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.

Saturday, June 23, 2012


I don't feel depressed. I don't have brain fog. I don't cry all the time. I still feel joy in my soul. I laugh, I genuinely smile, I exercise, I eat properly (most of the time) I drink my water. I'm just tired. I'm not exactly sure when I started feeling so tired but I do, and tired enough that I feel like it's interfering with my life, so I made an appointment to see a Dr for a general check up. They told me I had to be re established because it's been more than 5 yrs (YIKES) since I've been to a Dr and I would be considered as a new patient. I was able to work the appointment  time to fall into the aide time Hubby gets, and our aide has a heads up I may be squealing tires as I come back down the driveway. Let's hope it all goes without a hitch and I'm not forced to bolt from the Dr office mid exam to get home in time. I'm in hopes it's nothing more than a little low on iron or something else as simple. I like to be optimistic.

Speaking of Drs, Hubby had an appointment with his Mental Health Physician the other day.
I allotted the proper amount of preparation time and we made it, YAY!
The appointment was routine and we (I) talked about how Hubby is experiencing more anger issues, Hubby agreed. Dr talked with Hubby about this and made a few suggestions for him one was a slight increase in Hubby's antidepressant, a suggestion I agreed with and the other,
maybe I misunderstood, maybe I took it personally.

MHP addressed Hubby's anger and asked why Hubby felt like that.
Hubby tried really hard to say something but never really got a sentence out completely so I offered that I felt like Hubby was angry at his situation.
(Heck, if I were Hubby, I would be angry at my situation too.)
Hubby agreed with my assessment.
I offered that Hubby feels like he cant do anything.
Hubby agreed.
MHP asked Hubby what type of things would Hubby like to do.
Hubby said he wanted to do stuff.
MHP said he thought that Hubby wanting to do stuff was a good idea. I agreed it was BUT Hubby's idea of doing things was that he wanted to do them alone. Like going to town on his own. Hubby agreed with me and included that I wouldn't let him do anything.
Now this is where I may have misunderstood.
MHP suggested that maybe we, WE as in you and your wife, could come to a compromise. Yes there were places Hubby might need to reconsider going and things he would have a difficult time doing but with a compromise and the support of family and friends he saw no reason Hubby couldn't do some things.
I think my brain matter started to ooze a little.
MHP doesn't know that almost everyone has slipped off the face of the earth for Hubby.
MHP doesn't know that I sit at the ready to take Hubby anyplace he chooses when he chooses.
MHP doesn't know that I drop everything to get ready at Hubby's whim and then wait for hrs to learn that Hubby has changed his mind, forgotten or doesn't feel like going and doing what he requested.
MHP doesn't know how many suggestions I have made to Hubby to try different things. Things like Day Centers and Sr Centers, I even tried to hire a companion for Hubby but Hubby refused the service.
MHP doesn't know that Hubby's aide and I are just about the only constants in his life.
MHP doesn't know that Hubby sees MHP more often than he sees some family members.
MHP doesn't know how much compromising I have tried to do.

I wiped the brain matter from my eyes as I filled MHP in, now he knows.

I also said that Hubby has talked A LOT about leaving me, going to town, living alone.
MHP asked Hubby if he wanted to go to town and live.
Hubby said "No"

I think my brain exploded with that silent screaming but thank goodness for my skull keeping it contained and no leaking out because the pieces were so big that it blocked the ducts in my eyes.

I think the look on my face was enough for MHP.

We concluded our visit and Hubby and I decided to meet oldest daughter for lunch.
Lunch was nice but as the time wore on it became more than apparent that Hubby was exhausted. He chose not to finish and didn't want a take home box. I took him home and settled him down where he stayed the rest of the day and evening.

It was a very great effort for Hubby to get up and get anywhere at a certain time. My constant but gentle (I promise gentle) pressure to get dressed and shaved and accessorized leave him feeling exhausted and adds confusion. To Hubby, my directions for what we need to do as I assisted dressing him must seem like lightning speed to his ever slowing brain function even though we had a 2 1/2 hr window for Hubby to get ready and it too the entire time. I scrolled though the accessory list, here are your, watch, rings, glasses...
I double checked he was buttoned, zipped and straightened. After locking up the dogs and on the way out the door I ran through the mental list of things I needed and away we went.
As we drove down the road I glanced over at Hubby and noticed the sun shining on his wedding ring. I wasn't wearing my wedding ring but I wasn't upset because I hardly wear it anymore.
I thought about my ring, I thought about how easy it seemed to not wear it.
I remembered how hard it was to accept the fact that before Hubby's diagnosis I thought my marriage was over and after he left me I couldn't not wear it. My heart was still married, so for months and at the shaking of the heads of friends I continued to wear my ring. Then one day I changed hands for it, and after a year of separation and attempting to come to terms with the finality of my marriage, with the help of a counselor, I put my ring in a drawer. I never expected to wear it again.
When Hubby and I reconciled I was delighted to once again wear my ring.
As I did more and more physical labor around the home, like building and remodeling, I feared I would damage it so I wore it only when we went somewhere.
As Hubby's Lewy Body progressed and his recognition of me as his wife left him, Hubby became accusatory of my possession of the ring. He believes I stole the ring from him. On more than one occasion he has said that the ring does not belong to me so to avoid a conflict, a heated one like we have had before, I leave it in the drawer so he isn't reminded when he sees it. It's sad that not wearing it isn't more upsetting to me.

And then there is today. Hubby called for me. Lately he has seemed extra needy and clingy. Always wondering where I am and what I'm doing. As I always do I went to his side. He started and stopped his words several times then eventually said, "I don't think I should call you Hun." I asked why he felt like that and his answer was "It's not right, but I don't know what to call you." ; Please remember that our conversations are not fluid so it takes time for Hubby to get through a sentence. Even when the sentences are mine, I must chop them up in small pieces waiting for him to acknowledge that he understands what I have said. , So, I told him he could call me Kathy, that was my name and he could do that. He agreed he could do that. I walked out knowing he was satisfied with the answer but feeling like another piece of me had been lost. Odd thing though, he's called me Hun all day. Go figure.
Man I'm tired.

Sunday, June 3, 2012

Just Another Day

"Coming" I say as I go to Hubby's side.

"I want to"
I wait. I sit on the edge of the bed.
"You want to, what?"
I repeat, "You want to what?"
"Oh I don't know what I was gonna say. The birds are starving."
I see that they have eaten the daily portion of seed already and it's only 3 or so in the afternoon.
"What time do we eat?"
"Are you hungry? I'll make an early supper"
Old Peoples Supper my children and I affectionately call it. Hey, don't knock it, I have noticed that during certain hours at certain establishments, the bill is reduced for Srs. We just never eat there :/
"No, I want to talk to you."
"Now Hun, this is nothing against you but I'm going to leave and move into town."
I say ok, just like that without making a fuss.
Then I excuse myself to the shower because I had been removing and regrouting a floor and was dusty and dirty.

Just another day in our Lewy Body life.
Incomplete sentences, plans to leave, scattered and forgotten thoughts.

I emerge from the shower, hang out on FB for a while when I hear,
"Hey Hun"
"I'm coming" As I go to Hubby's side.
He asks if I'm going to do anything else to my still damp hair.
I say No, I was just going to let it air dry.
He looks bewildered.
I ask. "What's the matter?"
Apparently he thinks we made plans to go out and eat.
Now I'm confused.
Didn't he just say he was leaving me?
I agree that I can get ready and we can go out.
Hubby seems pleased and we enjoy an evening out.

Just another day in our Lewy Body life.
We roll with the changes, adjust our attitude, stop on a dime and make sharp corners quite quickly yet maintaining some semblance of upright.

Dinner was nice, the ride home was quiet.
I can tell Hubby is slipping into that place that dementia goes towards the evening.
He sleeps in the car.
As we pull into the driveway, one of our cats was refusing to surrender it's spot in the middle of the drive.
I set the car in park and get out to retrieve the cat and move it.
Hubby decides to get out too.
"Where are you going?!" I ask in a concerned tone.
"To the house."
"Well just get back in the car and I'll pull up, get the chair (wheelchair in the trunk) and help you."
I get into the car and I THOUGHT Hubby was turning around to sit down but instead, takes a step sideways, closes the door behind him, tries to make a turn and I watch in fear as he goes down.
I jump from the car and run to him. He is clutching his head, I feel a knot but no open abrasions.
I survey him for injuries and limb movements.
I remember that I was told I should take him to the Dr if he bumped his head.
I grab the chair from the trunk, pull it directly behind his back after I have him balanced in a sitting position and after a few attempts ("Honey, I NEED you to cooperate with me!" I think I was grumpy when I said this) I get him up and in the chair.

Just another day in our Lewy Body life.
We can go from good to bad in the blink of an eye. Helplessly watching attempts to be independent can go terribly wrong and accidents can happen. Adrenaline levels can skyrocket faster than the spaceshuttle can take off.

I suggest we take Hubby to get checked out for his bump.
Hubby refuses!
I inform him It was suggested by the Dr's nurse that he needed to be checked out.
I make an attempt to push him towards the car, still running by the way, so I can TAKE him to the Dr.
Hubby gets VERY adamant and refuses, so much that he has dug his heels into the blacktop and I think I wore the bottom of his shoes off by trying to push him.
My frustration level rises.
Hubby's frustration level rises.
This is going nowhere fast so I say "FINE!"
I turn the chair towards the house, wheel him inside and leave him in the bedroom.
I return to the car, park it and retreat to lick my wounds in another part of the house.
From Hubby's monitor I can see that he has gotten into his bed, perhaps he is emotionally wounded too.

Just another day in our Lewy Body life.
Second guessing actions and responses. Trying to sort out hurt feelings and obstinate behaviors.
Reminding myself that this is Hubby's life and these are his decisions even when I know I can make them mine.

After becoming engrossed in a Wii game for too long (and nearly throwing out my arm in the process. Hey, if you think it's that easy to chop down a virtual tree faster than a computer generated opponent, you just go ahead and try it. Yeah, that's what I thought. ) I decided to check on Hubby and take a bathroom break. I passed through the bedroom where Hubby was, he smiled and asked where I was going. I answered in that cold robotic way (you know which way I'm talking about). On the way out of the bathroom I pass back through the bedroom. Hubby asks me if I'm upset about something because I sure do look grouchy.
I admit that I was worried about him and I got upset at his refusal to see a Dr.
I admit I find it difficult to switch emotional gears so suddenly.
Hubby asks if I want to get rid of him.
I answer "No" I'm not even thinking that.
I admit that I still love him, I just don't like what his disease is doing to him, and sometimes, I have a hard time keeping it separated from him.Tears fall. They seem to be mine.
Hubby says "oh"
Hubby smiles, I smile back. 

Just another day in our Lewy Body Life.
Temporary withdrawal from reality. Tears fall. Insecurities and assurances. But in the end, always love.

Tomorrow is another day.

Tuesday, May 22, 2012

Falls Specialist

Fortunately for me the Falls Specialist that the VA set up a consult with only called me on the phone and didn't need to make a home visit!
I tidied up a few things up anyway, just to get a head start. Better safe than sorry.

I had no idea there was such a person as a Falls Specialist and I told her so.
FS said that she worked mainly with nursing homes for the patients safety.
I let her know that I appreciated her input on an individual basis and that there were many more at home caregivers that could benefit from her knowledge.
So first things first.

FS gave me a run down of the things that she would normally recommend or order for a nursing home patient that was a fall risk. Everything from hip protectors to bed alarms.
She gave me a site to go and look at products, posey.com

After looking at her suggestions I decided on items that I felt would be the most beneficial for Hubby while still maintaining his dignity and independence.
For hip protector I chose something that resembled sweat shorts. They will be easy on and off for Hubby as opposed to the undergarment type of protectors.
Another item she wasn't sure if she could get approved but was going to try, was a floor alarm.
She said it wasn't requested as bed alarms were the norm and she knew I could get one of those. I asked her to try anyway. I wanted a floor alarm/alert because rolling around in my  mind was the memory of Hubby's stay in the hospital while they were testing for hydrocephalus. Because he has dementia and was a fall risk, they placed an alarm on his bed that went off when he tried to get up and go to the bathroom. After it went off the first time, he feared getting up and setting off the alarm again so he didn't move all night and  lets just say when I arrived the next morning there was an upset Hubby lying flat on his back with a job for a nurse to take care of. I don't want him to have that trapped feeling again.
Maybe with the floor alarm he will feel differently about the alert and not worry he can't move around in his bed. We will see.
Since the Veterans Assoc. is supplying these items, I have no idea how much something like this costs.
I am very grateful to be able to receive the assistance. The VA may be slow and FS told me it would take at least a week to get the request approved and then how ever long afterward to get the order in, but when they come through, they come through.

After Hubby's latest fall I wondered if he would even be able to walk on his own again.
He took a nose dive in mobility and required complete assistance with rising, transferring, even sitting and staying upright. But a week later, as of last night, he is more his own self (whatever that really is) and today getting around with no additional help besides the grab bars placed in the rooms or easily accessible furniture for clutching.

Last night, while I slept he raided the fridge, long time since he's done that. And this morning my FB status was...
Dear (Daddy), Thank you for getting up in the night to raid the refrigerator and spill cheese all over the floor. It was a lovely surprise to find first thing this morning. Much love, from Lady and Booger ♥ Oh and we didn't care for the salsa so we let Mama clean that up. We're sure she appreciates you too :)

Tuesday, May 15, 2012


Documenting Lewy was a suggestion I was given when the Lewy Body journey started and after I joined a spousal caregiving support group for those living and caring for Lewy Body.
I learned so much from those that went before us.
Journaling was a way to not only document Lewy and be able to present a thorough report to the Dr, it became a way for me to document my feelings. Something to look back on and see what we did that worked and what didn't work to make Hubby's life more manageable for him and for me.
I also hope that in choosing to journal (blog) publicly I am helping others to better understand Lewy and helping those that find themselves face to face with a diagnosis of Lewy Body Dementia I am offering a bit of support so the journey doesn't feel so lonely. I remember that scared and alone feeling.

With each down turn I still get that scared feeling. I just don't feel alone anymore.
I know there are those before, those waking with and those coming after.
The emotional support system I fell into by blogging keeps my heart on track.
I am blessed beyond measure by you all.

So the most recent downturns Hubby is experiencing has it's fears.
Hubby took another fall last night.
It was pretty hard on his back and not his head this time.
The jolt itself was enough to send Hubby into the same reaction of shaking once I was able to get him up from the floor and into bed.
As before I didn't know what to do and since my holding him seemed to help calm him the last time, I did it again. I held him close and tight and stroked his brow and head until he settled down and the lines in his forehead smoothed out quite a bit.
I always feel so inadequate in doing that. My head says I need to be doing some type of medical/professional/ textbook  something or another to care for the shaking, but my heart just keeps saying, hold him. So I follow my heart leaving my head to scream inadequate.

Hubby doesn't help matters either by refusing, REFUSING, medical attention.
Today though, Hubby has needed lift assist all day today. He has been unable to rise from his bed or walk so we have put a few house miles on the wheelchair today. Because of this I called Primary Care Dr, even though Hubby didn't want me to, and spoke with PCNurse (We like her) She was very understanding of our situation.
I had informed her that I have documented a fall of some type at least once a week for the past 2 months!
I also told her I didn't think calling every time Hubby went down was necessary because , most of the time he has no serious injury, a few rub burns and a scratch or two and Hubby's refusal to have anything seen to prevented me from calling, also, I didn't want to become worrisome to them about every bump and bruise.
PCNurse understood my dilemma, was happy to make note of my recordings and together we decided that a consult to a Falls Specialist was in order.
Falls Specialist will make an evaluation of our needs either by phone or a home visit and order the necessary supplies for Hubby. (Note to self, clean house) 

I realize this post is across the board ordinary in content and for those that have followed my ramblings know I have a quirky sense of humor so I wanted to share a few FB status smiles with you as a post script.

May 1)  A fly keeps annoying Hubby so he asked me to kill it for him. While retrieving the flyswatter it crossed my mind, Hubby with a serious startle response + Kathy with a flyswatter, this may not end well, for Hubby. :/

 So I'm talking to Booger (the dog) when I notice something odd on his head and ear. Then I realize, he has cheese dip in his fur! So, either he's been sitting under Hubby at supper OR Hubby has been trying to spoon feed him again and missed! Tried to get a pic but it wouldn't show up. Fun Times!! LOL!!!
May 3) Hubby was sleeping and dreaming, loudly. I walked in to listen to him give directions on car repair and converse with a friend then laugh. Something must have gone wrong because he got angry so I left him to his dreams to work it out. When he woke, I heard him call "HEY!" I went to him, and I know I shouldn't have laughed because he was as annoyed as all get out but he said "Just where the H*** am I!" We eventually got it all straightened out :) LOL!
May 7)  Award winning comment of the day!!
Hubby was watching TV and I was in the room folding clothes, he looks over at me and says "Hey Hun?"
I answer, "Yes?"
He says "I sure do love you"
♥ That my friends deserved a hug and a kiss!! ♥

May 11)  Lawn Mower decided to stop moving :(
So, disgusted, I left it at the back of the house. Shared the annoyance with Hubby who later suggested WE should go get it and bring it to the front of the house (It's normal parking spot).
We laughed about the word "we".
He shuffled into the bedroom and I decided to just go out and push it to the front. Mission accomplished and inside I came.
I've been sitting here on FB for a little bit when he shuffles back in here and asks me if I was ready to go get the mower. I said I already did, and he responded, "Well I just got my shoes on".
Then I noticed, he had put on a pair of jeans and his shoes to help me! LOL!! Thanks honey!!

Friday, May 4, 2012

Are We There Yet?

According to the V.A. we aren't.

Hubby had an appointment for Palliative/Hospice care the other day.
I allowed 2 hrs for Hubby to get up, have coffee, eat and me get him prepared for his appointment.
This time frame is usually a good one although there are times we cut it close.
This particular day it took the entire 2 hrs just to get Hubby out of bed.
It wasn't because he didn't want to go, it was because Hubby has NO concept of time.
No matter how much I prodded him he just didn't go. When he finally did, our window closed and locked, so I had to cancel.
At this point, knowing the importance of this appointment I was very frustrated but over and over I had to remind myself that Hubby has no control over his time concept.
When I told Hubby we had to cancel he didn't understand why.
I tried explaining we had an appointment but the word appointment was lost on Hubby and he couldn't understand why we couldn't just go and get one while we were there.
I suggested Hubby might appreciate the the time to get a little more sleep, he did.

I called and cancelled and was told someone would call me back and we would see what we could do on the phone.
Nobody called that day.
Wed while my aide was here, someone called and I missed it, they said they would call back.
Thursday, nobody called.
This morning my aide is coming again and I will need to make the weekend run for milk and such. I fretted someone would call while I was gone so I called instead.

ACCORDING TO THE V.A. guidelines for Hospice for dementia are pretty strict.
After a long search, I found this Functional Assessment Scale (FAST) used in determining eligibility.
Besides a list of things Hubby does qualify about he must have..

 A)Ability to speak limited to approximately ≤ 6 intelligible different words
in the course of an average day or in the course of an intensive interview.
**Hubby can still have fragmented sentence conversations that make some sense.

B) Speech ability is limited to the use of a single intelligible word in an
average day or in the course of an intensive interview

C) Ambulatory ability is lost (cannot walk without personal assistance.)
 **At this point, I have the ability to get him up and get him to appointments. He can help with transfers and can walk very short distances as long as he has something to hold.

D) Cannot sit up without assistance (e.g., the individual will fall over if
there are not lateral rests [arms] on the chair.)
** Close on this one, he can sit up for short lengths of time on the side of his bed but eventually tumbles over.

E) Loss of ability to smile.
**Hubby can still smile.

F) Loss of ability to hold up head independently
**Hubby can still hold his head up.


One or more of the following conditions in the 12 months:
Aspiration pneumonia
Pyelonephritis (kidney infections, I had to look it up)
Multiple pressure ulcers ( stage 3-4)
Recurrent Fever

These have not occurred for Hubby

So our course of action is to stay where we are doing what we are doing until we get there.
Palliative Care .

My team of Drs and our HHA providing comfort, ease and quality of life for Hubby.
We know that there is no cure for Lewy Body. Maybe one day there will be :)

I think I was a little disappointed that Hubby didn't qualify only because I didn't get the opportunity to say, "No Thanks, we're good with what we have " ;-)
One good thing might come out of the process. The lady I spoke with said that she would submit Hubby's HHA renewal NOW (it expires this month)
Let's hope she has a little more pull in getting it through beforehand, but I wont hold my breath, it is the V.A. after all.

Sunday, April 29, 2012


Decision #1)
Hubby has an appointment with the V.A. in a couple of days and at that point we will decide on palliative care/ hospice.
I knew that this would one day be a decision we would need to make and it's been weighing pretty heavy on my mind since we asked for the consult. My mind knows all the positives of it, my heart keeps saying, are you sure this is the time? It is.
I have questions I want to ask.
I want to know if their service will disrupt our (my) support team in a good or a bad way.
I want to know if I can still continue to use the support system that I feel like I had to fight to put in place.
Direct contact with his Neuro, Mental Health and Primary care are a call away if I have concerns.
I know that we have reached the end of the line as far as meds and treatments are concerned so I'm not looking for a straw to grasp. I'm looking to keep the people I feel are helping me and Hubby, even in a limited way, through this journey.
I want to know if we will receive at least the same amount of aide time we are getting now.
If not, As frustrating as it can be, I'm wanting to keep our aide time even if it means renewing every 6 months and waiting weeks without an aide to get the renewal. 
Perhaps I'm afraid to make this step and I'm not realizing that is what the weight of my feelings are.
It's odd how something that I know is good can feel so bad.

Decision #2)
When Hubby learned about this appointment he was sure I was taking him back to respite.
The scene that followed when I told him went from 0 to 60 in angry milliseconds.
His verbally ugly and angry outburst caught me off guard.
I had to reassure him several times that I was not getting rid of him. Although he said he believes me, he still makes comments to the contrary at times.
SO, now I'm second guessing my decision to use respite care as long as he is at this level of awareness and this sensitive to the thought of going.
One day at a time. I live life much easier this way.

Decision  #3)
The night before last, Hubby took a hard fall in the bathroom. He had fallen and smacked the side of his head against the wall. I didn't see or feel any bumps and as hard as the fall sounded and the position he was in when I was finally able to get to him, I could tell he had hit it pretty hard.
It knocked him for a loop and it took a little while to get him off the floor but it took even longer to get him focused on me and answer my questions.
The main was, Do you need to go to the Dr?
No! Emphatically.
Hubby said he had a hard head.
I agreed and said his skull was hard too ;-)
The best I could do for him was get him comfortable and watch for signs of concussion.
I decided to respect his wishes not to call an ambulance.
I watched him closely and our night was very bad.
It was difficult to separate the fall issues with Lewy Body issues.
Lots of confusion, Lots of mobility issues, restless sleeping.
At one point he concerned me enough that I got afraid.
He was shaking uncontrollably.
Not a seizure, not like the last time, different.
I had finally drifted off to sleep close to 1:30 AM when I heard the hand bar chain.
I got up and went to Hubby's bed. He said he was cold and was shaking.
I checked for fever, none.
I covered him with a blanket besides the 2 he already had but he was still cold.
He continued to tell me he was cold so I draped by body on top of him and his blankets and held him tightly until his shaking subsided.
I didn't know what else to do.
When he settled I went back to bed.
About an hr later I heard the same noise and he was complaining about the same thing.
Again I draped him and held him tightly.
I got afraid, I prayed, a difficult prayer.
I asked that Hubby be given some peace, I prayed that my fear would go away.
And I prayed that if this was the time God intended to take Hubby, that I would be willing to surrender him.
Now that all sounds like it came out easily but I assure you, it did not come without hesitation, chastisement for myself for thinking that way and many tears.
Hubby settled down long enough that I felt comfortable to leave him and go back to bed.
I cat napped the remainder of the night waking to every sound.

Decision #4)
A week or so ago, the owner of the gym I attend had planned a gathering and I was invited.
I asked our son, Sonny Boy, to stay with his father so I could attend.
Sonny Boy agreed as it worked well with his work schedule and I was looking forward to a little time away.
The day (yesterday) finally arrived but it happened to be the day after Hubby's fall.
Hubby was out of it still.
He didn't remember falling and couldn't understand why his head hurt.
On many occasions he asked me why his head hurt.
He conversed little and slept all day. I even had to wake him to go to the bathroom.
Walking was gone, so wheelchair rides and physical assistance was necessary.
As the day moved on I wondered if I should go ahead with my plans.
All the what if's crowded my mind.
Hubby showed no improvement, but also no decline and I had to trust that Sonny Boy would be okay to stay, after all, he was capable and if he needed me all he had to do was call.
I decided to go.

Decision #5)
I am SO happy I did go!
What a relaxing couple of hours without thoughts of caregiving and errands that needed to be run.
I wasn't on a time schedule, other than my own.
I wonder how long it had been since I was able to do that.
I think 5 yrs!
I arrived and was happy to see many of the ladies I knew and met some new people.
I did realize I need to work on my social skills!
A display of food items and beverages was available and we all indulged in the spread.
It was a lovely evening, carefree and relaxing.
When I returned home, Hubby was still sleeping, I woke him to say hello.
Sonny Boy said he never moved while he was there.

Today Hubby is awake and alert. He slept all night.
His mobility, even as limited as it is, was back.

Yes, I believe I made the right decision in going.

Saturday, April 21, 2012

Ours, Mine and His

Once upon a time, a long time ago...
In our world we lived on the schedule of the children and husband. 
Hubby lived on the schedule of his business and the business I told him he had with our children. (He had to be reminded)
In our world there was freedom to just go if something was needed from the store or we wanted to visit a friend or family.  The children were loaded in the car and away we went.
Every day at 3 :PM Hubby would gathered at a favorite place with friends for coffee.
Every Sunday and Wed we attended church.
Every Sunday afternoon was nap time, every Sunday night was "Fend for Yourself" or as others call it, leftover night.
There were school functions and social functions.
In our world, adapting to each other and teaching the children to live in and adapt to it, was just part of raising children, being married and being a family.
In our world there was freedom.

Then our world was divided in two by dementia.

It became My world and Hubby's world.

Our worlds mirror each other at times.
The same, but opposite.
Most days our worlds look nothing alike.
It is then I have to decide which world I will live in at the moment.

Our freedoms have slowly faded away.

Routine and schedule do not work well in Hubby's world.
Things need to progress at whatever pace he needs when he wants and needs it.
Routine and schedule have to be in my world.
The schedule of Hubby's Home health Aide (HHA) allows me to run errands and take a few mins to care for me in my workouts.

When appointments for Hubby are made, pulling him into my world takes some effort.
Preparation and time allowed needs to be made.
It isn't always easy to get him into my world.
I'm usually as exhausted as he is by the end of the day and we both fall back into our own worlds.

At the beginning of dementia, I tried so hard to get Hubby to live in my world.
I tugged and pulled at him but the gravity of Lewy Body was too strong.
We've had some wild rides because of it too. Many of those rides resulted in hurt feelings, anger, and tears, from both of us.
Logic and reasoning , for the most part, are gone in Hubby's world.
It's not like he forgot or misplaced something, it's just gone, stolen, dead, never to return.

Logic and reasoning are still alive in my world although there are times when I forget or choose, not to use them.
Dealing with Lewy takes a delicate balance to get between the worlds. Some days I do tire of the walk but I continue it.
Caregiving is not easy every day, but it's not hard every day either.
We laugh and some days are quite pleasant.
Even in very difficult times there can be a silver lining.
Hubby and I took a trip to lunch the other day.
Once we finished and I payed us out, Hubby said he wasn't feeling well.
Restaurant owner took charge of Hubby's wheelchair as I got the door and the two of us watched as Hubby had a mental and mobile meltdown. Hubby slumped in his chair and became semi unresponsive.
We approached the car and realized Hubby had to be physically lifted from his chair to the car seat.
This was actually a first in this situation for us.
Most meltdowns happen at home.
In order to move Hubby, I needed Hubby to help me help him by wrapping his arms around me.
First I had to get him to acknowledge that I was talking to him.
I had him look at me while I explained I needed him to hold on to me.
I had to repeat this a few times to get a response and move Hubby's arms onto me.
It was then Hubby said, "I'd rather hold on to you than anyone else."
I smiled at Hubby, held his face and kissed him, then lifted him into the car seat.
Restaurant owner helped tuck Hubby in and close the door while I loaded the chair.
He was very kind and compassionate and I thanked him as I got inside the car and buckled Hubby up.
When we got home I got him inside and in bed and I sat on the floor by his bed with my head on his chest.
He put his arm on me.

30 years ago when Hubby and I decided we wanted a life together, I wanted to be a better person for him and for me. I still strive for that daily, for him, because of him and lots of times, in spite of him. I fall short so many times but my faith in Jesus and my relationship with Him keep me moving on to the next day, to continue to love, and forgive not just Hubby, but myself and others and most of all Lewy as odd as that sounds. I have learned so much because of Lewy and instead of staying angry and bitter towards something I can not control and have done everything I can in my own power to change or fix I have learned to accept it, as much as I dislike it, for Hubby's sake as well as mine. 

I have learned that I can't force Hubby to live in and adjust to my world without backlash, so I have to visit his world in order to be a better caregiver for him I MUST bridge the two and step into his more.
Am I missing out on anything, maybe. Maybe I'm not experiencing "life to it's fullest" in the eyes of others.
But this is Hubby's fullest now and not only am I experiencing it, I'm getting to contribute to it.

Statistically I will outlive Hubby.
My life hasn't ended in my caregiving role.
I will move forward when Hubby passes on. I have no idea where or exactly how. But that's not today's decision.
I will not say what I chose to do was in vain.
I will not have regrets that I "missed out on life"
I will not feel like I sacrificed everything even though I have given up, willingly and sometimes reluctantly, a lot of things to stay here.  
I will rejoice that I didn't miss out on Hubby's life and appreciate and treasure the time we do have. As limited in freedom as it is. I still have the freedom to love Hubby anytime I want to, and I do.