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.

Friday, December 9, 2011

The Best Worst Dr Appointment

Lewy had a Neurology appointment the other day.
Just a follow up.

We took the 70+ mile trip in morning traffic.
I really dislike early morning appointments. It takes a GOOD 2 hrs to get us ready to walk out the door. Then There is the car loading of Hubby and wheelchair. The weather was just chilly but I brought along heavy coats , just in case. Double checked we haven't forgotten anything. I keep a duffel bag of undergarments, extra clothes, handiwipes, paper towels and water in the car at all times but I still check to see if it's there.

We made it with plenty of time for the pit stop and be on time for the appointment.
Of course WE have to be on time but the V.A. schedules so many appointments at once we never seem to get in to see the Dr on out scheduled time, even if it is an early morning appointment.
We are very good at hurry up and wait.

Neuro Dr, whom we really like, comes out to greet us and escort us to his examining room.
Once inside he begins asking Hubby how he is, making comments about his appearance and asking about Hubbys life in general.
The appointment started off slow and easy enough and I was thinking this appointment would be the same as all the others. Hubby would pull it all together and pull a "showtime" move, but instead, the appointment  quickly degraded when Lewy went into his diatribe about how he was being taken advantage of and I was stealing from him...in essence, Hubby acted in the same way towards Dr Neuro, that I must live with every day. Hubby became angry with Dr Neuro when Dr explained that he believed Hubby was getting the best care.
Dr Neuro was very very kind and compassionate towards Hubby but very forthright about Hubby's Lewy Body Dementia limitations.
Dr Neuro told Hubby that he wished so much that Hubby would stop expending so much energy on anger and concentrate on enjoying the rest of his life.
Hubby was having no part of it and the angry words continued.
Dr Neuro looked at me and I said, it's like this every day.

Hubby complained about his life and about me and he told Dr Neuro that as soon as he got home he was packing his things and moving.
I lapsed into silent tears.
Then, Dr Neuro made a statement that made me have to stifle a laugh.
He agreed that Hubby could go home and pack but "All you will accomplish is having your clothes in a suitcase."
Dr Neuro told Hubby that he believed Hubby was getting excellent care. He said he was neatly dressed and well groomed ( gold star for me and I liked it) He appeared well perhaps had a little "biscuit poisoning" going on in his belly as he reached over at Hubby. I of course turned my head, sat up a little and sucked in my gut to hide a little of my own biscuit poisoning. ;-)
Dr Neuro let Hubby talk as long as he wanted yet all the while assuring him that he (Hubby) was being well cared for and we were all doing everything in the best interest of Hubby.

Did I mention how much we like Dr Neuro?

Dr Neuro also told Hubby that there were only 2 choices for Hubby.
Stay where he is, or go to a nursing home.
He asked Hubby if a nursing home was what he wanted. Hubby said no.
He then clasped Hubby's shoulder and said, You should appreciate what you have. Go home and think about these things, it's the best for you.

He asked Hubby to do a few things and tested reflexes and limb movement.
We discussed meds and agreed that we are as far as we can get with meds.
I expressed my thoughts about Hubby's difficulties rising from bed so we, Dr Neuro, Hubby and I, all agreed a hospital bed would be a good idea.
They should deliver one in a couple of days.

Dr Neuro also decided that at this point physical exams are no longer necessary BUT they would stay on call if I felt we needed them. They would be happy to help us in any way possible.

I was sad that Hubby had such a bad time at the appointment .
I was happy that Dr Neuro got to see Hubby as he really is.

I was glad to know I would not have to get Hubby prepared for such long trips for appointments.
I was saddened that we had reached this point.

The ride home was silent.


  1. I know your pain.

    I never thought I could put my mom in a nursing home. Now I believe that it's the best thing I could have done for her and me. I am Mom's advocate. I am always with her, watching and making sure she's comfortable. She has lots of people around her. She has friends. She is still having more good days than not so good ones; more good days than when she was home with me.

    I am grateful for the nursing home because I am finally able to rest and take care of myself.

    If the time ever comes for hubby to be placed in a facility, I am convinced that he will adjust and enjoy your visits. I have seen it over and over and over again with every new resident that comes to live at the home.

    Placement is harder on us the care giver.

  2. I can't imagine being with someone with LBD 24/7. Even though I thought that is what I wanted for me and Mom. You are doing a very hard thing. Your Dr. was very nice to support you to your husband. {{HUG}}


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