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, October 18, 2012

Beginnings and Endings

It was Oct 18 2007
I don't remember the weather but I do remember the feeling that someone had removed all the air from my lungs and I couldn't breathe. This was the day we received Hubby's official diagnosis of Lewy Body Dementia.
We were given 2 probables to narrow down from because there is no test for Lewy Body so it's a process of elimination. I had an idea of what the Neuro was thinking. I had researched anything I could find. I was preparing for it. Hubby didn't want to know, he didn't care and spoke little to nothing about it. Then the moment came, the words, Lewy Body Dementia, my mind raced to everything I read. I was trying to sort it out but I felt like I couldn't breathe. I remember saying, "Now what?"
Every day with Lewy is a new day.
Every day I still find myself asking "Now what?"
Every day I try to figure out a game plan and every day I try to find a way to add some quality to Hubby's life.
Every day I pray that Hubby feels loved and safe.
And every day I wonder if there is something I can learn to apply to our life for him, for me and for others.
I learned something important when Hubby had to take a trip to the ER a few weeks ago.
I realized I needed to make a folder of  information to have readily available to hand to emergency personnel. Trying to answer medical questions when my mind was racing, was difficult. I fumbled looking for insurance info and ID. The only thing I did have readily available was my Lewy Body Dementia info from heplguide.org I keep copied off and in my car for educational purposes.

I informed the ambulance driver that Hubby had a living will and I was informed that in our state, Arkansas, a living will is not accepted as a DNR unless it is a Physician signed DNR order. So I had to get a separate order signed by a physician.

It's an odd feeling knowing that a piece of paper, that I have control of, can be the difference between Hubby's life on earth or his eternal life in heaven with Jesus.
Hubby and I have discussed our end of life issues. We know what we want and don't want. I hope I'm not selfish enough to hold him in his current or progressed condition should the time to make that decision ever arrives. It is my personal opinion that dementia is a form of suffering so I hope my love for him is stronger than the love for myself and I am able to hand over the papers with a heart that knows I'm doing what he wanted and / or what's in his best interest.

I made a copy of the DNR and placed it in a Bright Yellow Folder along with other pertinent information . Two folders to be exact, one folder in the house , easily accessible to hand to on site emergency personnel.
The second I carry in the emergency bag in my car. If another trip is needed to the ER I will just hand them the folder.
I keep the originals in my purse.

I got the idea for the folders from another caregiver.
I love when caregivers are so willing to help others and share information as well as encourage.
I find caregiving to a little overwhelming at times, not as much physically as mentally and emotionally.
It's times like that when I withdraw into myself  finding a way to regroup and carry on. 
I know I can always find just the right shot in the arm or swift kick in the pants when I seek out the advice and support of other caregivers.
I hope that I contribute to the support of others.
Maybe this will be of some help.
The following is the information sheet included in Hubby's folder

Religious preference

(Name), Korean War Navy Veteran,
has a primary diagnosis of PTSD
and Lewy Body Dementia (info included)

His Wife and GUARDIAN (court order included)-(name) is his full time caregiver
(Name) is a fall risk so assistance with standing and walking and transferring may be necessary.
He may have a difficult time hearing and/or understanding spoken and written words.
He wears glasses, (dentures?) and had cataract surgery (date)

(Name) allergies

Due to(NAME) Lewy Body Diagnosis certain meds should be avoided like neuroleptics/ antipsychotics meds, anesthesia if at all possible. These types of meds can severely increase his Lewy Body Symptoms and could be potentially life threatening for him.

A list of current meds (NAME) is taking is included

(NAME)'s Primary care is handled through
Drs Name
Phone #
Mental Health Dr

EMERGENCY Contact is
(name & #)
(name & #)

Included in this packet are copies of
ID (copy of drivers license both sides)
Insurance (copy of card or any other Insurance info)
Advance Directive,
Most recent medication list
Most recent lab results
Info on Lewy Body Dementia

Originals are with his wife, (name)

So it's been 5 yrs since that dreadful diagnosis.
But there is also good news.
You see, Gods timing is always perfect.
As we sat with the Neurologist after he gave us the news, my cell phone rang.
Normally I turn my phone off or on vibrate and ignore it when we see the Drs.
But this time I did not, on purpose.
This day we were expecting news about a new grandchild.
And sure enough, the call came.
I looked at Dr and said "I'm taking this."
In a matter of minutes the world that turned upside down uprighted with the news of our grandson.
Perhaps that was just what I needed to get my heart beating again after having the breath taken away.

It's odd how we can go from one emotional extreme to another in a matter of moments.
I'm just glad the good news came second.

Sunday, October 7, 2012

This Little Piggy

One of the core criteria for Lewy Body Dementia is hallucinations. You can read about symptoms here at lbda.org.
Hubby has them but somehow he knows that the majority of them aren't real.
Of course there are the occasional incidents of people in the house and some in our bed.
Builders and workers doing things in the house and in the yard. Sometimes children or animals, etc.
I feel like we are blessed that Hubby's hallucinations are not ever worrisome to him, or at least that he confesses to. And when he can't decide if it's real or not he isn't afraid to ask me about it and takes my word although sometimes suspiciously.
The other day he was looking out the window of our front door and asked me "Where did that pig come from?"
I never get upset when he asks about hallucinations, I always try to figure out what he may be looking at and mistaking for whatever, or explain that I don't see the things he does, so I walked to the window and looked out.
Sure enough, there was a black pot bellied pig in our yard!
We have no thoughts as to where it came from.
It was quite comical to me and I oh so much wanted to pet it but I may live I the country but I'm not a country gal so I was intimidated by the pig, although I did go outside and get close to it until I was uneasy about it, then I ran in the house. LOL!

No hallucinations this time Hubby!

Hubby has settled back into home and into our normal.
I think about my respite time and how much I enjoyed it.
It brings me comfort through the day especially since my return to aide issues.
Our V.A. careplan expired BUT good news! They didn't wait for a month to renew and we transitioned to the new careplan without a lapse in care. That is would have transitioned but our regular "wash woman" is out for a while and we are at the mercy of fill ins when we can get them.

My workout schedule has been off for a while now and I'm missing it and going "soft", especially the last 2 weeks of over indulgence. I don't know why I do that to myself :(

So with life back to our normal and really not a lot to write about I thought I would share a couple fun moments with you.

Oct 3 - Earlier this evening, Hubby, BIL (brother in law) and I went for a short drive. I saw an animal in the road "sleeping" and Hubby asks me what it is. I answer.
I think it's a squirrel that didn't get across the road. (Mistake one, too many words)
Hubby says "Huh?"
I say, "It's a squirrel." ( we were closer for a proper identification)
Hubby says "Huh?"
So loudly I say "SQUIRREL!".
I think I scared BIL and I feel like the cartoon dog on Up! LOL!!!!

Later that night:

 Well, you know what they say about paybacks. 
I caught Booger (our dog) stealing Hubby's candy so I told Hubby who's in the kitchen raiding the leftovers & refrigerator. I walk into the kitchen a few mins later to check on Hubby and he had found Boogers cookies. :/

Then the next day:

 Confession time: So after my posts about Hubby and BIL last night and after my giggling stopped I was getting us all settled in for the night. While looking for my phone I remembered it was in my purse, but where was my purse? Not in any of the normal places , then it dawned on me. I left it outside on the porch chair when I was bringing Hubby inside, along with my house keys still in the door. :/ SQUIRREL!

That's how things are at our house.
How are you guys doing? 


Thursday, September 27, 2012

Respite...Take 2

Why , Thank You, I think I will take 2.
2 weeks that is.

Last November I brought myself face to face with the need for respite.
Fear of the unknown (read here ) kept me frozen in the decision for respite until I finally just closed my eyes and jumped in (read here ). Boy was I ever glad I did too. It was just a week and I didn't do anything that would qualify as special. I stayed home regrouping and close to the phone for contact if I was needed. It turned out to be a great relaxing week.

So now here it is 10 months later and I took advantage of the respite services that were offered by the VA. Hubby qualifies for up to 2 weeks at a time 2 or 3 times a year or more in emergency if needed. Lets hope we don't need the emergency time :)

I made special plans for this respite.
I called without hesitation and set up the date.
My time chosen coincided with my birthday! Imagine that ;-)
I planned on spending my 50th birthday with far away family and friends. Also reconnecting with my best friend from grade school. We hadn't seen each other in 34 yrs! I also made plans to connect with some on line caregiving friends. People that have become very close to my heart and I've been chomping at the bit to meet.

So I had these plans but was pretty reserved in my excitement for them, and if you know anything about me from reading this blog you know containing excitement isn't easy,  but I did since I wasn't quite sure how Hubby would react to another stay in respite.
I prayed.
A Lot!
I called in the prayer warriors too.
Hey, I'm not shy in asking for help especially when I know I'll get it :)

Hubby accepted the news about respite quite easily. I waited until a few days before hand to tell him. I know that telling him anything far in advance will leave him time to dwell on things and it raises his anxieties. Thus raising mine, so it was comforting that he accepted the information as well as he did. Power of prayer.

I remembered from the last respite they asked that I label his clothing with his name. Since he has a shirt he likes quite well with the name of his ship he served on embroidered on it, a few weeks before I had to pack for Hubby, I had several of his shirts embroidered with his name on them. He loved them. :)
I bought iron on transfers and did the same thing with his undershirts.

The  morning came and I got Brother in Law (BIL) up and off to school.
Hubby got up and I was able to get him ready to leave with no problems.
The ride to the VA hosp was good.

Once we arrived for intake, I took on my Lewy Body Dementia teacher persona.
Nurse and I had a nice visit about it, pharmacist and I did the same.
We went over all the meds Hubby takes and I made sure everyone understood that Hubby only received the meds listed and nothing more. I explained about his hallucinations and that he is not distressed by them and most of the time understands they aren't real so they aren't anything to get concerned about or anything that needs medicated. I must have been a little insistent that they understood that because when I said "He doesn't even get a tylenol unless it goes through me first." I got a "Yes Mam" from the pharmacist. LOL

I made sure they had my numbers and emergency contact numbers.
I had made a list of items packed and worn and gave to the intake nurse.
I also assembled information on Lewy Body Dementia for the staff to read and share.
Education, Education!

Hubby got anxious only once when I was leaving. He didn't know why I was leaving before he was settled in his room. I explained I couldn't stay and the nurse would take care of getting him settled. He was okay with that. He kissed me goodbye.
I walked away and didn't cry this time.
I believed he would be in good hands and I trusted my prayers to be heard and answered with a yes.

I had a day and a half to get myself ready for my own trip.
My excitement for the time was beginning spill out.
I still had BIL to place with his sister but that was a piece of cake since he already has a living setup at each of the 3 homes he lives in.
I also made an executive decision that there would be no "on purpose" exercising. "So Be It" Gavel strike

Now comes the part when I pull out my slides of my trip.
*Dims lights*

Oldest daughter and her Hubby accompanied me as travel companions.

Now I only had plans to do 2 things for certain.
1: Have a gathering on my birthday with family and friends.
2: Finally meet my on line caregiving friends.

Son in law said that was perfect, meet strangers and have a party.
Sounded like college to him LOL!!
Yes, the rest of the trip was just as hilarious.
We laughed the entire time we were gone.

Our first stop brought me to face to face with my newest friend Bette.
Bette cared for her mother, who had dementia, in her home for several years before her mother passed away last July.  My heart ached for Bette, rejoiced with Bette, cried and laughed with her. How could I pass through her state and not find her? Bless her heart for taking the time to come meet and visit with me. It was like seeing an old friend and I hated leaving her when our time was up.

Oldest daughter, Son in law and I continued our travels arriving in NY state, the place I was raised.
We did the typical sight seeing at the Falls and I filled my heart with the joy and love of being with my family and friends. The only bad part about it was that I didn't get to see everyone I wanted to. Fun part was reconnecting with my second grade teacher!

Our next destination took us to the outside of Chicago.

We took the train into the city and rode a trolly through the town. Sight Seeing at it's finest including a trip to the Aquarium and some deep dish Chicago Pizza and

Oldest Daughter, Son in law and I made our way to the Sears Willis Tower for the last stop of our vacation. 1400 ft, 103 floors up and we even stepped off into the glass bottomed ledge.
Confession, I walked in backward looking up and did a lot of nervous laughing.
I had a spectacular view of the beautiful city and to top it all off, I got the sunset. It was a perfect ending to my perfect respite.

We headed home the next morning and I returned refreshed and  rested. Normally in whirlwind travel we can feel tired upon return. Nope, this respite was just what the Dr ordered. I even had a few days before getting Hubby to catch up on laundry, visit the dentist, take our dog Booger to the vet and get BIL resettled into his routine. 

You might be wondering, "Did she even think about Hubby while she was gone?"
Oh yes, I did. Even though I was enjoying my respite time away I still kept Hubby in the forefront of my mind. I called all but 2 days to check on him. He did well and adjusted easily. He had one slide out of his wheelchair without injury and it was reported on one day that he was having some anxiety and was a little irritable. I laughed at that and said he was having a good day then ;-) But overall, his stay was a good one.

The day to get him arrived and as I walked into the wing Hubby was in I saw him sitting in a wheelchair in the hall. He looked good but I could tell there was a decline. He didn't smile at me when I walked in but he did smile at me when I spoke to him. He wasn't ready to leave so we went into his room. We were met by a male nurse and we all hopped in to get Hubby dressed and packed. Hubby needed to use the restroom and had been in there awhile so Nurse stepped in to see if he was ok. I overheard Hubby ask Nurse "Who is that woman?" I laughed out loud! I think that was the first time Hubby has not recognized me. For a long time he hasn't "really" known who I am as his wife, but he has always recognized me as someone he knows or is familiar with even when he gets me confused with the "other" Kathy.
When he came out of the bathroom I had him packed. I handed him his hat and asked him if he was ready to transfer into his own chair and go home. His answer was "Yes, but lets get one thing straight before we do. Who are you?" I explained I was the love of his life and the woman he couldn't live without LOL!!! 

He kept asking me about the "other Kathy".
The nurse assured him that I was the same woman that was there last time he stayed with them. I offered that I had colored my hair to remove my natural highlights so that might be confusing him. He accepted what he was told and came home with me even though I could tell he wasn't quite sure.

We made a few stops on the way home. We had lunch with Youngest Daughter, Other Son in Law and Youngest Grandson. All familiars to Hubby. We stopped to see a friend of Hubby but we didn't stay long as Hubby had physical  meltdown. I finally got him home and settled in his bed.

The next day we had to go back to the VA for a hearing aide appointment. Hubby has complained about hearing for a while and to be honest, even though he does have some hearing loss, I believe it is less his ability to hear and more his inability to process the words. On the way home he complained about the noise and half way home of our 70 mile trip, Hubby had another meltdown physically and mentally. He slumped down in his seat and stopped conversing with me. I got him home and in bed but he was basically worn out for the rest of the day.
Kathy diagnosis : Too much auditory stimulation for his brain to process sent him into automatic shutdown.
He has not worn his hearing aids since.

Hubby's 3rd day home had another Dr appointment scheduled but at the facility closest to us about 20 miles. We finished early enough to take Sonny Boy out for his belated  celebratory birthday lunch. Hubby did well this time but became very needy as the day and night wore on. As soon as he needed one thing I was trying to get  and do for him, he needed or wanted something else. I felt like I was running through myself for him. I stopped and stared at Hubby and laughed. I had just been on an 8 day whirlwind road trip and felt great and Hubby was home 3 days and I was exhausted! 
Life back to normal :)

I learned a few things about myself and life in general on this respite.
The first thing was
NEVER EVER color your hair the day before you travel IF you are using a new brand. You might wind up with an intense color.
Secondly, If you plan on having pictures taken make friends with spanks and do not pack the pants that might fit in the back but cut you off in the middle.
You could end up looking like a sausage with a rope tied tightly in the middle.
And Third, don't brag about your running ability if you can't run faster than the people in Chicago are walking!

Respite, it's all it's cracked up to be :)

Wednesday, September 5, 2012

Waiting Game

Hubby had a follow up appointment with the dietician in our efforts to get him a liquid nutritional supplement from the Veterans Association.

As instructed at the first appt I added more sauces and gravies to Hubby's diet. Changed his milk to whole and pushed the high fat high protein and offered a nightly ice cream treat. you can only imagine my emotional  pain as I declined from partaking in the delights!
For the first 2 weeks Hubby ate well. He even had a 2 week weigh in at the time that revealed a 10 pound INCREASE! Seriously! I couldn't believe it. I honestly thought the scale was broken. Dietician recorded the date and weight and said she would see us at the 3 week appointment time.
But the foods began to have a negative impact on Hubby, as in more constipation than he experiences anyway. He began to refuse the food or limited what he would eat by half or more. I continued with sauces and gravies and  the whole milk anyway but as the saying goes, You can lead a horse to water...

Appointment finally came and another weigh in was had. This time a LOSS of 5 pounds was recorded.
During the appointment Dietician didn't take into account the previous weight gain and the now weight loss. She looked at it all as a gain of 5 pounds and asked if I wanted to continue with the request for liquid supplements.
Uh, yes.
Then I told her what I had witnessed and handed her the 3 week food diary while I  mentioned the weight loss within the last week as well as the extreme constipation and the issues that causes. Abdominal pain and more confusion.
Then I handed her my written plea for the supplements.

Request for Liquid Nutritional Supplements

A request for liquid nutritional supplements for Mr (Hubby) has been made by me, Kathy, his wife/caregiver, due to his continual decrease in weight since Dec of 2011.
On July, 2012 he had an average loss of 1 pound per week even though his appetite had remained good, and proper and adequate nutrition was consumed.
Blood test on July 10, 2012 verify that Mr (Hubby's) cholesterol, blood glucose and other levels were within normal limits.
An appointment with the VA dietician was made and kept 2 weeks later on August, 2012. Weight loss of 4 lbs was recorded at that time. A loss of 4 pounds in a 2 week period. Suggestions for increasing his fat and protein were made and handouts for educational purposes were distributed to me.

I informed the dietician that Mr (Hubby) suffered with constipation problems. He takes a stool softener daily and dosage of Polyethylene Glycol every other day or daily as needed.
I also informed the dietician that Mr (Hubby) had limited to no daily activity so an addition of more proteins and fat might prove to be a problem with more constipation but we would take and use the suggestions as part of the process to receive the approval of supplements.

A 3 week diary was maintained for monitoring consumption.

I feel it is in the best interest of (Hubby) to receive the nutritional supplements not only due to the loss of weight which I know can not be restored but as his dementia increases, the amount of food he consumes decreases. Trying to encourage Mr (Hubby) to take solid foods that will increase his constipation suffering will do nothing more than agitate him.
End stages of dementia usually result in the patient being bed bound. Solid food consumption is decreased by the patient and it is my understanding should not be heavily encouraged as the body goes through the shutting down process, yet hydration still needs to be encouraged for the comfort of the patient. Liquid supplements will provide some fulfillment of hunger and aid in hydration.
Maintaining My (Hubby)'s comfort and his calm is the goal.

Respectfully submitted

Dietician said it sounded good and she would have to submit it for approval and that she herself was recommending the supplements.
Yet with all of this the request was denied by the pharmacist. I don't know how the pharmacist has more pull over the dietician but apparently that's how they run things at the V.A.

Got to love the government. At least they are saving some money and boosting the economy since I will now purchase the supplements on my own :)

Saturday, September 1, 2012

Stubborn Independence

Oh my, what a day.

Poor Hubby took a fall and banged the side of his head leaving a mark and I will be forward thinking enough to guess a black and blue face in a day or two.

His attempt to walk from the bed to the bathroom proved futile. He called for me and I immediately went to him but the moment I stepped in the door I saw his grip on the hand rail release and I stepped into the twilight zone of slow motion as I watched him fall over and I attempted to get to him.
So close and so far away and my stomach knotted as I witnessed his stiff unbending body take a tree fall into a piece of furniture and his head scrape down the front of it. He lodged between the end of his bed and the antique sewing machine.
I was horrified as I watched Hubby fall and overwhelmed with frustration at myself for not getting to him in time to, at the very least, deflect his angle and hope he landed on the bed.
I've actually done that in the past by giving him a hip check as he was falling to prevent serious injury.
This time I was too late. Realizing Hubby was in an awkward position I had to drag him out from where he was trapped. Hubby wasn't unconscious but he wasn't responding to me either. He was making some kind of a low moaning noise.
After I got him into the open and sitting up, I could do nothing but cradle him in my arms and cry.
I couldn't even survey the damage I feared he had. I had to pull myself together but I was struggling to do it.
After a few moments I tried talking to him again. He was responsive this time. I sat back and checked him for injury. A mark on his face and ear. A mark on his wrist but he was moving all fingers and wrist. He wasn't complaining anywhere else.
I suggested a ER visit without the ambulance but he refused.
His face wasn't swelling, he seemed alert and oriented (?) Okay alert and oriented for Hubby. So I suggested we get him up and in bed. He agreed yet wouldn't accept my help to get up. He insisted on doing it himself and after several minutes he finally accomplished it. I stood close by ready to assist, wanted or not if the try took a turn for the worse.

I wonder when or if he'll ever realize that he needs more help in the areas of walking.
The fluctuation of Lewy Body make it difficult for him to understand he can't do the things he thinks he should.
I know he wants to maintain his stubborn independence, I get that, but at what cost to him?

Just the other day he was having a really good mobile day and during our outing he wanted to stop at a friends place of business. I always get nervous when he wants to make stops in town but I did and he insisted on walking in so I let him without fussing about it. I sat in the car and videoed him as he made the attempt. This looks farther than it is.

He finally made it inside and through the glass I could see him talking with his friends. After a few minutes they walked outside and the friend stepped in my direction. I got out of the car as friend proceeded to tell me that Hubby was having trouble getting back but didn't want his help,
"He said you would help him, cause you always do."
Friend was right, at least I always do try.


Thursday, August 23, 2012

Some days...

It doesn't pay to get out of bed.

The day actually started okay.
Hubby had a Dr appt scheduled and as the norm for him when he know about an appointment he stresses about it. Asking every day when it is, what time, what day is it now, etc etc as though he is worried he will miss it.
We arrived in plenty of time and had a short wait.
We were escorted to the room and Dr was complimenting Hubby on his new haircut (I buzzed it off again but I wont tell you about removing a middle section of one of his side burns by accident) and his new shave  (he FINALLY let me get rid of his beard). Hubby was bright eyed and talkative and Dr  commented on that.
I told Dr that was one of the bounces we get with LewyBody.
We all discussed meds and how Hubby was feeling to which he replied, "Oh alright I guess, I don't really know" and as if someone flipped a switch, Hubby got very angry in tone, body posture, attitude you name it and proceeded to tell the Dr about how he was mad at the VA for allowing me to steal all of his stuff and him have nothing. He didn't understand how I was able to convince the VA that he was sick and the do him like they did.
I think Dr was taken back a little because he had not seen Hubby like this before.
Dr asked Hubby what he thought was wrong with him and Hubby replied, "Not much of anything that I can tell."

I'm not going to go into all the details of Hubby's beliefs of lies and deception, or Drs attempts to smooth Hubby's feathers to no avail. Dr couldn't get straight answers from Hubby about certain accusatory things so he finally just cut him off saying we could do that all day but it's hard to converse with someone that cant understand that he has an actual problem and it would do nothing but upset Hubby trying. Our appointment ended.
Hubby was not happy.
I wasn't happy, but not at Dr and not because of what Hubby said. I was not happy because there was obvious distress in Hubby's tone.

As usual I try to fix everything with food. I suggested lunch.
Maybe that only works on me but Hubby wanted no part of it so we came straight home.

Once home Hubby settled in then came to find me, we had to talk.
He was leaving me.

This is the part I didn't do well at and things went down hill pretty fast.
Actually the ground opened up and we plummeted.
I did not fall gracefully. 

Hubby took a breather as I was breathing hard, he returned to tell me he wanted a phone number so I wrote it down and handed it to him. Then as a courtesy (read with a sarcastic tone) I handed him the phone. He stared at it (because you don't know how to use a simple phone!) He asked me several questions about the phone and I did explain how to use it and even suggested he use the pick up and dial phone in our bedroom. No extra on off buttons besides the numbers to push. Hubby stared at the phone as I stared at him, then he threw the phone across the room. I mumbled, great, under my breath and he yelled at me for not dialing for him. Snap, so I yelled back. "If you think you're able to move out and live alone you should be able to make a phone call without help. Prove you can do it!"
Go me, that's telling him, way to go girl :/

Hubby retreated to his bed and I felt like dirt :(
I try so hard not to get wrapped up in the negative of dementia but some days it feels like I jump in feet first.
I know how hard it is for me to live with the difficulties but I can only imagine how difficult it is for Hubby to live with it every day without escape. Why do I make it even more difficult for him sometimes?

We eventually settled down and talked.
He said he was a burden, I said he wasn't a burden but there were times that his Lewy Body was difficult.
I also said I knew he didn't understand why things are happening the way they are and I was sorry that I added to his stress with my own behaviors. I try not to. I don't always succeed.

He made his call, I dialed for him.
We are getting ready to go out for supper.

Saturday, August 18, 2012

Room Service

"Kathy!, You need to call home ASAP!" Not exactly the words you want to hear on your voicemail but the ones I got yesterday. I dialed home as I ran out on my workout. 

I tried to remain calm but I'm guessing I'm not real good at it. I sprinted across the parking lot and as I sat in my car to call and get the scoop a stranger walked over to me window to see if I was ok. I smiled and assured her I was. Bless the heart of concerned strangers.

Hubby had an unresponsive fainting spell while his aide was there. According to her, she had given him his sink bath and he complained about his neck, then just laid back in the chair. She couldn't get him to respond to her so she called the paramedics then called me. I didn't hear my phone when she called the first time and I had just missed her call the second, that's when I got the voicemail.

I met the ambulance at the Hosp and claimed the white socks I saw through the back doors. Turns out it wasn't Hubby but I had enough anxiety that I would have claimed the lady on the stretcher as my own and been concerned for her too.

What seemed like an eternity to me, eventually another ambulance pulled up and I saw bare feet. They were mine, I mean Hubby's. I checked him in and met him in the room. They were dressing him in a hospital gown because his pull ups were the only clothing he had on when he arrived.

My assessment was that this was an incident that has happened before with Hubby or incidents similar to this. Had I been at home we would not have made the trip but standard procedure for the Aide is to call emergency personnel. I understand that.
I educated again about Lewy Body dementia. I was oddly happy that our contact was with new personnel. :) ER Dr. was also grilled and he was knowledgeable about lewy.
ER Dr. asked Hubby some questions and he was able to answer a few, then ER Dr and I discussed what happened and I told him my thoughts. Hubby has had similar incidents like this before. You can read that story here.
So the plan for the day was to do a routine blood workup, and an EKG, ER Dr said unless he saw something out of the ordinary he didn't see any reason to try to do a battery of tests that would have Hubby hospitalized. The less stress on Hubby the better he thought it would be. I wholeheartedly agreed.
Youngest daughter came to join us and check on her Daddy. I stayed in contact with Sonny Boy and Oldest Daughter who offered to come. I assured them this was not a big thing and all was well. I promised to let them know if that changed for any reason.

EKG man came in and did a tilt test. Before he started he explained what he was going to do and asked about Hubby's shaking. Ahhhh, student number 4! He now knows that Lewy Body has Parkinson type symptoms resulting in a movement disorder. EKG man said it might be difficult to get an accurate reading due to that but we would do the best we could and see what the Dr had to say. Blood Pressure taken laying down, BP taken sitting up and BP taken standing. The easiest was laying down as Hubby needed assistance staying upright while sitting and complete help standing. EKG man called in reinforcements because he couldn't hold Hubby and push the button on the BP machine. It took several attempts to get accurate readings, Hubby's blood pressure appeared to be all over the spectrum, dangerously high to mortality low. They wrote the readings they could get and carried them away after settling Hubby back in the bed.

A few mins later a tech came in to draw blood and she was visiting with Hubby. He smiled and chatted away in what was his usual flirty self. A side of him I hadn't seen in a while, then he introduced us to the tech, He said "This is my daughter and this is my wife and I'm the proud husband and father." My heart melted that he remembered me as his wife, and Youngest Daughter and I awwed at his sweet words.

After the tech left, Youngest Daughter said, "You sure were being nice."

Hubby replied, "You have to be nice to the people that can bring you food."

Youngest Daughter and I laughed loud!

A few mins later a nurse came in and asked if we needed anything, Hubby emphatically  said "YES, something to eat!." 
Youngest daughter and I laughed at his request. 
A short while later the nurse came in, with a plate of food! 
I'm still shaking my head. When do you get to order and have food delivered in the ER?!

ER Dr returned after a while and said everything looked good. He just had one issue with the EKG and he held up the paper. I cut him off at the pass and assured that the "blip" he saw was a normal part of Hubby. 
Hubby has a misbeat in his heart rhythm. He has had it for many many many years and it has never presented a problem for him. ER Dr felt comfortable that I knew what he was going to say and dismissed us for home with instructions to follow up with Hubby's Primary Care Dr. 

YAY we get to go home! Hubby was still eating his plate of food they brought him and I wondered what he would wear home! I had a bag in the car that had some extra pants and undergarments and socks but no shirt. I fussed at myself for not having a shirt then fussed at myself for fussing at myself. Now was not the time to beat myself up over a shirt. 
 I retrieved the bag and when Hubby finished his food Youngest Daughter and I helped him dress and they allowed him to wear his hospital gown home.

Discharge papers in hand , Hubby strapped in the front seat, Youngest Daughter kissed goodbye, we made our way home.
Got Hubby all settled in his own bed and the rest of the evening went fairly smooth.

I did however repack a bag with a shirt this time.