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.

Thursday, December 26, 2013


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,

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.

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

Wednesday, September 25, 2013

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.


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.

Tuesday, September 10, 2013

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!

Monday, September 9, 2013

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.

Friday, September 6, 2013

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.

Thursday, August 22, 2013

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
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