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!

Caregiver Respite

I'm stuck.
I'm so stuck, I don't really know how deeply stuck I am.
So this is my attempt to dig out.
And it might have to come in small shovel fulls.


Respite was a very welcomed and much needed time last Nov.
Several months prior I had made arrangements to do the thing we warn our children not to do.
Never travel anywhere unfamiliar alone.
Never meet anyone from on line, and especially never go off with them alone.


But I felt like my heart already knew several of the members of my on line support group and I was so excited for the opportunity to meet them, how could I not at least try?
So I saved my pennies and cleaned off my credit card (learned a seriously hard life lesson about those so I never keep more debt than I can take care of right away) and as part of the group was able to get an awesome deal on an all inclusive cruise. WOOT!
I had never been on one before so I was anxious, but mostly about what to wear.


I called and scheduled respite, and you can read about the intake here .


Are you back? Ok, good. You read quickly :)


So, respite didn't go so smoothly for Hubby and it it started out bumpy for me but I knew I had made the best arrangements I could for him and I kept my mind focused on what I needed, time to regroup my heart and mind. Eye's on the prize, keep moving forward.


I knew Hubby was in a safe environment. I knew he would get proper care, not the care I would have provided or the one on one attention I provide him, but proper care non the less. I knew he would have a Hospice aide Mon - Fri of both weeks. I knew he would have his meds, I had made arrangements for him to have the conveniences of home ie TV, bed trapeze bar, drawer full of candy, our children promised to pop in for a visit. All I could do, besides staying there with him, and really, what good would the respite have done me if I had?, was being done.
This was Hubby's time. Time to be able to get away from me and interact with others. Time to get a break from my stress and attitude that I was having a hard time keeping reigned in.


And then it was my time. My time to step out of the lewy body dementia world of confusion. A luxury I have even if it's for a few minutes hiding in the bathroom or another part of the house. Something Hubby can not do of his own free will, ever.


Feeling confident I had done all I could for Hubby I made my escape for precious time with Oldest Daughter and Youngest Daughter. They both took a day off work to play hooky with me. We went shopping and had lunch and played a lunch game called, Order for the other person. That was interesting and fun besides good food choices. Oh we laughed and it was so much fun to do that!


Packing for Hubby was easy. I had made and saved a list for reference. Packing for my time was it's own issue. I had no idea what to bring so I packed my closet, then eliminated and repacked, weighed the case and repacked again with more removal. As I had to mix and match outfits with the approval of my clothing inspector, Youngest Daughter I wondered if I would remember what went with what, so, with my phone I took pics of the outfits, shoes and accessories for easy reference LOL!! Hey, it worked.


My travel included air flight. I love to fly but it had been years since I had, so I had to learn a few things. One of those was check in. Apparently you can do it on line now. Tickets can be printed. Baggage check in can be done on line too. And they charge per bag?! Good thing I repacked because there is an over weight charge too.
One of the fun things is you even get to see what seat you are assigned. Don't like your seat?, move it, for a fee for some seats. So I looked at all my options and length of travel time on one of the flights and decided, I was worth an upgrade! So I upgraded myself to first class. That's right, I'm a first class caregiver so why not travel like one! YEAH! That and the fact that a seat change to a window and a baggage fee was almost what a first class seat would have cost, so I took it.


Now you're probably saying to yourself, This isn't about caregiving, why is she writing this?
Ahh but it IS about caregiving.
You see, caregiving isn't only about the quality care we just give our loved ones. It's about the quality care we give ourselves so we CAN give quality care to our carees. We, the caregivers deserve to be treated with a little pampering every now and then. The day in and day out of caregiving can wear down a mind and body. Lewy Body dementia feels especially wearing so it felt good to have a me moment. Someone took care of me, offered me a beverage, a snack and pillow, whatever was available to make my trip more comfortable and convenient. Don't we do the same thing for our loved ones?


As I stepped off the plane, priority exiting, it was my time. Look out world, First Class Caregiver coming through!

*TMI ALERT** TMI ALERT*

*ALERT* BE ADVISED*
This will be WAY TMI unless you are a caregiver or have interest in caregiving and desire to learn more.

Don't say I didn't give you fair warning.

You can turn back now and nobody will feel harshly towards you about it.

Last chance!



Ok, I warned you,
Impaction.


Lewy Body comes with a constipation issue. Even though we have tried numerous relieving techniques the fact remains I can't force my loved one to take them on a daily basis and I won't change his diet to the extreme he is frustrated and angry more than he already is. Thus I supply him with his desire for whatever he wants, specifically candy and the consequences that come with it.


So,
We both learned a hard lesson on impaction.


We finally dug around until a solution was found and it all worked out in the end.
We'll know better next time, I hope.


Nuff said.

Respite Act 3

When I was a young girl I used to love to visit the local park. The playground had a merry go round there. Not the carousel type with the horses but the colorful one that had the rut all the way around it where we ran while holding on to get it to spin, then we would jump on for the ride.
If we were lucky we could get an adult or another person to spin it and all we had to do was hold on for the ride.
Learning how to ride without feeling sick or falling off, took practice.

As a self spinner you could the circle jump on and gently ride out the fun until it stopped.
When another person and their force took over, that could sometimes be another story.
The slow spinners allowed us to sit on the edge and we could bring it to a stop by putting a foot down on the ground, another reason for the rut around it.
The faster spinners left us with little no control so we learned how to ride. For me, it only took one fall off during a spin to learn what centrifugal force was. So to prevent being spun to the outside edge and off, I needed to hold on to the metal bar tightly.
I also learned the many ways that metal bar would be my riding friend. I could sit straddle of it. Arms and legs wrapped around it with a death grip. A little braver, laying down with head toward the center and a foothold on 2 of the bars and hands clutching the bars near my head. Sometimes I could let go.
Learning to stand came with it's own challenges but you learn to crouch and grip, then stand and grip, and eventually you find a center of balance and realize, you can move toward the center where you find the ride isn't so dizzying. There is where you can extend our arms to the sky and feel like you conquered the ride. Just don't let anyone or or anything distract you or you find yourself on your backside getting swung out to the edge. It's also there that you can extend an arm to assist another trying to make their way to the center.


This is my caregiver merry go round.


So it's been over a year since I had a chunk of respite time. Granted, I get an aide for 10 hrs a week. I can get a few errands run during that time and if I have any 'free' time I usually try to get in a workout at the gym I am a member of. Lately that hasn't happened though.


Hubby has been very, very needy. I have been “Honey!”ed so much that I suspect bees will begin to follow me around!
My lack of presence seems to set off some sort of internal distress. Even running the vacuum in another room feels like a luxury. So mainly I sit with him, play a computer game to escape from the reality and mentally shut out everything I don't have to contend with.
Caregiving is weighing on my heart and mind. Everything feels like its sliding to the edge of the merry go round being turned by life and some days I wonder, “Will I be able to hang on without falling off and getting hurt?”
I keep trying to maintain my balance as I work my way to the center. Clinging to Jesus with arms and legs wrapped and locked on. I know once I get there I can find some peace from the struggle as I stand with arms lifted and watching the world spin. It is also there I can reach out to others to help them reach the center and hopefully a center of balance.


One of the things that threw Hubby and myself of center was the start of Hospice. Don't get me wrong, I am VERY grateful for them and so happy to have them. It's just... I don't know.
Hospice started with Hubby a little over a month ago. He continues to deteriorate physically but the odd thing is cognitively he seems 'better' (?). Oriented to place and person. Ahhh but “You aren't fooling me Lewy, I've seen your tricks before and I'm not falling for them!” So even though Hubby seems more his old self trying to communicate (very s l o ... what?), I maintain a distance in my mind and heart so neither will take a hit when the decline slams us again.


Now it's time for respite and I had scheduled 2 weeks.
Hubby's anxiety shot up as respite neared. I waited a while before saying anything to him for that reason and as the days got closer the anxiety increased. His behaviors worsened and his attitude towards me worsened and honestly I prayed SO HARD for the Lord to keep my mouth closed. Eyes straight ahead and just get through one day at a time. For a wile I didn't know if he would even go as he stated he would not. He tried to pick a fight with me the day before we were to leave and spoke very mean, vulgar and hateful things. I promise it took a great deal of emotional strength to remain calm and not respond. I prayed for a steal vault around my heart and a clamp on my mouth. I forgot to ask for protection of my mind because he got a few shots in that made me think, I would be glad when he was gone. Truth.
The morning came and although he was reluctant he was at least cooperative in getting ready. I allowed plenty of time and never rushed him to do anything. I packed almost everything the night before. One mistake I made was doing the packing in our bedroom. I could tell he was getting upset as I started gathering his clothes, so I stopped, waited for him to need to use the bathroom and while he was occupied, moved everything to another room and packed a little at a time until I finished.


This particular respite time I wanted him to try a stay at the VA contracted nursing facility instead of the VA Hosp. My reasons, all logical to me, were, since he had already expressed his dislike of the VA hosp I thought a different place and perhaps atmosphere would satisfy him more. There would be more people, men and women. More visitors in and out. He might be more engaging with them and actually better emotionally. He would be closer, 45 miles instead of 65. The drive is better and I don't have to fight big city traffic. Side note, I was not familiar with the town we were going to so I pulled out my map but Hubby had been there and through there many times in his car dealing business days so he told me how to get there :) Other reasons I chose this facility was he can take his Hospice services with him so if he needs anything at all, supplies, meds, they will provide it. Also the thought that IF I would ever need a permanent place for him, this is the facility I would use so I wanted us both to have some feel for it.


The facility is lovely from the outside. It looks like a remodel was done to it at some point and it was decorated for the fall. The inside was very clean and the front gathering area was large and homey. Residents were watching TV, conversing or playing dominoes with one another or just sitting. One item of interest was a very large display that had actual birds in it. SO pretty.

The room Hubby is in is roomy. He shares with another gentleman. A very nice and quiet man. This is much better to Hubby's liking compared to the noisey one he shared a room with at the VA hospital. The rooms are older though, painted concrete block walls and connecting rooms share a half bath. So 4 residents share a sink and a toilet. Immediately there was an issue with that. The bathroom was tiny and a wheelchair wouldn't even get wedged in the door. There were no grab bars and the toilet wasn't the raised type. So Hubby was offered a bedside toilet.
Another thing about the room is, compared to the VA Hosp which is completely furnished, this respite room is more like a dorm room. Except for a bed, completely EMPTY! They were kind enough to scramble and bring him a night stand. They rustled up a rolling bedside table too. The gentleman he shares with said Hubby was more than welcome to watch TV with him. The rooms don't provide TVs. So day one of my respite was spent getting Hubby settled in and then making a list of items he might need that I hadn't thought about or making sure he was stocked up. Day 2 was spent gathering those items and taking them to Hubby. ahhh Respite, so glad I get a break from caregiving! LOL!!


I'm not worried about Hubby per se, I do hope he engages with the others. Unless his Lewy Body Dementia lets up though, I doubt he will. Lewy put him on the downward slide. Although Hubby has been more vocal at times, his mobility is shot and for the last few days had to be total assist with transfers. He also gets hit with unresponsive or barely responsive. I do not contribute this to medication. It fluctuates too much. Another Lewy Body symptom.


One last thing to share, Hubby is very convinced that he will pass away while he is in respite. I asked him to wait until it was over. He agreed so I'm holding him to that ;-) but the best thing was his mushy sentimentality and expression of love for me.
As we were getting prepared to leave for respite, Hubby said “Well, if I don't see you anymore, it was nice knowing you.”
LOL!!!! I'll take what I can get :D

Surprise Reaction

No matter how much we prepare for something, ask for, anticipate and expect, some things we just are not ready for when it arrives.

Hospice 

It's a wonderful organization. They have been involved in my life more than once so I am familiar with them and appreciate what they do and how they do it. I always knew that when end of life care came for Hubby I would be glad to have their services and I have no doubts that I will be glad now that Hubby has finally qualified for it.

But WAIT!!

How come the news I was waiting for feels so bad? Why was this distressing? I should be relieved so why is this different than when my grandmother, mother and friends we cared for had them. We were glad to have Hospice on board then. Relieved actually that when we needed something, Hospice was a phone call away. Helpful and compassionate. Heck, Hubby and I even volunteered for our local Hospice. I expect nothing different in the level of care and attention, education and support. And yet, the tears came after the notification and they caught me off guard. stupid tears.

I've tried so hard to maintain a level of dignity for Hubby and the addition of Hospice will ensure I can continue to do that for the man who is piece by piece losing himself. Another piece gone is his ability to take his meds most of the time. I have started to hand feed them to him. A sip of water, pills, another sip of water. He has many times asked me what he should do first so I usually talk him trough by holding the cup and straw, encouraging a drink, inserting the pills and offering another drink. I don't have to do this every time but the frequency is increasing.

He is also experiencing more anxiety, most of the time upon waking from a dream he can't shake. He is always worried something is wrong, no matter how many times I assure him everything is fine. I can't even go to the bathroom without him opening his eyes if he suspects movement in the room, that usually comes in the form of the dogs jumping off his bed when I get up. Even the dogs want to know where I'm going and if everything is ok. One day I almost expect to find Hubby along with the dogs, lying in front of the bathroom door awaiting my exit :)

Yep, everything is fine as long as the tears stay away.

Whatcha doin?

I think I may need to invest in a security system. Not to keep people out, but to keep a certain someone in. This morning at 5AM I found Hubby outside at the end of the walkway. Our dog, Lady aka Elvis to Hubby since he can never remember her name, woke me up whining. Thank goodness for Lady.
No telling how long he was out there but he was pleasantly surprised to see me at "these people's house". I seated him in the wheelchair and we stayed outside close to 15 mins just talking about "these people's house" looks like ours including the old toolbox on the porch. And "will "these people care if we go inside?" I assured his nobody would care. Best part, I wasn't the least bit cranky! It was a miracle morning :D

This is the first time he has actually left the house and I'm most surprised given the weakness he has and the mobility issues. I would have expected this at the start of his Lewy Body dementia journey, not so far into it.

If you've been keeping up you know this is the flip side of the last few days. It's emotionally exhausting. Now I'm concerned about him getting outside and getting hurt without me knowing. UGH! Sonny Boy is giving me some ideas for our home. I have questions and he has suggestions.

Years ago, when we first realized we needed to care for his mother, she was dx with dementia but we knew little to nothing about it. She too made efforts to leave the home and was successful a few times, not far just at the door, before we bought door alarms to alert us she was trying to open the door. Her mobility was fairly good though, she didn't need support assistances to walk and although she was slow she could at times be fast as lightning! Those little door alarms were great.

In other news. Not long after Hubby's diagnosis, Lewy Body had taken my starched and pressed and perfectly quaffed Hubby and stripped him of his desire to maintain his spit polished appearance.  The home dress code is now just underclothing and socks. He is comfy like that and I don't force him to dress.
Yes, there is other news but you need the background for it.
Yesterday Hubby was taking his usual bathroom time, meaning, he has no concept of time so he can just stay in the bathroom for very long stretches of time doing nothing. Eventually I go in to assist with whatever he needs help with. Sometimes just directions on how to get out.
Back to yesterday, I walked in to see what Hubby might need and proceeded to help when he informed me had had just been to someones house. I didn't disagree with him, I just said, "Oh, yeah?" as I helped him get his underclothes on. Apparently, in his mind he travels to lots of places. This could explain his confusion about place. And as I was helping he said "You know, I go to a lot of places without any pants on."
It was everything I had in me to keep from falling over in laughter so I just smiled really big and said, "It's ok. Nobody cares what your wearing." Then I helped him into his wheelchair and settled him in bed.
I sure do love my Hubby!

Lewy Body Days

4 days of bed ridden , 3 days no food, 2 days no water to speak of. Cognition shot, mobility out the window, I prayed over Hubby, I cried over Hubby. I held him a lot and kissed him. I wondered if it was his ending. I wanted to make sure he knew how much he was loved. I asked for prayers and strength to face what was ahead. The strength and calm came. We rested.

Then this morning at 3am, youngest daughter found Hubby standing in the kitchen. He didn't know where he was or how to get back to our bedroom so she came and woke me. I got him settled back in bed and woke at 7, so did he. He sat up on the side of his bed, he ordered something to eat. I tried to get him to choose something lighter on his stomach than a sausage sandwich but he was having no part of it so I made one. He ate it all and didn't even share with the dogs!

Today he's had water, tea, cola, juice. Today he is walking his normal pull himself along. Today he got cranky with me when I offered him his afternoon meds. He didn't need no meds right then. 2 hrs later he fussed at me because he needed them and I hadn't given him any all day. Today he annoyed me and in some way I was glad. What a difference Lewy can make in a day!

I learned something through this experience. I'm not as organized for supplies handy as I feel like I need to be. I found myself flitting around to collect the items I needed for Hubby's care. Tomorrow I'll reorganize and make a one stop location for things we need, gloves, pull ups, bed pads, sheets, baby wipes, trash bags, etc. All of these we have but they were in various places throughout the house. I need this to be more efficient.

Another issue that developed was I noticed the start of a pressure sore on Hubby's heel. I try so hard to watch for these things and ward off potential problems so when I saw it I tried to beat myself up with some guilt. I was reminded that these things can happen no matter how much I check. I found it very early and am taking steps to find relief for it. I have no reason to feel guilty so I'm not going to. I have a call in to the Dr and someone was supposed to call me back with a solution or suggestion. I'll call again tomorrow. Until then I have his feet elevated off the mattress and am putting solarcaine on it. A store pharmacist said it was for sunburn but had aloe and an anesthetic in it to help with pain. I bought a bottle.

So there we were and here we are, and I have no clue where that is.

Prepared, But Not Ready

Hubby started his new pain medicine and I was expecting a hit in cognition and mobility. They both came.
I am glad I read a lot about Lewy Body dementia, have joined support groups and read the stories, gotten advise and feedback from those ahead on this journey. It has made the walk a little easier for me so I can make the walk a little more comfortable for Hubby.
At times I get a little overwhelmed by the grief and anger of caregivers. I retreat from everything. I wonder how can I help? I understand their pain and sadness. But I also get encouraged and supported by others. I appreciate their words. I try to be a supporter and encourager. Today however I may not be a very good one.

I had Hubby evaluated for Hospice again. I did that about a yr and a half ago. You can read it here. 
Again he didn't qualify because he could still transfer on his own, had limited walking and can put food in his own mouth. The dementia criteria is pathetic!

The last few days I'm struggling with my emotions.
I sit with Hubby as he sleeps. The new meds have helped cap his pain and I can tell by his facial expressions, or lack of, that he is resting, for that I am grateful. But oh the price he paid for it. As of today he is 2 days bedfast. No more pulling himself along the furniture to get where he wants to go. He must be physically assisted to transfer him from bed to wheelchair when he is encouraged to go to the bathroom and or get cleaned up. His appetite has decreased to maybe a couple of bites of something but for the most part, he doesn't want anything even when I bring it anyway. Bowls of ice cream are left to melt, sandwiches are left to dry out, candy and snack foods untouched. Although I did find a couple of wrapped pieces placed under his pillow.
A precious friend brought us fresh veggies from her garden and he was so pleased to have them but he only ate a small portion before giving up. I've made shakes and offered softer foods but they too are left unfinished or declined. It's hard to watch this.
I do however push fluids, fluids , fluids, water, tea, juice lemonade.
I think I'll try a few fruit slushies too, now that I'm typing this out.

Cognition took a terrible beating. The hallucinations have him confused but not upset. Where he would normally not acknowledge them as real or ask about them if he struggled with it, he asked one who they were so I can tell he is having a more difficult time distinguishing. Again he is accepting my word that I do not see what he does so that's a relief for us both. Verbally at times he makes no sense at all and a word spoken gets looped in his brain and he uses it in place of something else he wants to say. It's hard to keep up so some times I just wing it. It doesn't happen all day because he sleeps more than ever. That doesn't seem possible so maybe I should say he sleeps differently now. Before he would sleep and turn over or rise to go to the bathroom and back to sleeping, now, he stays put, in one place, never moving.
This raised my red flags about developing pressure sores. I have made a call to the VA to see if he is eligible to receive an alternating pressure pad and pump for his bed. I will keep a VERY close eye on him to ward off this trouble! We have him out of pain, I want to make sure it stays that way even if I have to order one myself.

My mind has been going over the list of coulds, needs and things that will.
This is hard to write but I promised I would be truthful about our lives in this blog so I don't sugar coat.
I know Hubby is dying, there I said it... I said it :(

My mind and prayers are stuck on our children. I keep praying for their peace and strength as well as my own. I pray daily for Hubby to always feel loved and safe and for his passing to be peaceful.
Hubby and I have talked extensively in the past about how we wish to live out our last days. We are both in agreement on how we want things.
Comfort care. No life saving measures, no tubes, no hospitals, just whatever it needs to make us comfortable as we transition from this life to our eternal one. Talking about this difficult subject was fairly easy for us. We have a Hope built on our belief in Jesus and we accept that life here ends for us all and we move into an eternal one. We agreed we wanted cremation and we agreed we wanted no services just a gathering of family members that wished to congregate over a meal somewhere. 
Arrangements for these things are all in place for Hubby. An advanced directive and a physician signed DNR. Burial policy paid in full. A list of people to call when the time comes and I even went so far as to write out the obit. I heard you gasp a little! It's something that can't be avoided and I wanted to do it with a clear head and not in a moment of emotional distress. So I think we are prepared, but oh, I am so not ready. Not ready at all.

What have I done?

In my mind, I've put myself in seclusion from lewy.
Seclusion from the blog. Seclusion from caregiving groups.
I've separated myself to think, ponder, to pray. I may have to live with it but I don't always want to think about it so I am giving it the cold shoulder. The silent treatment.
For now, this seems to be my self defense for protecting my minds peace as I sort through things. Yet even though I'm ignoring all things lewy, my mind is always churning about ways to make things easier for Hubby. I don't think that can be classified as denial when it's at the front of my thoughts all the time.

One of the big issues Hubby has had for quite a while has been chronic back pain.
Poor guys complains all the time. Those compression fractures he suffered a few months back didn't help things either and we have tried to find ways to alleviate the pain. At the least I would like to find a way to cap it to a certain level since it seems impossible to be rid of completely.
The, what feels like, never ending complaining finally weighed heavily enough on me that I vowed to do whatever we could at any speed we needed to, to get rid of Hubby's pain.
I made an appointment with Hubby's Primary Care Physician even though we weren't scheduled. The VA schedules everything and we are supposed to sit and wait. I chose to jump track. At this appointment we again discussed Hubby's pain and chose to take a more aggressive approach caring for it. In the past I have always dragged my feet with anything new for fear of side effects worsening lewy. I suppose I realize that lewy is going to stay it's course no matter what we do or how fast or slow we do it. Still, in the back of my mind I ask "Am I doing the right thing?"

Another avenue for relief was a Chiropractor. In the past Hubby has seen a chiropractor and feeling certain that his back had healed enough I made another appointment for an adjustment for Hubby. I guess you could say I am trying to adjust his attitude ;-)
If you ask Hubby he would probably tell you I need mine adjusted too. :0

After the intake which included the info about his recent falls and compression fractures and the lesson on Lewy Body; What? You thought I wouldn't? The plan of action was neck xrays and start there first. I got to see the xray and it was such a surprise to me when I noticed Hubby had 5, yes, FIVE! healed compression fractures in his neck most likely from his falls he had taken over the last several months. 
When I had taken Hubby to the ER nobody ever x-rayed his neck when he was seen, only his hip and back. After his last couple of falls his main complaint was his lower back so I never thought about his head or neck unless he had hit his head, which he hadn't, but just a hard sitting jolt can be enough to compress your vertebrae in your neck. Now I know to ask for head/neck x-rays too if we ever need another ER visit.

Dr Chiro adjusted Hubby and believe it or not, Hubby said he felt better afterward! YAY! 
The new meds, morphine, came in and Hubby started taking them. I watch him like a hawk but I don't really know what I'm watching for anymore. He's sleepier now, if that seems possible. Sometimes when he wakes he looks like he's in another world. I guess this is odd because I've always been included in this other world of his, now I'm just a stranger looking in. Maybe this is just an adjustment period for the meds, maybe it will be our new normal. Only God knows that. 
I ask myself, "What have I done?" 
It is then I must listen to my inner peace repeating 2 Timothy 1:7 For God hath not given us the spirit of fear, but of power and of love and of a sound mind. And reminding me, "You did everything you could to give Hubby the best quality of life you could. You have sought out ways to release him from the pain and are taking steps to do so, You love him even when he seems unlovable. You're doing the best you can with what you have and know." 
That's what I have done.

I guess I don't need to tell you about the cognition issues since we all know what direction they are going in also, I will share some fun with you though! 

Hubby is always wanting to "go" someplace and some of the time we actually do venture out in the late afternoons. One day Hubby decided he wanted a steak for supper. I'm not going to complain about that so we stopped at Chili's.
Sure enough they prepared an excellent ribeye. So tender and juicy! mmmm
anyway,
I scarf mine down like I'll never eat again and Hubby eats his mashed potatoes.
Seriously, there's a steak sitting there, I even cut it up for him.
I ask if his steak is good, he says "Very", we brag to the waiter and manager.
The bill comes, $16 each! I gulp and pay it, ask for a to go box for Hubby.
We get home and he asks me if I want the steak. I think about it but decline.
Willpower, go me!
The next thing I know, he's feeding a $16 steak to the DOGS!!!!! 
At least he asked me first. ROFLOL!!!!

On another occasion Hubby asked me "Who do you work for?"
I answered, I don't work for anyone.
He then asks "How do you make it?"
Apparently my answer of "Honey, I'm married to you" was hilarious because he busted out laughing! LOL!

And again, In an effort to figure out who I am, Hubby just made me show proof of identification, from the V.A. My drivers license wasn't good enough for him. Good thing I had my medical card o_O 
 

Constricted

Ever so slowly I have felt the tightness of grief.
I wasn't blaming it on depression. I've been there before.
Feeling of sadness and hopelessness. Brain fog. That lost alone feeling.
In my mind, this is depression.

No this is something different to that.
Then a situation outside of caregiving tipped the scale and now I feel like I'm in the stranglehold of anger!
So here goes.

Over the last few months Hubby has had good and bad days. More bad than good.
Lots of cognition issues, LOTS of his own anger issues we have tried to deal with and cap. Still no solution to that though.
Mobility has declined and I explained to his Dr at a recent appointment that Hubby wanders but don't get it in your mind that he stands up and walks across the floor with no issue. He clutches everything as he makes those tiny little shuffle steps and pulls himself along all the furnishings. Many times, almost every actually, he will get where he wants and then he "Honey"s me to come and rescue him with the wheelchair for a ride back to our room.
He still suffers with his back pain and his neck has decided to flare up and join the party.
His headaches that he used to complain about on a daily bases associated with his PTSD issues have returned.
Lack of movement, muscle atrophy and neurologic stiffness associated with the parkinsons type symptoms.
Falling is still at high risk. Hubby has already suffered 2 compound spinal fractures. I don't know how to make him understand he needs assistance with walking. He is still a very proud man and he would rather crawl where he wants to be than have anyone (besides me when he needs me) help him. His words.
He is so dependent on me and my presence. I get "Honey"d so often I may become a diabetic! Even Booger the dog gets up and moves toward the door when he hears it.

So now to the constriction.
I'm angry because... (random order)

• -Hubby refuses help from anyone but me.
• -I refuse help unless I feel like I'm in a bind.
• -I have to make ALL the decisions.
• -Our aide took another position and we will have a new one probably with new days or hours.
• -Hubby forgot who our baby daughter is, even though he sees her every day.
• -I get "Honey"d
• -Hubby stays up all night mostly raiding the fridge and drinking from the milk carton or rattling candy wrappers!
• -I'm tired.
• -The grass grows
• -The dogs need attention. Why can't they be like cats?
• -Hubby wants to go places EVERY night after the day has just about ended and I am tired, it's late and only a couple hrs of daylight left. Yet he has NO idea where he wants to go when I ask him. He asks me where I want to go. I don't want to go. I want to stay home! Then he gets upset at me for keeping him prisoner.
• -There are a limited number of places we can actually go that are handicapped accessible and even fewer places that have family style bathrooms. 
• -We never go anyplace.
• -Hubby is STILL on the I'm stealing his money delusion. On the way home from a recent Dr appt he started in. I started loudly head singing, Mary Had a Little Lamb! I wish I had chosen a different song :/
• -Hubby insists he will have a talk with his Dr about things and insist that I make appointments for TODAY, umm have you EVER tried to get in to see a VA Dr same day? It doesn't happen. yet when we saw the Dr, he didn't say anything.
• -Hubby can't hear or comprehend what I'm saying so I have to repeat myself! Hubby can't hear or comprehend what I'm saying so I have to repeat myself! HUBBY CAN'T HEAR OR COMPREHEND WHAT I'M SAYING SO I HAVE TO REPEAT MYSELF!
• -Hubby accuses me of yelling at him.  I'M NOT YELLING! Ok maybe a little.
• -I use too many words to talk to Hubby.
• -I have to be a thesaurus to talk to Hubby.
• -I don't want to talk to Hubby.
• -I can't talk to Hubby.
• -I don't work out and exercise like I used to and want to.
• -Hubby lost weight since his last nutrition appt. 8 lbs in 4 months and no changes in diet other than the ice cream addition since the hot weather settled in.
• -I had to talk to the nutritionist about keeping Hubby's weight documented for the addition of Hospice services if it continues to decline. Failure to thrive will qualify Hubby for those services.
• -Hubby believes he can move out on his own.
• -Sometimes I wish he would.
• -I can not come to grips with placement. I can't think about it. I've shut down.
• -I'm angry because, I'm angry.

Oh this list could get so long but you see what my mind is dealing with. I think it's time to make some steps to see my own Dr and address these issues.  I don't want to let my joy be squelched by anger. And mostly I don't want to squelch my witness of Gods great love. Getting trapped in anger is scary for everyone!

So since I've whined all over this page and honestly, just getting that out seemed to help. I actually forgot some of the things I was going to list! I want to end with something positive.

A few years ago I built a small deck off the side of our home. Hubby and I could sit outside on the swing and enjoy the weather when it was enjoyable and he felt like it. Just a few times for him though.














This year I hired a crew to put a roof on it. maybe Hubby would want to come out more. I felt it best to hire professionals for the roof due to an electrical issue. They did an AWESOME job! Now Hubby and I can sit outside, heat permitting, and he (we) can be protected from the elements.

 I had also been thinking of building a ramp off the back of the deck. I'd like to connect this side deck with the one in the background of the other picture. I built that deck for our youngest daughters wedding 4 yrs ago. At some point I want to put a gazebo roof on it. That's a BIG dream for me right now so I'll stick with the ramp since I know I can do that.

And I found a surprise under my deck when I was building the ramp. Remember the kitten my sister in law sent me? If you don't, you can read that here.
We named her Shadow. She is a very affectionate and loving cat. Some days she gets run of the house. We like her. And apparently another cat liked her too because I found 3 kittens under my deck that belong to her! Note to self, shadow needs a vet appt.
My goodness they are already big and how I had NO idea she had them is beyond me. They are the most playful, friendly and loving things. You would never know they had no human contact before.
2 solid blacks, 1 tortoiseshell. All 3 have blue eyes and one of the black ones has a stumpy tail. From the feel of it, the tail never elongated. It has a tip but it's crooked and adorable. It's my favorite and it likes me as well. Booger the dog thinks I got him toys to play with.

 And most of all I want to say Thank You!
I have received some of the sweetest and most supportive comments from you. Thank you for your concerns and encouragement. Thank you for reaching across the near and far miles with your support. I want you to know that I have you all on my daily prayer list. For those I have no name for, God knows who you are.
I pray he blesses you all with His Peace and Comfort. Thank You Thank You!! This journey would be SOOOOO much harder without your support. I only hope that I can or have offer/ed you the same in return.

June 28 2013

Today didn't go very well. Much like many of the days and nights lately.
We are struggling.
I miss my husband even though he is sitting in the same room with me.

Rude Awakening

Odd how our emotions can switch from one extreme to another.
The other morning Hubby took a really hard fall from the bed hitting the bedside table, busted his lip open, scraped his nose, eye, chin, knee. Blood everywhere. ewwwww
And all before I even had a cup of coffee!

I got him off the floor and into the bathroom so I could tend to him. He wouldn't cooperate and my frustration, anxiety and BP started rising I'm sure.
After finally assessing his injuries as non emergency I got him cleaned and re settled in the bedroom. Poor guy looks terrible!
I walk into the bathroom to clean it and hear him tell the dog,
"Did you see Daddy's face? People are gonna think I was drinking and got in a fight and didn't win."
Oh sheesh! LOL!!!

 Our reality is that the declines in Hubby have been coming slow and steady but coming non the less and coming much more frequently that making adjustments to any new normals feel out of reach.

Essentials for packing

LOTS of confusion, 
LOTS of repetition, 
LOTS of hallucination, 
LOTS of feeling displaced and wanting to leave, LOTS of conversations that seem to make no sense to anyone but Hubby and at times not even to him only leaving him frustrated. 
I even found a collection of items Hubby had gathered for packing so he could leave. Smart choices on his part as they were necessary items, well I don't know about my bottle of perfume. 
But I continue to pray for peace of mind, heart and spirit and to look for the humor in the confusion because I don't know any other way to deal with the sadness of the situation.

I haven't blogged much as we seemed to be coasting along with little to nothing to talk about. Not many humorous moments to share either, bummer. 
I did a couple of DIY's with PVC I will happily share. 
Hubby has chosen to sleep in our bed at nights now. There are no rails on that bed so I made some. $15 worth of PVC and so far so good. I am thinking I may have made it a little long but that's an easy fix. I used the hospital bed rails as a pattern but had to make the pvc rails taller for our own bedside.

During the day Hubby sleeps in his hospital bed. He can see outside his window during the day so I wanted to give him some aromatherapy at his window. I built a PVC stand, window high, and set a planter of lavender in it. Now when the lavender blooms Hubby will have a soothing aroma as he gets some fresh air and watches his birds! It was an inexpensive and fun project to do too.

I do have a couple moments AND I want to share some news about a trial that researchers at Georgetown University Medical Center are doing. A small dose of an already approved chemo drug that might help reduce or get rid of some plaques in the early stages of people with Lewy Body Dementia. According to the researchers "(The Study) offers a unique and exciting strategy to treat neurodegenerative diseases that feature abnormal buildup of proteins in Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others."
I will let you read for yourself here.  
I don't normally get too excited in all the news of "might" but this one had my attention. And although I believe it is too late for Hubby to receive the best benefits, it might help someone else just starting.
For anyone interested in joining the trial registry, here is Dr. Turner's email address:
rst36@georgetown.edu

Now on to what IS.
When Hubby isn't driving me up a tree with the never ending looping questions, he is cracking me up with his confusion and hallucinations. 
More cracking up than driving up the tree.
He asked me if we changed hands since he has been here.
I asked what he meant by that and he said, "Have they got a new manager?" 
Hubby thinks he is in a VA Home and I am the caregiver so again, I explained that this was OUR home, we are the people that live here and it belongs to us, to which he replied "Oh No! I'm not going to be the manager. I'm not going to manage all you women!"


And my favorite - One night, Hubby was sitting on his bed looking at me and said, "You know, I love you. 
I don't know why but I'm glad I do." 
Me too Hubby, me too!

Oh His Aching Back And My Aching Head

Poor Hubby. He took another fall 2 weeks ago, had another back x ray and a week later we finally received the results and only after I called  4 straight days in a row. I didn't have to stage a sit in either! The last time I finally went to the Dr office and sat in the waiting room until someone spoke to me. Progress! ;-)
This makes the second compression fracture from falls this year. The first in Jan.Hubby received a steroid shot and some muscle relaxers. This time I learned something I did not know. I asked if he could have another shot but was cautioned against it because, this is what I learned, steroids will weaken the bones, and since he has already had two fractures from 2 falls he didn't want to risk more bone weakness. He did prescribe the muscle relaxer again.

The last few days have been a bit trying with Hubby's back pain. Hubby finally managed to go to his eye Dr appt. we had to cancel a few times before due to various dementia related issues and once weather. It's so difficult to get into that clinic and I just about have to accept whatever appt time they give me. I was NOT looking forward to the hr drive to the VA but more than that, I was not looking forward to the drive home that would come come during rush hr traffic, or more like rush hrs!

Hubby has complained with eye problems for quite a while. His glasses weren't worth anything and he couldn't see. He complained enough that I finally got tired of hearing how slow the VA was, I took him to an outside eye Dr and paid out the nose to get him new glasses and the frames he wanted. Funny thing though, they are almost an identical prescription to the ones he already had, and when he took the eye test wearing the new glasses, he passed so well that even I was amazed. But Lewy took over and convinced Hubby that the glasses were worthless. He refused to wear them put on the old glasses and decided they were perfect. sigh

I know that Hubby has very mild glaucoma. He has drops he uses for it and when we attended the Dr appt the eye pressure had gone down some. Eye Dr suggested 3 options. One was a laser procedure, one was the drops and another was wait and watch. I suggested that the laser option may not be a very good choice because Hubby had the tremor that was quite pronounced and getting him still enough might be a problem. Since I don't know much to anything about lasers, my concern was that Hubby would shake and they would burn a hole through the back of his head. Perhaps I should have waited before speaking because Hubby, who started the day out having a testy morning anyway, became a jerk (no pun intended) and started gruffly telling eye Dr that I was opposed to anything he wanted to do because I was afraid they would let him drive again.
WHAT?!!!
He continued to say I wouldn't let him do anything because I was in charge and I liked it.

Eye Dr just listened and then explained how the laser procedure was fairly simple and he felt confident that he could do it on Hubby. He also said the procedure wasn't a sure thing and drops might still be a necessity but he was happy and willing to give it a try.
I asked Hubby what he thought, he wanted the procedure, I said, lets do it. I was annoyed enough with Hubby that I almost didn't care if they burned a hole all the way through his head and out the back of it. So they did the procedure in less than 5 mins and we walked out 3 hrs after the initial appointment time, with drops and a return appointment to do the other eye. Oh and no holes through the back of his head that I could see.

Before we left the facility Hubby made a pit stop. I have decided that this facility needs a family friendly bathroom. I couldn't accompany Hubby inside so I waited for him out in the hallway. Still annoyed at Hubby's attitude and anxious about the drive home at that time of day I didn't even notice when he walked out, which is actually translated as clutching everything in sight and scooting his feet, and he was not wearing his glasses. It wasn't until we were several miles down the road when he asked me about them. I scoured my purse 3 times eventually emptying it in my lap only to come up empty handed for glasses.UGH! But there was no way I was turning around and going back. I fought the stop and go traffic for about 15 miles and was determined it was free sailing for home when we escaped it. Besides, we had to go back in a week.
As late as it was, as anxious as I was, and as testy as Hubby was, I made an executive decision to stop for a take home meal. The weather here had turned cold. It's May and we had to wear warm jackets to hos Dr appointment and run the heater in the car, so instead of sitting at the drive thru I told Hubby I was going inside. I asked him if he wanted to go in with me or sit in the car, He said, "We'll sit in the car." I laughed, by now I was settled down a little, and asked who "we" were. He said the guys in the back seat.
I turned to see.
YES, I KNOW I KNOW!!! But it was a moment, ya know?
I asked him if he really saw people in the back seat and he said yes so I said well you guys wait here and I'll be right back.

We made our final drive home and got settled in the safety of our room.
Youngest daughter had a brilliant idea to call the facility and ask for the lost and found! She's so smart, I think I will keep her!
I called but had no luck getting through over the weekend.

I also had no luck getting through to Hubby over much of the weekend. He was just generally out of it and confused. By the time Monday rolled around things for Hubby weren't much better. A "No" from the lost and found dept didn't help either. I do not contribute his issues specifically with the muscle relaxers. The last time he took them we did not have these issues and he was actually feeling so much better he thought he was getting better. You can read about the False Hope here.

I contribute the issues specifically to Lewy body Dementia.
Just yesterday as I was drinking my morning coffee and catching up on my FB, or more specifically deleting the unnecessary "middle school drama" from it that does not benefit me or my emotional self care. He was having a REM sleep dream. I could tell he was engaged in an argument with someone and he nearly threw himself out of bed to fight them. I gently woke him up before he took a fall. He roused, changed positions then sat up. I walked out of the room and when I returned he told me he had been out of town, bought a truck and got into a fight with some guy there.
I could tell he was serious about by the way he spoke about it. He then asked me where we were, "We are at home" I answered. Then he asked me if his truck was out there. I told him we didn't have a truck and he got mad at me, furrowed his brow and said "BULL!" Still upset by it later he asked his aide to tell me he wanted  the phone number to the place he bought the truck. I was busy getting ready for a dentist appointment so I didn't answer him right away and scooted out the door. By the time I had returned he had forgotten the truck but was upset I was gone too long for him. I gave him the rundown of where I was but it didn't seem to help. He stayed in that mood for a while and later admitted he was jealous and afraid I would leave him. I don't know where all that came from but I assured him that I had no intentions of leaving him. I hugged him tight, offered him cake and ice cream which he happily accepted and all was right with the world again, for the moment.