Wow, I can't believe I haven't written anything since September. Aside from the standard excuses...school's back in session, we got a dog (major excuse!), busy at work, blah, blah, blah,
the bottom line is that I just haven't felt like doing much of anything creative. I feel like my mind is paralyzed in the routine and the need to focus on immediate tasks. I just can't find any quiet time to reflect.
OK, now that I've gotten that out of my system...
The holidays were a bitch, to put it bluntly. Although they seemed calmer than usual, it was difficult celebrating the first one without my mom. She was always so into Christmas, and it just wasn't the same without her. Dad had a rough time, too. His birthday was in October, and I was surprised that it upset him to have a birthday without mom, though I don't know why I should be surprised. Thanksgiving and Christmas, yes, but it never connected that a birthday would drudge up the same feelings of void.
Right after Thanksgiving, I was trying to figure out how to make Dad's life less depressing over the Christmas season. To help him feel connected, I went to his old house (where he lived with my mom) and got all the Christmas decorations that I could find, which fit in a medium sized bin. Where's all their "stuff"? Mom and Dad were not into all the trappings of holidays, which is not surprising, as it fits the way they lived life.
Anyway, Dad and Judy had a great time decorating the house. They went thrifting and to Best Buy and came home with lots of cute and kitchy Christmas items...miniature figurines, trees and houses (not all to scale), which they put on a white blanket of cotton; a 3 foot high funky Christmas tree for the front porch that looks like it's out of How the Grinch Stole Christmas (the newer one); and, lots of ornaments. They went to the Christmas Tree farm and bought a nice (real!) tree, which turned out to be a major task for them to put up. Once it was finally secured, they decorated it with ornaments, lights, and LOTS of tinsel. Dad thought it was beautiful, and it was.
Actually, Dad made it through the holidays better than I expected. I think it kept him busy. He continued with his obsessiveness, sitting for hours on end revising and adding to his rolodex collection (it's his way of remembering things...a need for control). Judy took him out to buy gifts for everyone, which he enjoyed. He's so different than he was with Mom. He does so many more things...like gifting, eating tacos, chicken wings and pizza, playing Bingo...sometimes I wonder if it's the Alzheimer's and the influence of the caregiver, or if he just followed Mom's lead. She was kind of controlling, too. I don't know how they made it through 63 years of marriage!
Carol, Todd and Stephanie came over on Christmas Eve and we celebrated at Dad's house with lunch (lasagna) and opening gifts. It was really nice, except that I found out that Dad hated the hat I gave him and threw it away! Judy retrieved it from the trash, and he threw it away again and never made it out of the garbage. Well! Apparently, he's done that with several gifts, and I can't figure it out! Why doesn't he give them to Goodwill or something? I remember one time Mom said he kept throwing out her favorite pair of shoes, her huraches (sandals from Mexico). She'd get them out of the trash, and he'd throw them away again! Gotta watch that guy!
The new year was uneventful for Dad, but I think it was harder to get through the passing of the year without Mom. I was very down. It seemed like I was leaving her behind. Now it's just 3 months until the anniversary of her death. Dad was so depressed and cried all the time. He's so lonely. He wants a new wife, but I just don't see it happening.
More to say, but I'll write another entry later. This one's long enough~
Saturday, January 23, 2010
Saturday, September 12, 2009
News Bites (or Bytes)
Here are some really interesting Alzheimer's news bites I was reading on Facebook's Medical News "feed":
The website for non-facebook-ers is http://www.medicalnewstoday.com/. Look in Alzheimer's/Dementia category
- Being a member of a social group can reduce risk of conditions like stroke, DEMENTIA, and even the common cold.
- Infections may hasten memory loss in Alzheimer's.
- Eating curry every week could prevent dementia by prevent spread of plaques in the brain. Plaques and tangles in the brain are characteristics of Alzheimer's disease...they prevent transmission of information between brain cells.
Another blog I read, "Had a Dad", noted that World Alzheimer's Day is 9/21. Purple is the color worn to show support for those with Alzheimer's. There are Memory Walks across the US to raise awareness and money for research...the website for information is www.actionalz.org/overview.asp .
There is a clinical trial being started for a new drug, Dimebon, which may actually reverse Alzheimer's. To be in it, the patient must be taking Aricept.
Here's the link to the clinical trial site: http://www.concertstudy.com/.
The site also has some other information on Alzheimer's.
News on Dad:
He still seems to be doing well, although his new caregiver, Judy, said he has been missing my mom alot. He gets kind of upset if I don't call or go over there every day, which I don't like because it makes me feel pressured and irritated. It's like they say...no one can make you feel (angry, guilty, sad,...insert yours here) unless you let them. Dad called today and asked me to make him a copy of the key to the front door. Carol, my sister, suggested I tell him he sleepwalks, so he can't have a key. I'll tell him to get the caregiver if he wants to go out to get the paper in the morning (after 7:00!). I can tell it's going to get ugly sooner or later.
Janice got him to go outside with her to trim the bushes. Yay! He used to love working in the yard. I also think he feels a sense of accomplishment when he is able to help with jobs around the house.
Things are going well. No major new issues.
The website for non-facebook-ers is http://www.medicalnewstoday.com/. Look in Alzheimer's/Dementia category
- Being a member of a social group can reduce risk of conditions like stroke, DEMENTIA, and even the common cold.
- Infections may hasten memory loss in Alzheimer's.
- Eating curry every week could prevent dementia by prevent spread of plaques in the brain. Plaques and tangles in the brain are characteristics of Alzheimer's disease...they prevent transmission of information between brain cells.
Another blog I read, "Had a Dad", noted that World Alzheimer's Day is 9/21. Purple is the color worn to show support for those with Alzheimer's. There are Memory Walks across the US to raise awareness and money for research...the website for information is www.actionalz.org/overview.asp .
There is a clinical trial being started for a new drug, Dimebon, which may actually reverse Alzheimer's. To be in it, the patient must be taking Aricept.
Here's the link to the clinical trial site: http://www.concertstudy.com/.
The site also has some other information on Alzheimer's.
News on Dad:
He still seems to be doing well, although his new caregiver, Judy, said he has been missing my mom alot. He gets kind of upset if I don't call or go over there every day, which I don't like because it makes me feel pressured and irritated. It's like they say...no one can make you feel (angry, guilty, sad,...insert yours here) unless you let them. Dad called today and asked me to make him a copy of the key to the front door. Carol, my sister, suggested I tell him he sleepwalks, so he can't have a key. I'll tell him to get the caregiver if he wants to go out to get the paper in the morning (after 7:00!). I can tell it's going to get ugly sooner or later.
Janice got him to go outside with her to trim the bushes. Yay! He used to love working in the yard. I also think he feels a sense of accomplishment when he is able to help with jobs around the house.
Things are going well. No major new issues.
Wednesday, September 9, 2009
Never Assume they Can't!
Today I found a wonderful list of "rules" to help caregivers help people with Alzheimer's. It was written by Jo Huey in her 1996 book Help and Hope (available at www.alzheimersinstitutellc.com).
10 Absolutes for Alzheimer's Caregivers
1. Never Argue.......Instead, Agree
2. Never Reason........Instead, Divert
3. Never Shame ........Instead, Distract
4. Never Lecture........Instead, Reassure
5. Never say "Remember".......Instead, Reminisce
6. Never say "I Told You"....Instead, Repeat and Regroup
7. Never say "You Can't"..........Instead, do what they CAN
8. Never Command/Demand....Instead, Ask/Model
9. Never Condescend..........Instead, Encourage/Praise
10. Never Enforce........Instead, Reinforce
I'm going to post this on my mirror (refrigerator, wall, bulletin board, or whatever!)!
Yesterday, I dropped by Dad's house to see how he was...He was in such a great mood! He was laughing and smiling and joking around. It was so uplifting to see him so happy.We needed to have Dad's power service switched into his name, so I offered to help him. I dialed the number and spoke with the man with the power company, explaining what we needed. They needed to speak with Dad to confirm that this is what he wanted, yada yada. I expected to just hand Dad the phone for him to say "whatever she says", as usual, but he kept talking, answering the questions himself! He did have to ask what some of the answers were, but he wanted to do it himself. At one point, he was put on hold. He looked up, laughed, and asked, "what am I doing again?". I had to leave before the phone call was completed, but Dad's caregiver said he finished it and got the power connected by himself!
When I got home, it really hit me that I need to let him do things by himself, unless he wants help. By jumping in and doing everything for him, I'm giving the message that he can't do it. I think it was good for his self-confidence and self-esteem to complete the call himself.
Lesson: A variation on Absolute #7:
Never Assume they Can't...Help them succeed at what they CAN
After the visit, I told his caregiver that Dad seemed happier than I'd seen him in a long time. She said he's been so much fun the past few days, joking and laughing. Apparently, the medication the doctor gave him to sleep is working amazingly well, and he's sleeping like a baby (Why do people say that? Babies don't sleep that well!). I really think that's one reason he's in such a great mood...he's not dead-tired!
This has been one of the Good Days! Praise God!
Sunday, September 6, 2009
Good days, Bad days
Who doesn't have 'em?
Dad was having an especially confused day recently, and I asked his caregiver if she had noticed it. Of course, she had. Having worked with Alzheimer's patients (what do you call them...sufferers, or what?), she said that he will have good days and bad days, progressing to good weeks and bad weeks, and downhill from there. This particularly bad day may have been the effects from medication he was prescribed to help his obsessive behavior and to help him sleep. His caregiver said she doesn't like that medication - Seraquil - because it made her previous patient really out of it. It didn't even help him sleep. He must have a really high tolerance for medication. The doctor also prescribed medication especially for insomnia, but it could be habit forming. What to do?
The man doesn't sleep. He stays up obsessing about his checkbook, his car registration being out of date, not having a key for the doors (he actually tried to pry the door open with his pocket-knive...yikes!), his lost alarm clock, or some such important thing.
After obsessing about where his car was, we finally let him have it, with the condition that he not drive without someone in the car. Funny thing is, now that he has it, he just looks in the garage to make sure it's there and doesn't even want to drive it. Sometimes, he even asks whose car it is. I think it's a control issue. He's always been a control freak, which is not a positive thing except that he was a surgeon.
My sister told me today that the man from the Alzheimer's Association that she spoke with after my mom died (and we realized that Dad had a good case of Alzheimer's going ) called to find out how things are going. I'm really impressed that he followed up. She told him about Dad asking his caregivers and others if they would come have sex with him for money. He said that he tells caregivers whom he talks with that if they haven't been propositioned at least once, their patient doesn't have Alzheimer's! Phew! Also, people with Alzheimer's often combine stories or situations from different periods of their lives. For instance, my Dad was a pilot in WWII. Later in life, he practiced medicine in Alaska for doctors who were on vacation for long periods. He now says he worked in Alaska and flew planes from island to island helping sick people.
It's really hard visiting with Dad. He just doesn't have anything to say. He has trouble remembering words and is getting frustrated with his loss of memory. This must be the hardest period for people with Alzheimer's. They know enough to know they're losing it. I just have to ask him questions, and when he tells me the same thing for the 10th time, I just act really interested and engage him in the story.
On a personal note, I really feel for family members who have to care for their Alzheimer's relatives. Just working with my dad is emotionally exhausting...I often go home and cry. It takes a special personality with extreme patience to care for them full-time. It just seems to engulf my world and I don't get anything else done. I'm making mistakes at work, can't seem to get caught up with everything at home (or at least keep up), and I am feeling overwhelmed. Waahhhh!
On a positive note, my family is very understanding, and my Dad is very sweet and gentle. He can get testy and sarcastic, but at least he's not abusive.
I wish I could find matches for all the single socks in the laundry room.
...that's the good, the bad and the ugly update
Dad was having an especially confused day recently, and I asked his caregiver if she had noticed it. Of course, she had. Having worked with Alzheimer's patients (what do you call them...sufferers, or what?), she said that he will have good days and bad days, progressing to good weeks and bad weeks, and downhill from there. This particularly bad day may have been the effects from medication he was prescribed to help his obsessive behavior and to help him sleep. His caregiver said she doesn't like that medication - Seraquil - because it made her previous patient really out of it. It didn't even help him sleep. He must have a really high tolerance for medication. The doctor also prescribed medication especially for insomnia, but it could be habit forming. What to do?
The man doesn't sleep. He stays up obsessing about his checkbook, his car registration being out of date, not having a key for the doors (he actually tried to pry the door open with his pocket-knive...yikes!), his lost alarm clock, or some such important thing.
After obsessing about where his car was, we finally let him have it, with the condition that he not drive without someone in the car. Funny thing is, now that he has it, he just looks in the garage to make sure it's there and doesn't even want to drive it. Sometimes, he even asks whose car it is. I think it's a control issue. He's always been a control freak, which is not a positive thing except that he was a surgeon.
My sister told me today that the man from the Alzheimer's Association that she spoke with after my mom died (and we realized that Dad had a good case of Alzheimer's going ) called to find out how things are going. I'm really impressed that he followed up. She told him about Dad asking his caregivers and others if they would come have sex with him for money. He said that he tells caregivers whom he talks with that if they haven't been propositioned at least once, their patient doesn't have Alzheimer's! Phew! Also, people with Alzheimer's often combine stories or situations from different periods of their lives. For instance, my Dad was a pilot in WWII. Later in life, he practiced medicine in Alaska for doctors who were on vacation for long periods. He now says he worked in Alaska and flew planes from island to island helping sick people.
It's really hard visiting with Dad. He just doesn't have anything to say. He has trouble remembering words and is getting frustrated with his loss of memory. This must be the hardest period for people with Alzheimer's. They know enough to know they're losing it. I just have to ask him questions, and when he tells me the same thing for the 10th time, I just act really interested and engage him in the story.
On a personal note, I really feel for family members who have to care for their Alzheimer's relatives. Just working with my dad is emotionally exhausting...I often go home and cry. It takes a special personality with extreme patience to care for them full-time. It just seems to engulf my world and I don't get anything else done. I'm making mistakes at work, can't seem to get caught up with everything at home (or at least keep up), and I am feeling overwhelmed. Waahhhh!
On a positive note, my family is very understanding, and my Dad is very sweet and gentle. He can get testy and sarcastic, but at least he's not abusive.
I wish I could find matches for all the single socks in the laundry room.
...that's the good, the bad and the ugly update
Saturday, August 8, 2009
Back up, Try Again
Well, the assisted living arrangement didn't work out. The building Dad moved into was really nice, as were the people working and living there, but Dad was really lonely. All us kids had thought it would be great because there were lots of activities there and he'd make new friends. We should have looked at the past to predict the future. Dad was never an outgoing, social guy, and he definitely didn't embrace the social activities.
Granted, most were geared toward "women's" types of things....shopping at Wal-Mart, hand-bell choir, swimming aerobics, kitchen band, etc. No self-respecting man would have joined the groups. They did have parties for special days like Memorial Day and the 4th of July, but even when his neighbors encouraged him to go, he declined (sometimes, rather rudely, I admit). He often commented that everyone had white hair (we told him to look in the mirror!) and he was the only one without a walker or a wheelchair. This was true. He did move from his assigned seat in the dining room and sat by himself because he didn't like his table companions. Apparently, "The Captain" (an ex-naval captain) was a bit bossy.
The Driving Issue
So...the obsessive-compulsive that Dad is, he sat in his two-room apartment and went over his checkbook, his 4 rolodex files of cards with names and numbers (I think he had about 7 or 8 for Steve and me) and talked incessantly about needing a car. The paper was delivered to his door daily, and all he looked at was the car ads. Of course, we all had decided it wouldn't be a good idea and tried to steer the conversation away from car talk. Understandably, Dad felt imprisoned and commented that he "didn't know how he got into this position". Sad.
Things got a little hairy when we called one morning and he informed us that he had ordered a car. Alarm bells were blaring! Apparently, he had called a dealership in Orlando and arranged for a car to be delivered. He went to the bank in his building (not a good thing, having a branch of his bank within walking distance) and arranged for a cashier's check to pay for the car. Crazy! Steve, my husband, is really good at talking to people and counseling them, so he went over and they decided to cancel the order. They agreed that it wasn't a good idea for him to drive.
To save room, I'll just list the things that happened related to driving:
- Dad would go down to the parking lot and try all his keys in the cars. The nurse would call me and I'd have to intervene. He couldn't even remember what it looked like.
- He has a valid drivers' license and he'd copy it off and hang it on the wall, and even sent it to me.
- We decided to have him evaluated and have the doctor render an opinion on whether or not he should drive. The psychiatrist was very good at talking with him and said Dad had significant short-term memory loss, but wouldn't say whether or not he should drive. He suggested we take him to the DMV for a driving test, and sent him home with some vitamin stuff. Worthless.
- The DMV wouldn't give him a driving test unless his license was expiring. They suggested we get his primary physician to send a form in to the state saying that he was unfit to drive and needed a test. However, some dementia patients can pass the tests because they don't deal with figuring out where they're going.
Arrrgh! Now it's apparent why there are so many unfit elderly people driving!
We decided to take another approach. We took Dad's car over to his place, got Dad maps, and told him to direct Steve on how to get to the doctor's office (very easy). He turned the wrong way down the hall outside his apartment and couldn't even find his way to the elevator. I guess he'd always just followed me out. It was very sad. He had us driving up and down the same road outside his complex for at least 30 minutes, and got out to ask directions, but then forgot what he was doing before he got to the door of the store. It was apparent that he shouldn't be driving. Physically, he could drive, but he wasn't and isn't capable of figuring out where he's going.
That settled it for a couple of weeks, then the whole issue started again. He stated that a man without a car wouldn't get any respect, and I suppose he's kind of right about that.
Finally, A Change of Location
Eventually, Dad got really lonely and sort of despondent about his living arrangement. We could all sympathize. He's not the type to live on the second floor of a building with no yard or people he wants to talk to. We started looking for a house to rent near Steve and me. We decided on a house that Steve's mom owns that is in a good neighborhood, has a nice back yard and lots of trees, and is roomy enough for 2 unrelated people to live in without getting in each others' way. Carol had talked to a woman at a company that provides caregivers for a really reasonable fee (well, as reasonable as they get). The woman she brought out was perfect...middle-aged, married, a CNA, and very nice. It turned out her relief caregiver was just as great. God took care of us on that one!
It's been 4 days, and things are going well. Dad likes his place and the caregivers. The only problems are that he's trying to get out of the house (especially at night), doesn't sleep, and he wants to get in bed with the caregiver. He had tried "Putting the moves" on several of us (another topic), which was and is very uncomfortable. It's apparently normal for Alzheimer's patients to lose their inhibitions and, for those whom have lost their spouse, to think daughters are the wives. Ick. Carol and I don't like to visit because we're so uncomfortable, so we try to get our husbands to go as shields.
We had keyed deadbolts installed and gave the keys to the caregivers.
The doctor give Dad a prescription for a medication that would help him sleep. Naturally, Dad won't take any of the medicine that other doctors prescribe for him, so we had to get him to promise to take it. The nurse had to crush it up (only 1/2 tablet) and put it in his food. It didn't make a bit of difference. Try cutting the coffee with decaf. Still no change. We'll have to increase the dose. He's so tired, though he says he isn't.
About the bed thing, well....of course they lock their doors, but he doesn't realize it's not appropriate. Dad wants a wife and misses sex and physical touch. I fear that he's thinking I'm mom or a replacement...he's very clingy. Poor guy, he even cried when I went to see him yesterday because he was glad to see me. It's alot of change for him.
I'm not sure what to do about finding him friends or a girlfriend (no wives allowed!). He thought the idea of going to Sunday school was a good idea, so we'll try it.
I'm thinking we'll have to talk to him about the diagnosis of Alzheimers. It's such a depressing, scary word. We have talked to him about having a memory problem, but he dismisses it. He knows, though. I'll have to figure out if and how we should approach it.
Steve and I both are noticing things are getting worse quickly. He didn't really start to wander until he got into this house. He may have at the assisted living, but he was contained and protected. He's like a child.
There's alot more to add, but next time....
Granted, most were geared toward "women's" types of things....shopping at Wal-Mart, hand-bell choir, swimming aerobics, kitchen band, etc. No self-respecting man would have joined the groups. They did have parties for special days like Memorial Day and the 4th of July, but even when his neighbors encouraged him to go, he declined (sometimes, rather rudely, I admit). He often commented that everyone had white hair (we told him to look in the mirror!) and he was the only one without a walker or a wheelchair. This was true. He did move from his assigned seat in the dining room and sat by himself because he didn't like his table companions. Apparently, "The Captain" (an ex-naval captain) was a bit bossy.
The Driving Issue
So...the obsessive-compulsive that Dad is, he sat in his two-room apartment and went over his checkbook, his 4 rolodex files of cards with names and numbers (I think he had about 7 or 8 for Steve and me) and talked incessantly about needing a car. The paper was delivered to his door daily, and all he looked at was the car ads. Of course, we all had decided it wouldn't be a good idea and tried to steer the conversation away from car talk. Understandably, Dad felt imprisoned and commented that he "didn't know how he got into this position". Sad.
Things got a little hairy when we called one morning and he informed us that he had ordered a car. Alarm bells were blaring! Apparently, he had called a dealership in Orlando and arranged for a car to be delivered. He went to the bank in his building (not a good thing, having a branch of his bank within walking distance) and arranged for a cashier's check to pay for the car. Crazy! Steve, my husband, is really good at talking to people and counseling them, so he went over and they decided to cancel the order. They agreed that it wasn't a good idea for him to drive.
To save room, I'll just list the things that happened related to driving:
- Dad would go down to the parking lot and try all his keys in the cars. The nurse would call me and I'd have to intervene. He couldn't even remember what it looked like.
- He has a valid drivers' license and he'd copy it off and hang it on the wall, and even sent it to me.
- We decided to have him evaluated and have the doctor render an opinion on whether or not he should drive. The psychiatrist was very good at talking with him and said Dad had significant short-term memory loss, but wouldn't say whether or not he should drive. He suggested we take him to the DMV for a driving test, and sent him home with some vitamin stuff. Worthless.
- The DMV wouldn't give him a driving test unless his license was expiring. They suggested we get his primary physician to send a form in to the state saying that he was unfit to drive and needed a test. However, some dementia patients can pass the tests because they don't deal with figuring out where they're going.
Arrrgh! Now it's apparent why there are so many unfit elderly people driving!
We decided to take another approach. We took Dad's car over to his place, got Dad maps, and told him to direct Steve on how to get to the doctor's office (very easy). He turned the wrong way down the hall outside his apartment and couldn't even find his way to the elevator. I guess he'd always just followed me out. It was very sad. He had us driving up and down the same road outside his complex for at least 30 minutes, and got out to ask directions, but then forgot what he was doing before he got to the door of the store. It was apparent that he shouldn't be driving. Physically, he could drive, but he wasn't and isn't capable of figuring out where he's going.
That settled it for a couple of weeks, then the whole issue started again. He stated that a man without a car wouldn't get any respect, and I suppose he's kind of right about that.
Finally, A Change of Location
Eventually, Dad got really lonely and sort of despondent about his living arrangement. We could all sympathize. He's not the type to live on the second floor of a building with no yard or people he wants to talk to. We started looking for a house to rent near Steve and me. We decided on a house that Steve's mom owns that is in a good neighborhood, has a nice back yard and lots of trees, and is roomy enough for 2 unrelated people to live in without getting in each others' way. Carol had talked to a woman at a company that provides caregivers for a really reasonable fee (well, as reasonable as they get). The woman she brought out was perfect...middle-aged, married, a CNA, and very nice. It turned out her relief caregiver was just as great. God took care of us on that one!
It's been 4 days, and things are going well. Dad likes his place and the caregivers. The only problems are that he's trying to get out of the house (especially at night), doesn't sleep, and he wants to get in bed with the caregiver. He had tried "Putting the moves" on several of us (another topic), which was and is very uncomfortable. It's apparently normal for Alzheimer's patients to lose their inhibitions and, for those whom have lost their spouse, to think daughters are the wives. Ick. Carol and I don't like to visit because we're so uncomfortable, so we try to get our husbands to go as shields.
We had keyed deadbolts installed and gave the keys to the caregivers.
The doctor give Dad a prescription for a medication that would help him sleep. Naturally, Dad won't take any of the medicine that other doctors prescribe for him, so we had to get him to promise to take it. The nurse had to crush it up (only 1/2 tablet) and put it in his food. It didn't make a bit of difference. Try cutting the coffee with decaf. Still no change. We'll have to increase the dose. He's so tired, though he says he isn't.
About the bed thing, well....of course they lock their doors, but he doesn't realize it's not appropriate. Dad wants a wife and misses sex and physical touch. I fear that he's thinking I'm mom or a replacement...he's very clingy. Poor guy, he even cried when I went to see him yesterday because he was glad to see me. It's alot of change for him.
I'm not sure what to do about finding him friends or a girlfriend (no wives allowed!). He thought the idea of going to Sunday school was a good idea, so we'll try it.
I'm thinking we'll have to talk to him about the diagnosis of Alzheimers. It's such a depressing, scary word. We have talked to him about having a memory problem, but he dismisses it. He knows, though. I'll have to figure out if and how we should approach it.
Steve and I both are noticing things are getting worse quickly. He didn't really start to wander until he got into this house. He may have at the assisted living, but he was contained and protected. He's like a child.
There's alot more to add, but next time....
Saturday, June 27, 2009
Revelation
"Life with Dad" is about revelation.
Alzheimer's, or any type of dementia, is a devastating disease, both for the person having it and those who love or take care of him or her.
Since discovering the condition of Dad, my siblings and I have spoken to so many people, and heard second-hand about so many, that have suffered the effects of Alzheimer's. We have tried to understand the disease and how it progresses. Is what we are experiencing with my father normal? What should we expect to happen next, and into the future? How should we react to things he says or does? How do we help him retain his dignity and some semblence of independence while his ability to function normally slips away? ... So many questions.
I decided to start journaling the things my Dad and our family are going through as a result of his Alzheimer's, partly for others to read, but more to maintain my own sanity. So, here goes....bear with me this first posting, as I have to catch up to the present.
First, a little background. Dad was born in the mid-1920's, and grew up during The Great Depression. The poverty of that era, as well as the fact that he was born and raised in Alabama, had a profound effect on him and who he became. His parents were both educators, and were devoutly Southern Baptists. He was the second oldest of four boys.
During his boyhood, my father witnessed many of his friends and relatives become sick with disease, some of whom died from them. He decided early on that he wanted to be a doctor, a goal he achieved after serving as a pilot in the air force during WWII. He met the love of his life, my mother, during his training while living in the men's dormitory at the college my mother attended. My mom was from Chicago, a very beautiful and educated woman who became an accomplished journalist and college professor while Dad was in medical school. Eventually, they made their way to Central Florida, where I was born and still live.
Dad was a passionate man. Passionate about his family, his profession, and his beliefs. His lifelong hobby was growing and propagating orchids and bromeliads. He loved the outdoors and took great pleasure in watching the birds that came to feed and live by the lake in our back yard. Dad was also very interested in the stock market, and traded actively, especially after retirement. He researched and tracked companies, and had index card boxes full of notes.
Unfortunately, the 1960's took a great toll on my father. He just couldn't handle the "hippie" culture, the anti-war movement and, especially, the Civil Rights efforts that were changing the face of America. At some point, Dad started to drink, and eventually the addiction took over his life and, really, the lives of all of us at home. He finally was able to battle his addiction successfully and has not had a drink (that I know if) in 20 years. On a positive note, many of my parents' best memories and treasured times were after Dad was sober. They were able to travel (my mom's passion) and lived in Alaska several times while Dad worked there taking the place of Doctors whom were on leave. Dad and Mom researched and wrote about our German ancestry, studied German, and visited relatives in that country. I mention Dad's alcoholism not to diminish his integrity, but because many times Alzheimer's can be caused by consuming too much booze.
Dad was, and is, a good man. He always took care of us and provided for us. As I was going through the million pictures that were in the house, so many of them were of the things he did with us. There were pictures of camping, a trip to the West (yes, we drove!), gem mining in North Carolina, a trip the whole family took to Germany, bee-keeping with my younger brother, and many other good memories. Though Dad was a little radical when we were growing up, he mellowed into a sweet, gentle person after all the kids were out of the house (hmmmmm). I would like to remember him the way he was in the years before dementia. His vast knowledge, passions, and interests are still in him somewhere, but the dementia has hidden them deep within.
The reality of Dad's situation hit all of us, especially, during the past year. My parents lived together, by themselves in the home they have owned since 1971. Mom suffered through breast cancer and then a stroke, from which she never fully recovered. She was as sharp as a tack mentally, but often had difficulty walking and was in pain much of the time. Mom pretty much ruled the roost in the later years of their lives. She was very private and stoic (a Lutheran through-and-through), and rarely talked about her troubles. As the child who lived closest to them, I probably saw more than my siblings did, but I was still not as aware of the progression of Dad's dementia as I should have been.
Mom was the "social chairman" as he called her, so whenever we called or had get-togethers, Mom was the one we talked to. Dad was never much of a conversationalist, but his interaction with others , even family members, waned. At some point, Dad stopped working in the yard and lost interest in growing plants. He no longer read books (he was once an avid reader). For years, Dad had kept a book by the sliding glass doors looking out on the lake, and recorded the birds and wildlife he saw. Some time during the past year, he even stopped doing that.
Dad became a sucker for scams. Someone called him and convinced him that he needed a 10-year warranty on his 10-year old car. Mom had to call them back and cancel it. He sent I-don't-know-how-many checks in response to letters that promised him he won millions of dollars, and would get the money if he sent a check. Some of these letters also had small print on the back that "authorized" the scumbags to withdraw money from his bank account or credit card monthly...we're still trying to put a stop to that. We had Dad's mail forwarded to me, and he gets, no exaggeration, at least 10 letters like this a week. It's disgusting how many scams target the elderly.
Dad started forgetting where he was when he was driving. Mom wouldn't let him drive alone...his motor skills were, and are, still excellent, but the memory is gone. Dad started to forget to pay the bills. The power, phone, etc. were turned off, and my mom had to arrange for them to be turned on again. Their insurance was cancelled, then reinstated by my mother. She was having a really hard time. She asked me to help her organize, which I did. I offered to take over their bill-paying, but she declined. It was just too much for her to handle. Naturally, my Dad, ever proud and stubborn, refused to admit there was a problem.
Anyway, we all witnessed Dad's growing forgetfulness, but my parents were unwilling to make changes to help them cope. I kept after my mom and dad to move into a retirement community. Neither of them could take care of the large house and yard, and it would have been much easier on them. They didn't eat well, and were losing weight. Apparently, my mom was all for moving, but couldn't convince my father. I was aware that Dad wasn't doing well, but my siblings and I didn't know how extreme my father's dementia was until our beloved mother passed away three months ago. She suffered a massive stroke in her sleep and died the next day. Dad was, and is, devastated. We all are. It's hard loosing Mom, but just as hard to slowly loose Dad.
During the days immediately following Mom's passing, it was obvious that Dad couldn't live by himself. He was disoriented and couldn't take care of himself. I know some of it was due to the shock of losing his precious wife, but it was clear that Mom had been covering for him. He had lost his inhibitions, and was constantly talking about sex (still does). He had incontinence and wouldn't admit it (still doesn't). We arranged for a 24-hour caregiver to live with him, which worked out beautifully. He was well cared-for and we weren't worried about his safety. However, we soon realized that we might want to make a change because Dad wanted to live closer to one of us, and the caregiver was very expensive. After much looking, we, and he, chose a very nice assisted living facility about 10 minutes from my home.
Alzheimer's, or any type of dementia, is a devastating disease, both for the person having it and those who love or take care of him or her.
Since discovering the condition of Dad, my siblings and I have spoken to so many people, and heard second-hand about so many, that have suffered the effects of Alzheimer's. We have tried to understand the disease and how it progresses. Is what we are experiencing with my father normal? What should we expect to happen next, and into the future? How should we react to things he says or does? How do we help him retain his dignity and some semblence of independence while his ability to function normally slips away? ... So many questions.
I decided to start journaling the things my Dad and our family are going through as a result of his Alzheimer's, partly for others to read, but more to maintain my own sanity. So, here goes....bear with me this first posting, as I have to catch up to the present.
First, a little background. Dad was born in the mid-1920's, and grew up during The Great Depression. The poverty of that era, as well as the fact that he was born and raised in Alabama, had a profound effect on him and who he became. His parents were both educators, and were devoutly Southern Baptists. He was the second oldest of four boys.
During his boyhood, my father witnessed many of his friends and relatives become sick with disease, some of whom died from them. He decided early on that he wanted to be a doctor, a goal he achieved after serving as a pilot in the air force during WWII. He met the love of his life, my mother, during his training while living in the men's dormitory at the college my mother attended. My mom was from Chicago, a very beautiful and educated woman who became an accomplished journalist and college professor while Dad was in medical school. Eventually, they made their way to Central Florida, where I was born and still live.
Dad was a passionate man. Passionate about his family, his profession, and his beliefs. His lifelong hobby was growing and propagating orchids and bromeliads. He loved the outdoors and took great pleasure in watching the birds that came to feed and live by the lake in our back yard. Dad was also very interested in the stock market, and traded actively, especially after retirement. He researched and tracked companies, and had index card boxes full of notes.
Unfortunately, the 1960's took a great toll on my father. He just couldn't handle the "hippie" culture, the anti-war movement and, especially, the Civil Rights efforts that were changing the face of America. At some point, Dad started to drink, and eventually the addiction took over his life and, really, the lives of all of us at home. He finally was able to battle his addiction successfully and has not had a drink (that I know if) in 20 years. On a positive note, many of my parents' best memories and treasured times were after Dad was sober. They were able to travel (my mom's passion) and lived in Alaska several times while Dad worked there taking the place of Doctors whom were on leave. Dad and Mom researched and wrote about our German ancestry, studied German, and visited relatives in that country. I mention Dad's alcoholism not to diminish his integrity, but because many times Alzheimer's can be caused by consuming too much booze.
Dad was, and is, a good man. He always took care of us and provided for us. As I was going through the million pictures that were in the house, so many of them were of the things he did with us. There were pictures of camping, a trip to the West (yes, we drove!), gem mining in North Carolina, a trip the whole family took to Germany, bee-keeping with my younger brother, and many other good memories. Though Dad was a little radical when we were growing up, he mellowed into a sweet, gentle person after all the kids were out of the house (hmmmmm). I would like to remember him the way he was in the years before dementia. His vast knowledge, passions, and interests are still in him somewhere, but the dementia has hidden them deep within.
The reality of Dad's situation hit all of us, especially, during the past year. My parents lived together, by themselves in the home they have owned since 1971. Mom suffered through breast cancer and then a stroke, from which she never fully recovered. She was as sharp as a tack mentally, but often had difficulty walking and was in pain much of the time. Mom pretty much ruled the roost in the later years of their lives. She was very private and stoic (a Lutheran through-and-through), and rarely talked about her troubles. As the child who lived closest to them, I probably saw more than my siblings did, but I was still not as aware of the progression of Dad's dementia as I should have been.
Mom was the "social chairman" as he called her, so whenever we called or had get-togethers, Mom was the one we talked to. Dad was never much of a conversationalist, but his interaction with others , even family members, waned. At some point, Dad stopped working in the yard and lost interest in growing plants. He no longer read books (he was once an avid reader). For years, Dad had kept a book by the sliding glass doors looking out on the lake, and recorded the birds and wildlife he saw. Some time during the past year, he even stopped doing that.
Dad became a sucker for scams. Someone called him and convinced him that he needed a 10-year warranty on his 10-year old car. Mom had to call them back and cancel it. He sent I-don't-know-how-many checks in response to letters that promised him he won millions of dollars, and would get the money if he sent a check. Some of these letters also had small print on the back that "authorized" the scumbags to withdraw money from his bank account or credit card monthly...we're still trying to put a stop to that. We had Dad's mail forwarded to me, and he gets, no exaggeration, at least 10 letters like this a week. It's disgusting how many scams target the elderly.
Dad started forgetting where he was when he was driving. Mom wouldn't let him drive alone...his motor skills were, and are, still excellent, but the memory is gone. Dad started to forget to pay the bills. The power, phone, etc. were turned off, and my mom had to arrange for them to be turned on again. Their insurance was cancelled, then reinstated by my mother. She was having a really hard time. She asked me to help her organize, which I did. I offered to take over their bill-paying, but she declined. It was just too much for her to handle. Naturally, my Dad, ever proud and stubborn, refused to admit there was a problem.
Anyway, we all witnessed Dad's growing forgetfulness, but my parents were unwilling to make changes to help them cope. I kept after my mom and dad to move into a retirement community. Neither of them could take care of the large house and yard, and it would have been much easier on them. They didn't eat well, and were losing weight. Apparently, my mom was all for moving, but couldn't convince my father. I was aware that Dad wasn't doing well, but my siblings and I didn't know how extreme my father's dementia was until our beloved mother passed away three months ago. She suffered a massive stroke in her sleep and died the next day. Dad was, and is, devastated. We all are. It's hard loosing Mom, but just as hard to slowly loose Dad.
During the days immediately following Mom's passing, it was obvious that Dad couldn't live by himself. He was disoriented and couldn't take care of himself. I know some of it was due to the shock of losing his precious wife, but it was clear that Mom had been covering for him. He had lost his inhibitions, and was constantly talking about sex (still does). He had incontinence and wouldn't admit it (still doesn't). We arranged for a 24-hour caregiver to live with him, which worked out beautifully. He was well cared-for and we weren't worried about his safety. However, we soon realized that we might want to make a change because Dad wanted to live closer to one of us, and the caregiver was very expensive. After much looking, we, and he, chose a very nice assisted living facility about 10 minutes from my home.
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