This post...you may wonder what possessed me to write it in my Alzheimer's blog. It IS related.
My sister-in-law heard a radio spot promoting the July 6 Barry Manilow concert at Mellon Arena in Pittsburgh and called my brother. "That has my sister's name written all over it," he said. Then he came to see me.
"I want to give you a birthday present."
I was a little suspicious about the way he said it. "What kind of birthday present?"
"Tickets to the Barry Manilow concert at Mellon Arena on July 6."
"I don't know my way around Pittsburgh. I'll get lost!"
"I'll set you up with my GPS. It'll take you right to the place."
So, I checked with my husband. He likes some of Barry's music, but I wouldn't call him a fan. He agreed to go with me. My brother said, "You'll have Cathy alone for a while." Alone with how many other fans filling that place???
The point is, my brother and his wife have noted that I am with Mom around the clock. I finally gave up sleeping on the sofa and moved upstairs to the extra bedroom so I'm getting a restful sleep.
"You don't do much. You are always here. You need to get away. This is perfect for you." He handed me cash. "For parking. And you have to buy a t-shirt. You have to. That's a requirement at a concert."
I have NEVER gone to a concert. I am so overwhelmed with emotion that my brother and sister-in-law are doing this for me. I know I chose to take care of our mom. I'm the only one who doesn't have a full time job or a sickly spouse to take care of, so it's just logical to me that I be here. Having my wings clipped, though, limiting my activities when I've just graduated from college, is a big adjustment for me. You know, it took me 28 years to get that degree. I'd like to do something with all of that knowledge!
The ONLY thing that could make this event better is if Barry himself said, "Come on down out of that balcony and sit here in front." And if he sang "Time in New England" or "When October Goes" or "Magic." I've GOT to stop at my house and pick up my Manilow CDs. Dad may be gone, but his CD player is right beside me when I am working on my computer. Only thing is, when that music is playing I'm singing along and on my feet movin'!
The concert is still a couple of weeks away, but the anticipation of it has re-energized me. I've spent a lot of the day working on the sequel to my first novel that is in the hands of a publisher as I write these words, going through the readers. Then, I did something I haven't done in, well, I can't tell you how long because it's BEEN so long! I baked chocolate chip cookies! Mom's nose led her to me and the kitchen. LOL. She really liked the aroma wafting through the house and I noticed the twinkle in her eye that I haven't noticed much lately. I know she's leaving us a bit at a time, but there are still moments that reach out and wrap themselves around us and she knows. When will I ever stop the tears flowing when I think of these moments I have to write down before they are forgotten and later I will pull out the journal or the stories and read them and remember the moments for both of us.
Emotions. They run rampant with me. I'm a writer, a creative mind who long ago said to God, "I want to feel the full extent of all the emotions so I will understand and be able to write the things that will touch hearts and minds and let them know they are not alone.
So I'm sitting here crying small tears about my mom and the way she tries to keep using her brain. And she comes around the corner with some money folded in her hand.
"Cathy, I want you to take this and use it toward your schooling."
"Mom, I'm finished with school."
"I thought you said you were going to go some more."
"In a year."
"Then you tuck that away and use it when you go. If I can give you more I will. I just don't have a lot to give you."
And I thought of the woman in the New Testament. She threw her pennies into the collection basket and was criticized because it was so little. But Jesus said she was blessed because she gave all that she had.
Mom has given all that she has for the family she has loved all of her life, even when she wasn't sure she was loved back. She still has given her all. And that is why I am staying here. That's why I look after her. That's why I won't give up on her. I have her back. Lord God, I have her back. And you have both of us in the palm of your hand.
And I'm bawling my eyes out. Mom, too.
(c)2009 Cathy Thomas Brownfield
Monday, June 22, 2009
Tuesday, June 16, 2009
Home away from home
We've started to look at nursing homes. And it feels like betrayal. In understand this is common for family members who face this hurdle in the Alzheimer's game. I am remembering something Hazel Burnip told me a LONG time ago. She said to find out about things I'm going to need to know before we arrive at an emotional crisis point when we can't think clearly because of the immediate stress we are coping with. At the time we were in the midst of the Economic Malaise, circa 1980. My family was one that "fell through the cracks" of the federal government system. The advice is still good today.
We went to the Alzheimer’s facility about fifteen miles from home. We visited unannounced. Surprise inspection.
• Away from the main road.
• Pleasant surroundings.
• Doors kept locked.
• Peaceful throughout the building.
• No lingering unpleasant odors.
• Residents seem content.
• Two people to a room.
• Hair salon
• Caring staff, by all appearances.
• Facility like a hospital…sorta.
• Missing: home and family.
• Issue: Distance from family and home.
We drove into town to check out the retirement community. I had heard good things about it.
• Beautiful surroundings.
• Beautiful rooms, one resident to a room.
• Homey, family atmosphere.
• Beauty salon.
• Small store for essentials like shampoo and toilet paper.
• Residents bring their own belongings/furnishings and personalize their rooms.
• I could stay with her for a few days while she settled in.
• Friendly staff.
• Missing: doors are not locked. I fear they are not equipped to handle advanced Alzheimer’s.
The facility is beautiful and I think Mom would like it there, but with advanced Alzheimer’s we don’t want to get her settled in somewhere just to yank her out and move her somewhere else. We have other places to check out. Personally, I want to buy the nursing facility in our town that is moving to new digs in another community. I’d like to make it an Alzheimer’s facility, one person to a room where desired, roommates when desired. Homelike atmosphere, one wing at a time. It had strong roots but has fallen into disrepair. It’s close to home. And there is only one other place in our town.
Last night we talked awhile, my sister-in-law Dawn, my daughter Christie and me. Dawn said we have to think about Mom’s safety. Can’t argue with that. But it still feels like I’m betraying the woman who sacrificed for all of us forever. She made sure we had even if it meant she went without. “That’s what Mom is supposed to do,” she said. Richard may remember some of the things that happened, but he was so young. I know he doesn’t remember a lot. Some happened before he was born. Our mother…she was a warm, smart, intelligent, compassionate, generous, strong woman. When we play the Alzheimer’s Peek-a-Boo game, she still is. Those moments are fewer these days.
Mom said to me, not too many days after her Alzheimer’s diagnosis, “The day will come when you will have to put me in a nursing home. Do it. I will probably argue with you. But I trust you to do the right thing. And when I don’t know you any more, stop coming to visit. I will be gone. All that will be there is an empty shell.”
As if…
As if I could not go and sit and hold her hand and remember all that she was “in the days.”
As if I could leave her alone in a silent world, isolated from everyone and everything.
I say these last words facing the unknown of the Alzheimer’s progression. For, although all AD patients share some symptoms, each case also is individual.
In my heart I keep thinking about causes. Why did this happen to my mother? I pray to God it wasn’t created in a laboratory somewhere to be exploited by pharmaceutical companies for profits.
Remember on the X-files, the woman who said (just before she disappeared), “No matter how paranoid you think you are, you probably aren’t paranoid enough.”
(c)2009 Cathy Thomas Brownfield ~ All Rights Reserved
We went to the Alzheimer’s facility about fifteen miles from home. We visited unannounced. Surprise inspection.
• Away from the main road.
• Pleasant surroundings.
• Doors kept locked.
• Peaceful throughout the building.
• No lingering unpleasant odors.
• Residents seem content.
• Two people to a room.
• Hair salon
• Caring staff, by all appearances.
• Facility like a hospital…sorta.
• Missing: home and family.
• Issue: Distance from family and home.
We drove into town to check out the retirement community. I had heard good things about it.
• Beautiful surroundings.
• Beautiful rooms, one resident to a room.
• Homey, family atmosphere.
• Beauty salon.
• Small store for essentials like shampoo and toilet paper.
• Residents bring their own belongings/furnishings and personalize their rooms.
• I could stay with her for a few days while she settled in.
• Friendly staff.
• Missing: doors are not locked. I fear they are not equipped to handle advanced Alzheimer’s.
The facility is beautiful and I think Mom would like it there, but with advanced Alzheimer’s we don’t want to get her settled in somewhere just to yank her out and move her somewhere else. We have other places to check out. Personally, I want to buy the nursing facility in our town that is moving to new digs in another community. I’d like to make it an Alzheimer’s facility, one person to a room where desired, roommates when desired. Homelike atmosphere, one wing at a time. It had strong roots but has fallen into disrepair. It’s close to home. And there is only one other place in our town.
Last night we talked awhile, my sister-in-law Dawn, my daughter Christie and me. Dawn said we have to think about Mom’s safety. Can’t argue with that. But it still feels like I’m betraying the woman who sacrificed for all of us forever. She made sure we had even if it meant she went without. “That’s what Mom is supposed to do,” she said. Richard may remember some of the things that happened, but he was so young. I know he doesn’t remember a lot. Some happened before he was born. Our mother…she was a warm, smart, intelligent, compassionate, generous, strong woman. When we play the Alzheimer’s Peek-a-Boo game, she still is. Those moments are fewer these days.
Mom said to me, not too many days after her Alzheimer’s diagnosis, “The day will come when you will have to put me in a nursing home. Do it. I will probably argue with you. But I trust you to do the right thing. And when I don’t know you any more, stop coming to visit. I will be gone. All that will be there is an empty shell.”
As if…
As if I could not go and sit and hold her hand and remember all that she was “in the days.”
As if I could leave her alone in a silent world, isolated from everyone and everything.
I say these last words facing the unknown of the Alzheimer’s progression. For, although all AD patients share some symptoms, each case also is individual.
In my heart I keep thinking about causes. Why did this happen to my mother? I pray to God it wasn’t created in a laboratory somewhere to be exploited by pharmaceutical companies for profits.
Remember on the X-files, the woman who said (just before she disappeared), “No matter how paranoid you think you are, you probably aren’t paranoid enough.”
(c)2009 Cathy Thomas Brownfield ~ All Rights Reserved
Wednesday, June 10, 2009
Nobody said life would be easy. In fact, Mom said it was not easy. But she expected us to do the best we knew how. To be responsible and reliable, dependable. To be honorable.
I ponder the lessons of my growing up years, all the things Mom taught her children. She had high standards for us, and we tried so earnestly to work our ways through those youthful years of peer pressure (two wrongs don’t make a right and if those kids all jumped off Canton Bridge, would you jump, too?), bullying (that boy who tormented me 50,000 times a day in the corridors of David Anderson High School), and the problems at home (why did Dad do some of the things he did that caused extra issues?)
Mom insisted, “He’s your father. You will respect him because without him you would never have been born.”
Yes, Mom held us up to high standards.
I remember the day she said to me, “The time is going to come when you will have to put me in a nursing home. I know I am going to fight you about it, but you have to do what you have to do. I expect you to do what you know is right. When I need to go to a nursing home, do it. And when I don’t know you any more, don’t come to visit me because I won’t be there. I will be gone. There will be only a shell there in my place. I trust you to do the right thing.” She had just been diagnosed with Alzheimer’s at that time.
I promised that I would always do the best I knew how to see to her best interests. And look at where we are now.
On Monday I said, “Mom, you wanted me to remind you to take a shower this morning.” She complied and I thought I had won that silent battle. However, when she came out of the bathroom, fully showered, she said, “It’s funny how I lived all of my life without you around to tell me when to take a shower.” Things escalated from there. I knew how long it had been since she had showered. But she would have none of that. I was a liar, she said, and had no business telling her what to do. Well, at least she had taken the shower and shampooed her hair.
On Tuesday she came to me. “Where is my checkbook?”
“Why?”
“I have bills to pay.”
“Your bills are all paid.”
“I want my checkbook.”
“Sorry, no.”
“It’s my checkbook.”
“Yes.”
“It has my name on it.”
“Yes. And Richard’s and mine.”
“You are living in my house.”
“I am staying at your house so you can stay in your home. But if you want me to leave, that’s fine. Here are your options: me, Bill, Richard or a nursing home.”
“I’m not going to a nursing home.”
“The time is going to come when you can’t make that decision.”
“I want my checkbook.”
“When Richard gets home we will talk to him. If he says to give you the checkbook I will give you the checkbook.”
“If you don’t give me my checkbook I’ll tell Richard.”
“OK.”
Not even two hours before this Day 2 battle (two days in a row) she had called to me, “Does my crocheting bother you?”
“No.”
“Bill didn’t like it because I crocheted.”
I ventured to the living room and sat down to talk. “He’s gone and you can crochet all you want to. Does it bother you that I spend so much time with my computer? Fred thinks I’m having an affair with my computer.”
“You can play with your computer as much as you want to.”
Her eyes twinkled. She was smiling and content. Well, maybe we were past the battles for the time being. Uh, now I see that twinkle and smile and contentedness and think, “She’s looking for something to fight about.”
She says, “I am so bored. I would like to do something exciting.” But she doesn’t know what she would like to do. When she said she wanted to go to see her brother, I took her. When my grandson has a ballgame, I take her. When my children and grandchildren have a cookout or family event, I take her. If she wants ice cream we go to the Dairy Queen or McDonald’s drive-thru. I took her to the community choir’s spring concert. By the time we get back home she has forgotten that we even went. I still take her, even though I know she will remember it less than a minute. At the concert she insisted that they had forgotten to sing two songs on the program.
“No, Mom. They did sing them.”
“I don’t remember.”
The time is come that my brothers and I have to keep the promise that I made to her that long-ago day. I can scarcely handle the idea. I cry every time I think about it. My grandmother took care of her mother in her home until the day she died at age 86. My mother took care of my grandmother in her home until the day she died at age 84. Shouldn’t I be taking care of my mother in my home until the day she dies? As far as I know, my great-grandmother never showed any violent tendencies. I was 10 when she died. I remember the day. My grandmother was docile as her days dwindled. She didn’t linger long because she didn’t want to be a burden to her family. I remember the day she passed.
But Mom is over-the-top angry in an instant. The episode on Tuesday—I had my back to her and remember thinking I probably should face her. She used to pummel my dad when he took her in the car until he told her, “If you don’t behave I will take you back home and I won’t take you in the car again.” My husband was with us, so I wasn’t as concerned as I might have been had it been just the two of us.
No, I am not equipped to handle my mother’s care much longer. And so we, my brothers and I, are looking at facilities in our area to place her. I know it has to be done. Why do I feel like a traitor?
© 2009 Cathy Brownfield ~ All rights reserved.
I ponder the lessons of my growing up years, all the things Mom taught her children. She had high standards for us, and we tried so earnestly to work our ways through those youthful years of peer pressure (two wrongs don’t make a right and if those kids all jumped off Canton Bridge, would you jump, too?), bullying (that boy who tormented me 50,000 times a day in the corridors of David Anderson High School), and the problems at home (why did Dad do some of the things he did that caused extra issues?)
Mom insisted, “He’s your father. You will respect him because without him you would never have been born.”
Yes, Mom held us up to high standards.
I remember the day she said to me, “The time is going to come when you will have to put me in a nursing home. I know I am going to fight you about it, but you have to do what you have to do. I expect you to do what you know is right. When I need to go to a nursing home, do it. And when I don’t know you any more, don’t come to visit me because I won’t be there. I will be gone. There will be only a shell there in my place. I trust you to do the right thing.” She had just been diagnosed with Alzheimer’s at that time.
I promised that I would always do the best I knew how to see to her best interests. And look at where we are now.
On Monday I said, “Mom, you wanted me to remind you to take a shower this morning.” She complied and I thought I had won that silent battle. However, when she came out of the bathroom, fully showered, she said, “It’s funny how I lived all of my life without you around to tell me when to take a shower.” Things escalated from there. I knew how long it had been since she had showered. But she would have none of that. I was a liar, she said, and had no business telling her what to do. Well, at least she had taken the shower and shampooed her hair.
On Tuesday she came to me. “Where is my checkbook?”
“Why?”
“I have bills to pay.”
“Your bills are all paid.”
“I want my checkbook.”
“Sorry, no.”
“It’s my checkbook.”
“Yes.”
“It has my name on it.”
“Yes. And Richard’s and mine.”
“You are living in my house.”
“I am staying at your house so you can stay in your home. But if you want me to leave, that’s fine. Here are your options: me, Bill, Richard or a nursing home.”
“I’m not going to a nursing home.”
“The time is going to come when you can’t make that decision.”
“I want my checkbook.”
“When Richard gets home we will talk to him. If he says to give you the checkbook I will give you the checkbook.”
“If you don’t give me my checkbook I’ll tell Richard.”
“OK.”
Not even two hours before this Day 2 battle (two days in a row) she had called to me, “Does my crocheting bother you?”
“No.”
“Bill didn’t like it because I crocheted.”
I ventured to the living room and sat down to talk. “He’s gone and you can crochet all you want to. Does it bother you that I spend so much time with my computer? Fred thinks I’m having an affair with my computer.”
“You can play with your computer as much as you want to.”
Her eyes twinkled. She was smiling and content. Well, maybe we were past the battles for the time being. Uh, now I see that twinkle and smile and contentedness and think, “She’s looking for something to fight about.”
She says, “I am so bored. I would like to do something exciting.” But she doesn’t know what she would like to do. When she said she wanted to go to see her brother, I took her. When my grandson has a ballgame, I take her. When my children and grandchildren have a cookout or family event, I take her. If she wants ice cream we go to the Dairy Queen or McDonald’s drive-thru. I took her to the community choir’s spring concert. By the time we get back home she has forgotten that we even went. I still take her, even though I know she will remember it less than a minute. At the concert she insisted that they had forgotten to sing two songs on the program.
“No, Mom. They did sing them.”
“I don’t remember.”
The time is come that my brothers and I have to keep the promise that I made to her that long-ago day. I can scarcely handle the idea. I cry every time I think about it. My grandmother took care of her mother in her home until the day she died at age 86. My mother took care of my grandmother in her home until the day she died at age 84. Shouldn’t I be taking care of my mother in my home until the day she dies? As far as I know, my great-grandmother never showed any violent tendencies. I was 10 when she died. I remember the day. My grandmother was docile as her days dwindled. She didn’t linger long because she didn’t want to be a burden to her family. I remember the day she passed.
But Mom is over-the-top angry in an instant. The episode on Tuesday—I had my back to her and remember thinking I probably should face her. She used to pummel my dad when he took her in the car until he told her, “If you don’t behave I will take you back home and I won’t take you in the car again.” My husband was with us, so I wasn’t as concerned as I might have been had it been just the two of us.
No, I am not equipped to handle my mother’s care much longer. And so we, my brothers and I, are looking at facilities in our area to place her. I know it has to be done. Why do I feel like a traitor?
© 2009 Cathy Brownfield ~ All rights reserved.
Wednesday, May 27, 2009
Don't wanna be a tattle tale
I've found it difficult to write this blog. It feels like a violation of privacy. Alzheimer's is such a private disease, even as it exists in the public domain. Things have changed, there has been progression. I must vent somewhere, not just to reach others who struggle with the disease, either as the one who has the condition or as a caregiver, but for myself.
How did we arrive at this moment in time?
Many times, when I walked through the door, Mom sat at her end of the sofa with her crochet hook in hand and Dad sat in his recliner grumbling because all she did was sit there and crochet. He would look up, see me coming into the house, and an expression of relief crossed his face as if he were thinking, "The cavalry has arrived!" (Is that what my brothers see on my face when they walk through the door?) Dad and I always ended up at the kitchen table, talking over tea. He always made sure there were teabags for me because I'm not a coffee-drinker. At some point he began to drink tea, too.
I think he tried to manipulate me some. So I determined early on to be an encourager to him, but honest with him. The crocheting complaint: "Do you want her brain to die? The crocheting and the Game Boy and the newspaper puzzles are what keep her brain alive. Do you WANT her brain to die? Then leave her alone. Let her crochet! Let her play her games!" I have noted the progression of the AD by the level of difficulty of the patterns she uses. At least she can still hold a crochet hook and make those blocks for a bedcover even if she can't figure out how to join them together. I will do that. We will call it one of our partnership projects. We've had a lot of those over the years before she needed any help from anyone.
"I don't think I can do this," he often said, though the rest of the family believed it was his penance (he was Catholic, the rest of us are not)for all of the times that he let her down.
"She stood beside you through a lot, Dad. When it would have been in her best interests to go, she stayed. You owe it to her to stand by her now. It's not like she chose to have Alzheimer's."
He would grumble. I would listen. And I would ask questions to get him started talking about local history, his family, funny things from his childhood. I didn't ask nearly enough questions or learn nearly enough about his family. We didn't get to spend that much time with those discussions. But for a brief time the stress was lifted and he relaxed, and was perhaps re-energized to go at it all again. At least he was at home.
We spoke often about what would happen to Mom when he wasn't here to take care of her any more. There was no way she could live alone. I kept telling him he had to stay, he had to keep living because I wasn't ready to let go. And there were moments when I told myself to make the most of my freedom because it was just a matter of time when it would be gone.
That sounds like a terrible thing to say. Dad didn't think I understood what it was like, what he was living. He didn't realize that he was getting a taste of what Mom and legions of women through the ages had lived. I know what it's like to be limited where you can go and what you can do when you have children, a family to take care of. I knew I would be passed the caregiver torch, so I didn't fight it. I embraced it, even as I was thinking, "I'm not getting any younger. In 15 or 20 years, will I be my mother?" There isn't much consolation in the 50s being the new 40s. I am terrified of being the next generation Alzheimer's patient.
Dad passed away in mid-March. It is nearly June. I have stayed here most of the time since Dad's last hospital admission, sleeping on the sofa. I sleep on the sofa at Mom's house for a couple of reasons: 1.) To sleep in the little bedroom would mean I have moved into my mother's house. I have my own home, a husband, a yellow lab, a tabby cat, flowers to plant, walls to paper, woodwork to paint. I must remember all the reasons I have for being there. That's where my permanent life is. I sleep on the sofa at Mom's house because 2.) If Mom begins to wander--which she did a little when Dad died--I will hear her before she can wander far. This is my temporary life.
My daughters have said to me that their dad could/should treat me better, that he doesn't appreciate what he has, what he could lose if he doesn't take care of me. So this time of temporary life in my mother's house is also a time of reflection about the things that are most important in a life, to a life.
(c)2009 Cathy Thomas Brownfield
How did we arrive at this moment in time?
Many times, when I walked through the door, Mom sat at her end of the sofa with her crochet hook in hand and Dad sat in his recliner grumbling because all she did was sit there and crochet. He would look up, see me coming into the house, and an expression of relief crossed his face as if he were thinking, "The cavalry has arrived!" (Is that what my brothers see on my face when they walk through the door?) Dad and I always ended up at the kitchen table, talking over tea. He always made sure there were teabags for me because I'm not a coffee-drinker. At some point he began to drink tea, too.
I think he tried to manipulate me some. So I determined early on to be an encourager to him, but honest with him. The crocheting complaint: "Do you want her brain to die? The crocheting and the Game Boy and the newspaper puzzles are what keep her brain alive. Do you WANT her brain to die? Then leave her alone. Let her crochet! Let her play her games!" I have noted the progression of the AD by the level of difficulty of the patterns she uses. At least she can still hold a crochet hook and make those blocks for a bedcover even if she can't figure out how to join them together. I will do that. We will call it one of our partnership projects. We've had a lot of those over the years before she needed any help from anyone.
"I don't think I can do this," he often said, though the rest of the family believed it was his penance (he was Catholic, the rest of us are not)for all of the times that he let her down.
"She stood beside you through a lot, Dad. When it would have been in her best interests to go, she stayed. You owe it to her to stand by her now. It's not like she chose to have Alzheimer's."
He would grumble. I would listen. And I would ask questions to get him started talking about local history, his family, funny things from his childhood. I didn't ask nearly enough questions or learn nearly enough about his family. We didn't get to spend that much time with those discussions. But for a brief time the stress was lifted and he relaxed, and was perhaps re-energized to go at it all again. At least he was at home.
We spoke often about what would happen to Mom when he wasn't here to take care of her any more. There was no way she could live alone. I kept telling him he had to stay, he had to keep living because I wasn't ready to let go. And there were moments when I told myself to make the most of my freedom because it was just a matter of time when it would be gone.
That sounds like a terrible thing to say. Dad didn't think I understood what it was like, what he was living. He didn't realize that he was getting a taste of what Mom and legions of women through the ages had lived. I know what it's like to be limited where you can go and what you can do when you have children, a family to take care of. I knew I would be passed the caregiver torch, so I didn't fight it. I embraced it, even as I was thinking, "I'm not getting any younger. In 15 or 20 years, will I be my mother?" There isn't much consolation in the 50s being the new 40s. I am terrified of being the next generation Alzheimer's patient.
Dad passed away in mid-March. It is nearly June. I have stayed here most of the time since Dad's last hospital admission, sleeping on the sofa. I sleep on the sofa at Mom's house for a couple of reasons: 1.) To sleep in the little bedroom would mean I have moved into my mother's house. I have my own home, a husband, a yellow lab, a tabby cat, flowers to plant, walls to paper, woodwork to paint. I must remember all the reasons I have for being there. That's where my permanent life is. I sleep on the sofa at Mom's house because 2.) If Mom begins to wander--which she did a little when Dad died--I will hear her before she can wander far. This is my temporary life.
My daughters have said to me that their dad could/should treat me better, that he doesn't appreciate what he has, what he could lose if he doesn't take care of me. So this time of temporary life in my mother's house is also a time of reflection about the things that are most important in a life, to a life.
(c)2009 Cathy Thomas Brownfield
Friday, May 1, 2009
Progress
Progress can be good or it can be bad. Maybe it can even be good AND bad.
For some time I told my parents that when something happened to Dad, Mom would not be able to stay alone. She insisted she wanted to stay in the house where she raised her children...We moved here when I was 4 years old. I am the eldest.
Dad passed away on March 18. We found that with repetition, Mom came to the point where she could remember that Dad is gone. She may say, "Where's Bill?" But almost immediately she will say, "Oh, that's right. He's gone, isn't he?" Not bad for someone in late stage Alzheimer's.
Mom has created a new task for me. She is still crocheting, at work on a tablecloth. But she can't get the individual pieces (blocks) to fit together right. So after I graduate from college in two weeks she is going to crochet the blocks and I'm going to piece them together. I guess they aren't really blocks. They are circles, so when they are pieced together, smaller blocks/circles will fill in the empty spaces between the circles. We will do this together, just as we've gone through the AD together.
There are difficult days, as anyone who has dealt with AD or is dealing with it now can tell you. One moment my mother can be delightfully happy. She walks into another room and less than five minutes later can return over-the-top angry and combative. I remember that Dad told me when they were in the car and he was driving, if he made her angry she didn't just hit him, she pummeled him. He stopped taking her in the car unless he absolutely had to. She hasn't threatened me in any way, but she has been angry with me.
Fortunately, I have two fantastic brothers. When I text them and say, "Need you now," they are here as quickly as they can get here. (Fast.) My sister-in-law and my daughters are here to back me up when I need to go to class. Neighbors are available to sit with Mom if I need them. There is a wonderful support system here.
But how long will our arrangement work? Well, we take things just one day at a time. Sometimes we take things one hour at a time, or one minute at a time. So far this is working.
Bless you, wherever you are, as you deal with your Alzheimer's situation.
For some time I told my parents that when something happened to Dad, Mom would not be able to stay alone. She insisted she wanted to stay in the house where she raised her children...We moved here when I was 4 years old. I am the eldest.
Dad passed away on March 18. We found that with repetition, Mom came to the point where she could remember that Dad is gone. She may say, "Where's Bill?" But almost immediately she will say, "Oh, that's right. He's gone, isn't he?" Not bad for someone in late stage Alzheimer's.
Mom has created a new task for me. She is still crocheting, at work on a tablecloth. But she can't get the individual pieces (blocks) to fit together right. So after I graduate from college in two weeks she is going to crochet the blocks and I'm going to piece them together. I guess they aren't really blocks. They are circles, so when they are pieced together, smaller blocks/circles will fill in the empty spaces between the circles. We will do this together, just as we've gone through the AD together.
There are difficult days, as anyone who has dealt with AD or is dealing with it now can tell you. One moment my mother can be delightfully happy. She walks into another room and less than five minutes later can return over-the-top angry and combative. I remember that Dad told me when they were in the car and he was driving, if he made her angry she didn't just hit him, she pummeled him. He stopped taking her in the car unless he absolutely had to. She hasn't threatened me in any way, but she has been angry with me.
Fortunately, I have two fantastic brothers. When I text them and say, "Need you now," they are here as quickly as they can get here. (Fast.) My sister-in-law and my daughters are here to back me up when I need to go to class. Neighbors are available to sit with Mom if I need them. There is a wonderful support system here.
But how long will our arrangement work? Well, we take things just one day at a time. Sometimes we take things one hour at a time, or one minute at a time. So far this is working.
Bless you, wherever you are, as you deal with your Alzheimer's situation.
Wednesday, August 20, 2008
Listening
There is a reason for everything.
God is in control.
Sometimes the bet thing you can do is just listen.
I didn't want to take a speech class that required me to stand in front of the class to speak, so I took "Listening." That's correct. Listening. We, as a society, don't listen well, and we don't read well, either. We see what we want to see, not always what is. How many times have you said something in an e-mail post and when the reply came into your inbox you knew the person read only part of what you wrote? You can tell by their answer they skimmed through what you said. They didn't read the whole thing.
The listening class taught me to listen; to look a little deeper than just the surface, to pay attention, to momentarily put aside what you are doing, look at the person you are talking with and listen with your full attention. Really listen.
Is this one of the lessons I'm supposed to be learning? Applying to my life? I have the book learning. Have I put it to practical use?
My husband doesn't usually go with me to my parents' home. I don't know why. I appreciate it when he does go, though, so he can sit with Mom and talk--or listen to the same stories over and over again, while I listen to Dad as he vents his frustrations. Everyone needs someone to just listen and encourage them. I try to do that for Dad. It's harder to do, though, when I go to see them by myself.
The latest question: If Mom talks about her parents and brothers every day, the same stories every day, should she continue to go to the elderly nutrition site? Dad is enjoying going there every day. He gets to talk to Frank and others that he knows. I'm thinking that they know about Alzheimer's so it's not really a big deal. But I told Dad to let me know when he's ready to have the meals delivered to the house instead.
He told me, last night, that he's thinking he wants to go back to church. He sits on the sofa on Sunday mornings to watch for me to go to church. He notices what other people wear to church, too.
"I can't believe how people dress to go to church," he said. "They aren't showing respect for the Lord!" When he was a child his mother insisted he wear a suit, dress shirt and tie, even if he was serving as altar boy, entering or exiting through the back door where nobody was going to see him. It was showing respect for the Lord. "You aren't going to church looking like a bum," his mom would tell him.
Dad isn't sure where he wants to go, Catholic Church or the church I attend. At one time I would have said an adamant, resounding NO! to Catholicism, but I have to say that Father Bob has shown more interest in my family than our minister of seven years who has preached several times, "We are not in the helping the needy business. We're in the saving souls business." I disagree with him. If the daily needs of the needy are not addressed--secure roof over their heads, food in their children's bellies, no utility shut-off notices--things that keep them on the rollercoaster of just rolling with the punches because there isn't time to plan ahead--those people aren't going to have time to think about where their souls are going to spend eternity. And all people living in poverty aren't there because they are too lazy to work. Anyone take a good look at the job market in the U.S. these days?
Listening, really listening, to Dad created a little extra something in our relationship. Dad and I have never really talked about religion. We never really talked about anything much. So this chance conversation--I only stopped in to pick up onions he'd pulled from the garden--was of value.
Listening. Sometimes it's the best thing you can do.
Saturday, August 16, 2008
Tension
As I'm learning more about Alzheimer's through my mother's progression through it, I am learning more about writing fiction. I can write about our experiences with a passion. How can I not when this emotional rollercoaster continues to peak higher and lower all the time. And how would I hurt inside if I didn't have gift enough to put the words down somewhere so I can release them, release the anger that overtakes me when my mother chooses a time to jump all over me about something. And a few minutes later she has no idea what I'm talking about when I say, "I don't want to fight with you any more, Mom."
I stopped blogging here. Notice the date of my last post, a year ago this month. It seemed wrong for me to spell out the privacy of my mother's life in such a public display. My intentions were to reach out to other caregivers, other family members, even those with AD who are in the earlier stages and CAN remember.
No one can know the full sorrow of AD until they have experienced it. I have grieved. And told myself that my grieving is done so I can do what needs to be done. The friends at the AD support group online say my mother is gone. But I can see that she still plays peek-a-boo with me. Some days she remembers things. Some days she has trouble. She still knows our names, though.
I ask, "Where do we go from here?" but I think I don't really want to know. I think I prefer to take one day at a time. That's best, one day at a time.
I stopped blogging here. Notice the date of my last post, a year ago this month. It seemed wrong for me to spell out the privacy of my mother's life in such a public display. My intentions were to reach out to other caregivers, other family members, even those with AD who are in the earlier stages and CAN remember.
No one can know the full sorrow of AD until they have experienced it. I have grieved. And told myself that my grieving is done so I can do what needs to be done. The friends at the AD support group online say my mother is gone. But I can see that she still plays peek-a-boo with me. Some days she remembers things. Some days she has trouble. She still knows our names, though.
I ask, "Where do we go from here?" but I think I don't really want to know. I think I prefer to take one day at a time. That's best, one day at a time.
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