Monday, November 23, 2009

I don't want to give up yet

"I don't want to give up yet."
How do you respond to that?
This was Mom's answer to her doctor's suggestion that she should think about moving: moving in with one of her children, moving into an apartment, moving to assisted living. Even just for the winter.
This was Mom's first answer that wasn't "No! no! no!"
It was the first time I got a peek inside her thoughts.
I think, she thinks, that receiving any help is failure.
She is so stubborn about letting anyone help her. No visiting nurses, no meals-on-wheels, no hiring someone to mow her lawn or trim her shrubs, no help putting away groceries, no help making up the bed.
Does she think that if she leaves her house, she stops living?
Like rattling around alone in her big dark cold house day after day by herself is so great now? She was always the social person. Now she is isolated in her house until someone comes and drives her away. Even when she could drive, for the past few years she has become more self-isolating, not going to meeting and gathering, staying in instead of going out.

Wednesday, November 11, 2009

out to lunch

Sometimes when we go out for lunch, we'll find a small restaurant or a diner. Sometimes we'll find a sandwich shop, a deli, coffee shop, or pizza spot. Sometimes it's the cafe in the book store or the grill at the ice cream stand (with the really good fried fish and onion rings).

Over the past month I've noticed that my mother can no longer order lunch by standing at the counter and selecting items from the menu board. She is really much more comfortable (relaxed, non-agitated) when she sits down and reads a menu.

"I'll have what you're having" I now know is a coping trick. But, she really doesn't like to eat what I like. So, I try to point out things I think she might like. Then she gets mad at me for reading the menu off the board, "I can read you know!"

"I can't eat all that, it's way too much!" Of course it is. Anything you order is way too much. You always take home half of any meal you order.
Which is fine, she might eat twice today.

Thursday, November 5, 2009

again and again

The repetition, over and over, again and again. The same stories.
Each time we pass this neighbor's house, I hear that she has a new husband.
Each time we drive past the diner she comments on their tasteless meatloaf.
Each time we drive past a certain tree stump, she says it looks like a mailbox.
Each time we pass the old boarded up restaurant she tells me about a neighbor of ours who liked to eat there, forty-five years ago.
Each time we see the mountain, she tells me about climbing it when she was in high school.

Yesterday, there was new news. Her church has a new minister. Then she told me this new news again and again, every hour, all day.

A few months ago, the electrical crew was in her yard, clearing branches away from the power lines and poles. I was there that day, and I heard the trucks and saw the workers. I called to Mom, to come see. All we could see was a bright orange hardhat above the field of grass. For the next five visits and six phone calls, she told me a story about seeing a pumpkin in her yard, but it was really an orange hardhat. I listened attentively each time I heard the story. But, after the ump-teenth retelling, I got upset. I really got upset.

Mom, I remember you telling me this story already, and it is kind of funny, but what really hurts me the most, is that I was with you that day, I pointed out the hardhat to you, we had a good laugh about it together that day. But, when you tell me that story, you don't remember me with you, you don't remember laughing together about it, you don't tell people "my daughter and I saw the funniest thing", you tell the story like I wasn't even there.

Thursday, October 22, 2009

steering through the aisles

Growing up, I was always the one to accompany my Mother on our family's biweekly grocery trip. I was a good shopper and a reliable helper. Well, except when I crashed into her ankles with the fully loaded grocery cart. Hey - I was a pipsqueak and those carts don't come with brakes!

Now the rolls have reversed, and I take Mom to the grocery store, every four or five days. She has never been one to shop from a list, I can't shop without one. Making a grocery list is not going to be a new life skill that she can implement. Our grocery shopping trips have to begin at her house. I wander around her house, checking for this or that that might be low or missing. Does she have soap, tp, and toothpaste? Laundry detergent, cat food, and town approved trashbags? Milk, juice, bread, butter, and eggs? I make a list.
"What are you looking for?"she demands again as I peek in the fridge.
The staples? She doesn't need staples, as she no longer cooks, but she still needs them to be in her refrigerator. Month after month, I throw out the unused eggs, and we buy another 1/2 dozen "so I can make a quiche". Her jar of peanutbutter expired in 2005, but it still sits in her pantry, doing it's duty as another jar of "See! I have food in my pantry".
I peek in her fridge, count the jugs of oj, the half eaten tubs of cottage cheese, read the dates on the milk and eggs, and wonder if she ate any of those oranges. (How can I throw them away next week without being yelled at -- because they really aren't round anymore.)
I count the frozen dinners in her freezer, did she eat at all this week?

Now the rolls have reversed. She is the one to push the grocery cart. She needs to lean on it for the long walk about the store. Long long walks. Today it took 90 minutes to shop for fifteen items. She has to read the front page of both newspapers, before she will put them in the cart.
Now comes the hard part. I call it steering my Mother. I have a grocery list in hand and she has the list in her head. I know she has a quart of good milk in her fridge and a pint of old milk too. She wants to buy another quart. Steer her past the milk, on to the butter.
"Well I need butter."
You have three sticks in the fridge.
"The butter dish is empty"
Yes, you have more in the fridge at home.
"Are you sure"
Yes, I saw them today.

On to the deli, the choices are overwhelming. I want to hold up a big sign behind her head: "Please be patient with my Mom. She orders the same thing every time. But she doesn't remember. 1/4 lb turkey and 1/4 lb sliced horseradish cheese."
Last week when we went grocery shopping, I got the lecture about it being "my money and I can buy whatever I want." every time I reminded her that she already had two bags of cat-food, three jugs of orange juice, and seven bottles of molasses at home.
This is harder than grocery shopping with little children.
I use to think that I could do my weekly grocery shopping while my mother did hers.
Nope, nada, ain't going to happen.
I do manage to throw one or two items in the cart for my family, but only because I've seen them when we've stopped at the end of the aisle waiting to turn, and waiting, and waiting. She lets everyone in the store go past before she'll venture out to turn. I think she's forgotten how to say "Excuse me, may I get by?"
I've also noticed that she doesn't respond at all to the cashier and the bagger.
This grocery store is known for their polite and helpful staff, they have always been known for it. Now that I think of it, this is the same chain that Mom and I use to shop at together when I was pushing the cart. Wow.
Back to the cashier and the bagger. The staff is always polite and nice. "Hi how are you? That will be $32.50 please. Thanks for coming. Have a nice day." They get no response from my Mom, no eye contact, no smile, no "you're welcome", no "you too", nothing.

Back at home, she wants to carry all the bags at once, up the stairs, into the house. She swats my hands away from the bags.
Yes Mom, I know you can carry your own groceries, but I'm here, I can carry some too.
I want to scream at her ** I would be offering to carry your *^$% groceries if you had dementia or not, you crazy old woman, I'm your daughter, I've been carrying your groceries my whole life!! **
But I don't. I follow her slowly up the stairs and into the house. I know this woman is scared of losing her control and self reliance. I'm scared I'm loosing her.

Monday, October 19, 2009

yes, a good day

My husband knows the stress that I am dealing with, w.r.t. my mother's dementia. He is my rock, he is the one I cry on when it all becomes too much.
"How was your day with your mother?" he asked.
Same old, same old... and I told him about some of her new quirky behaviors.
"So it was a good day" he stated.
I really was brought up short.
Nothing has gone horribly wrong, Mom and I had spent a pleasant day together.
She was alive, she was happy.
Yes, it was a good day, but I still want to cry.

Tuesday, September 29, 2009

can't

Today is my day to go to Mom's, to do all the errands. Go to the grocery store, bank, post office, transfer station.
I can't do it. I just got out of the car and came back into the house.
It hurts to face her, to have to deal with the dementia, it hurts deep inside. So here I am, procrastinating, ugh, have another cup of coffee, and will my pulse to slow down and stop crying.

Friday, September 25, 2009

ice storm

Last winter, December 2008, we were hit with a huge ice storm. Power was out for weeks. Mom did not cope with this winter storm in New England, she did not successfully deal with the power outage, the long dark days, and keeping her wood stove going.
She flunked bigtime!

This was how we finally realized that her dementia had fooled all of us.

"Oh, I have plenty of food, I have water for drinking, I have water to flush the toilets, I have plenty of wood for the wood stove, I have candles, I have a flashlight... "
Every time I called to check on her, she would say the same thing, she was telling me all the things I needed to hear to believe that she was taking care of herself and coping with winter storm and power outage.
And of course I believed her, why wouldn't I? She's used a wood stove as a complimentary heat system for over 20 years. As my Scout leader, she took our troop on winter backpacking adventures.  She is a smart resourceful woman.

Friends and neighbors would call to check on her during the storm. She would repeat the same mantra: I have food, I have water, I have wood. Maybe the questions we should have been asking were, “what did you eat for lunch”, “is there a fire in the wood stove”?

My landline phone wires had been ripped off my house, my cell phone was dead. I asked Mom to call my cell phone and leave messages, I would call her when I could recharge. The messages I got from her were very odd. “I can’t hear you, talk louder.” It was as if she couldn’t use an answering machine. “Your never answer your home phone, talk to me, what, speak louder.”

The truth was that she was not coping. Plenty of food only counts if you cook and eat. She did not have any water for drinking, washing, or flushing. A flashlight is only good if it has working batteries, and you can find it. Candles are only useful if you light them. A wood stove only keeps you warm if you bring wood into the house and feed the stove.

She did not think to melt ice for water. She could not keep a fire going in the wood stove. She did not understand/remember that she could still use her gas range to cook food, melt ice, or make coffee. She was not eating or drinking.

Her usual daily routine was shattered, and she could not cope.

The days were dark from 3:30 in the afternoon to 8:30 in the morning. When I finally could get to her, three days into the storm, she was lost in the cold and dark, sleeping in a straight back chair in front of a cold wood stove.

Her neighbor had checked in on her the day before with bottled water, snacks, and lit her wood stove. But she had let it go out. She doesn't like granola bars. She used the water for the cats.

Without electricity, my house has running water but no heat, her house had heat but no water. I decided to pitch camp at Mom’s house. I grouped the sofas around the wood stove. I boiled ice and made her wash. I started cooking the food that was defrosting in the freezer and put other food into coolers, with ice from outside. Ice, we HAD ice!

We went to the local shelter to fill up water jugs. Bless all the people who helped at the local shelter! The town had called all the elders in town, to check on them, they got the same response from Mom: "I have wood, I have water, I’m fine."

I found the box of 500 votive candles. “It’s only 3:00 why are you putting out the candles?” It will be dark in ½ hr, we don’t have to sit in the dark.

I found her polarfleece pajamas, her wool socks and hat. I got the down comforters from the other bedroom. I closed off doors to unnecessary rooms.

Friends and neighbors would call to check on her, she could continue the mantra: " I have wood, I’m fine." Through all those days of the ice storm, she never, never asked how they were coping with the storm. She never called any of her friends to find out if they needed any help. She didn’t ask how my family was dealing with the storm. This behavior was unlike my Mother, it also told me that something was not right.

who?

My mother and I went out to lunch on Wednesday, eating at an outdoor venue. While we were there we saw a man walking his little granddaughter around, keeping her occupied while the rest of their group ate lunch. It was a sweet picture, her holding tightly to his one large finger. He so tall, she so small. Her leading him around to see things: a tree, the flowers, the shiny motorcycle...

Just to fill you in, dear readers, my Mother's own mother died years before I was born.

I commented to my Mom that I could only remember one of my grandparents. She gave me a confused stare. I said that I could not remember by grandfathers, as they had died when I was very young. I only remember my one grandmother.
She asked blankly "who?"
My grandmother, my father's mother.

She asked blankly "who?"
My father's mother.

"Are you talking about me?"
No, MY grandmother.

"Who are you talking about?"
Your mother-in-law.

She still could not make the connection. Then she started to get angry. "Stop playing games with me." I was surprised that she couldn't recall this person from the past. Was it that she couldn't make the connection: me to Dad to his mother, or what? She can recite all the members of her college sorority, but she can't tell me who drove her to church last Sunday.
"L__" I said.
"Oh, her." Mom groaned.

Wednesday, September 2, 2009

chargers

We all have them, rechargeable battery operated devices: screwdriver, drill, phone, dustbuster, grass clippers, stick-broom, boom-box... and each comes with a charger. An outlet plug on one end next to the heavy transformer cube then a cord and finally some strange device-specific plug on the other end.

I wanted to remount the hooks for my Mother's bird feeders, and I was looking for the cordless drill.
The bears had ripped the feeders down. I'm guessing it was the bears, what else could rip off two hooks, each held on by four 2" screws and bend all the screws into L shapes.

I had another long and hard argument with my Mother about feeding the birds beyond the winter. I know she loves to feed the birds, I do too. She has a wonderful variety of birds that visit her in the winter. However!! She has seen the bears wander through her yard. She has a friend who had bears inside her mudroom looking for birdseed.

A couple of years ago, she had two of her 6' wrought iron feeder hangers folded in half by the bears. Why do you want to invite the bears onto the porch? It is now spring, the birds can fend for themselves! Your little screen door is not going to keep any bear out of your mudroom. And you certainly don't want to come home and surprise a bear who got into your mudroom first!

So what has all this to do with cordless adapters? I wanted to use the cordless drill. I found the drill but it needed to be charged. I couldn't find the adapter. Is it in the drawer under the lamp? Is it under the sink? In the garage? In the gardening tool bag? I finally found it, it was with ALL the other adapters and chargers. Each one was in a zip-top plastic bag and they were all together in the dresser in the extra bedroom.

All of them, a dozen black chargers, that go to some appliance or tool, somewhere.

Thursday, August 27, 2009

buttons

Maybe I should have seen her button-confusion, years ago, for the beginnings of dementia, but I didn't.
Now that I look back, there was always something going wrong with her computer. I just thought it was an old slow computer, but maybe some of it was her.
She has a difficult time with anything that has buttons.
She had a cordless phone, when it rings you have to pick it up and press 'on'. If you want to call out you have to press the numbers then press 'on'. This was too confusing for her. I realized that when I would call her and she would run to the kitchen to answer that phone, "The bedroom phone's not working right." So I replaced her bedroom phone with a corded phone.
She has a electric garage door opener, with a keypad outside, "that thing never works."

She was told by her friends that she should have a cell phone, driving alone in the winter. Yes, I realize it's a nice safety feature, but this is years after she already had one, that she never used, and just paid and paid on it. So some ninny at the phone store sold her a tiny-tiny phone, with lots of bells and whistles. I sat for hours with her, trying to teach her how to use it. Keep it plugged in at all times, when it's not in your purse. "Mom, use it to make all your out-of-state calls, because they're 'free' with this phone." But, here we are again, with buttons for answer, buttons to push after dialing, buttons to end the conversation. We sat at the table together, I'd call her phone, I'd make her call me, back and forth. Next month we'd do it again, practice. If it rings, just open it up. To hang up just shut it. Nope, she could not understand it. I put a list of names in the "contacts". If you want to call me, just go up and down until you find my name - then press the green "go" button. Nope, too confusing. I have tried to cancel this phone contract, but they won't let me, she signed up for two years! Can't you see this woman has never used this phone?! Actually, she cannot even find it now, I believe she put it away someplace "safe". But the bills keep coming. "What is this bill for Mom?" "I don't know."

Wednesday, August 26, 2009

truth and lying

I no longer can rely on truth of anything my mother says.

"Yesterday I..." could mean yesterday or last week or last month. "Mary and I..." could mean Mary, Joan, or Rebecca. "You know..." No, Mom I don't know, you have to tell me.
(what's with this blogging software that we can't have tabs??? jeesh where did the paragraph go?)
I also know, as a mother, she is protecting me by not telling me things. She doesn't want me to worry about her, so she doesn't tell me some things. She doesn't tell me about her bouts of diarrhea or of falling down in the bathroom in the middle of the night. "Mom! Where did that huge black and blue come from?"
After a phone conversation with her, the only facts I know are that she is alive in her home and talking to... me?

Tuesday, August 25, 2009

Garnett Walker

I am listening to "Prodigal Summer" by B. Kingsolver, the audio version of the book. I listen to a lot of audio books while driving or working. Today, on the trip to visit my mother, I listened to chapter nine. It was the first chapter about the character Garnett Walker. First person narrative, Garnett talking about his day, and suddenly it hits me, he has dementia! The world is becoming blurred and confused around him. He wakes up disoriented, and his excuse is because he's widowed and she's not in bed beside him. (But she's not been there for years.) He drives to town and sees the landscape on the side of the road as it use to be... and not attentive to his driving. He gets to town and sees the Saturday Farmers' Market all set up, when he knows it's Friday. He's goes into town on Fridays especially for the fish special at the diner. He is fixated on his neighbor and her business and their neighborly battles. BK has written the wavering perception of an intelligent man, I wonder how his story develops.

Sunday, August 23, 2009

I took away her car keys

The car... I took away her keys... It was a horrible day.
After hearing from her friends, nurses, and other folk that she probably should not be driving, I realized that I had to be the one to take the keys away. This is what they call "tough love".
"I've never had an accident." I've heard a thousand times from my mom. "Why are you doing this to me?"

The turning point:
We met one day for lunch. After lunch, I followed her home in my car, her in her car. At one intersection she turned right instead of left. I wondered if she wanted to visit a store down there. (This is in a town where she once lived for 25 years.) As she pulled into a fast-food restaurant to turn around, she yelled out the window, "I really wanted to go the other way but the traffic wouldn't let me." (???)

Continuing towards her house, we got onto a rural stretch of road, two lanes, a numbered state highway, with a speed limit in the 45-50mph range, infrequent houses and shops. She was going 75 mph! I could hardly keep up. Later that day, I'm trying to keep my cool, I asked her if she knew how fast she was going on the state highway. "Oh at least 70."

All that day, and any time we discuss this incident, she has no guilt and no remorse, as if she was doing nothing wrong. This is not the response I would expect from my mother. Not a worry for the other drivers, the bicyclists, or pedestrians we passed. This road is posted and notorious for deer and moose crossings.
Her response is "I didn't have an accident, I got home fine, there was no one near me. What's your problem. I've never had an accident."

We made a deal, her very reluctantly, if she passes the driving evaluation test (that her doctor wanted her to take last winter) she can have her keys back.

I called for the driving evaluation. He was very gracious and kind, all through the time with my mother. She constantly berated him while she took the written part of the test. Do you know what this sign means? "I'd know it if I saw it on the street." "I don't know why I have to take this test, no one else has to take this test, I've never had an accident."

The whole time I'm in the other room, praying that she'll fail. Her reflexes are good, her vision is fine, she can use all her limbs. It's her reasoning, decisions, and memory that are so skewed. He failed her, even though she did well on the driving part of the test. She was so angry, at me and the examiner.

I have all the car keys, but her car is still in her driveway. Now we are trying to sell the car. But, I can't find the registration or title.
"They're in the glove box."
"No Mom, there is nothing in the car, nothing." In a fit, she took everything out of the car, put it in a bag, and put it in a closet, which she forgot she did.

Anyone want to buy a car? Low mileage, driven by woman who has never had an accident.

From Mayo Clinic: When To Stop Driving.

Thursday, August 20, 2009

meddlesome

I am the meddlesome daughter.
I talk about her with her doctor.
I listen to her friends, as they worry about her.
I check her refrigerator to see if there is any food there... how many opened jugs of ice-tea, how many wilted heads of broccoli, how old are the eggs, what year is stamped on the cottage cheese.
I open her windows to let in fresh air, she promptly closes them, the house is stale, stuffy, and has a lingering heavily-perfumed-cat-sand smell.
I call to verify her appointments. Why would there be four ophthalmologist visits marked on her calendar for the next two months?

...the beginning...

...with and without her... is a blog about my mother and me.
She has dementia.
I never thought that something like this could "take" my mother away from me. I'm loosing her. She's not the same person she use to be.
Today I went to a dementia care-givers support group meeting. My third time. Does it help? I think so. Just to know that you are not alone, and not the only one going through this. Laughing hysterically at something so sad, because there is no other way to cope with it.