Saturday, July 14, 2012
I am also still carrying her medical information. I have her social security card, her medicare supplement insurance card and the document granting me health power of attorney. I'm just not ready to take them out yet. I think they have been with me for almost 6 years.
I'll get there.
Thursday, May 24, 2012
The “ravines” is a beautiful stretch of Sheridan road that winds north from Wilmette. The road is carved into the landscape and is loaded with blind corners. It ascends gently so that it is possible to drive downhill entirely in neutral. Drive it carefully and stay in your lane. My mother did it in roller skates; metal roller skates. I cannot imagine how fast she was going.
She told me how she loved Halloween as a child. However, she never had time for a costume because she was too busy with the eggs she had amassed.
She chased the ice truck down the street, jumped on it, and sucked on ice chips as she rode along.
My mother always had time for me. She listened to me and was ready to listen at any hour of the day and night. She always provided perspective and made me feel better. I felt wanted and loved. Every word I know in French was on a list she quizzed me. She listened to hours and hours of practicing with nothing but kind words to say.
I often hear my mother’s words come out of my mouth.
• I remember as I’d leave with a date to do something competitive, she’d whisper “let him win.”
• On the bigger events, she gave me “mad money.” If I got mad, I could go home.
• She coached me to “be an actress…” to go bravely into situations where I was not feeling too brave.
• She told me “Girlfriends are important, nurture those relationships.”
• The best lesson is one I have repeated to my daughters. Pain and loss teach you empathy. Empathy empowers you to be a better friend.
We are losing witnesses to a history we can never forget. She would talk about the depression, the holocaust and Pearl Harbor with such passion. My mother left Northwestern early. She said she could not sit in her sorority house and classes when we were fighting such an evil force. She had to help.
We cannot forget.
I can’t ignore the elephant in the room; Alzheimer’s and dementia are horrid diseases. They steal your loved ones in little teaspoons. As she slid away, I could always see her locked inside trying to come out. This will not be the woman I remember. I will remember the woman who cared for me, who helped me build my courage and showed me that you can’t be brave unless you are truly frightened.
Lord, thank you for all the beautiful things you give us. Thank you for your love to us and the time we are given to love each other. Thank you for the gift of salvation through your son. Walk with us now and we start the rest of our lives without her.
At the end, we held her, talked to her, prayed with her and sang to her.
We really don't sing well.
After she was gone, suddenly the only Grace I could remember was my mother. She was strong and vibrant; her thoughts were clear and clever. She was my friend, my confident, my support. The weak woman with the disintegrating mind was hard to remember.
I thought I was ready and the wave of grief surprised and engulfed me. My daughters stepped in to support me. They stayed with me and they watched over me. Most of all, they grieved with me. They understood the pain because it was in their hearts as well. The Lord waited and took my mom when He knew I'd be supported. He is a merciful and loving God.
The service wasn't until May 12. My daughters spent the time scanning photos and building a memory book for the service. It was beautiful.
Her dog is miserable. For the first few days he went into her room repeatedly, searching and crying.
Grace Cobean Harrison, 88, longtime Glenview resident, formerly of Evanston, passed away April 28, 2012, beloved wife of the late Joseph; loving mother of Laine (Martin) Cobb, Jeph (Jo) Harrison and Edie Harrison; proud grandmother of Dan (Christina) Martin, Kit (Janet) Harrison, Marc (Christi) Harrison, Ellie (Randy) Harrison Bly, Tessa Harrison, Mandy (Greg) Friend, Carrie Muehlbauer and Tom Harrison; great grandmother of Olivia, Isa, Alistair, Agatha, Jimmy, Rosie and Isla. Grace is survived by her dog, Blackie. She attended Evanston Township High School and Northwestern University. She was a member of PEO, AOII and the bridge club that didn't play bridge. Memorial Service Saturday, May 12 at 10 a.m. at Glenview Community Church, 1000 Elm St. (at Glenview Rd.), Glenview. In lieu of flowers, memorials may be made to ASPCA at, www.donate.aspca.org or Alzheimer's Association at www.alz.org.
Tuesday, April 24, 2012
Tuesday, March 13, 2012
The fever was gone the next morning. How does that happen? She has no signs of being ill, but I warned the caregivers of her famous rash she would get on her arms with any illness. The next day, there was no rash on the arms. I know Grace would have been disappointed. It was her badge; her proof she had been ill.
Grace has a different rash a bit south of the arms. The caregivers give me updates as they have been working with Hospice to get it under control. I dutifully listen and try to synthesize all the information. They have been letting her ‘air’ dry by piling up pads on the bed and building a blanket tent. It’s quite clever. I have two very good caregivers and I am thankful every day for them. Yesterday they showed me where the rash was so I could see it was gone. Yes, the skin is healthy. But she is so thin. She looked like the pictures I had seen of the Nazi death camps. Her pelvis was draped with a layer of pale skin. Her legs are so tiny, you can trace the bone to the knee with no interruption. I knew she was thin, but it didn’t really hit me until I saw that.
I walked out of the room. I’m sure the caregivers thought I wasn’t interested. But I was and I am.
Friday, October 7, 2011
The look of venom ... it hurt at first, but I understand it now. She is locked inside a world that lies to her, that tricks her, that promises visitors that never come. She wakes up to a place she can't remember. Yes, the look is hate. But it's not at me. She hates that she can't release her fear and despair. She can't process what she sees. She looks at me briefly, then closes her eyes as they roll away from me.
If I stop and give her a kiss on her forehead, the hate melts and she looks at me. She makes eye contact and she smiles. She says "thank you, sweetie" or "I love you, sweetie."
Life with Grace can be a roller coaster, but I don't regret having her at my house. I never have. She makes me a better person. She makes me strong. She is teaching me to rise above the details and see the big picture. She strengthens my faith.
I brought her to my house to help her and fulfill a promise to my father. I never knew how much she'd help me.
Sunday, June 19, 2011
Wednesday, March 16, 2011
Grace also told me at what facility she wanted to be. We went there one day while she still lived independently. We walked in the door to a sea of empty faces in wheelchairs. The tour of the facility was impressive. They did as much as possible to make the place bright and cheery. I watched her as the color left her face. She panicked. "Get me out of here." I knew she would never be back. She was at the very beginning of her disease. Maybe on some level she knew she would be one of the vacant faces. I never asked.
Neither of my parents ever imagined in their wildest dreams that Grace would end up living with me. None of their "preparations" took this into account. The irony is that I always knew.
Tuesday, March 8, 2011
"Your children are not your children.
They are the sons and daughters of Life's longing for itself.
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams."
As a teenager, I found the passage isolating. It separated me from my parents. At the same time it both comforted and scared me. It explained places where we didn't connect and the understanding gave me peace and patience.
As a young mother, my young children were so integrated into my life and identity, I couldn't imagine any separation. Now as they are growing into beautiful young woman. This again gives me comfort and understanding. I know that the parts of their lives to which I can belong are gifts. I don't belong there. I watch as they connect with each other and can enjoy being a visitor into their world. I am not sad. I am proud; very proud. I understand that we are at this point because I did my job.
With Grace, I cannot reach out to her completely. She is in a place I cannot go. I can try to sit with her and be a comfort her, but I'm only able to knock on the window. If I'm lucky, she'll turn and look, but I can't come in. I am on the outside and will never be invited in.
Tuesday, September 14, 2010
I mentioned at work that I could not work late. My caregivers left at a certain time and I could not leave Grace alone.
I didn't think this was a big deal. After all, I am in the office just after 7:30. Only two others beat me in. And I connect from home at all hours. I am "on" 24/7.
But, the response I got was ridicule. He said...."caregiver? I'll be your caregiver for sql...."
What? Really? Did you say that? Did that come out of your mouth? SERIOUSLY?
I could only respond with "wow...." and walk away.
Friday, August 20, 2010
Last times happen all the time. I don’t always know that I’m living a ‘last time.’ Of course, I remember the last time I was in each of my schools. Graduation punctuates the experience and draws the line that must be crossed; the last time.
Sometimes the most important ‘last times’ happen without ceremony. I don’t remember the last time I nursed a baby. I don’t know the last time I picked up one of my children and held her in my arms. It sneaked past me and was gone. The treasured feeling of holding a child in my arms and providing comfort. It went unnoticed, unannounced. The last night both my daughters slept in my house. I didn’t know that summer was the last summer I’d have both my girls with me.
I didn’t know.
I would have absorbed the moment. I would have stayed up 5 minutes more to soak up the sounds of their laughter.
I didn’t know.
There was a last hug from my father, a last conversation, a last smile. When was the last time we sat and laughed? It slipped past me and I couldn’t appreciate it. I would have hung on longer. I would have tried to memorize the feeling. I guess I always thought there would be more.
I didn’t know.
I have learned that ‘last times ‘ sneak into your life. It can take years to notice, or just seconds. My last conversation with my mom; the last time I could recount the events of my day, is a mystery to me. The last time, Grace smiled at me and said something relevant, selfless or supportive. I know it’s gone, but when did it leave? When was exact last moment? Where were we? Why didn’t I savor it?’
I just did not know.
Wednesday, August 4, 2010
Around here, that happens a lot. Grace doesn’t process what she hears well and is equally poor at communicating. The caregiver does not speak English as her first language and sometimes the accent trips me up. When she says something to either me or Grace, if asked to repeat, she will not.
Caregiver: “Grace, do you want to go to bed?”
If I ask her to repeat anything I get the same treatment.
Caregiver: "I didn't see the mailman yet today."
I can easily picture this.
Caregiver: "There's a fire in the kitchen!"
Evidently this is a one-time only deal. If you don’t hear it the first time, the repeat is a super abbreviated version of what passed you by in the first place.
I particularly love it when I ask Grace what she said, and the caregiver feels compelled to answer. When she does “interpret” what Grace said, Grace chooses to repeat herself so instead of getting clarification, I get chaos.
“I didn’t hear either of you.”
Another endearing quality of the caregiver is her drive to become a mime. My dog had a spot on his back that bothered him. He was biting at it. Instead of telling me, she felt compelled to act it out. Not once, but several times.
She must be killer at charades.
Monday, June 7, 2010
Wednesday, June 2, 2010
“Oh, I’m so glad to see you!!! How did you find me?? Could you hear me??”
I have to admit, she’s darn cute like that.
I told her that I heard her and I was here to get her cleaned up and dressed.
Immediately I recognized my error. Too many thoughts in one sentence and not enough volume so I just told her ‘good morning, sunshine.’
She has a new behavior. When she’s being cleaned up or transferred physically (for example, chair to couch), she screams. Well, it’s not exactly a blood curdling, hair raising, chainsaw massacre scream, it’s more” bad-actress-in-a-bad-dramatic-play” scream. There are little bursts of the affect. The caregivers are on to her too. They just go on as if it wasn’t happening. I’ve rolled an eye or two at her. And when she is done screaming, the event never happened. It is gone and we are now in the next moment of ‘now.’
I was ready for the litany of drama during the cleaning, I warmed up my hands (one of her big complaints). Much to my surprise, no scream. She just kept saying how lucky she was to have me there. Grace had the “cute” on high volume. It was hard to not get sucked in.
We discussed color. She has a rainbow of pull on, elastic waist slacks, so I was able to comply with any requests. That day was good for purple. I brought the pants and just like a child getting to wear her favorite bunny shirt, she said, “Oh, I LIKE those!”
I dressed her and used a lot of the near peek –a-boo tricks I had leftover from dressing toddlers. She responded to each trick, each coo from me. And smiling? As wide as she could.
I got her lined up with the walker and we shuffled out to the couch. Once there, I built her a chocolate breakfast; chocolate Cheerios in chocolate milk (blended, of course) . I fed her and she eagerly gulped it down. I should just break down and get the chocolate kids’ cereals that I never bought for my own children.
The caregiver arrived and Grace was all smiles.
It was a good morning.
Monday, March 8, 2010
I will try to get a better video later. But this repetitive behavior is fascinating. She has asked "Can I Go?" about 3 bazillion times today. She has no idea where she wants to go and has zero plans for getting there.
At the end of the video, I laughed because my parrot had decided to climb down from her cage and walk over to me.
Me: "Yes you can go."
Grace lays back down. A few minutes pass.
G: "Can I go? Can I go?"
No one answers immediately
G: (in a weak voice, pleading) "Please? Please? Can I go? Please please?"
The Caregiver: “I’ll be there, Grace, just wait a minute while I clean up from lunch.”
G: (in a weak voice, pleading) "Please? Please? Can I go? Please please please please?"
Me: ”Yes you can go.”
G: “Okay, thank you.”
I go back to my computer.
G: "Can I go? Can I go?"
Imagining her in a nursing home, asking this over and over and no one answering saddens me. I imagine her saying .. "Please? Please?" And everyone too busy or too used to this question being asked repeatedly.
Grace: "Edie? Edie? Can you come here?"
Caregiver: "Grace, what do you need?"
Grace: "Edie? I need you."
I walk over to her
Me: "What do you need?"
Grace: "I need.... I need...."
Grace looks around, concentrating on her scattered thoughts.
Grace: "I need you to tell me I'm alright."
Minutes later she is on one of her walks. She shuffles through the kitchen in her walker, the caregiver right behind her.
Grace: "Is that a refrigerator?"
Grace: "They have a refrigerator here? That's nice."
Tuesday, February 16, 2010
Time has less meaning for her. Just a year ago, she knew what time I should be home and if I was late, there was a lecture. Now I can leave for days and there is little notice.
She is not so picky about food. I remember the demand of visible butter on her potatoes. Now she eats not knowing what she is eating and apparently not caring. However if I eat anything in front of her, she demands to know what it is and wants some for herself. Fortunately she can be distracted as her lack of teeth make our diets a bit different.
She still can fool visitors. Only she receives her guest as she reclines on the couch instead of being seated. Grace knows somewhere on her brain stem to smile and nod as people speak to her. Her contributions are negligible, but she appears attentive. I wonder when that will fade.
Recently we had a change in caregivers. A gentleman from the agency brought the prospect by to the “interview.” He sat near Grace trying to make conversation. He wasn’t too successful, but his efforts were cheery and kind. Grace would have nothing of it. She called me over time and time again to tell me “they are FRAUDS!!!” I never determined what the nature of the fraudulence was but got a little hint later when she told me the man was selling these women for sex. Quite a complex, though decidedly incorrect thought.
Tonight I came home to see her toddling in her walker, aided by our trusty caregiver, to her room. She stopped at the door to the closet under the stairs and opened it. She was sure that was her room and there was a fair amount of negotiation that the caregiver had to engage in to convince her to pass the closet up.
Alzheimer's steals our loved ones little teaspoonfuls at a time. Usually it doesn’t get me. But seeing her confused by the closet did. Why does that bother me and the others not?
Saturday, February 6, 2010
So time to change all the bulbs. The ceiling fixture has very strange bulbs that I always keep on hand (refer to the LACK OF WARNING in the last paragraph). After wrestling with this fixture and thinking unkind thoughts about it, I discovered one of the slots is so corroded that it will not receive another bulb and I managed to drop a bulb while trying to address this.
Then I tackled the bulb over the toilet. My focus was on the ceiling. After I was done, I looked down in horror to see human feces on the floor NEXT to the toilet.
O M G!!!!!
There was no mistaking it. I wondered if I could blame it on her dog but no. It was distinctly not canine.
I guess I should have let the caregiver clean it up but I could not stand it. Armed with bleach I took care of it. I will not share the thoughts running through my head as I scrubbed.
The caregiver du jour is not the sharpest crayon in the box. I mentioned this to her and surely she is wondering why I even told her.
Now, in my litany of things to check, this will be added.
Monday, February 1, 2010
In contrast to the strange stuff she says all day, a moment of clarity as she says a breathy greeting,
Grace holds out her hand and whispers to me giggling, “He’s cuuuuuuute.”
Fortunately John is good natured and returns the smile but is painfully aware that he is two inches away from the death grip of stalking-style love.
Her eyes say COME HITHER, but John is tactfully looking for his escape. He indulges her like a celebrity to his audience, but gracefully slips away to prepare for his next audience.
Tuesday, December 22, 2009
Another person she calls me is “Ginger.” Ginger was her best friend in high school. In this case she uses the name but treats me as either her mother or as me. She definitely is not treating me as a peer.
She has a new question she asks repeatedly. She asks “Can I go?” At first the caregivers were asking tons of questions.
“Where do you want to go?”
“Do you want to go now?”
And if they didn’t get the information they wanted, they started to play “20 questions.”
“Do you want to go in the kitchen?"
"Do you want to go outside?"
"Do you want to go to the family room?”
This only makes Grace mad. To her, it’s obvious where she wants to go. To her, we are only being difficult and intentionally delaying her from her destination. To her, the plot continues.
So, I just say, “yes.” Fortunately the caregivers have caught on. No questions, no trying to understand too much, just say yes. She is not a wanderer. She is not one of those Alzheimer/dementia patients that you will find wandering down a road. She can’t walk any distance and she can’t operate the door let alone the steps in and out of the house.
Just say “yes.”
She never actually has acted on this. She gets satisfaction knowing that she COULD go….
Wherever that is.
Saturday, November 14, 2009
Last Sunday, I woke up early and was getting ready for my last outdoor soccer game of the fall season. I was happily gathering my uniform, the trainer’s tape for various aging joints and sitting down to assemble it all. It was sunny and promised to be unusually warm for a November morning; a gift.
I heard something in the baby monitor. “Help Help Help” It wasn’t panicked, but it was unusual. So I went down to check. Grace was trying to get out of bed. The gate was up and her plan was to scooch to the foot of the bed so she could squeeze out the opening to a chair that we keep there for the dog to jump on and off. I tried to convince her to hang out in bed for just another 30 minutes until the caregiver arrived, but she’d have none of that. So I decided I had to get her up.
I found the diapers, the wipes, the rubber gloves and started unwrapping the three layers of diapers the caregivers use. It was challenging getting her to lay on her back still. She kept wanting to get out of bed oblivious to the fact that she was naked from the waist down and getting wiped up. Every few seconds she’d ask, “can I get up?” I kept talking to her as soothing as possible and telling her that she could as soon as I got her dressed. It amazed me how completely accepting she was of the diapers and how normal it has become to her. She then looked at me and became very sweet and childlike. She asked how she got so lucky to have me in her life and told me how wonderful I was to take care of her.
While I was dressing her, I heard the caregiver arrive. I put Grace in the wheelchair and the caregiver walked in very surprised. She said, “Grace always wakes up with poop.” My response, “we were not disappointed.”
After soccer, I came home to Grace, “What are you doing here?”
Monday, October 26, 2009
I got home, made myself a salad. I gave Sam some of his canned food because he was staring at me and I'm weak. I sat down, stabbed some of my favorite herb salad. I had the fork at my mouth, about to put it in when the caregiver shuffled in and yelled...
"EDIE!!!! I ALREADY OPENED A CAN LIKE THAT A CAN LIKE THAT IS ALREADY OPENED I OPENED IT HE'S NOT EATING BECAUSE A CAN IS OPENED I OPENED THE CAN DIDN'T YOU SEE THE CAN I OPENED?!?!? heh heh heh HE WON'T EAT BECAUSE HE ATE. HE DOESN'T EAT IF HE ATE. ALREADY OPENED IT RIGHT THERE RIGHT THERE"I briefly thought of sticking the fork in my ear to make it stop, but I didn't want to waste the salad. Fortunately she shuffled off chuckling to herself.
Now I am upstairs. I have to take out the garbage, but I will wait for her to shuffle home.
Monday, September 28, 2009
We have been fighting the small Indian Moths. She hates them and comes up with the strangest reason why they are here. I came home one day to find that much of the contents of the kitchen island cabinet was on the counter. I had been in the house two seconds and she told me, “These items have all expired.” Cleaning out my cabinets is not a week night activity. I resent that she has a job for me when I get home. I resent that she thinks she knows better what my priorities are. I resent that she disrupts my kitchen and instead of making dinner, I have to weed through the turned out contents on the counter.
Another time she declared that maggots were coming up the furnace ducts. I ignored her for a while, but the lectures were long. She would raise her voice telling me to listen until I finally explained that it was impossible. They need a food source. There is no food there. So the next target was the bird cage. I don’t understand why after having the bird cage for over 9 years, it would suddenly draw these maggots. I ignored her until one weekend she was so persistent, so obnoxious, I took the cage out to be hosed down.
I resent that she won’t give me peace.
One night I came into Grace’s room to say goodnight. Grace asked a question. As I asked her to repeat, the caregiver barged into the conversation with her own dribble. I asked her, “who should I answer? You or Grace?” She quieted down. Not one minute later the caregiver went on about Grace’s memory loss. I told her not to talk about it in front of her. It makes her sad and agitated.
I come home and she has to assault me with something. I need a secret door to my room. She is there the minute I walk in. She says, "Grace pooped and BOY was it hard. It's all that ice cream. I don't give her ice cream because of that. Boy oh BOY Heh heh heh heh.... she pushed and pushed. I tell you. It's that ice cream......" I think you get it.
Tonight, after a rough day at work, I was tired. I tried to tiptoe past Grace’s room. Nope. The caregiver called to me, pointing out to Grace that I was there. I was trying to make / eat dinner and Grace is now agitated and calling me. I went in and the caregiver says, “she’s been calling for you.” Well, yeah, duh. I can hear that. I told her she was the problem.
I had a cleaning crew come. I have them here once a month. When they came, suddenly the caregiver had to get up and be in the kitchen sweeping. She is in their way. And she has an amazing ability to move, think, speak in slow motion. It is infuriating. But any action in the house is like a magnet. She is drawn like a moth to a light, she has to be in the way. It is amazing. The girls try to do laundry and she almost races them to the machine.
I am in my room. Hostage. Do I really want to fire another one? Geez.