any of us expected, surprising two sets of hospice carers over the last 27 days as we kept vigil, first at the Alzheimer’s facility where she had lived for almost three years and at the hospice care center where she died. (Beebe’s obituary.)
I have made Beebe’s struggle with Alzheimer’s a public one. Sharing it has helped me deal with the grief and frustration of losing her over the years. It was also the only way I could think of to fight back. Connecting with others who walk along the same path has given me strength. Knowing that our journey has helped others cope has kept me going. Reading the comments you have written over the last month especially have given me comfort.
My job as personal advocate for Beebe is now over. The part of my brain that had to keep track of her safety and well-being, the minutia of caregiving, can now be filled with other pursuits. Although I will continue to fight Alzheimer’s in her memory, it is time now for me to reconstruct that memory, to focus on the woman who was my mother, not just on the woman who had Alzheimer’s and needed my care.
For many years I assumed the role of her parent; now it is time to switch back to being her daughter, to remember her throughout her whole life certainly, but to refocus my memories of her before the Alzheimer’s. During the last year I had to retrain myself to call her Beebe instead of Mom. It never felt right, but she simply forgot she was a mother and wouldn’t know someone was talking to HER. So, she was Beebe to everyone, including me. Now I can call her Mom again.
Mom was a hoot. She loved to make things, to grow things, and to learn things. She had a slew of friends from all walks of life who always smiled when they were with her. She loved to laugh. You just weren’t the same after you met her. I’ve spent the last six hours trying out all sorts of ways to share what she was like with photographs and comments and I’ve come to the conclusion that my family pictures and quaint stories are only fascinating to me and a few friends who love me too much to tell me otherwise.
So, I thought I’d take another tack. I’m sure some memories with corresponding photographs will ooze out in the blog in the months to come, but for right now I’ll share some phrases that have been in my lexicon my whole life, thanks to my mother. As they’ve popped out of my mouth these last weeks I was reminded how uniquely “her” they are, except that she probably picked some of them up my grandfather because my cousins pepper their language with some of the same Beebe-isms!
When Steve and I married they became part of his vocabulary. When Jen came along they worked their way into the next generation. I want to share them with you because just recalling has made me smile. Maybe you will too and when you pass them along you’ll think of the remarkable woman who gave them to me.
WASH YOUR PAWS: You’d want to do this before eating, even if you use silverware but especially if you don’t. Similar to WIPE YOUR PAWS, like when you come in from outside and your shoes might be muddy. Also useful for small children when crossing the street: “Give me your paw.”
TROWEL: Something you dry your paws on if you’ve just washed.
SHOVEL OVER: What you tell someone you want to sit next to when they are mostly where you want to put your butt. Could be a sliding over in the back seat of the car, on the sofa, or on the front stoop.
MAROON: A sad discovery of limited intelligence that could have been avoided had the person just not opened their mouth and allowed the rest of us to simply wonder.
STOOP: So incredibly similar to a maroon that they are interchangeable. Nothing, however, like a front stoop.
DESTRUCTIONS: Sewing patterns come with them, so do children’s toys that need to be put together. You’re supposed to read them before you start.
ORAFICE: The place where you work. As in, “See you later, I’m going to the orafice.”
SPOOM: The eating utensil that is next to your knife and near your fork.
BERSERK: What you get to eat if you finish all your vegetables.
STOMACH CAKE: A kind of berserk with frosting. If it is served in honor of your birthday then it comes with candles and maybe ice cream which you can eat with a spoom.
TOOKIE: Another kind of berserk. Many people like chocolate chip tookies.
FLUTMEAL: Named for the sound this breakfast cereal makes when it is cooked on the stove: “flut….flut…..flut.” (Not Cream of Wheat.) Flutmeal also makes good tookies.
HYSTERICAL MUSEUM: Like the Art Museum, but the displays are about events of the past.
That’s it for now. I’m not going to make it in to my orafice for at least a few more days so if you would like to share a comment, please do so here on the blog. And now that I’ve posted I’m going to reward myself with a flutmeal tookie, Mom’s favorite kind. As always, thank you for your kindness and compassion.
Hospice Continues
Mom continues to fight with strength seeming to come from nowhere. She has allowed us to feed her small amounts of soup and apple sauce, Jello and other soft foods, some liquids, but I can’t tell you when that started because all the days seem the same to me. I can’t imagine how the small amount of food she has consumed can sustain her. She weighed 84 pounds sometime in October; I can’t imagine what she must weigh now. She looks more emaciated than any body I have ever seen.
Mom sleeps most of the time. She goes through periods of apnea when she stops breathing, sometimes for as long as 20 or 30 seconds and then starts up again. I try not to listen to each breath, but it’s difficult not to. When she is awake she stares upwards and to the right. I sometimes move to where she seems to be looking, but there is no focus there.
Her words are gone. It has been days since she attempted to speak. If she is startled her face shows panic. Although I don’t think she understands the words, telling her the bed is going to move, someone is going to change her, or roll her over, for example, goes a long way to keep her from becoming startled.
The beds at the hospice care facility can be lowered all the way to the floor to prevent falls. They put gymnastic mats on the floor on either side. It has been several days since I saw Mom even try to get out of bed. The staff no longer walks her to the toilet or commode. They change her and bathe her in bed. The most movement I’ve seen is when she tries to get her arms out from under the covers. She no longer can turn over herself. She has to be turned.
I am a little slower moving these days too, not surprisingly. Getting up in the morning is harder, getting ready takes longer, eating is a chore. The drive to hospice is about 30 minutes, along the same route to the elementary school I used to teach at. (Yes, I have gotten in the wrong lane exiting the freeway, my brain on auto-pilot and obeying signals from the early 80’s to go to school.)
I bring sewing and computer work to do, but don’t seem to get anything done. I hold Mom’s hand or stroke her hair, tell her I love her, and watch her breathe. I play music on my iPod for her, classical stuff mostly and songs from her era. I don’t know where the time goes. I sometimes go back after dinner to be with her too, but I’m trying not to if only to pace myself. At night I fall into bed, get up, and do it again.
The hospice staff has been excellent, and the idea of being actively involved in the dying process seems to make a lot of sense. Alzheimer’s complicates this, however. Verbal assurances of love, forgiveness, remembrance, and acceptance are communications Mom’s damaged brain can’t receive. Before this most recent decline she literally couldn’t hold a thought longer than a few seconds. Yet, recognizing this sad fact in my own brain doesn’t stop my heart from attempting it anyway.
I remember early on in the disease I was always taken aback, surprised, by her strange behaviors or lack of logic. She looked like my mom, her voice was the same, her mannerisms and speech patterns identical. Yet she would say or do the strangest things and I was always fooled. As the Alzheimer’s progressed her mannerisms changed, even her gait changed. I got used to the strange language, irrational thoughts, and odd behaviors. She looked and acted differently. I expected the Alzheimer’s when we interacted. Now, when she sleeps she looks so peaceful and remarkably “normal.” Her odd reactions to the world around her are so infrequent that I am fooled again into thinking her brain isn’t broken. Oddly, that seems to help.
Thank you for keeping us in your thoughts and prayers. It will take months for me to catch up with all my unread emails, but I do read each comment you post to the blog. I’ll get to the other stuff eventually.
Ami
Hospice Care Center
On Tuesday (Nov. 11) I moved Mom to the hospice care center. Although she had been receiving hospice care at the assisted living facility since mid-August, after her fall on Sunday (which could have been prevented) I lost all confidence that the assisted living facility could keep her safe. She is receiving much better care now.
Sadly Mom’s “recovery” at the end of last weekend, while spectacular in comparison to being totally non-responsive, only returned her to the cognitive level she was before the downward spiral: extremely confused and dependant on others for her most basic needs. She can’t, for example, remember how to sit. She has to be “cued,” the process broken down into micro-steps. She has to be supported and walked to the chair, rotated, coaxed to take a step backwards, told that what she feels on the back of her legs is a chair, her hands placed on each arm rest of the chair (a fairly long process if she is holding on to something else at the time) and told to bend her knees. Sometimes that won’t even help as she will lock her knees and refuse to bend. We re-approach and start again from the beginning.
Still, the few bursts of “clarity” she experienced, whether stray phrases from the past temporarily unlocked or true thoughts allowed to exit, were moments I will always treasure. With the “recovery” came a period of what I can only describe as hyperactivity. She was almost constantly in motion, trying to sit up, stand up, moving her arms around, reaching and “picking up” unseen objects, picking at her clothing, pulling at her fingers. I don’t believe she slept more than a few hours in two days.
She has not eaten anything since Tuesday and adamantly refuses food or drink whenever it is offered. We are by her side, just waiting. Her body is telling her it’s time, but her spirit just isn’t listening. I am not surprised. This is the woman who never wanted to leave a party, or stop sewing (or painting, weaving, or dying fabric) until she was ready to fall down from exhaustion because she was afraid she would miss something.
Without nourishment of any kind she is, amazingly, still able to stand and walk with assistance. She is alternately agitated and confused, or sleeping peacefully.
The strange ability to speak some coherent words every once in a while has diminished, although she did seem to know who I was for a moment and called me by name. On Wednesday, I told her it was my birthday and she said, “Happy Birthday.” Yesterday she said, “I love you, Pussycat.” I don’t think at the time she knew that was anything beyond just a phrase she used to say, but since she used to say it to me and I happened to be there to hear it again, I am grateful for the gift. As soon as she uttered it she was gone again.
Jennie and Steve are with me and I feel your prayers and support.
Thank you,
Ami
More Ups and a Down
Beebe continued to do well on Friday and Saturday. Hospice staff who come out to the assisted living facility to check up on her have been amazed at her recovery, one nurse saying in more than a decade of nursing he’d never seen anything like it. She ate well on Friday and Saturday, gaining back more strength. She took several laps around the facility pushing her own wheelchair (with us hanging on to her for dear life). Truly amazing.
She appears to be more talkative, uttering a few more real words amid the gibberish. Some even match up with questions we ask. Jennie sneezed and Beebe said, “God bless you!” When asked if she wanted something to eat she said, “Why the hell not?!” Asking “Hello Beebe, how are you?” gets her to open her eyes, shoot up her eyebrows and say, “I’m fine, how are you?” This many words in a row that atually make sense is not something we have heard since spring. She has even been able to focus her eyes on my face once or twice when I speak to her.
It is hard to say why this is happening. She hasn’t received her pills for almost a week, perhap a side effect from the drugs that stabilize her mood is sluggishness.
She is also extremely restless, she sees things that aren’t there, and random thoughts trigger fear and aggitation. Because of her Alzheimer’s, she has no appreciation of her surroundings. Her newfound strength is now a major concern as she is able to move her body into dangerous situations without knowing it.
Just after midnight yesterday (Sunday) Beebe got out of bed. The person caring for her didn’t change the batteries in the radio receiver they carry for Beebe’s bed alarm. After realizing it wasn’t working, the care associate just listened for the bedside alarm, which was turned down so as not to frighten Beebe. Beebe fell and cut her head.
No broken bones that we can tell, but Beebe’s restlessness and aggitation have increased and she only ate very small amounts of food on Sunday. I don’t know if this is due to the fall, sleep deprivation (she didn’t actually sleep until 6am) or even less remnants of the drugs that she used to take in her system.
I’ve not had a chance to get to emails, but I have read your comments to the blog. Thank you so much for your thoughts and prayers. Your comments have given me strength and comfort.
Every Day Is A Gift
It’s worth repeating. Every day is a gift. But there are some days more precious than others.
As most of you know I was in Houston last week with the Alzheimer’s Art Quilt Initiative selling quilts to fund Alzheimer’s research. The response was phenomenal; we did better than last year! We don’t as yet know how much better; we’re still counting. More on that at a future date.
My daughter Jennie and I were called home Sunday morning to be with my mother. Her blood pressure was erratic, and she was unresponsive. Steve, Jen, and I have been at her side since then, trying to make her comfortable and preparing for the inevitable. On Monday all medications except those for pain were stopped. On Tuesday hospice told us her body no longer needed food or drink; she was still unresponsive most of the time. “Pleasure food” (that which she would enjoy eating) would be offered, but not forced, when she was alert enough to sit up and take them without choking. She ate very small amounts of apple sauce and drank fortified “milk shakes.”
Yesterday (Thursday) she was alert most of the day. We tempted her with mashed potatoes, apple sauce, orange juice, chocolate, and even a bite or two of brisket, all of which she ate. Towards the end of the day we sat her up in bed and let her feet dangle off the edge. When she waved them around we thought she might be able to sit in her wheelchair. Just before dinner we were able to wheel Beebe around the facility on a “victory lap.” What an amazing day and what a wonderful gift!
Early this morning (Friday) I got a call from Tiffany, one of Beebe’s caregivers. She told me not to look for Beebe in her room. She said Beebe was dressed, in her wheelchair, and waiting to go into the dining room for breakfast! She has been alert and “talkative” all day, and has eaten just about everything put in front of her!
Please forgive the blow-by-blow account, but they are only the highlights. For nearly five days straight my heart rose and fell with her every breath. I don’t know that we are out of the woods yet, or how long she will be with us, but we are taking things one day at a time, so very grateful for each of them.
If you have emailed or called you haven’t heard back from me, and you probably won’t for a few more days at least. I will respond eventually, I promise. Since my newsletter readers, students, and AAQI supporters know about my mother through the Alzheimer’s Art Quilt Initiative, I thought the best way to let you know why I’ve not been available for almost two weeks was to direct you to this blog.
Thank you for your thoughts and prayers, and for your patience. Volunteers will help me by posting your blog comments. They are also updating the November quilt auction running now through the 15th. I will be back online again as soon as I can. For now, I’ll update here when I can.
Ami Simms
