Posts tagged ‘Alzheimer’s’
I’ll Be On The Quilt Show!
Yours truly will be a guest on The Quilt Show! Look for me on a monitor near you some time at the beginning of 2011.
If you can’t wait that long, and you’re a member of The Quilt Show, come to the taping! It will be on August 10th and “admission” is a completed, fully registered Priority: Alzheimer’s Quilt! Alex and Ricky are making my dream come true — to look out over the audience and see every single person holding a little 9″ x 12″ donation quilt for the Alzheimer’s Art Quilt Initiative. Either that, or possibly catching a glimpse of George Clooney in the back row. I could go either way.
Space is VERY limited. Put “Ami Simms” in the subject line when you request tickets for the August 10th taping.
If you can’t make the taping but you’d like to influence history, in your comment to this blog post tell me what you’d like me to do on the show. Let me rephrase that. I’m not showing my hand-dyed underpants, juggling is out, and there will be no cooking segments. What else are you interested in seeing? What questions about the AAQI can I answer for you? What skills are you all excited to learn that I might happen to know? What annoying habits should I try to stifle? All suggestions/comments welcome. Tell your friends. And send Rolaids. I’m already getting nervous.
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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.
Goshen, Indiana
I just returned from Goshen, Indiana where Madison and I were invited to give the keynote speech for Greencroft Goshen’s 20thAnnual Alzheimer’s Seminar. Afterwards Madison helped me tell how service dogs can help people with Alzheimer’s in the break-out session. This was in conjunction with the “Alzheimer’s: Forgetting Piece by Piece” exhibit which was displayed there.
You can see how beautiful the quilts looked in this Fox newscast segment about the exhibit, taped about three minutes after we hung the quilts. Had I known I was going to be on television I would have at least changed clothes. Heck, had I known I was going to be on television I would have been a nervous wreck and probably tossed my cookies!
The Maple Leaf Quilters also coordinated an evening just for quilters in the Goshen area and I got to give two presentations. Madison did a great job being a “good dog” while I spoke. He showed off some of his many skills afterwards.
When Madison wasn’t in his service dog backpack “working,” he was in casual attire. (He’s wearing a Hawaiian shirt in the photo above.) He also wore a tuxedo on the day the exhibit opened and a tie-dyed T-shirt on the last day. (I can’t remember what I wore.) His tail wagged so often it will probably be sore for a week! I had way too much fun having him along on the trip.
Jennie came in after work on Friday night to help. It’s not often my family gets to see me lecture, so that was fun too. Jennie is responsible for these great pictures.
I also got a chance to visit with my friend Ida, who taught me how to quilt more than 30 years ago. It was great fun to catch up with her, two of her daughters, and a granddaughter.
No, I’m still not unpacked, and the quilts head out to Lansing, Michigan for the Michigan Quilt Network show at the Lansing Center September 11-14. Dog has to stay home.
Every Year, Around This Time…
Every year at around this time, a certain flower blooms at the corner of our garage. As we drive in or out, the huge blossoms always take us by surprise. It’s a combination of their beauty, their size, their fragility, and the realization that the summer is almost over.
I don’t know what internal structure supports their mammoth size, but it must get worn out by the end of the day. By dusk the petals are withered and drooping. The next morning those blooms, or maybe different ones, are open again drinking in the sunshine and defying physics. Buds are in line behind them for a show that will last several weeks. And then they’ll be gone.
This plant always begins to bloom when Steve is ready to go back to school, about the time I’ve forgotten that he’s only home in the summer. While he goes in to get his room ready practically from the time he leaves it in June, I tend to forget that vacations, lunches out, running errands together, and watching TV past 9:30 p.m. aren’t the norm. Just about the time I get used to having him home, he’s back to his classroom full-time. You’d think after 31 years of marriage I would be more in tune to the pattern and I wouldn’t be so surprised, but I’m not. You’d think I’d hate this time less, but I don’t.
When the flowers come I find myself asking: Did I make the most of it? Did I cherish our time together? Did I wring out every drop? I always want more time.
This year, and for every year that follows, the beautiful plate-sized flowers with their translucent petals will have another meaning too. Mom fell five times since spring. No broken bones, but with each trauma the Alzheimer’s took a little bit more. She’s forgotten how to move her feet to walk and what balance feels like. Even if her brain could remember, her muscles have lost their strength. The words she speaks are adrift in a sea of strange syllables. Her understanding of the things around her grows dimmer. Some days she won’t sing. Hospice has begun. She seems as fragile as the paper-thin petals on the blooms by the garage.
The Phone Rang Last Night
Each night when I go to bed I set my cell phone on the nightstand and wonder if it will ring during the night. Except last night; I just went to bed. I got “the call” at 12:45am and made it to Mom’s room as the ambulance crew was trying to figure out how to move her from the floor by her bed onto the transport. She was sound asleep, resting after taking a tumble, presumably on the way to the bathroom. We’ll never know what happened as she is unable to tell us, having forgotten what happened almost as soon as it did. Aides found her yelling for help during a room check.
As soon as the paramedics attempted to move her onto a backboard to lift her onto the transport they got an earful of expletives. Mom has always been a colorful curser. There’s very little meat on her 98-pound frame. I’m sure the cold, hard plastic backboard was uncomfortable at best, and she let them know it. I rode with the ambulance to the hospital hyper-conscious of every pothole.
We dodged the bullet this time. X-rays showed no broken bones. Mom slept through most of the ordeal, and I was home in bed again just after dawn.
White at the ER she had her blood pressure taken once, got a shot, and tried to climb out of bed twice sticking both legs through the bed rails. Backing her up was no easy task as she was on a mission to complete the errand that landed her in this fun house in the first place. She used the bed pan twice, received a series of x-rays, and finally demonstrated that even at 4 am, awakened from a sound sleep, with morphine sloshing through her veins and people supporting her on both arms, that she could still ambulate proving that she could be discharged. Total time elapsed: 4 and 1/2 hours. I can’t wait to see the bill.
Not a single person we encountered bothered to identify themselves to us. I still don’t know if the person who discharged us was the doctor or part of the cleaning crew. To keep Mom calm, I spoke to her very slowly and in an extra soft voice and asked the ER staff to do the same. No matter how well I modeled the desired behavior, nor how often I reminded them that her hearing was probably better than theirs, they insisted on speaking at such a ridiculously high volume it was almost comical. They did not take direction well.
Mom, on the other hand really did a great job. In addition to soldiering through all the painful poking and prodding while being totally clueless as to where she was and why she was there, tried to do everything that was asked of her. In fact she even tried to do everything that wasn’t asked of her. She answered almost every page that came over the public address system, jolting herself awake to answer, “OK, just a minute, be right there.”
