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.

Wednesday, February 12, 2014

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

Monday, February 10, 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

Sunday, February 2, 2014

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