...that she would get to a point where nobody would be able to stand being around her.
Dad has his own dragons to slay. He's with Mom 24/7/365. When he can't handle things any longer he goes to the garage or the backyard to putter. To relieve his frustrations he waits until we are alone to roll his eyes and vent. I know he loves Mom or he wouldn't still be there with her. He feels a strong commitment to being there. It might have something to do with the day I said, "She always stood by you, Dad. It wasn't always easy. You need to stand by her, now. She needs you to do that, now."
But I know that it's hard for him to be there all the time, to hear her say the same thing a dozen times...What time is it? What day is it? What time is it? And it used to be hard to tell when something she said was really so or a story. Now the stories are obvious. Dad gets upset with her. The rest of us -- who don't live there 24/7/365 -- just go along with what she says without getting the least bit perturbed. We can walk away, leave them in the safety of their four walls, and not have to go back for a day, a weekend, or a week.
Awhile back I asked Dad to get the motorhome running so we can go camping. Mom keeps saying she'd like to go camping. He told me a couple of days ago that he's almost got things ready so Mom and I can go camping. If I can manage it, we will go camping on weekends until the weather won't permit it any longer, because that's what Mom wants and it seems the very least I can do when her days and years are waning. Waiting another year til next spring may be too long. We've spent too long already thinking, "Someday..." Someday never comes.
Dad deserves time off for being there all the time. He needs to be able to kick back and put his feet up and just be without being on duty constantly to prevent fires on top of the stove when she forgets to shut off burners. And clean out things that Mom won't tend to and gets mad at him when she sees him working around the house.
I'm returning to the college classroom to complete my BA in English...minor in writing...Honors College. I'm trying to finish in a year so my parents can see one of their children graduate from college...with honors. They have always been there, always done their best for their children. I want them to see this.
She's looking for hope.
Monday, August 20, 2007
Friday, August 10, 2007
Stormy weather
Stormy weather hit our town and everyplace else across the state yesterday and motivated its way over Pennsylvania, Maryland, Delaware and D.C. And lots of other places across the country. The humidity and heat is record-shattering, and one can't help the global warming/greenhouse effect issues coming to mind.
Mom and Dad are staying inside as much as they can. But the steamy windows bother Dad. The central air was on cooling the inside of the house, but the heat outside was so intense, it created vapors on the windows. And they got into a bickering match about it. It's no big deal if the windows steam up. But to Dad it was.
I bought Omega 3 Fish Oil a couple of weeks ago and gave a bottle of it to Mom. If the Alzheimer's research people are doing a clinical trial for this, there might be something to it. It can't hurt. Might help. Mom started to take it immediately, as did I. But remembering to take the time for gulping down these horsepills is an issue for me. It's not so much forgetting as taking the time. Slow down for 30 seconds and take it. What's 30 seconds? Half a minute.
And it's all like chasing the wind. Why am I in a hurry going nowhere?
Mom is always happy to see me when I walk in the door. I need to walk in the door more often. Dad's happy to see me too. He told me he doesn't know how he'd handle all this without me. Well, someone else would help him...maybe. I don't know. I am concerned how I'm going to go to college 12-15 hours a semester for the next 1-2 years and help him and Mom, too. But my brother said I have to live my life for me, so I will do this. Educate a woman and you educate a family.
Mom and Dad are staying inside as much as they can. But the steamy windows bother Dad. The central air was on cooling the inside of the house, but the heat outside was so intense, it created vapors on the windows. And they got into a bickering match about it. It's no big deal if the windows steam up. But to Dad it was.
I bought Omega 3 Fish Oil a couple of weeks ago and gave a bottle of it to Mom. If the Alzheimer's research people are doing a clinical trial for this, there might be something to it. It can't hurt. Might help. Mom started to take it immediately, as did I. But remembering to take the time for gulping down these horsepills is an issue for me. It's not so much forgetting as taking the time. Slow down for 30 seconds and take it. What's 30 seconds? Half a minute.
And it's all like chasing the wind. Why am I in a hurry going nowhere?
Mom is always happy to see me when I walk in the door. I need to walk in the door more often. Dad's happy to see me too. He told me he doesn't know how he'd handle all this without me. Well, someone else would help him...maybe. I don't know. I am concerned how I'm going to go to college 12-15 hours a semester for the next 1-2 years and help him and Mom, too. But my brother said I have to live my life for me, so I will do this. Educate a woman and you educate a family.
Wednesday, July 25, 2007
Disappointing meeting
I'm writing an essay about the meeting in Canfield. I thought we were going to be able to get Mom into a clinical trial for one of the two Alzheimer's medications that are in the news. The clinical trials on Flurizan and Alzemed are closed. There is no recruiting going on for them. A man asked, "When will the medications be available?" The two researchers, one from the University Memory and Aging Center at Case Western Reserve and the other from Alzheimer Research Center at the University of Pittsburgh, concurred that it will be at least three or four years. The man spoke so everyone could hear, "That's not soon enough."
When we started out, I thought I had to be at my mother's side from that very moment. She took the news so hard. But she and Dad insisted that it was not the time. They didn't expect me to be there every day because I have a family and home of my own to take care of. And so I backed off. It took a lot for me to back off. But, I did. Now I'm at the juncture in the road where I think it's time for me to be there more. And that's OK.
I was going to look for a job. We need a new kitchen range/oven and refrigerator. I need a car. I'm thinking of asking Mom how upset would she be if I used her car for a while. That would take care of that need. I think I need to take my computer to work at their house. It would make things easier for Dad if I'm around. Everything else has settled down pretty much, I think. DD4 will move to the college campus next month. DD3 is either working, with her fiance, or friends or her sisters so I think it's OK now for me to be at Mom & Dad's.
It's not that I want to stop living my life to take care of them. It's that I need to blend their needs into my routine. I need to be there for them because someday I will be the needy one and I hope that there will be someone who will want to take care of me.
When we started out, I thought I had to be at my mother's side from that very moment. She took the news so hard. But she and Dad insisted that it was not the time. They didn't expect me to be there every day because I have a family and home of my own to take care of. And so I backed off. It took a lot for me to back off. But, I did. Now I'm at the juncture in the road where I think it's time for me to be there more. And that's OK.
I was going to look for a job. We need a new kitchen range/oven and refrigerator. I need a car. I'm thinking of asking Mom how upset would she be if I used her car for a while. That would take care of that need. I think I need to take my computer to work at their house. It would make things easier for Dad if I'm around. Everything else has settled down pretty much, I think. DD4 will move to the college campus next month. DD3 is either working, with her fiance, or friends or her sisters so I think it's OK now for me to be at Mom & Dad's.
It's not that I want to stop living my life to take care of them. It's that I need to blend their needs into my routine. I need to be there for them because someday I will be the needy one and I hope that there will be someone who will want to take care of me.
Monday, July 9, 2007
Clinical trials
Mom and Dad were excited about something they read in the June issue of AARP Bulletin. The name of the article: Closing in on Alzheimer's. The drug Flurizan is the buzz word, a very promising buzz word, in this article. But a couple of days ago an Alzheimer's newsletter arrived in postal mail. I didn't open it until yesterday afternoon. And now I'm excited.
When Mom showed me that AARP article, I brought it home, called the doctor's office and asked about it. Mom had said, "I want to get in on the clinical trials." Gina checked with the local pharmacy but Flurizan is not on the market yet. She said to bring a copy of the article down to the office and they would look into it.
Then this newsletter came in yesterday. There are clinical trials open in our area. There will be a meeting in Canfield about these clinicals and the meds in them. I'm going to make the reservations for us to go. I think Mom and Dad both will be excited, too.
To find clinical trials in your area, call 800-439-4380. This government agency, Alzheimer's Disease Education and Referral Center, will help you find studies and and answer questions about them. Online you can find information at www.nia.nih.gov/Alzheimer's or www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials. The Alzheimer's Association is online at ww.alz.org.
When Mom showed me that AARP article, I brought it home, called the doctor's office and asked about it. Mom had said, "I want to get in on the clinical trials." Gina checked with the local pharmacy but Flurizan is not on the market yet. She said to bring a copy of the article down to the office and they would look into it.
Then this newsletter came in yesterday. There are clinical trials open in our area. There will be a meeting in Canfield about these clinicals and the meds in them. I'm going to make the reservations for us to go. I think Mom and Dad both will be excited, too.
To find clinical trials in your area, call 800-439-4380. This government agency, Alzheimer's Disease Education and Referral Center, will help you find studies and and answer questions about them. Online you can find information at www.nia.nih.gov/Alzheimer's or www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials. The Alzheimer's Association is online at ww.alz.org.
Friday, July 6, 2007
Week's End
Dad has physical therapy today. He's wrapping up three weeks of it for his stiff neck. Mom has her mammogram and some blood work done today before Dad goes to physical therapy. We'll drop him off and go to Wal-Mart to run around while he's doing his thing.
I'm getting ready to paint their bathroom. I was going to do it this weekend but the 4th of July celebration was postponed to tomorrow because there were thunderstorms forecast on the 4th. In fact, we were under a tornado warning until 9 p.m.
There isn't much more to say about Mom and Alzheimer's today. She still is interested in getting into a clinical trial of AD medications showing promise. Like Flurizan, which has reportedly made a difference in AD patients...restoring quality of life. But even that won't give her back what she had before the stroke. She wants to drive, but I told her to drive she has to be able to use her right leg without lifting it into and out of the car. I know my mother. She'll work at strengthening that leg. I don't know if she can realistically do it, but she'll try hard because she wants to drive again.
I'm getting ready to paint their bathroom. I was going to do it this weekend but the 4th of July celebration was postponed to tomorrow because there were thunderstorms forecast on the 4th. In fact, we were under a tornado warning until 9 p.m.
There isn't much more to say about Mom and Alzheimer's today. She still is interested in getting into a clinical trial of AD medications showing promise. Like Flurizan, which has reportedly made a difference in AD patients...restoring quality of life. But even that won't give her back what she had before the stroke. She wants to drive, but I told her to drive she has to be able to use her right leg without lifting it into and out of the car. I know my mother. She'll work at strengthening that leg. I don't know if she can realistically do it, but she'll try hard because she wants to drive again.
Monday, July 2, 2007
Thinking
I can see that the wheels still turn in my mother's brain. When she looks at me and I look back into her eyes I see that she is still fighting to keep her brain function. She still crochets, though the patterns are very simple ones...like the basic granny square. She still works the sudoku puzzles even if they take her much of the day and never are completed. She still reads articles about Alzheimer's hoping that some breaking something will announce a cure or a medication that will give her recovery of what she has lost...or to hold onto what she has still.
AARP Bulletin, June edition, included an article entitled "Closing in on Alzheimer's." It speaks of a new medication MPC-7869, aka Flurizan. For some patients who participated/are participating in the clinical trials, the medication gave them back their memories and quality of life.
"I want to be in on the clinical trials," Mom said. "It sounds like what I've been looking for. I want to try it."
I called the doctor's office to ask about it. The nurse there called the local pharmacy. It isn't on the market yet, but if I take the article in the doctor's staff will try to find out more about it. So, I made a copy of the article and walked it to the office in high heat and humidity, a 15 minute walk from my house. The office was closed...early. I carried the article back home and it's still on top of the entertainment center because the demands are many and the time is limited. But I've added it to my to do list for today.
AARP Bulletin, June edition, included an article entitled "Closing in on Alzheimer's." It speaks of a new medication MPC-7869, aka Flurizan. For some patients who participated/are participating in the clinical trials, the medication gave them back their memories and quality of life.
"I want to be in on the clinical trials," Mom said. "It sounds like what I've been looking for. I want to try it."
I called the doctor's office to ask about it. The nurse there called the local pharmacy. It isn't on the market yet, but if I take the article in the doctor's staff will try to find out more about it. So, I made a copy of the article and walked it to the office in high heat and humidity, a 15 minute walk from my house. The office was closed...early. I carried the article back home and it's still on top of the entertainment center because the demands are many and the time is limited. But I've added it to my to do list for today.
Tuesday, June 26, 2007
Notes on a steamy summer day
It was 94 degrees today, and has been like this for most of the month of June. We rely on A/C to keep us comfortable. A song by The Eagles or was it Don Henley...The heat is on...
When we returned from North Carolina Mom had the June 2007 issue of AARP Bulletin in which there is an article about "Closing in on Alzheimer's." There have been clinical trials for a new medication, MPC-7869 aka Flurizan. It seems to be giving back patient memories, improving quality of life. And Mom wants in on it.
I called the doctor's office. I figure if anyone will know, it will be Dr. G. The nurse said she'd look into it. She called the pharmacist and there was no listing for it. Gina asked me to bring the article to the office. I printed it out and walked it to the office, since I needed the exercise. But the office was closed when I got there, locked up tight. And it was only 4:14 on a day that they should have been open until 4:30. Oh, well.
Tomorrow is another day. Dad asked me to go up to make sure Mom gets her medicine and breakfast in the morning and on Thursday morning while he goes for physical therapy. I'll take the article with me and drop it off.
And we'll see if there is some magical something that will help Mom keep her memories until the day she dies.
When we returned from North Carolina Mom had the June 2007 issue of AARP Bulletin in which there is an article about "Closing in on Alzheimer's." There have been clinical trials for a new medication, MPC-7869 aka Flurizan. It seems to be giving back patient memories, improving quality of life. And Mom wants in on it.
I called the doctor's office. I figure if anyone will know, it will be Dr. G. The nurse said she'd look into it. She called the pharmacist and there was no listing for it. Gina asked me to bring the article to the office. I printed it out and walked it to the office, since I needed the exercise. But the office was closed when I got there, locked up tight. And it was only 4:14 on a day that they should have been open until 4:30. Oh, well.
Tomorrow is another day. Dad asked me to go up to make sure Mom gets her medicine and breakfast in the morning and on Thursday morning while he goes for physical therapy. I'll take the article with me and drop it off.
And we'll see if there is some magical something that will help Mom keep her memories until the day she dies.
Monday, June 18, 2007
New strides ~ New hope
I stopped to visit my parents last night. Dad asked if Mom had shown me the paper they got in the mail about Alzheimer's. It's actually a publication called AARP Bulletin. The June 2007 issue features an exclusive report on Alzheimer's and the new drugs that offer real hope for reversing the disease. Mom wants to get in on the clinical trials. So I brought home the publication and I'm going to do an online search for more information.
It makes sense that Mom would want to do this. She was one of the early successes for restoring hearing through a particular kind of surgery for otosclerosis. And Dad was an early success for hip joint replacement surgery, and later on, for drugs that improve quality of life and comfort for people with emphysema. So, her request to get in on the clinicals makes sense to me. If there's a chance for her to get back her memories and live out the rest of her life with her excellent brain restored, well, we're going to do it.
Interesting? Are you interested, too? Phone: 1-800-438-4380 (Government's Alzheimer's Disease Education and Referral Center to find out about clinical trials and studies in your area), www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials (help to locate studies and answer questions about them) and www.alz.org to access information about the Alzheimer's Association, trials information and more about the disease.
Good luck!!
It makes sense that Mom would want to do this. She was one of the early successes for restoring hearing through a particular kind of surgery for otosclerosis. And Dad was an early success for hip joint replacement surgery, and later on, for drugs that improve quality of life and comfort for people with emphysema. So, her request to get in on the clinicals makes sense to me. If there's a chance for her to get back her memories and live out the rest of her life with her excellent brain restored, well, we're going to do it.
Interesting? Are you interested, too? Phone: 1-800-438-4380 (Government's Alzheimer's Disease Education and Referral Center to find out about clinical trials and studies in your area), www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials (help to locate studies and answer questions about them) and www.alz.org to access information about the Alzheimer's Association, trials information and more about the disease.
Good luck!!
Tuesday, May 29, 2007
A spring evening
I know that the tasks that my father has undertaken are overwhelming to him sometimes. Was it a year ago that he said to me, "I can't stay. I just can't handle this any more." He spoke of another man in town whose wife became wheelchair-bound and was moved to a nursing facility. When he couldn't handle things any more, that man told his wife he wanted a divorce. Dad said thought the woman had Alzheimer's and he thought the man was wrong, but this day Dad wasn't so sure.
I corrected him about what was wrong with the man's wife, Multiple Sclerosis, not Alzheimer's. And I reminded him that wedding vows are about sickness and health til death. I don't have much respect for that man now. If he thought the MS was inconvenient for him, how did he think his wife felt? Nobody gave her a choice. She didn't get to say "Sure, that's what I want." She doesn't have the option of getting up and walking away. She is a prisoner in that wheelchair through no choice of her own. And HE wanted a divorce? Sorry. I shouldn't be judging anyone. But I don't understand how he could abandon her that way. The message that I got was, "I love you as long as you can walk and talk and make love and cook for me and clean for me and take care of me. but I won't love you any more when you can't do anything for yourself any more because I just can't take it."
Dad decided to stay when I was finished. "Mom always stood beside you no matter what."
But the burden is getting greater for him as Mom's condition progresses. And he is growing more frail himself. And my brother said, "You can't put your life on hold to take care of Mom and Dad," and I am thinking, "Someone has to. What other options are there?"
Summer is here. This is the last week of school. There are Little League baseball games to attend. A college student to help get everything set for her to go to live on the campus in the fall. Stories and articles to write. Parents to spend days with to help them enjoy quality of life for the rest of their days.
My husband couldn't keep up with the rapid fire thoughts that my mouth couldn't even keep up with. He said, "I'm starting to worry about you." The remark made me angry. "You don't have to worry about me," I answered. But further down the street I said, "Yes, you do! Maybe you SHOULD be worrying about me." I listed a ton of things I'm responsible for and how little help I get with things that my family could do to help me cover all of my bases. And I was amazed for the rest of the day as he made efforts to be concerned about me, to help me. Oh, that he would do that every day.
I corrected him about what was wrong with the man's wife, Multiple Sclerosis, not Alzheimer's. And I reminded him that wedding vows are about sickness and health til death. I don't have much respect for that man now. If he thought the MS was inconvenient for him, how did he think his wife felt? Nobody gave her a choice. She didn't get to say "Sure, that's what I want." She doesn't have the option of getting up and walking away. She is a prisoner in that wheelchair through no choice of her own. And HE wanted a divorce? Sorry. I shouldn't be judging anyone. But I don't understand how he could abandon her that way. The message that I got was, "I love you as long as you can walk and talk and make love and cook for me and clean for me and take care of me. but I won't love you any more when you can't do anything for yourself any more because I just can't take it."
Dad decided to stay when I was finished. "Mom always stood beside you no matter what."
But the burden is getting greater for him as Mom's condition progresses. And he is growing more frail himself. And my brother said, "You can't put your life on hold to take care of Mom and Dad," and I am thinking, "Someone has to. What other options are there?"
Summer is here. This is the last week of school. There are Little League baseball games to attend. A college student to help get everything set for her to go to live on the campus in the fall. Stories and articles to write. Parents to spend days with to help them enjoy quality of life for the rest of their days.
My husband couldn't keep up with the rapid fire thoughts that my mouth couldn't even keep up with. He said, "I'm starting to worry about you." The remark made me angry. "You don't have to worry about me," I answered. But further down the street I said, "Yes, you do! Maybe you SHOULD be worrying about me." I listed a ton of things I'm responsible for and how little help I get with things that my family could do to help me cover all of my bases. And I was amazed for the rest of the day as he made efforts to be concerned about me, to help me. Oh, that he would do that every day.
Friday, May 25, 2007
I don't know why...
Dad called. Mom had a lump on the left side of her head, just behind her ear. She thought she was getting another one on the other side. He'd been trying to get through to the doctor's office, but kept getting a redial message. I called and set up an appointment for 2:45. "I'll meet you there," I told him.
I don't know how they got past me. I was sitting in the parking lot waiting...and writing. That explains how I missed them. When I open that notebook and begin to write I lose sight of everything else. I get lost in my work. I looked up and saw the car. Doggone it! I hurried inside.
I peeked over the counter and asked, "OK. What did you do with my mother?"
"Probably the room at the end of the hall." Kelly laughed and pointed.
"Thanks." A good rapport with the staff at the doctor's office is important. I can think of times when I was so frazzled by so much responsibility--job outside the home, family to take care of, endless chore lists for a large family--there was so much that one little wrench thrown into the works could topple me. This humorous moment was a welcome one.
"Ah-ha! You thought you could slip past me, huh?" I greeted Mom, Dad and Gina, the nurse.
When Gina had finished with the statistical data--blood pressure, pulse, temperature, etc.--she left the three of us alone. Mom looked up at me. I could plainly see she was glad to see me. A slight pang of guilt struck me. I'm still spreading myself thin trying to take care of the people I love. Just because the youngest are now 20 doesn't mean that my life isn't busy. I keep asking myself how I had time to do everything I do and still work outside the home a minimum of 40 hours a week!
Mom said, "I don't understand why I got Alzheimer's."
I looked back at her and answered quietly, "I don't know, either, Mom." I didn't add how difficult it is to see her so frail. She always was so sharp. I keep saying that! I need to be there more. I need to go up and walk with her every day. But there are so many other things I'm trying to do. So many other places I need to be also. I'm trying to get those things taken care of while I can...but my mother needs me, too. She is dependent on her family to get her out of the house. She says she can still drive, but we all know that her driving days are over. And I'm thinking that it's time to remove the Internet from her computer, to save the money that she's paying for the service.
But though I should be there for her, I became overwhelmed when I fell so short. And I stopped going up to their house all the time. That was a stark difference from earlier on when Mom didn't want me to be there all the time because she was perfectly able to take care of herself, she said. In retrospect, I thought when the diagnosis was made that meant I needed to be on top of everything right then. But the process has been a gradual thing, a subtle thing. But when your brain is tired, or you are too close to the situation, it's hard to distinguish where the lines are and when you've crossed over them.
And I think about Dad...how he's taking so much of the responsibility for Mom's care...how they ask for so little.
But my brother told me I can't put my life on hold for our parents. But someone has to keep an eye on them. Someone has to be on the inside to understand what is going on and get help for them when they need it. They have to have someone they can trust. And they don't have friends. I tried to talk Mom into going to Senior Citizens but she wouldn't go. I tried to talk them into going to the Elderly Nutrition site to have dinner with other senior citizens, but they won't go.
Several months ago I was visiting. We were talking. Mom said, "I think God is mad at me."
"Why?" I was puzzled by that concept. Why would God be mad at my mother? This woman who has done the best she could with what she had...often not enough to work with. This woman who had been deaf for a number of years--never heard her babies cry...she felt us cry...but never gave up on God. She always knew when the time was right he would heal her ears. And he did. This woman who, when her sister accused her of not executing their mother's estate fairly, still executied it fairly, evenly divided everything so all five got an equal share. This woman who has always done the best she knew how...Why would God be angry with her?
"I haven't gone to his house. It says in the Bible that we're supposed to go to God's house and I haven't for a long time."
The idea puzzled me since I learned ages ago that each of us is a temple of God. He lives within us, so we are in him and he in us all the time. The church building isn't anything but a meeting place for those who believe the same.
"I don't think that's right, Mom. I don't know how God feels about you, but my best guess is that he's not mad at you. But if you want to go to church, you can go. I'll even stop and pick you up if you want me to."
She hasn't gone yet. Maybe it's time for me to call Saturday night to remind them of church. Then call them Sunday morning when I get up so they can get ready, and then leave early enough that I can go to their house and walk them to church. That will require my being less selfish and self-centered in the mornings.
I treasure my mornings at the computer. The window is in front of me, behind my desk so I can see the world as I work...the trees on the hillside across the creek, separated from me by all of the houses and garages between here and the Middle Fork of Little Beaver Creek. And when I'm writing I lose all track of time and place. I get lost in my work because I enjoy it so much. And it has worth. And it completes me, something my husband doesn't seem to grasp. something that hurts him somehow.
"I don't know why I got Alzheimer's," Mom said. Maybe it was God's way of giving her family notice that we need to be a family again instead of letting time and space get between us. We don't know each other any more. But this event in our matriarch's life is bringing us back to center. But how do I explain that to her? How do I explain that to anyone? Maybe I should just accept it as a gift and not say anything...just enjoy the nurturing and be a nurturer. And when will everyone accept that this is more important than dollars and cents?
Am I even making sense?
I don't know how they got past me. I was sitting in the parking lot waiting...and writing. That explains how I missed them. When I open that notebook and begin to write I lose sight of everything else. I get lost in my work. I looked up and saw the car. Doggone it! I hurried inside.
I peeked over the counter and asked, "OK. What did you do with my mother?"
"Probably the room at the end of the hall." Kelly laughed and pointed.
"Thanks." A good rapport with the staff at the doctor's office is important. I can think of times when I was so frazzled by so much responsibility--job outside the home, family to take care of, endless chore lists for a large family--there was so much that one little wrench thrown into the works could topple me. This humorous moment was a welcome one.
"Ah-ha! You thought you could slip past me, huh?" I greeted Mom, Dad and Gina, the nurse.
When Gina had finished with the statistical data--blood pressure, pulse, temperature, etc.--she left the three of us alone. Mom looked up at me. I could plainly see she was glad to see me. A slight pang of guilt struck me. I'm still spreading myself thin trying to take care of the people I love. Just because the youngest are now 20 doesn't mean that my life isn't busy. I keep asking myself how I had time to do everything I do and still work outside the home a minimum of 40 hours a week!
Mom said, "I don't understand why I got Alzheimer's."
I looked back at her and answered quietly, "I don't know, either, Mom." I didn't add how difficult it is to see her so frail. She always was so sharp. I keep saying that! I need to be there more. I need to go up and walk with her every day. But there are so many other things I'm trying to do. So many other places I need to be also. I'm trying to get those things taken care of while I can...but my mother needs me, too. She is dependent on her family to get her out of the house. She says she can still drive, but we all know that her driving days are over. And I'm thinking that it's time to remove the Internet from her computer, to save the money that she's paying for the service.
But though I should be there for her, I became overwhelmed when I fell so short. And I stopped going up to their house all the time. That was a stark difference from earlier on when Mom didn't want me to be there all the time because she was perfectly able to take care of herself, she said. In retrospect, I thought when the diagnosis was made that meant I needed to be on top of everything right then. But the process has been a gradual thing, a subtle thing. But when your brain is tired, or you are too close to the situation, it's hard to distinguish where the lines are and when you've crossed over them.
And I think about Dad...how he's taking so much of the responsibility for Mom's care...how they ask for so little.
But my brother told me I can't put my life on hold for our parents. But someone has to keep an eye on them. Someone has to be on the inside to understand what is going on and get help for them when they need it. They have to have someone they can trust. And they don't have friends. I tried to talk Mom into going to Senior Citizens but she wouldn't go. I tried to talk them into going to the Elderly Nutrition site to have dinner with other senior citizens, but they won't go.
Several months ago I was visiting. We were talking. Mom said, "I think God is mad at me."
"Why?" I was puzzled by that concept. Why would God be mad at my mother? This woman who has done the best she could with what she had...often not enough to work with. This woman who had been deaf for a number of years--never heard her babies cry...she felt us cry...but never gave up on God. She always knew when the time was right he would heal her ears. And he did. This woman who, when her sister accused her of not executing their mother's estate fairly, still executied it fairly, evenly divided everything so all five got an equal share. This woman who has always done the best she knew how...Why would God be angry with her?
"I haven't gone to his house. It says in the Bible that we're supposed to go to God's house and I haven't for a long time."
The idea puzzled me since I learned ages ago that each of us is a temple of God. He lives within us, so we are in him and he in us all the time. The church building isn't anything but a meeting place for those who believe the same.
"I don't think that's right, Mom. I don't know how God feels about you, but my best guess is that he's not mad at you. But if you want to go to church, you can go. I'll even stop and pick you up if you want me to."
She hasn't gone yet. Maybe it's time for me to call Saturday night to remind them of church. Then call them Sunday morning when I get up so they can get ready, and then leave early enough that I can go to their house and walk them to church. That will require my being less selfish and self-centered in the mornings.
I treasure my mornings at the computer. The window is in front of me, behind my desk so I can see the world as I work...the trees on the hillside across the creek, separated from me by all of the houses and garages between here and the Middle Fork of Little Beaver Creek. And when I'm writing I lose all track of time and place. I get lost in my work because I enjoy it so much. And it has worth. And it completes me, something my husband doesn't seem to grasp. something that hurts him somehow.
"I don't know why I got Alzheimer's," Mom said. Maybe it was God's way of giving her family notice that we need to be a family again instead of letting time and space get between us. We don't know each other any more. But this event in our matriarch's life is bringing us back to center. But how do I explain that to her? How do I explain that to anyone? Maybe I should just accept it as a gift and not say anything...just enjoy the nurturing and be a nurturer. And when will everyone accept that this is more important than dollars and cents?
Am I even making sense?
Monday, May 14, 2007
I can still drive
Uh, no, Mom. You can't. You had that stroke and still have trouble with your leg.
But I still know my way around.
But your reaction time is much slower than it used to be and there are a lot of crazy drivers out there.
Silence. Crochet hook working.
Guilt. Sadness.
But in a few minutes we've moved on to something else. And I know it's OK. And when I leave her house she will still say, "I love you, honey, and I wouldn't trade you for anything."
A couple of weeks ago she said to me, "Did you say you have a grandbaby to rock?"
I didn't, but I do have a grandbaby to rock. So, she gave me an afghan that she'd crocheted in white, pink and blue. I brought it home, treasuring its simplicity because at least Mom is still crocheting!
A couple of nights ago she said, "Do you have a grandbaby who needs an 'afigan'?" She gave me another blanket, this one white, red and blue to give to my daughter whose baby is five months old.
I was heartened when I went into her house that evening. She was crocheting with size 30 crochet thread. "I haven't worked with this for awhile," she said with a smile. And every time she says, "Your dad doesn't like me to crochet," I tell her, "It's OK. I told him it's OK for you to crochet as much as you want."
The morning was beautiful this morning, but the clouds have rolled in this afternoon. I don't know if it will rain. But I know that we still have Mom, for the most part. And I'm going to take these articles I printed from the Internet so she and Dad can read them. There are strides being met and my prayers are that the answers will come soon...for our family and everyone else's who is struggling with memory impairment.
But I still know my way around.
But your reaction time is much slower than it used to be and there are a lot of crazy drivers out there.
Silence. Crochet hook working.
Guilt. Sadness.
But in a few minutes we've moved on to something else. And I know it's OK. And when I leave her house she will still say, "I love you, honey, and I wouldn't trade you for anything."
A couple of weeks ago she said to me, "Did you say you have a grandbaby to rock?"
I didn't, but I do have a grandbaby to rock. So, she gave me an afghan that she'd crocheted in white, pink and blue. I brought it home, treasuring its simplicity because at least Mom is still crocheting!
A couple of nights ago she said, "Do you have a grandbaby who needs an 'afigan'?" She gave me another blanket, this one white, red and blue to give to my daughter whose baby is five months old.
I was heartened when I went into her house that evening. She was crocheting with size 30 crochet thread. "I haven't worked with this for awhile," she said with a smile. And every time she says, "Your dad doesn't like me to crochet," I tell her, "It's OK. I told him it's OK for you to crochet as much as you want."
The morning was beautiful this morning, but the clouds have rolled in this afternoon. I don't know if it will rain. But I know that we still have Mom, for the most part. And I'm going to take these articles I printed from the Internet so she and Dad can read them. There are strides being met and my prayers are that the answers will come soon...for our family and everyone else's who is struggling with memory impairment.
Tuesday, May 1, 2007
The most difficult I've ever done
Mom says that a lot these days. And has for awhile. I've told her all along that as long as she's crocheting I'm not going to worry. But how sad it is for this heart of mine to see her now crocheting granny squares. Simple granny squares when she used to crochet advanced patterns!
I did some accidental research on the Internet today.
Reversing Alzheimer's memory loss may be possible
http://news.yahoo.com/s/nm/20070430/hl_nm/alzheimers_memory_dc_4
Many Alzheimer's caregivers seek help in God
http://www.latimes.com/news/local/la-me-alzheimer14mar14,1,3165400.story?coll=la-headlines-california
Open the door to curing Alzheimer's
http://www.washingtonpost.com/wp-dyn/content/article/2006/06/26/AR2006062600978.html
Paying for Alzheimer's
http://www.washtimes.com/op-ed/20050706-094909-5349r.htm
So where are we headed? One day at a time.
I did some accidental research on the Internet today.
Reversing Alzheimer's memory loss may be possible
http://news.yahoo.com/s/nm/20070430/hl_nm/alzheimers_memory_dc_4
Many Alzheimer's caregivers seek help in God
http://www.latimes.com/news/local/la-me-alzheimer14mar14,1,3165400.story?coll=la-headlines-california
Open the door to curing Alzheimer's
http://www.washingtonpost.com/wp-dyn/content/article/2006/06/26/AR2006062600978.html
Paying for Alzheimer's
http://www.washtimes.com/op-ed/20050706-094909-5349r.htm
So where are we headed? One day at a time.
Tuesday, April 24, 2007
Live day to day
One thing I've learned from repetition: Live each day and let tomorrow take care of itself because yesterday is done and tomorrow never comes. It's always today. And there are a lot of reasons to be aware of our surroundings: the people who populate our lives, the things that truly are important to us rather than the things we've been THINKING are important to us and those things that bring peace, joy and tranquility to us.
Mom said, "I don't know why I'm still here." I know she didn't mean to make any of us feel guilty. And I was the only one who was there, so my brothers aren't aware of any guilt trips. I don't get up to Mom and Dad's house as often as I should/could/would. Is it because my youngest brother said, "You can't put your life on hold for Mom and Dad"? Well, maybe I can't but someone has to be there for them. Who else is going to do what needs done?
"We still need you, Mom," I said. But she was probably thinking, "Then why aren't any of you around so I can feel needed?"
"God isn't done with you here, yet," I added. "When He's ready..."
When I hugged her before I left her house, she said, "I love you, honey. I wouldn't trade you for anything."
"I know," I said. "You tell me that all the time. It's so good to be loved."
And I vow I'll get up to see them more, but life intervenes and I'm feeling like I'm scattered all over the place. At my age I'm feeling like I need to be focused on my writing because it's now or never. In 20 years I could be the next version of the woman in front of me...the woman I have loved, admired and respected every day of my life.
The next day (yesterday) I had to take her to a doctor appointment. She held onto the corner of the house where the steps lead from the porch to the sidewalk. She's changed from the confident woman she used to be. As much as I've been looking to simplify my life, the simplicity that is pooling around her was not what I had in mind. She made her way to the car, and I was stricken by the thought that she is becoming frail. The time was when she would scurry to my car and we'd take off for shopping excursions or work on quilts together or take a trip together.
When we walked up the ramp to the doctor's appointment she said, "I'm getting so frail." So, she realizes that. I felt a tug at my heart. Inside the exam room while we waited for Dr. Getzinger she said, "I want another dog but they won't let me have one."
We've talked about that time and time again. "I don't think you can take care of a dog."
"I took care of Josh. He was no trouble."
"You got Josh before the Alzheimer's, Mom. There's a lot of work to taking care of and training a puppy. I just don't think it's a good idea. You have trouble taking care of yourself."
"I can take care of a dog."
Ten minutes ago she was talking about how frail she's getting.
Dad's having trouble with his COPD. He told her the way things are going, she won't have to worry about him much longer. She still knows that Dad is the only reason she is still living at home, the home she's lived in for 50 years. She knows if he dies first, she will have to come and live with me. Dad is working so hard to keep himself going so they can both live out their lives independently.
I remember a couple of years ago when I went to Florida with Maureen. There was a story in the newspaper there of a firecall. Of the firefighters who needed to speak with a counselor when they watched the elderly couple inside that vehicle burn up because the driver had locked the car, set it on fire and refused to unlock the doors.
It sounded to me like the man had driven his wife to the beach so they could watch the tide. Maybe it was their favorite place, someplace that they had shared many times. Maybe the lost look in her eyes was the Alzheimer's at full-blown pitch. Maybe he worried what would happen to her if he died first and he just couldn't handle that thought.
We all need to live just for today. Because today is all that we really have. And every today after this one.
Mom said, "I don't know why I'm still here." I know she didn't mean to make any of us feel guilty. And I was the only one who was there, so my brothers aren't aware of any guilt trips. I don't get up to Mom and Dad's house as often as I should/could/would. Is it because my youngest brother said, "You can't put your life on hold for Mom and Dad"? Well, maybe I can't but someone has to be there for them. Who else is going to do what needs done?
"We still need you, Mom," I said. But she was probably thinking, "Then why aren't any of you around so I can feel needed?"
"God isn't done with you here, yet," I added. "When He's ready..."
When I hugged her before I left her house, she said, "I love you, honey. I wouldn't trade you for anything."
"I know," I said. "You tell me that all the time. It's so good to be loved."
And I vow I'll get up to see them more, but life intervenes and I'm feeling like I'm scattered all over the place. At my age I'm feeling like I need to be focused on my writing because it's now or never. In 20 years I could be the next version of the woman in front of me...the woman I have loved, admired and respected every day of my life.
The next day (yesterday) I had to take her to a doctor appointment. She held onto the corner of the house where the steps lead from the porch to the sidewalk. She's changed from the confident woman she used to be. As much as I've been looking to simplify my life, the simplicity that is pooling around her was not what I had in mind. She made her way to the car, and I was stricken by the thought that she is becoming frail. The time was when she would scurry to my car and we'd take off for shopping excursions or work on quilts together or take a trip together.
When we walked up the ramp to the doctor's appointment she said, "I'm getting so frail." So, she realizes that. I felt a tug at my heart. Inside the exam room while we waited for Dr. Getzinger she said, "I want another dog but they won't let me have one."
We've talked about that time and time again. "I don't think you can take care of a dog."
"I took care of Josh. He was no trouble."
"You got Josh before the Alzheimer's, Mom. There's a lot of work to taking care of and training a puppy. I just don't think it's a good idea. You have trouble taking care of yourself."
"I can take care of a dog."
Ten minutes ago she was talking about how frail she's getting.
Dad's having trouble with his COPD. He told her the way things are going, she won't have to worry about him much longer. She still knows that Dad is the only reason she is still living at home, the home she's lived in for 50 years. She knows if he dies first, she will have to come and live with me. Dad is working so hard to keep himself going so they can both live out their lives independently.
I remember a couple of years ago when I went to Florida with Maureen. There was a story in the newspaper there of a firecall. Of the firefighters who needed to speak with a counselor when they watched the elderly couple inside that vehicle burn up because the driver had locked the car, set it on fire and refused to unlock the doors.
It sounded to me like the man had driven his wife to the beach so they could watch the tide. Maybe it was their favorite place, someplace that they had shared many times. Maybe the lost look in her eyes was the Alzheimer's at full-blown pitch. Maybe he worried what would happen to her if he died first and he just couldn't handle that thought.
We all need to live just for today. Because today is all that we really have. And every today after this one.
Saturday, April 21, 2007
Spring...and thoughts turn to...
Joyce sent me an e-mail: "I saw this and thought of you." "This" was the submission guidelines for the Cup of Comfort anthology about Alzheimer's. I decided on the spot that I need to write about it, especially when I began to write my response to her. Yes. I have to submit, even if it isn't accepted. I'm not sure what it pays, but a lot of folks will probably buy that anthology because there is so much AD.
Late March saw a wonderful couple of weeks of nice, warm weather. I am sure I'm not the only one who knew it was too early to expect that weather to stay. And, it didn't. But yesterday the thermometer rose to the low 70s again after three weeks or so of wind and snow and rain. And the same forecast of warm weather holds through the entire weekend and into the the new week. I'll take it!!!
My home office is a small room just off of the master bedroom. There is a window behind my desk that allows the light to wash this room. I can see the broad expanse that is the sky. It's blue and cloudless this morning. And the sun, rising in the east, is casting it's welcome warmth and brightness against the homes and garages and gardens. It's a feel good kind of day. One of those days when I feel carefree and energetic...and hope that I shouldn't be looking over my shoulder for another shoe to drop. Seems like a day that I should get Mom outdoors for a walk, and putter around in the flower beds.
Late March saw a wonderful couple of weeks of nice, warm weather. I am sure I'm not the only one who knew it was too early to expect that weather to stay. And, it didn't. But yesterday the thermometer rose to the low 70s again after three weeks or so of wind and snow and rain. And the same forecast of warm weather holds through the entire weekend and into the the new week. I'll take it!!!
My home office is a small room just off of the master bedroom. There is a window behind my desk that allows the light to wash this room. I can see the broad expanse that is the sky. It's blue and cloudless this morning. And the sun, rising in the east, is casting it's welcome warmth and brightness against the homes and garages and gardens. It's a feel good kind of day. One of those days when I feel carefree and energetic...and hope that I shouldn't be looking over my shoulder for another shoe to drop. Seems like a day that I should get Mom outdoors for a walk, and putter around in the flower beds.
Tuesday, April 17, 2007
I love you, Honey
Every time I hug my mom she says, "I love you, Honey. I wouldn't trade you for anything."
Sometimes I wonder what is going through her mind when I walk out the door to return to my home. Her diagnosis was five years ago. But she remembers things that I didn't expect her to remember at this stage of the game. I attribute that to the medication she takes, Namenda. It may not work for everyone, but it has slowed down the progression of the AD.
Guilt manages to overtake me at moments like this when I know I was busy taking care of things at my house, writing that article I had to get finished for my employer, the article for my senior living web site, and the general daily tasks that a wife and mother has to do. I still feel like I should be popping in daily to make sure everything is OK.
"You can't be here all the time," Dad says. "You have your own life to live."
My youngest brother says, "You can't put your life on hold to take care of Mom and Dad." But if I don't, who will take care of things? Who will make sure that the medications are dispensed properly? Who will see that they are OK, getting their bills paid on time, that they eat nutritionally sound meals?
I've determined that I should just take one day at a time. Sometimes one minute at a time. That I should just do what I can each day and forgive myself for my shortcomings. If I'm doing the best that I can, the best I know how, what more is there?
I love you, Mom. I wouldn't trade you, either. You've always been there when I needed you. How can I do anything less for you?
Sometimes I wonder what is going through her mind when I walk out the door to return to my home. Her diagnosis was five years ago. But she remembers things that I didn't expect her to remember at this stage of the game. I attribute that to the medication she takes, Namenda. It may not work for everyone, but it has slowed down the progression of the AD.
Guilt manages to overtake me at moments like this when I know I was busy taking care of things at my house, writing that article I had to get finished for my employer, the article for my senior living web site, and the general daily tasks that a wife and mother has to do. I still feel like I should be popping in daily to make sure everything is OK.
"You can't be here all the time," Dad says. "You have your own life to live."
My youngest brother says, "You can't put your life on hold to take care of Mom and Dad." But if I don't, who will take care of things? Who will make sure that the medications are dispensed properly? Who will see that they are OK, getting their bills paid on time, that they eat nutritionally sound meals?
I've determined that I should just take one day at a time. Sometimes one minute at a time. That I should just do what I can each day and forgive myself for my shortcomings. If I'm doing the best that I can, the best I know how, what more is there?
I love you, Mom. I wouldn't trade you, either. You've always been there when I needed you. How can I do anything less for you?
Wednesday, April 4, 2007
When the day looks gray
Yesterday the world was filled with color and thermometers soared to 80 degrees. Hearts were light and all was well with the world. Today...where did all of the color go?
That is a metaphor. I recall the wonderful, warm memories of my youth and motherhood...and daughterhood...womanhood. I look from this special place to my mother and the direction my life is still taking. I look from this special place to my daughters and the direction each of their lives is taking. I've decided to just live for each day. Have some long-range goals and hold onto the dreams, but just take one day at a time. I want to live each day to the fullest, just like the song...Live Like You Were Dyin'.
Mom cried when I visited her early this week. She hates what is happening to her. She remembers her doctor saying to her, "You used to have such a good brain." She has fixated on that statement and it haunts her. And I think, as smart as her doctor is, sometimes he says stupid things that would be better left unspoken.
She still crochets. I told her long ago, as long as she is crocheting I don't have to worry about her. Dad has often complained about the hours she spends crocheting. And I've told him countless times to let her do it. If it helps to keep her brain alive, it is a good thing. A year ago she was still crocheting complicated advanced patterns. She makes attempts now, but spends hours tearing out and crocheting again to complete the projects. Now she is working on a design of her own made with the simple granny square.
What I know is that she and Dad are not going to be able to live alone for much longer. I think it's time for DH and I to consider moving in with them so they can stay in their home. Dad is trying valiantly to handle everything, but he isn't getting any younger, either. He needs some help.
A couple of friends keep telling me I shouldn't have to take care of my parents. I don't understand. My parents struggled through difficult financial times to take care of us. My mother lost sleep at night when we were sick. My parents have always been there for me when I needed them. Do I have a lesser obligation than they did? How many times did Mom say, "Let me help you now because the day will come when I'll need you to help me"? And don't I want my children to have the same compassion for me? Then I owe compassion to these two special people who brought me into this world, have loved me unselfishly for so long.
It's a gray day in Northeast Ohio. If the sunshine doesn't return on its own, I may have to get out my paint and brushes and put color back into the world around me.
There's a metaphor in that statement, too.
That is a metaphor. I recall the wonderful, warm memories of my youth and motherhood...and daughterhood...womanhood. I look from this special place to my mother and the direction my life is still taking. I look from this special place to my daughters and the direction each of their lives is taking. I've decided to just live for each day. Have some long-range goals and hold onto the dreams, but just take one day at a time. I want to live each day to the fullest, just like the song...Live Like You Were Dyin'.
Mom cried when I visited her early this week. She hates what is happening to her. She remembers her doctor saying to her, "You used to have such a good brain." She has fixated on that statement and it haunts her. And I think, as smart as her doctor is, sometimes he says stupid things that would be better left unspoken.
She still crochets. I told her long ago, as long as she is crocheting I don't have to worry about her. Dad has often complained about the hours she spends crocheting. And I've told him countless times to let her do it. If it helps to keep her brain alive, it is a good thing. A year ago she was still crocheting complicated advanced patterns. She makes attempts now, but spends hours tearing out and crocheting again to complete the projects. Now she is working on a design of her own made with the simple granny square.
What I know is that she and Dad are not going to be able to live alone for much longer. I think it's time for DH and I to consider moving in with them so they can stay in their home. Dad is trying valiantly to handle everything, but he isn't getting any younger, either. He needs some help.
A couple of friends keep telling me I shouldn't have to take care of my parents. I don't understand. My parents struggled through difficult financial times to take care of us. My mother lost sleep at night when we were sick. My parents have always been there for me when I needed them. Do I have a lesser obligation than they did? How many times did Mom say, "Let me help you now because the day will come when I'll need you to help me"? And don't I want my children to have the same compassion for me? Then I owe compassion to these two special people who brought me into this world, have loved me unselfishly for so long.
It's a gray day in Northeast Ohio. If the sunshine doesn't return on its own, I may have to get out my paint and brushes and put color back into the world around me.
There's a metaphor in that statement, too.
Friday, March 23, 2007
Rainy daze
It's amazing how there is no color in the world when clouds obscure the sun. One can board a jet in a colorless world, then take off through the clouds to sunlight above them. The sun is always there. We just don't always see it.
It's a rainy day in no, not Georgia. Well, it may be raining in Georgia, but it's also a rainy day in Northeast Ohio, at least in our little town, the heart of the county. I heard birdsong in mid-to-late February. I recognized the robin's song as soon as I heard it and it gave me hope that spring would not be long in arriving. And I've been pretty ticked off at Punxy Phil. He lied!
I had to be out running a couple of days ago, so I stopped to visit my parents for a few...I'm never sure if I'll be there for a few minutes or a few hours. I hate to just drop in, visit a few minutes, and be on my way again. But sometimes that's how it is. I think even the few minutes are good for my parents and good for me.
We were talking. I looked at Dad and said, "I'm a workaholic!"
He looked back at me. "I know what you're saying."
I used to give him a terrible time about always working. It was like he was driven to work as much as he could to make as much money as he could. He didn't do bad for someone with only an 8th grade education. He was a crane operator for a tire manufacturing concern, NRM Corporation, for many years. When I started working in the shipping/receiving department in 1972, he put a bid in for the truck driver position and got it. It was nothing for him to work 7 a.m. to 10 or 11 at night. We never knew if he was going to be home for supper or not. So, I gave him some static. Not a lot. I was afraid to say much. We'll just say I had a healthy respect for my parents and rarely talked back. I just knew Mom wouldn't tolerate mouthy disrespect. And I loved her too much to want to be a disappointment to her.
So, yes, when I admitted that I'm a workaholic, I wasn't surprised that Dad knew exactly what I was talking about. And maybe it told him that I understood exactly what he was talking about the day I said, "I am going to quit my job and stay home full time."
"What are you going to do with all of your time?" he asked. "Are you going to be able to keep busy?"
Workaholics, from my POV (that's writerly for 'point of view'), are people who are so driven to take care of responsibilities, particularly the financial ones, that they don't know how to relax, take a breath and actually breathe, to stop and smell the roses or to sit down and enjoy a movie, a tv show, a cookout with the family, an afternoon sitting lakeside while the spouse tosses a line in the water.
Mom piped up, "You are a workaholic."
I was surprised. And I have to chuckle at that. My parents keep telling me they don't want to bother me because I'm so busy. And I keep telling them that I'll always have busy work because I can't sit still without something to do--crocheting, reading, and especially writing. But I can always set my busywork aside for things that are more important, like talking to my children, going to a hamburger joint and a movie with a grandchild, visiting with my parents, helping my parents, and anything else I want to do.
Mom...I'm so blessed to have her. Our family is so blessed that the AD is progressing so slowly. It's five years since her heart-breaking diagnosis. And nearly three years since the doctor prescribed Namenda. I don't know what's in the Namenda, but it's a miracle for my mom. She keeps saying, "My brain is so dead," and it's true that she isn't as sharp-minded as she once was. Sometimes what she says isn't exactly right...can be totally wrong...but she's still Mom and she still has wisdom and knowledge that I value. And sometimes she is still right on the money. The difficulty is in being able to tell which is which.
When I pray before I go to sleep, I ask God to take care of her. I ask Him not to let the AD totally take control of her. And I trust Him to take care of her, not to let the AD take total control of her. That she'll always recognize us. And always know how much we love her.
Yeah. It's a rainy day in Northeast Ohio. And rainy days always turn my thoughts to philosophy of life. Deep thinking. But if the sun doesn't come back out soon I'm gonna have to turn on all the lights and simulate sunshine.
It's a rainy day in no, not Georgia. Well, it may be raining in Georgia, but it's also a rainy day in Northeast Ohio, at least in our little town, the heart of the county. I heard birdsong in mid-to-late February. I recognized the robin's song as soon as I heard it and it gave me hope that spring would not be long in arriving. And I've been pretty ticked off at Punxy Phil. He lied!
I had to be out running a couple of days ago, so I stopped to visit my parents for a few...I'm never sure if I'll be there for a few minutes or a few hours. I hate to just drop in, visit a few minutes, and be on my way again. But sometimes that's how it is. I think even the few minutes are good for my parents and good for me.
We were talking. I looked at Dad and said, "I'm a workaholic!"
He looked back at me. "I know what you're saying."
I used to give him a terrible time about always working. It was like he was driven to work as much as he could to make as much money as he could. He didn't do bad for someone with only an 8th grade education. He was a crane operator for a tire manufacturing concern, NRM Corporation, for many years. When I started working in the shipping/receiving department in 1972, he put a bid in for the truck driver position and got it. It was nothing for him to work 7 a.m. to 10 or 11 at night. We never knew if he was going to be home for supper or not. So, I gave him some static. Not a lot. I was afraid to say much. We'll just say I had a healthy respect for my parents and rarely talked back. I just knew Mom wouldn't tolerate mouthy disrespect. And I loved her too much to want to be a disappointment to her.
So, yes, when I admitted that I'm a workaholic, I wasn't surprised that Dad knew exactly what I was talking about. And maybe it told him that I understood exactly what he was talking about the day I said, "I am going to quit my job and stay home full time."
"What are you going to do with all of your time?" he asked. "Are you going to be able to keep busy?"
Workaholics, from my POV (that's writerly for 'point of view'), are people who are so driven to take care of responsibilities, particularly the financial ones, that they don't know how to relax, take a breath and actually breathe, to stop and smell the roses or to sit down and enjoy a movie, a tv show, a cookout with the family, an afternoon sitting lakeside while the spouse tosses a line in the water.
Mom piped up, "You are a workaholic."
I was surprised. And I have to chuckle at that. My parents keep telling me they don't want to bother me because I'm so busy. And I keep telling them that I'll always have busy work because I can't sit still without something to do--crocheting, reading, and especially writing. But I can always set my busywork aside for things that are more important, like talking to my children, going to a hamburger joint and a movie with a grandchild, visiting with my parents, helping my parents, and anything else I want to do.
Mom...I'm so blessed to have her. Our family is so blessed that the AD is progressing so slowly. It's five years since her heart-breaking diagnosis. And nearly three years since the doctor prescribed Namenda. I don't know what's in the Namenda, but it's a miracle for my mom. She keeps saying, "My brain is so dead," and it's true that she isn't as sharp-minded as she once was. Sometimes what she says isn't exactly right...can be totally wrong...but she's still Mom and she still has wisdom and knowledge that I value. And sometimes she is still right on the money. The difficulty is in being able to tell which is which.
When I pray before I go to sleep, I ask God to take care of her. I ask Him not to let the AD totally take control of her. And I trust Him to take care of her, not to let the AD take total control of her. That she'll always recognize us. And always know how much we love her.
Yeah. It's a rainy day in Northeast Ohio. And rainy days always turn my thoughts to philosophy of life. Deep thinking. But if the sun doesn't come back out soon I'm gonna have to turn on all the lights and simulate sunshine.
Wednesday, March 21, 2007
Another over the hump day
The over-the-hump days come so rapidly these days. The weeks are flying. It's March 21, the first day of spring. The first quarter of 2007 is nearly done.
I remember when I was a child the weeks seemed to drag out for so impossibly long times. But those days probably ticked off as rapidly for older folks then as they do for me now. Must be because I'm so "busy."
Mom and Dad say they don't call me because they know I'm "busy." I keep telling them I'll always have "busy" work to keep my hands "busy." But the thing about busy work is that it can be set aside when I have something important to do...like helping my parents when they need me. They don't call very often. And I'm going to start inviting them to dinner at our house at least once a week. They came for birthday cake last week when the twins turned 20. My babies. Who grew up way too fast. In fact, I can't figure out how time flew so quickly.
Anyway, my parents came for birthday cake for the girls, and they were so tickled to be here. So I'll have them to dinner a couple of times a week. With warmer weather coming, I want to cook out on the grill. Looks like we'll be able to afford to fill the propane tank for the grill this spring. YES! I think we'll use the patio a lot this year. Hm. We'll need a new picnic table, too.
The days don't drift. They fly by. We need to take advantage of the time we have while we have it because the day will come when time runs out and Mom and Dad will be gone. We won't be able to go back and retrieve it. I don't want to wait until they are gone to appreciate them.
Besides, Mom perks up when she has visits with family. I think that helps her.
Onward with the day.
I remember when I was a child the weeks seemed to drag out for so impossibly long times. But those days probably ticked off as rapidly for older folks then as they do for me now. Must be because I'm so "busy."
Mom and Dad say they don't call me because they know I'm "busy." I keep telling them I'll always have "busy" work to keep my hands "busy." But the thing about busy work is that it can be set aside when I have something important to do...like helping my parents when they need me. They don't call very often. And I'm going to start inviting them to dinner at our house at least once a week. They came for birthday cake last week when the twins turned 20. My babies. Who grew up way too fast. In fact, I can't figure out how time flew so quickly.
Anyway, my parents came for birthday cake for the girls, and they were so tickled to be here. So I'll have them to dinner a couple of times a week. With warmer weather coming, I want to cook out on the grill. Looks like we'll be able to afford to fill the propane tank for the grill this spring. YES! I think we'll use the patio a lot this year. Hm. We'll need a new picnic table, too.
The days don't drift. They fly by. We need to take advantage of the time we have while we have it because the day will come when time runs out and Mom and Dad will be gone. We won't be able to go back and retrieve it. I don't want to wait until they are gone to appreciate them.
Besides, Mom perks up when she has visits with family. I think that helps her.
Onward with the day.
Tuesday, March 20, 2007
What do you do?
When you learn that a loved one, say your mom, has Alzheimer's, what do you do?
First, you cry. It's so hard to think about the person you admire so much is going to slowly slip away from you without dying. The shell will still be there and even if she does say, "When I don't know you any more, don't come to visit. I'll be gone."
Wow. Mom said that to me once. And it was from the heart. Sometimes when she says things I know it's not really what she means. But she meant that one. I don't think I can ever stop going to see her, though. No. My prayers are that God will not let her be completely taken over by Alzheimer's, that He'll let her stay where she is at this moment of the disease's progression until the day she dies. That it will never completely rob us of her.
My brothers wanted to deny that AD had entered the picture. I accepted it pretty quickly because I had to accept it in order to start looking for ways to help her, to slow down the progression, prevent it if I could, but to embrace it and look for answers, to be there for her with knowledge that could help her. There was no time to lose, especially as I looked back and saw all the red flags we had missed early on. They were there...but the changes were so gradual, so subtle. Unnoticeable until we looked back.
My knee-jerk reaction was that I had to step in immediately and take over the handling of Mom and Dad's affairs. It wasn't that I was trying to be controlling and bossy. It was that I wanted to help them. Mom wanted to stay independent, to live in their house until she dies. I thought I had to immediately get to work to make that happen. It took awhile for me to understand that they will ask for help when they need me. They will accept help when I offer it at the times that I can plainly see that they need me.
That's another thing. I have to be so alert to their words, their expressions, the look in Mom's eyes when she doesn't want to admit that she needs help. And when I'm not there all the time, when days pass before I go back to visit, I lose touch and don't know what they need. And they feel like I've abandoned them. I don't know how to take care of things at my home and their home at the same time. I don't know how to be everywhere at once.
Is that why I've taken to hiding away in my office? Away from everyone and everything? Why doesn't anyone understand what I need? If I go to my parents' house, I neglect things that need to be done at my house. If I stay home, I am not around when they need me and they don't want to bother me because I "have so much on your plate." And if someone else needs something from me, I feel that much more stress and guilt because I can't cover all the bases and I have no one willing to take up my slack.
But they don't want to move to my house. And their house isn't big enough for us to move there. Maybe next year when one daughter is living at the college and the other is married and the newlyweds can live here with the dogs and cats and DH and I can live with my parents. I don't know.
What do you do? You take one day at a time. You do the best you can with today. And all the todays after this one.
First, you cry. It's so hard to think about the person you admire so much is going to slowly slip away from you without dying. The shell will still be there and even if she does say, "When I don't know you any more, don't come to visit. I'll be gone."
Wow. Mom said that to me once. And it was from the heart. Sometimes when she says things I know it's not really what she means. But she meant that one. I don't think I can ever stop going to see her, though. No. My prayers are that God will not let her be completely taken over by Alzheimer's, that He'll let her stay where she is at this moment of the disease's progression until the day she dies. That it will never completely rob us of her.
My brothers wanted to deny that AD had entered the picture. I accepted it pretty quickly because I had to accept it in order to start looking for ways to help her, to slow down the progression, prevent it if I could, but to embrace it and look for answers, to be there for her with knowledge that could help her. There was no time to lose, especially as I looked back and saw all the red flags we had missed early on. They were there...but the changes were so gradual, so subtle. Unnoticeable until we looked back.
My knee-jerk reaction was that I had to step in immediately and take over the handling of Mom and Dad's affairs. It wasn't that I was trying to be controlling and bossy. It was that I wanted to help them. Mom wanted to stay independent, to live in their house until she dies. I thought I had to immediately get to work to make that happen. It took awhile for me to understand that they will ask for help when they need me. They will accept help when I offer it at the times that I can plainly see that they need me.
That's another thing. I have to be so alert to their words, their expressions, the look in Mom's eyes when she doesn't want to admit that she needs help. And when I'm not there all the time, when days pass before I go back to visit, I lose touch and don't know what they need. And they feel like I've abandoned them. I don't know how to take care of things at my home and their home at the same time. I don't know how to be everywhere at once.
Is that why I've taken to hiding away in my office? Away from everyone and everything? Why doesn't anyone understand what I need? If I go to my parents' house, I neglect things that need to be done at my house. If I stay home, I am not around when they need me and they don't want to bother me because I "have so much on your plate." And if someone else needs something from me, I feel that much more stress and guilt because I can't cover all the bases and I have no one willing to take up my slack.
But they don't want to move to my house. And their house isn't big enough for us to move there. Maybe next year when one daughter is living at the college and the other is married and the newlyweds can live here with the dogs and cats and DH and I can live with my parents. I don't know.
What do you do? You take one day at a time. You do the best you can with today. And all the todays after this one.
Monday, March 19, 2007
New week, new day, new blog
I had a blog about Alzheimer's. I think I deleted it. No, I don't have AD, but my mother does. My objective is not to violate her privacy, but to share with others the AD experience because it's different for everyone. Which is why I deleted the other blog...if I deleted it. I can't find it anywhere.
AD...I remember a sunny day in March several years ago. I remember Mom called me and said her doctor wanted to talk to me. He wanted to talk to me because he had diagnosed Mom with Alzheimer's. I remember being stunned. Oh, it didn't affect me too much at first. It's so easy to think, "She just misunderstood something he said. It can't happen to my mom." But later, every time I sat down at my computer to write, I would freeze, think about my mother's diagnosis and the tears would fall.
My siblings didn't believe it. They were in denial for a LONG time. One still insisted at Thanksgiving 2006, "I don't believe Mom has Alzheimer's." The other said, "Take a good look at her. You're talking about things she's saying to you. Is that normal for her?" "No." "That's the Alzheimer's."
It breaks my heart to see someone I grew up admiring, respecting...she was so sharp-minded. Nobody could pull anything on her. She was always at the top of her game. Now, even she will say, "I hate my brain. It doesn't work right. It's dying. I can see that it is."
Well, I don't know if I can share everything here. But I will share what I can without violating privacy of others. What I know for sure is that I don't want my mother to slip away from us. Hummingbird, don't fly away!
AD...I remember a sunny day in March several years ago. I remember Mom called me and said her doctor wanted to talk to me. He wanted to talk to me because he had diagnosed Mom with Alzheimer's. I remember being stunned. Oh, it didn't affect me too much at first. It's so easy to think, "She just misunderstood something he said. It can't happen to my mom." But later, every time I sat down at my computer to write, I would freeze, think about my mother's diagnosis and the tears would fall.
My siblings didn't believe it. They were in denial for a LONG time. One still insisted at Thanksgiving 2006, "I don't believe Mom has Alzheimer's." The other said, "Take a good look at her. You're talking about things she's saying to you. Is that normal for her?" "No." "That's the Alzheimer's."
It breaks my heart to see someone I grew up admiring, respecting...she was so sharp-minded. Nobody could pull anything on her. She was always at the top of her game. Now, even she will say, "I hate my brain. It doesn't work right. It's dying. I can see that it is."
Well, I don't know if I can share everything here. But I will share what I can without violating privacy of others. What I know for sure is that I don't want my mother to slip away from us. Hummingbird, don't fly away!
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