Chronological PDF to read

Thief Lewy Body Dementia Chronological PDFOn Saturday, Feb 11th, 2017 my husband will be gone for 3 years. I'm still actively trying to educate about Lewy Body dementia and offer practical caregiver support.
On more than one occasion I have been asked to make this blog into a PDF for chronological reading. So the blog is still helping as I felt it would. I have tried to do so over the course of time but reality is that re living the experience has been difficult so it has been a slow process. I am pleased to say that I have finally finished and it can be found here. Please feel free to share.
Thank you,
Kathy
Thief Lewy Body Dementia Chronological PDF

Visual Learning about Lewy Body Dementia

It's been 2 years since my husband passed away and I still feel heart led to be actively involved in caregiver support.
I know this will be the first post anyone sees on this blog so I wanted to share this visual lesson I have given on Lewy Body Dementia. If you can understand this, you might understand Lewy and other dementias a little bit more.
This is also a hands on activity for you to do at home and share with others, so here goes

You need

Bubble wrap

Highlighter

This brain photo *Thank you to Stephen Holland at hiddentalents.org for his permission to use it.

Brain Functions

Print this picture out on a regular sheet of paper

Cut a piece of bubble wrap a little less than the size of the paper

Play with the bubble wrap while you're reading the brain functions, you know you want to pop some bubbles!

Turn the bubble wrap to the smooth side and use the highlighter to mark the popped bubbles.

Turn the bubble wrap back over and place it over the picture.

THIS represents the beta proteins of Lewy Body Dementia!

Lewy bodies are diffuse, meaning scattered or spread over a wide area, not concentrated. 

Notice what areas of the brain are under the highlighted bubbles.

Now fill the bubbles back up with air.

What do you mean you can't? Just do it!

You see, the bubbles are broken so the best you can do it try to patch them (meds) or in some cases if the bubbles air was only transferred you might be able to shift some of the air of another nearby bubble into the highlighted one. THAT represents the fluctuations of LBD, seems to decline, now a rebound.

But you realize that over time the air will eventually seep out and the bubble will no longer be inflated.

Lewy Body dementia is a total body issue, not just a memory one.

We give meds to alleviate some symptoms, it's the best we can do.

Even meds for other things might not have the same effects on their intended issues over time.

We're trying to MAKE a dying brain that can not, function normally. Sometimes we can force it for a while but the brain, the mainframe of the body is shutting down totally, the bubbles continue to pop and as of yet, can not be reversed or repaired.

I hope this visual helps you understand a little bit more about what is happening to our loved ones.

March 3, 1937 - Feb 11, 2014

I've been trying to word this for the last 2 hrs.
So I'm just closing my eyes and jumping in.


Living moment by moment I hated to sleep, the kids hated to leave. We all needed rest. Sonny Boy spent 2 nights keeping vigil over his father for me so I could sleep. The kids still had to work. The Lord and I had a conversation about Hubby and I admitted that I couldn't control when it was time for Hubby's body to move on, and I needed my own sleep so I gave the vigil to Him.
We began to feel like we were crying wolf as Hubby's body fought every odd.
Did I ever mention Hubby liked to play poker in his younger days?

The wait with Hubby continued. I wrote and posted a blog post in the wee hours of Monday morning. Then I actually rested a few hrs. and I woke with a sense of peace, oddly though I wasn't aware of that particular feeling until later in the morning. I gave 4 hrs sleep the credit. I like to think about things, the feeling was gentle but obviously something. Resolve? Acceptance? Sleep deprivation? Had I finally gone mad? Was I even awake and this is just a dream? I was grateful for it though. I even shared the experience with others.


Hubby's breathing changed again, no more pauses, rhythmic, steady, no rattling. Stable for the moment. STABLE?!
Why are we still surprised?
Hospice Dr and Hospice nurse came by and checked Hubby. Lungs sounded good. I told her I felt like we were meeting the goal of keeping Hubby pain free, calm and peaceful. But I wasn't letting him be moved any longer to keep that goal. She suggested letting the aides go ahead, clean him up and reposition him. He wasn't responding to any stimuli so the concern of distressing him was surely passed. I agreed and they did. He looked so nice and comfy when they finished. Breathing hadn't changed either. He did have an infiltrated IV so they needed to do a site change on that, but other than that issue, Stable, for the moment.
Side note – because I hadn't let him be repositioned, taking in the fact he was on an air mattress, and we were still keeping his heel elevated due to the edema blister which was actually healing. I never gave a thought that his head needed moved. He had laid over on one ear long enough to cause it to bruise. I felt terrible and keep being reminded not to beat myself up over it. So I am trying not to.
Monday was coming to an end. Everyone went home. My peaceful feeling continued until around 9 PM or so, I went to the bathroom, walked out and burst into tears.
The moment passed, I held Hubby's hand, I stroked and kissed him, I told him he was loved, over and over. I had to say it more than once to be sure he heard me. I finally laid down to get some rest.


At 2AM Tues morning, Hubby's breathing changed again, harder, but still steady. My peaceful feeling didn't change, it too was steady. The morning wore on. He still looked comfortable and peaceful. I was pleased. I made sure his head was positioned off his ear.
Once I had laid on the side of his bed and it repositioned him. In an effort to not disturb the aides I tried to adjust him myself but failed so had to call for help to get my husband out of the pretzel shape I managed to put him in. kidding! He was just leaning but it took two of us to straighten him up.
The kids filtered through during their lunch breaks. I was text updating those that had to be out of town. One of his daughters was sitting with me and we were chatting while I sat by Hubby and held his hand. I was sharing a very humorous incident about Hubby with her and she leaned toward her father and said, well, we never knew you had those abilities. We laughed and, still holding his hand, I leaned over toward him and said, “I knew” and winked. More laughter as I also said “We had a good time, but take it to your grave” Hubby's breathing got quieter but still steady. We looked at each other then back at Hubby as we realized the breathes were disappearing, 2 breaths and then none.

The ride on the Lewy Body Roller coaster ended.
The seat belt that had us held prisoner was removed and we exited the car.
Hubby walked one way and I watched him leave.
Lewy didn't win, Hubby is whole again.
My heart is broken, but my faith is strong.


Praying for strength for our children.
Bobby Conard Lowrey 03/03/1937 - 02/11/2014

This week is not for the weak

By now I thought I would be writing to tell you about Hubby's passing.
I would love to say that after his sedation he rested peacefully and drifted off into eternal rest. Just like in the movies, eyes open, eyes closed, good bye.
But after a week, that has not been the case.
I will say that I feel we accomplished our goal in keeping Hubby  pain free and comfortable.
The Hospice In Patient staff has been phenomenal! My goodness, their attention not only to Hubby and his comfort but to me and our family has been such a blessing.
I can't say enough good things about them.

I thought I would start with the good because the rest of this will not be an easy read in any way. At all. You were warned.
It's been an unbelievable week,
Hubby's declines continued in many ways.
We continue to keep him sedated for his comfort.
Daily we watch as he slips farther and farther away to death.
It's this time I like, and need, to believe that we were a body before we had a soul and God in His mercy and unconditional love of those he has a relationship with through Jesus, has already removed Hubby's soul and it now resides in heaven with Jesus leaving the body behind.

Thurs Feb 6 Hubby's team of family and professionals believed death was right around the corner. All signs pointed that way. The time was close, perhaps hours. Of course knowing that nobody can give a time or date we are left to wait. The children all assembled to be there as his body departed. It would be their closure since Hubby's wish was for a direct cremation with no services.
We assembled together, we shared stories, we caught up on each others lives. It had been the first time all 6 of Hubby's children had been in the same room at the same time for many many many years. It was a bitter sweet moment. Too bad Hubby couldn't participate.
We waited and waited. And waited. We brought in lunch, then supper. We laughed and cried. We waited.
Things seemed to stabilize, Hubby plateaued, perhaps this wasn't the day. The kids reluctantly went home and I promised to update with any and all changes.

Fri Feb 7 Hubby took a decline, the kids were informed, they all ran back to his side. We waited and waited, we brought in lunch and supper, we waited, we laughed, a lot (better than crying) we also cried. We all sat by Hubby. We stroked him and held his hand. We kissed him we spoke to him. Did I mention we waited?
Another plateau.

Sat Feb 8 Hubby's breathing became horrible! The kids all returned, vitals were all over the place. Up  down, better, worse. Hubby was short circuiting. The breathing became a struggle. His lungs filled, he rattled. It was gross. It is gross. Then the hard breathing combined with that made it the already stressful situation more stressful to see Hubby's body almost convulsing to breathe. It was heart breaking and emotional torture for those of us here to see it. Personally, I was trying to pray Hubby's body to go on. Somehow, someway it needed to stop. It needed to stop before my nerves shattered along with my heart. It needed to stop for the kids too. I felt guilt for wanting him to leave so soon and sorrow that he would be gone, completely.
Eventually we were able to get his breathing settled down enough to rest our hearts and minds. I am so grateful he is "not there". No responses to anything, light, sound touch.
My emotions are everywhere and I'm fighting to keep them contained to care for "business at hand".

Sun Feb 9, The Hospice nurse came back for another check. We are all amazed at how remarkably strong the body is for self preservation. Hubby still lingers on, but we cant see how. Again we assembled, again we ate, we laughed, cried and quite frankly as many times as we have gotten together and brought in food, we may be developing a reputation for the party room. Hubby's breathing was still settled. Shallow with pauses that were in reality close to 30 secs but felt  like hours. Every time he paused breathing my heart clenched, every time he took a breath, it did the same.
We all wondered what Hubby was waiting on. I've read and heard stories about loved ones waiting for something before they move on. We had no idea what that would be.
I teased that because Hubby was getting a 2 week admission from the VA he wanted his full time to get his money's worth. I reminded him we were only paid up to a certain day. He needed to get off the fence and pick a side. I told him he was ruining Valentines day but I was reminded that any time he sent me flowers I always got the bill to pay. Our weather turned to ice, I asked him to wait. Maybe I need to get off the fence.
Yes, I know I have a morbid sense of humor.
Mostly though I have leaned on his bed to hold him, stroke him, kiss him, tell him how much he is loved.

I have my moments when I am overwhelmed by the emotions of it all. There are times I think I can't hold it together any more.
I pray for the release of Hubby's body.
I pray for the opportunity to finally grieve.

Through it all our family has been an amazing support system for each other.
We all hurt and we all are dealing with this in our own way but we remain united like a  braided chord to keep us strong. Sometimes we fray but still stay strong.

And speaking of support, my caregiver friends called to check on us while we are here at the hospital. G-J even went so far as to have "coffee" by text with me. We shared coffee pics and shared the idea and Trish, my blogger friend at robertssister.com took it a step farther and added #coffeewithacaregiver to her FaceBook and Twitter feeds. It's a nice feeling to look forward to something fun and positive in the day. It offers me comfort by reminding me that in the too quiet moments I am not alone, I can have coffee with my friends no matter where they are in the world.

On Friday Feb 14th at 9AM CST we hope to go one step farther and include as many people as are willing to participate in joining us for coffee. Easy to do, Pour yourself a cup of coffee, add a napkin note of encouragement, take a pic and post the pic on your FaceBook, Twitter, Instagram or any social network work with the hashtag #coffeewithacaregiver

Morning, Sunshine, or not

Yesterday Hubby woke up!
I was actually surprised and pleased.
But the pleasure was short lived as it became apparent Hubby was having a tough day.
Besides communication issues his delusions took full charge.
Hubby cried as he tried to, in hushed tones, explain he has been taken out of the hospital by 5 men, carried off into the woods and assaulted.
It was difficult to understand his story but I pieced that not only had that happened to him but to others and he feared that he was getting blamed and the police were looking for him to throw him in the pen.
His tears broke my heart, his fear was real and nobody could ease his mind. The story continued through the day in typical Lewy Body Dementia fashion. It came and went replaced with other incoherent conversation.
He slept through the night but our morning started at 4am.
Hubby was calling for me in weak tones. He even stated he was very weak, so tired. I had to lean in very close to hear him. I cried and prayed over him. I hugged and kissed him. I told him over and over how much I loved him. I held him as best I could from the side of his bed. I noticed how small he felt and fragile. My heart was hurting for him and for me.
His hallucinations picked up where they left off, his delusions were gaining speed.
He extended an arm out to the air and shook hands with an individual I could not see.
Then everything fell apart.
He was mad, mad, mad!
I had no idea why but I'm blaming it all on the invisible guy I'll call Mr Lewy Body Dementia! Troublemaker!
Hubby didn't just call for me, he yelled for me in loud, strong clear harsh tones. Demanding my presence. His anxiety shot up and he even became combative.
Once he told me to get my butt off the couch. I was sitting in a chair right next to him.
I offered anything I could think of to help settle him, water, coffee, juice, cola, but he continued his demanding. He was swearing and even threw his padded shoes he wears that protect his fragile skin on his feet.
He wanted off the bed.
I was standing at his side, he asked me if I was going to just stand there twiddling my thumbs. I responded that I didn't know what he wanted me to do. He gave me the stink eye , pointed his finger at me and said "FIRED!"
Great, I just lost my job so apparently there is an opening for a caregiver for Hubby. Any Takers?

It was a rough morning and anxiety was rising for everyone here. It reached a climax when he grabbed his IV lines and pulled his medication pump until it was trying to yell for assistance as much as Oldest daughter and I were while wrestling the lines away from him and pushing buttons for help.
FYI, don't let an older persons ill health fool you, they can be VERY strong when they want to be.

We eventually got the lines away, Nurse came and fixed the pump and checked everything out to make sure it was all working properly. She called the Dr and he ordered some more anxiety meds but when she came in to give them to Hubby he tried to fight her so I had to physically hold him down.
Poor Hubby, to see this happening to him is so distressful.
He's not even "here" when he is awake and he is experiencing fear and anxiety more than not. There is no need for him to suffer like that so a decision was made to sedate him and keep him that way. Now he has no stress in his face. His forehead is smooth. He doesn't jerk or twitch or move around. No incessant chattering or pulling of invisible things. No tears, no fears. Just peacefulness and calm.

He has seen his loved ones, they have all said their goodbyes.

I've been saying mine since 2007

 

Fast and Furious

Lewy can run like an out of control freight train.
This is our experience as of late.

I had been seeing the declines coming in Hubby. I didn't want to acknowledge them at times but I could still see them.
His speech was more garbled, his cognition was worsening, less mobility, you know, that stubborn pull himself along mobility, hallucinations had increased as well as delusions. They weren't pretty. He was losing weight, eating less, staying up for days on end or sleeping. Falls were still happening. 18 of them from Nov - today. But other than restrain Hubby I couldn't keep him from trying to get around.
Thanksgiving quietly came and went, Our 32nd anniversary did the same as well as Christmas. This year I bought a very small table top tree. I bought 2 actually, one for the living room and one for the bedroom where Hubby stays.
The hallucinations were causing more anxiety for Hubby. To him they were hostile and threatening to self, property and others. So bad that we made a pre Christmas visit to the V.A. ER to try and find something to relieve his suffering from them. And I TRULY believe these hallucinations are a form of suffering.
Now I know this is pretty intense discussion so on a lighter note, while at the hosp to deal with hallucinations, guess who walks in? Santa! Now try explaining that the people Hubby sees are not real but santa is!
Back to the intense, we decided to try a small dose of a new med, seroquel for the hallucinations. I watched him like a hawk for side effects but nothing really stuck out at me. Declines continued.
One thing that did happen as a positive, he had always had a terribly dripping nose. It was awful and we have tried every OTC and prescription we could get to combat it with no luck. Hospice had a patch they suggested. It is used to help with excess secretions so I read all the info and again watched him like a hawk for any of the gazillion side effect warnings listed on every bottle or box of meds. The only thing I did notice was the runny nose STOPPED! It was like a miracle patch! Everyone lift your hands to the air and say, awww!
So the running nose stopped but the declines didn't. What it feels like is we were sliding down the side of a mountain with some sort of footing until we lost it and started tumbling and grasping every shrub, limb and rock we could find along the way to slow us down with no luck.
Right now this is how the blog is going to go, fast forward.

 Jan 19, Hubby had a catatonic episode. He lay in his bed with a blank stare or eyes closed, non verbal and non responsive to anyone. Not moving and he stared at you like he was looking through you. At first I thought he had a stroke but slowly he made some responses that made me doubt that. Then a couple hours later just sat up in bed like nothing happened. The next 3 days he was sick to his stomach and throwing up. Then it all hit the fan. The following is a copy paste of a group message I sent.

Jan 25- 

Yesterday after a scary episode with my husband where he turned violent. Besides kicking me and trying to punch our daughter, he put a choke hold on our cat and tried to strangle it. Our daughter and I both had to wrestle the cat out of his grip.
I had to get an amb to take him to the VA and he is admitted to an observation ward.
I even had video of part of his episode to show the Dr.

Once he got to the hosp he was Mr calm cool and collected. But they kept him and had a sitter to keep an eye on him. He did great, so well that the sitter was told she wasn't necessary any longer and left. Shortly thereafter, according to the head nurse, he had melt down.

I hate that he had that and at the same time glad so that they could see for themselves.

Today wasn't any better and not only was I the bad person, so was everyone else.
I felt like my presence was making things worse so I cut my visit with him short.
They will keep him for a couple of days to look for underlying issues like infection. But personally, I feel this may be progression of the disease.

I know they can't "fix" the problem, but I would like them to find some peace for my husband. I feel like he is suffering with his mind.

Worse, I feel like, if we can't find him some relief, I can't bring him home.

I feel blessed that I am at peace that I will have to make this decision, I have prayed for clear answers. I just find it hard to think we are at that point. 7 yrs went by so fast. 

 Mon Jan 26, Hubby's decline moving faster. He wasn't eating or drinking. The VA did a CT scan to see if a recent fall might have caused some repairable damage in his head. I was hoping for a brain injury, but that wasn't to be the case. Results showed nothing that jumped out as a reason for the violence. He continued to be combative and had to be restrained a few times. Meds were changed to see if we could lessen the hallucinations that were causing his great anxiety but nothing was working. Another down turn came with another catatonic episode that lasted the majority of the day then, like the last time he came out of it. 

Wed Jan 28, I walked into Hubby's room to ask the sitter how his night was. She informed me that Hubby had slept well, sitting on the side of his bed ate some breakfast (liquid diet) and was pleasant. What great news! He was resting when I walked in but when I started talking he opened his eyes and looked at me with a big smile. He was pleased to see me and wanted to come home. I was overjoyed, I let my heart run with the hope that it could work out. Had we found the key that worked? 

Then Hubby laid down and when he woke, he was agitated  and angry. My hope to bring him home was dashed.

I cry prayed. FYI sobbing snot prayers are not pretty but they are still effective.

That night I slept. The next morning, I woke with a peaceful yet determined resolve to get my husband to a facility closer to home. 

It became my mission, so as I encountered Hubby's Drs, I respectfully told them what I wanted the end result to be and invited them on board to make that happen for Hubby and for me. They did!

As of yesterday, Hubby was transported to a more local Hospice inpatient facility for 2 weeks. The original plan was for me to stay during the day and go home at night. I still had Hubby's brother I was caring for (YAY!) also and he would need to go to school. Yeah, those plans fell through once Hubby arrived at the facility. He had taken another down turn and I made the immediate decision I wasn't leaving him. I called Hubby's sister  and her husband and they were more than happy to care for BIL. 

I called the rest of the family and suggested they might want to come and see Hubby sooner than later. 

As of this evening they all have.

Wednesday Jan  29 Hubby was conversing and cracking jokes. As the evening wore on he became agitated and anxious.

Thursday Jan 30, before his transfer I called to see how his night went. I was told he had talked all night. When he arrived at the new facility, he was talking non stop but his sentences weren't making much sense, anxious and grabbing at imaginary things in the air and blankets. Thursday evening he became incoherent, he talked all night continuing to grab at air and blankets.
Today, Friday, Jan 31, after an entire night of chatter and anxiety he FINALLY went to sleep and slept peacefully. He isn't grabbing imaginary things from the air or blankets. But he also isn't responsive to anyone. 

Tonight I sit and listen to him sleeping, grateful that the prayer for his peace of mind and body are answered for now.

How am I? I told someone, I'm peaceful, a little tired and sometimes my own brain feels like mush. I have my moments but all in all I'm doing ok. I believe in the power of prayer. I just have to be accepting of his answer, yes, no or later to experience that peace.

I still hurt though, I hurt me and for our children. I feel like I'm holding it together but barely at times and wonder if I can be the support for them that they need. They are hurting too.

I'll leave on this though, just before Hubby became non responsive I leaned over him and asked if I could kiss him, he mouthed yes but didn't make an effort so I did, then I said "I love you" He responded, weakly, but I heard it, "I love you too."

Respite, the acquired acceptance

Respite is something I had to learn to do. I know that sounds funny but it's true.

Respite #3 was excitedly anticipated. I had made a heart connection to the people from an on line support group at. I wanted so much to meet them and this was my chance to do so.
You know, taking a cruise hasn't really been on my “things to do” list. I don't like to ride in boats and this body doesn't like to swim. But I figured I could suck it up about the boat and avoid the water by choice so I never gave it too much more thought and stayed focused on meeting my friends.

When that day finally arrived all I can say is that my cup of joy runneth over!! Squeals of joy escaped my mouth when my caregiver “sister” Trish, who blogs about caregiving for her brother at Robert's Sister, rounded the corner and we made that personal connection! Then one by one or two by two, caregivers were added to our joyful union and quite frankly I am surprised we weren't asked to tone it down or go to our rooms.
In hind site there may have been a suggestion to do just that when the waitress spilled water on me removing my focus from the group and the group and I stopped laughing all of maybe 5 seconds. (snicker) That was Nov, this is Jan I'm just now getting the hint. The entire experience seemed surreal to me in the best possible way.

There are challenges that come with respite.
First your head and heart need to work together to do it. Even if you can get your heart on board for a little while, that's so much better than nothing.
I've said before, there is nobody, nobody at all, even if you had a twin, that will care for your loved one the way you do. From personal attention to throwing away the trash. It just wont happen and I had to accept that. Since this was my third respite I found it much easier to accept, so after making all the arrangements for Hubby's care, I left feeling confidant I had done everything I could, now it was up to the others to fullfill their part.

Respite one I stayed close to home and the phone in case I was needed, I called every day to check on Hubby. You can read the daily blogs about that here.

Respite two ,I took 2 weeks away, I called all but 2 days this time.

And Respite three would find me in the middle of the ocean with limited contact and no way to get off a ship. I did buy an international calling plan for the travel with strict instructions to my my family that I was only to be contacted in emergency and I would call as I could. I had faith in what I had set up for Hubby's care and I stepped out on it.

And it was tested.

Our first night out at sea, my phone alerts me! I had a missed call? WHAT?!!! Don't panic, Kathy!
Then I immediately got a text message from oldest daughter explaining that Hubby had a very anxious day, had gotten upset and anxiety meds were going to be ordered for him. All was well but she wanted me to know because even though she was listed as contact, the Respite facility told her they tried to call me first. For a while my brain was in overdrive. Praying, praying, praying without ceasing. The situation was completely out of my hands and I knew there was nothing I could physically do. I had a choice though, I could continue to have faith that Hubby's needs were being met by the team I put in place and finish my respite OR I could fall apart and dwell on the fact I couldn't be there while Hubby's needs were being met by the team I put in place and finish the respite. No matter what I chose, I couldn't leave where I was so I went for option 1. And I am so glad I did.

So much has happened here lately that I don't have time to go into all the details other than to say I had a glorious time but the BEST time, was in the evenings, sitting around the dinner table with my friends, the people whom “get it”, laughing so hard there were, tears, snorts, spewing beverages, hurting sides and stomachs (I'm sure that part had nothing to do with the 3 desserts that were ordered by one caregiver but I wont mention any namesrichard as to not embarrass anyone) .

I can't imagine another respite without this group of people and the addition of those that didn't get to come but made it a point to meet up and say bon voyage. I would happily travel anywhere with them!