mother daughter family dementia coping

mother daughter family dementia coping

Wednesday, February 19, 2014

"We get up, and we go, and we eat, and we go, and we eat, and we go, and we eat, and... then we go to work," my mother told me. Yeah, that sounds about right. My parents drive around a lot, due partly to my dad's inability to stay still and my mother's need to wander. The past couple of times I came to visit she got bored and put her coat on, and so I grabbed my car keys and drove her around for about 15 minutes. She likes that, but last time got increasingly more agitated that my dad was not in the back seat.

But that was about the extent of her agitation. She was in a pretty good mood. "Uppity," my dad would say. We have been trying to tell him for decades that that is not a nice thing to call someone, but he can't seem to grasp that and continues to use "uppity" however the hell he wants. Shit, he's almost 81 years old, if he wants to call people in good moods a word meaning racist arrogant snob, rock on, Old Man.

"See that?" my mother asked me, pointing out the glass sliding door to their backyard with her gnarled, arthritic finger, "1... 2... 3... 4... 5... 6..." She counts 6 of something out there constantly. I can't tell what because so much of what she says is gibberish now. Not that long ago she at least understood the cadence of conversation. You could say something like "I fell down some stairs and broke my arm," and she would smile and say "Isn't that wonderful?" But the meter of conversation now is all cockascrew and she interrupts and talks when you talk.

Cockascrew. That was an expression she liked to use. Shitmunkledunk - that's a color of displeasing, drab brown. Lord love a duck - that's something you say when you are mildly surprised, but not too freaked out. Holy catfish. I'll be go to hell. Fuck a duck. That one is different from Lord love a duck. Fuck a duck was used when say, she burned something she was cooking. I'll be go to hell was used when new interesting information was presented to her. For instance "Mom. Did you know scientist have decided Pluto no longer qualifies to be a planet?" "No!" "Yes." "Huh. I'll be go to hell."

My mother loved new information that challenged the norm. She said to me years ago, "Did you know there was a woman with Adam before Eve and her name was Lilith? Yeah, I guess Adam tried to tell her what to do too much and she was like FUCK THIS and she took off. I don't know where she went, but there is going to be big music festival named after her. You should go. All women artists." When The Lilith Fair came to our state, a pack of our friends and my boyfriend and I swung by my parents' house and we picked them up and we all went together. We had a wonderful time. My parents were always very comfortable with our friends, and when one of the more adventurous women pulled up her tank top to show everyone her new piercings, swollen and crusted with blood, my mother said nothing in judgement. She just asked for a drink off the bottle of vodka we were passing around. My boyfriend asked me to be his wife at the Lilith Fair. My mother liked that.

Holy catfish. That was a good day.


Monday, February 3, 2014

The weather relented enough for me to go visit my parents yesterday. I had a nice time. My mother was sweet and funny, cracking jokes in her language that only she got, and her laughter was infectious. I couldn't help to laugh along. My dad continues to buy her new clothes and he takes the time to have them tailored for her. She really looked sharp.

When I got to the house she was happy to see me and wanted to be engaged with me. We were going to go to lunch, and there was a slight delay getting out of the house because she had taken one of my dad's gloves and hidden it somewhere. "Go and get your purse and look in there for my other glove. Do you know where my glove is Sweetheart? Is it in your purse? Go and get your purse and see if my glove is in there." My dad did a few rounds repeating this. It's not unusual for him to talk to her like that and it is not unusual for me to alternate between wanting to scream at him "SHE CAN'T FUCKING UNDERSTAND YOU!!" and feeling terribly sad for him.

We went to a dingy diner they like where everything feels weird and dirty and yet familiar and nonthreatening. There is a bleak, cloudy, giant fish tank when you first walk in that houses four enormous gold fish and nothing else. The waitress appeared to be around 70. Her hair was beautiful and her lipstick was on the coral side and she walked like her feet had been hurting since breakfast. She clearly knew my parents and was sweet and patient with them. My dad ordered my mother a mountainous waffle stacked high with syrupy apple slices and whipped cream, and I held my breath as I waited to see if my mother would remember how to use her silverware, or just go in with her hands. She struggled at first with her fork, but got the hang of it, and when I went to cut her food for her my dad kindly took over, and the waitress brought them extra silverware without being asked as if they had all done this dance dozens of times before. No one thought twice when Mom used her sweater instead of a tissue to wipe her nose. It was safe there.

We ran some errands, including going to one of those huge hardware stores people without dementia easily get lost in. I held my mother's hand through most of this and it felt good. Her gnarled hands were warm and small in mine. We all marveled at the self serve machine that cuts keys. At one point my dad got a few steps away from her and when she turned to look for him, he briefly fell out of her sight. "Where is my husband?" she asked. "Right there," I said, "in the overcoat and hat. Doesn't he look handsome?" "YEAH HE DOES!!" she said lustfully. "He looks GOOD!!"

We went back to the house and when she saw I had brought my mandolin she asked me to please, please play them some songs and I did, and she was happy.

And then, we watched the old home movies my dad had asked my husband to convert to DVD. I am 10 years younger than my next sister, and it was very interesting to watch who we were before "we" included "me." Everyone was so young. I kept looking for signals of who everyone would turn out to be. But this was not a documentary meant to educate the youngest sibling yet to be born, it was the things that mattered to the person working the camera at that moment. Landmarks, zoo animals, camping trips. "Look!" my dad said to my mother "there's your dad! And your mom! Look Honey! At the TV!" But my mother couldn't get it. She looked out the window, puzzled. Their obnoxious black lab began to demand to be fed, barking her sharp, piercing bark into my dad's face, like two cymbals crashing together. He tried to ignore the dog. "Look! There's your cousin!" he said to my mother. The dog barked and barked and barked. Like a nail into my head. My mother struggled to understand. My dad, defeated, moaned and went to feed the dog. Coming back into the room he closed all the blinds, trying to drive my mother's focus towards the tv, and images of her past that now meant nothing to her.

I had to go. I had plans at home and so I packed up my mandolin, and put my coat on, and started towards the door. My mother stopped me and held my hand. She looked right into me. Her eyes were so blue. Funny, she used to say that about her own dad when he was old and tired. That his eyes were so blue. She rambled something and in the middle of it was "I DO love you. So much." "I know, Mom" I said. "And I'm sorry. I'm sorry I'm so…" and she knocked on the side of her head and stuck her tongue out to the side, tears welling in her eyes. I took her face in both my hands and said the same thing she would have said to me "Listen to me. You have NOTHING to apologize for. Nothing. You are good. I love you very much." I pulled her into me and she rested her head on my breast. It was like holding my child. She smiled.

I got into my car and my mother stood there on the other side of their storm door, smiling and waving and blowing kisses at me. Like when I would drive away to go back to college. From inside my car I told her, goodbye Mom. I love you.

Saturday, February 1, 2014

Thursday was the day the people came to my parents' house to evaluate the intensity of my mother's decline to see if she qualified for a Medicade waiver. This is complicated and I don't understand all of it and I am very grateful that my sister does and that is all I have to say about the bureaucracy of that.

It is strange to hope that she will be "bad enough" to qualify, and to know that she is bad enough. I was not there when it happened. My father and my sister were. When I asked my sister afterward how it went she said they would point at her and ask Mom "Who is this?" and Mom would babble incoherently. We both felt it was nice that in the middle of Mom's ramblings she squeaked out one of the syllables of my sister's name.

This winter continues to be unkind. I haven't seen my mother in a long time because the roads have been slippery or the wind chill has been as much as -35 below, or because it snows and snows and snows and snows. I called to check on my parents yesterday and my Dad asked if I would like to try to say a few words to Mom. I said yes. I just wanted to hear the sound of my mother's voice, even though I knew connecting with her would be limited. She got on the phone and rambled confusedly about my car breaking down and them having to come get me. And then, clear as a bell, she said "Well Sweetheart, I can hear in your voice that you are working, so I will let you go for now. I love you!"

I was so pleased for a second to have heard her say that, even though when she used to say it, it would cut me to the bone. This was her catchphrase a few years ago when she didn't want to talk on the phone to me anymore. We would be "chatting" and out of the blue she would say that and I would want to yell into the phone "Wait! I have questions about how to be a mother! Or how to be a wife! Or how to do a lot of things that I know you know that you can guide me with! Wait!" But she would have already hung up.

Yesterday when she said it, there was a warm rush of comforting familiarity so I just caught my breath and said "I love you too, Mom."

But she was already gone.