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.”

Ramming Speed

Note to the caregiver agency.....

Just last month I replaced the dishwasher and they still don't know how to work it. Today I have a new washer machine to replace one that was not new, but too young to have mysteriously died.
The delivery people specifically instructed D to not run it until the manual was read; that this washer machine was tricky. D told E and E admits to hearing this. However, E completely ignored instructions and threw a load in. When I told her about this, she very sarcastically said "OH MY GOD" like I was making a big deal out of a little thing.

From this moment forward, I do not want any of your employees to use any appliances expect the blender, stove and refrigerator. I don't even want them using the disposal as I came home one day to find one of the caregivers jamming and banging a brush down it. They can through garbage out and wash dishes by hand. I have also had to pick out broken dishes from the old replaced dishwasher. That machine died because the soap dish had been chronically overloaded.

I will process Grace's laundry and leave it to them to sort. I don't want to have to keep replacing pricey appliance due to abuse.

PS... when I got home, E would not look at me nor speak to me. Guess she's mad. What she didn't know is that I prefer the silence.

Red Hair

There isn't much these days on which Grace and I connect. One thing does come to mind; my hair color. She looks at me with this wistful smile and says, "I like your hair color."

I shake my head to flip around my hair and say, "What do you mean? This is my natural color!"

She laughs.

Oddly this is the only thing I can do to make her laugh. She used to laugh a lot, but if my 'red' hair can bring a smile, then .. cool.

For all other events in her life, she is sarcastic, impatient and crabby. She tells the caregiver she wants something to eat and if they aren't back in 15 seconds, the tirade begins. She yells and tells them to hurry up. If she didn't have Alzheimer's, you'd have to take her nastiness seriously. Now, I just walk away, or start to sing.. if you're happy and you know it....

How Can I Help

My adventures are less about Grace and more about living with caregivers. The interesting thing is that I was able to share my experiences with a woman taking care of her sister and the common experiences were quite striking.

Her caregiver also talks nonstop. I think there must be some circular breathing techniques that the caregivers are taught so they can spew words perpetually. It is a fascinating skill. I think they research what topics would bore me to death and then dwell on those.

They also have a sixth sense about what I want to do. My friend had the same experience. I am convinced she sits motionless next to Grace all day until I arrive. If I open the refrigerator, suddenly it is imperative that she get into it. If I get near the sink, she MUST rinse out a dish. If I put something in the dishwasher, she needs to add a dish to the rack. If I try to cook, she needs to use the stove AND needs to quiz me about what I am preparing as well as how it is being prepared. If I go into the laundry room... well, you get the picture. I try not to scream, but sometimes it's more than I can handle.

She is also trying to feed me. After being here a full year, she still does not understand that I'm a vegetarian. She also has not caught on that I have never accepted food from her ever... not even once. I was thinking of getting a t shirt made that simply said, "no, thank you."

I had to chuckle as I heard my friend describe how her caregiver just would not stop being involved in everything. It seems like such a little annoyance, but there is no place to hide; this is my home. I stagger home from work, some days, exhausted. I have had meetings back to back; had to think on my feet every minute while processing multiple projects and conversations at the same time. I want to have peace when I come home. Not a chance.

No rest for the weary

So I made the mistake of telling one of the caregivers that I didn’t mind if she napped while caring for Grace. I mean, Grace is sleeping. She is right there next to her, nod off. Partly this was motivated by my pity for the hours she spends at a rather boring task and part of it was to spare myself the agony of listening to her talk. The woman can talk while both exhaling and inhaling. I try to make mad dashes past her to avoid the engagement into her inane prattle. I can be polite for a while but then I’m just trying to focus enough to respond semi-appropriately and make sure my eyes are not rolling.

The sleeping is actually rather fascinating. I’ve never seen a horse sleep, but she can fall asleep in any position; including standing up. I have seen her stand at the counter, taking something out of a plastic bag. She starts to paw at the bag in a strange repetitive motion and sure enough, her eyes are closed. Her hands are still moving (and accomplishing nothing) but her eyes are shut. I just step around her quietly. Another time she was putting something in the microwave and it happened again. She has her head right at the open door, leaning over to place the item, but taking a bit too long. Her eyes are closed again.

Another favorite is to see her sit in a chair with the dog in her lap. She's out. One evening, I heard a strange thump in the bathroom. She had fallen asleep while on the toilet and hit the chest of drawers. I have also caught her with her head in the refrigerator, searching for divine inspiration with her eyes closed.

When she is in the kitchen sleeping at the counter (yes on her feet), I just work around her as if she were awake and doing something that required her presence in the kitchen. Sometimes that is awkward, but waking up a person who is asleep while standing is also awkward.

Grace notices this too. She yells at her to wake up. Then she denies it.

"I'm not sleeping, Grace."
"I'm just looking at this."
"I'm just closing my eyes."
"I'm only looking down."

Fascinating.

House Sitter

I came home from work to be greeted by my mother, "Oh, what a surprise to see you!"

Me: "Oh? Why?"

Grace: "Why are you here?"

Me: "I live here?"

Grace: "No, you don't"

Me: "Oh, I see. What are you doing here?"

Grace: "I'm house sitting."

Me: "Oh, well, uh , right, uh.... can I help?"