This was started in February. And I will be updating it soon. Didn't want to delete it...
Pat broke her hip a couple weeks ago, 2 1/2 to be exact. She was sent to a bigger hospital for surgery and within 12 hours of us "checking in" to one hospital, she was coming out of recovery with a new hip, at the other hospital. By the morning she already had stood up, although we didn't see it, we felt that was amazing.
The next day, the same thing, but nothing else. In a normal situation, without Alzheimer's involved, she would have been walking the next day! They had planned to release her in 2 days.
Ssaturday was rough
Sunday brought
Monday - doing good but eyes are still shut.
Tuesday - we couldn't make it cause of the roads being closed
Wednesday - she was supposed to be released, but when we got there we thought, no way! Sure enough the doctor said they were keeping her. She had pneumonia...
I never updated this until now. I just haven't had the time or composure, I guess, for lack of a better word.
Friday, June 10, 2011
Tuesday, December 28, 2010
Update on Pat's Condition
It's been so long since I wrote. I've been busier than the average person with Pat's condition quickly declining and my Dad still not up to par. I should have made time to write here.... because it is important to share this with other people going through the same thing. Knowledge is the KEY to surviving Alzheimer's.
Pat was getting so bad, her anxiety growing in to something unbearable for both Mark and I. The doctor had prescribed Ativan for this but we held off... at first. But it got so bad for her to go anywhere that we had to try something. We started giving them to her once in a while, just to calm her.
Before too long she started to be anxious all day long. Asking over and over to go somewhere and not making any sense. We thought it was the progression of the disease. So we called the doctor and he told us to double up on her anxiety so then we were giving her 6 pills a day. This made her act drunk though, slurring her words and having a hard time to walk. It scared us to see her decline so fast.
Talking to a friend one day, she asked what Pat was taking for her anxiety. Thank you God for this conversation! She told me that this drug can really mess you up. It goes in quick and leaves quick which puts a person on a roller coaster effect.
After speaking with Mark, and him recalling a friend that had taken too much of this same medicine and had the same result, I called the doctor. We changed the medicine to something more mild.
That same day, she improved. She was aware, able to feed herself, knew all her kids names, knew her name. She could walk, go to the bathroom on her own.
Now it is like 6 months ago. She is doing so good
We are in the process of getting a referral to a Geriatric Doctor, someone who specializes in the elderly, in hopes of regulating her medicine and improving her quality of life.
This experience has made us realize that she is in the right place. Because we know who she is and how she is, we were able to detect a problem. Someone who doesn't know her, might not realize it.
This has been the best Christmas ever! While I know it will continue to get worse, for now, it is wonderful to have Pat back with us, in the land of the living!
Pat was getting so bad, her anxiety growing in to something unbearable for both Mark and I. The doctor had prescribed Ativan for this but we held off... at first. But it got so bad for her to go anywhere that we had to try something. We started giving them to her once in a while, just to calm her.
Before too long she started to be anxious all day long. Asking over and over to go somewhere and not making any sense. We thought it was the progression of the disease. So we called the doctor and he told us to double up on her anxiety so then we were giving her 6 pills a day. This made her act drunk though, slurring her words and having a hard time to walk. It scared us to see her decline so fast.
Talking to a friend one day, she asked what Pat was taking for her anxiety. Thank you God for this conversation! She told me that this drug can really mess you up. It goes in quick and leaves quick which puts a person on a roller coaster effect.
After speaking with Mark, and him recalling a friend that had taken too much of this same medicine and had the same result, I called the doctor. We changed the medicine to something more mild.
That same day, she improved. She was aware, able to feed herself, knew all her kids names, knew her name. She could walk, go to the bathroom on her own.
Now it is like 6 months ago. She is doing so good
We are in the process of getting a referral to a Geriatric Doctor, someone who specializes in the elderly, in hopes of regulating her medicine and improving her quality of life.
This experience has made us realize that she is in the right place. Because we know who she is and how she is, we were able to detect a problem. Someone who doesn't know her, might not realize it.
This has been the best Christmas ever! While I know it will continue to get worse, for now, it is wonderful to have Pat back with us, in the land of the living!
Saturday, March 20, 2010
We All Want to Feel Beautiful - even a 78 year old with Alzheimer's
This week has been a little tough because Pat is fighting off a cold she got from her daughter's last weekend. It's made it tough on all of us because she is worse than a little kid at times. She has just felt icky and tired.
I gave her her bath this morning, 3 days later than normal, because I know she hasn't felt up to it. Or maybe because I know how much harder it will be for me with her feeling this way. Either way, we prolonged it.
After her bath, I picked her hair for her. This is something I have started doing lately because she only pretends to lift her hair. If I don't do it, her hair is matted and she looks pathetic, for lack of a better word.
Anyway, today I picked out her hair and she pointed out that when she smiles the side of her face is all wrinkly. It occurred to me, in that instant, that just because you get older or have Alzheimer's, you don't stop caring about your appearance. You still want to look the best you can.
Starting today, I am going to take more time on lifting her hair, helping her with jewelry and clothese selections. It's not just about making sure she is cared for... provided for.
It's about holding on to her dignity.
I gave her her bath this morning, 3 days later than normal, because I know she hasn't felt up to it. Or maybe because I know how much harder it will be for me with her feeling this way. Either way, we prolonged it.
After her bath, I picked her hair for her. This is something I have started doing lately because she only pretends to lift her hair. If I don't do it, her hair is matted and she looks pathetic, for lack of a better word.
Anyway, today I picked out her hair and she pointed out that when she smiles the side of her face is all wrinkly. It occurred to me, in that instant, that just because you get older or have Alzheimer's, you don't stop caring about your appearance. You still want to look the best you can.
Starting today, I am going to take more time on lifting her hair, helping her with jewelry and clothese selections. It's not just about making sure she is cared for... provided for.
It's about holding on to her dignity.
Monday, March 15, 2010
Pat had a Birthday
Pat turned 78 a couple weeks ago and we had a great time! We had 2 of her friends, her son, my mother, and Mark, Summer, and I. We ate at her favorite restaraunt and sang happy birthday to her. I was emotional, as I watched her. It was just so good to see her happy and interacting instead of just existing.
We came home, let her eat more sweets (what everyone bought for her), set up her new puzzle, and continued to make the day hers. I bought a birthday card that said on the front, "You rock girl!" and she laughed about it everytime she looked at it. And at one point even said, "That's great Chris". Her tone reminded me of the old Pat, the good time loving Pat, not the worried all the time Pat.
The whole day was special for her. And by morning it was like it never happened. In fact, the whole day was spent reminding her where the cards came from. Eventually we just let the memories fade away. They were good while they lasted and reminding her only upsets her. She is upset that she forgets such big pieces of her life now.
But I think she still, for now, knows we love her very much.
We came home, let her eat more sweets (what everyone bought for her), set up her new puzzle, and continued to make the day hers. I bought a birthday card that said on the front, "You rock girl!" and she laughed about it everytime she looked at it. And at one point even said, "That's great Chris". Her tone reminded me of the old Pat, the good time loving Pat, not the worried all the time Pat.
The whole day was special for her. And by morning it was like it never happened. In fact, the whole day was spent reminding her where the cards came from. Eventually we just let the memories fade away. They were good while they lasted and reminding her only upsets her. She is upset that she forgets such big pieces of her life now.
But I think she still, for now, knows we love her very much.
Friday, February 19, 2010
Simple Things Aren't Always So Simple
Mark's daughter was with for half of her school vacation this week. To Mark and I, it is ordinary. To Pat, it changes her whole world.
When Summer first gets to our house after school, Mark and I usually go somewhere alone for an hour or so. She's almost 16 and all Pat really needs is a companion. Plus, we NEED a break and Summer gets that. The whole time we are gone she questions Summer about where we are and why did we take her car without asking her. I told Summer, from now on, she needs to set up a puzzle for Pat to help distract her.
Her being here sends Pat in to another world. She starts her questions about where she lives and why can't she drive, and on and on. She adjusts quickly to Summer being with us though, and is back to her self by breakfast the next morning.
And then when Summer leaves, it creates confusion for her. I knew it would be worse this time because we had her longer. The night she left, Pat kept telling me something wasn't right. I just isn't right. She felt fine she said, but something was different. It must have been the lack of Summer, her teenage stuff scattered on the floor, and her bubbly personality that Pat missed. We did too!
To us, change in our lives is minor and we handle the simples things easily. For someone with Alzheimer's, sometimes even simple things aren't always so simple.
When Summer first gets to our house after school, Mark and I usually go somewhere alone for an hour or so. She's almost 16 and all Pat really needs is a companion. Plus, we NEED a break and Summer gets that. The whole time we are gone she questions Summer about where we are and why did we take her car without asking her. I told Summer, from now on, she needs to set up a puzzle for Pat to help distract her.
Her being here sends Pat in to another world. She starts her questions about where she lives and why can't she drive, and on and on. She adjusts quickly to Summer being with us though, and is back to her self by breakfast the next morning.
And then when Summer leaves, it creates confusion for her. I knew it would be worse this time because we had her longer. The night she left, Pat kept telling me something wasn't right. I just isn't right. She felt fine she said, but something was different. It must have been the lack of Summer, her teenage stuff scattered on the floor, and her bubbly personality that Pat missed. We did too!
To us, change in our lives is minor and we handle the simples things easily. For someone with Alzheimer's, sometimes even simple things aren't always so simple.
Saturday, February 6, 2010
Recharging this Superbowl weekend with a Break from Alzheimer's
I just returned from a walk in the woods with Mark. It was chilly but the sun was gorgeous as we SLOWLY wandered along, not a care in the world. No need to hurry back to check on Pat... through the window to see if she's remained building her puzzle or gotten up for any reason. No having to come right inside when we got back.
Pat is at her daughter's house for the weekend and we are enjoying our time without responsibility. Dinner and up late last night. It's weird with no noise control, no schedule to keep, no meds to remember, no one to assist or answer. It seems weird to me anyway. My subconcience still has thought of her a dozen times only to realize she isn't with us. I feel like her mother.
The past month has been rough, yet still the same. She hasn't gotten much worse but the constant inconsistency of Alzheimer's is maddening. She likes corn, then she doesn't. She doesn't want anything to drinkwhen it's water because she doesn't want to go the bathroom but when I replace it with Crystal Light she drinks it right down. I tell her, "Time to take a bath".... She replies, "I don't feel good." How cold she must think I am when I authoritatively tell her she has to. She doesn't realize she says this every time I ask her to do something she doesn't like.
I cross the line with her all the time. Tell her lies, trick her and play games on a daily basis. And I feel bad for doing it, but that is the name of the game when caring for someone with Alzheimer's. Their rationality is gone and you need to keep them safe... so you learn to think for both of you and convince them to do what they need to do.
I respect Pat. I've known her for almost 10 years and have seen her go through some tough stages in her life. We have become pretty close to one another being together all the time. I can read what she is thinking/obsessing about just by her body language. And I can see how lost she is. Alzheimer's just stinks.
It requires so much energy to care for someone with Alzheimer's. It's emotional, physical and mental. We are happy to have the chance to power back up this weekend!
Pat is at her daughter's house for the weekend and we are enjoying our time without responsibility. Dinner and up late last night. It's weird with no noise control, no schedule to keep, no meds to remember, no one to assist or answer. It seems weird to me anyway. My subconcience still has thought of her a dozen times only to realize she isn't with us. I feel like her mother.
The past month has been rough, yet still the same. She hasn't gotten much worse but the constant inconsistency of Alzheimer's is maddening. She likes corn, then she doesn't. She doesn't want anything to drinkwhen it's water because she doesn't want to go the bathroom but when I replace it with Crystal Light she drinks it right down. I tell her, "Time to take a bath".... She replies, "I don't feel good." How cold she must think I am when I authoritatively tell her she has to. She doesn't realize she says this every time I ask her to do something she doesn't like.
I cross the line with her all the time. Tell her lies, trick her and play games on a daily basis. And I feel bad for doing it, but that is the name of the game when caring for someone with Alzheimer's. Their rationality is gone and you need to keep them safe... so you learn to think for both of you and convince them to do what they need to do.
I respect Pat. I've known her for almost 10 years and have seen her go through some tough stages in her life. We have become pretty close to one another being together all the time. I can read what she is thinking/obsessing about just by her body language. And I can see how lost she is. Alzheimer's just stinks.
It requires so much energy to care for someone with Alzheimer's. It's emotional, physical and mental. We are happy to have the chance to power back up this weekend!
Monday, January 18, 2010
Alzheimer's Overload
My plan had been to write in this blog a few times a week, every week. I felt I could offer a lot of helpful insight to others dealing with Alzheimer's because of what I have gone through and continue to go through. But then I realized that I couldn't do it as much as I had hoped. I can not drown myself in Alzheimer's.
I live Alzheimer's every second of every day. The breaks I get are few and far between. I live for the hour a week Pat goes to the hairdresser. And when Mark's daughter is home with us, it feels nice to take a walk outside and not have to rush back to check on Pat. But still, those breaks are so few that I never really feel revived. So, as a result, I have slowed down with my posts on this blog. I hope to pick back up again, but for now, this is all I can do.
So, for those of you that look for my posts, I apologize for their scarcit of late. I've just needed a little break and will be back again soon with fresh material, inspiration, stories, frustrations, research, and general information.
I live Alzheimer's every second of every day. The breaks I get are few and far between. I live for the hour a week Pat goes to the hairdresser. And when Mark's daughter is home with us, it feels nice to take a walk outside and not have to rush back to check on Pat. But still, those breaks are so few that I never really feel revived. So, as a result, I have slowed down with my posts on this blog. I hope to pick back up again, but for now, this is all I can do.
So, for those of you that look for my posts, I apologize for their scarcit of late. I've just needed a little break and will be back again soon with fresh material, inspiration, stories, frustrations, research, and general information.
Wednesday, January 13, 2010
Schedule for Alzheimer's a Challenge
The one struggle we always have with Pat is her sleeping pattern. She tries to go to bed so early and I know part of that is our fault. Things have been stressful, the questions constant and grating on our hearts, and when she wants to go to bed at 7:30, we let her start getting ready. EVERYTHING is a concern lately. Normally I can remove whatever is making her uneasy, but not lately.
Anyway, she goes to bed by 8:30 and then is up at 6:30. I have caught her the past two mornings and sent her back to bed. Her reasoning is more impaired in the wee morning hours and to convince her that I am headed back to bed too is tough. Yesterday I sware the second I shut the door, she sprung from bed and got dressed. Today she stayed in bed for another hour at least.
So, do I continue to make her go back to bed? Or do we all just adjust our schedules? While she doesn't try to leave, cook, or do anything really, I still don't trust her to be up alone. Luckily, Mark is an insomniac so he hears her when she wakes most times.
I guess for now, we will try to keep her more active. Tonight I will try to get her to build a puzzle after supper or to color. And hopefully, tomorrow, she will sleep. You can tell she needs a schedule but when she wakes, she thinks she is supposed to be up... and once that squeaky wheel inside her brain starts turning, you can forget about her sleeping.
Anyway, she goes to bed by 8:30 and then is up at 6:30. I have caught her the past two mornings and sent her back to bed. Her reasoning is more impaired in the wee morning hours and to convince her that I am headed back to bed too is tough. Yesterday I sware the second I shut the door, she sprung from bed and got dressed. Today she stayed in bed for another hour at least.
So, do I continue to make her go back to bed? Or do we all just adjust our schedules? While she doesn't try to leave, cook, or do anything really, I still don't trust her to be up alone. Luckily, Mark is an insomniac so he hears her when she wakes most times.
I guess for now, we will try to keep her more active. Tonight I will try to get her to build a puzzle after supper or to color. And hopefully, tomorrow, she will sleep. You can tell she needs a schedule but when she wakes, she thinks she is supposed to be up... and once that squeaky wheel inside her brain starts turning, you can forget about her sleeping.
Tuesday, January 12, 2010
Lotsa Helping Hands Calendar Service
I just stumbled across this scheduling calendar specifically tailored to the caregiver! It is designed so that friends and other caregivers can sign up for different tasks like making meals, appointments, companionship. The best part about it is the service reminds those that sign up when they have scheduled to do something so you don't need to worry about it.
Here is the link to it! http://www.lotsahelpinghands.com/ I hope it helps. We all need a break and this tool can certainly help! Let me know your thoughts on the service once you try it out.
Here is the link to it! http://www.lotsahelpinghands.com/ I hope it helps. We all need a break and this tool can certainly help! Let me know your thoughts on the service once you try it out.
Thursday, January 7, 2010
Favorite Game to Play with Pat and No, It's Not on the Wii!
I love playing Yahtzee
with Pat. I can usually handle one and a half games before my good nature starts to fade... and no, it's not because she is winning. It's tough to repeat yourself (Have I said that before? I'm sure you will see me repeat myself a lot.). Every time I remind her to roll and what to play. It sort of reminds me of when I was a child and couldn't get others to play with me. I would play games against myself. But I didn't need to remind myself to go, roll, write...
I always have to coax her into playing. I know she is afraid she won't know what to do so I tell her, "Oh, come on Pat, I'll help you." And I'm glad she will do it because it helps pass the time. I don't really see her get excited about it, but she uses her mind keeping score and rolling the dice.
She's pretty good at recognizing Full House, Large Straight, Small Straight and of course YAHTZEE! When her granddaughter is home for the weekend, this is a game we can all play together and it includes Pat in it. Inclusion matters so much.
If you don't have your own copy of Yahtzee, you can get it anywhere. I looked it up at Amazon.com (affiliate link) and right now they have it for as low as $6.48! It's important to keep motivated and playing games is almost a neccessity.
with Pat. I can usually handle one and a half games before my good nature starts to fade... and no, it's not because she is winning. It's tough to repeat yourself (Have I said that before? I'm sure you will see me repeat myself a lot.). Every time I remind her to roll and what to play. It sort of reminds me of when I was a child and couldn't get others to play with me. I would play games against myself. But I didn't need to remind myself to go, roll, write...I always have to coax her into playing. I know she is afraid she won't know what to do so I tell her, "Oh, come on Pat, I'll help you." And I'm glad she will do it because it helps pass the time. I don't really see her get excited about it, but she uses her mind keeping score and rolling the dice.
She's pretty good at recognizing Full House, Large Straight, Small Straight and of course YAHTZEE! When her granddaughter is home for the weekend, this is a game we can all play together and it includes Pat in it. Inclusion matters so much.
If you don't have your own copy of Yahtzee
, you can get it anywhere. I looked it up at Amazon.com (affiliate link) and right now they have it for as low as $6.48! It's important to keep motivated and playing games is almost a neccessity.
Monday, January 4, 2010
Activity for Alzheimer's Patients
I have discovered one of the best pasttimes for Pat! It helps stimulate her mind while giving me something to do that is different and entertaining on these wintery days when we are stuck inside. Puzzle Challenge: Crosswords & More!
I know that I have mentioned this in a previous post, but it is so great, I have to talk about again.
Unfortunately for some people, you may not have the Nintendo Wii. I strongly recommend getting one if you have an Alzheimer's victim in your life. There are a lot of games you can play on it to benefit the patient as well as the caregiver and people of all ages are using it to stay fit mentally and physically.
Pat has used the Wii Fit Plus
game with me. She will get on the balance board, have her weight measured and do the 3 balance tests that measure your Wii Fit Age. It's good to get her up and involved and I think in time, I could get her to try one of the games, but haven't found a physical game yet that she could do because of her back.
Puzzle Challenge: Crosswords & More is a lot of fun for the whole family. Pat, her granddaughter, and I have tried the crossword puzzles and especially liked that they have different levels of difficulty. Pat is a pro at crossword puzzles and her face lit up when we played. We also tried the Word Search puzzle and Pat found 2 of the words before we did. It held her interest the whole time we played!
To get your copy of the games or the Nintendo Wii, I recommend Amazon(affiliate link).
If you know someone living with Alzheimer's, please share this blog with them and help spread the word. Thank you!
I know that I have mentioned this in a previous post, but it is so great, I have to talk about again.Unfortunately for some people, you may not have the Nintendo Wii
. I strongly recommend getting one if you have an Alzheimer's victim in your life. There are a lot of games you can play on it to benefit the patient as well as the caregiver and people of all ages are using it to stay fit mentally and physically.Pat has used the Wii Fit Plus
game with me. She will get on the balance board, have her weight measured and do the 3 balance tests that measure your Wii Fit Age. It's good to get her up and involved and I think in time, I could get her to try one of the games, but haven't found a physical game yet that she could do because of her back.Puzzle Challenge: Crosswords & More is a lot of fun for the whole family. Pat, her granddaughter, and I have tried the crossword puzzles and especially liked that they have different levels of difficulty. Pat is a pro at crossword puzzles and her face lit up when we played. We also tried the Word Search puzzle and Pat found 2 of the words before we did. It held her interest the whole time we played!
To get your copy of the games or the Nintendo Wii, I recommend Amazon(affiliate link).
If you know someone living with Alzheimer's, please share this blog with them and help spread the word. Thank you!
Sunday, January 3, 2010
Alzheimer's Patient Activity: What Matters Most
New Years came and went... and Pat sat in her chair, watching us, staring in to space... and I feel bad for her. I feel bad that she is forgotten by society. So many people say they will call, stop by, take her to lunch, etc, but then we never hear from them. And I wonder why?
Why do people act as though she hasdied? Like she no longer exists? Mark and I both think people avoid her because they don't know what to do around her. What do they talk about? What will she do? Will she freak out? Will she remember who they are? I'm not sure what goes through people's minds. I understand their discomfort. Before Pat, I was the same way.
Now that I take care of Pat, though, I've changed the way I look at life. I don't think so much about what I am getting out of my relationship with her. More about what she gets out of it. Does it really matter if you are uncomfortable... even irritated for an hour or two? Just look at what good it can do for that person. It brightens the day for someone who has NOTHING to look forward to.
I guess that's why I take care of Pat. I know the difference it makes in her life. I know sometimes, it is a difference between life and death... and sometimes much more. There are bigger things than life and death that none of us would care to witness. I shutter to think about someone else taking care of her. I know the things she does even with two people living with her, loving her and watching her. How is someone with no emotional ties going to be when no one is watching them?
I know some incredible nurses and aides, but I also know some not so good ones. Who is to say which of the two would be her caregiver? She is safe with us, no question... no gamble. And it's fine the way it is. we just wish she had more interaction.
Interaction for Pat is important and it's hard for us to do it every day. Every day. All day. And it's not that she is tough to be around. It's that I have never spent 24 hours a day, 7 days a week in the same house with anyone ever. Even Mark and I spend less time together than we do with her so it would be nice to have visitors. I understand how akward it is though and that all her friends are as old as her or older.
Perhaps it is time to get some relief help from time to time.
Why do people act as though she hasdied? Like she no longer exists? Mark and I both think people avoid her because they don't know what to do around her. What do they talk about? What will she do? Will she freak out? Will she remember who they are? I'm not sure what goes through people's minds. I understand their discomfort. Before Pat, I was the same way.
Now that I take care of Pat, though, I've changed the way I look at life. I don't think so much about what I am getting out of my relationship with her. More about what she gets out of it. Does it really matter if you are uncomfortable... even irritated for an hour or two? Just look at what good it can do for that person. It brightens the day for someone who has NOTHING to look forward to.
I guess that's why I take care of Pat. I know the difference it makes in her life. I know sometimes, it is a difference between life and death... and sometimes much more. There are bigger things than life and death that none of us would care to witness. I shutter to think about someone else taking care of her. I know the things she does even with two people living with her, loving her and watching her. How is someone with no emotional ties going to be when no one is watching them?
I know some incredible nurses and aides, but I also know some not so good ones. Who is to say which of the two would be her caregiver? She is safe with us, no question... no gamble. And it's fine the way it is. we just wish she had more interaction.
Interaction for Pat is important and it's hard for us to do it every day. Every day. All day. And it's not that she is tough to be around. It's that I have never spent 24 hours a day, 7 days a week in the same house with anyone ever. Even Mark and I spend less time together than we do with her so it would be nice to have visitors. I understand how akward it is though and that all her friends are as old as her or older.
Perhaps it is time to get some relief help from time to time.
Monday, December 28, 2009
Alzheimer's Christmas Gift Idea a Success for Stimulating Activity
We are so happy about our choice in Christmas gifts this year for Pat. We purchased the Wii Puzzle Challenge game for our Nintendo Wii and it's perfect for her!
Pat likes that it shows up so big on the television screen. When we played, she guessed a couple of the answers on the normal crossword puzzles. She was also able to find a couple of the words on one of the word search puzzles the game has.
We love that you can select various degrees of difficulty for each type of puzzle. We need to operate the controllers for Pat but it is a great way to stimulate an Alzheimer's patients mind while passing the time. And it is a great way to interact.
game for our Nintendo Wii and it's perfect for her!Pat likes that it shows up so big on the television screen. When we played, she guessed a couple of the answers on the normal crossword puzzles. She was also able to find a couple of the words on one of the word search puzzles the game has.
We love that you can select various degrees of difficulty for each type of puzzle. We need to operate the controllers for Pat but it is a great way to stimulate an Alzheimer's patients mind while passing the time. And it is a great way to interact.
Sunday, December 27, 2009
The Weekend Without Alzheimer's
Well, it's Sunday and we have been without Pat since Thursday evening. At first, we weren't sure what to do with ourselves. You get used to ALWAYS worrying about that person. "Shhh, be quiet you'll wake her... did you brush your teeth, put your boots on... yes we're going somewhere... put your boots on... of course you are going with us... put your boots on... of course you have your pocketbook." You get the idea and it never ends. If you aren't thinking of answers to her questions, you are thinking of ways to avoid those questions. And in all the silent times you are thinking about how crappy this disease is, how it used to be, what coud be, and what ultimately will be. So when we are away from her it takes time to adjust.
So, being Christmas, we were more emotional than normal. Visiting with a friend, a few drinks, and the atmosphere of the Christmas tree lights, burning candle, and quiet music playing had our guard down when our friend started talking to us about Pat and told us no one would blame us if we couldn't continue to care for her. We talked a lot that night about her, sharing funny stories about our current situation. We laughed so hard that it turned to tears for me.
Oh, this disease stinks. And we can't walk away. As we told stories about her, you could hear the endearment in our voices. We love her. And just because she can be annoying, frustrating, and difficult beyond what any of us could imagine someone to be, we love her.
We have enjoyed the rest for our minds, voices, and patience this weekend. Our weekend away from Pat has given us the break we needed. Having an extra day away made the difference and we actually got beyond the "wind down stage." Tomorrow morning we'll be ready to jump into caregiving again, no matter what we find.
So, being Christmas, we were more emotional than normal. Visiting with a friend, a few drinks, and the atmosphere of the Christmas tree lights, burning candle, and quiet music playing had our guard down when our friend started talking to us about Pat and told us no one would blame us if we couldn't continue to care for her. We talked a lot that night about her, sharing funny stories about our current situation. We laughed so hard that it turned to tears for me.
Oh, this disease stinks. And we can't walk away. As we told stories about her, you could hear the endearment in our voices. We love her. And just because she can be annoying, frustrating, and difficult beyond what any of us could imagine someone to be, we love her.
We have enjoyed the rest for our minds, voices, and patience this weekend. Our weekend away from Pat has given us the break we needed. Having an extra day away made the difference and we actually got beyond the "wind down stage." Tomorrow morning we'll be ready to jump into caregiving again, no matter what we find.
Monday, December 21, 2009
Alzheimer's & The Christmas Holiday
Christmas time can be confusing and exhausting for an Alzheimer's patient. It can also be a positive experience.
Like most things, I can't tell how Pat will react. At least, not until I see her facial expression change, her hands start to shake, and the confusion fully planted behind her eyes, and by then it is too late. I'm sure this is the case for most caregivers.
There is no blueprint for Alzheimer's patients. While there are similiarities, it is not cut and dry. I thought I would point that out before discussing how our Christmas preparations with Pat are going.
This weekend was the launch of our "Christmas season". We began with decorating the tree and sugar cookie making. Pat did okay with both. Last year she could care less about the tree but this year she hung a few different ornaments without direction or hesitation. The sugar cookies were a hit for her too. It took us a while to get her out to the table. Once I realized it was because she thought we wanted her to cook the cookies, I was able to coax her out. She thoroughly enjoyed our mistakes and various candies that didn't fit the color scheme.
Sunday was the party with her family. That morning she signed her cards without much confusion and we were done within 20 minutes! I had expected it to go a lot slower for her, but I think having something to focus her mind on, grounded her. Plus, we left around noon and had the party earlier than normal so she would be at her best point during the day.
Getting out the door was a little stressful. The normal worries about hat, boots, the newest confusion about my coat being hers, and we were off. The ride up was quiet. I tried to keep her focused on where we were going by talking about seeing the kids and grandchildren, but she couldn't retain it.
Once we got there, out of the car with the normal sneakers in the plastic bag, gloves put back on, getting her legs under her, shuffle to the steps, in the door, okay- go all the way through... ahhhh, we had a great time!
It was so nice to see her laughing... and living. Her whole family was there and my heart welled with happiness for her. It is so hard to get everyone together and I know it is what she needs. She needs more than Mark and I, especially during the holidays. She needs those warm hugs from those she loves the most. When I see her hug others, I feel she is trying to hang on with each one.
This morning she remembered yesterdays party still. She slept past 7:30 until 10:30! We started to worry because she NEVER sleeps in. She seems to be happier today. By tonight she may not remember any of it but she had it for a while.
So far Christmas has been fun for her and us. It is going to seem so strange without her here on Christmas morning because she is such a big part of the family. Still, it will be nice to wake up Christmas morning and not have to tell her that it is indeed Christmas day over and over and over again. Pat will be with other family this year for Christmas and I think that's great! They can give her the Christmas cheer and extra love she needs this year.
Like most things, I can't tell how Pat will react. At least, not until I see her facial expression change, her hands start to shake, and the confusion fully planted behind her eyes, and by then it is too late. I'm sure this is the case for most caregivers.
There is no blueprint for Alzheimer's patients. While there are similiarities, it is not cut and dry. I thought I would point that out before discussing how our Christmas preparations with Pat are going.
This weekend was the launch of our "Christmas season". We began with decorating the tree and sugar cookie making. Pat did okay with both. Last year she could care less about the tree but this year she hung a few different ornaments without direction or hesitation. The sugar cookies were a hit for her too. It took us a while to get her out to the table. Once I realized it was because she thought we wanted her to cook the cookies, I was able to coax her out. She thoroughly enjoyed our mistakes and various candies that didn't fit the color scheme.Sunday was the party with her family. That morning she signed her cards without much confusion and we were done within 20 minutes! I had expected it to go a lot slower for her, but I think having something to focus her mind on, grounded her. Plus, we left around noon and had the party earlier than normal so she would be at her best point during the day.
Getting out the door was a little stressful. The normal worries about hat, boots, the newest confusion about my coat being hers, and we were off. The ride up was quiet. I tried to keep her focused on where we were going by talking about seeing the kids and grandchildren, but she couldn't retain it.
Once we got there, out of the car with the normal sneakers in the plastic bag, gloves put back on, getting her legs under her, shuffle to the steps, in the door, okay- go all the way through... ahhhh, we had a great time!
It was so nice to see her laughing... and living. Her whole family was there and my heart welled with happiness for her. It is so hard to get everyone together and I know it is what she needs. She needs more than Mark and I, especially during the holidays. She needs those warm hugs from those she loves the most. When I see her hug others, I feel she is trying to hang on with each one.
This morning she remembered yesterdays party still. She slept past 7:30 until 10:30! We started to worry because she NEVER sleeps in. She seems to be happier today. By tonight she may not remember any of it but she had it for a while.
So far Christmas has been fun for her and us. It is going to seem so strange without her here on Christmas morning because she is such a big part of the family. Still, it will be nice to wake up Christmas morning and not have to tell her that it is indeed Christmas day over and over and over again. Pat will be with other family this year for Christmas and I think that's great! They can give her the Christmas cheer and extra love she needs this year.
Tuesday, December 15, 2009
Coming Home Isn't Always Sweet
We picked Pat up yesterday morning from her daughter's. It went okay. She was still sleeping and I had to wake her up and that is out of the norm. She was confused when her daughter came in but her daughter just acted like it was normal for her to go to work, kissed her mom goodbye, and breezed out. It works so much better than trying to "make it okay" because we will NEVER be able to make it okay for Pat. I quickly got her dressed, ready, and out the door before she had time to panic. Breakfast was fine, coming home was fine, and I took care of her clothes before she had time to notice them so that went well.
Then we went to my Dad's and she was very confused. She was upset that Mark didn't know where she was and how would she get home and where were her house keys, and on and on. I was able to reason with her that she lives with me, but I realized for the first time, this could be a problem eventually. We know a lot could get worse quick.
Even today, she is more confused. She has asked about her daughter coming here, even though she isn't. She remembers, somewhere in the clouds, something about her daughter, but doesn't remember the entire weekend. I feel bad for Pat to lose so much time. We all talk about how we need more time. Maybe we should feel lucky for all the things that make us busy. She has nothing but time on her hands and each step fades in to nothing behind her, like she was never there.
As the days go by, Pat declines, but only a little here and a little there. I hate this disease. It's impossible to gauge, study, and ainticipate what will happen. At times, we can figure what is triggering a certain reaction, but most of the time we can't so frustration sets in for us... and her.
We get frustrated and have to walk away... but we always want to come back. We know there will be a time, but right now, this is where she needs to be. Maybe just as much for our piece of mind as for hers. We missed Pat while she was gone. Don't get me wrong, we enjoyed our carefree, much needed weekend, but there was a spot where she was supposed to be. And we both felt it.
So I guess when I think about it, it was sweet for her to come home. Yes she was confused and a lot more edgy than most days, but this is where she belongs. This is her home where she has her bedroom, her routine, and her caregivers. And I think deep down she must know that.
Then we went to my Dad's and she was very confused. She was upset that Mark didn't know where she was and how would she get home and where were her house keys, and on and on. I was able to reason with her that she lives with me, but I realized for the first time, this could be a problem eventually. We know a lot could get worse quick.
Even today, she is more confused. She has asked about her daughter coming here, even though she isn't. She remembers, somewhere in the clouds, something about her daughter, but doesn't remember the entire weekend. I feel bad for Pat to lose so much time. We all talk about how we need more time. Maybe we should feel lucky for all the things that make us busy. She has nothing but time on her hands and each step fades in to nothing behind her, like she was never there.
As the days go by, Pat declines, but only a little here and a little there. I hate this disease. It's impossible to gauge, study, and ainticipate what will happen. At times, we can figure what is triggering a certain reaction, but most of the time we can't so frustration sets in for us... and her.
We get frustrated and have to walk away... but we always want to come back. We know there will be a time, but right now, this is where she needs to be. Maybe just as much for our piece of mind as for hers. We missed Pat while she was gone. Don't get me wrong, we enjoyed our carefree, much needed weekend, but there was a spot where she was supposed to be. And we both felt it.
So I guess when I think about it, it was sweet for her to come home. Yes she was confused and a lot more edgy than most days, but this is where she belongs. This is her home where she has her bedroom, her routine, and her caregivers. And I think deep down she must know that.
Friday, December 11, 2009
Long Needed Break from Alzheimer's Patient
Pat is going to her daughters this weekend and I am giddy! It has taken me a while to feel that way. I used to feel like I was weak and ditching my responsiblities everytime I left her. Now, I know I need a break. As the disease worsens and the woman I know disappears, common courtesies go out the window. And it wears a person down. It's hard to keep your calm with a child that never lets up.
I need to remind myself this break is not a typical break from Pat. We get a one hour break per week from Pat. And in that hour we run around like mad people doing all of our errands. Yes, we can take her with us, but sometimes we just don't have the time... or patience, to shuffle through the store, saying hello to people we don't know. Mark and I make our small hour break about her so what kind of break is that really? We are still thinking about her. "What medicines need to be picked up, groceries - make sure we have the Little Debbies, okay let's split up at this store because we only have 20 minutes left, and okay lets go pick her up..." I am usually exhausted after that hour break.
This weekend I am not doing anything for Pat except a little Christmas shopping. I don't need to straighten her room or throw out her "collected treasures" that she has picked up and stored away. This weekend it is all about what I need. Without that selfish focus, I won't have the strength, patience, love and faith it takes to provide the love Pat needs. We all need a little me time.
I need to remind myself this break is not a typical break from Pat. We get a one hour break per week from Pat. And in that hour we run around like mad people doing all of our errands. Yes, we can take her with us, but sometimes we just don't have the time... or patience, to shuffle through the store, saying hello to people we don't know. Mark and I make our small hour break about her so what kind of break is that really? We are still thinking about her. "What medicines need to be picked up, groceries - make sure we have the Little Debbies, okay let's split up at this store because we only have 20 minutes left, and okay lets go pick her up..." I am usually exhausted after that hour break.
This weekend I am not doing anything for Pat except a little Christmas shopping. I don't need to straighten her room or throw out her "collected treasures" that she has picked up and stored away. This weekend it is all about what I need. Without that selfish focus, I won't have the strength, patience, love and faith it takes to provide the love Pat needs. We all need a little me time.
Wednesday, December 9, 2009
Why Do Alzheimer's Patients Lash Out at Family?
One of the hardest things for families, from what I have heard, is how the Alzheimer's person treats their closest relatives. I don't know how many times I have heard a story about hateful a parent is to their child or spouse. Remember that. I have heard that story SO MANY TIMES. It isn't because it is you. It's how the disease works. It's just another reason I think Alzheimer's is the worst disease out there.
I see Mark's frustration with his mom's anger. And I think he's shocked by it when it happens and a little hurt, especially because my interactions are completely opposite. Pat thanks me, loves me, and trusts me. On occassion, she will get upset with me but it's out of frustration more than anything else.
I don't have the answers to why Alzheimer's patients sometimes act worse around family members than caregivers. But I do have my opinions about it.
I think with Mark a lot of times he forgets that she is sick. He insists on correcting her, reminding her, and teaching her. I just play along with her. Sometimes I correct her but if she starts to get irritated, I just say, "oh, okay Pat." A lot of times what she says doesn't make much sense and I just get tired of repeating myself. I don't think keeping her oriented is as important as keeping her happy.
I don't believe he corrects her so much because he is being mean. He corrects her because it is a natural reaction to correct someone who is doing something wrong or has forgotten something. And he may do it because, well, it's his mom. And he knows what a smart person she has always been. Maybe deep down correcting her is a try at "fixing" her disease.
I think it is easier for an outsider to care for someone with Alzheimer's because they have no expectations. I met Pat in the very early stages of Alzheimer's, before anyone knew she had it. I had nothing to compare her behavior to. I have always known her as a frightened, worried woman and I have always reached out to her in a caregiver sort of role. I can't imagine what it is like to watch a strong woman like Pat slip away. It would be hard not to react.
Her reactions to Mark are compiled with stress, confusion, frustration, and a feeling of loss. She is his mom and now he is telling her what to do. That's hard to take when the roles reverse. She doesn't know she is driving us crazy with repetition, worry, and deceitful behavior. And while she remembers sometimes that she lives with us, I'm sure she isn't thinking it is so we can keep an eye on her. She looks at us like we are stealing her independence. 77 years old and everybody is telling her what to do. You would lash out too.
As I said before, these are my opinions and not medically explored. I live this situation every day.
I see Mark's frustration with his mom's anger. And I think he's shocked by it when it happens and a little hurt, especially because my interactions are completely opposite. Pat thanks me, loves me, and trusts me. On occassion, she will get upset with me but it's out of frustration more than anything else.
I don't have the answers to why Alzheimer's patients sometimes act worse around family members than caregivers. But I do have my opinions about it.
I think with Mark a lot of times he forgets that she is sick. He insists on correcting her, reminding her, and teaching her. I just play along with her. Sometimes I correct her but if she starts to get irritated, I just say, "oh, okay Pat." A lot of times what she says doesn't make much sense and I just get tired of repeating myself. I don't think keeping her oriented is as important as keeping her happy.
I don't believe he corrects her so much because he is being mean. He corrects her because it is a natural reaction to correct someone who is doing something wrong or has forgotten something. And he may do it because, well, it's his mom. And he knows what a smart person she has always been. Maybe deep down correcting her is a try at "fixing" her disease.
I think it is easier for an outsider to care for someone with Alzheimer's because they have no expectations. I met Pat in the very early stages of Alzheimer's, before anyone knew she had it. I had nothing to compare her behavior to. I have always known her as a frightened, worried woman and I have always reached out to her in a caregiver sort of role. I can't imagine what it is like to watch a strong woman like Pat slip away. It would be hard not to react.
Her reactions to Mark are compiled with stress, confusion, frustration, and a feeling of loss. She is his mom and now he is telling her what to do. That's hard to take when the roles reverse. She doesn't know she is driving us crazy with repetition, worry, and deceitful behavior. And while she remembers sometimes that she lives with us, I'm sure she isn't thinking it is so we can keep an eye on her. She looks at us like we are stealing her independence. 77 years old and everybody is telling her what to do. You would lash out too.
As I said before, these are my opinions and not medically explored. I live this situation every day.
Thursday, December 3, 2009
No Rhyme or Reason with Alzheimer's
There is no "figuring out" Alzheimer's. Once you think you have, things change.
Our water comes from a well so we need to watch the amount of water we use. Plus, as a concern for our planet, we try to conserve water.
Sometimes Pat forgets she went to the bathroom so she will go in 5 or 6 times before bed. We have told her a hundred times not to flush when she just goes pee, but she always does. It's not her fault that she doesn't remember. To help her, Mark made a sign that read: Don't flush when you pee.
As harmless as this sign was, it created a world of problems. She got incredibly confused, and everytime she went in to the bathroom, she would come back out and ask what she was supposed to do. Finally I removed the sign.
I thought removing the sign would make things go back to normal, but she rememberd that sign! This morning she was very upset because she thought we were against her and didn't want her to go to the bathroom. We expected her to just forget about the sign, like she does with everything else, but she didn't. There is just no rhyme or reason with Alzheimer's!
Our water comes from a well so we need to watch the amount of water we use. Plus, as a concern for our planet, we try to conserve water.
Sometimes Pat forgets she went to the bathroom so she will go in 5 or 6 times before bed. We have told her a hundred times not to flush when she just goes pee, but she always does. It's not her fault that she doesn't remember. To help her, Mark made a sign that read: Don't flush when you pee.
As harmless as this sign was, it created a world of problems. She got incredibly confused, and everytime she went in to the bathroom, she would come back out and ask what she was supposed to do. Finally I removed the sign.
I thought removing the sign would make things go back to normal, but she rememberd that sign! This morning she was very upset because she thought we were against her and didn't want her to go to the bathroom. We expected her to just forget about the sign, like she does with everything else, but she didn't. There is just no rhyme or reason with Alzheimer's!
Wednesday, December 2, 2009
Dealing with Alzheimer's Stress Levels
It's no surprise that popular Alzheimer's websites like http://www.alz.org/ offer free stress checks for Alzheimer's caregivers. It's the most stressful thing I've ever done. And it's emotionally draining. Don't get me wrong, I want to be here. I made that choice and will take care of Pat for as long as I am able, but it's still stressful at times.
Life is full of stressors without Alzheimer's in the mix and bottom line, Alzheimer's doesn't stop for colds, headaches, bedtime or other stressors. It knows no boundaries.
Something that my mother has told me a thousand times comes to mind right now: You can only control yourself and your reactions. And that is so true. I may be able to curb Pat's reactions but not all the time. It needs to start with me. The calmer I am with Pat, the easier she calms down or accepts what I have told her as truth.
Sometimes my calming voice doesn't reach her, but still if I control my demeanor around her, it helps me too. I used to be a telemarketer and the biggest technique taught to us was the most basic, smile before you call. If you just take the time to smile instead of react, it relieves the tension and opens the door for a positive attitude.
So remember, when it gets tough, smile. Fake it at first if you have to. Remind yourself, you can only control your actions. And you are only responsible for your actions. Do your best and leave the rest!
Life is full of stressors without Alzheimer's in the mix and bottom line, Alzheimer's doesn't stop for colds, headaches, bedtime or other stressors. It knows no boundaries.
Something that my mother has told me a thousand times comes to mind right now: You can only control yourself and your reactions. And that is so true. I may be able to curb Pat's reactions but not all the time. It needs to start with me. The calmer I am with Pat, the easier she calms down or accepts what I have told her as truth.
Sometimes my calming voice doesn't reach her, but still if I control my demeanor around her, it helps me too. I used to be a telemarketer and the biggest technique taught to us was the most basic, smile before you call. If you just take the time to smile instead of react, it relieves the tension and opens the door for a positive attitude.
So remember, when it gets tough, smile. Fake it at first if you have to. Remind yourself, you can only control your actions. And you are only responsible for your actions. Do your best and leave the rest!
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