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.

It's Obvious I am NOT a Dr...

...but here's my take on Lewy Body Dementia.

Lewy Body dementia is a degenerative brain disease that deposits alpha synuclein plaques, also known as LewyBodies, in various places in the brain that destroy neurons causing impairment in thinking & coordination which leads to a whole lot of other issues.


I've tried to educate others as to what lewy is and what lewy does through this blog, hand out and spoken word. Yet when someone starts talking medical to me, I get lost in the language SO I began explaining it in terms I could understand.

Hubby has Lewy Body dementia. It is the second most common form of dementia after Alzheimer. It is a brain disease that has symptoms that look like Parkinsons where he shakes a lot, and some symptoms that look like Alzheimers when he has memory and/or thinking problems. One of the differences in Alzheimers and Lewy Body are the fluctuations lewy can do. You might even think the person is faking a problem because they seem so "normal" one time, "off" the next time, and back to "normal. 

So, imagine a highway.

 In alz, when the plaques and tangles interrupt the brain neurons trying to make a connection, the connection shuts down like a road block of quick sand. The neuron says, "Well we can't get past that" and it stops trying and eventually dies.

With Lewy, when the neurons hit a road block it keeps backing up and ramming to get through. The "off" happens while the neuron frantically tries to find a way through or around the neuron road block (lewy plaque) until it either accomplishes a detoured route, (normal) or has used up all of the options. Once it has no other options, it then dies. Probably from sheer exhaustion :/

The lewy delusions and hallucinations are like a house of mirrors and glass. In Hubby's case, most of the time he knows he is in the house of mirrors. There is more than one of certain things, things like me most of the time. Other things are distorted and confusing but, since he knows, he tells himself it's distortion or asks. This is a place I get to be also. I can see him but I can't get to him. There are occasions when he can't make the distinction. Those are the times he becomes convinced of what he sees and is sure he has found the way out. When it turns out not, he becomes agitated and angry.

I can't stop the progression. We've applied all of the slowing down we can and now our tires are worn to threads. I can only learn how to try make Hubby's life easier for him. It's a delicate balance and a LOT of trial and error in meds and action.
As easy as it can be to take his negative attitude and actions personally I MUST remind myself to keep my own self in check. I get testy and pouty and annoyed. When verbally pushed, I verbally push back. I'm not the perfect caregiver but I love deep, even if some days I don't like,  I do the best I can. I try not to wallow in the negative but I can get overwhelmed. I can shut down but I always regroup, stand up and continue going. I laugh and surround myself with others that laugh. I limit negative from outside sources. I offer support the way I want to receive it. I try to care for myself. So far both Hubby and I are doing as best we can. I contribute that to the very many prayers I say throughout the day. Prayers for him and for me. It's my prescription for our happiness.
Even though I'm not a Dr, I think it's working.

False Hope

Lewy Body dementia is peculiar in that it comes with fluctuations in cognition.
Don't believe me, check out this lbda link they have all the technical/medical info about lewy and then some.

Hubby has had plenty of fluctuations in cognition. They can last anywhere from a few moments to days. He can go from completely confused that he is in his own house to describing how we built it and back to wondering where we are all in the span of a few moments, or over the course of a few hrs or days.
We've had a huge positive fluctuation over the course of several weeks.
Hubby had even seemed "better". His mobility and memory were improved greatly. He could carry on a detailed conversation. He was remembering things even I had forgotten. He was walking without the use of any assistance. Long distances at that. Long, as in from the car to the inside of a local eating establishment and back out. 
We had the occasional "blips" but nothing that wasn't quickly recovered from. 

then, the bottom fell out. 

In my heart I knew it would be coming because that's what Lewy does, it tricks you. 
It tricked Hubby. He was so aware that he was feeling better. He was convinced he WAS getting better. He commented on how good he was doing and that he thought he was "going to beat this". It was heartbreaking to hear him talk like that because I was staying poised for the decline and unable to REALLY enjoy the moments of clarity. But, the one day I let my guard down we ended up in a physical altercation in the car. 
The day started out fine. We made plans to go to town. I got him shaved, something he still wasn't able to do and he dressed himself. 
Once we got into town, Hubby became angry at me because he had decided he was feeling well enough that he wanted to move out and wanted to see a lawyer. I refused to take him. Instead I turned the car around and headed home. Our day out turned into a fight for the keys and steering while we were driving. We are blessed that we live in a very small town with very little traffic. My anxiety went into overdrive and the fight over the keys resulted in Hubby getting a scratch injury from the key ring. We've been through this type of behavior before but it's been about 3 yrs. And to be honest, it feels like we had gone back in time 3 yrs but I did not want to relive those 3 years again. 
Over the last few days we have skipped ahead. We are back to angry and hurtful words.  
I guess I'll take the reality as opposed to the false hope.

Algo Para Pensar or Something to Think About

Today Hubby was watching a hispanic TV show.
That might not seem odd but neither of us speak spanish. :/
I couldn't understand anything that was said and could only pick out the times they laughed. Every now and then I recognized a word or two but the longer it was on, the more frustrated I felt and I wanted the channel changed.

This got me to thinking.
I wonder if this is how Hubby feels sometimes with language.
I wonder if this is what his world must be like when he can't understand what is happening around him or there is too much activity for his brain to sort out and respond to correctly.
It made me stop and think and I hope I remember this in the future when I find myself frustrated at him for not keeping up in a conversation or constantly asking huh.