Friday, April 24, 2015

Important read

Here is an article regarding dementia, Alzheimer's Disease and having family to help make important decisions for the elderly. Angelo E. Volandes, MD, makes some thought-provoking claims regarding the aging baby-boomer generation and how more people do not have families to help make difficult decisions regarding end of life care. He's written a book, The Conversation: A Revolutionary Plan for End-of-Life Care, and this article in Psychology Today is a must read.

Dying Demented and Alone

Wednesday, April 22, 2015

Mom met dad on wheels

This post is part of a log of phone conversations between me and my mother who has dementia. We are reminiscing and catching up. Mom is 91 and moved from the family farmhouse to a sort of assisted living apartment in upstate New York. I live in Florida. We have not had much contact for several years until I started calling her every few days, in August. My goal is to reconnect with her, be someone who will listen to her and share memories. These posts include parts of our conversations I feel important to write about such as events and things she wants to discuss from her life, her family and growing old. She so enjoys our phone calls. Her memory comes and goes. It seems like she has more alert days since I started calling, but that may be my wishful thinking. I am learning a lot about her status in life and how it's changed over the years from being the strong maternal figure to an elderly person who at times feels forgotten as well as forgetful.

"Today is dad's birthday," I told mom when I called Tuesday afternoon. "He would've been 94 years old."

"Is it the 21st?" mom asked. "I thought today was someone special's birthday. But, I couldn't think who. Huh. How old? 94?"

That was how we started our conversation. I hoped to talk mostly about him and her best memories of life with this well-liked man. Dad had Alzheimer's Disease and passed away in 2005.

Growing up, I thought he was a simple man. He took his responsibilities seriously, valued friendship and respected everyone. He worked in order to earn money needed to live and raise a family. He would've preferred to spend his time farming, but it didn't pay all of the bills. He loved his children. When we were young we would follow him around the farm all day long. He was clever with making stuff and playthings out of nothing. But, as we grew up, became teenagers, we had a harder time maintaining that same relationship. He knew less and less about what we were doing or how we felt.

Some of that had to do with mom. If something bad or upsetting happened, we had to go to mom. Her first words would be, "Don't tell your father." She wanted to keep him from worrying or "having a fit." It made sense and seemed to me like a natural instinct to protect the bread winner from more stress. Years later, when raising my own children, I realized how wrong that was and unfair to dad as he never got to grow up with us. I am sure mom thought this was the right way to handle her family.

Lately, she talks more about her family, her parents and growing up poor. She feels that she gave back to her parents by being a devoted daughter and taking care of them in their older years. I've already written about much of what she recalls. She's softened her feelings about stuff her parents did or didn't do when they were raising mom and her siblings, but that's how life works. We forgive, forget and try to be more understanding. No one is perfect, not even ourselves.

For dad's part, he grew up under the foot of a very harsh and abusive father. I think fatherhood was a mystery to him because of the way he was treated and because he never wanted his children to be mistreated. His reaction was a hands off approach. Don't get me wrong, he was loving and caring, but was never really involved with our lives as we got older.

Love at first sight
I asked mom about the first time she saw dad. "It was at the skating rink," she replied. In her day and mine, roller skating was a huge part of a young girl's social life. She went on, "I loved going roller skating with my friends. Right away, I knew he was someone special.

"He was a good skater. He loved to perform, a big show-off. Isn't that funny? Leslie wasn't one of these people who always wanted attention and never really tried to stand out anywhere else, but at the rink.

"Good skaters would get in the middle of the rink to do tricks and perform. He would do jumps and different steps. He was so good. I wasn't a good skater and didn't dance (skate) with him. I just skated around and around."

They met at the Coliseum Skating Rink in Ceres near Little Genesee  N.Y. "He was a great guy. We drove all over all over to skate in Wellsville and Olean and further away. We didn't drink or smoke. Well I drank Pepsi. He loved root beer, so that's probably what he always drank." She says it was the most fun she'd ever had, to be with him.

"He was well liked," mom reflected. "He was funny, told jokes, always pulling tricks on people and loved having friends."

Mom had a funny but embarrassing experience recently, that reminded us of something dad did when he was a kid. His family was at a park on a family picnic, The kids were all over the place playing ball and wading in a stream. Dad was getting hungry and decided to head back to the picnic table where his mother was setting up the food. On the way, he got a whiff of fried chicken and sat down to eat, with strangers. He had some chicken, then got up and left. He later claimed he didn't realize he'd mistakenly sat at the wrong table. But, the chicken was very good.

Mom told me she saw that a bunch of people were going into her church which is next door to her apartment complex. She gets confused and thought it was Sunday and time to go to church. So, off she went and when she got there, people were sitting down to long tables set for dining. She sat down and ate with them, then she found out it was a private dinner for some group. she was she was so embarrassed, but the meal was good.

I reminded her how at supper when I was a toddler, I would point and say, "Noot, Noot" when I wanted mashed potatoes,  Well, dad loved that saying. He pointed his fork and squealed, "Noot, Noot," every time mashed potatoes were served. Probably did this for the rest of his life.

My daughter Stephanie remembers grandpa and his magic finger. If you had a loose tooth he would offer to help with his magic finger (by pulling it out). I don't know if he actually fooled anyone with that trick. She was told it was either that or the string tied to the tooth and a doorknob remedy. Stephanie kept her distance when she was shedding her baby teeth and preferred to let nature, or maybe an apple, take its course.

Mom says she enjoys my calls and finds herself thinking about old times after we talk. I told her I enjoy our talks, too, but for now it is time to make dinner. I promise to call in a few days and we said our goodbyes.

"I love you, mom."

"I love you too, dear."

Here is a photo taken by Sherman Clarke in 2010 and well after the Coliseums' hay day.

Monday, April 20, 2015

Conversation follow-up for last post and what I've learned about myself

This post is part of a log of phone conversations between me and my mother who has dementia. We are reminiscing and catching up. Mom is 91 and moved from the family farmhouse to a sort of assisted living apartment in upstate New York. I live in Florida. We have not had much contact for several years until I started calling her every few days, in August. My goal is to reconnect with her, be someone who will listen to her and share memories. These posts include parts of our conversations I feel important to write about such as events and things she wants to discuss from her life, her family and growing old. She so enjoys our phone calls. Her memory comes and goes. It seems like she has more alert days since I started calling, but that may be my wishful thinking. I am learning a lot about her status in life and how it's changed over the years from being the strong maternal figure to an elderly person who at times feels forgotten as well as forgetful.

I had a great conversation with Chuck Meyers, a long time friend who is familiar with the my mom, our history and the issues facing our family. He is so right with his perspective and it made me think about my place as well as reactions to what happens between me and my mom. I look back and can see us sitting at the table, having a very similar discussion. 

The dementia does play a large part in all of this. Her perceived needs are a lot more intense, since all of the time and instances that normally take a person brain energy to digest is forgotten and she had this big void to fill. Oh boy. Well, that is my non-professional way of looking at it. I will boil it down to: controlling her life and the lives of those around her was calling. In her mind, the things she wants to change or fix is now a very short list.

I need to stand back once in a while and view how I react to our conversations. My tasks for now are to listen, to help her remember old times and not judge. I have the easy list because I was the free spirit and mom couldn't always count on me to do everything she expected of me.

Here is my conversation with Chuck from earlier today:


Chuck: Nice read.  I think she is lonely. I've been helping my mother since dad died and have noticed the profound impact it has on her.  I replaced some of the man-in-the-house stuff. Today she drove me mad in the morning wanting to go here and go there. I kindly motivated her to hop in her new car and go to K mart without me. I want her to be more independent, because one day I’m gonna be away again, in my own space.

Me: Yes, you are right, she is lonely, but maybe she brings some of it on herself. Hazel, that is. She wants to be with Liz as a companion and Dennis to do the errands and to take care of her.  It is so nice that you take care of your mom and help her keep up some level of independence. Life is hard being old. We children are lucky to have parents who live so long, but we also have to face some difficult decisions. Do you think I was being a brat about her insisting on talking about the same issues, over and over? I guess I was. Maybe it is due to the mother/daughter relationship that we have. This is very interesting, Chuck. I would like to get your impression of this latest post. Can I use your response and this convo for another post? I do need a sounding board for some of the posts I write.

Chuck: You are normal. It is how we deal. I loved it.

Me: How do you know all of this? As a young child, I would've been the first to bolt from the room, when she started acting like this. I mean I really see some of this as the roles we always played. At least now and from this distance, I can be patient, let her have her say and then complain and make faces after we hang up. Dennis and Liz are stuck in their same roles and they can't change that. In your work, do you deal with people who have dementia?

Chuck: I have two friends who recently lost their mothers to dementia and I just listen to them a lot and I try to learn and understand what they have to go through, the things they have to do and how they get to a certain barrier that helps them cope and get through it. You're doing fine you're communicating with her you're doing a very loving thing

Chuck: Everything you do is positive and stimulates her mind it's very important what you're doing. What Dennis is doing is very very important. You're doing a wonderful job I know it is painful and sad but you're doing wonderful

Chuck: You are going to achieve closure in all of this because of this loving work
Chat Conversation End

Sent from Olean, NY

I am so grateful for Chuck's response he was a tad generous with his compliments. that's always welcomed. And I appreciate the notes I get from others about my blog and mom. Please keep passing along your thoughts and ideas. Thanks again for reading.

Sunday, April 19, 2015

Circular conversation

This post is part of a log of phone conversations between me and my mother who has dementia. We are reminiscing and catching up. Mom is 91 and moved from the family farmhouse to a sort of assisted living apartment in upstate New York. I live in Florida. We have not had much contact for several years until I started calling her every few days, in August. My goal is to reconnect with her, be someone who will listen to her and share memories. These posts include parts of our conversations I feel important to write about such as events and things she wants to discuss from her life, her family and growing old. She so enjoys our phone calls. Her memory comes and goes. It seems like she has more alert days since I started calling, but that may be my wishful thinking. I am learning a lot about her status in life and how it's changed over the years from being the strong maternal figure to an elderly person who at times feels forgotten as well as forgetful.

These days, talking with mom is more like a lesson in patience. The poor gal is so wound up with herself, her plight of loneliness and the blame she places on others, it has become her only topic. I do spend time trying to get her off that hamster wheel, by bringing up old times. She laughs, adds her two cents and then goes back to the wheel. The past few times we spoke, I let her go on, hoping she would finally run out of steam. Doesn't happen and I think it is because she doesn't have anyone for venting. She even said yesterday, something to that effect. I forgot to note exactly what she said because I wasn't really listening.

The gripes: no friends, family doesn't care about her, no friends, her family doesn't care about her, no friends, her family doesn't care about her, no friends and her family doesn't care about her. Did you get all of that?

There are other complaints, but the above mentioned are the biggies. 

Even though it was 70 with sunshine Saturday, she is still carrying on about not being invited to spend LAST winter in a warmer climate with my sister Liz or brother Jim. And, she's already starting in about suffering again next winter. I remind her it is April and her favorite spring and summer months are around the corner. 

"Yes," she agrees and moves on to list what she looks forward to, like the weekly concerts held in the park across the street from her apartment. "That starts in the summer. I don't have a chair, but I will just go over and sit on the ground. Someone took all of my chairs." She's talking about folding chairs that are part of a card table set. Then she goes on speculating over who took them. I tell her she can't carry a heavy folding chair to the park and she says she will have Dennis get another chair for her.Poor Dennis has become her 24-hour go-to guy for whatever she thinks she needs.

"I won't have anyone to go with me, but that's okay." That's when I asked about her friend Velma. I talked to Dennis and Vicki before calling mom and they said she'd gone out to eat on Friday with Velma. so, I asked if she'd seen or heard from her lately. "No," she replied. "She's still mad at me."

So they went out to dinner on Friday evening and on Saturday afternoon, mom's forgotten.

We get back to the GOOD stuff that will be happening when it warms up. 

* She likes watching the kids play sports on the fields behind her complex,  
* Counting cars and traffic watching are better than TV.
* She will take more walks around the small downtown.

Oh yes and she wants to go live with Dennis, part of the time, anyway. She's is worried about her options drying up. she's afraid "they" will put her in one of those places where someone will feed her like a baby. I told her to make sure she is doing two things: eating right and taking her medicines. "Oh, I do that," she said. 

It is a mental workout on calls like this, but I concede she has a lot of time with nothing else to do. I am her sounding board. So, I listen and get a thought or two, when I get a chance.

We did get a good laugh over something she made me think of. One time my dad's brother August called around nine at night. He said he heard on the news there were tornado warnings in our area and said everyone should sleep downstairs, to be safe. I was eight or nine, so that meant mom, dad, me, my brother Dick, Jim, maybe Liz if she was born by then, my grandparents and my aunt Theresa all bundled up in chairs and on couches. 

Mom remembered that and what a horrible night it turned out to be, just waiting for something bad to happen. I told her I expected to pull back a curtain that was hanging at the staircase entry and seeing the sky, that everything would be gone. She laughed and said she'd had similar thoughts. 

That next day, mom wasn't happy with my uncle for his inaccurate prediction.

Oh and she said the curtain was hanging there to keep heat from going upstairs. They (my grandparents whose bedroom was downstairs) said they (those who slept upstairs) didn't need heat to sleep.

That's it for this post.

"I love you, mom."

"I love you too, dear."

Thinking back to this week in April long ago.

Here is a post I wrote for Antsy Artist Redux about this week and it's importance to me. My dad would've been 94 on April 21st. We weren't always very close, but I do have these thoughts. This is my remembrance of my daughter, her grandpa, his birthday, Earth Day and Save the Whales. Please read on.

Today's post on Antsy Artist Redux

Sunday, April 12, 2015

It's the dementia or not

This post is part of a log of phone conversations between me and my mother who has dementia. We are reminiscing and catching up. Mom is 91 and moved from the family farmhouse to a sort of assisted living apartment in upstate New York. I live in Florida. We have not had much contact for several years until I started calling her every few days, in August. My goal is to reconnect with her, be someone who will listen to her and share memories. These posts include parts of our conversations I feel important to write about such as events and things she wants to discuss from her life, her family and growing old. She so enjoys our phone calls. Her memory comes and goes. It seems like she has more alert days since I started calling, but that may be my wishful thinking. I am learning a lot about her status in life and how it's changed over the years from being the strong maternal figure to an elderly person who at times feels forgotten as well as forgetful.

I am so confounded by old age and dementia, these days. For months mom was depressed, despondent, lonely and sad. All she wanted was a Winter down south where there wouldn't be snow and ice. Where she could walk her dog without it getting frost-bitten feet. Since last fall as the leaves were falling, she's pined for an invite from my sister, Liz as well as my brother Jim. There are reasons she didn't get invited back, the biggest one is that it is problematic getting her and her dog there and home again.

I kept bolstering her spirits all winter by reminding her that she is a warm-weather person and she would be happy once again, in the Spring. We talked about the concerts in the park across the street from her apartment. About the families gathering to watch their kids playing sports on the athletic fields behind her complex, walking her dog around town and car watching. She would lighten up for a while and then go back to the same conversation. She got to the point where she didn't even like her apartment, anymore.

Finally, it is warmer and she's made a few decisions. Unfortunately, what she wants turns out not to be in her best interest. And there is more going on in her life besides her winter woes. 
This week mom is bubbling with enthusiasm. She'd heard that Dennis and Vicki may be moving into the farmhouse and maybe she would be able to stay with them. She embraced that idea, immediately, but soon came up with her own alternative. She thought is would be better for her to keep her apartment, now that those concerts in the park are just around the corner. The best of both worlds.

Sounded great to me, until I got another side of the story. The real problem is she is becoming less able to care for herself. The apartment situation was perfect for a while. Now, with no one to watch over her, she is forgetting to take pills and isn't eating right. She gave a way her pots and pans. Dennis and Vicki check on her daily, sometimes twice a day. They've talked to her about these problems and explained that her living alone in an apartment may no longer be viable. Mom is getting to the point where she needs additional care.

This was a rather serious conversation they had with her on Friday afternoon. But, when I talked to mom on Friday evening she was very excited about (her plan) to go back and forth between her place and the farm, with no mention of the conversation she had with Dennis and Vicki a few hours before.

It is coming down to mom needing structured care, like a nursing home. But she is "with it" enough to fight it. Problem is she is coming up with alternatives that are no longer workable. I've heard the arguments. It is a very sad time, not just for her, but for my siblings that have been dealing with her care. 

It is becoming difficult to know what is real and what is dementia talk, in our conversations. Oh, I can tell when she talks about our family life as being probably the best ever in the world, and I know better, I let her go on. But things she says about what is happening in her day-to day life -- I just don't know.

We did have plenty of laughs talking about things like the time the bat got into the house and was flying from bedroom to bedroom with dad chasing it in his underwear. Or when the Sears truck delivered a tub, toilet and sink, that mom bought because she was sick of having the only house around without an indoor bathroom. I will get back to sharing those conversations here. I needed to get this other stuff out.

Saturday, April 4, 2015

Which Chuck is it?

This post is part of a log of phone conversations between me and my mother who has dementia. We are reminiscing and catching up. Mom is 91 and moved from the family farmhouse to a sort of assisted living apartment in upstate New York. I live in Florida. We have not had much contact for several years until I started calling her every few days, in August of 2014. My goal is to reconnect with her, be someone who will listen to her and share memories. These posts include parts of our conversations I feel important to write about such as events and things she wants to discuss from her life, her family and growing old. She so enjoys our phone calls. Her memory comes and goes. It seems like she has more alert days since I started calling, but that may be my wishful thinking. I am learning a lot about her status in life and how it's changed over the years from being the strong maternal figure to an elderly person who at times feels forgotten as well as forgetful.

First, I want to note that I've talked to mom twice since my last post, but didn't have much new to write about. She is preoccupied with her situation of living alone and feeling cooped up. She  says she's lonely, despondent, feeling neglected and basically, not happy. We both know her mood is due to the weather. Mom is a spring, summer, fall person. She got along better in the winter when she was younger, could drive and get around more. Now, after falling on the ice several weeks ago, she hardly gets out and has caught a major case of cabin fever.

She's been calling my brother Dennis and his wife, Vicki, everyday looking for company and someone to take her out to eat. If they aren't near the phone to answer she leaves a voice mail, or several begging for a return call. She gets panicky, says she needs them to come to her place for this or that. She knows he is home during the day and forgets he also works at night. They are patient with her. They call her to calm her down. They go out with her to eat. The next day it starts all over.

Vicki told me about this and mom brought it up when I called her on Friday. She even told me she forgot they had just gone out to eat. And forgetting was putting her into another panic. With dementia, there seems to be no end to the misery.

But, that's not what I want to write about, this beautiful day before Easter. We had a fun conversation about Chucks.

We were talking about past Easter baskets, candy, ham dinner, straw hats and flowers. It was a good topic to get her mind off of the current weather and onto Spring, which already happened according to the calendar, but not by Mother Nature. Mom loves white Easter lilies and red azaleas. They were everywhere during the Easter season. My dad's sister, Ella had a flower shop and those were the most popular plants to send friends and family for Easter. She always made sure our house was bedecked with lilies and azaleas for the holiday.

Straw hats and new dresses for church were all a part of Easter. Of course the new outfits were church apparel. To me, the hat was a waste since I would never wear it again.

Jelly beans, chocolate and decorated eggs filled baskets. Potatoes, carrots and ham filled our bellies.

I got a little off topic when I told mom about a recent FB conversation I had with a friend, Chuck Meyers. I said he always loved being around our house on holidays because there was so much fun going on. For a minute, she wasn't sure who I meant. She started talking about another family friend named Chuck from long ago,  "Oh, you mean Chuck Dean," mom said. No. I replied, but that name is familiar.

This Chuck was Dennis and Vicki's friend. "Oh, Chuckie," mom said. "Where is he now? I don't think I've seen him in a long time." He still lives in your area. "What is his last name again? I am writing that down and I will ask Denny where he is now. Is it Chuckie? Meyers?"

Getting that straightened out, she went back to remembering the other Chuck. I brought up a couple of times I remembered about that Chuck who was dad's good friend. They went coon hunting together. Dad had a LOT of coon hunting friends.

BTW mom said she went hunting with dad a few times and really enjoyed it. "Leslie (dad) was something when it came to hunting. He would say 'Listen. Do you hear that?' I could hear the dog running in the woods. 'She's (the dog) on the trail now.' It was too dark to see anything, but he knew exactly where the dog and the raccoon were.

"Oh, I know, it was Kinney. Chuck Kinney. His father was Reverend Kinney."

I told her one of my first memories was of me getting myself into trouble, without realizing what I had done. I related something I heard my dad say regarding Chuck and his wife were secretly living in their beauty shop that caught on fire. I was telling all of this to Chuck's father the reverend, as dad, mom, Chuck  and others sat in our living room. Dad was standing behind the reverend, furiously shaking his head and mouthing the word NO over and over. There was more to the story than I'll relate here. ... After they left, my older brother Dick warned of what I'd just done and told me to prepare for a spanking. I ran and hid in my closet for about two hours until mom coaxed me out for supper. No spanking, but I learned not to repeat stuff the adults said. And I never found out what happened between Chuck and the Reverend after they left.

Mom chuckled at this story. "Chuck was a nice guy. He was kind and a great friend. He could get himself into some real messes. I wonder if it had to do with growing as a preacher's son. Maybe it was too hard trying to be perfect."

I asked again about Chuck Dean. Mom said she'd have to do more thinking and remembering. For now, she is focusing in on Chuck Meyers and his whereabouts.

Promised to call again on Easter. "I will be in church," mom said. "Call me that night. Then we can have another nice visit. I love our talks."  Me too.

"I love you, mom."

"I love you too, dear."