Everything about this is hard. Nothing about this is easy.
Strained relationships with my mother’s facility, are hard. Communication with family members is hard. And often times, frightening. Trying to wrap my brain around what my sister tries to explain to me about the bureaucratic quagmire we are steeped in, is hard. Driving an hour and a half one way to sit with my mother and try to hold her attention for an hour while she actively ignores me, is hard. It is everything. Nothing about this is easy.
I do not like the stranger that inhabits my mother’s body. I feel betrayed that it has taken her sounds and her scent and the energy I feel radiating from her body when I sit close to her. Walking into her home is like walking into a bizzarro world. All of us who have loved my mother are growing weary. And yet her body champions on, and then I find myself asking how long this will go on, and then I feel like a shit for wondering that.
On Halloween in the year 2000, I almost bled to death. That was a bad day. My husband and I had been struggling with infertility and I was going in for a routine laparoscopy to have a look around my insides and try to figure out why things were not happening. My surgery was at 7:00am, and I was supposed to be home by noon. I was a reasonable amount of nervous about this, but I had been told many times this was no big deal, they were going to make a little incision in my belly button, a few stitches, and I would be back to work the next day. Easy.
That is not what happened. By the time I was able to go home from the hospital I had spent a week there, mostly unconscious, for having lost 2/3 of the blood in my body. I had been nicked, and stitched back up, and a great mass of congealed blood had collected in my abdomen like a huge out of control mold of jello exploded onto the floor. Clean up was intensive, and the little scar in my belly button became a 6” long zipper from where they had to cut me open again and vacuum the mess all out. My doctor did not want to give me a blood transfusion because he was afraid I would contract HIV, so the healing was slow and arduous. The memories I have of that time in the hospital are of course, disjointed and bizarre, flooded over by the rotating waves of excruciating pain and momentary relief provided by morphine. A vivid nightmare from which someone might turn to the person sleeping next to them and say “I just had the weirdest dream, did that really happen?” and the person sleeping next to them would have to look into their soul and say, “Yes.”
But I also have another vivid memory of that time. It was that my parents showed up to the hospital before they wheeled me into surgery. I was surprised to see them. They had come by our house the day before and I thought they had gone back to their home. But there they were. I remember thinking, “Why are you here? This will be easy. I will be home by noon.” But my mother had this urgency in her eye. She could feel that something terrible was about to happen. She was scared, I could see it. It frightened me. They last thing she said to me as they took me away, was “I WILL ADVOCATE FOR YOU.” I remember thinking that was so weird. Like, ok. Mom, chill, thanks, but I’m good.
She did. The doctor who nicked me tried to sit with my panicked husband and parents and explain what had happened in long, laborious language and my mother looked at him and shouted “JUST FIX HER!! GO FIX HER!!” Not in a crying, weepy shouting kind of way. In a “If you don’t fucking fix my baby I swear to God all 4 foot 6 inches of me will personally, relentlessly, kick your ass into next week” kind of way.
That was my Mom.
I miss my mother ferociously. I miss everything about her.
I think about that story and ask myself if I have done a good enough job advocating for her in return. And I think honestly, probably not. There are things I do not understand about the place we are all in right now. I oftentimes look back on the choices I have made and think I could have done better by her. I'm sorry about that.
Somehow, even though the doctor told my husband and I that we would definitely not ever have kids after his mistake, we ended up being surprised with a child. A funny, smart, amazing boy who has some special needs, and who does not adapt well, and who has struggled pretty much right out of the gate. I meet with his grown ups frequently and spell out what they can and can not expect from my child. I strategize and try to turn a deaf ear to ignorant other parents with “typical” kids who judge me, who judge my child. All five foot, three-quarters of one inch, is prepared to kick a whole line of asses.
Of course this is not new to me. I know how to do it because my mother was always my, and my sister’s, advocate. She always had our backs. She showed me how to do this over and over and over again. My mother gave that gift to me, so I could give it to my son. Thanks, Mom.
mother daughter family dementia coping
Sunday, May 31, 2015
Friday, May 1, 2015
The old woman who takes her pants off does not like my mother. Neither does one the old men, or the woman with enormous bags under her eyes. Many of the residents of my mother’s new home do not like her. She is shunned by many of the residents, mostly because she is constantly speaking gibberish, and because she has lost the ability to determine what is her space, and what is theirs. She touches their stuff and they do not like that. She paces and wanders, and sometimes wanders into their zones and commits acts of great social misconduct. They can not understand her, and they actively move away from her when she approaches.
This is very weird to witness because of course you don’t ever want to watch someone you love being ostracized, and yet, she seems to truly not care. Of the handful of phrases she can still get out, “I love you,” is still at the top of the list. She loves her family, and the staff, and the nurses, and she smiles and is friendly to everyone, including the old bitches she lives with. Even the one who takes her pants off.
I also would like to believe that the other residents do not like her because we are there every day, and they are jealous. My dad is often there and people comment to me about how beautiful his dedication to her is. My sisters come at least a couple of times a week and I try to come on weekends with my guitar. My mother sees me coming and will stop her pacing to get situated in her room and wait for her private blues concert. She smiles and taps and punches in the air like she is back in senior water aerobics class. She teeters on her feet as if her body wants to dance but can’t quite remember how. I keep playing. I play and play, and for a little while, she is quiet and does not chatter on.
My sisters and I got together recently and went through my mother’s stuff at the house. Her clothes, the garish plastic jewelry she has been attracted to the past few years, the antiques. I wanted her red and green plaid sewing ham. I do not sew, but she let me play with it when I was a little girl at her feet in her sewing room. I wanted the red tin of buttons, I can still remember what they smell like, but that has disappeared. I wanted the duckie broach my grandmother gave to my mother when she found out she was pregnant with me. I wanted the diaper pin the doctor gave her. I wanted all the art supplies. My sisters and I had a peaceful time going through her stuff, and spoke to each other respectfully. There were watches, some very old, but I did not want the antiques. I wanted one she wore, and when I took it to the jeweler to get a new battery installed he told me it was ruined on the inside and would never work again. When I cried he told me it was just a cheap watch, like a Timex, and then said only “Oh,” as I walked away, muttering that it had been my mother’s.
When the doctor told us that my mother’s frontal lobe dementia would compromise her ability to communicate, I naively though she would get more quiet. I figured her words would be trapped in there, like a piece of duct tape over her mouth. I did not envision it would be the opposite, that she would talk and talk and talk and say virtually nothing. But “I love you,” she also says. I love you, I love you, I love you.
It is hard to say how much my mother recognizes me now. I bring the music, and she knows that. I think often about the lyrics to the Willy Porter song, “Unconditional”:
I will always love you, no matter what may come
I carried you inside myself, the two of us are one
No matter how you fall down, or how it comes undone
To me you will always be shiny
“My baby,” my mother said as she saw me recently. “My baby. My baby, I love you.”
This is very weird to witness because of course you don’t ever want to watch someone you love being ostracized, and yet, she seems to truly not care. Of the handful of phrases she can still get out, “I love you,” is still at the top of the list. She loves her family, and the staff, and the nurses, and she smiles and is friendly to everyone, including the old bitches she lives with. Even the one who takes her pants off.
I also would like to believe that the other residents do not like her because we are there every day, and they are jealous. My dad is often there and people comment to me about how beautiful his dedication to her is. My sisters come at least a couple of times a week and I try to come on weekends with my guitar. My mother sees me coming and will stop her pacing to get situated in her room and wait for her private blues concert. She smiles and taps and punches in the air like she is back in senior water aerobics class. She teeters on her feet as if her body wants to dance but can’t quite remember how. I keep playing. I play and play, and for a little while, she is quiet and does not chatter on.
My sisters and I got together recently and went through my mother’s stuff at the house. Her clothes, the garish plastic jewelry she has been attracted to the past few years, the antiques. I wanted her red and green plaid sewing ham. I do not sew, but she let me play with it when I was a little girl at her feet in her sewing room. I wanted the red tin of buttons, I can still remember what they smell like, but that has disappeared. I wanted the duckie broach my grandmother gave to my mother when she found out she was pregnant with me. I wanted the diaper pin the doctor gave her. I wanted all the art supplies. My sisters and I had a peaceful time going through her stuff, and spoke to each other respectfully. There were watches, some very old, but I did not want the antiques. I wanted one she wore, and when I took it to the jeweler to get a new battery installed he told me it was ruined on the inside and would never work again. When I cried he told me it was just a cheap watch, like a Timex, and then said only “Oh,” as I walked away, muttering that it had been my mother’s.
When the doctor told us that my mother’s frontal lobe dementia would compromise her ability to communicate, I naively though she would get more quiet. I figured her words would be trapped in there, like a piece of duct tape over her mouth. I did not envision it would be the opposite, that she would talk and talk and talk and say virtually nothing. But “I love you,” she also says. I love you, I love you, I love you.
It is hard to say how much my mother recognizes me now. I bring the music, and she knows that. I think often about the lyrics to the Willy Porter song, “Unconditional”:
I will always love you, no matter what may come
I carried you inside myself, the two of us are one
No matter how you fall down, or how it comes undone
To me you will always be shiny
“My baby,” my mother said as she saw me recently. “My baby. My baby, I love you.”
Tuesday, January 6, 2015
My mother is doing well in her new home. She is adjusting well and never cries. She is sleeping peacefully all through the night and is making new friends that easily understand her through her language barrier. My mother is happy to see me every time I come to see her. She understands that she lives there now so she can be safe, and does not ask repeatedly to go home. She does not try to escape. My mother’s children are remembering each other’s bruised hearts and always speak to each other respectfully and do not call each other terrible names. Everything is working, and I do not lie awake at night feeling like a monster.
And everything I just said, is a lie.
Here are some things that are true.
My mother lives in a very nice facility that has dessert all the time. I told my sister I suspected they pumped in that delicious fresh baked smell and but she disagreed, she thinks it is really fresh treats baking in the kitchen. That’s probably true. The staff is kind and appears engaged. They take the time to remember our family’s names and are eager to problem solve with us.
The facility is full of characters, all of whom have dementia, and sometimes when you get to talking to one of the residents, you may think for a moment to ask them, “Why do you live here?” and then you quickly realize why. One of the women there has 8 sisters and 3 brothers. Guess how I know that. That one likes to yodel, and when I bring my guitar to sing the blues to my mother, she will pop in and yodel along. I like that. That is true.
I took some of my son’s old picture books to read to my mother and she likes that. Especially the illustrated children’s bible. She knows those stories and likes to cuddle up close on the love seat in her room and listen. She likes to lay her head on my chest like a little girl and run her gnarled 77 year old fingers along the page while I read to her. That is true too.
My dad looks good. He talks about being sad and lonely for his wife, but he looks like he is sleeping. The house looks good too, he is taking good care of things, and he and his old, fat, black, dog go for a walk every morning. They cling to each other, my dad and that old, fat, black dog. I’m glad she is there for him. That is true too. I am enjoying time with my dad, being able to sit at a restaurant and talk peacefully, or talk uninterrupted on the phone. He goes to see my mother almost every day, and brings her treats. When I called him late the other night, I found him reading old love letters he and my mother had exchanged when my older sister was a baby. That is also true.
My mother used to have an expression that I keep thinking about. If you were going to say something, but forgot what it was, she would say “it must have been a lie.” How many lies must be getting told at my mother’s new home. There is another expression I keep thinking about, from the Rolling Stones. “What a drag it is, getting old.”
And everything I just said, is a lie.
Here are some things that are true.
My mother lives in a very nice facility that has dessert all the time. I told my sister I suspected they pumped in that delicious fresh baked smell and but she disagreed, she thinks it is really fresh treats baking in the kitchen. That’s probably true. The staff is kind and appears engaged. They take the time to remember our family’s names and are eager to problem solve with us.
The facility is full of characters, all of whom have dementia, and sometimes when you get to talking to one of the residents, you may think for a moment to ask them, “Why do you live here?” and then you quickly realize why. One of the women there has 8 sisters and 3 brothers. Guess how I know that. That one likes to yodel, and when I bring my guitar to sing the blues to my mother, she will pop in and yodel along. I like that. That is true.
I took some of my son’s old picture books to read to my mother and she likes that. Especially the illustrated children’s bible. She knows those stories and likes to cuddle up close on the love seat in her room and listen. She likes to lay her head on my chest like a little girl and run her gnarled 77 year old fingers along the page while I read to her. That is true too.
My dad looks good. He talks about being sad and lonely for his wife, but he looks like he is sleeping. The house looks good too, he is taking good care of things, and he and his old, fat, black, dog go for a walk every morning. They cling to each other, my dad and that old, fat, black dog. I’m glad she is there for him. That is true too. I am enjoying time with my dad, being able to sit at a restaurant and talk peacefully, or talk uninterrupted on the phone. He goes to see my mother almost every day, and brings her treats. When I called him late the other night, I found him reading old love letters he and my mother had exchanged when my older sister was a baby. That is also true.
My mother used to have an expression that I keep thinking about. If you were going to say something, but forgot what it was, she would say “it must have been a lie.” How many lies must be getting told at my mother’s new home. There is another expression I keep thinking about, from the Rolling Stones. “What a drag it is, getting old.”
Sunday, December 7, 2014
The weekend before we moved my mother into her new home at the dementia wing of a facility, I began to paint. It was just kind of a chance thing, my 8 year old son came across a kid’s palette of watercolor paints and for some reason he asked me, “How do these even really work?” and I said, “Well, like this,” and I knew. Not because I was a big watercolor painter, my degree is actually in ceramics and I was never a big fan of watercolors, but I knew because I had seen my mother do it so many times. Putting that first swath of loose, liquid pigment down felt amazing. So I kept doing it. My son made ink outlines of zombies, and I painted them in. Then I did still lifes. I allowed the paint to spread and fill uncontrollably on the page and I just watched it go. I work as a production graphic artist in packaging during the day, and everything there is controlled and concise down to a fraction of a millimeter. This was free and loose and liberating. It was an opportunity to honor my mother.
Last Tuesday, while my mother was at adult daycare, I took the day off work and went to my parents’ house to pack up her stuff and take it to her new home. I met my nephews at the house, they are grown men now. They, and my niece, had been babies in that house. So had I. We packed up my mother’s clothes and her toiletries and unpacked it in her new room while my sister did an hour’s worth of paperwork to get her checked in. The staff was kind and welcoming and it smelled like fresh baked goods there. It felt safe. I felt safe being close to my nephews as we worked together.
It took all day to do this transition. Dad went and got Mom from day care and we all were there to welcome her. The director offered her peanut butter cookies fresh out of the oven and when I looked at them I remembered how those were her favorite. When I was a kid and she and I would make them together I don’t remember which one of us enjoyed making the crosshatch pattern on the top more.
We stayed with my mother a couple of hours in her new home. Other residents came by and introduced themselves and the staff introduced each other as “my friend…” We stayed with her until it was time to go. And then the staff distracted her. And we left. “It is harder for the family,” one of the staff told us as she entered the secret code to unlock the frosted door and let us out. And out we went. And I wanted to die. I was certain for a moment that I would, because I was sure everyone, not just me, could here my heart shatter in my chest.
Years ago, we all sat around a table in a conference room at my mother’s gerontologist while she read my mother’s diagnosis. “I don’t want to go to into a facility,” my mother said. “Oh, by the time that happens you won’t know what is going on and won’t care,” the doctor told her. I keep thinking about that conversation, and how my mother cried, and then how shortly thereafter she stopped because she forgot why she was crying. I don’t know if she knows what is going on now because her language is so greatly diminished. I visited her yesterday and she said she wanted to go home, but she said she wanted to go home while she lived at home.
The staff reports that she is eating and smiling and friendly. They know her to be charming and pleasant. The facility serves dessert with every meal, because why the hell not, and she likes that. They like her. When we ask the other residents if they like living there they say yes, and absolutely, and very much. That makes me feel better because people with dementia tell it like it is and if it sucked one of them would have said so by now.
My mother is living in the best facility our family can afford. My sister has worked very hard and so has my beautiful, kind, loving father. He has worked very hard for a long time and since my mother has moved, he seems considerably more peaceful. He is sad and he misses her. But we all know that she is safe and is getting the very best we can possibly give her.
The day after we moved my mother into her new home, I woke up, and I painted with my son’s paints, and I felt connected to her as the thin watercolors bled across the surface of the paper. “Come on,” I told my husband, “we are going to the art supply store.” The brand of watercolor paints my mother liked were on sale so I bought a container of 12. And when I put the brush into that real paint and applied it to the paper, it almost took my breath away. The rich, intense blast of blue, and crimson, and ochre spreading freely through the water was amazing.
I wanted a better brush. I wanted to do a better job. “Might as well take Mom’s brushes,” my sister told me, “they are sitting right there in her office.” So I did. I came to the house and there they were, in her old brush holder. I remembered which one was her favorite when I saw it. The one with the clear acrylic shaft. That one is mine now. It is clean and ready to work.
I do not have an experienced watercolor painter’s hand but I know how to do this because my mother did it over and over again, and I saw her do it. It mattered enough to me on some subconscious level to absorb it because it mattered to her. And now years after she stopped painting, a chance to come alive again. Blue and crimson and ochre bleeding through the water into the tooth of the paper, connecting me to my mother as we all transition.
Last Tuesday, while my mother was at adult daycare, I took the day off work and went to my parents’ house to pack up her stuff and take it to her new home. I met my nephews at the house, they are grown men now. They, and my niece, had been babies in that house. So had I. We packed up my mother’s clothes and her toiletries and unpacked it in her new room while my sister did an hour’s worth of paperwork to get her checked in. The staff was kind and welcoming and it smelled like fresh baked goods there. It felt safe. I felt safe being close to my nephews as we worked together.
It took all day to do this transition. Dad went and got Mom from day care and we all were there to welcome her. The director offered her peanut butter cookies fresh out of the oven and when I looked at them I remembered how those were her favorite. When I was a kid and she and I would make them together I don’t remember which one of us enjoyed making the crosshatch pattern on the top more.
We stayed with my mother a couple of hours in her new home. Other residents came by and introduced themselves and the staff introduced each other as “my friend…” We stayed with her until it was time to go. And then the staff distracted her. And we left. “It is harder for the family,” one of the staff told us as she entered the secret code to unlock the frosted door and let us out. And out we went. And I wanted to die. I was certain for a moment that I would, because I was sure everyone, not just me, could here my heart shatter in my chest.
Years ago, we all sat around a table in a conference room at my mother’s gerontologist while she read my mother’s diagnosis. “I don’t want to go to into a facility,” my mother said. “Oh, by the time that happens you won’t know what is going on and won’t care,” the doctor told her. I keep thinking about that conversation, and how my mother cried, and then how shortly thereafter she stopped because she forgot why she was crying. I don’t know if she knows what is going on now because her language is so greatly diminished. I visited her yesterday and she said she wanted to go home, but she said she wanted to go home while she lived at home.
The staff reports that she is eating and smiling and friendly. They know her to be charming and pleasant. The facility serves dessert with every meal, because why the hell not, and she likes that. They like her. When we ask the other residents if they like living there they say yes, and absolutely, and very much. That makes me feel better because people with dementia tell it like it is and if it sucked one of them would have said so by now.
My mother is living in the best facility our family can afford. My sister has worked very hard and so has my beautiful, kind, loving father. He has worked very hard for a long time and since my mother has moved, he seems considerably more peaceful. He is sad and he misses her. But we all know that she is safe and is getting the very best we can possibly give her.
The day after we moved my mother into her new home, I woke up, and I painted with my son’s paints, and I felt connected to her as the thin watercolors bled across the surface of the paper. “Come on,” I told my husband, “we are going to the art supply store.” The brand of watercolor paints my mother liked were on sale so I bought a container of 12. And when I put the brush into that real paint and applied it to the paper, it almost took my breath away. The rich, intense blast of blue, and crimson, and ochre spreading freely through the water was amazing.
I wanted a better brush. I wanted to do a better job. “Might as well take Mom’s brushes,” my sister told me, “they are sitting right there in her office.” So I did. I came to the house and there they were, in her old brush holder. I remembered which one was her favorite when I saw it. The one with the clear acrylic shaft. That one is mine now. It is clean and ready to work.
I do not have an experienced watercolor painter’s hand but I know how to do this because my mother did it over and over again, and I saw her do it. It mattered enough to me on some subconscious level to absorb it because it mattered to her. And now years after she stopped painting, a chance to come alive again. Blue and crimson and ochre bleeding through the water into the tooth of the paper, connecting me to my mother as we all transition.
Monday, November 24, 2014
A place has been chosen for my mother to spend the rest of her life.
It is new and clean and big but not as big as the first place we looked. It is not as small as the third place and does not have the second place’s Doctor Octopus showering contraption. The carpet on the floor is a solid color so the residents do not get confused. It does not smell like pee or Ben Gay. The doors are frosted so the residents can’t look out and try to escape. She will go in just over a week, and they are advising us to not visit her for a few days so she can get acclimated.
I very much would like to punch someone in the face, especially some ignoramus guilty of saying that we just callously throw our elderly into old folks’ homes. And the 9 non-consecutive years I spent in training in the martial arts has allowed me to know exactly what that would feel like, to punch someone in the face. Hot, and smacky, and gratifying.
My mother would have appreciated that.
It is new and clean and big but not as big as the first place we looked. It is not as small as the third place and does not have the second place’s Doctor Octopus showering contraption. The carpet on the floor is a solid color so the residents do not get confused. It does not smell like pee or Ben Gay. The doors are frosted so the residents can’t look out and try to escape. She will go in just over a week, and they are advising us to not visit her for a few days so she can get acclimated.
I very much would like to punch someone in the face, especially some ignoramus guilty of saying that we just callously throw our elderly into old folks’ homes. And the 9 non-consecutive years I spent in training in the martial arts has allowed me to know exactly what that would feel like, to punch someone in the face. Hot, and smacky, and gratifying.
My mother would have appreciated that.
Sunday, November 16, 2014
We are actively shopping for a new home for my mother.
We have been to two so far and have two more to look at. I liked the second facility, the one where a resident named Joan wandered into the demo room and had herself a little nap on the demo bed, and the director just worked around her. My sister did not care for this one, she said the shower room was too creepy. It kind of was. They have to get the residents naked and strapped into this Doctor Octopus kind of contraption to wash them. This is why it helps to have more than one set of eyes. I am so grateful my sisters and I are working together on this. I don’t know how only-children of parents with dementia do this. I guess they do it sooner than we have. That is what my mother’s social worker told us the last time we had a family meeting to discuss how to get my mother moved into a facility. The social worker said other families would have done it by now, they usually do not have the strong teamwork we do. It was good to hear this.
What do you think the end of your life is going to look like? Me – I got it all planned out. I remember hearing a story years ago about a couple that went for a drive when Mount St Helen’s was exploding, and even though they were miles and miles away from any danger, some random rock blasted off the volcano and struck their car, splat!, and they were dead. I like to think that they were driving around after a really satisfying lunch of grilled sandwiches and microbrews, talking about how much they liked each other. Maybe they were holding hands. Now I just need to move myself and my loved ones closer to an active volcano.
My mother had the end of her life all planned out too. She wanted to die at home, and she wanted me to hit her over the head with a brick if she started to get goofy. Neither one of these things is going to happen.
Shopping for a facility to put your mother in is weird. Of course this is a business, and we are making informed choices. I call and make the appointments and juggle the emails and spend my vacation days coming to town, and my sisters ask the hard questions to the staff. I am not opposed to asking hard questions, I just often feel quiet when we are there at the facilities, doing our shopping.
I feel quiet, and I feel sad, and, I feel relieved. I have felt very afraid the past year, afraid she would get hurt at home or get hurt while she and my dad are out driving around during the day. I have confidence that she will be in a place that will keep her safe and hopefully happy. I am looking forward to my dad having some peace.
But she will not go willingly, and I feel a bit like a monster about that. When she has been out with my sister or I and we go past a strip mall or hospital, she will manage to get her words together enough to say “Don’t you take me in there.” At first I couldn’t figure out what her deal was, but then I got it. I have some vague memory of being a child and being overwhelmed with fever and being combative under the bright lights of the cold emergency room as adults tried to poke and prod at me. “You have to,” my mother told me, sadly, solidly. “You have to.”
Two more shopping sessions to go, and then a decision. Someday soon we will take her in “there.” And I will feel relieved, and, like a quiet monster.
We have been to two so far and have two more to look at. I liked the second facility, the one where a resident named Joan wandered into the demo room and had herself a little nap on the demo bed, and the director just worked around her. My sister did not care for this one, she said the shower room was too creepy. It kind of was. They have to get the residents naked and strapped into this Doctor Octopus kind of contraption to wash them. This is why it helps to have more than one set of eyes. I am so grateful my sisters and I are working together on this. I don’t know how only-children of parents with dementia do this. I guess they do it sooner than we have. That is what my mother’s social worker told us the last time we had a family meeting to discuss how to get my mother moved into a facility. The social worker said other families would have done it by now, they usually do not have the strong teamwork we do. It was good to hear this.
What do you think the end of your life is going to look like? Me – I got it all planned out. I remember hearing a story years ago about a couple that went for a drive when Mount St Helen’s was exploding, and even though they were miles and miles away from any danger, some random rock blasted off the volcano and struck their car, splat!, and they were dead. I like to think that they were driving around after a really satisfying lunch of grilled sandwiches and microbrews, talking about how much they liked each other. Maybe they were holding hands. Now I just need to move myself and my loved ones closer to an active volcano.
My mother had the end of her life all planned out too. She wanted to die at home, and she wanted me to hit her over the head with a brick if she started to get goofy. Neither one of these things is going to happen.
Shopping for a facility to put your mother in is weird. Of course this is a business, and we are making informed choices. I call and make the appointments and juggle the emails and spend my vacation days coming to town, and my sisters ask the hard questions to the staff. I am not opposed to asking hard questions, I just often feel quiet when we are there at the facilities, doing our shopping.
I feel quiet, and I feel sad, and, I feel relieved. I have felt very afraid the past year, afraid she would get hurt at home or get hurt while she and my dad are out driving around during the day. I have confidence that she will be in a place that will keep her safe and hopefully happy. I am looking forward to my dad having some peace.
But she will not go willingly, and I feel a bit like a monster about that. When she has been out with my sister or I and we go past a strip mall or hospital, she will manage to get her words together enough to say “Don’t you take me in there.” At first I couldn’t figure out what her deal was, but then I got it. I have some vague memory of being a child and being overwhelmed with fever and being combative under the bright lights of the cold emergency room as adults tried to poke and prod at me. “You have to,” my mother told me, sadly, solidly. “You have to.”
Two more shopping sessions to go, and then a decision. Someday soon we will take her in “there.” And I will feel relieved, and, like a quiet monster.
Wednesday, October 22, 2014
There is an ache at the base of my skull, the point at which the 10 year chronic pain I have had in my head radiates out from, that felt especially twisted as I spoke on the phone with the director of the facility I called today. I called there to ask about setting up a tour for my family so we could decide if this would be a good place for my mother to live.
“It’s a terrible disease,” the director said.
“Yes,” I replied.
“So hard on the family.”
“Yes.”
“Blah blah blah…” she went on, “…care for Mom, services provided, blah blah, we will love her for who she is…”
I began to be acutely aware of the stubble on my leg I should have taken care of and how prickly it feels inside the calf of my pants. It was easier to let my mind drift towards that and the ache in my head, than the pain of calling a facility for my mother. This was my first call to a facility. It will not be the last.
My father went to Texas last week, to be with his people, and I went home to share shifts of taking care of my mother with my sisters. I played guitar and sang to her for hours. Mostly the blues, because she would tap her feet and bob her head to that genre more than to the emo singer-songwriter stuff I usually gravitate towards. My mother’s mouth is usually constantly running, non-sensical words come flooding out like wild rushing water from a busted pipe, only occasionally connecting syllables that make any kind of sense. But when I play her the blues she is quiet and content. She likes Bonnie Raitt and Sippy Wallace’s “Women Be Wise.”
“Women be wise,” I sing to her, “keep your mouth shut, don’t advertise your man…”
“Uh-uh” my mother will respond.
“Don’t ever sit around, holdin’ no conversation, explainin’ what your man do to you…”
“Don’t!”
“Cuz these women now days, they aint no good, they laugh in your face, then try to steal your man from you…”
“YES!”
“So women be wise, keep your mouth shut, don’t advertise your man”
“NO!”
Mandolin has been my primary instrument for the past few years, even though I started playing guitar 35 years ago. The songs I have pulled out of my ass the past week have been buried deep in my brain, I have had to work to remember how they go and what the lyrics are. But they slowly came to the surface, and I began to challenge myself with new and creative ways to play. It was sad and interesting to watch my own mind expand, while hers contracted, right in front of me.
When I wasn’t playing music for my mother I was trying to get her to not eat her salad with a pen, or put checkers in her food, or be frightened from glimpses of things she saw on the TV. We settled on watching the food channel, that was safe. We also watched some Cross-Fit show where very athletic shirtless men climbed ropes and lifted absurd amounts of weight. She liked that too.
My mother wanted to go for a ride, but once we got in the car she wanted to go home. And once we were back home, she still wanted to go home. She tried to communicate with me that she was afraid my Dad was dead, or having an affair, and because she can not understand my attempts to tell her otherwise, it was best just to pick up the guitar and divert her attention.
She would get angry at me, and shake her fist, and glare at me like she hated me. I was amazed at how blue her eyes were when she hated me. And since I often couldn’t figure out why she was mad I just stared at her, struck at how beautiful and tragic at the same time.
It is so weird to have that disconnection with your mother. To sit close to her and feel the warmth of her body and her energy and know in your soul this is “Mom.” And to call her name, Mom, and have her turn and look at you. She knows that is her name. She earned it. And yet she is different, not who she was.
“That is what is so hard on the family, they love the person for who they were,” the director of the facility told me today. “We will love them for who they are now, and who they will be,” And I said ok, because I did not know what else to say. Next time I need to remember to tell them that she likes the blues. And I will be there to see her with my guitar.
“It’s a terrible disease,” the director said.
“Yes,” I replied.
“So hard on the family.”
“Yes.”
“Blah blah blah…” she went on, “…care for Mom, services provided, blah blah, we will love her for who she is…”
I began to be acutely aware of the stubble on my leg I should have taken care of and how prickly it feels inside the calf of my pants. It was easier to let my mind drift towards that and the ache in my head, than the pain of calling a facility for my mother. This was my first call to a facility. It will not be the last.
My father went to Texas last week, to be with his people, and I went home to share shifts of taking care of my mother with my sisters. I played guitar and sang to her for hours. Mostly the blues, because she would tap her feet and bob her head to that genre more than to the emo singer-songwriter stuff I usually gravitate towards. My mother’s mouth is usually constantly running, non-sensical words come flooding out like wild rushing water from a busted pipe, only occasionally connecting syllables that make any kind of sense. But when I play her the blues she is quiet and content. She likes Bonnie Raitt and Sippy Wallace’s “Women Be Wise.”
“Women be wise,” I sing to her, “keep your mouth shut, don’t advertise your man…”
“Uh-uh” my mother will respond.
“Don’t ever sit around, holdin’ no conversation, explainin’ what your man do to you…”
“Don’t!”
“Cuz these women now days, they aint no good, they laugh in your face, then try to steal your man from you…”
“YES!”
“So women be wise, keep your mouth shut, don’t advertise your man”
“NO!”
Mandolin has been my primary instrument for the past few years, even though I started playing guitar 35 years ago. The songs I have pulled out of my ass the past week have been buried deep in my brain, I have had to work to remember how they go and what the lyrics are. But they slowly came to the surface, and I began to challenge myself with new and creative ways to play. It was sad and interesting to watch my own mind expand, while hers contracted, right in front of me.
When I wasn’t playing music for my mother I was trying to get her to not eat her salad with a pen, or put checkers in her food, or be frightened from glimpses of things she saw on the TV. We settled on watching the food channel, that was safe. We also watched some Cross-Fit show where very athletic shirtless men climbed ropes and lifted absurd amounts of weight. She liked that too.
My mother wanted to go for a ride, but once we got in the car she wanted to go home. And once we were back home, she still wanted to go home. She tried to communicate with me that she was afraid my Dad was dead, or having an affair, and because she can not understand my attempts to tell her otherwise, it was best just to pick up the guitar and divert her attention.
She would get angry at me, and shake her fist, and glare at me like she hated me. I was amazed at how blue her eyes were when she hated me. And since I often couldn’t figure out why she was mad I just stared at her, struck at how beautiful and tragic at the same time.
It is so weird to have that disconnection with your mother. To sit close to her and feel the warmth of her body and her energy and know in your soul this is “Mom.” And to call her name, Mom, and have her turn and look at you. She knows that is her name. She earned it. And yet she is different, not who she was.
“That is what is so hard on the family, they love the person for who they were,” the director of the facility told me today. “We will love them for who they are now, and who they will be,” And I said ok, because I did not know what else to say. Next time I need to remember to tell them that she likes the blues. And I will be there to see her with my guitar.
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