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.

Showing posts with label Hearing. Show all posts
Showing posts with label Hearing. Show all posts

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 :)


Thursday, August 16, 2012

Can You Hear Me Now?

Today I had a first.

Hubby had an audiology appointment at the V.A. and being his chauffeur and helpmate I accompanied him into his appointment. We were ushered into a small very gray room with odd looking doors. As we walked down the hall I mentioned that the rooms looked like they may have been vaults at one time. The closer I got to the door I viewed it was a thick door with another thick door attached to it. Peculiar looking in deed with long pull handles instead of knobs. Dr. Audiology took the wheel chair and lifted it over a raise in the floor. I surveyed the raise and it was a small gap in the floor. It actually felt like we were going into an elevator or vault. Then Dr Audiology closed the door, with some umph to do so! Now at this point, had I been claustrophobic I may have been screaming to be let out! Then the quiet set in. And I mean quiet. We were in a sound proof room. How cool was that?!
Dr Audiology,... I'm just going to  call him Ear Dr because spell check keeps alerting me to my improper spelling of audiology :/ My fingers are going to fast and mixing up my letters.

Ear Dr. took some time to visit with Hubby about his hearing and ask Hubby what he thought about the problem. I thought that was very nice of him. Ear Dr explained the types of testing he would do, sounds and word recognition. He fitted Hubby with the earphone equipment and while he did that I asked Ear Dr if he noticed Hubby's Lewy Body diagnosis. He said yes so of course my next question is,,,Are you familiar with Lewy Body?
Ear Dr was not as confident with his knowledge and admitted he was only vaguely familiar with it. We discussed Hubby's hearing issue as a possibility of  less hearing loss and more lack of understanding but since it's impossible to tell where the lewy protein deposits are taking up residence in Hubby's brain we will just see where we are and go from there. I liked Ear Dr for being so honest about his Lewy knowledge.

All fitted for his testing, Ear Dr left the room through the big doors and the outside noise swept into the room. Very interesting experience for me, then the silence again as he closed the door. There was a fairly decent sized window in the room, at first I thought it was one way glass but I think it was just hazed over, maybe on purpose. It was butted up against what looked like another hazy window and I caught a shadow of a person sitting down. I surmised this was Ear Dr.

I sat quietly in my chair I was offered and looked over the room. Not much to see or rather nothing interesting to go and explore or so I told myself since I could be seen through the glass and heard as I realized when I saw a microphone protruding from the wall next to Hubby. I remembered my grandmother telling me to mind my Ps and Qs. Hmm come to think of it, I use that phrase myself but I have no idea what Ps and Qs are. So I minded them and stayed quietly seated.

Hubby sat in his wheelchair waiting for the test to start when all of a sudden he shot up in his seat and he looked around the room. I will only guess that the test started and the sudden noise scared my easily startled Hubby. His eyes got HUGE and I broke out in laughter but quickly contained it in the form of the Muttley the Dog laugh! You know that cartoon dog that does that odd laugh?
Hubby could hear Ear Dr but I couldn't and occasionally Hubby would say "yes" or say a random word. This went on for a little while but I kept recalling the surprised look on Hubby's face and had to keep the Muttley laugh in check. Let me tell you, that is not easy to do in a soundproof room and you're the one making the noise! I kept turning my head hoping to see something to concentrate on and divert my thoughts. Finally I had to tell myself "Get a grip" and I did until I suppose another sudden sound startled Hubby and he jumped and looked around again. I think I snorted a little :/
I'll be honest, as I sit here and write this I'm still smiling.

The shadow of the person in the other room got up, In a moment Ear Dr came back into the room and fitted Hubby with another devise. This one wasn't directly on the ear itself but sat just above the ear towards Hubby's temple area. This was interesting enough to me to keep me occupied. Ear Dr apologized to Hubby for startling him, Hubby said he just wasn't expecting it.

Ear Dr left the room and in a moment I saw the shadowy figure take a seat. So at this point I'm pretty much thinking I'm right in believing it's Ear Dr.

This time I hear a beep noise, I look around, Hubby says nothing. It stops. I hear it again, Hubby says nothing, so I ask, "Can you hear that?" Hubby says "yes" Then I hear the voice of Ear Dr coming from Hubby's head. I sit quietly and concentrate on the beeps that Hubby isn't acknowledging and the ones he is.

Ear Dr. returns to the room, disconnects Hubby and says that it appears that Hubby has lost some hearing but they were going to fit him for hearing aids. He said that it wouldn't restore Hubby's ears back to his youth but it might help remove some of the stress Hubby may be experiencing trying to hear and providing him with less stress and some comfort was what they wanted to do.

I sure did like Ear Dr.

So our Audiology appointment went quite well. Hubby should have new hearing aids in a few weeks. Lets pray that Hubby does get some relief with them.

Thursday, April 29, 2010

Huh?

Everything I say must be repeated.
EVERYTHING I SAY MUST BE REPEATED.

Lewy has taken Hubby into the world of garbled language. He doesn't always hear what I say. I don't know if it's my tone he can't hear or if his brain can not process the words correctly. The latter is actually my guess. This has been going on for some time but is increasingly worse.

I admit I am tired of constantly repeating myself to "Huh?".

Being more aware that Hubby had this hearing difficulty I try to speak up when I'm talking. I have even tried saying his name and getting his attention on me before I speak. I don't always remember to do that but I do try. I try and remember to speak slower, something that has always been a difficult thing for me as I grew up in the North and transplanted myself to the South. Some habits are difficult to completely break.
The main thing is I still try to converse with Hubby.

Conversation is becoming increasingly difficult though. For one I have never been much of a conversationalist. I steered away from politics as Hubby, who loved politics, had enough opinion for both of us and mine wasn't necessary. That's fine. News headlines don't make there way into the home by way of TV as I have found that Hubby gets more anxious when he watches the news. When state or world news became part of his own personal reality I took the easy way out of avoiding distress by avoiding the news or any other program that evokes thoughts of insecurity or danger.

Since we are basically home bound we don't get out and see people. So our social conversations are lacking. And those we do see on the rare occasion get as confused as Hubby when he tries to converse with them. They look at me and I just shrug, smile and divert the topic.

Mail or pamphlets that Hubby tries to read frustrate him. He was looking over a piece of mail we received and told me he couldn't read it. I asked him why and he said he couldn't see it or understand it.


We don't converse about TV programs either. As time went by Hubby's ability to keep up with a show plot diminished also. It's no wonder he can't keep up with a conversation. Even a short one.

I do get tickled at some of our conversations we try to have. I also get annoyed at having to repeat everything I say. Mostly I get tickled.

For instance,

Setting: End of a tiresome day. Hubby has been awake and needy all day and I have had to repeat myself to Hubby's "Huh?" the vast majority of the day.

We have had a few chilly nights lately. Hubby complains about being cold ALL the time so this cold snap has been a little extra chilly for him. As we were calling it a night I asked Hubby if he wanted another blanket on the bed for his feet.

Hubby said "Huh?" (Seriously, again?!grr)

Louder, I say "Do you want another blanket on the bed for your feet?"

Hubby gets a confused look on his face and says, "Do I want a bucket?"

I get a annoyed look on my face and glare at him. With agitation in my voice said "NO! Now why on earth would I put a bucket on the bed?"

Hubby's answer. "I don't know, you said it."

Dumbfounded I just stared at him and fell out laughing.

And thus is how many of our conversations go :)

So much better than comedy TV!