Lewy Body dementia is peculiar in that it comes with fluctuations in cognition.
Don't believe me, check out this lbda link they have all the technical/medical info about lewy and then some.
Hubby has had plenty of fluctuations in cognition. They can last anywhere from a few moments to days. He can go from completely confused that he is in his own house to describing how we built it and back to wondering where we are all in the span of a few moments, or over the course of a few hrs or days.
We've had a huge positive fluctuation over the course of several weeks.
Hubby had even seemed "better". His mobility and memory were
improved greatly. He could carry on a detailed conversation. He was remembering things even I had forgotten. He was walking without the use of any assistance. Long distances at that. Long, as in from the car to the inside of a local eating establishment and back out.
We had the occasional "blips" but nothing that wasn't quickly recovered from.
then, the bottom
fell out.
In my heart I knew it would be coming because that's what Lewy
does, it tricks you.
It tricked Hubby. He was so aware that he was feeling better. He was convinced he WAS getting better. He commented on how good he was doing and that he thought he was "going to beat this". It was heartbreaking to hear him talk like that because I was staying poised for the decline and
unable to REALLY enjoy the moments of clarity. But, the one day I let my guard down we
ended up in a physical altercation in the car.
The day started out fine. We made plans to go to town. I got him shaved, something he still wasn't able to do and he dressed himself.
Once we got into town, Hubby became angry at me
because he had decided he was feeling well enough that he wanted to move out and wanted to see a lawyer. I refused to take him. Instead I turned the car around and headed home. Our day out turned into a fight for the keys and steering while
we were driving. We are blessed that we live in a very small town with very little traffic. My anxiety went into overdrive and the fight over the keys resulted in Hubby getting a scratch injury from the key ring. We've been through this type of behavior before but it's been about 3 yrs. And to be honest, it feels like we had gone back in time 3 yrs but I did not want to relive those 3 years again.
Over the last few days we have skipped ahead. We are back to angry and hurtful words.
I guess I'll take the reality as opposed to the false hope.
This is dementia, it's not just a memory problem. My husband was diagnosed with Lewy Body Dementia in Oct 2007. This is our story. The ups and downs, the sorrows and joys. A non clinical view of living the Lewy life. Our story ended Feb 11, 2014. Lewy Body dementia hasn't been cured yet so until it is, this blog will be timeless in it's approach to caregiving, love and faith. It's a daily approach to those things.
Disclaimer
This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.
This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.
This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.
Showing posts with label lbda.org. Show all posts
Showing posts with label lbda.org. Show all posts
Friday, April 26, 2013
Thursday, January 24, 2013
Dr Grumpy
In all of my married life, 31 yrs, Hubby has had maybe 3 ER visits for himself. broken ribs (fast shower half time of a football game), asthma attack and kidney stone (hated seeing him like that but funny as all get out when he got some loopy meds).
But in the last few months, Lewy had sent us to the ER 3 times.
Lewy Body Dementia presents itself with symptoms of Parkinson's Disease.
From the lbda.org website Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
Hubby lives with all of these symptoms and the one that scares me, is the falling.
As a matter of fact, it was the falling that made me decide to seek Home Health Care. The day I was gone from home and returned to evidence Hubby had fallen but even worse, Hubby didn't remember what he had hit. You can read about "That Wash Woman" Here.
Hubby had taken a fall in the bathroom the other night.
He's taken some doozies in the past but always was determined that he didn't need to go to the Dr. Our stubborn heads butted many times about this. He won all the times but 2. This last time he didn't even argue and agreed to a late night visit to the ER. You know it was bad when he said yes.
His complaint was his back, we called the ambulance for transport. I grabbed our Emergency Bag and the Folder I had put together with Hubby's info. See my folder items here.
When the ambulance arrived I gave them the short version of the situation and about Lewy. They loaded Hubby and turned to me for info and I smiled really BIG, handed them the folder and declared, I'm about to make your night! And apparently I did because the look of confusion went to delight when they realized the treasure trove of information they had and it was theirs to keep! They went on and on about it :)
Hmm, now I wonder if I should have been all smiles while they were wheeling my husband off to the ambulance for a trip to the hospital. #visiblyconcernedwifefail
Next stop the ER. I went inside to present Hubby's info as the EMT personnel carried Hubby to the back. I was informed that I would be notified when they had him in a room. I politely took a seat away from as many of the obviously sick wall to wall people in the waiting room. Seriously, the flu has hit our area hard. And a posted sign stated that the wait time for minor cases was going to be 3 hrs. ! People just kept coming as I sat there.
As I waited patiently to be notified what room Hubby was in, I overheard one man I truly believed was not a minor case as he spoke loudly and rudely to his grandmother on the phone. I doubted it wasn't his finger he needed looked at. It was obvious he needed a serious attitude adjustment, and quick! >:|
After a 20 min wait I finally walked back up to the desk and asked about Hubby's room. I was buzzed through and Hubby had already been to and back from X-ray.
Everyone that worked with Hubby or had contact with us was very kind and concerned and attentive. It surprised Hubby to learn that the man that came in and told us who the Dr would be and took Hubby's vitals was his nurse.
Hubby asked "Who was that?" I explained it was his nurse and Hubby was confused and I laughed when he said "That GUY?"
Yep Hubby, men are nurses too. LOL!!
Another man marched into the room. The results were in and they showed a very small fracture to Hubby's T12 vertebrae. The man held up his fingers to show the approximate size of the fracture. He gruffly continued, There was no danger of any spinal cord injury to worry about. It's going to hurt like crazy, but if you think he can tolerate the pain take him home and give him meds. The man quizzed me on meds and I gave him a short lesson on Lewy and pain meds and what Hubby was already taking. At this point I'm deciding this must be the Dr. I didn't see a name tag so I named him Dr Grumpy in my head. Dr Grumpy told me to double Hubby's current meds for his pain, then he turned and marched out. No hello, no goodbye from Dr Grumpy.
I didn't let Dr Grumpy or the circumstances distress me, I actually saw a positive in the situation. Since we have to live with Lewy Body Dementia I use every opportunity to educate about it. This was Hubby's first trip to the ER in the night. This meant a new group of people to meet and share. I did.
Hubby was discharged for home.
Between Hubby's shot of Demerol at the hosp and his pain meds at home he slept the rest of the night. Good for us both.
The next day Hubby did well, still in pain but he slept most of the day.
Then the night came.
Hubby was calling out every couple of hours, even in his sleep. Neither of us rested well.
I have a call in to his PCP to see if we can do something else for the pain.
Of course I'm worried about meds and worsening cognition changes but after last night I'll do whatever we need to keep Hubby pain free. I'm praying hard.
Today Hubby is still suffering with pain and is extra extra needy.
I'm afraid to touch him because he hollers out but he needs my help with everything. Like getting up to go to the bathroom, getting in and out of the bed and the wheelchair, covering up and most recently he called me to help him divide a piece of candy evenly for the dogs to share. Really Hubby?! :/ LOL!
But in the last few months, Lewy had sent us to the ER 3 times.
Lewy Body Dementia presents itself with symptoms of Parkinson's Disease.
From the lbda.org website Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
Hubby lives with all of these symptoms and the one that scares me, is the falling.
As a matter of fact, it was the falling that made me decide to seek Home Health Care. The day I was gone from home and returned to evidence Hubby had fallen but even worse, Hubby didn't remember what he had hit. You can read about "That Wash Woman" Here.
Hubby had taken a fall in the bathroom the other night.
He's taken some doozies in the past but always was determined that he didn't need to go to the Dr. Our stubborn heads butted many times about this. He won all the times but 2. This last time he didn't even argue and agreed to a late night visit to the ER. You know it was bad when he said yes.
His complaint was his back, we called the ambulance for transport. I grabbed our Emergency Bag and the Folder I had put together with Hubby's info. See my folder items here.
When the ambulance arrived I gave them the short version of the situation and about Lewy. They loaded Hubby and turned to me for info and I smiled really BIG, handed them the folder and declared, I'm about to make your night! And apparently I did because the look of confusion went to delight when they realized the treasure trove of information they had and it was theirs to keep! They went on and on about it :)
Hmm, now I wonder if I should have been all smiles while they were wheeling my husband off to the ambulance for a trip to the hospital. #visiblyconcernedwifefail
Next stop the ER. I went inside to present Hubby's info as the EMT personnel carried Hubby to the back. I was informed that I would be notified when they had him in a room. I politely took a seat away from as many of the obviously sick wall to wall people in the waiting room. Seriously, the flu has hit our area hard. And a posted sign stated that the wait time for minor cases was going to be 3 hrs. ! People just kept coming as I sat there.
As I waited patiently to be notified what room Hubby was in, I overheard one man I truly believed was not a minor case as he spoke loudly and rudely to his grandmother on the phone. I doubted it wasn't his finger he needed looked at. It was obvious he needed a serious attitude adjustment, and quick! >:|
After a 20 min wait I finally walked back up to the desk and asked about Hubby's room. I was buzzed through and Hubby had already been to and back from X-ray.
Everyone that worked with Hubby or had contact with us was very kind and concerned and attentive. It surprised Hubby to learn that the man that came in and told us who the Dr would be and took Hubby's vitals was his nurse.
Hubby asked "Who was that?" I explained it was his nurse and Hubby was confused and I laughed when he said "That GUY?"
Yep Hubby, men are nurses too. LOL!!
Another man marched into the room. The results were in and they showed a very small fracture to Hubby's T12 vertebrae. The man held up his fingers to show the approximate size of the fracture. He gruffly continued, There was no danger of any spinal cord injury to worry about. It's going to hurt like crazy, but if you think he can tolerate the pain take him home and give him meds. The man quizzed me on meds and I gave him a short lesson on Lewy and pain meds and what Hubby was already taking. At this point I'm deciding this must be the Dr. I didn't see a name tag so I named him Dr Grumpy in my head. Dr Grumpy told me to double Hubby's current meds for his pain, then he turned and marched out. No hello, no goodbye from Dr Grumpy.
I didn't let Dr Grumpy or the circumstances distress me, I actually saw a positive in the situation. Since we have to live with Lewy Body Dementia I use every opportunity to educate about it. This was Hubby's first trip to the ER in the night. This meant a new group of people to meet and share. I did.
Hubby was discharged for home.
Between Hubby's shot of Demerol at the hosp and his pain meds at home he slept the rest of the night. Good for us both.
The next day Hubby did well, still in pain but he slept most of the day.
Then the night came.
Hubby was calling out every couple of hours, even in his sleep. Neither of us rested well.
I have a call in to his PCP to see if we can do something else for the pain.
Of course I'm worried about meds and worsening cognition changes but after last night I'll do whatever we need to keep Hubby pain free. I'm praying hard.
Today Hubby is still suffering with pain and is extra extra needy.
I'm afraid to touch him because he hollers out but he needs my help with everything. Like getting up to go to the bathroom, getting in and out of the bed and the wheelchair, covering up and most recently he called me to help him divide a piece of candy evenly for the dogs to share. Really Hubby?! :/ LOL!
Thursday, October 20, 2011
Anniversary ..of sorts
Oct 18 was our anniversary.
Not the wedding type, the diagnosis type.
4 yrs ago we sat in the Veterans Hospital in the Neurologists exam room coming face to face with the official diagnosis of Probable Diffuse Lewy Body Dementia.
A few months prior the Neuro Dr had suggested it could be 1 of 2 things but more time, testing and drug trial was necessary.
I researched and scoured everything I could find on both.
My heart of hearts told me that the diagnosis would be Lewy Body, my heart of hearts took a major hit when I was correct.
To me, it felt like all the air had been sucked out of my chest.
To Hubby, I have no idea how he felt. He appeared emotionless.
He never wanted to talk about it so we didn't.
I wanted to learn everything I could, for Hubby and for me.
At this point I am going to make a suggestion to watch the new STARZ OriginalSeries, BOSS.
Kelsey Grammer, as the main character, gets a diagnosis of Lewy Body Dementia.
THE FIRTS 5 MINS ARE WORTH THE WATCH for the education of Lewy Body BUT BE ADVISED This video is rated MA for GOOD REASON. After the first 5 mins it lives WAY up to it's rating.
Don't say I didn't tell you.
The show IS sensationalized. It is STARZ and not the Hallmark channel.
It's RAW and gritty. It's TV and they want the rating and to stick around for a few seasons.
You can watch episode 1 >>> HERE <<< You will be prompted for your birth date because it is rated MA.
Of course I did have 1 issue with the show, Lewy Body Dementia is NOT rare.
Lewy Body Dementia is the 2nd most common form of dementia after Alzheimer.
I suppose it is rare that it is diagnosed properly and that many health care professionals are familiar with it, which is a shame, but is it NOT rare.
I do appreciate STARZ for helping spread the word Lewy Body and if you would like more info about Lewy Body Dementia check out the lbda.org website or click >>> HERE <<<
So imagine yourself or a loved one sitting in front of the Physician as you hear the words Lewy Body and the description that followed it.
I wish I knew what Hubby felt. He was emotionless he had no questions, perhaps he zoned out, perhaps he went into a self defense mode and blocked out the words. Only God knows.
For me, the words seemed to get farther and farther away as the air was being sucked out of my chest.
Even though I thought I was prepared, I wasn't.
I could feel my heartbeat.
I remember saying OK, now what?
After that I don't remember.
I remember the ride home was silent in the car but not in my head.
That was 4 yrs ago.
I have learned a lot.
About Lewy, about Hubby, about friends and family and about me.
It's not a life lesson I would have chose for myself but God has plans for us.
Plans for Lewy, Hubby, family and friends and me.
I will trust Him and learn.
One lesson I have learned is about Respite.
It's been 4 yrs of caregiving without a complete break.
It's beginning to take a toll on me.
It's noticeable.
My fears kept me from making that very important call but I did finally make it.
There was much anxiety in the pressing of the buttons.
I actually started dialing once and hung up. I chastised myself and redialed.
The funny (HA HA) thing is that NOBODY was available to take my call.
All stressed up and nowhere to call! LOL
I didn't let that discourage me though.
I called back, SEVERAL times.
It became my mission to get through to someone, anyone!
When I FINALLY did I had to leave a message for a return call. Which I missed when I had to run an errand so I called again resulting in phone tag. My message was
"Hi *Respite Lady*, this is Kathy returning your call about you returning my call and I suppose this is now phone tag so TAG your it! Please call #-#-# Thanks and have a great day, Bye!" My byes end on an up tone :)
A couple hrs later my phone rang and real life connection to Respite Lady was made.
I learned that respite from the Veterans Assoc is given at the VA Hosp.
It can actually be made every few months with a minimum of 1 week and and a max of 2 weeks at a time.
Why I originally thought it was Mon-Fri is unknown to me, anyway.
Respite Lady said intake would be about an hr long and I could bring Hubby during morning hrs and pick him up in the afternoon.
I asked about a waiting list knowing it was possible that he would have to wait a couple months or so. Imagine my surprise when I learned that the ward Hubby would be on, would be able to deal with not only Hubby's dementia but also Hubby's PTSD, and is almost always readily available within a day or so and if I wanted I could bring him Mon.
MON?!!! I got light headed, my heart sank, my throat closed, my pulse raced. I wasn't ready for Mon!
I prepared myself for the waiting list! Not Mon! No, No, No, I couldn't do Mon!
Respite Lady was very sweet and understood perhaps my change in tone when she volunteered that I could sleep on it and get back with her about a time.
Myself, even though I wasn't ready for Monday, knew if I didn't do make a plan now, I may not do it so I grabbed my calendar and stumbled around with my words to work around Dr Appointments and finally came to an agreed time in the next couple weeks.
I only wanted a one week respite though.
I can make a Dr appointment (haven't seen one since before Hubby's diagnosis!)
I can do some leisurely Christmas shopping with my Sister in law.
I can sleep all night without getting beat up by Hubby's REM sleep disorder.
Brother in Law and I can go catch a movie.
The possibilities are many.
Should I feel bad that I feel good about this?
I'm conflicted.
Then there is the flip side.
I will tell Hubby that he will be admitted for a week to watch him and see how he is doing with his meds.
I will of course wait until much closer to the date.
I will also schedule this stay with a Nero appointment right on it's heels.
I worry he will be angry with me for leaving him if he knows it's respite.
I worry he will try SHOWTIME (best behavior which IS possible for LBD patients) and leave the facility.
Will he get upset and need medicated?
The possibilities are many.
Should I feel anxious about this?
I'm again conflicted.
So as we have to to deal with each day as it comes, sometimes each moment, I am going to TRY and not get too far ahead of myself in the good feelings or the bad feelings and just live in the moment.
I'm a risk taker!!
Not the wedding type, the diagnosis type.
4 yrs ago we sat in the Veterans Hospital in the Neurologists exam room coming face to face with the official diagnosis of Probable Diffuse Lewy Body Dementia.
A few months prior the Neuro Dr had suggested it could be 1 of 2 things but more time, testing and drug trial was necessary.
I researched and scoured everything I could find on both.
My heart of hearts told me that the diagnosis would be Lewy Body, my heart of hearts took a major hit when I was correct.
To me, it felt like all the air had been sucked out of my chest.
To Hubby, I have no idea how he felt. He appeared emotionless.
He never wanted to talk about it so we didn't.
I wanted to learn everything I could, for Hubby and for me.
At this point I am going to make a suggestion to watch the new STARZ OriginalSeries, BOSS.
Kelsey Grammer, as the main character, gets a diagnosis of Lewy Body Dementia.
THE FIRTS 5 MINS ARE WORTH THE WATCH for the education of Lewy Body BUT BE ADVISED This video is rated MA for GOOD REASON. After the first 5 mins it lives WAY up to it's rating.
Don't say I didn't tell you.
The show IS sensationalized. It is STARZ and not the Hallmark channel.
It's RAW and gritty. It's TV and they want the rating and to stick around for a few seasons.
You can watch episode 1 >>> HERE <<< You will be prompted for your birth date because it is rated MA.
Of course I did have 1 issue with the show, Lewy Body Dementia is NOT rare.
Lewy Body Dementia is the 2nd most common form of dementia after Alzheimer.
I suppose it is rare that it is diagnosed properly and that many health care professionals are familiar with it, which is a shame, but is it NOT rare.
I do appreciate STARZ for helping spread the word Lewy Body and if you would like more info about Lewy Body Dementia check out the lbda.org website or click >>> HERE <<<
So imagine yourself or a loved one sitting in front of the Physician as you hear the words Lewy Body and the description that followed it.
I wish I knew what Hubby felt. He was emotionless he had no questions, perhaps he zoned out, perhaps he went into a self defense mode and blocked out the words. Only God knows.
For me, the words seemed to get farther and farther away as the air was being sucked out of my chest.
Even though I thought I was prepared, I wasn't.
I could feel my heartbeat.
I remember saying OK, now what?
After that I don't remember.
I remember the ride home was silent in the car but not in my head.
That was 4 yrs ago.
I have learned a lot.
About Lewy, about Hubby, about friends and family and about me.
It's not a life lesson I would have chose for myself but God has plans for us.
Plans for Lewy, Hubby, family and friends and me.
I will trust Him and learn.
One lesson I have learned is about Respite.
It's been 4 yrs of caregiving without a complete break.
It's beginning to take a toll on me.
It's noticeable.
My fears kept me from making that very important call but I did finally make it.
There was much anxiety in the pressing of the buttons.
I actually started dialing once and hung up. I chastised myself and redialed.
The funny (HA HA) thing is that NOBODY was available to take my call.
All stressed up and nowhere to call! LOL
I didn't let that discourage me though.
I called back, SEVERAL times.
It became my mission to get through to someone, anyone!
When I FINALLY did I had to leave a message for a return call. Which I missed when I had to run an errand so I called again resulting in phone tag. My message was
"Hi *Respite Lady*, this is Kathy returning your call about you returning my call and I suppose this is now phone tag so TAG your it! Please call #-#-# Thanks and have a great day, Bye!" My byes end on an up tone :)
A couple hrs later my phone rang and real life connection to Respite Lady was made.
I learned that respite from the Veterans Assoc is given at the VA Hosp.
It can actually be made every few months with a minimum of 1 week and and a max of 2 weeks at a time.
Why I originally thought it was Mon-Fri is unknown to me, anyway.
Respite Lady said intake would be about an hr long and I could bring Hubby during morning hrs and pick him up in the afternoon.
I asked about a waiting list knowing it was possible that he would have to wait a couple months or so. Imagine my surprise when I learned that the ward Hubby would be on, would be able to deal with not only Hubby's dementia but also Hubby's PTSD, and is almost always readily available within a day or so and if I wanted I could bring him Mon.
MON?!!! I got light headed, my heart sank, my throat closed, my pulse raced. I wasn't ready for Mon!
I prepared myself for the waiting list! Not Mon! No, No, No, I couldn't do Mon!
Respite Lady was very sweet and understood perhaps my change in tone when she volunteered that I could sleep on it and get back with her about a time.
Myself, even though I wasn't ready for Monday, knew if I didn't do make a plan now, I may not do it so I grabbed my calendar and stumbled around with my words to work around Dr Appointments and finally came to an agreed time in the next couple weeks.
I only wanted a one week respite though.
I can make a Dr appointment (haven't seen one since before Hubby's diagnosis!)
I can do some leisurely Christmas shopping with my Sister in law.
I can sleep all night without getting beat up by Hubby's REM sleep disorder.
Brother in Law and I can go catch a movie.
The possibilities are many.
Should I feel bad that I feel good about this?
I'm conflicted.
Then there is the flip side.
I will tell Hubby that he will be admitted for a week to watch him and see how he is doing with his meds.
I will of course wait until much closer to the date.
I will also schedule this stay with a Nero appointment right on it's heels.
I worry he will be angry with me for leaving him if he knows it's respite.
I worry he will try SHOWTIME (best behavior which IS possible for LBD patients) and leave the facility.
Will he get upset and need medicated?
The possibilities are many.
Should I feel anxious about this?
I'm again conflicted.
So as we have to to deal with each day as it comes, sometimes each moment, I am going to TRY and not get too far ahead of myself in the good feelings or the bad feelings and just live in the moment.
I'm a risk taker!!
Thursday, January 14, 2010
6 words, first word, 1 syllable, sounds like...
LBDA explains dementia as a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.
Communication problems are a major problem when dealing with anyone with a dementia problem.
If you have ever tried to talk with a person with dementia you know what I mean.
With Lewy Body the problem seems even more frustrating when a very logical conversation is happening and it suddenly changes into the a jumbled mess of nonsense leaving both me and Hubby confused as I try to sort through what he was trying to say. Sometimes I'm pretty good at understanding his needs even if what he says doesn't match up. One way conversations are becoming the norm but I still try and talk to him about things. I know he is unable to make all major decisions but when we take a rare opportunity to eat out I still tell him what is on the menu and there are even times he can make a very simple decision by answering "no" to what he doesn't want.
On those rare eating out occasions I like to take him to his familiar restaurant. A place he visited daily to have coffee with friends and shoot the breeze. Every day 3PM for several years. It is user friendly to Bobby and very attentive to our needs. Small and intimate, just what we require. Many of those friends are now deceased or have dropped out of his life for various reasons. But the restaurant is still a stomping ground he knows.
Our waitresses are patient with the length of time it takes us to decide things and finish eating. They never complain about how high maintenance we have become and they are rewarded for it.
Since communicating is so obviously difficult I have noticed that people talk to me when they want to know something about Hubby. I usually turn to Hubby, ask him if he heard what was said, repeat it in a simple but non childlike way then look back at the person. Not only have I noticed this at eating establishments but also the Dr offices, or when we run into people we know and I am not happy about it. I wish that people understood that Hubby is not invisible. He is still in there, locked in someplace. He just can't get out.
Hubby has lost so many "friends" (actual and so called) as mentioned. Death, fear, the opportunity to take advantage now gone, their own lives and hardships and many more reasons I am sure keep them away. This breaks my heart.
One of the more important things I wish to learn from this life experience it is that I want to be a better friend. I pray I do learn that, I pray I have been doing that even in my limited ability by reaching out to others in need, being an e-shoulder or an e-ear. I want to be the friend the Bible teaches me to be.
Proverbs 17:7(a) ; A friend loves at all times...
Communication problems are a major problem when dealing with anyone with a dementia problem.
If you have ever tried to talk with a person with dementia you know what I mean.
With Lewy Body the problem seems even more frustrating when a very logical conversation is happening and it suddenly changes into the a jumbled mess of nonsense leaving both me and Hubby confused as I try to sort through what he was trying to say. Sometimes I'm pretty good at understanding his needs even if what he says doesn't match up. One way conversations are becoming the norm but I still try and talk to him about things. I know he is unable to make all major decisions but when we take a rare opportunity to eat out I still tell him what is on the menu and there are even times he can make a very simple decision by answering "no" to what he doesn't want.
On those rare eating out occasions I like to take him to his familiar restaurant. A place he visited daily to have coffee with friends and shoot the breeze. Every day 3PM for several years. It is user friendly to Bobby and very attentive to our needs. Small and intimate, just what we require. Many of those friends are now deceased or have dropped out of his life for various reasons. But the restaurant is still a stomping ground he knows.
Our waitresses are patient with the length of time it takes us to decide things and finish eating. They never complain about how high maintenance we have become and they are rewarded for it.
Since communicating is so obviously difficult I have noticed that people talk to me when they want to know something about Hubby. I usually turn to Hubby, ask him if he heard what was said, repeat it in a simple but non childlike way then look back at the person. Not only have I noticed this at eating establishments but also the Dr offices, or when we run into people we know and I am not happy about it. I wish that people understood that Hubby is not invisible. He is still in there, locked in someplace. He just can't get out.
Hubby has lost so many "friends" (actual and so called) as mentioned. Death, fear, the opportunity to take advantage now gone, their own lives and hardships and many more reasons I am sure keep them away. This breaks my heart.
One of the more important things I wish to learn from this life experience it is that I want to be a better friend. I pray I do learn that, I pray I have been doing that even in my limited ability by reaching out to others in need, being an e-shoulder or an e-ear. I want to be the friend the Bible teaches me to be.
Proverbs 17:7(a) ; A friend loves at all times...
Friday, December 4, 2009
He has What?
Oct 18,2007. The day that changed the course of our lives forever.
My name is Kathy and this is my attempt to blog about my husband's diagnosis of Lewy Body Dementia and how it relates to our lives.
If you are here then more than likely you have heard about Lewy.
If you are new to the Lewy life I'm sorry you needed to find the information. I'll let the LBDA link supply you with all the "technical" stuff about it. It's a very comprehensive and informative site. They are doing a great work in getting the word out and educating people about Lewy Body.
My purpose here is to journal the life of one couple, me and Bobby, loving referred to as Hubby with our struggles and joys (yes we have some joys) with Lewy.
Hang on, it's going to be a bumpy ride :)
Kathy
My name is Kathy and this is my attempt to blog about my husband's diagnosis of Lewy Body Dementia and how it relates to our lives.
If you are here then more than likely you have heard about Lewy.
If you are new to the Lewy life I'm sorry you needed to find the information. I'll let the LBDA link supply you with all the "technical" stuff about it. It's a very comprehensive and informative site. They are doing a great work in getting the word out and educating people about Lewy Body.
My purpose here is to journal the life of one couple, me and Bobby, loving referred to as Hubby with our struggles and joys (yes we have some joys) with Lewy.
Hang on, it's going to be a bumpy ride :)
Kathy
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