Disclaimer

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.

Monday, February 10, 2014

This week is not for the weak

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

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

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

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

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

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

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

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

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

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



Sunday, February 2, 2014

Morning, Sunshine, or not

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

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

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

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

I've been saying mine since 2007
 

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!

Thursday, December 26, 2013

*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.

Wednesday, November 6, 2013

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