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 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:
(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)
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
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)
Most recent medication list
Most recent lab results
Info on Lewy Body Dementia
Originals are with his wife, (name)
So it’s been five years since that dreadful diagnosis.
But there is also good news.
You see, God’s 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.