My mom is forgetting some of you.
Please don't be offended when we see you and she doesn't say "hello" right away. Or when I say, "Mom, you remember so and so, don't you?" And she nods and acknowledges you even though she isn't quite sure. And please don't say, "Of course she remembers me!" as if I am mistaken because she really doesn't and it will make her feel bad.
The newer you are, the more likely she is to forget you, especially if she doesn't see you often. At my cousin's funeral recently, the number of people passing through and speaking to her overwhelmed her. She didn't recognize a lot of people because her distant memory is clear and she remembers the way you looked when you were a kid or when you were younger. She even said of her own brother, "I wouldn't have recognized him on the street" because she remembers a younger man and when she pictures him, she pictures a man in his prime, with a young, beautiful wife and small children.
Sometimes after we have run into an old classmate of mine or a former neighbor or even a relative we haven't seen in a while, she will say, "Oh my she doesn't look like herself." But... she does look like herself. She just doesn't look like herself when we were teenagers.
One day, my nephew asked if she will forget us too. The short answer is yes. I will never forget when my grandpa forgot who I was. I came home from work and walked into the back room and he was terrified. He not only didn't know me but he was afraid because he didn't know me.
It will absolutely suck when we reach that phase and I pray that it is ten years down the road. Selfishly, I dread it mostly because I know it is something I will have to go through alone.
There's nothing we can do to prepare for it except be around. Be around as often as possible. Call. Visit. Hug her. Listen to her tell the same stories and ask the same questions at a ridiculous clip within the short time you spend together. Be patient and just be there because, she is already forgetting some of you.
Tuesday, June 12, 2018
Sunday, June 10, 2018
Strike
For ten minutes I bent over the tub with my mom hanging from my arms unable to help me as I pulled her out of the water. All 170 pounds of her pulled in the opposite direction as she tried to pull her legs under her. Fear gripped her. Frustration came over me. She wouldn't follow directions. Or she couldn't. I don't know.
"Stop pulling!" she kept yelling in between crying about not being able to get up by herself.
Finally, she got up to her knees. I continued to hold on until I could get her up to her feet. Then I took her hands and helped her out of the tub.
"This can't happen again," I said immediately. "From now on, no baths. You can use the shower chair like dad."
I asked her if she needed anything else. She said no and started to dry herself off.
I am not equipped for this. When chaos rears its ugly head, I shift into project management mode. Every day, I am thankful for my 16 years as a manager. Immediately I ask myself, what is the task at hand, when does it have to be done, and how can I make it happen with no time and no money? So, while I feel compassion, it comes out of me like an order or a demand.
In addition to my seemingly brash communication, I have had a back surgery, three knee surgeries, and I need my rotator cuff repaired. I can't spend my days lifting old people out of bathtubs and off of the bedroom floor.
I have been icing and taking Aleve for three days. My poor dog would like a walk that stretches further than up the block and back. This morning after getting breakfast on the table, I decided I was feeling a little better. So, I went to the grocery store and bought more food than will fit in the refrigerator. I hauled the grocery bags in from the car and through the house, lamenting the fact that I have no children to do this stuff for me.
As I reached the kitchen, I passed the shower chair sitting in the hallway. Pausing, I felt a twinge of anger in the pit of my stomach. I turned to my dad and asked if mom had taken a bath.
"Yeah," he said nonchalantly.
"She got in the tub?" I asked again.
"Yeah, she did! But I was right there," he said excitedly.
"I thought we had an agreement. She is supposed to use the shower chair. No baths."
"Well, she wanted to get in the tub," he said.
I cannot adequately explain the fury I felt. Instead of responding, I cleaned up the house, put the groceries away and decided to go on strike.
No, I cannot get up and get you something to drink.
No, I cannot whip up a cheese sandwich and grab you some chips for lunch.
No, I cannot make your dinner.
No, I cannot do your laundry today.
No, I cannot carry your clean clothes up from the basement.
No, I cannot take the overflowing recycling out to the alley.
No, I cannot make the beds.
No, I cannot clean the bathroom.
No, I cannot water the lawn or clean up the dead tulip stems or trim the dying rose bushes.
No, I cannot run to the store and get more soda and lottery tickets.
No, I cannot get your pills for you or make your breakfast or get the mail or make another Costco run or do that favor your promised the neighbor you would do knowing full well I'd have to be the one to actually do it.
I can't.
Call someone else.
Do it yourself.
Maybe when you have to call 9-1-1 to get mom out of the tub, you will start to listen to me. But for now, I am on strike.
"Stop pulling!" she kept yelling in between crying about not being able to get up by herself.
Finally, she got up to her knees. I continued to hold on until I could get her up to her feet. Then I took her hands and helped her out of the tub.
"This can't happen again," I said immediately. "From now on, no baths. You can use the shower chair like dad."
I asked her if she needed anything else. She said no and started to dry herself off.
I am not equipped for this. When chaos rears its ugly head, I shift into project management mode. Every day, I am thankful for my 16 years as a manager. Immediately I ask myself, what is the task at hand, when does it have to be done, and how can I make it happen with no time and no money? So, while I feel compassion, it comes out of me like an order or a demand.
In addition to my seemingly brash communication, I have had a back surgery, three knee surgeries, and I need my rotator cuff repaired. I can't spend my days lifting old people out of bathtubs and off of the bedroom floor.
I have been icing and taking Aleve for three days. My poor dog would like a walk that stretches further than up the block and back. This morning after getting breakfast on the table, I decided I was feeling a little better. So, I went to the grocery store and bought more food than will fit in the refrigerator. I hauled the grocery bags in from the car and through the house, lamenting the fact that I have no children to do this stuff for me.
As I reached the kitchen, I passed the shower chair sitting in the hallway. Pausing, I felt a twinge of anger in the pit of my stomach. I turned to my dad and asked if mom had taken a bath.
"Yeah," he said nonchalantly.
"She got in the tub?" I asked again.
"Yeah, she did! But I was right there," he said excitedly.
"I thought we had an agreement. She is supposed to use the shower chair. No baths."
"Well, she wanted to get in the tub," he said.
I cannot adequately explain the fury I felt. Instead of responding, I cleaned up the house, put the groceries away and decided to go on strike.
No, I cannot get up and get you something to drink.
No, I cannot whip up a cheese sandwich and grab you some chips for lunch.
No, I cannot make your dinner.
No, I cannot do your laundry today.
No, I cannot carry your clean clothes up from the basement.
No, I cannot take the overflowing recycling out to the alley.
No, I cannot make the beds.
No, I cannot clean the bathroom.
No, I cannot water the lawn or clean up the dead tulip stems or trim the dying rose bushes.
No, I cannot run to the store and get more soda and lottery tickets.
No, I cannot get your pills for you or make your breakfast or get the mail or make another Costco run or do that favor your promised the neighbor you would do knowing full well I'd have to be the one to actually do it.
I can't.
Call someone else.
Do it yourself.
Maybe when you have to call 9-1-1 to get mom out of the tub, you will start to listen to me. But for now, I am on strike.
Friday, June 8, 2018
Movie Day
We are going to the movies this morning with my aunt, my mom's twin sister. My aunt just lost her middle child and she is sad. So, for a week, we have been talking about going to the movies and out for a sandwich afterward. Having a summer break at this point in the lives of my elderly parents and my aunt is a blessing. It's part of the reason I decided to become a teacher. But getting my mom up and out of the house before 10 AM is like herding cats. I imagine it is the equivalent of having about three small children or one giant, angry teenager.
She fusses at first. Then she yells at me.
"I don't want to go to the show!" she grumbles loudly from under the covers.
"You are going to the movies, mother. We have been discussing this for a week. We are not cancelling on your sister," I demand. "I am getting in the shower and by the time I get out, you better be out of this bed."
I shower. I hear my dad rolling (with the help of his walker) into the front of the house. He slams the door behind him so the dog can't follow him and probably so he doesn't have to participate in getting mom ready to leave. Mom, who can barely stand, is sitting half naked on the edge of the bed, bent over, tossing clean and folded clothes out of a laundry basket nearby.
"What's the problem?" I ask as I towel dry my graying hair.
"I can't find a bra," she pouts.
I find one and hand it to her. In the time it takes me to get dressed, dry my hair, and apply my makeup, she accomplishes getting her bra on but nothing else.
"What's the problem?" I ask again.
"I can't find socks," she says, less angrily this time.
I find socks and hand them to her.
I let the dog out, prepare her breakfast and return to the bedroom where my mom is still not dressed. And hour and fifteen minutes has passed. Her frustration level is soaring as is mine when I march into the living room and remind my father that she is also HIS responsibility.
"You cannot disappear into the living room and remove yourself from the task at hand. She is still not dressed!" I yell at him as if she can't hear me in the other room.
He returns to the bedroom and helps her get dressed. She cries. I retreat to my computer to write. Now, we will all put on happy faces and start the process of getting out to the car. We won't argue. Or yell. We will smile. After all, the neighbors might see us.
She fusses at first. Then she yells at me.
"I don't want to go to the show!" she grumbles loudly from under the covers.
"You are going to the movies, mother. We have been discussing this for a week. We are not cancelling on your sister," I demand. "I am getting in the shower and by the time I get out, you better be out of this bed."
I shower. I hear my dad rolling (with the help of his walker) into the front of the house. He slams the door behind him so the dog can't follow him and probably so he doesn't have to participate in getting mom ready to leave. Mom, who can barely stand, is sitting half naked on the edge of the bed, bent over, tossing clean and folded clothes out of a laundry basket nearby.
"What's the problem?" I ask as I towel dry my graying hair.
"I can't find a bra," she pouts.
I find one and hand it to her. In the time it takes me to get dressed, dry my hair, and apply my makeup, she accomplishes getting her bra on but nothing else.
"What's the problem?" I ask again.
"I can't find socks," she says, less angrily this time.
I find socks and hand them to her.
I let the dog out, prepare her breakfast and return to the bedroom where my mom is still not dressed. And hour and fifteen minutes has passed. Her frustration level is soaring as is mine when I march into the living room and remind my father that she is also HIS responsibility.
"You cannot disappear into the living room and remove yourself from the task at hand. She is still not dressed!" I yell at him as if she can't hear me in the other room.
He returns to the bedroom and helps her get dressed. She cries. I retreat to my computer to write. Now, we will all put on happy faces and start the process of getting out to the car. We won't argue. Or yell. We will smile. After all, the neighbors might see us.
Wednesday, April 18, 2018
Crying
Sometimes I cry when I rake the leaves or walk the dog or clean the house. I don't cry because I am sad. It's a release for moments when I want to scream or quit. There have been many occasions when I have yelled out, "I cannot fucking believe this is my life!"
The frustration comes in the unexpected and unpredictable moments. Change occurs. A shift in the trajectory of my mother's disease creates a split second of chaos that spirals quickly into a mini disaster and I want to scream or quit but instead, I just cry.
I don't need comfort or a hug or help making dinner. I need to become a mind reader so I can peer into my mother's brain and see the disconnects that cause the forgetfulness and the failures; so I can fix stuff before it happens.
For months, mom has been getting sick all of the sudden. She has a seemingly good day and then, without warning, she is nauseated and vomiting. It took a number of occurrences and months of seeking answers to discover that she wasn't eating. She was going all day without eating. Dad made sure she took her pills but didn't make sure she ate. The medicine made her sick and created a number of other side effects like insomnia that would keep her up ALL night. Usually when we say we didn't sleep all night, we mean we only got a few hours of sleep. But when my mom is up all night, she does not sleep one minute. And that causes a more rapid deterioration of the brain.
One issue resolved. So many more ahead. Probably more tears as well.
The frustration comes in the unexpected and unpredictable moments. Change occurs. A shift in the trajectory of my mother's disease creates a split second of chaos that spirals quickly into a mini disaster and I want to scream or quit but instead, I just cry.
I don't need comfort or a hug or help making dinner. I need to become a mind reader so I can peer into my mother's brain and see the disconnects that cause the forgetfulness and the failures; so I can fix stuff before it happens.
For months, mom has been getting sick all of the sudden. She has a seemingly good day and then, without warning, she is nauseated and vomiting. It took a number of occurrences and months of seeking answers to discover that she wasn't eating. She was going all day without eating. Dad made sure she took her pills but didn't make sure she ate. The medicine made her sick and created a number of other side effects like insomnia that would keep her up ALL night. Usually when we say we didn't sleep all night, we mean we only got a few hours of sleep. But when my mom is up all night, she does not sleep one minute. And that causes a more rapid deterioration of the brain.
One issue resolved. So many more ahead. Probably more tears as well.
Monday, March 19, 2018
Entering A New Phase of Alzheimer's
With the call on speaker phone, my dad attempted to chat with his brother, who is younger by six years. My uncle stayed silent on the other end. My uncle's friend Henry, another priest and Franciscan monk who studied with my uncle and knew him for roughly 45 years, responded instead. He encouraged my uncle. "John, do you want to say hello to your brother?" Henry prompted to no avail.
Finally, I spoke, "Hello, Uncle John!" Henry reported that my uncle's face brightened as a broad smile spread across it.
"Do you know what Tuesday is?" I asked.
"No," Uncle John finally responded.
"It's my birthday!" I proclaimed.
"Oh!" He replied again.
Henry interjected again, "Do you want to sing "Happy Birthday?"" And, together, Uncle John and Henry sang "Happy Birthday" to me.
We decided after that conversation that a visit to Wisconsin was imperative, even if the seven hour drive had to take place in driving snow. It would be March after all, and Wisconsin winters were never as forgiving as they had become in St. Louis, Missouri.
So, last Friday, we loaded up the car and drove to Manitowoc, WI. After spending Friday night arguing with one another and going to dinner, We visited Uncle John three times: twice on Saturday and once on Sunday morning. Our time with him proved as heart wrenching as it was lovely.
To my sister's credit, we purchased some sweets for our first visit which took place on Saturday morning after Henry took Uncle John to church. While Alzheimer's has stolen my uncle's ability to communicate, it has not yet confiscated his sweet tooth. We ate donuts and laughed at silly things for probably far too long. And then my uncle went down for an afternoon snooze.
On Saturday afternoon, we returned to the nursing home to find my uncle inconsolable. He cried uncontrollably. That said, he did speak, saying, "I've had a rough time." We all hugged him many times. He loves to hug. He holds you tight and kisses you on the side of the neck. Sometimes, he holds on for a very long time. It was a difficult experience. It shook my nephew and my dad. My mom cried with him. My sister and I stayed strong and tried to remain reasonable. He was not crying because he was sad. He was just crying. And we knew there was nothing we could do.Finally, on Sunday morning, we popped in for one last visit. There were no words on Sunday beyond a "yes" or an "uh huh" but there were plenty of smiles and lots of laughter which seemed like a good note upon which to end our visit.
The call that came three weeks ago forced our whole family into a new phase of life, not just a new phase of Alzheimer's. And, I, for one, am not ready.
Sunday, December 24, 2017
Christmasing On
Our Christmas traditions have changed dramatically over the years. Some traditions have faded to black and new traditions have begun. We used to spend every Christmas Eve with my mom's side of the family. I grew up with 11 cousins and one sister so our family gatherings were loud, fun, laden with favorite foods, and completely packed with people. The dads watched a lot of football. The moms did all the cooking and cleaning. The kids played. Then on Christmas morning, we journeyed out to spend the day with my dad's small family.
As the years passed, I began to participate more in the preparations, engaging my love for baking and meal prep. I enjoyed nothing more than baking and cooking for dozens of family members. But, our gathering became considerably smaller year after year, as cousins got married and eventually we celebrated only with my mom's twin sister and her family. Finally, after a falling out with some cousins, that tradition ended as well.
Now, as my parents stroll into their 50th Christmas together (49th as a married couple), I am merely a facilitator of joy for them. I realize that the time I have left with them is short and I also realize the time I have left preparing a Christmas is short. So, I sleep very little, I bake and cook a lot, and I try to cater to the wishes of my parents as often as possible. We do not spend Christmas with my mom's family at all. My dad has no family left. But on Christmas Eve, my best friend and her family joins us for dinner and Christmas day includes church and an early dinner with my sister and her family.
Christmas is sometimes more difficult than joyful these days. The dissolution of our family base has been most difficult for my mom but now, I think it might be toughest for me. It is so hard to watch as mom understands less and less while she forgets more and more. I miss having her help stuffing manicotti noodles for Christmas Eve dinner and squeezing out the press cookie dough. I wish she could still go out for a walk in the snow with me. But we do what we can which usually includes watching a Hallmark movie and drinking a little Rumchata. It's hard for dad too as he watches over her medicine routine and helps her help me so she can feel like she is a part of getting ready for the holiday.
Yet, we keep Christmasing on... We decorate until her heart's content and bake her favorite cookies and visit with the few friends who will pass through before the new year. We sit together to write our Christmas cards and she complains about how I vacuum. And we find happiness in the very little moments and the memories that come up for her in the process. Most of all, we hope. We hope that in spite of the difficulties and the changes and, often, the isolation, this is NOT the last year. We hope for many more.
Until tomorrow...
As the years passed, I began to participate more in the preparations, engaging my love for baking and meal prep. I enjoyed nothing more than baking and cooking for dozens of family members. But, our gathering became considerably smaller year after year, as cousins got married and eventually we celebrated only with my mom's twin sister and her family. Finally, after a falling out with some cousins, that tradition ended as well.
Now, as my parents stroll into their 50th Christmas together (49th as a married couple), I am merely a facilitator of joy for them. I realize that the time I have left with them is short and I also realize the time I have left preparing a Christmas is short. So, I sleep very little, I bake and cook a lot, and I try to cater to the wishes of my parents as often as possible. We do not spend Christmas with my mom's family at all. My dad has no family left. But on Christmas Eve, my best friend and her family joins us for dinner and Christmas day includes church and an early dinner with my sister and her family.
Christmas is sometimes more difficult than joyful these days. The dissolution of our family base has been most difficult for my mom but now, I think it might be toughest for me. It is so hard to watch as mom understands less and less while she forgets more and more. I miss having her help stuffing manicotti noodles for Christmas Eve dinner and squeezing out the press cookie dough. I wish she could still go out for a walk in the snow with me. But we do what we can which usually includes watching a Hallmark movie and drinking a little Rumchata. It's hard for dad too as he watches over her medicine routine and helps her help me so she can feel like she is a part of getting ready for the holiday.
Yet, we keep Christmasing on... We decorate until her heart's content and bake her favorite cookies and visit with the few friends who will pass through before the new year. We sit together to write our Christmas cards and she complains about how I vacuum. And we find happiness in the very little moments and the memories that come up for her in the process. Most of all, we hope. We hope that in spite of the difficulties and the changes and, often, the isolation, this is NOT the last year. We hope for many more.
Until tomorrow...
Sunday, October 29, 2017
What It's Not
Alzheimer's is not initially a fatal illness. It is a thief that steals tiny bits and pieces of being with the ultimate goal of destroying a person.
It is not an on-your-death-bed, unable to care for yourself disease. It is washing the dishes by hand but not remembering where the towels are to dry them. It is eventually drying those dishes but not remembering where they go or if they even belong to you.
Alzheimer's is not being unable to walk to the bathroom. It is bathing once and then again and maybe considering it a third time because you don't remember if you bathed or not. It is using the toilet but not being quite sure of how to properly clean yourself. It is flossing your teeth but not brushing. It is washing your hair but not rinsing. It is sometimes forgetting to go in there all together for an entire day.
Alzheimer's is not initially a situation that requires outside care such as nurses or a facility specific to the disease. It is needing to be surrounded by your family, people who love you, people who love you even though, people who can remind you that you are still completely normal even though you keep calling the dog the wrong name or you have asked 17 times what classes your grandson is taking in the last hour or you can't remember to saw with the serrated knife instead of just ripping through the crusty bread of your sandwich until very little bread is actually intact.
Over the last few weeks, life with a parent with Alzheimer's has become increasingly difficult for me. Seeing the change right before my eyes is frightening and sometimes overwhelming but I am also in awe. My mom's need to be needed is very strong right now. She wants to be useful and helpful so I have been giving her small, short, easy tasks like folding the reusable grocery bags and putting them away while I store the food in the proper places.
The answer in the midst of the changes, however, is not to get someone else to take care of her. Many have suggested that I get in-home health care for her or hire a care-giver which is, quite frankly, absurd. My philosophy on caring for elderly parents is certainly evolving but it is much like my philosophy on education. I am a facilitator for their lives. I am working hard to create an environment in which they can thrive as independently as possible. If you create a hospital-like or prison-like atmosphere, the tenants of that environment will act as if they should be hospitalized of imprisoned. If you facilitate an environment of serenity and growth where change is acceptable and not a reason to stop caring for someone, you offer a sense of hope and peace and happiness.
Alzheimer's is not an easy road to travel and there are many days, I'd like to make a left and head off on another path. I have stopped wishing we could make a u-turn and head back to simpler times and I am embracing the uncertainty of what's ahead because I won't let fear win.
Alzheimer's is not an excuse to leave. It is an opportunity to return the favor your parents gave you.
It is not an on-your-death-bed, unable to care for yourself disease. It is washing the dishes by hand but not remembering where the towels are to dry them. It is eventually drying those dishes but not remembering where they go or if they even belong to you.
Alzheimer's is not being unable to walk to the bathroom. It is bathing once and then again and maybe considering it a third time because you don't remember if you bathed or not. It is using the toilet but not being quite sure of how to properly clean yourself. It is flossing your teeth but not brushing. It is washing your hair but not rinsing. It is sometimes forgetting to go in there all together for an entire day.
Alzheimer's is not initially a situation that requires outside care such as nurses or a facility specific to the disease. It is needing to be surrounded by your family, people who love you, people who love you even though, people who can remind you that you are still completely normal even though you keep calling the dog the wrong name or you have asked 17 times what classes your grandson is taking in the last hour or you can't remember to saw with the serrated knife instead of just ripping through the crusty bread of your sandwich until very little bread is actually intact.
Over the last few weeks, life with a parent with Alzheimer's has become increasingly difficult for me. Seeing the change right before my eyes is frightening and sometimes overwhelming but I am also in awe. My mom's need to be needed is very strong right now. She wants to be useful and helpful so I have been giving her small, short, easy tasks like folding the reusable grocery bags and putting them away while I store the food in the proper places.
The answer in the midst of the changes, however, is not to get someone else to take care of her. Many have suggested that I get in-home health care for her or hire a care-giver which is, quite frankly, absurd. My philosophy on caring for elderly parents is certainly evolving but it is much like my philosophy on education. I am a facilitator for their lives. I am working hard to create an environment in which they can thrive as independently as possible. If you create a hospital-like or prison-like atmosphere, the tenants of that environment will act as if they should be hospitalized of imprisoned. If you facilitate an environment of serenity and growth where change is acceptable and not a reason to stop caring for someone, you offer a sense of hope and peace and happiness.
Alzheimer's is not an easy road to travel and there are many days, I'd like to make a left and head off on another path. I have stopped wishing we could make a u-turn and head back to simpler times and I am embracing the uncertainty of what's ahead because I won't let fear win.
Alzheimer's is not an excuse to leave. It is an opportunity to return the favor your parents gave you.
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