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
Wednesday, May 27, 2009
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.
Monday, August 20, 2007
She used to worry...
...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.
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.
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.
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