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.

Friday, January 31, 2014

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."

Thursday, January 30, 2014

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!

Friday, January 24, 2014

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!