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

Our dog, Lady, is hard of hearing. She is laying at the foot of the bed and Hubby is trying to get her attention by talking to her. He finally says to her, "You aint paying any attention to me." I say, "She can't hear you" 
He says "What?" 
I repeat, he says "What?" Through laughter I say it one more time. 
Huobby says "Oh, she's like me, huh?" LOL!!

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? 
I don't feel bad about either choice :D

Things have been so pretty good the last 2 days I think I need a Towne Crier, 2 O'CLOCK AND ALL IS WELL!!!
  
Indulged in too much sugar and shortening last night woke up at 4 with indigestion. :( 
Got out of bed at 4:20 
poured coffee at 4:30 
Hubby got up asking for a cup at 4:35 then decided to "start the day" and say "Huh?" to every thing I answered him.
His last statement was "My clothes are about gone out of there (closet)" 
My response, "Yes I need to get them to the cleaners" 
He asks, "You need to get what to the cleaners?" 
I stare at him thinking, seriously?! 
So I say "I need to get your coffee to the cleaners"
He hasn't said a word to me since. 
5:30 AM, It's gonna be an interesting day. :/
(One comment asked me what I was eating. I said other people call it cake with icing LOL)

And finally
 
It had been a rather peaceful morning and then Hubby decided he was cold so he puts on a housecoat, looks at me and says "I don't know how I'll make out in this cold weather, I don't have the meat on my bones that you do." 
Seriously Hubby?!?! I love you too!! LOL!!! 


See it's not all bad :)

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...

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.

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.

          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.

          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.

Lewy's Anxiety or Mine?

I sometimes wonder if the additional anxiety belongs to Hubby or if it's mine.
Mine, because I'm anxious to lessen Hubby's and have thus far been unable to do.

I've sought out advice and council from the experts (Drs) and the experienced from the trenches (other caregivers)
I meet Lewy head on at times with his bullheadedness and uncooperative attitude and mine with my continuous prompting (could also be construed as nagging).
Some how I need to find a solution. I'm thinking along the lines of less nagging.

My preferred "go to" site for Lewy Body support and advice is the Yahoo spouse group
I am NOT saying that any experience or advice that other (non spousal) caregivers can offer isn't appreciated or valued. it IS!  I just know that caring for a spouse is different compared to caring for a parent, grandparent, other family member or friend.

But, I'm grasping now for a place to turn to make it better for Hubby and in the end result me.
This is the question I posed to others.

"Would a social worker or counselor be of benefit?
I'm afraid of new meds and their side effects but is there something others have
found beneficial I can ask about? I worry he will be fast forwarded with meds
but what am I actually holding him back in?
Do I just let the change occur and roll with the punches?

I'm really conflicted and feel like I'm in a circular room with a revolving
floor and lots of doors. No corners to hide in and no way out but through one
that isn't locked. Yet I keep trying the locked door :( "

In one answer I was asked if the Dr knew about these changes and if meds had been introduced.
My answer is...
Seroquel is not a med that Hubby takes and yes, his Dr has been notified of his
behavior changes. This behavior is also not the result in any med changes.
Illness is also not a factor ie: Fever (always first thought), UTI...etc
Just seems to be a natural (that seems like an odd choice of word) part of the
progression.

I've prayed but honestly I'm not sure what I need to pray for.
I'm open for thoughts, feelings, suggestions, magic spells (kidding!)

I'm a firm believer that love concurs all, in this case I think it needs some backup.
I don't care for this, helpless to do anything, feeling.

FB status rewind for my own pleasure

Things that make you go hmm,
Things that make you smile,
Things that make you go LOL!!

We live a simple and easy life

Tues. Aug 23: Hubby has complained about not being able to see well for a very long time. Since the V.A. is too slow for him and I needed an exam myself, we both went and had exams with a local Eye Dr. 
After his exam Dr told him his eyesight wasn't much if any different than his current prescription. but his glasses could use adjusting. So, we had the old ones adjusted and cleaned. 
Later he told me he could see great with his new glasses. He is very pleased. YAY!! ;-)

Fri. Aug 26: This shouldn't be funny but hey, it's me. I let our dog, Lady, in the house to see if it would help alleviate some of Hubby's anxiety. It's a work in progress. 
She's been getting royal treatment! Tonight while she and Hubby were laying on the bed, I walked out of the room into the kitchen. I heard Hubby say, "Where did she go Lady? Where did Kathy go? Or whatever her name is." LOL!!

Sat Aug. 27: Waking up in a new world is always difficult, especially for Hubby. Lets pray we can make the visit short yet sweet until we find our (his) way home to the familiar. 
We always did want to travel. I just thought we would actually leave the house ♥

 Sat Sept 3: HA HA!! Hubby's REM sleep disorder causes him to act out dreams. There's nothing like a 2 AM beat up and incoherent yelling from Hubby. 
Used my defensive pillow block move so no injuries, just a rude awakening. Then he grabbed my night dress and blanket resulting in a tug of war! Of course I was victorious and even had to laugh (yes I was surprised at that too). Hubby slept right through the entire thing.

and again
 
Oopsie, body spray is not hair spray. But Hubby sure smells purty ;-)

(Hubby did it to himself. He smelled like sweetpea )


Sun Sept 4: Hubby: You know what? I've been thinkin. I've been thinking about it since it came to me. Well since you said something but I've been thinking about it for a while now. I sure have been thinking about that. (long silence) You know what I mean?
Me: Umm, no, I have no idea what you are talking about.
Hubby: Now Hun, you can't tell me you're that stupid.  
Me: (silent thought) Apparently I am!

That comment made me bust out laughing! 

If you don’t enjoy life on purpose, then you probably won’t enjoy it at all. - Happily Copied from Joyce Meyer Ministries

Lewy's Bicycle Escape Dream

It's been an interesting few days at Lewy's House.
In particular,
If you remember Lewy decided he needed a bicycle. One was purchased for him but he was unable to ride it.
Then he started talking about an adult trike.
I delayed him as long as I could until a trip to a local bike shop was made Friday.

My anxiety always raises it's red flags any time we have to travel from home.
Knowing Lewy has been planning his escape for some time now left me feeling anxious.
First he thought he would get a 2 wheeled bike for his get away.
But that was a no go.
The best he could do was push it across the driveway a couple of times.

Awaiting the trip to the bike store was fueling his eagerness. Lewy had been up for a couple days in a row. Talking about going and getting his new bike. Riding it back to town. (Not home, as he was going to stay in town a 15+ mile trip back. Home is farther)
I suggested when we get there he give it a test run just to make sure he was able to ride it.
Lewy agreed. As it happened that his aide was here for her time, he was annoyed he had to wait.
I, on the other hand could have happily waited until the end of forever.

As soon as we pulled in to the parking lot another customer was taking a "test  spin" on a bike identical to the one Lewy was interested in. She appeared to be a little older and had some physical problem. Lewy watched as she made the parking lot circle with the assistance of the salesman.
We entered the showroom and were greeted by another gentleman.
Lewy was looking at a row of adult trikes and told the man he wanted to try one.
I told Bike Gentleman what Lewy wanted and I also mentioned that Hubby had Lewy Body Dementia. I asked if he would please take that into consideration when dealing with Hubby.
Bike Gentleman was so kind, he smiled and told me he completely understood and that he had his own experience dealing with people with dementia.
Bike Gentleman made me feel at ease.
I explained that Lewy may be trying to plan an escape.
Bike Gentleman and I laughed.

He offered Lewy a test ride in the parking lot.
Lewy mounted trike and Bike Gentleman pulled him outside.
It was apparent that Lewy would not be able to understand the mechanics of peddling and steering.
Balance was still off making turns difficult and Lewy's inability to push the pedal and continue momentum was almost non existent. All in all it was a very disappointing reality for Lewy and as much as I rejoiced that he failed, My heart hurt for Hubby.

Not willing to admit his inability we all entered the showroom for a cooler place.
I could tell Hubby was very disappointed but he never said so
Bike Gentleman asked Hubby what he thought.
Hubby said he thought he needed to sleep on the decision.
Bike Gentleman told Hubby to take all the time he needed.
I then thanked Bike Gentleman and said we would do just that.

Hubby started experiencing mobile melt down when he made a walk to the restroom.
It gradually increased. 
Bike Gentleman offer Hubby a chair and a bottle of water.
He was so kind and considerate and patient.
Hubby stayed in the showroom for over an hour.
Then we left.

Hubby was quiet the ride home and most of the evening.
He later informed me that the small 'ride' through the parking lot was too difficult and he didn't believe he would be able to ride the bike.
I agreed with him and there has been no more word on the subject since.

Maybe now Lewy will leave Hubby alone.