Thursday, September 30, 2010

the birthday card

It's WB's birthday, my niece, Mom's granddaughter.

I started a few weeks ago, when we were out shopping, asking her if she'd like to pick up a birthday card for WB. She stares at me, stares at the grocery cart, then wanders away from the greeting card section. The next time we went shopping, I'd ask again. I'd talk about WB, how's she's grown into such a smart young woman, that she's made the varsity team this fall, how much she likes hearing from you.... no response from Mom.

Mom collects a lot of things, and one of them is cards. She is always picking up an extra greeting card. "For a friend." she'd say. Her stash of birthday cards is huge.

So at her house one day this week, I bring it up again.
It's WB's birthday this week, why don't you send her a card.
Mom finds a birthday card in her stash, one that you might send to a five year old.
"It's so cute." she says.
Yes it is Mom, but WB is a young woman now, she's not a little baby, that card is for a little girl.

My brother has said that for the past few years, Mom has been sending very juvenile cards and gifts to the girls, things that were not really age appropriate, and sending the same gift multiple times. These signs of her dementia that we did not recognize.
"Oh the girls would like these, the girls would like these, the girls would like these, the girls would like these..." They probably would if they were four or five years old.

Mom goes to look for other birthday cards. She brings back some that are definitely for her peers, jokes about saggy skin and too many candles. She finds one that is just a basic birthday card. She starts writing, thinking, and writing. It's painful to watch her at this task. Then she abruptly rips the card in half and grabs another from the table. She's writing and thinking, then I see her slip that card under her thigh, she takes another from the table.
Oh, that's a pretty card, I think WB will like it. I say, trying to put a positive light on her frustration. She writes in the card, closes it, and then asks for her address book. She copies WB's address successfully onto the envelope. I peek inside the card, she has not signed it.
Mom, why don't you write "Love Grammy" on the card too. She writes some more and then seals the card in the envelope.
"I want to put some money in the birthday card, do you think WB would like that?"
Yes, Mom, I'm sure she would like that, that would be very nice.
I take the card into the kitchen and try to peel open the envelope while the glue is still damp.
I don't know what Mom puts in the card, it could be two $1's or two $20's. She's being secretive, she doesn't want me to see what she's doing. That's fine, as long as the address is correct.

Happy Birthday WB - this woman, your grandmother, once loved you very, very much, I know she did. This woman, your grandmother, is now lost and confused. However, I know she knows you, and loves you still, because she has proudly showed me your varsity team photo 50 times in the past month!

Monday, September 27, 2010

no, no, no

I think the time has come, I can no longer take Mom to the grocery store. The carriage is almost as empty at the end of our shopping session as it was at the beginning, just cat food and ice tea. There is nothing she wants. "I have so much food in the refrigerator. I should eat the food in the pantry first."

Her refrigerator is bare. The pantry holds baking staples and old boxes of pasta and rice. She no longer cooks or bakes. She no longer likes pasta or rice. Does the Prince Spaghetti company have a museum? They can have her pasta boxes, a history of their box designs.

Her aide says she is loosing her appetite, I have seen this too. Breakfast is half of a banana, half of a piece of toast or muffin, enough juice to swallow her morning pills. "Oh, I can't drink all that juice, it's too much." She won't eat yogurt anymore, she doesn't like waffles or pancakes. She use to eat a box of Wheaties a week, the box in the cabinet is from the 1990's . She use to love hot cereal, no longer. She hasn't had an egg in years. (see old post)

She doesn't make herself lunch and no one is there to prepare it for her. The past few months her dinner has been half a sandwich and some cut vegetables with dip, or a salad with sliced turkey. She won't let the aides cook her a chicken breast, fish fillet, pork chop, or even a piece of kielbasa. For a while she was excited about frozen dinners. "Oh, I have SO much food in the freezer, I'll eat that." Now the boxes of entrees pile up, gathering frost burn.

I try to make sure she has healthy snacks in the house. They sit in a basket on the counter, I know if she can't see the food, it doesn't exist. Out of sight - out of mind! Blueberry breakfast bars, oatmeal raisin cookies, washed grapes/berries, bananas, and dried fruit all waiting for her to snack on them. And there they stay, week after week, until I replace them with fresh ones.

At the deli-counter she would remind me, at every visit, that she only needed 1/4 lb of turkey or roast beef. Now she reminds me that she only needs one or two slices of turkey for the week. "Oh it's so much food, I don't want it to spoil before I eat it all."
My thoughts echo the refrain... if you don't eat any of the food, of course it's going to spoil.

I ask "How about some..."
"No, no, no!" the words jump out of her before I can finish my question. She's shaking her head and tuning me out. So frustrating.

In the produce section she dismisses all the bags of pre-washed salad greens. "Those pieces are too big, those pieces are too green, I don't want cabbage in my salad. Look at that, it looks like garbage in a bag." I try to get her to pick out some vegetables, vegetables she use to like: Corn "No, no, no." Carrots "No, no, no." Zucchini "No, no, no." Asparagus "No, no, no." Green beans "No, no, no." Butternut squash "No, no, no." This week I told her she HAD to pick one vegetable, because the aide said so, and she did. Wow, fiblet to the rescue.

We walk to the freezer chest. Here are some small precooked shrimp rings that include dipping sauce.
Oh, Mom, here is a small dish of shrimp, how about this? I stress the small, as in, not too much food. I know cold shrimp is one her favorite appetizers.
"No, no, no."
I thought you liked shrimp?
"I only eat shrimp on special occasions."
Every day can be a special day, I mumble to myself, I feel defeated and discouraged.
I guess she doesn't remember Mrs. Gump and her 1000 ways to prepare shrimp.
"No, no, no." is her response to most everything I say.

Mom has no dietary restrictions, she is not diabetic, she doesn't have any problems with chewing or swallowing. I am fortunate that she can eat anything, if she only wanted to.

I bring up containers of leftovers or baked goodies from my kitchen and vegetables from my garden. Some times that works, some times it doesn't. Blueberry cake, from her favorite aunt's recipe, sat for two weeks in her fridge, before it got tossed.

I have written up menu idea for Mom's aides. The aides and I conspire together to think of ways to entice Mom to eat. She use to enjoy eating things like spinach quiche, kielbasa and sauerkraut, smoked salmon on pumpernickel, or beans and hot-dogs. These foods sit waiting on her shelves.

Tuesday, September 21, 2010

world peace and awareness

Today is World Alzheimer's Day, a day to raise awareness about this devastating disease . Today is also International Day of Peace, a day to remember that we need to work for the end of world conflict and war.

My brain laughed maniacally this morning when I saw both notices. There is no peace with Alzheimer's disease, there is no peace with dementia, at least not that I've seen.

Dementia rips through a person's brain causing havoc and mayhem. Dementia blows up the life of the whole family, causing adult children to fight with each other for "what is best for Dad". Dementia exhausts the resources of everyone it touches: financial resources and emotional resources. There is no peace in a family when a wife screams at this "stranger" who is helping her in the bath; yelling and punching a man she has loved for 40+ years. There is no peace, when this woman in my Mother's body says she hates me.

After Mom is gone, after we've lost the war with Alzheimer's (because Alzheimer's always wins), when peace finally comes to our family, there will be a barren battlefield in our hearts, there will be scorched earth where there should be happy memories of Mom's life.

War is Hell and so is dementia.

Wednesday, September 8, 2010

how did it get there?

One of those days...

Gather all the trash, load up the car, and drive five miles to realize that the transfer station is closed on Wednesdays.... bring the smelly mess back to Mom's house.

Drive ten miles to run other errands and hear Mom say in a panic "Where's my ring?" She has lost her ring. She has lost the ring that W__ gave her, she's never taken it off, and it's not on her hand. I pull the car over and she starts looking everywhere, in her pockets, on the car floor, she then dumps out her purse.
She starts to tear up, "It was the ring W__ gave me."
So much for our other errands - turn the car around.
Ok, Mom, we'll backtrack and try to find it. All I'm thinking is, thank goodness the transfer station was closed, I don't have to go dumpster diving to find a ring. (Trash bags yes, dumpster no!) We checked the post-office. We check the driveway at home. We checked the dryer, the pile of clean laundry, her pockets again (Mom always walks with her hands in her pockets.)

I'm thinking this ring could be anywhere. Mom has lost a lot of weight in the past few years, because of her lack of cooking and desire to eat, she is shrinking, her fingers have become bony. That ring could be anywhere.

I check the bathroom sink area, it's not there. Check the towels and hamper. I don't immediately check the kitchen sink area, because she doesn't use the kitchen anymore.

I start poking at the mountain of photographs spread out on the table. The pile she has been sorting through for months. Look around on the floor, nothing.

"Here is it." she coos. "How did it get here? I never take it off." It's with all her other jewelry! She has threaded it onto a necklace with her high school and college rings. "I never take that ring off, W__ gave it to me, how did it get here?"

I don't know Mom, I don't know.

Sunday, September 5, 2010


I do it, you do it, we all forget people's names. But with dementia it is so much harder.

Mom needed to contact the woman who does her income taxes, so we could make an appointment. This person is also a friend from town, a member of the groups and organizations that Mom belongs to, someone she has known for 20 years.

Finally I come up with C__'s first name, "Doesn't C__ do you taxes?"
Now I hope that Mom can fill in C__'s last name. No, it's not connecting.
"Give me my address book" Mom says. She opens up the first page and starts to read. She is reading every entry, looking for C__'s name.

Mom has had this tiny address book for at least 40 years. Everybody is in it. Every relative, all her friends, sorority sisters from 50 years ago, church friend from here and there, and every repair-man that ever came to the house. Since this address book is at least 40 years old there are multiple entries for practically everybody; all my college dorm addresses, my first apartment, and all my homes; and more recently my kids' college addresses, their apartments and homes. This book is FULL of addresses, no one and nothing is every erased.

I watch Mom, carefully reading every entry in her address book, looking for C__.

I was always the kid in school who said "How can I look up a word in the dictionary if I can't spell it?!" This is so much more painful, watching Mom hunt for a name she can't remember.

Finally the dementia demons take pity on my brain and connect the correct neuro-pathways.
"Mom, is her name C__ R__, is this your friend's name? Let's look in the R section."
"Of course, here she is." Mom says.

Thank goodness we didn't have to wade through the F, G, K, and L sections of the address book, full of all the family names.

Now, you may be thinking "at least it wasn't the phone book." Well no, I have seen Mom do this same thing looking for an entry in the phone book.

the whole shebang

It's been two weeks and I'm not sure if I've calmed down enough to write about this. I know I'll feel better once I've put "pen to paper" and written my thoughts down.

On Monday I asked Mom, again, if we could go look at an apartment.
"No, no, no, no!"

I had been hopeful, two weeks ago when I asked. She told me "not today". When I asked if we could do it next week, she said yes.

I know I'm sugar coating it, it's really an apartment in an assisted living home, I'm taking tiny steps.

The doctor said you can't live alone this winter. (Blame it on the doctor.)
She immediately shut down, "No, no, no, no! I don't want to discuss this. Go home."
Can we talk about this for five minutes?
"No, no, no. Go home." eyes closed, she's holding her head and shaking back and forth.
I try the temporary approach.
Lots of your friends move away for the winter. You spent a few winters in Florida with W__, that was fun.
"No, no, no, I don't want to discuss this. Go home."
There is no opportunity for discussion, there is no reasoning, or convincing her. She has shut me out.
Ok, Mom, I'll see you on Thursday.

On my way home I'm in tears, I cannot drive and cry at the same time. I call my brother and ask him to call Mom in a little while, to check on her and get a feeling for her temperament. Is she alright? I then call the Alzheimer's Association help line and pour out my soul to a very helpful person. That night my brother reports back, that Mom said she had a great day today and seems in good spirits.

Late Wednesday night I get a phone call from one of Mom's aides. Mom had called her crying, stressed, and obsessing.
"Come and get me I want to run away."
"Let me move in with you."
"Don't let her put me in a nursing home up north."
Oh crap. That she could find her aide's home phone number and make a phone call tells me she's been stressing and obsessing about this for a long time.

It's interesting that she never calls me to fight back, to argue, to yell, to cry, she always talks to someone else.

I try to find calm, to find inner strength. I call Mom.
Mom, I'm sorry you're upset. I'm not moving you into a nursing home, I never said that. You are not sick, you can't move into a nursing home unless you're sick. But, you need to move before the winter.
Here I stop talking. She's not listening to me, she has shut me out. She has dug in her heals, deeper than before. She has some argument points, so I know she has been stressing about this since Monday.
"I have three sources of heat, a fireplace, a wood stove, and oil, if I'm cold I have blankets, I have socks and sweaters, I can live alone, I can live by myself, I don't want to leave my home, I want to stay in my house, I want to stay in my house this winter, I'm going to do it my way, let's forget this conversation, I don't want to leave, I am not leaving my house, I have three forms of heat, I can live alone, I want to stay in my house, I am not leaving, let's forget this conversation, I can live alone, let's forget the whole shebang, we're going to do it my way, let's forget this conversation, I can live alone, let's forget the whole shebang, I have a wood stove, I have lots of blankets, I am not leaving my house, let's forget the whole shebang." She yells at me for fifteen minutes.
Ok Mom, I'll see you tomorrow morning. I can't respond to her argument, she won't hear me.

Thursday's visit with Mom was an ordinary day of errands and chores. The elephant was in the room but we were ignoring him. Mom won her argument, we'll forget the whole shebang.

We'll forget the whole shebang until the day comes when I have to bring you to live at the assisted living home and leave you there. Leave you there, screaming at me. Tearing your deeply rooted feet out of your familiar surroundings, from your cats, and the blue house you love so much.

And you will never, never forgive me.

Please forgive me Mom, forgive me for wanting you to be safe, forgive me for having to make these decisions for you.

Thursday, September 2, 2010

truth and lies

Who would have thought, I would learn to lie from my Mother.
(She's teaching me to swear too, but that's a different story.)

Well, that's not quite accurate either, I'm learning to lie because of my Mother.

My friend PW came along with me today to visit my Mom.
PW understands dementia and Alzheimer's and has been a support for me through all this. She's also a very outgoing and friendly person and can easily converse with folks and make them feel welcome.

There weren't many chores to do today at Mom's, so it was just a day to visit with Mom and take her out to lunch.

Mom has a new person to talk to, she has met PW many times before, but she doesn't remember. She has someone new to tell all her stories to. PW understands, she knows that much of what Mom says is not true or accurate, she understands lost words and incorrect words. She doesn't mind, she's carrying on this conversation with Mom like it's... the most interesting stuff she's heard in years.

Then I understand, PW is fabricating her stories just as much as Mom is confabulating hers. PW whispers in my ear, that I'm trying too hard.

I try to bring to the conversation truth and reality, and it's too much, and she can see my frustration. I have to learn to let go and go with the flow, I have to learn that the facts no longer matter, the mood and temperament of the conversation matters. We were all having a nice lunch, talking about absolutely nothing real.

I feel like I'm Alice talking to the Queen of Hearts. There are words being spoken but I can't follow the conversation. What does it all mean? What does it matter?

On the way back to Mom's house, Mom sees a car like her car, the one I took away. "Oh, a Subaru, I had a Subaru just like that." (This is the second time we've heard this in ten minutes.) And before Mom can get another word out, PW chimes in "Oh I had a Subaru too, but I like my Toyota better."
I'm just about to say "I didn't know you had a Subaru" when I again realize that (1) PW never had a Subaru, (2) she has deflected the conversation, (3) stopped Mom from ranting and fixating on her lost car, and (4) told another fabrication.

Can I use this approach in the rest of the world? I'm a shy person, who cringes at making small talk at cookouts and dinner parties with people I've never met before. Next time I'm faced with that awkward silence at the dinner table, I think I'll mention my safari excursion to Botswana. What's a little fabrication among friends?