Wednesday, December 30, 2009

Tuesday, December 22, 2009

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.

Saturday, November 14, 2009

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?”

Monday, October 26, 2009

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...
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


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.

Thursday, September 10, 2009

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.

Saturday, August 8, 2009

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.

Friday, July 10, 2009

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"

Wednesday, July 8, 2009

Grandma's Train of Thought

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

Friday, June 12, 2009

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.

Wednesday, June 10, 2009

The Outing

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

Thursday, May 21, 2009

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.”

Tuesday, May 5, 2009

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.

Saturday, May 2, 2009

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....

Sunday, April 26, 2009

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.

Sunday, March 8, 2009

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."


Tuesday, February 3, 2009

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?"

Saturday, January 31, 2009

Home Sweet Home

Recently she has been convinced there is a plot and I am the master of the deception. For some reason, she remembers a neighbor from the house where I grew up. She has decided that I have purchased their house and moved us all there. I’m not sure how, even if this were true, that this would be such a horrible plot, but she is very unhappy about it.
She has asked a friend, as he was leaving, if he was going her way. He took notice and asked why. She wanted him to take her home. When asked where that is, she turned to me and said that I knew. When I asked, she got very angry and insisted that I knew. I tried to tell her that she lived here now. This just seemed to make her sad.
The caregiver told me one morning she woke up convinced she was in the wrong house and that she really lived two doors to the east. This is interesting as it has reoccured and she has asked me also why we are in this house, when we live two doors (followed by a gesture to the east). When I told her of the names of the people that lived in that house, she then pointed west. Normally I try to go along with anything she thinks is true, but I would be unable to follow through with this and actually go to this house and move in (though it is a nicer house). So, I had to tell her the names of the people living there too.
Occasionally she must think she is back in her childhood home in Evanston. She will tell us that her brother is just upstairs. We don't argue with that. Though he died several years ago, we just tell her he will be down when he is done with what he is doing.
One morning she did not want to leave her room. She believed it was her apartment and the rest of the house was the lobby. We convinced her to come have breakfast in the lobby.
She has asked me several times why I am here and if I live here. When I tell her that I do, she finds this hard to believe. I tell her it is my house and she says that I am "spoofing"her. She asked me when I moved her and she can't believe it was almost ten years ago.
Home is an important place. Is a place you can relax and wear those sweat pants with the holes in them, walk around with no makeup and in the matching grungy tee shirt and bunny slippers.

What if you had no home?

And worse than being homeless, you never recognized where you were?

How terrifying would that be?