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.

Sunday, April 29, 2012


Decision #1)
Hubby has an appointment with the V.A. in a couple of days and at that point we will decide on palliative care/ hospice.
I knew that this would one day be a decision we would need to make and it's been weighing pretty heavy on my mind since we asked for the consult. My mind knows all the positives of it, my heart keeps saying, are you sure this is the time? It is.
I have questions I want to ask.
I want to know if their service will disrupt our (my) support team in a good or a bad way.
I want to know if I can still continue to use the support system that I feel like I had to fight to put in place.
Direct contact with his Neuro, Mental Health and Primary care are a call away if I have concerns.
I know that we have reached the end of the line as far as meds and treatments are concerned so I'm not looking for a straw to grasp. I'm looking to keep the people I feel are helping me and Hubby, even in a limited way, through this journey.
I want to know if we will receive at least the same amount of aide time we are getting now.
If not, As frustrating as it can be, I'm wanting to keep our aide time even if it means renewing every 6 months and waiting weeks without an aide to get the renewal. 
Perhaps I'm afraid to make this step and I'm not realizing that is what the weight of my feelings are.
It's odd how something that I know is good can feel so bad.

Decision #2)
When Hubby learned about this appointment he was sure I was taking him back to respite.
The scene that followed when I told him went from 0 to 60 in angry milliseconds.
His verbally ugly and angry outburst caught me off guard.
I had to reassure him several times that I was not getting rid of him. Although he said he believes me, he still makes comments to the contrary at times.
SO, now I'm second guessing my decision to use respite care as long as he is at this level of awareness and this sensitive to the thought of going.
One day at a time. I live life much easier this way.

Decision  #3)
The night before last, Hubby took a hard fall in the bathroom. He had fallen and smacked the side of his head against the wall. I didn't see or feel any bumps and as hard as the fall sounded and the position he was in when I was finally able to get to him, I could tell he had hit it pretty hard.
It knocked him for a loop and it took a little while to get him off the floor but it took even longer to get him focused on me and answer my questions.
The main was, Do you need to go to the Dr?
No! Emphatically.
Hubby said he had a hard head.
I agreed and said his skull was hard too ;-)
The best I could do for him was get him comfortable and watch for signs of concussion.
I decided to respect his wishes not to call an ambulance.
I watched him closely and our night was very bad.
It was difficult to separate the fall issues with Lewy Body issues.
Lots of confusion, Lots of mobility issues, restless sleeping.
At one point he concerned me enough that I got afraid.
He was shaking uncontrollably.
Not a seizure, not like the last time, different.
I had finally drifted off to sleep close to 1:30 AM when I heard the hand bar chain.
I got up and went to Hubby's bed. He said he was cold and was shaking.
I checked for fever, none.
I covered him with a blanket besides the 2 he already had but he was still cold.
He continued to tell me he was cold so I draped by body on top of him and his blankets and held him tightly until his shaking subsided.
I didn't know what else to do.
When he settled I went back to bed.
About an hr later I heard the same noise and he was complaining about the same thing.
Again I draped him and held him tightly.
I got afraid, I prayed, a difficult prayer.
I asked that Hubby be given some peace, I prayed that my fear would go away.
And I prayed that if this was the time God intended to take Hubby, that I would be willing to surrender him.
Now that all sounds like it came out easily but I assure you, it did not come without hesitation, chastisement for myself for thinking that way and many tears.
Hubby settled down long enough that I felt comfortable to leave him and go back to bed.
I cat napped the remainder of the night waking to every sound.

Decision #4)
A week or so ago, the owner of the gym I attend had planned a gathering and I was invited.
I asked our son, Sonny Boy, to stay with his father so I could attend.
Sonny Boy agreed as it worked well with his work schedule and I was looking forward to a little time away.
The day (yesterday) finally arrived but it happened to be the day after Hubby's fall.
Hubby was out of it still.
He didn't remember falling and couldn't understand why his head hurt.
On many occasions he asked me why his head hurt.
He conversed little and slept all day. I even had to wake him to go to the bathroom.
Walking was gone, so wheelchair rides and physical assistance was necessary.
As the day moved on I wondered if I should go ahead with my plans.
All the what if's crowded my mind.
Hubby showed no improvement, but also no decline and I had to trust that Sonny Boy would be okay to stay, after all, he was capable and if he needed me all he had to do was call.
I decided to go.

Decision #5)
I am SO happy I did go!
What a relaxing couple of hours without thoughts of caregiving and errands that needed to be run.
I wasn't on a time schedule, other than my own.
I wonder how long it had been since I was able to do that.
I think 5 yrs!
I arrived and was happy to see many of the ladies I knew and met some new people.
I did realize I need to work on my social skills!
A display of food items and beverages was available and we all indulged in the spread.
It was a lovely evening, carefree and relaxing.
When I returned home, Hubby was still sleeping, I woke him to say hello.
Sonny Boy said he never moved while he was there.

Today Hubby is awake and alert. He slept all night.
His mobility, even as limited as it is, was back.

Yes, I believe I made the right decision in going.


  1. I am so glad that hubby was not hurt badly by his fall and that you enjoyed your time out. I wanted to leave a comment to let you know that I was still lurking in cyber space.

    Lots of prayers for you.

  2. So glad he is okay and you went ahead with your plans. It's so hard to know what to do. We are thinking it is time to go to the VA and get dh's name in the system. He would never use the benefits before, so I'll be interested to find out what you learn. Prayers going out for you. Bigs hugs.


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