Tough couple of days. Emotions running high. Praying for a weekend of peace...
Dad is so tired. He says he feel "better." But anything he does wears him out. Getting up and eating breakfast wears him out. Getting up and eating dinner wears him out. Taking a shower wears him out. The emotional up and downs with Mom wears him out. He takes a lot of mini naps in his chair and two or three real naps in his bed during the day. He is frustrated that he isn't bouncing back faster.
We've talked that the reality may be that he will take much longer to "bounce back" It may be months- not weeks before he feels able to do some of the things he did before the surgery.
He is worried. Worried that he will die before Mom dies. He asked if I thought it was selfish to want Mom to go first. He doesn't want to think of her in this condition without him. I've probably added to his fear by telling him he has to stick around because I need help with Mom. While I meant that as an encouragement for him to keep on truckin', it was also most likely said in a moment of desperation and Dad picked up on that.
Mom has lashed out at me a couple of times this week in a very hurtful manner. I KNOW it is the Alzheimer's. I KNOW it isn't really "my Mom." But it is so hard to hear those unkind and mean words coming out of my mother's mouth... The blame and accusations. The anger and paranoia and fear. Reasoning goes out the door when Alzheimer's makes it home in your home.
My church secretary and I "compare notes" on my Mom's behavior and that of her young first grade son. Her son has had health problems from birth and many major heart surgeries. He had a couple of slight strokes a year ago after surgery that slightly injured part of the frontal lobe of the brain. Mom's CT scan showed some deterioration in the frontal lobe of the brain as well. We share many of the same frustrations. Some of the same behavioral problems. But his condition is and will continue (we pray) to get better. Mom's won't.
Mom sensed I had withdrawn from her yesterday. I really had to. Thank goodness my daughter came with my grandson and occupied some of Mom's time. But even that became problematic for awhile.
Mom is sorting through pictures, a task I gave her when she was complaining about being bored. Going through pictures with Cheryl and seeing events that took place, she denies she was at the events and believes she wasn't invited. Even a baby shower she gave for my sister-in-law at her home is suspect. She looks at the pictures and is upset that the shower was held in her old home. Even when she is in the pictures- she denies their existence.
She saw things in the pictures she used to own and got upset because she either no longer owns them or gave them away (to me) too soon.
She denies she ever knew I had a home daycare and that she visited frequently and helped take the kids on trips. She denies my daughter was home schooled for a while and she helped. She denies ever seeing my cats. She believes that we kept her away and did not invite her to multiple birthday parties and Christmas events. Even when she is in the pictures.
So my daughter had to end the trip down "memory" lane as it got Mom upset.
Well, time for morning meds and time to see what today will be like...
Friday, September 24, 2010
Saturday, September 18, 2010
Rambling thoughts on Alzheimer's
I’ve had some time to think these past couple of weeks. When someone you love has Alzheimer’s you find out that the disease itself is not what you thought it would be.
It’s not just about forgetfulness. It’s not just about senility, it’s about loss.
At first I thought it was going to be about Mom forgetting to do the laundry. Or putting her keys in the freezer and her ice cream in the oven. I thought it was going to be a very gradual, but reasonable decline. A predictable decline. That once something was forgotten, it would always be forgotten. That once a skill was lost, it wouldn’t even be remembered.
In my mind, she would forget words, then how to do something. I pictured myself as being patient and loving throughout this. I mean, how bad could it be to be with someone who forgets what day it is?
But it isn’t an orderly, gradual decline. And there is NOTHING reasonable about it.
Some call it the “unlearning.” I guess that might be one way to describe it- but that isn’t entirely accurate either, for something known on Monday may not be known on Tuesday or Wednesday, but then be back again on Thursday.
There is no sense to this disease. There is a person you love sitting next to you. They look like your loved one. They sound like your loved one and they may even know some of the things your loved one knows…but they aren’t the same person any more.
And when does this happen? You think back and you see signs that were there- 3, 4, 5, or more years ago. But at the time they seemed insignificant. They were all explained away. And probably still could be except for the total of the changes in the person sitting next to you.
I pictured in my mind my Mom loving me the same way she did when I was a child. But she doesn’t. She still loves me, I know that. But there is no longer any nurturing towards me. Strangers, people she barely knows get that part of her now when it shows up. I’m the bad guy. I’m the person who taught her how to do Sudoku (which she sometimes blames for her memory loss) I’m the one who took her to the doctor, I’m the one who said she needed to move in with us. I’m the one who took over paying her bills. I’m the one who took away the car keys. I’m the one who stops her from self-medicating. I’m the one who told her she can’t give Dad his medication. I’m the one who locked up her medications.
I’m the one who tells her no. “No- You can’t go out and buy new shoes every month. You can’t go out to eat every day. You can’t go to the mall and walk every day. I can’t take you where you want to go when you want to go there.”
I’m the she argues with. I’m the one who feels the brunt of her frustration, her anger, her loss.
Others do to of course-Dad, my daughter, my husband, my son. Depending on the situation, they will feel her anger, they will feel her frustration. She can be downright mean to my daughter- sometimes I think she mixes up my daughter and myself. When the two of us are with my mom, it seems worse. She seems very defensive.
I’ve been accused by my mother’s hairdresser -of all people -of taking away all of the things she enjoys for no reason. According to this woman there is nothing wrong with my mother, she just has a hearing loss. Of course she should know- she sees her all of one hour a week, and most of that time my mother has her hearing aids out. So the one place Mom could go and get emotional support, a friendly familiar face and caring, instead has turned into a place she goes where someone is giving her unrealistic expectations, telling her seditious things in order to make her more upset. Instead of working with us to make Mom’s life easier, she works against us and Mom comes home feeling as if we are the enemy. I’ve hesitated changing hairdressers for her because she likes this woman and it is something familiar. But now it has turned into a battle and I don’t have the time, patience or stomach for it.
Alzheimer’s is not for sissies. It is not what I expected. It is not anything that can be planned for. You can’t protect against it. You can’t pretend it doesn’t exist. You can’t control it. There are moments of light. Moments of remembrance. But it is a terrible, terrible roller coaster ride with no seat belts and no way to get off. It takes prisoner of not just the victim, but the victim’s family and friends.
It is about loss. Every day it is about loss. There is not a day that goes by when you can pretend it isn’t happening. Everything in your life revolves around it. It is about loss, sacrifice and it is about love. Only people with great love in their hearts can deal with this on a daily basis without going insane. Love, support, and friendship are all important.
And for me- if I didn’t have my faith- if I didn’t have that Rock to cling to, those strong arms of others to lift me up- if I didn’t have the Body of Christ behind me, filling in the gaps when I can’t do it all, lifting me up in prayer, reminding me over and over and over again how much God loves us- I would have fallen out of the roller coaster a long time ago.
Rambling thoughts I needed to put on paper…
It’s not just about forgetfulness. It’s not just about senility, it’s about loss.
At first I thought it was going to be about Mom forgetting to do the laundry. Or putting her keys in the freezer and her ice cream in the oven. I thought it was going to be a very gradual, but reasonable decline. A predictable decline. That once something was forgotten, it would always be forgotten. That once a skill was lost, it wouldn’t even be remembered.
In my mind, she would forget words, then how to do something. I pictured myself as being patient and loving throughout this. I mean, how bad could it be to be with someone who forgets what day it is?
But it isn’t an orderly, gradual decline. And there is NOTHING reasonable about it.
Some call it the “unlearning.” I guess that might be one way to describe it- but that isn’t entirely accurate either, for something known on Monday may not be known on Tuesday or Wednesday, but then be back again on Thursday.
There is no sense to this disease. There is a person you love sitting next to you. They look like your loved one. They sound like your loved one and they may even know some of the things your loved one knows…but they aren’t the same person any more.
And when does this happen? You think back and you see signs that were there- 3, 4, 5, or more years ago. But at the time they seemed insignificant. They were all explained away. And probably still could be except for the total of the changes in the person sitting next to you.
I pictured in my mind my Mom loving me the same way she did when I was a child. But she doesn’t. She still loves me, I know that. But there is no longer any nurturing towards me. Strangers, people she barely knows get that part of her now when it shows up. I’m the bad guy. I’m the person who taught her how to do Sudoku (which she sometimes blames for her memory loss) I’m the one who took her to the doctor, I’m the one who said she needed to move in with us. I’m the one who took over paying her bills. I’m the one who took away the car keys. I’m the one who stops her from self-medicating. I’m the one who told her she can’t give Dad his medication. I’m the one who locked up her medications.
I’m the one who tells her no. “No- You can’t go out and buy new shoes every month. You can’t go out to eat every day. You can’t go to the mall and walk every day. I can’t take you where you want to go when you want to go there.”
I’m the she argues with. I’m the one who feels the brunt of her frustration, her anger, her loss.
Others do to of course-Dad, my daughter, my husband, my son. Depending on the situation, they will feel her anger, they will feel her frustration. She can be downright mean to my daughter- sometimes I think she mixes up my daughter and myself. When the two of us are with my mom, it seems worse. She seems very defensive.
I’ve been accused by my mother’s hairdresser -of all people -of taking away all of the things she enjoys for no reason. According to this woman there is nothing wrong with my mother, she just has a hearing loss. Of course she should know- she sees her all of one hour a week, and most of that time my mother has her hearing aids out. So the one place Mom could go and get emotional support, a friendly familiar face and caring, instead has turned into a place she goes where someone is giving her unrealistic expectations, telling her seditious things in order to make her more upset. Instead of working with us to make Mom’s life easier, she works against us and Mom comes home feeling as if we are the enemy. I’ve hesitated changing hairdressers for her because she likes this woman and it is something familiar. But now it has turned into a battle and I don’t have the time, patience or stomach for it.
Alzheimer’s is not for sissies. It is not what I expected. It is not anything that can be planned for. You can’t protect against it. You can’t pretend it doesn’t exist. You can’t control it. There are moments of light. Moments of remembrance. But it is a terrible, terrible roller coaster ride with no seat belts and no way to get off. It takes prisoner of not just the victim, but the victim’s family and friends.
It is about loss. Every day it is about loss. There is not a day that goes by when you can pretend it isn’t happening. Everything in your life revolves around it. It is about loss, sacrifice and it is about love. Only people with great love in their hearts can deal with this on a daily basis without going insane. Love, support, and friendship are all important.
And for me- if I didn’t have my faith- if I didn’t have that Rock to cling to, those strong arms of others to lift me up- if I didn’t have the Body of Christ behind me, filling in the gaps when I can’t do it all, lifting me up in prayer, reminding me over and over and over again how much God loves us- I would have fallen out of the roller coaster a long time ago.
Rambling thoughts I needed to put on paper…
Thursday, September 16, 2010
Back again!
I can't believe it has been this long since I last wrote. One month and one day. A lot can happen in a month.
When I last wrote on Aug 15, Dad was concerned about what would happen with Mom after his surgery- her hair appointments etc. Well, in the very early morning hours of Sunday, September 5th, Dad woke me up-. He had terrible pain in his gut- like someone had kicked him. We called 911 and I road into the ER with him in the ambulance. My DH stayed home to wait for Mom to wake up.
Dad was admitted to the hospital.
To make a long story shorter- Dad's surgery was moved up- although it took a number of days to get that settled. He had surgery on Thursday Sept 9th. The 8th was his 86th birthday and his plans to celebrate birthdays with his great-granddaughter didn't happen.
Dad did well during surgery and things looked good. But being 86 and having had major heart surgery five years ago brought on some minor- albeit annoying and sometimes scary problems.
He came home today from the hospital. I am surprised and pleased. Yesterday- he couldn’t get out of bed or a chair by himself. His nurse over night worked with him over and over and over again until Dad got it. He so desperately wanted to come home and not go to a nursing home. And that sweet, stubborn man made it!
These were rough days for my mom. And for us. Besides the emotional ups and downs and the worry about Dad, things with Mom got worse. She had “stomping feet and yelling” temper tantrums at the hospital. She wanted to touch the machines, she wanted to check his IV’s, she wanted to be his nurse. I ended up calling her doctor and got her some anti-anxiety medicine to take and it did help some.
So much has happened- little things that just seemed to blow up into big issues. Missing money from her purse that was later found in her purse. Being accused of stealing the money and then accused of outing it back.
Finding hidden medicines in places I didn’t think to look, which made me realize I now have to watch her take every pill. I changed her schedule to accommodate mine and still give her the meds at the appropriate times. I try to get ready for bed at 10 pm. So I am giving Mom her nighttime pills- including her “relaxation” pill at 10 PM. She hates it and gives me grief- but it has to be that way.
She fell asleep on night in her chair and I woke her up at 10 PM to give her the meds. She seemed fine and even joked about falling asleep early. I gave her the meds and we both went to bed. The next day, she told my daughter she woke up in her chair and I was forcing pills down her throat and she almost choked to death. Ouch.
And her hair! Oh my goodness! I can’t even describe how many, HOW MANY times I have been asked about her hair appointments. And how many times she has said something to my daughter and my husband! She had a perm scheduled for this Saturday 45 minutes away and I rescheduled it. No way was I going to sit around waiting for that when I have spent so little time at work. My daughter couldn’t take her and knowing there was a possibility that Dad would be coming home- I couldn’t see leaving him alone for at least 3 hours and being that far away from him.
Sooo. Changed the perm to Wednesday the 22nd. My daughter will take her. This has been repeated over and over and over again. I have even sent her an email with the details. It doesn’t matter.
She wanted to go in on Friday for her regular hair appointment and we aren’t going. I set up an appointment locally for tomorrow with someone I know will do a good job- and for less than half the price. Mom is not happy. But that is the way it is.
This hair thing has to change- there are issues with the beautician telling Mom things that aren’t true and feeding Mom’s paranoia. She is rude and inconsiderate when I have tried to talk with her. I’ve let it go, because Mom does enjoy this so much and she has gone there for years. But after the perm, we may have to make other arrangements.
This will be continued later-probably tomorrow- now it is pill time…
When I last wrote on Aug 15, Dad was concerned about what would happen with Mom after his surgery- her hair appointments etc. Well, in the very early morning hours of Sunday, September 5th, Dad woke me up-. He had terrible pain in his gut- like someone had kicked him. We called 911 and I road into the ER with him in the ambulance. My DH stayed home to wait for Mom to wake up.
Dad was admitted to the hospital.
To make a long story shorter- Dad's surgery was moved up- although it took a number of days to get that settled. He had surgery on Thursday Sept 9th. The 8th was his 86th birthday and his plans to celebrate birthdays with his great-granddaughter didn't happen.
Dad did well during surgery and things looked good. But being 86 and having had major heart surgery five years ago brought on some minor- albeit annoying and sometimes scary problems.
He came home today from the hospital. I am surprised and pleased. Yesterday- he couldn’t get out of bed or a chair by himself. His nurse over night worked with him over and over and over again until Dad got it. He so desperately wanted to come home and not go to a nursing home. And that sweet, stubborn man made it!
These were rough days for my mom. And for us. Besides the emotional ups and downs and the worry about Dad, things with Mom got worse. She had “stomping feet and yelling” temper tantrums at the hospital. She wanted to touch the machines, she wanted to check his IV’s, she wanted to be his nurse. I ended up calling her doctor and got her some anti-anxiety medicine to take and it did help some.
So much has happened- little things that just seemed to blow up into big issues. Missing money from her purse that was later found in her purse. Being accused of stealing the money and then accused of outing it back.
Finding hidden medicines in places I didn’t think to look, which made me realize I now have to watch her take every pill. I changed her schedule to accommodate mine and still give her the meds at the appropriate times. I try to get ready for bed at 10 pm. So I am giving Mom her nighttime pills- including her “relaxation” pill at 10 PM. She hates it and gives me grief- but it has to be that way.
She fell asleep on night in her chair and I woke her up at 10 PM to give her the meds. She seemed fine and even joked about falling asleep early. I gave her the meds and we both went to bed. The next day, she told my daughter she woke up in her chair and I was forcing pills down her throat and she almost choked to death. Ouch.
And her hair! Oh my goodness! I can’t even describe how many, HOW MANY times I have been asked about her hair appointments. And how many times she has said something to my daughter and my husband! She had a perm scheduled for this Saturday 45 minutes away and I rescheduled it. No way was I going to sit around waiting for that when I have spent so little time at work. My daughter couldn’t take her and knowing there was a possibility that Dad would be coming home- I couldn’t see leaving him alone for at least 3 hours and being that far away from him.
Sooo. Changed the perm to Wednesday the 22nd. My daughter will take her. This has been repeated over and over and over again. I have even sent her an email with the details. It doesn’t matter.
She wanted to go in on Friday for her regular hair appointment and we aren’t going. I set up an appointment locally for tomorrow with someone I know will do a good job- and for less than half the price. Mom is not happy. But that is the way it is.
This hair thing has to change- there are issues with the beautician telling Mom things that aren’t true and feeding Mom’s paranoia. She is rude and inconsiderate when I have tried to talk with her. I’ve let it go, because Mom does enjoy this so much and she has gone there for years. But after the perm, we may have to make other arrangements.
This will be continued later-probably tomorrow- now it is pill time…
Sunday, August 15, 2010
Sunday Evening thoughts
I haven't spent much time with Mom this week. I mean- we all live together, but I haven't had time to sit and visit much. Sermons, hospital visits, funeral preparations have all been in the forefront. Spent a little time with her when the kids were here. It was good to sit and talk with my mom and my daughter. My daughter did most of the talking and I could breathe and not be the bad guy for awhile.
Tomorrow after I preside over the funeral (for a woman who died on her 55th wedding anniversary), Dad has a cardiologist appointment. I don't think we'll get much information, but I hope we will find out the results of the stress test. Dad joked that waiting for the test was a part of the stress test itself. I believe the wait after is...
My brother is going to get here on Wednesday evening. I hope this is good timing so he and Dad can spend some time together. My bro may not be here for the surgery itself, but at least he will get to see Dad before hand.
Dad is worried what we will do after he has his surgery, because he won't be able to drive Mom to get her hair done each Friday for a few weeks. My first reaction wasn't very kind so I kept that to myself. Instead, I told him we would do what we can. My mother's obsession with getting her hair done bothers me- always has. This is nothing new. Dad put off going to the ER once because Mom would miss her hair appointment! Ain't going to happen again!
Okay. Time for bed and up early to go over funeral meditation. Prayers coveted for tomorrow. For the family in mourning and for my mom and dad.
Tomorrow after I preside over the funeral (for a woman who died on her 55th wedding anniversary), Dad has a cardiologist appointment. I don't think we'll get much information, but I hope we will find out the results of the stress test. Dad joked that waiting for the test was a part of the stress test itself. I believe the wait after is...
My brother is going to get here on Wednesday evening. I hope this is good timing so he and Dad can spend some time together. My bro may not be here for the surgery itself, but at least he will get to see Dad before hand.
Dad is worried what we will do after he has his surgery, because he won't be able to drive Mom to get her hair done each Friday for a few weeks. My first reaction wasn't very kind so I kept that to myself. Instead, I told him we would do what we can. My mother's obsession with getting her hair done bothers me- always has. This is nothing new. Dad put off going to the ER once because Mom would miss her hair appointment! Ain't going to happen again!
Okay. Time for bed and up early to go over funeral meditation. Prayers coveted for tomorrow. For the family in mourning and for my mom and dad.
Wednesday, August 11, 2010
Another Short Conversation...
Dad had his Stress Test today. We don't know the results. But in the car on the way home, Dad said the cardiologist that was in the room reading the test said she thought she saw a problem with the Mitral Valve. This is a valve he had repaired 5 1/2 years ago after his heart attack.
Dad: The cardiologist thought she saw a problem with the Mitral Valve.
Me: Is that the one you had replaced or repaired?
Dad: Repaired.
Mom: What are you talking about?
Dad: The Mitral Valve in my heart may have a problem.
Mom: I don't think I've ever heard of a Mitral valve in the heart...
Silence.
Me: What kind of pizza do you want Mom?
Mom has been a RN for almost 60 years. I'm just sad.
Dad: The cardiologist thought she saw a problem with the Mitral Valve.
Me: Is that the one you had replaced or repaired?
Dad: Repaired.
Mom: What are you talking about?
Dad: The Mitral Valve in my heart may have a problem.
Mom: I don't think I've ever heard of a Mitral valve in the heart...
Silence.
Me: What kind of pizza do you want Mom?
Mom has been a RN for almost 60 years. I'm just sad.
Last Night- Something New
Dad came into my office last night and said "Something new. I told your mother I was going to go and take my evening pills."
Conversation:
Dad: I'm going to go take my evening pills."
Mom: Pills? What pills?
Dad: My evening pills. Medicine.
Mom: You take pills?
Dad: Yes, I have for years.
Mom: Oh. Okay. I guess I forgot.
Conversation:
Dad: I'm going to go take my evening pills."
Mom: Pills? What pills?
Dad: My evening pills. Medicine.
Mom: You take pills?
Dad: Yes, I have for years.
Mom: Oh. Okay. I guess I forgot.
Tuesday, August 10, 2010
Tomorrow
Tomorrow my Dad has a stress test scheduled. He has to have this done prior to surgery.
He is going to have to have surgery for his "Triple A"- Abdominal Aortic Aneurysm. We don't know when yet- but it should be soon.
We are waiting to see if the manufacturer of the stent they would use thinks it will work in Dad's situation. There is information about this surgery at The Mayo Clinic Website.
In Dad's case I guess the artery right below the aneurysm is bent and there is concern by the doctor whether or not this will work.
Dad had major heart surgery 5 years ago. Quadruple by-pass, valve replacement and a valve repair. There was some kidney damage at the time and was on dialysis for a short time. He has also had a stroke about 10 or 11 years ago and had surgery on his carotid artery in his neck. Dad is 85 years old- almost 86, his birthday is in September.
I have so many concerns about this. Obvious ones. The life and death ones. Concerns for him and for my mom. The "what ifs"...
So today is a normal day as we wait for tomorrow. Tomorrow will likely be a normal day as well- medical tests are nothing new in this household.
It's the wait- the waiting to find out when and how that is hard.
He is going to have to have surgery for his "Triple A"- Abdominal Aortic Aneurysm. We don't know when yet- but it should be soon.
We are waiting to see if the manufacturer of the stent they would use thinks it will work in Dad's situation. There is information about this surgery at The Mayo Clinic Website.
In Dad's case I guess the artery right below the aneurysm is bent and there is concern by the doctor whether or not this will work.
Dad had major heart surgery 5 years ago. Quadruple by-pass, valve replacement and a valve repair. There was some kidney damage at the time and was on dialysis for a short time. He has also had a stroke about 10 or 11 years ago and had surgery on his carotid artery in his neck. Dad is 85 years old- almost 86, his birthday is in September.
I have so many concerns about this. Obvious ones. The life and death ones. Concerns for him and for my mom. The "what ifs"...
So today is a normal day as we wait for tomorrow. Tomorrow will likely be a normal day as well- medical tests are nothing new in this household.
It's the wait- the waiting to find out when and how that is hard.
Sunday, August 8, 2010
Sunday Morning Musings
A quick post while I drink my second cup of coffee for the morning and get ready for church...
There's a new show coming out on Showtime called "The Big C." It's a comedy about cancer.
Yeah, I know. A comedy... About cancer... What's funny about cancer?
Well, what's funny about Alzheimer's? Nothing- except- there are moments of laughter, there are moments of comedy, there are moments of pure funny.
Life is that way. All life results in death. Some of the ways we go through life, some of the things we do and say to get to that end are funny.
We say on the Alzheimer's Caregivers Forum that if "we don't laugh, we cry."
While most of us agree on the forum we wouldn't want to have anyone make fun of someone with AD, we have to admit we do find humor in it. There is a place and a time for both crying and laughing.
Me- I'm going to watch "The Big C" and see how they handle it. I suspect I'll cry some. And I pray I laugh too. Life's too short. We have to live, laugh, love, hope, and pray while we can.
The Trailer for The Big C
There's a new show coming out on Showtime called "The Big C." It's a comedy about cancer.
Yeah, I know. A comedy... About cancer... What's funny about cancer?
Well, what's funny about Alzheimer's? Nothing- except- there are moments of laughter, there are moments of comedy, there are moments of pure funny.
Life is that way. All life results in death. Some of the ways we go through life, some of the things we do and say to get to that end are funny.
We say on the Alzheimer's Caregivers Forum that if "we don't laugh, we cry."
While most of us agree on the forum we wouldn't want to have anyone make fun of someone with AD, we have to admit we do find humor in it. There is a place and a time for both crying and laughing.
Me- I'm going to watch "The Big C" and see how they handle it. I suspect I'll cry some. And I pray I laugh too. Life's too short. We have to live, laugh, love, hope, and pray while we can.
The Trailer for The Big C
Friday, August 6, 2010
Alzheimer's from a 19 year old's perspective...
Okay- I should be going to bed. I'm tired and haven't been sleeping well. But I need to write some things down before I forget them.
I shared the following on the alz.org website.
Alzheimer's from the perspective of a 19 year old boy: (DS means "dear son")
DS is playing Guitar Hero in the family room. Mom walks in and sees DS with his fake guitar. "When did you learn to play guitar- no one told me!" DS: "It's a game Gma- this guitar is a controller to a game." Mom:"Oh okay."
Couple of days later DS is again playing Guitar Hero. Mom walks in and watches. Sees DS "playing the guitar" and notices the TV is on. (the game is shown on the screen) Looks at my son in amazement and says:"You are so talented! You can play the guitar and watch TV at the same time. I wish my dad was still alive to see this. You must have gotten his musical talent." DS (couldn't bring himself to tell her it was a game) Thanks Gma.
*********
Scene set up- DS playing an Xbox game while sitting on the couch in the family room. He has headphones on and is playing a combat game with friends who are in other cities. He plays this game a lot.
Mom wanders in stops and watches for awhile. Walks away- shaking her head. Comes back 5-10 minutes later. Watches awhile. leaves. Comes back. Taps DS on shoulder. "There sure doesn't seem to be much plot to this movie." DS: "Its a game GMA- we're having a battle." Mom: "Oh- OK."
The next day- Mom walks in as DS is playing the game again. Taps him on the shoulder- "Do you watch the same movie everyday?" DS-"Its a game GMA. Not a movie." Gma wanders off muttering-"Still doesn't have much plot."
**********
DS playing the same game at a later time. He has his headphones on and is talking to his friends via the headphones as he plays. Mom hears him talking and comes up behind him and taps him on the shoulder. "Who are you talking to?" DS: "Some friends I'm playing a game with."
Mom: "How can you play a game, watch a movie and talk to people on the phone at the same time?" DS: Starts to explain to her that the movie is a game, and he's wearing headphones that he can use to talk to his friends. Decides against it and say: "I'm talented Gma- you said so yourself." Mom pats him on the shoulder and says "yes you are. yes you are."
(In the back ground my father can be heard yelling "its a game! Its just a game! Leave the boy alone!")
**********
6 AM one morning as DS gets ready for work- making his lunch for the day. Mom wanders into the kitchen. She doesn't have her hearing aids in yet, so she can't really hear a thing.
Mom: Hi, I don't have my ears in yet. (Big smile)
Mom: What are you doing?
DS: Making my lunch.
Mom: What??
DS: Making my lunch.
Mom: When did you eat breakfast??
DS: I'm packing a lunch to take to work.
Mom: What? You work today? Do you work today?
DS: Yes Gma.
Mom: Do you work outside?
DS: Yes, Gma. I work for a company that creates hybrid corn. I work cross pollinating the corn. Sometimes I work in the lab.
Mom: Your work is bad? I'm sorry.
Later that afternoon when he comes home from work- sweaty, sunburned and smelly...
Mom: Were you out fishing today?
DS: No Gma I was at work.
Mom: Do you work outside?
DS: Yes Gma- I work outside. I'm going to go take a shower.
Mom: You could hug your Gma.
DS: You don't want to hug me right now Gma- I stink!
I shared the following on the alz.org website.
Alzheimer's from the perspective of a 19 year old boy: (DS means "dear son")
DS is playing Guitar Hero in the family room. Mom walks in and sees DS with his fake guitar. "When did you learn to play guitar- no one told me!" DS: "It's a game Gma- this guitar is a controller to a game." Mom:"Oh okay."
Couple of days later DS is again playing Guitar Hero. Mom walks in and watches. Sees DS "playing the guitar" and notices the TV is on. (the game is shown on the screen) Looks at my son in amazement and says:"You are so talented! You can play the guitar and watch TV at the same time. I wish my dad was still alive to see this. You must have gotten his musical talent." DS (couldn't bring himself to tell her it was a game) Thanks Gma.
*********
Scene set up- DS playing an Xbox game while sitting on the couch in the family room. He has headphones on and is playing a combat game with friends who are in other cities. He plays this game a lot.
Mom wanders in stops and watches for awhile. Walks away- shaking her head. Comes back 5-10 minutes later. Watches awhile. leaves. Comes back. Taps DS on shoulder. "There sure doesn't seem to be much plot to this movie." DS: "Its a game GMA- we're having a battle." Mom: "Oh- OK."
The next day- Mom walks in as DS is playing the game again. Taps him on the shoulder- "Do you watch the same movie everyday?" DS-"Its a game GMA. Not a movie." Gma wanders off muttering-"Still doesn't have much plot."
**********
DS playing the same game at a later time. He has his headphones on and is talking to his friends via the headphones as he plays. Mom hears him talking and comes up behind him and taps him on the shoulder. "Who are you talking to?" DS: "Some friends I'm playing a game with."
Mom: "How can you play a game, watch a movie and talk to people on the phone at the same time?" DS: Starts to explain to her that the movie is a game, and he's wearing headphones that he can use to talk to his friends. Decides against it and say: "I'm talented Gma- you said so yourself." Mom pats him on the shoulder and says "yes you are. yes you are."
(In the back ground my father can be heard yelling "its a game! Its just a game! Leave the boy alone!")
**********
6 AM one morning as DS gets ready for work- making his lunch for the day. Mom wanders into the kitchen. She doesn't have her hearing aids in yet, so she can't really hear a thing.
Mom: Hi, I don't have my ears in yet. (Big smile)
Mom: What are you doing?
DS: Making my lunch.
Mom: What??
DS: Making my lunch.
Mom: When did you eat breakfast??
DS: I'm packing a lunch to take to work.
Mom: What? You work today? Do you work today?
DS: Yes Gma.
Mom: Do you work outside?
DS: Yes, Gma. I work for a company that creates hybrid corn. I work cross pollinating the corn. Sometimes I work in the lab.
Mom: Your work is bad? I'm sorry.
Later that afternoon when he comes home from work- sweaty, sunburned and smelly...
Mom: Were you out fishing today?
DS: No Gma I was at work.
Mom: Do you work outside?
DS: Yes Gma- I work outside. I'm going to go take a shower.
Mom: You could hug your Gma.
DS: You don't want to hug me right now Gma- I stink!
Thursday, August 5, 2010
Updates!
I can't believe its been over a month since I last wrote on this blog. So many things have occurred, there is no way I can remember or update everything... but here is what I can tell you:
I was away from home at school for 10 days. It was a great break for me, but a difficult time for my husband and father.
Coming home was a shock- my system wasn't prepared for reality. I was short tempered for a couple of days as I tried to get back into the swing of things. Mom was confused and irritated that I had been gone. To top that off, there were doctor's appointments and off course trying to get back in the swing of things at work too.
Mom's doctor's appointment went okay- she tried to persuade her primary care doctor (Dr. P) that Dr. A's diagnosis was wrong. Dr. P added Namenda twice a day to the Aricept and also added Zoloft for depression. I'm happy to say I think one or both are helping. There isn't as much negative talk and negative, nasty behavior. She seems calmer and doesn't upset as easily.
Dad has a CT scan on his Abdominal Aortic Aneurysm. We got the results yesterday and it isn't good. He will need surgery soon. They would like to use a stent, but have to contact the company that makes the stents to see if it will work with his condition. I suspect his surgery will occur before the end of the month.
There are a lot of unknowns with this. What do I do with Mom while Dad is in the hospital? How much help will he need when he gets home and how much will he be restricted? What does that mean for Mom's care?
??
I was away from home at school for 10 days. It was a great break for me, but a difficult time for my husband and father.
Coming home was a shock- my system wasn't prepared for reality. I was short tempered for a couple of days as I tried to get back into the swing of things. Mom was confused and irritated that I had been gone. To top that off, there were doctor's appointments and off course trying to get back in the swing of things at work too.
Mom's doctor's appointment went okay- she tried to persuade her primary care doctor (Dr. P) that Dr. A's diagnosis was wrong. Dr. P added Namenda twice a day to the Aricept and also added Zoloft for depression. I'm happy to say I think one or both are helping. There isn't as much negative talk and negative, nasty behavior. She seems calmer and doesn't upset as easily.
Dad has a CT scan on his Abdominal Aortic Aneurysm. We got the results yesterday and it isn't good. He will need surgery soon. They would like to use a stent, but have to contact the company that makes the stents to see if it will work with his condition. I suspect his surgery will occur before the end of the month.
There are a lot of unknowns with this. What do I do with Mom while Dad is in the hospital? How much help will he need when he gets home and how much will he be restricted? What does that mean for Mom's care?
??
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