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.

Saturday, June 23, 2012

Tired

I don't feel depressed. I don't have brain fog. I don't cry all the time. I still feel joy in my soul. I laugh, I genuinely smile, I exercise, I eat properly (most of the time) I drink my water. I'm just tired. I'm not exactly sure when I started feeling so tired but I do, and tired enough that I feel like it's interfering with my life, so I made an appointment to see a Dr for a general check up. They told me I had to be re established because it's been more than 5 yrs (YIKES) since I've been to a Dr and I would be considered as a new patient. I was able to work the appointment  time to fall into the aide time Hubby gets, and our aide has a heads up I may be squealing tires as I come back down the driveway. Let's hope it all goes without a hitch and I'm not forced to bolt from the Dr office mid exam to get home in time. I'm in hopes it's nothing more than a little low on iron or something else as simple. I like to be optimistic.

Speaking of Drs, Hubby had an appointment with his Mental Health Physician the other day.
I allotted the proper amount of preparation time and we made it, YAY!
The appointment was routine and we (I) talked about how Hubby is experiencing more anger issues, Hubby agreed. Dr talked with Hubby about this and made a few suggestions for him one was a slight increase in Hubby's antidepressant, a suggestion I agreed with and the other,
well,
maybe I misunderstood, maybe I took it personally.

MHP addressed Hubby's anger and asked why Hubby felt like that.
Hubby tried really hard to say something but never really got a sentence out completely so I offered that I felt like Hubby was angry at his situation.
(Heck, if I were Hubby, I would be angry at my situation too.)
Hubby agreed with my assessment.
I offered that Hubby feels like he cant do anything.
Hubby agreed.
MHP asked Hubby what type of things would Hubby like to do.
Hubby said he wanted to do stuff.
MHP said he thought that Hubby wanting to do stuff was a good idea. I agreed it was BUT Hubby's idea of doing things was that he wanted to do them alone. Like going to town on his own. Hubby agreed with me and included that I wouldn't let him do anything.
Now this is where I may have misunderstood.
MHP suggested that maybe we, WE as in you and your wife, could come to a compromise. Yes there were places Hubby might need to reconsider going and things he would have a difficult time doing but with a compromise and the support of family and friends he saw no reason Hubby couldn't do some things.
I think my brain matter started to ooze a little.
MHP doesn't know that almost everyone has slipped off the face of the earth for Hubby.
MHP doesn't know that I sit at the ready to take Hubby anyplace he chooses when he chooses.
MHP doesn't know that I drop everything to get ready at Hubby's whim and then wait for hrs to learn that Hubby has changed his mind, forgotten or doesn't feel like going and doing what he requested.
MHP doesn't know how many suggestions I have made to Hubby to try different things. Things like Day Centers and Sr Centers, I even tried to hire a companion for Hubby but Hubby refused the service.
MHP doesn't know that Hubby's aide and I are just about the only constants in his life.
MHP doesn't know that Hubby sees MHP more often than he sees some family members.
MHP doesn't know how much compromising I have tried to do.

I wiped the brain matter from my eyes as I filled MHP in, now he knows.

I also said that Hubby has talked A LOT about leaving me, going to town, living alone.
MHP asked Hubby if he wanted to go to town and live.
Hubby said "No"

WHAT?!! ARE YOU FREAKIN' KIDDING ME?!!!!
I think my brain exploded with that silent screaming but thank goodness for my skull keeping it contained and no leaking out because the pieces were so big that it blocked the ducts in my eyes.

I think the look on my face was enough for MHP.

We concluded our visit and Hubby and I decided to meet oldest daughter for lunch.
Lunch was nice but as the time wore on it became more than apparent that Hubby was exhausted. He chose not to finish and didn't want a take home box. I took him home and settled him down where he stayed the rest of the day and evening.

It was a very great effort for Hubby to get up and get anywhere at a certain time. My constant but gentle (I promise gentle) pressure to get dressed and shaved and accessorized leave him feeling exhausted and adds confusion. To Hubby, my directions for what we need to do as I assisted dressing him must seem like lightning speed to his ever slowing brain function even though we had a 2 1/2 hr window for Hubby to get ready and it too the entire time. I scrolled though the accessory list, here are your, watch, rings, glasses...
I double checked he was buttoned, zipped and straightened. After locking up the dogs and on the way out the door I ran through the mental list of things I needed and away we went.
As we drove down the road I glanced over at Hubby and noticed the sun shining on his wedding ring. I wasn't wearing my wedding ring but I wasn't upset because I hardly wear it anymore.
I thought about my ring, I thought about how easy it seemed to not wear it.
I remembered how hard it was to accept the fact that before Hubby's diagnosis I thought my marriage was over and after he left me I couldn't not wear it. My heart was still married, so for months and at the shaking of the heads of friends I continued to wear my ring. Then one day I changed hands for it, and after a year of separation and attempting to come to terms with the finality of my marriage, with the help of a counselor, I put my ring in a drawer. I never expected to wear it again.
When Hubby and I reconciled I was delighted to once again wear my ring.
As I did more and more physical labor around the home, like building and remodeling, I feared I would damage it so I wore it only when we went somewhere.
As Hubby's Lewy Body progressed and his recognition of me as his wife left him, Hubby became accusatory of my possession of the ring. He believes I stole the ring from him. On more than one occasion he has said that the ring does not belong to me so to avoid a conflict, a heated one like we have had before, I leave it in the drawer so he isn't reminded when he sees it. It's sad that not wearing it isn't more upsetting to me.

And then there is today. Hubby called for me. Lately he has seemed extra needy and clingy. Always wondering where I am and what I'm doing. As I always do I went to his side. He started and stopped his words several times then eventually said, "I don't think I should call you Hun." I asked why he felt like that and his answer was "It's not right, but I don't know what to call you." ; Please remember that our conversations are not fluid so it takes time for Hubby to get through a sentence. Even when the sentences are mine, I must chop them up in small pieces waiting for him to acknowledge that he understands what I have said. , So, I told him he could call me Kathy, that was my name and he could do that. He agreed he could do that. I walked out knowing he was satisfied with the answer but feeling like another piece of me had been lost. Odd thing though, he's called me Hun all day. Go figure.
Man I'm tired.

6 comments:

  1. Kathy, Thanks for you comments and understanding. Linda and I learn much from your prospective. I also experience anger/frustration over my condition. I was a strong, forceful, confident, man. Capable of anything, I thought. Now I get tired getting out of a chair! My strength is all but gone, and I loose track of where I am and what I am saying. I get frustrated because I am not who or what I was. I feel like who I was is gone. No depression med can take this feeling away. If it were not for Linda, I would give up. She keeps me going. Marcel the Wonder Poodle helps too! Thanks!

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    1. Oh my goodness I'm so late in replying!

      Thank you for reading and mostly thank you for sharing your life, your struggles and your accomplishments. As I have said before, I learn so much about being a better caregiver for Hubby when I have some insight that you share with us all. I appreciate you, Linda and Marcel the Wonder Poodle :)

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  2. My mom has LBD and is normally a sweet person. But occassionally, she becomes paranoid and hurtful. Today I just had to leave the room and go have a good cry. After reading your blog, I don't feel so alone.

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    1. Thank you for commenting :)
      I'm glad you found some familiarity to cling to. Although it makes me sad at the same time that you need to.
      One of the main reasons I started blogging publicly was so I could help someone not feel so alone in their thoughts, like I was when Hubby was first diagnosed.
      I hope you stay in contact :)

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  3. Kathy thank you for writing what I've been feeling for the last few years! You certainly have a way with words. I have found the easiest way to combat the questioning or outrageous requests is to change the subject. My husband was recently diagnosed, 2010, and I am constantly trying to get the caregivers at the VA nurses, doctors etc, to document his behaviour. For a while I felt like they all thought I was making it up! Our neuropsychiatrist has asked me numerous times about placing him and it will come to that eventually, but now he is having more good days than bad. Good Luck to you both and GOD BLESS. Kelley

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    1. Hi Kelly :)

      Boy can I relate to feeling like, perhaps it was ME that was having the issues! Early in Hubby's diagnosis he would seem so fine around others and then on occasion someone would witness what I was living and I wanted to yell and say, SEE THAT'S what I've been talking about! Then I was pleased they saw it, yet so sad that they did.
      Lewy can be very cruel with it's fluctuations.

      Hubby's Drs have suggested I place him also and I know the time may come for me to do that for his sake as well as mine. I'm just not ready and I don't feel like his care is suffering.
      I'm happy your husband is experiencing good days. Appreciate them all :)

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