Tuesday, October 25, 2011
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
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
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!!
Tuesday, October 11, 2011
Is this the party to whom I am not speaking?
I think I'm sick.
If I'm not there has to be something wrong with me.
After all, it's JUST a phone call.
A much needed phone call.
So why can't I bring myself to pick up the phone to make the call to the V.A. and inquire about setting up respite?
I'm afraid, but of what?
Respite is VITAL to the well being of a caregiver.
When Hubby was first diagnosed in 2007 the Social Worker had mentioned that the V.A. would provide 2 weeks respite care. At the time trying to process all the information was mind boggling so this info sat on a back burner, so to say.
Here it is 4 yrs later and the thought crosses my mind.
I have read and heard so much about caregiver health statistics like these.
And according to the CDC I'm already in the poor self care bracket.
CDC- Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).
YIKES! I never see a Dr or have checkups for anything.
If I don't look after my own health, physical and mental, how effective can I be as a concerned and compassionate caregiver?
It's just a phone call but every time I think about making it my heart races and my palms get sweaty.
I have all the reasons not to in my head. They all make sense, to me.
They won't care for Hubby like I do.
What if he gets very unhappy because he wont be able to do the things he thinks he can and becomes difficult. Will they medicate him?
What if he gets confused and they mistake his night time wandering as sleeplessness and give him sleeping meds.
Will they let him have his pull ups or make him wear tabbed disposables?
What will he be like when he comes home?
And something hiding in the far back of my mind where scary things fear to look. Even worse,
What if he likes them better than me?
What if he is happy and doesn't ever want to come back to me?
What if he takes a shine to a friendly yet professional caregiver or resident.
he's a charming guy, it could happen.
After all why wouldn't he? He doesn't really know me anymore.
What if I lose him,
again.
I don't know if my heart could stand it.
This is a horrible feeling!
I must be sick.
Please let me be sick.
When I get better, I'll make the call.
If I'm not there has to be something wrong with me.
After all, it's JUST a phone call.
A much needed phone call.
So why can't I bring myself to pick up the phone to make the call to the V.A. and inquire about setting up respite?
I'm afraid, but of what?
Respite is VITAL to the well being of a caregiver.
When Hubby was first diagnosed in 2007 the Social Worker had mentioned that the V.A. would provide 2 weeks respite care. At the time trying to process all the information was mind boggling so this info sat on a back burner, so to say.
Here it is 4 yrs later and the thought crosses my mind.
I have read and heard so much about caregiver health statistics like these.
And according to the CDC I'm already in the poor self care bracket.
CDC- Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).
YIKES! I never see a Dr or have checkups for anything.
If I don't look after my own health, physical and mental, how effective can I be as a concerned and compassionate caregiver?
It's just a phone call but every time I think about making it my heart races and my palms get sweaty.
I have all the reasons not to in my head. They all make sense, to me.
They won't care for Hubby like I do.
What if he gets very unhappy because he wont be able to do the things he thinks he can and becomes difficult. Will they medicate him?
What if he gets confused and they mistake his night time wandering as sleeplessness and give him sleeping meds.
Will they let him have his pull ups or make him wear tabbed disposables?
What will he be like when he comes home?
And something hiding in the far back of my mind where scary things fear to look. Even worse,
What if he likes them better than me?
What if he is happy and doesn't ever want to come back to me?
What if he takes a shine to a friendly yet professional caregiver or resident.
he's a charming guy, it could happen.
After all why wouldn't he? He doesn't really know me anymore.
What if I lose him,
again.
I don't know if my heart could stand it.
This is a horrible feeling!
I must be sick.
Please let me be sick.
When I get better, I'll make the call.
Friday, October 7, 2011
Still kickin
The passing of Hubby's friend must have been extremely difficult for him to deal with.
At least that is how it seems to me after the funeral services.
What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!
The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.
I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.
During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.
Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.
But wait! the party didn't end there.
Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.
Anyway,
I prayed for Hubby to just go to sleep, I prayed for the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.
My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and peaceful.
Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.
It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.
Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.
I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.
Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.
I haven't blogged for what feels like an eternity. I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.
On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)
A few funnies that happened I shall share from my FB status
I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what?
At least that is how it seems to me after the funeral services.
What a terribly difficult day Hubby had the day after.
Hubby had been wound up tighter than an 8 day clock and has done nothing but try to argue with me ALL DAY!!!
The morning started off with the usual dialog of moving away.
I don't do mornings until I have had a least 1 cup of coffee in silence which I did not get.
It all went downhill as the morning wore on. Enough downhill that I threw my patience away and got huffy with Hubby.
Walk away and shake it off wasn't helping much but I really was trying.
I can hear you thinking, "Why didn't you just go to another room and stay there Kathy?"
Well, when I am out of our room, Hubby comes looking for me.
During this time Brother in Law (BIL) left for church and I forgot to give him his offering and lunch money. I knew he would be covered by other 2 sisters so I didn't really worry he would do without. I was however surprised that BIL didn't remind me of it before he left. It's not like him to forget things like that.
Once he returned, Other BIL came inside and I met him at the door with lunch money repayment. We laughed about my goof and Hubby walked into the kitchen and asked if his sister was out in the car. Other BIL said yes and Hubby summonsed her inside. Other BIL promptly informed her and she came in.
Now sometimes, I consider that I'm a smart woman so I left the room, I was pretty sure what was coming and I was not mistaken.
Hubby wanted to know if his sister would explain to him why he had to be "here".
SIL tried to explain that this was his home and he was getting wonderful care, all the things I have said to Hubby and she was met with the same resistance and anger I have been. She took no time at all to jump right into angry mode and yelled at Hubby then stormed out of the house. It wasn't pretty.
Hubby, angry at his sister, decided I was responsible for turning everyone against him.
UGH I can't win for losing.
But wait! the party didn't end there.
Hubby was grumpy the rest of the afternoon and into the evening.
I ignored, I redirected, I tried soft tones and answers, I tried reasoning ( I KNOW I KNOW but I had to try so stop laughing), I went outside and sat on the porch swing for a long time
I walked away so much I could have worn out my shoes.
Come to think of it I may have because I was barefoot.
Anyway,
I prayed for Hubby to just go to sleep, I prayed for the night to end, I begged FB friends for prayers, but I did both of those things AFTER I had my own personal melt down on Hubby that resulted in me allowing myself to get caught up in his constant verbal assaults. Honestly though, after a day of it, it can really make your nerves raw.
I won't go into details but my Spiritual Fruit, which are Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control (Galatians 5:22-23) turned into rotting fruit that got my fruit of the looms in a wad and I verbally threw my stinky fruit at Hubby :(
My inner self was having a primal scream that escaped from my mouth.
I am not pleased with myself and terribly ashamed.
I can't take the words back and even though I may be the only one that remembers what happened, it still hurts that I didn't walk away one more time.
It is what it is though.
My prayers were answered later in the night as Hubby finally settled down and I licked all of my self inflicted wounds.
The rest of the night was quiet and peaceful.
Then the morning came.
Still feeling the effects of beating myself up I made attempts to make nice, but Hubby was still upset.
He even tried to reason with me about why it would be best for him to leave me and move away.
It took a LOT of willpower and a ton of prayers to bite my tongue and keep from responding.
Hubby didn't appreciate that I wouldn't consider his offer to go away, so he dressed, put on his slippers and a hat and grabbed his walker and proceeded to leave me, on foot.
It shouldn't have been comical, but it was.
Doing those things in itself is a change as Hubby has not been able to do many of them, especially use the walker, in a long time.
I never said a word and just let him do what he wanted. I watched as he walked across the room and to the front door. I watched as he walked out the front door and from the windows I watched as he walked to the end of the car.
I was actually impressed he was able to get that far.
It took him a very long time to do it and he rested at the back of the car for a long time. Eventually he started his trek again and just walked around the car to the side deck and sat on the deck swing.
he stayed there a very long time and I ran upstairs to peer down at him and keep an eye on him.
After a while I went to the side door, unlocked and opened it for him.
Calmly I said when he was ready to come inside, this way would be easier for him. I smiled softly.
He eventually came in and we both took a much needed nap.
Outwardly I was gentle but inwardly I am spent.
I feel like I'm walking through a mine field.
My mind never stops so I never feel like I have down time.
I haven't blogged for what feels like an eternity. I can't get my thoughts organized so not doing so feels a little selfish and I don't want to be self absorbed in Lewy's world.
I'm still enjoying my walking/jogging but I did take a few days off to spend with Youngest Daughter and her Baby.
Youngest Daughter even mentioned I may need to make arrangements for some respite time.
She pointed out that as long as I didn't have to have a serious conversation, outwardly I appeared to have all together but she can tell just from seriously talking with me that I need a break.
She is very correct and I will be calling the Veterans Assoc. to see if I can arrange it.
On a lighter note, Hubby and I spent a glorious day with our children and grandchildren.
We had a nice supper and some laughs. It was wonderful. We ALL enjoyed it even Hubby who willingly participated in being part of the group. :)
A few funnies that happened I shall share from my FB status
I was just telling my father...It was BEAUTIFUL weather here yesterday and I did nothing at all!
Nothing inside, nothing outside and you know what?
Saturday, September 24, 2011
Hubby's Personal Loss
On top of all of Lewy's problems that plague Hubby, Hubby has had some personally difficult days.
Hubby and I went to see a friend who was gravely ill in the hosp and after they moved friend to the Hospice wing. Time constraints and other responsibilities prevented us from visiting one more time, then it was too late.
Why do we always think we have one more day?
Hubby has taken the loss of his friend hard.
I'm at a loss to be able to console Hubby because his delusions have kept him angry at me.
Why would he want the comfort of someone that keeps him 'trapped' and 'steals from him'?
So I look at him sympathetically and speak soft and kind words.
It's the best I can do.
The visitation and funeral have been a lot for Hubby to process.
Tonight he is very very confused of day and time.
As I brought Hubby his supper he asked what day is was.
He repeated my "Saturday" response with a questioning tone.
I confirmed he was correct, it is Saturday.
He wanted to know why it was Saturday.
It just is, was the only answer I gave.
When I set his plate down, he couldn't understand why we were eating.
I explained it was time for supper but was having a difficult time getting him to understand what supper was.
Eventually he clicked and ate his supper
It breaks my heart that Hubby feels confused sad and alone.
I am in hopes that he will follow through on the advise of his social worker and attend the Sr Center and participate with others. Our plans to do this have failed twice. The most recent time, Hubby woke, ate breakfast, conversed with me and I gathered his shirts for transport to the cleaners. Hubby likes his shirts starched at the cleaners. He dressed and laid down and wouldn't wake up in time for us to leave.
Oh well, better luck next time.
If at first you don't succeed...
Hubby and I went to see a friend who was gravely ill in the hosp and after they moved friend to the Hospice wing. Time constraints and other responsibilities prevented us from visiting one more time, then it was too late.
Why do we always think we have one more day?
Hubby has taken the loss of his friend hard.
I'm at a loss to be able to console Hubby because his delusions have kept him angry at me.
Why would he want the comfort of someone that keeps him 'trapped' and 'steals from him'?
So I look at him sympathetically and speak soft and kind words.
It's the best I can do.
The visitation and funeral have been a lot for Hubby to process.
Tonight he is very very confused of day and time.
As I brought Hubby his supper he asked what day is was.
He repeated my "Saturday" response with a questioning tone.
I confirmed he was correct, it is Saturday.
He wanted to know why it was Saturday.
It just is, was the only answer I gave.
When I set his plate down, he couldn't understand why we were eating.
I explained it was time for supper but was having a difficult time getting him to understand what supper was.
Eventually he clicked and ate his supper
It breaks my heart that Hubby feels confused sad and alone.
I am in hopes that he will follow through on the advise of his social worker and attend the Sr Center and participate with others. Our plans to do this have failed twice. The most recent time, Hubby woke, ate breakfast, conversed with me and I gathered his shirts for transport to the cleaners. Hubby likes his shirts starched at the cleaners. He dressed and laid down and wouldn't wake up in time for us to leave.
Oh well, better luck next time.
If at first you don't succeed...
Tuesday, September 20, 2011
Thank You Hubby
Listening to the radio in the car with Hubby today made me think back.
Shortly after Hubby and I met, We decided we wanted a different life path for ourselves.
I wanted it for me as well as for him.
Have I always been the most perfect wife?
(insert laugh here) No!
Has he always been the most perfect husband?
No, and if you need details let me know ;-)
But I can honestly say, I don't know where I would be had I not met him.
I know my life is better than the choices I was making and I think I am a better person because of him.
And sometimes in spite of him.
Even with our ups and downs and deep pits he is still the man I love beyond reason.
Shortly after Hubby and I met, We decided we wanted a different life path for ourselves.
I wanted it for me as well as for him.
Have I always been the most perfect wife?
(insert laugh here) No!
Has he always been the most perfect husband?
No, and if you need details let me know ;-)
But I can honestly say, I don't know where I would be had I not met him.
I know my life is better than the choices I was making and I think I am a better person because of him.
And sometimes in spite of him.
Even with our ups and downs and deep pits he is still the man I love beyond reason.
Saturday, September 17, 2011
Wanted, Dead or Alive!
For the last few days sleep has been fleeting during the night for various reasons.
Cool temps, crick in my neck, staying up late, Hubby's busyness, worry that I would not wake on time for something so I watched the clock all night, sleeping with my hand curled up under my chin putting it to sleep and then at some point moving it and it wakes up (I don't know why I started that sleep habit), etc
That makes for long days and nights and leads to mental and physical tiredness.
Oh, I'll eventually catch a nap for "a few mins" and find I've slept like a rock for a few hrs. A couple of times like that and I'll be all caught up.
Last night was no exception but I slept/didn't sleep for a longer stretch of time. Headache tired put me in bed before 9 PM and I finally crawled out at 8 AM. I argued at the clock every time I opened my eyes and looked at it. "I am NOT getting up!" I guess I told it! hmmph!
Dreams were crazy too! I will chalk this up to a 3 hr trip to a funeral. The sheer emotions of everyone and the 3 hr trip back and the car conversations. I dreamed that everyone I encountered had to hug me, no, embrace me. The long, clinging, tight, don't want to let you go, kind. Sometimes the embrace was very sensual.
(Note to self, stop watching so many back to back episodes of "Bones" if you want to keep the men out of your dreams)
I woke while packing backpacks for those going on a trip. I didn't know where they were going but apparently they needed hamburger meat in patty form.
Our son, SonnyBoy, stayed with Hubby so I could attend the funeral. I tried to make it as easy, comfortable and convenient as possible. I made Hubby hamburgers the night before for his lunch (that's where that thought came from).
I made SonnyBoy a time sheet to get BIL on the bus for school.
BIL is Hubby's 63 yr old brother with Downs syndrome. Our annual 4 months of his care began the first of Sept. Hubby's 2 sisters and I share BIL 4 mo of every year. We have done this for several years now. It's funny but I never considered having BIL as caregiving. He is just "one of the kids" and I have always considered it a pleasure to be able to have him. He makes me smile so much and is a treasure.
So SonnyBoy takes over the duties and for the first time in more than 3 yrs, I am a vast distance from Hubby. I just wish the circumstances had been different.
Back at the ranch...
I woke fully from my sleep and looked over at Hubby.
I hear his breathing, not labored and I could see his chest rising and falling in rhythm.
He was sleeping calmly.
I need coffee.
For the last 2 days I have had something rolling around in my head.
The words of another have stirred deep feelings.
I'm NOT jumping on a lynch mob wagon but I do need to get MY feelings out.
By now everyone has heard about the advice Pat Robertson gave.
As a spouse to someone with dementia this is how I (emphasis) feel about this.
From the worlds perspective as opposed to my beliefs and faith I first understood when he basically said, if you were going to find a relationship outside of your marriage then you should get a divorce BUT make sure the ill spouse had a caregiver.
I understood it as much as I understand the thought, If you're going to continue to have an affair (whether your spouse is ill or not) you might as well get a divorce.
I also understood when he said he wasn't going to put a guilt trip on anyone who divorces an ill spouse.
I know it is very hard to be alone and have the same desires and needs, physical and emotional and not be able to fulfill those with your spouse.
Neither am I going to judge anybody for their actions. This is not my place. I don't know how they feel or what they are experiencing. I only know me and my experiences. We are all different with different needs wants and desires. Some people, for whatever reasons, can not be alone.
In his final sentence, I tried every way to re read into what Mr Robertson said. Maybe I misunderstood. Perhaps he meant something else, but there was no further explanation. I can only think Mr Robertson's answer was based on a worldly view. (Again, as opposed to my own beliefs and my faith).
A view that can give us excuses for what we want to do or not do.
But what I do not understand, either from a world view or my own beliefs is how Hubby can be considered dead. I can find no excuses to lead me to accept or believe that Hubby is dead.
I even looked up the medical definition of death here.
I watched and listened to Hubby breathing all on his own this morning.
Lewy Body Dementia can be kill many things I think.
Hubby's mental loss as it continues is like a slow death but he is not dead.
Lewy takes away many of hubby's daily living activities.
We must make adjustments to make what is left of Hubby's life more comfortable, convenient and provide for him the best quality we can. He is still alive.
So alive he ordered breakfast this morning.
Does he remember who I am? No not really, He knows I'm Kathy, he knows we are supposed to be married, he knows I take care of him but he does not remember we got married almost 30 yrs ago.
He does not remember that the things he talks about in our past include me.
He is always surprised when he talks about something and I say, Yes I remember that. He wants to know how I remember it LOL :)
He remembers our children.
He knows I am their mother, but he can't connect us together with them.
He doesn't believe he lives in his own home.
He keeps talking about moving and going to his Mother's home.
It is one of the last places he remembers living at.
He can't walk far, just a few feet, we use the wheelchair quite often.
He sleeps much of the time.
He complains that I am stealing from him and keeping him trapped.
He says me and Kathy and the other one whom he can't remember, are tricking him. (Me myself and I)
Does he always know what he's takling about?
No and neither do I.
He gets anxious and sometimes he cries.
He talks about his death and sometimes I have no idea what to do for him so I hold him for comfort.
All of these things are done by a living and breathing person.
He isn't dead.
The funeral I attended, the man in the coffin, he was dead.
I did not experience the rhythmic breathing from him.
I'm pretty sure of it.
Is dementia easy to live with?
No.
I whine and complain about it too.
Do I have the same relationship with Hubby as I had before?
No.
My partner and I can no longer have the same intimate relationship.
We can't plan for the future like had once did.
I have no sounding board for concerns and there is nobody to turn to for physical or emotional comfort.
I have no pillow talk friend.
My help mate isn't able to do simple things like bringing home a gallon of milk on his way home.
My chauffeur is retired so my back seat driving has turned into actual driving.
My security from car problems is now unavailable.
My scary thing hero can no longer kill the bugs and chase away the opossums.
My protector now needs to be protected even from his own choices and mishaps at times.
I have to think for 2 and react for 2 and care for 2.
All of this and much more has been lost.
I get lonely for my husband.
I miss his physical touch and the fulfilling of our desires for and with each other.
It might feel like someone died sometimes. Grief can creep at every loss.
Yet Hubby is very much alive.
For me, I made a vow, a promise, not just to my spouse, but to myself and to God.
I choose to keep my word.
I don't do it because I have to, I do it because I want to.
Cool temps, crick in my neck, staying up late, Hubby's busyness, worry that I would not wake on time for something so I watched the clock all night, sleeping with my hand curled up under my chin putting it to sleep and then at some point moving it and it wakes up (I don't know why I started that sleep habit), etc
That makes for long days and nights and leads to mental and physical tiredness.
Oh, I'll eventually catch a nap for "a few mins" and find I've slept like a rock for a few hrs. A couple of times like that and I'll be all caught up.
Last night was no exception but I slept/didn't sleep for a longer stretch of time. Headache tired put me in bed before 9 PM and I finally crawled out at 8 AM. I argued at the clock every time I opened my eyes and looked at it. "I am NOT getting up!" I guess I told it! hmmph!
Dreams were crazy too! I will chalk this up to a 3 hr trip to a funeral. The sheer emotions of everyone and the 3 hr trip back and the car conversations. I dreamed that everyone I encountered had to hug me, no, embrace me. The long, clinging, tight, don't want to let you go, kind. Sometimes the embrace was very sensual.
(Note to self, stop watching so many back to back episodes of "Bones" if you want to keep the men out of your dreams)
I woke while packing backpacks for those going on a trip. I didn't know where they were going but apparently they needed hamburger meat in patty form.
Our son, SonnyBoy, stayed with Hubby so I could attend the funeral. I tried to make it as easy, comfortable and convenient as possible. I made Hubby hamburgers the night before for his lunch (that's where that thought came from).
I made SonnyBoy a time sheet to get BIL on the bus for school.
BIL is Hubby's 63 yr old brother with Downs syndrome. Our annual 4 months of his care began the first of Sept. Hubby's 2 sisters and I share BIL 4 mo of every year. We have done this for several years now. It's funny but I never considered having BIL as caregiving. He is just "one of the kids" and I have always considered it a pleasure to be able to have him. He makes me smile so much and is a treasure.
So SonnyBoy takes over the duties and for the first time in more than 3 yrs, I am a vast distance from Hubby. I just wish the circumstances had been different.
Back at the ranch...
I woke fully from my sleep and looked over at Hubby.
I hear his breathing, not labored and I could see his chest rising and falling in rhythm.
He was sleeping calmly.
I need coffee.
For the last 2 days I have had something rolling around in my head.
The words of another have stirred deep feelings.
I'm NOT jumping on a lynch mob wagon but I do need to get MY feelings out.
By now everyone has heard about the advice Pat Robertson gave.
Mr. Robertson was asked what advice a man should give to a friend who began seeing another woman after his wife started suffering from the incurable neurological disorder.
"I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her," Mr.Robertson said.
"I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her," Mr.Robertson said.
He also stated he wouldn't "put a guilt trip" on anyone who divorces a spouse who suffers from the illness, but added, "Get some ethicist besides me to give you the answer."
When asked by Terry Meeuwsen, Mr. Robertson's co-host, about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."
The answer Mr. Robinson gave was :
"If you respect that vow, you say `til death do us part, but this is a kind of death."
As a spouse to someone with dementia this is how I (emphasis) feel about this.
From the worlds perspective as opposed to my beliefs and faith I first understood when he basically said, if you were going to find a relationship outside of your marriage then you should get a divorce BUT make sure the ill spouse had a caregiver.
I understood it as much as I understand the thought, If you're going to continue to have an affair (whether your spouse is ill or not) you might as well get a divorce.
I also understood when he said he wasn't going to put a guilt trip on anyone who divorces an ill spouse.
I know it is very hard to be alone and have the same desires and needs, physical and emotional and not be able to fulfill those with your spouse.
Neither am I going to judge anybody for their actions. This is not my place. I don't know how they feel or what they are experiencing. I only know me and my experiences. We are all different with different needs wants and desires. Some people, for whatever reasons, can not be alone.
In his final sentence, I tried every way to re read into what Mr Robertson said. Maybe I misunderstood. Perhaps he meant something else, but there was no further explanation. I can only think Mr Robertson's answer was based on a worldly view. (Again, as opposed to my own beliefs and my faith).
A view that can give us excuses for what we want to do or not do.
But what I do not understand, either from a world view or my own beliefs is how Hubby can be considered dead. I can find no excuses to lead me to accept or believe that Hubby is dead.
I even looked up the medical definition of death here.
I watched and listened to Hubby breathing all on his own this morning.
Lewy Body Dementia can be kill many things I think.
Hubby's mental loss as it continues is like a slow death but he is not dead.
Lewy takes away many of hubby's daily living activities.
We must make adjustments to make what is left of Hubby's life more comfortable, convenient and provide for him the best quality we can. He is still alive.
So alive he ordered breakfast this morning.
Does he remember who I am? No not really, He knows I'm Kathy, he knows we are supposed to be married, he knows I take care of him but he does not remember we got married almost 30 yrs ago.
He does not remember that the things he talks about in our past include me.
He is always surprised when he talks about something and I say, Yes I remember that. He wants to know how I remember it LOL :)
He remembers our children.
He knows I am their mother, but he can't connect us together with them.
He doesn't believe he lives in his own home.
He keeps talking about moving and going to his Mother's home.
It is one of the last places he remembers living at.
He can't walk far, just a few feet, we use the wheelchair quite often.
He sleeps much of the time.
He complains that I am stealing from him and keeping him trapped.
He says me and Kathy and the other one whom he can't remember, are tricking him. (Me myself and I)
Does he always know what he's takling about?
No and neither do I.
He gets anxious and sometimes he cries.
He talks about his death and sometimes I have no idea what to do for him so I hold him for comfort.
All of these things are done by a living and breathing person.
He isn't dead.
The funeral I attended, the man in the coffin, he was dead.
I did not experience the rhythmic breathing from him.
I'm pretty sure of it.
Is dementia easy to live with?
No.
I whine and complain about it too.
Do I have the same relationship with Hubby as I had before?
No.
My partner and I can no longer have the same intimate relationship.
We can't plan for the future like had once did.
I have no sounding board for concerns and there is nobody to turn to for physical or emotional comfort.
I have no pillow talk friend.
My help mate isn't able to do simple things like bringing home a gallon of milk on his way home.
My chauffeur is retired so my back seat driving has turned into actual driving.
My security from car problems is now unavailable.
My scary thing hero can no longer kill the bugs and chase away the opossums.
My protector now needs to be protected even from his own choices and mishaps at times.
I have to think for 2 and react for 2 and care for 2.
All of this and much more has been lost.
I get lonely for my husband.
I miss his physical touch and the fulfilling of our desires for and with each other.
It might feel like someone died sometimes. Grief can creep at every loss.
Yet Hubby is very much alive.
For me, I made a vow, a promise, not just to my spouse, but to myself and to God.
I choose to keep my word.
I don't do it because I have to, I do it because I want to.
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