Next Steps

I hope this makes some sense because my thoughts and emotions are so scattered lately I feel like Hubby and I are in an emotional blender.

I've been avoiding, for the most part, the caregiving www.
I've struggled to support myself and Hubby and unless the support was "easy" to give and receive, I've remained silent.
Unless I was sure what to ask for or offer, I've remained silent.
To the majority of my family and friends, I've remained silent.
Now is the time to break the silence because the silence is breaking my heart.

Hubby has had some serious anger issues. Nothing physical, just verbal. And that's not really the problem since we have lived with his PTSD for our entire married life, I'm used to it. In the past, he could leave or I could suggest he leave and go someplace or I could until he cooled off. But now he feels trapped. Trapped by me, the Drs and his Lewy Body Dementia. He doesn't want to be here. He's mad at me, the Drs, his illness, the whole world.
If I was in his place, I would probably feel the same way.
He's also sad, very very lonely, frustrated and scared. All the things I wanted to prevent for him and have not succeeded in doing right now.
All I can do is watch as he fights with his emotions and listen as he vents his frustrations. Most directed at me and admittedly they hurt but I understand where they are coming from so I try my best to ignore the feelings that come because of his words.
What can we do? How can we fix this? We are maxed out on meds and some of my big fears are more would make him "drugged" something neither of us want. He's sick of taking pills anyway and I don't blame him.
He has had some very lucid moments and we have talked about his dementia, his feelings and a few of his fears. Then HE suggested that perhaps placement would be the best.
Oh my heart! I HATE Lewy Body Dementia. I hate that he can have these moments of clarity. I HATE that he realizes what is happening. I HATE HATE HATE IT!!!

At his suggestion, we have talked Nursing Home placement on several occasions. Sometimes he says he wants to leave, other times he says a Nursing Home is not where he wants to be, but he doesn't want to be here. Some times he says he doesn't want to be a burden. I've tried to assure him that he is not a burden, perhaps difficult at times but never a burden.
He and I have both spoken to our children about it.
I have to add that we are very blessed with the support that they offer us. They may not like the situation but they support whatever decisions needs to be made in the best interest of their father and me. How did I deserve such amazing gifts when I received them?

It took a long time to bring it up to them. Hubby and I both fought emotions about it. We've cried together and separately, I've prayed for and over him. I still fight back tears and it's taken alot of emotional strength to put these words down. Even more when I hit the post button.

I've read more than once that it's never too early for placement when dementia is a concern. But it can come too late.
Late for the caregiver who is stretched beyond their capabilities and health. Late for the loved one who may do something that could potentially be life threatening to themselves or to others.
And if you're already talking about it, now is the time to make the move.
My head knows all of this, my lips and fingers have repeated it to others. My heart wont get on board.

I've tried to find things for Hubby to be engaged in yet he refuses. So, I wonder if a different environment and the company of other people would be in his best interest. At least that way he could refuse to participate or engage with someone other than me.
I'm sure it wouldn't help with how he feels about his illness, the Drs, the situation or me and all of his losses but perhaps with others he could "vent" to, it would help release some of his anger. Maybe he could deal with it better. I don't know the answers. I'm grasping anything I can to get even a small hold on a constantly slipping situation.

Neither of us have decided anything but Hubby wants to talk to a Dr about it. He has an appointment in a couple of weeks.
Confession : His wanting to do this feels like a bit of rejection of me but I have to shake that off and realize, this isn't about me, it's about what's best for him.
I did tell him if he wanted we could tour a facility and nothing had to be permanent so if he did go in and then decided wanted to go home, I would be loading him up and bringing him home.

Please say a prayer for us. We need clarity of mind and sure direction.

In the year 2009

I found a couple of videos I had from 2009 when Hubby was admitted for testing to rule out hydrocephalus. I knew I had written a couple of FB posts before I ever started blogging so I found them and thought I would share them both.

May 30, 2009

Anxious Heart

So are you ready for a blow away?

Since Oct of 2007 Hubby has had a diagnosis of Lewy Body Dementia. A combination of Parkinsons symptoms and Alzheimer symptoms. I've watched the other half of my heart decline for almost 2 years now. Some days at a very quick rate and some days unchanged. It has been a roller coaster ride for sure. These days he can't be left alone as he is a fall risk so I COMPLETELY understand what the expression "shut in" means. I'm grateful for this social network as here is as close as I get to spending any time with my family and friends and I can still feel a part of their lives.

Life may change though. Hubby had a Neurologist appointment last Thursday. They had the CT back from his head and it showed LARGE amounts of spinal fluid in his brain. Yeah, I know that doesn't sound good BUT they are going to admit him for a 3 day spinal tap and relieve the pressure from his ventricles and HOPE it makes a world of difference!! They could see an immediate change! Could it be that simple? It sounds almost too good to be true. Could he regain some of mobility and thinking back or has he had too much damage? My mind and heart are in a whirlwind with hope.

Then I have to think of all negatives also. If it helps enough, they will do brain surgery to insert a shunt and drain the spinal fluid. His age (72) comes into play here with brain surgery. IF he actually has Lewy Body plaques in his brain also, then we run the risk of an anesthesia catapult into a worse condition as lewy bodies and anesthesia are like bleach and ammonia mixed. Right now he is calm, not anxious, he feels safe and protected. Although I feel he is missing out on much of his life he is content where he is. Where will this procedure leave him and in what condition?

So many questions and more prayers asked as we are faced with possible life changing decisions. The biggest and hardest prayer is "Thy will be done". Following through with that though has been difficult as I find myself guarding my heart. I'm afraid to have him just to lose him yet again. I'm glad my Heavenly Father is my comforter and keeper of my soul. I could not make it without His hope and love. I look toward the day where there is no sadness or confusion. Just worship.

Wanted to share, keep us in your prayers.
Kathy

Jun 19, 2009

Home from the hospital

Current mood:disappointed

My Hubby just spent 4 days in the hospital ruling out Hydrocephalus.
He endured a spinal tap for 3 days in a row with very little to no change in his gait or cognition.
I endured 3 nights of being away from him as the V.A. would not let me stay with him.

My fear of him getting confused, anxious and wandering or falling, then the staff giving him meds to keep him calm tearfully spilled over onto the poor Dr. I was assured that they would NOT give him any meds other than what was in his chart for any reason. A little calmer I left and double checked personally with the head floor nurse (I don't think she was too happy with me) before I absolutely had to leave. Came home and crashed and returned the next day bright and early. He had a bed alarm on his arm so they knew if he ever got out of his bed for any reason.

The tap however was not successful so hydrocephalus was ruled out and a shunt surgery is not even in question. I suppose the only thing accomplished was that my poor Bobby got a headache and is a little grouchy. We are however back to the , Why can't I drive? phase. I'm not sure how long that will last.

So it looks like Lewy wins again. And I'm too tired to give it much thought today.

Just wanted you all to know how things went.

Wrapped up

Over the last couple of months I feel like, no, I have been wrapped up in my own little personal emotional bubble.
Why do I do that? I'm not really sure. Perhaps it feels like a safe place to protect my heart and mind while I sort through the jumbled mess looking for solutions.
Hubby is dealing with some strong emotions from his Lewy Body Dementia his own self so as we sort through these together and separate I'm finding it difficult to blog about at this time.
gasp! I KNOW! Normally I'm an "everything out there no holds barred" kinda gal.

But this latest Lewy Body Roller Coaster ride is leaving us feeling some motion sickness.
I always know where to go for the support I need. I feel like we have a good team with Hubby's Drs and I feel secure in knowing if I need them they are willing to work with me and Hubby to give him a better quality life. But the majority of my support comes from on line sources that I am so very grateful for. Besides my FaceBook family and friends, I have a Lewy Body spousal support group, a place I can find valuable information from spouses that live with, care for and love those suffering with Lewy body Dementia,
There are FaceBook dementia groups where we can give and take in real time.
I know my adopted support family is there for whatever I need.
I have prayer warriors and well wishers and virtual huggers.
I cherish you all and I have no problems asking for the support I need. Yet at this time I'm not sure exactly what kind of support I need. I think what I need is less "Oh, I'm so sorry", and more ideas, or solution, and lots of, I'm praying. I like the support that makes me feel like a stronger caregiver when I'm at my very weakest. Support that builds me emotionally, allows me to vent and cry then hands me a tissue and picks me up. Sometimes even snatches me up by the collar, shakes me a bit and sets me back down. That feels like support.  That feels strong. That feels like love.
The sorrys make me feel unstable and not strengthened.
So I suppose I'm hiding from the sorrys these days because my emotions are sitting right behind my eyes and under my skin, ready to collapse and I need to get a grip on those.

So until then we're making do the best we can and know how. One day at a time and seeking the smiles.
One BIG smile was very evident the other day.
I was given the gift of clarity from Hubby.
He and I were grazing in the kitchen. He sat down and started a serious conversation with me about dementia.
We talk openly and honestly about it, no secrets or hushed tones about his Lewy Body. He didn't cause it and he can't help it, there is no shame. We talked on and off for quite a while.
After a long silence he asked me a question about something earlier in the day. 
I said; "I don't remember", 
to which he replied, "Honey, are you getting dementia?" 
Then he smiled and cut his hazel blue eyes at me!! 
ROFLOL!!!!! 

That my friends was a beautiful gift all wrapped up with a nice bow :)

Memory Tree

It's the Holiday Season!
At our house we celebrate Christmas.
We celebrate with lights and trees and presents and baking and music.
We remember it's a day to celebrate Jesus' birthday, but He is a constant in our lives all year round too.
If that fact isn't obvious in my life, I have a serious relationship problem that one time a year wont make up for.
Of course as  I  the kids grew older and Lewy Body Dementia moved in we have scaled back on the decorating.

I have learned not to get caught up in the hustle and bustle. Take it slow and easy.
For the most part, Lewy Body Dementia has been VERY selfish with Hubby and my time. Most of the time it seems impossible to leave our home and do anything that isn't a Dr visit or a one stop trip out to eat then home. Most of the time we get to combine those two things, Dr and lunch and home. Makes for an exhausting day for Hubby. IF I'm lucky, I can pop into the grocery store for a gal of milk if necessary while he waits in the car. I try not to make that a habit, only on a have to basis.
I've done most of my shopping on line over the year and last night I had the boxes with a smile (amazon) stacked on my table for wrapping

We are planning a Christmas Eve celebration at our home. I've specifically asked to be the host mainly because Hubby is more comfortable in his own home, even though he doesn't recognize it as such. He can choose to participate or not and I can stay as long as I like and enjoy the company of family I get to see once a year.  I don't put expectations on anyone to join us for celebrations. They have lives apart from us, jobs and weather could prevent them from being there and I have said that any time we can get together is a time of celebration. They just may not have a tree in the living room when we do :)

This year is no different except, this year Hubby asked for a BIG Christmas. Now I'm not quite sure what that meant for him so I'll do the best I can to encourage the family to all come. I'll prepare a big dinner and we can all gather together under one roof. He misses his family.

I haven't done a lot of decorating but I did have a really good idea that I'm sure I stole from somewhere, I just don't remember where. I added my own flair so I don't think I get points off.
I made a Memory Tree for Hubby.
I printed off lots of family photos and clued them on various foam frames. I even bought some clear bulbs and inserted pictures in them. I left one empty. Just a symbolic gesture for me. I think it turned out really nice.

Merry Christmas!

Adventure Seeker

I wrote the following in response to a question by a fairly new caregiver.
He asked how he could make the care of his father an adventure for he and his wife.
I liked my response so well, (sometimes stuff just flows out of my head and sounds good, giggle) I'm posting it as a blog because I think it can relate to others as well as those of us living and caring for loved ones with Lewy Body dementia.

It (caregiving) will be an adventure on it's own, YOU just have to decide the type. Keep your humor, you WILL need it.
Pick and choose your battles.
Don't sweat the small stuff and there will be an overwhelming amount of small stuff.

Find time for you, let your wife find some time for her and together find time for each other. Have a date night even if it's at home.
Sounds like you have a team of 2, add to it and smile LOTS.

Daily write one thing on the calendar that made you smile or laugh, anything at all, try not to repeat. It will be an easy start but will get increasingly hard to do so you will have to SEEK it and eventually you will train your mind to find the positive. Some days may be blank. Try not to leave too many of them.

Ask for advice, others can help you think outside the box. There is a TON of seasoned caregivers willing and able to lend to your list of suggestions. Every person is different, what works for one does not necessarily work for another. Trial and error. There will be lots of error
Don't let things "pile up" Try not to get caught up in the loop of negative thinking. It's too easy of a trap. Say you're sorry, admit your frustrations remember your dad can't help how he is.

Love him madly, even when he is the most unlovable, you won't have to like his actions all the time.

Buckle up! It's a bumpy ride, the twists and turns will make you and your wife bump heads at times. Stay seated and keep your hands and feet and heart inside at all times. You got this!!

In Sickness and in Health

Nov 29, 1981.

It was a Sunday, it was raining.

I remember what I was wearing.

I only had black shoes.

I remember what he was wearing, he wore a tie that his mother still had of his father's.

It was only 9 days prior that the sun was setting when he popped the question and I said yes.

So many things to do in 9 days.

I wanted some type of wedding with a cake and flowers, a dress and people.

Just a few.

And so it was.

We took vows to love, honor and cherish. For better, worse, richer, poorer, sickness, health and forsaking all others.

To this day I can tell you almost every detail about that day 31 years ago.

That very day, Hubby could have told you the main objective of the day, we were there, we got married.
He could have recalled this same information, if asked, for many years.

He was such a sentimental guy. ;-)

These days because of Lewy Body Dementia, Hubby doesn't even remember that we got married.

He doesn't remember me as his wife.

It's difficult to celebrate the day so I will just happily remember it.

It was filled with hopes and dreams of what was and what would be.

Promises of the day, for the day and for tomorrow.
We may not have known it then, but God had big plans for us by putting us together.
The dynamics appeared all wrong and we were given a 6 month expiration date by many. 

The journey has been long and hard, sometimes unbearable.
Other times there was bliss and blessings of magnitude. I can name 3 right off the top of my head. That's the better or worse part. 

Today is our Anniversary Hubby.
Thank you for making me want to be a better person for me, for you and for others.

You continue to forge me daily.

I hope you feel loved, cared for and safe.

I love you :)

Beginnings and Endings

It was Oct 18 2007
I don't remember the weather but I do remember the feeling that someone had removed all the air from my lungs and I couldn't breathe. This was the day we received Hubby's official diagnosis of Lewy Body Dementia.
We were given 2 probables to narrow down from because there is no test for Lewy Body so it's a process of elimination. I had an idea of what the Neuro was thinking. I had researched anything I could find. I was preparing for it. Hubby didn't want to know, he didn't care and spoke little to nothing about it. Then the moment came, the words, Lewy Body Dementia, my mind raced to everything I read. I was trying to sort it out but I felt like I couldn't breathe. I remember saying, "Now what?"
Every day with Lewy is a new day.
Every day I still find myself asking "Now what?"
Every day I try to figure out a game plan and every day I try to find a way to add some quality to Hubby's life.
Every day I pray that Hubby feels loved and safe.
And every day I wonder if there is something I can learn to apply to our life for him, for me and for others.
 
I learned something important when Hubby had to take a trip to the ER a few weeks ago.
I realized I needed to make a folder of  information to have readily available to hand to emergency personnel. Trying to answer medical questions when my mind was racing, was difficult. I fumbled looking for insurance info and ID. The only thing I did have readily available was my Lewy Body Dementia info from heplguide.org I keep copied off and in my car for educational purposes.

I informed the ambulance driver that Hubby had a living will and I was informed that in our state, Arkansas, a living will is not accepted as a DNR unless it is a Physician signed DNR order. So I had to get a separate order signed by a physician.

It's an odd feeling knowing that a piece of paper, that I have control of, can be the difference between Hubby's life on earth or his eternal life in heaven with Jesus.
Hubby and I have discussed our end of life issues. We know what we want and don't want. I hope I'm not selfish enough to hold him in his current or progressed condition should the time to make that decision ever arrives. It is my personal opinion that dementia is a form of suffering so I hope my love for him is stronger than the love for myself and I am able to hand over the papers with a heart that knows I'm doing what he wanted and / or what's in his best interest.

I made a copy of the DNR and placed it in a Bright Yellow Folder along with other pertinent information . Two folders to be exact, one folder in the house , easily accessible to hand to on site emergency personnel.
The second I carry in the emergency bag in my car. If another trip is needed to the ER I will just hand them the folder.
I keep the originals in my purse.

I got the idea for the folders from another caregiver.
I love when caregivers are so willing to help others and share information as well as encourage.
I find caregiving to a little overwhelming at times, not as much physically as mentally and emotionally.
It's times like that when I withdraw into myself  finding a way to regroup and carry on. 
I know I can always find just the right shot in the arm or swift kick in the pants when I seek out the advice and support of other caregivers.
I hope that I contribute to the support of others.
Maybe this will be of some help.
The following is the information sheet included in Hubby's folder

~~~~~~~~~~~~
Name
Ethnicity
DOB
Religious preference

(Name), Korean War Navy Veteran,
has a primary diagnosis of PTSD
and Lewy Body Dementia (info included)

His Wife and GUARDIAN (court order included)-(name) is his full time caregiver
(Name) is a fall risk so assistance with standing and walking and transferring may be necessary.
He may have a difficult time hearing and/or understanding spoken and written words.
He wears glasses, (dentures?) and had cataract surgery (date)

(Name) allergies

Due to(NAME) Lewy Body Diagnosis certain meds should be avoided like neuroleptics/ antipsychotics meds, anesthesia if at all possible. These types of meds can severely increase his Lewy Body Symptoms and could be potentially life threatening for him.

A list of current meds (NAME) is taking is included

(NAME)'s Primary care is handled through
Drs Name
Address
Phone #
Mental Health Dr
Neurologist,

EMERGENCY Contact is
(name & #)
secondary
(name & #)

Included in this packet are copies of
ID (copy of drivers license both sides)
Insurance (copy of card or any other Insurance info)
Guardianship,
Advance Directive,
DNR,
Most recent medication list
Most recent lab results
Info on Lewy Body Dementia

Originals are with his wife, (name)
~~~~~~~~~~~~~~~~~~

So it's been 5 yrs since that dreadful diagnosis.
But there is also good news.
You see, Gods timing is always perfect.
As we sat with the Neurologist after he gave us the news, my cell phone rang.
Normally I turn my phone off or on vibrate and ignore it when we see the Drs.
But this time I did not, on purpose.
This day we were expecting news about a new grandchild.
And sure enough, the call came.
I looked at Dr and said "I'm taking this."
In a matter of minutes the world that turned upside down uprighted with the news of our grandson.
Perhaps that was just what I needed to get my heart beating again after having the breath taken away.

It's odd how we can go from one emotional extreme to another in a matter of moments.
I'm just glad the good news came second.