...but here's my take on Lewy Body Dementia.
Lewy Body dementia is a degenerative brain disease that deposits alpha synuclein plaques, also known as LewyBodies, in various places in the brain that destroy neurons causing impairment in thinking & coordination which leads to a whole lot of other issues.
I've tried to educate others as to what lewy is and what lewy does through this blog, hand out and spoken word. Yet when someone starts talking medical to me, I get lost in the language SO I began explaining it in terms I could understand.
Hubby has Lewy Body dementia. It is the second most common form of dementia after Alzheimer. It is a brain disease that has symptoms that look like Parkinsons where he shakes a lot, and some symptoms that look like Alzheimers when he has memory and/or thinking problems. One of the differences in Alzheimers and Lewy Body are the fluctuations lewy can do. You might even think the person is faking a problem because they seem so "normal" one time, "off" the next time, and back to "normal.
So, imagine a highway.
In alz, when the plaques and tangles interrupt the brain neurons trying to make a connection, the connection shuts down like a road block of quick sand. The neuron says, "Well we can't get past that" and it stops trying and eventually dies.
With Lewy, when the neurons hit a road block it keeps backing up and ramming to get through. The "off" happens while the neuron frantically tries to find a way through or around the neuron road block (lewy plaque) until it either accomplishes a detoured route, (normal) or has used up all of the options. Once it has no other options, it then dies. Probably from sheer exhaustion :/
The lewy delusions and hallucinations are like a house of mirrors and glass. In Hubby's case, most of the time he knows he is in the house of mirrors. There is more than one of certain things, things like me most of the time. Other things are distorted and confusing but, since he knows, he tells himself it's distortion or asks. This is a place I get to be also. I can see him but I can't get to him. There are occasions when he can't make the distinction. Those are the times he becomes convinced of what he sees and is sure he has found the way out. When it turns out not, he becomes agitated and angry.
I can't stop the progression. We've applied all of the slowing down we can and now our tires are worn to threads. I can only learn how to try make Hubby's life easier for him. It's a delicate balance and a LOT of trial and error in meds and action.
As easy as it can be to take his negative attitude and actions personally I MUST remind myself to keep my own self in check. I get testy and pouty and annoyed. When verbally pushed, I verbally push back. I'm not the perfect caregiver but I love deep, even if some days I don't like, I do the best I can. I try not to wallow in the negative but I can get overwhelmed. I can shut down but I always regroup, stand up and continue going. I laugh and surround myself with others that laugh. I limit negative from outside sources. I offer support the way I want to receive it. I try to care for myself. So far both Hubby and I are doing as best we can. I contribute that to the very many prayers I say throughout the day. Prayers for him and for me. It's my prescription for our happiness.
Even though I'm not a Dr, I think it's working.
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.
Sunday, April 28, 2013
Friday, April 26, 2013
False Hope
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.
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.
Sunday, April 7, 2013
Algo Para Pensar or Something to Think About
Today Hubby was watching a hispanic TV show.
That might not seem odd but neither of us speak spanish. :/
I couldn't understand anything that was said and could only pick out the times they laughed. Every now and then I recognized a word or two but the longer it was on, the more frustrated I felt and I wanted the channel changed.
This got me to thinking.
I wonder if this is how Hubby feels sometimes with language.
I wonder if this is what his world must be like when he can't understand what is happening around him or there is too much activity for his brain to sort out and respond to correctly.
It made me stop and think and I hope I remember this in the future when I find myself frustrated at him for not keeping up in a conversation or constantly asking huh.
That might not seem odd but neither of us speak spanish. :/
I couldn't understand anything that was said and could only pick out the times they laughed. Every now and then I recognized a word or two but the longer it was on, the more frustrated I felt and I wanted the channel changed.
This got me to thinking.
I wonder if this is how Hubby feels sometimes with language.
I wonder if this is what his world must be like when he can't understand what is happening around him or there is too much activity for his brain to sort out and respond to correctly.
It made me stop and think and I hope I remember this in the future when I find myself frustrated at him for not keeping up in a conversation or constantly asking huh.
Thursday, April 4, 2013
Coasting
Look Ma, No Hands!!!!!!!!!!
It seemed that for a few weeks lewy had taken a break from the havoc it can wreck.
I'm not complaining at all!
To be honest I was a little afraid to mention it for fear the coasting would run into pot holes, or sink holes would open up under us!
Even though the last few weeks had been cognitively decent for Hubby they have also been filled with other emotional struggles. A family members illness and eventual death kept me torn between home for my loved one and away for my loved ones. We are blessed that youngest daughter was willing to stay with her father so I could lend support to others.
This family situation was not one I could keep from Hubby. I was concerned how Hubby would react to this distressing sad news. I was concerned how Hubby would react to my being away so often. I was concerned for our family and the painful journey they would be taking. I couldn't take away their pain, I could only be there for them when it was possible.
I was concerned for youngest daughter taking care of her father. Not because I didn't think she could do it, she just graduated from CNA classes, but because Hubby is very needy.
Or at least that's how he is with me.
I learned that while I was away Hubby became very independent.
Instead of asking youngest daughter to do anything, and she offered many times, he refused most of her assistance and did things on his own.
Things like turning on lights, getting his own beverages, finding snacks, changing the TV channels. Oh, there were the occasions he would mess the TV up and call youngest daughter to help, or needed muscle cream applied to his neck and back and would ask for her help then.
But mostly, he got up, walked around and did for himself.
WHA?!!!!!
Are you kidding me?!
I would have never known this had I not been told because as soon as I walked in the door, it was all "honey, do".
But now that I have this knowledge, what could I do with it?
I tried and eventually failed at getting Hubby to do some things for himself since then. He was good for a day or two and just stopped. Complaints of pain and general feelings of illness took control of Hubby's physical movements. His shaking has increased. Some times he looks like he's on the last step out of a fun house. You know, that moving floor you have to cross?
So that leaves me to wonder, Maybe I am Hubby's problem ;-)
Besides the shaking Hubby has developed another issue. He has started to drool.
Not a lot but enough to make sure he has a tissue close by and reminders to wipe his mouth. He says he isn't aware it's happening.
Hubby also took a HUGE positive fluctuation in memory.
He can recall MANY things that have occurred in the course of our lifetime together. Things I had forgotten my own self until reminded.
Minor things also as well as significant one.
Lewy Body Dementia is such a strange disease.
I wish I could really, really, just enjoy the positives.
I know we should live in the moment, enjoy the day, blah blah blah. Reality can have an ugly side. I keep waiting for the fall. I made a comment to a group the other day "Somewhere between diagnosis and death there is a whole lot of good living to be done. Why does it feel like we always try to skip to the end?"
Maybe I'm protecting my heart from hurting again when Hubby once again loses the memory of our life. I don't know.
Another change in Hubby is his interest in Gospel music. I'm not saying that's a bad thing LOL!! I find it odd because Hubby is a country music guy. In the past I have offered music of various kinds for him. He would always want it turned off. They say music soothes the savage beast. Well Lewy was having NO part of being soothed, until lately.
It just seemed to me that Hubby went against everything I learned about caregiving for someone with dementia. He didn't like routine, he didn't like music, he didn't like activity, he didn't like... insert all things "tried and true" by the professionals. Was I failing because of that? No, I just realized that is Hubby's dementia.
Like the saying, Once you meet one person with dementia, you've met one person. All uniquely different.
I'm keeping to myself these days. I'm staying focused in our world, maybe too much.
For now, we coast with hands off the bars and wind in our face.
Yet ever mindful that the handle bars must be grabbed to steady on.
I feel the front tire wobbling.
Here's some glimpses into our lewy life from FaceBook.
Feb 25 : Yesterday, Hubby wanted to have a talk with me. He motioned that I sit at the end of the bed and we had a very long conversation about. Because he thought it should. He didn't want me to. We did this. So I sat and listened and responded accordingly. And when he felt like we had talked enough, he was content with how it went.
Now you may be wondering what the heck I'm talking about, right? yeah, me too.
BUT apparently it ended well so that's all that matters. :)
March 17: The MOST annoying sound in the world? Candy Wrappers at 3AM!!! Not mentioning any names though >:/
Youngest daughter asks her hubby to bring her ice cream tonight. They asked if Hubby and I wanted any. I politely declined and hubby accepted. Hubby kept asking me if I wanted some and after it arrived continued to still ask me. Several times I declined. A minute or so after receiving his, Hubby shuffled over to me and this time I was very quick to insist that I did not want any, seriously, I was fine and appreciated him wanting to share, but no thank you, in a firm tone. Then he said, I just wanted you to open it for me. Kind of rude that he didn't want to share! ;-) LOL!!!
Now he's feeding the dogs some with a spoon.
March 19:
Hubby and I are getting ready to go into town. He's struggling but I'm helping. Doing simple things like that makes him shake much more and wears him out. He made a comment about his struggle and shaking. I said I believed that doing things like that requires more mental energy from him resulting in the difficulties.
He smiled and asked, "Are you trying to say I'm using my brain too much?"
My answer: "Yes and you're not used to it."
He swatted me! LOL!!!!!!
March 23: Hubby, feeling his oats today, decided to sneak up on, grab and scare me. Not a good thing to do because in fight or flight mode, I fight. I hit him in self defense and nearly knocked him down. oopsie! LOL!! I better check him for black and blue marks later.
March 31: Hubby shares EVERYTHING he gets to eat with the dogs. He will even chase them down with a spoon or fork full of something so they can have a bite and at times he will try to force feed them. Nothing I say seems to deter him. Not even a sick dog :P
Tonight is no exception, he's eating cake and ice cream and sharing. Deciding he needed more because the dogs were eating it all, I finally try to put down my foot about it and it worked, until I walked out of the room and he gave them the last bite. LOL!!
April 3:
Tonight I am SOooooo glad we paid more to have DVR.
Hubby insisted that it was going to be 80 degrees tomorrow.
I tried to explain that it wouldn't be anywhere near it, only cold and rainy, yet he insisted all the more.
Fast thinking I grabbed the remote, hit the back button until the 5 day forecast showed up.
He pointed and said SEE?!
to which I said "That's an 80% chance of rain".
Hmmph, I showed him! Literally.
Worth every penny to be right! ;-)
It seemed that for a few weeks lewy had taken a break from the havoc it can wreck.
I'm not complaining at all!
To be honest I was a little afraid to mention it for fear the coasting would run into pot holes, or sink holes would open up under us!
Even though the last few weeks had been cognitively decent for Hubby they have also been filled with other emotional struggles. A family members illness and eventual death kept me torn between home for my loved one and away for my loved ones. We are blessed that youngest daughter was willing to stay with her father so I could lend support to others.
This family situation was not one I could keep from Hubby. I was concerned how Hubby would react to this distressing sad news. I was concerned how Hubby would react to my being away so often. I was concerned for our family and the painful journey they would be taking. I couldn't take away their pain, I could only be there for them when it was possible.
I was concerned for youngest daughter taking care of her father. Not because I didn't think she could do it, she just graduated from CNA classes, but because Hubby is very needy.
Or at least that's how he is with me.
I learned that while I was away Hubby became very independent.
Instead of asking youngest daughter to do anything, and she offered many times, he refused most of her assistance and did things on his own.
Things like turning on lights, getting his own beverages, finding snacks, changing the TV channels. Oh, there were the occasions he would mess the TV up and call youngest daughter to help, or needed muscle cream applied to his neck and back and would ask for her help then.
But mostly, he got up, walked around and did for himself.
WHA?!!!!!
Are you kidding me?!
I would have never known this had I not been told because as soon as I walked in the door, it was all "honey, do".
But now that I have this knowledge, what could I do with it?
I tried and eventually failed at getting Hubby to do some things for himself since then. He was good for a day or two and just stopped. Complaints of pain and general feelings of illness took control of Hubby's physical movements. His shaking has increased. Some times he looks like he's on the last step out of a fun house. You know, that moving floor you have to cross?
So that leaves me to wonder, Maybe I am Hubby's problem ;-)
Besides the shaking Hubby has developed another issue. He has started to drool.
Not a lot but enough to make sure he has a tissue close by and reminders to wipe his mouth. He says he isn't aware it's happening.
Hubby also took a HUGE positive fluctuation in memory.
He can recall MANY things that have occurred in the course of our lifetime together. Things I had forgotten my own self until reminded.
Minor things also as well as significant one.
Lewy Body Dementia is such a strange disease.
I wish I could really, really, just enjoy the positives.
I know we should live in the moment, enjoy the day, blah blah blah. Reality can have an ugly side. I keep waiting for the fall. I made a comment to a group the other day "Somewhere between diagnosis and death there is a whole lot of good living to be done. Why does it feel like we always try to skip to the end?"
Maybe I'm protecting my heart from hurting again when Hubby once again loses the memory of our life. I don't know.
Another change in Hubby is his interest in Gospel music. I'm not saying that's a bad thing LOL!! I find it odd because Hubby is a country music guy. In the past I have offered music of various kinds for him. He would always want it turned off. They say music soothes the savage beast. Well Lewy was having NO part of being soothed, until lately.
It just seemed to me that Hubby went against everything I learned about caregiving for someone with dementia. He didn't like routine, he didn't like music, he didn't like activity, he didn't like... insert all things "tried and true" by the professionals. Was I failing because of that? No, I just realized that is Hubby's dementia.
Like the saying, Once you meet one person with dementia, you've met one person. All uniquely different.
I'm keeping to myself these days. I'm staying focused in our world, maybe too much.
For now, we coast with hands off the bars and wind in our face.
Yet ever mindful that the handle bars must be grabbed to steady on.
I feel the front tire wobbling.
Here's some glimpses into our lewy life from FaceBook.
Feb 25 : Yesterday, Hubby wanted to have a talk with me. He motioned that I sit at the end of the bed and we had a very long conversation about. Because he thought it should. He didn't want me to. We did this. So I sat and listened and responded accordingly. And when he felt like we had talked enough, he was content with how it went.
Now you may be wondering what the heck I'm talking about, right? yeah, me too.
BUT apparently it ended well so that's all that matters. :)
March 17: The MOST annoying sound in the world? Candy Wrappers at 3AM!!! Not mentioning any names though >:/
Youngest daughter asks her hubby to bring her ice cream tonight. They asked if Hubby and I wanted any. I politely declined and hubby accepted. Hubby kept asking me if I wanted some and after it arrived continued to still ask me. Several times I declined. A minute or so after receiving his, Hubby shuffled over to me and this time I was very quick to insist that I did not want any, seriously, I was fine and appreciated him wanting to share, but no thank you, in a firm tone. Then he said, I just wanted you to open it for me. Kind of rude that he didn't want to share! ;-) LOL!!!
Now he's feeding the dogs some with a spoon.
March 19:
Hubby and I are getting ready to go into town. He's struggling but I'm helping. Doing simple things like that makes him shake much more and wears him out. He made a comment about his struggle and shaking. I said I believed that doing things like that requires more mental energy from him resulting in the difficulties.
He smiled and asked, "Are you trying to say I'm using my brain too much?"
My answer: "Yes and you're not used to it."
He swatted me! LOL!!!!!!
March 23: Hubby, feeling his oats today, decided to sneak up on, grab and scare me. Not a good thing to do because in fight or flight mode, I fight. I hit him in self defense and nearly knocked him down. oopsie! LOL!! I better check him for black and blue marks later.
March 31: Hubby shares EVERYTHING he gets to eat with the dogs. He will even chase them down with a spoon or fork full of something so they can have a bite and at times he will try to force feed them. Nothing I say seems to deter him. Not even a sick dog :P
Tonight is no exception, he's eating cake and ice cream and sharing. Deciding he needed more because the dogs were eating it all, I finally try to put down my foot about it and it worked, until I walked out of the room and he gave them the last bite. LOL!!
April 3:
Tonight I am SOooooo glad we paid more to have DVR.
Hubby insisted that it was going to be 80 degrees tomorrow.
I tried to explain that it wouldn't be anywhere near it, only cold and rainy, yet he insisted all the more.
Fast thinking I grabbed the remote, hit the back button until the 5 day forecast showed up.
He pointed and said SEE?!
to which I said "That's an 80% chance of rain".
Hmmph, I showed him! Literally.
Worth every penny to be right! ;-)
Saturday, February 23, 2013
Fat Lip, Big Mouth
The other morning
Hubby woke with a fat lip.
It
was quite a surprise because he hadn't fallen out of bed, nor was
there anything that he could have hit in the night. But BAM! There it
was as big as all get out.
Hubby
said he bit it in the night. I thought that he had his Lewy Body
Dementia REM sleep disorder in full swing (pun intended) hitting his
own face during a “fight”.
I
had even thought he might have had a stroke so I had him do the
S.T.A.T. signs for me -
Smile
(looks weird but both sides are moving check),
Talk
to me (jumbled but understandable, check),
Arms
up (check),
Tongue
out (sticking straight out no down angle, I bet he enjoyed doing
that, check) whew no signs of stroke.
Whatever
it was, there was no denying something happened to him.
Perhaps
this was a “payback” for the hateful way he's been treating me as
of late. Not just privately but in the presence of others. And harsh
enough to be scolded by Oldest and Youngest Daughter on 2 separate
occasions. Accusations of theft, personal insults, his insistence of
leaving and moving out on his own, driving, the list goes on and on
so you get the point.
Yes,
I know he can't help it and he can only react to the things his brain
is convincing him of but for the last 4+ years I've been a 24/7
caregiver to Lewy Body Dementia, a year before that a watchful wife/caregiver, a few months
before that a concerned wife, a couple months before that we were
working on repairing a damaged marriage, 17 months before that I was
fighting undeserved divorce proceedings, learning how to live alone
and deepening my relationship with the Lord. A while before that
Hubby had an ongoing affair that shattered our world and the 24 yrs
before that I was a homemaker, mother and wife living with and
buffering for Hubby's PTSD.
So,
separating the man from the disease isn't always easy especially when
I'm feeling emotionally beat down by his harsh and hurtful words.
I've shook it off, walked away, run it out, and yet there are times
that my feelings get hurt and I run my big mouth.
These
deep feelings have kept me away from blogging. The deepest hurt is
his insisting that Hubby wants to leave. He even wanted to look into
placement.
I
feel like I've tried so hard to keep things easy for Hubby, yet he
continues to reject me.
I
wrapped myself in prayer but admittedly I don't even know what I
needed to pray for so I asked for a Spirit of calm to make the
contacts necessary for Hubby.
Eventually
I did receive that calm and leading to make the contacts and this was
actually before the big melt down with my mouth, just needed to throw
that in.
Wouldn't
you know it though, when I told Hubby I had made the contact he
changed his mind about leaving for placement. Imagine that! He is
cognizant enough to understand what it means if he chooses to go into
a Nursing Home. I told a friend I felt like I was on a hamster wheel
because he doesn't want placement but still wants to live by himself.
Squeak! Squeak ! Goes the hamster and the wheel.
Contact about placement was only for information. I wasn't sure what the process was or where or how to even start. The social worker at the VA was new so even she wasn't sure and referred us elsewhere, to another new person, who wasn't sure where we were even located on her map.
Contact about placement was only for information. I wasn't sure what the process was or where or how to even start. The social worker at the VA was new so even she wasn't sure and referred us elsewhere, to another new person, who wasn't sure where we were even located on her map.
To
my surprise none of our 3 local facilities were contracted through
the VA. One never has, one sold so they don't and won't have a
contract and one lost their contract due to issues. The SW didn't say
why. Because I was almost in disbelief of the local facilities I
actually visited the 3 places . She was correct and after walking
into the one that lost their contract, if the greeting I received was
any indication as to why, I could see! I would never want Hubby
there!
The SW did give me the names of 3 facilities they did contract with that were the closest to us. But each one was at the least 45 miles away! She suggested I look on the Medicare.gov site to compare and research the 3 suggested facilities.
The SW did give me the names of 3 facilities they did contract with that were the closest to us. But each one was at the least 45 miles away! She suggested I look on the Medicare.gov site to compare and research the 3 suggested facilities.
The
first and closest one I looked up was an absolute No! No! No! A 2 and
3 star rating out of 5 and complaints on the medicare
website was enough to dismiss that idea without ever seeing the
facility for me. So Hubby has 2 choices if he chooses to go into a
home closest to our location. The other 2 places were higher on the rating scale so if Hubby
decides this is what he wants, we will be taking a trip to each one.
This is breaking my heart apart in small pieces at a time.
I
also had to ask questions that were hard for me to ask. How would it
need to be paid for? Would I lose my home, would I need to find
employment? Would placement nullify the guardianship?
I
was assured that if Hubby chose placement nothing would change except
his location. Being 100% Korean War era Service Connected Veteran
qualified him to Nursing Home Care and if he decided he didn't like
it, he was free to leave and come home. Nothing was permanent. That
eased my mind a little.
It's
been a few days since the melt down. Hubby has been in a nicer mood,
for the most part. He still continues to need my presence even though
her resents it. He won't ask others to do for him, just me. I'm heart
tired and have neglected my own needs but this past week I'm trying
to sort out what those needs are and working on them.
And
to end on a good note, we FINALLY got the Home Health Aide hours
straightened out and are once again receiving 10 hrs a week.
Please continue to pray for us as we walk through this part of the Lewy Body journey.
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!
Saturday, January 5, 2013
Kat in a bag
Somebody dropped a young cat off in Sister in
law's neighborhood.
It found it's way to her home and to
her dogs food and decided to take up residence.
SIL, not being a cat person, needed to
get rid of Cat so she called me, Cat Lady, and I agreed to take the
cat if it could be caught.
A few days later Brother In Law shows
up at the house, bright and early wearing gloves and carrying a
pillow case with,
you guessed it,
Cat inside.
We decided to put the pillow case down
next to the cat food and open it.
Sure enough as soon as that pillow case
was opened, Cat jumped out, straight up a wall, across a window
screen, off the porch and shot across the yard into the woods.
I think the cat was black.
I called and called for it throughout
the day, hoping it would come back or I would see a glimpse of it.
I finally gave up, hoping Cat would come
back to the food once it settled down.
A couple of days later it did. Very
nervous but hey, if your life started out as a drop off then a pillow
case trap and dump, you would be nervous too!
It's been a few weeks since then, it
finally settled in to a box I set up for it and food. It's even
friendly enough that I can pet it and lately it will run up to me for
attention. Every now and then it will try to get inside the house. I
think it likes it's new home and we are all adjusting.
You're saying to yourself, “This has NOTHING to do with caregiving, Kathy!”
Ahhh, but read on my dear friend and
you will see.
Yesterday Hubby had a Mental Health Dr
appointment. The appointment I've been dreading because Hubby had
decided he wanted to talk to Dr about placement.
Over the last few weeks Hubby's desire
to leave has increased. He even decided to stop taking ALL of his
meds. Just like that. So he did.
I can hear some of you gasping, but
think for a moment, what is is REALLY going to do that's worse than
dementia?
I didn't fuss or insist. The inner
struggle to hold on had to loosen it's grip. It is such a very
difficult thing to do.
Some of the meds he takes such as
Depakote relieved his anxiety and anger issues he experienced as a
result of his PTSD. Since stopping I haven't noticed an increase with
those issues any more than what he was already experiencing before
stopping. I know there is nothing physically he can do to anyone or
himself and I can walk away when the hurtful words come.
The Galantamine he was prescribed when
he was diagnosed with his Lewy Body did such a wonderful job at the
beginning that I wanted to kiss the makers. I saw such a positive
change in Hubby's cognition and as time went on, the dosage was
increased to it's max and although I was not seeing any positive's
from continuing that med, I was afraid to have it stopped because I
saw what it did and was worried about where he would be without it.
Apparently it was no longer effective because I have not noticed any
sudden(?)different declines in cognition.
I said in an earlier
post that Hubby and I have had some serious talks and we have
cried separately and together over some of the things he is
experiencing.
Because of these emotional breakdowns I
was able to talk Hubby into taking his antidepressant to help him
feel a little more stable. He agreed. Because of the pain he
experiences in his back and neck he also agreed to take his pain
meds. I said there was no reason for him to suffer with pain.
At the Dr appointment Hubby mentioned
that he felt a little more shaky. Part of his LewyBody symptoms is
shaking. When asked he said he thought more about death and dying and
he had no thoughts about how to make things better. When I was asked
how he was I explained about the meds stopping and how Hubby had been
angry and sad and how he wanted to leave even if it meant placement.
Hubby agreed.
The pillow case was opened,
I think my brain exploded and leaked
out of my eyes so I wont be able to tell exactly what all
conversation was said.
I was asked if I had spoken to the
Social worker. I jumped out of the pillow case, straight up a wall,
across the window screen and porch and off into the woods, just like
Cat. I shook my head, I can't talk to her.
MH Dr was so supportive. He said the
same things I did, Nothing was permanent. If you voluntarily check in
you can check out. Lets just get the info we need to make an informed
decision. There is no right or wrong with these decisions. We are
doing the best we can and it's smart to think ahead.
He said all the things I have said to
myself and in support of others. But I wasn't coming out of the
woods.
We all agreed that it was okay to have
stopped the meds if that is what Hubby wanted but he was keeping them
active in case Hubby changed his mind about them.
Side note: I LOVE my team! Always
having Hubby's best interests at heart.
MH Dr. offered to have the social
worker call us to get the info we would need for placement should we
choose to go through with it.
So, right now, there the food sits on
the porch and I'm waiting in the woods, just like Cat. Afraid to move
and hiding out.
We all think we know exactly what we
will do in any given circumstance but until you are actually faced
with it, we just do not know how we will react. Right now as long as
I don't have to think about it too much all is well. But in those
still quiet moments, or when Hubby is having a moment those feelings
rush in and overtake my heart. I keep reminding myself that my plans
are not God's plans. He has a bigger and better plan for me and for
Hubby. I need to trust Him and follow keeping my eyes on Jesus and
not on the storm. It looks like a pretty big storm brewin. So I'm in
prayer that the Spirit calms my heart and clears my head so I can
walk out of the woods, like Cat.
I know when I do I'll find a warm
box and a bowl of food.
Just not today though.
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