I know I haven't been blogging much lately...I have been busy living my life rather than blogging about it I guess :)...and happy about it!
Today was Christmas - at least as I write this, at 11:58 p.m. at the moment. And although I had no gifts to open, it was one of the best Christmases I can remember! My husband and I had bought a new TV as our Christmas gift to each other, we've had it for a couple of months, and are enjoying it a lot. My daughter and grandson are out of town, visiting relatives on her dad's side of the family - that has been the only damper on my day, but even so I have been blessed with joy!
Starting the day with church is always great, I wish I could start EVERY day with church! The song leader, Mary, and I sang a duet. It is the first time I have sung in church although I play the keyboard for every service, and I got off to a bit of a rough start vocally...but then was ok after that. Mary, of course, did a great job from start to finish, she's a real pro up there :). The message was excellent as it always is.
Afterward we picked my mom up from the nursing home. She is in a big of a cognitive slump today (Lewy Body Dementia involves lots of cognitive peaks and valleys - "fluctuating cognition" they call it.), but I was excited for her to open her Christmas gift from my sister and I and our husbands - a digital photo frame. I had loaded it with lots of family pictures from past and present, and she watched it for a couple of hours, really was thrilled with it!
I made our traditional Christmas dinner of homemade tomato soup (lots of ricotta and cream!) and very rich cheese sandwiches on English muffin bread with 5 kinds of cheeses, spread with real butter and fried on the skillet until crispy. This has been our Christmas dinner ever since my mom requested it when she was in the early stages of the disease. And I believe it always will be our Christmas dinner, even when...well, after...
My mom stayed and visited for about 3 hours total. As her disease progresses she wants to spend less and less time away from her nursing home - it is small, family-like, everybody knows everybody, she thrives on her friendships and the routine there. She likes it here at my home also, loves playing with my dogs especially, but starts getting anxious after a while...lately it's been about an hour, maybe 90 minutes, before she wants to go back. So today was wonderful, having her here for 3 hours!
After we took my mom back, I had a rare Christmas treat: a nap with my husband! Usually our sleeping schedules are so different, and many Sundays my 31MO grandson is here, so a Sunday afternoon nap isn't possible, but today it was just us, and I slept like a rock for 2 hours, at the same time as hubby! That was a real Christmas gift right there!
After I got up, as he continued to sleep, I took care of my birds and made his lunch and had a couple of hours to myself which is always nice.
This year I have had great peace and joy about Christmas that I haven't experienced in a long time. Part of it are the blessings I receive from twitter, believe it or not - so many lovely Christians, it is like a worship celebration whenever I log on! Part of it is that Jesus has been drawing me so much closer this year, and His Word has been really in my heart. He's been giving me a thirst for it, and even though I don't remember what I've read afterward, the feeling is there, and I know that it is in my heart - the Holy Spirit will be - has been, and is! - able to bring it to my mind as needed, even if my mind doesn't recall it all the time. And the Word has been working in my heart, which sets my mind on things above rather than loving the world...how uplifting is that!
So this year I have had joy and peace in spite of circumstances, my eyes on Jesus and my heart centered on His Word and His promises. What a perfect day!
Showing posts with label LBD. Show all posts
Showing posts with label LBD. Show all posts
Sunday, December 25, 2011
Saturday, August 13, 2011
My Funny Mom #lewybody
I took my mom to the beauty shop to get her hair done today. We've been going there for several years, and whenever we walk in the door all of the beauticians look up from what they're doing and say "Hello Renee!" and she just loves going there. She was much more delusional and confused than usual today but at least in a good frame of mind.
They had a new gal there, Theresa. And she did my mom's hair. (We keep a photo of my mom with her hair done the way she likes it in the drawer at this little 4-booth salon, because she's no longer able to articulate her preferences.) Beautiful Theresa had dark hair with a wide streak of blue running through it - very cute on her. She had my mom's photo but had a question about it, and asked my mom to clarify something. My mother couldn't answer, so she just said, "Do whatever you want, use your imagination, I'm sure it will be fine!" Theresa said, "You don't know that, Renee, you could walk out of here with blue hair!" and without missing a beat my mom said, "Is that what happened to you?"
Everybody - including my mom, beauticians, and customers alike - just burst out laughing :). A moment of happy normalcy for my mom...wonderful!
They had a new gal there, Theresa. And she did my mom's hair. (We keep a photo of my mom with her hair done the way she likes it in the drawer at this little 4-booth salon, because she's no longer able to articulate her preferences.) Beautiful Theresa had dark hair with a wide streak of blue running through it - very cute on her. She had my mom's photo but had a question about it, and asked my mom to clarify something. My mother couldn't answer, so she just said, "Do whatever you want, use your imagination, I'm sure it will be fine!" Theresa said, "You don't know that, Renee, you could walk out of here with blue hair!" and without missing a beat my mom said, "Is that what happened to you?"
Everybody - including my mom, beauticians, and customers alike - just burst out laughing :). A moment of happy normalcy for my mom...wonderful!
Friday, October 8, 2010
A Good Description of Lewy Body Dementia
(If you click on the title of this post it should take you to the article.)
This is what my mom has. I've discussed it here before. And these are her symptoms, pretty much. She is just at the very beginning of possibly showing signs of parkinsonism, and is developing the "lewy lean" while walking as well as sitting.
This article was shared by the owner of the Lewy Body support group on yahoogroups. If you have a loved one that has been diagnosed with dementia or Alzheimer's that exhibits these symptoms, please find a "lewy-savvy" neurologist to re-evaluate them. If indeed LBD is diagnosed, there are often ways to manage their symptoms and increase their quality of life. Plus, an accurate diagnosis is important in keeping them from being injured, or dying, from getting the wrong meds.
Getting a proper diagnosis and a good solid med regimen, as well as the work that the nursing home has done - and is doing - with her on a daily basis, has literally given my mother back to me. I've had 2 years so far that I wouldn't have had, had I settled for the doctor's "all dementias are the same, you're wasting your time going to a specialist, he'll tell you the same thing!" statement.
This is what my mom has. I've discussed it here before. And these are her symptoms, pretty much. She is just at the very beginning of possibly showing signs of parkinsonism, and is developing the "lewy lean" while walking as well as sitting.
This article was shared by the owner of the Lewy Body support group on yahoogroups. If you have a loved one that has been diagnosed with dementia or Alzheimer's that exhibits these symptoms, please find a "lewy-savvy" neurologist to re-evaluate them. If indeed LBD is diagnosed, there are often ways to manage their symptoms and increase their quality of life. Plus, an accurate diagnosis is important in keeping them from being injured, or dying, from getting the wrong meds.
Getting a proper diagnosis and a good solid med regimen, as well as the work that the nursing home has done - and is doing - with her on a daily basis, has literally given my mother back to me. I've had 2 years so far that I wouldn't have had, had I settled for the doctor's "all dementias are the same, you're wasting your time going to a specialist, he'll tell you the same thing!" statement.
Friday, June 4, 2010
Sisters Reunited!
My mother, who has lewy body dementia, hadn't seen her older sister, and only sibling, who suffers from Alzheimer's disease, in 8 years. But for months has been asking how she could reach her to talk to her. I've provided both the phone number and the address numerous, but both are lost and forgotten within minutes.
My cousin advised me a couple of weeks ago that she and her parents would be in the area this week, so we arranged a dinner last night at Coyles. Included were my husband and me, my daughter and toddler grandson, my sister and her 2 daughters, and of course my cousin and her parents.
The entire week before the event I reminded my mother continually about it, although within minutes it was forgotten so the next time I mentioned it, it was new news to her. Yesterday we picked her up in the afternoon from the nursing home where she resides, and told her yet again about the dinner. Within an hour or so, though, my mom was wanting to go back and spiraling down into some of her more miserable (to her) behaviors, wanting to leave "the home" as she calls it, get a job and a car, and once again have her independence. I was able to divert her attention at first back to the evening's plans but it became increasingly difficult to dissuade her as the afternoon wore on. I finally told her - yet again - about the dinner with her sister, and said we could talk about all those things afterward; every time I had to repeat it, that worked!
Fast forward to the restaurant. We were the first to arrive, and at our table. I kept the conversation on the purpose of us being there, that my aunt would be arriving soon, etc...purposely not giving her time to forget. Then my aunt came around the corner. Instantly my mom ran the length of the room, crying, and threw her arms around her sister. My aunt didn't know who my mom was at first, and had to be reminded during the course of the evening, but they sat together and talked and talked and talked!
I don't want to write too much about my aunt, for the sake of her privacy, and I'm also omitting a lot of details about my mother - as I often do - for the same reason. But it was helpful that our waitress used to work in the kitchen where my mom lives, and knew her. (No such thing as a coincidence in the life of a Christian, thank you Lord for that!) I was seated opposite my mom, as she gets anxious when I'm out of sight in public, and was privy to their conversations. Many times the conversation made no sense to me - or to each other - but that didn't matter, because they were together, they were talking, and that's what it was all about. I got a lot of photos - a LOT of photos, and will get prints for each of them, hopefully thereby helping them to remember the evening.
One of the things that I observed was how different Alzheimers and LBD victims are in their responses. For example, my mom was able to showtime for a while, and her animated personality was completely intact even when she was talking about things that only exist in her own mind. My aunt still had the same mannerisms and gestures and personality, but all were "faded" - a shadow of the last time I saw her. It was still her, but in a much more subdued state. Another thing was that, whereas my mom will talk as if everything she's saying is absolutely real, my aunt was much more tentative, as if she didn't quite understand, and constantly looking to her husband and her daughter for help in understanding. Where she would start on one subject and ramble through several more in as many sentences, my mom doggedly stays on a single subject and won't let go.
Of course, I can't say that all of these differences are attributable to their respective diseases. But these 2 ladies have always been nearly mirror images of each other, which heightens even more the opposite behaviors they are now exhibiting. It was an amazing lesson.
The hard part for me to hear was when my mom was begging my aunt and uncle to let her move downstate with them, to live with them while she found a job and got back on her feet. She spoke of "the home" as a place where she's been stowed, and anytime she thought I wasn't listening, would lean in close to them and almost beg them to rescue her from the life she now has. That is, again, one of the cruelties of LBD - the knowledge of what is wrong but the inability to understand or deal with it. Some of the time she's a happy little girl, with all of her friends at "the home", like a big party, and no cares, and nothing could be better. Other times she rages because she can't process anything that's going on around her, except to KNOW that she is the victim of it all, and in danger. And then there are these times, where she knows something is wrong yet feels, thinks, and believes that she is normal and if only she were given her life back (her words) she could put it to right - it is these times which are the most difficult...
But there were a lot of happy tears, and a lot of things that are funny only to the stressed caregivers like my cousin and I. It was a wonderful night, and I only hope that my mom can remember it today. We are hopefully planning another one for next month. Now that my mom has no real concept of time, it will be like another reunion of 2 long-separated sisters, and she can enjoy it all over again :).
My cousin advised me a couple of weeks ago that she and her parents would be in the area this week, so we arranged a dinner last night at Coyles. Included were my husband and me, my daughter and toddler grandson, my sister and her 2 daughters, and of course my cousin and her parents.
The entire week before the event I reminded my mother continually about it, although within minutes it was forgotten so the next time I mentioned it, it was new news to her. Yesterday we picked her up in the afternoon from the nursing home where she resides, and told her yet again about the dinner. Within an hour or so, though, my mom was wanting to go back and spiraling down into some of her more miserable (to her) behaviors, wanting to leave "the home" as she calls it, get a job and a car, and once again have her independence. I was able to divert her attention at first back to the evening's plans but it became increasingly difficult to dissuade her as the afternoon wore on. I finally told her - yet again - about the dinner with her sister, and said we could talk about all those things afterward; every time I had to repeat it, that worked!
Fast forward to the restaurant. We were the first to arrive, and at our table. I kept the conversation on the purpose of us being there, that my aunt would be arriving soon, etc...purposely not giving her time to forget. Then my aunt came around the corner. Instantly my mom ran the length of the room, crying, and threw her arms around her sister. My aunt didn't know who my mom was at first, and had to be reminded during the course of the evening, but they sat together and talked and talked and talked!
I don't want to write too much about my aunt, for the sake of her privacy, and I'm also omitting a lot of details about my mother - as I often do - for the same reason. But it was helpful that our waitress used to work in the kitchen where my mom lives, and knew her. (No such thing as a coincidence in the life of a Christian, thank you Lord for that!) I was seated opposite my mom, as she gets anxious when I'm out of sight in public, and was privy to their conversations. Many times the conversation made no sense to me - or to each other - but that didn't matter, because they were together, they were talking, and that's what it was all about. I got a lot of photos - a LOT of photos, and will get prints for each of them, hopefully thereby helping them to remember the evening.
One of the things that I observed was how different Alzheimers and LBD victims are in their responses. For example, my mom was able to showtime for a while, and her animated personality was completely intact even when she was talking about things that only exist in her own mind. My aunt still had the same mannerisms and gestures and personality, but all were "faded" - a shadow of the last time I saw her. It was still her, but in a much more subdued state. Another thing was that, whereas my mom will talk as if everything she's saying is absolutely real, my aunt was much more tentative, as if she didn't quite understand, and constantly looking to her husband and her daughter for help in understanding. Where she would start on one subject and ramble through several more in as many sentences, my mom doggedly stays on a single subject and won't let go.
Of course, I can't say that all of these differences are attributable to their respective diseases. But these 2 ladies have always been nearly mirror images of each other, which heightens even more the opposite behaviors they are now exhibiting. It was an amazing lesson.
The hard part for me to hear was when my mom was begging my aunt and uncle to let her move downstate with them, to live with them while she found a job and got back on her feet. She spoke of "the home" as a place where she's been stowed, and anytime she thought I wasn't listening, would lean in close to them and almost beg them to rescue her from the life she now has. That is, again, one of the cruelties of LBD - the knowledge of what is wrong but the inability to understand or deal with it. Some of the time she's a happy little girl, with all of her friends at "the home", like a big party, and no cares, and nothing could be better. Other times she rages because she can't process anything that's going on around her, except to KNOW that she is the victim of it all, and in danger. And then there are these times, where she knows something is wrong yet feels, thinks, and believes that she is normal and if only she were given her life back (her words) she could put it to right - it is these times which are the most difficult...
But there were a lot of happy tears, and a lot of things that are funny only to the stressed caregivers like my cousin and I. It was a wonderful night, and I only hope that my mom can remember it today. We are hopefully planning another one for next month. Now that my mom has no real concept of time, it will be like another reunion of 2 long-separated sisters, and she can enjoy it all over again :).
Tuesday, May 18, 2010
The Cruelty of Lewy Body Dementia, Part II
I talked about LBD a little bit yesterday, and now want to share some experience with my mom.
After she was first diagnosed, and after her meds were adjusted (this took several months), she was fairly high functioning. She had short-term memory issues, but was able to carry on a conversation without repeating herself most of the time; she took care of herself, including using makeup and doing her hair on a daily basis, plus she did her nails, dressed carefully, and continued on as she always had in her personal habits. We went out several times a week, and she loved getting her hair done or going out for lunch or shopping.
As time has gone on, naturally her level of functioning has decreased with the progression of the disease, with severe dips when she has a UTI (these are VERY common in LBDers) or when she needs a med adjustment. These are addressed as quickly as possible, to restore her to a better state of mind as well as level of functioning. However, the LBD marches on, stealing more and more of her abilities. She no longer wears makeup, and will wear the same clothes for days at a time if allowed, although she does do her nails, and we get her hair done twice a month or so.
Now, 2 years after her initial diagnosis, she has longer and more frequent periods of confusion and frustration. The cruelty comes into play when she is in her lucid periods, and has no memory of the things she says and does when she's not lucid. She doesn't feel or believe she needs to be in a nursing home, for example, and believes she is well enough to drive a car, get a job, manage her own finances, etc. She strongly believes that, if she can't do these things, or live independently, she has no reason to live - so suicide is a recurring topic, though less so when her meds are more precise.
She's approaching another med adjustment now. In the past, she's only had them adjusted after she's become so paranoid and having such severe delusions and hallucinations that she needs immediate intervention. This time, I am seeing the signs and would like to see if all of that can be avoided. Her meds typically have needed adjusting every 6 months or so; right now, it has been 7.
Just as an example, here is a recent conversation I had with her:
Mom: I am going to leave the home and move to Florida
Me: Will you go back to the same area where you used to live?
Mom: Probably, there are a lot of jobs down there and all of my friends are there.
Me: You will stay in touch though, won't you? And let me come and visit?
Mom: Oh of course I will, and you can visit me anytime!
Me: I will miss you so much!
Mom: Where am I going? Where do I live? Where am I going to sleep tonight? Sherry, will you make sure I get home ok?
Me: Yup, we always get home ok don't me?
Mom: Oh that's right, I remember now! By the way, where is all of my money?
Me: You remember, I told you before, it is paying for your home, your medical expenses, your food...
Mom: Well I am so much better now, I can take care of those things myself, I just need a job and a car.
Me: OK, well I'll let you know if I hear of anything...
Mom: Something is NOT RIGHT about this! How did that happen, that I don't take care of my own bills anymore???
Me: I wish I remembered all of the details, mom...that was so long ago and I don't remember much since my stroke...
Mom: Oh that's right, don't worry about it honey, I can take care of it...where do I live again?
And so it goes. A couple of things I always have in mind when I'm talking to my mom: The first is that She cannot join me in my reality so I must join her in hers. There is NO WAY that she would understand reasoning or logic anymore, her brain is simply not capable, and in trying it creates frustration that quickly escalates to agitation and even combativeness in her - which is obviously counter-productive. The second is that she never remembers these conversations. I realize that she might, however, so I never say anything that can be construed as an agreement to help her in her quest for independence. Typically I will ask her about her plans, or to keep me in the loop, and she agrees to do so, but I don't tell her I will help her.
(It should be noted here that I had a "cerebrovascular event" - according the official diagnosis - in the fall of 2008. She can't understand that, or what it means - heck, I don't even know exactly what they mean by that - so just saying "stroke" is easier, and gives me a way out of a discussion that has no place to go but down.)
The biggest consideration for our mom, my sister and I agree, is that she be kept as content as possible. Early on in the disease, she was told the facts about LBD, her home, her car, her finances, her massive collection of beautiful clothes about which she was so proud, etc. There is no sense in repeating all of it continually, as it only brings her pain and sadness. And many times she's not able to understand it anyway. (ie, there is no room for thousands of pieces of clothing in her half-closet space - she still thinks she should have ALL of her clothes with her, and can't comprehend that there simply isn't space there.) So we have stories that we tell her - "Mom your clothes are all at Gwen's, carefully packed and stored, and they are safe" - about each of her concerns. Whether 100% truthful or not, these are words that keep her more calm and therefore content, and that is our goal throughout the course of this disease. The same with her meds. It is our goal that they promote tranquility over lucidity. Since there is such a fine line with meds in LBDers, when there is a choice between cognition and calm, we will choose calm every time. She is gradually losing her cognition anyway; trying to hang onto increasingly shorter periods of understanding for a few more weeks is futile. But we don't know how much longer she will live with LBD - it could be years - and we don't want her in misery from ANY cause during that time, if it could possibly be avoided.
I hope that in sharing my experiences with my mom on occasion, you will gain some understanding of the unique challenges of LBD. In my next LBD-related post I will share some more resources for more information.
Thanks for reading, and thanks for caring :).
After she was first diagnosed, and after her meds were adjusted (this took several months), she was fairly high functioning. She had short-term memory issues, but was able to carry on a conversation without repeating herself most of the time; she took care of herself, including using makeup and doing her hair on a daily basis, plus she did her nails, dressed carefully, and continued on as she always had in her personal habits. We went out several times a week, and she loved getting her hair done or going out for lunch or shopping.
As time has gone on, naturally her level of functioning has decreased with the progression of the disease, with severe dips when she has a UTI (these are VERY common in LBDers) or when she needs a med adjustment. These are addressed as quickly as possible, to restore her to a better state of mind as well as level of functioning. However, the LBD marches on, stealing more and more of her abilities. She no longer wears makeup, and will wear the same clothes for days at a time if allowed, although she does do her nails, and we get her hair done twice a month or so.
Now, 2 years after her initial diagnosis, she has longer and more frequent periods of confusion and frustration. The cruelty comes into play when she is in her lucid periods, and has no memory of the things she says and does when she's not lucid. She doesn't feel or believe she needs to be in a nursing home, for example, and believes she is well enough to drive a car, get a job, manage her own finances, etc. She strongly believes that, if she can't do these things, or live independently, she has no reason to live - so suicide is a recurring topic, though less so when her meds are more precise.
She's approaching another med adjustment now. In the past, she's only had them adjusted after she's become so paranoid and having such severe delusions and hallucinations that she needs immediate intervention. This time, I am seeing the signs and would like to see if all of that can be avoided. Her meds typically have needed adjusting every 6 months or so; right now, it has been 7.
Just as an example, here is a recent conversation I had with her:
Mom: I am going to leave the home and move to Florida
Me: Will you go back to the same area where you used to live?
Mom: Probably, there are a lot of jobs down there and all of my friends are there.
Me: You will stay in touch though, won't you? And let me come and visit?
Mom: Oh of course I will, and you can visit me anytime!
Me:
Mom: Where am I going? Where do I live? Where am I going to sleep tonight? Sherry, will you make sure I get home ok?
Me: Yup, we always get home ok don't me?
Mom: Oh that's right, I remember now! By the way, where is all of my money?
Me: You remember, I told you before, it is paying for your home, your medical expenses, your food...
Mom: Well I am so much better now, I can take care of those things myself, I just need a job and a car.
Me: OK, well I'll let you know if I hear of anything...
Mom:
Me: I wish I remembered all of the details, mom...that was so long ago and I don't remember much since my stroke...
Mom: Oh that's right, don't worry about it honey, I can take care of it...where do I live again?
And so it goes. A couple of things I always have in mind when I'm talking to my mom: The first is that She cannot join me in my reality so I must join her in hers. There is NO WAY that she would understand reasoning or logic anymore, her brain is simply not capable, and in trying it creates frustration that quickly escalates to agitation and even combativeness in her - which is obviously counter-productive. The second is that she never remembers these conversations. I realize that she might, however, so I never say anything that can be construed as an agreement to help her in her quest for independence. Typically I will ask her about her plans, or to keep me in the loop, and she agrees to do so, but I don't tell her I will help her.
(It should be noted here that I had a "cerebrovascular event" - according the official diagnosis - in the fall of 2008. She can't understand that, or what it means - heck, I don't even know exactly what they mean by that - so just saying "stroke" is easier, and gives me a way out of a discussion that has no place to go but down.)
The biggest consideration for our mom, my sister and I agree, is that she be kept as content as possible. Early on in the disease, she was told the facts about LBD, her home, her car, her finances, her massive collection of beautiful clothes about which she was so proud, etc. There is no sense in repeating all of it continually, as it only brings her pain and sadness. And many times she's not able to understand it anyway. (ie, there is no room for thousands of pieces of clothing in her half-closet space - she still thinks she should have ALL of her clothes with her, and can't comprehend that there simply isn't space there.) So we have stories that we tell her - "Mom your clothes are all at Gwen's, carefully packed and stored, and they are safe" - about each of her concerns. Whether 100% truthful or not, these are words that keep her more calm and therefore content, and that is our goal throughout the course of this disease. The same with her meds. It is our goal that they promote tranquility over lucidity. Since there is such a fine line with meds in LBDers, when there is a choice between cognition and calm, we will choose calm every time. She is gradually losing her cognition anyway; trying to hang onto increasingly shorter periods of understanding for a few more weeks is futile. But we don't know how much longer she will live with LBD - it could be years - and we don't want her in misery from ANY cause during that time, if it could possibly be avoided.
I hope that in sharing my experiences with my mom on occasion, you will gain some understanding of the unique challenges of LBD. In my next LBD-related post I will share some more resources for more information.
Thanks for reading, and thanks for caring :).
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