Plan B

My mother always knew that she would eventually need to be in a place that would take care of her. She accumulated videos in great number. She told me it was so that her room would be where the nurses would gather. Never, did she imagine that her brain would fail her so completely.

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.

Knock knock

When I was a teenager, I had a book by Kahlil Gibran. One passage struck me at that age and has stayed with me. On some level, I knew that its meaning would evolve and change as I went through life. I would go back to it thinking that I understood a new facet, but now with Grace, it reveals itself to me even more.

"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.

http://www.katsandogz.com/onchildren.html

Wow

I actually ran into something that astounded me.

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.

Wow.

The Last Time

I remember the last time I stepped into my childhood home. The furniture was gone and I knew that an era was over. I walked through the house. I tried to soak in each room, absorbing the feeling each one. I remembered what it was like to hear my father laugh. It was over. I walked away, locked the door and knew it was the last time. I wrote that message on my heart and my head.

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.

The Perils of Communication

I have a pet peeve. If I ask for someone to repeat something, I can guarantee you it’s because I did not hear you. If I ask a question about what someone said, then you can be sure it’s because it wasn’t clear to me or I only heard part of it.

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?”
Grace: “What?”
Caregiver: “bed.”

If I ask her to repeat anything I get the same treatment.

Caregiver: "I didn't see the mailman yet today."
Me: "What?"
Caregiver: "mail"
Me: "huh?"

I can easily picture this.

Caregiver: "There's a fire in the kitchen!"
Me: "What?"
Caregiver: "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.

Just In Time

At one point this weekend during my flurry of activity, I came downstairs to Grace laying in her usual spot. She looked at me, smiled and said,

"Edie!!! Your're just in time.!"

"Oh?". I asked cautiously.

"I'm tinkling."

"AWESOME!!"

The Right Side of the Bed.

Saturday morning I was ready to go to Michigan, then I heard Grace stir about 40 minutes before the caregiver was due to arrive. Forty minutes is a long time in the world of “now.” I knew I had to get her cleaned up, dressed and start breakfast. I walked in to her room to find her wide awake with one hand holding on to the arm rail tightly. She looked at me and a childish toothless smile spread across her face with a smile that included every part of her.

“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.

“What?!?”

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!”

More “cute.”

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.

Darn cute.

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.

Grace on the Go

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.

Going, Going, Gone

G: "Can I go? Can I go?"

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.

A Typical Morning

Grace is laying on the couch, clutching her dog who happily stays with her. The caregiver is next to her in a chair. I go into the kitchen to stir my simmering oatmeal.

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?"

Caregiver: "Yes"

Grace: "They have a refrigerator here? That's nice."

The Descent

I’ve been watching her decline. It’s subtle and it’s obvious.

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?

Not So Bright

The caregivers don’t always like to share information. They are not a forward thinking lot. When they tell me that there is a light out in her bathroom, that means that absolutely every light bulb (and there SIX) is out.

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.

Ew?

Crushing.....

Grace is in love. Yes, love in the golden years. It is unmistakable. He walks in the room and she melts. Her eyes go all puppy eyes. A smile grows wide across her toothless mouth. She sits up straight, hand goes quickly through her hair.

In contrast to the strange stuff she says all day, a moment of clarity as she says a breathy greeting,

“Hi John.”

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.

Christmas

The Wanderer

Grace has been using a lot of different names and identities for me. She confuses me with her mother and constantly is asking permission. I really didn’t know her mother very well and I’m not sure whether I’m getting a window into her life, but if I were to get information about her based on Grace’s behavior, she was a dictator.

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.

Poo Poo Pee Doooo

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?”

The Tirade and the Tired

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.

Resentment

I own in a four bedroom, four bath home, yet I live in one room. Why? Because of the energy and patience it takes to be called over to Grace 50,000 times. More so because of the energy and patience it takes to deal with the caregiver. She complains.

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.

Can You Fix It?

Grace has been calling me over more often. Unlike the crabby Grace of a year ago, she is actually sweeter to me than before. She just wants me to look at her and smile, so I comply. It’s so easy. All I have to do is say something with a smile and she really doesn’t care what I’ve said. Most of the time she doesn’t understand. Sometimes she asks me to repeat.

Me: “I’m going out running now.”
Grace: “What?”
Me: “I’m going for a run.”
Grace: “You’re doing something with a form?”
Me: “Ruh - Ning”
Grace: “You’re what?”
Me: “I love you.”
Grace: “I love you too.”

I have found that if I give her a little hug, it really cheers her up. It’s not always a simple thing to do given the positions she adopts while on her favorite couch. I know what she weighs, but I am always amazed at how tiny and boney she is.

Last night she called me over and said, “My heart is backing away. Can you fix it?”
I told her I could try to make her laugh, if that would help. She just shook her head at that. I really can’t be certain what that means, but I can take a few guesses. All sorts of things run through my head.

One of the behaviors in Alzheimer’s patients is their loss of language skills. They start to use words inappropriately or substitute a word for another meaning. I’m sure at another more brain healthy time in her life she could have told me exactly what she needed. Most likely she expressed this as well as she could. Her eyes stared at me afterwards hoping I would have an answer. I didn’t .

I am also painfully aware that I am the fixer in her life. She has a request, I make it happen. I bring home her ice cream, she sees me as the leader of the caregivers, she knows I am taking care of her. However, she has hit on something I can't fix. It makes me feel like I'm failing her.

She is most likely aware of her own deterioration. I don’t think she is in pain, but I think she knows she is leaving us.

Very very slowly.

Brief Conversation

Yesterday, when Grace was going to bed, she paled and froze. She stared up and for a few minutes was completely unreachable. The caregiver was upset. I understand that. I tried to tell her that this kind of stuff is going to happen. If she is not in pain, there is nothing to worry about. I told her she might be having little strokes.

I have another theory I didn’t share. I think God was talking to her. She left this world for a few minutes. He was probably telling her to hang in there…that she’ll be home soon..that Joe is waiting for her.

In the Prone Position

I have a new agency and am glad for the change. They do things a bit differently; much for the better. One interesting practice is that they get Grace up the minute they arrive. The other agency let her sleep and woke her around 9:30 a.m. Not this gang, it’s up and at ‘em at 7:30 a.m. What Grace has forgotten is that she is not a morning person. Her body may be up, but I promise you nothing else is.

The caregivers don’t have the history, but it is interesting from my perspective. They clean her up put her in her wheel chair and pour her onto the couch. Grace waves to me as I run around getting all my morning tasks done before I’m off to work.

As I prepared the fruit and vegetable bowl for my parrot who is nagging me and saying “apple” over and over, I was watching the feeding ritual. Her cheerios in milk are now blended into a sort of cold, sweet stew. Looks awful to me, but Grace eagerly takes it and actually picked it up and started feeding herself.

The caregiver brought the towel to put in her collar thus minimizing the day’s accumulation of food in her clothes. Grace’s eagerness waned quickly and this became the same battle at every meal. She wants to lie down. She takes a bite, swishes it around her mouth for about 2 minutes and tries to lie down while doing this. The caregiver doesn’t want this to happen because she’ll choke. The woman chokes easily; add that tendency plus the position plus a mouthful of unswallowed food, and an episode of coughing and gagging is not far behind.

Caregiver: “You can’t lie down”
Grace: “Why”
Hedwig: "apple apple apple"
Caregiver: “You’ll choke on your food”
Grace: “You’re mean”
Hedwig: "apple apple"

Grandma's Train of Thought

Grandma: Mandy!
Mandy: Yes?
Grandma: Are there turkeys outside?
Mandy: No...
Grandma: Okay then just chickens.

Fun on a Couch

I walked into the living to the serene scene of Grace laying on the couch looking at the birds out the window. She smiled at me as I approached her. I touched her head gently, said hello and asked how she was doing. She brightened up, looked at me, smiled and said proudly, "I'm having a poop."

It's hard to know what to say. I don't think Emily Post covers this in her guide to manners. Here are some ideas.

• How nice?
• Do you want some privacy?
• Ever thought of using the toilet?
• Doesn't smell too bad.....yet.
• Thanks for keeping me informed.

Witnessing this, Mandy wondered out loud if it was possible to even do that comfortably while laying on your side. I'd have to agree.

The Outing

I heard a noise and looked out my window. Alicia is AMAZING. She actually got Grace to go outside.

Slip Sliding Away

This morning I came downstairs to my mother in the bathroom off the kitchen. This is mildly refreshing as she hasn’t been in that bathroom for several weeks. She wears her bathroom. The current caregivers are ambitious and actually try to put her on the toilet now and then. They also try to patiently teach her to tell them when she has to urinate, but without much luck. Memory is a key element in education.

Her slide is elusive. Certain topics elude her; others stay with her. As she was done with the toilet, I could hear the hand washing discussion. She didn’t feel it was necessary since she didn’t touch anything. Actually she didn’t remember touching anything. Same thing to her.

Leaving the bathroom, her mind finds a moment of clarity as she asks the caregiver if she should turn right or left. The clarity was brief. The next question to the caregiver was about me.

“How long have I known her?”

The caregive answered patiently. “All her life.”