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, April 21, 2012

Ours, Mine and His

Once upon a time, a long time ago...
In our world we lived on the schedule of the children and husband. 
Hubby lived on the schedule of his business and the business I told him he had with our children. (He had to be reminded)
In our world there was freedom to just go if something was needed from the store or we wanted to visit a friend or family.  The children were loaded in the car and away we went.
Every day at 3 :PM Hubby would gathered at a favorite place with friends for coffee.
Every Sunday and Wed we attended church.
Every Sunday afternoon was nap time, every Sunday night was "Fend for Yourself" or as others call it, leftover night.
There were school functions and social functions.
In our world, adapting to each other and teaching the children to live in and adapt to it, was just part of raising children, being married and being a family.
In our world there was freedom.

Then our world was divided in two by dementia.

It became My world and Hubby's world.

Our worlds mirror each other at times.
The same, but opposite.
Most days our worlds look nothing alike.
It is then I have to decide which world I will live in at the moment.

Our freedoms have slowly faded away.

Routine and schedule do not work well in Hubby's world.
Things need to progress at whatever pace he needs when he wants and needs it.
Routine and schedule have to be in my world.
The schedule of Hubby's Home health Aide (HHA) allows me to run errands and take a few mins to care for me in my workouts.

When appointments for Hubby are made, pulling him into my world takes some effort.
Preparation and time allowed needs to be made.
It isn't always easy to get him into my world.
I'm usually as exhausted as he is by the end of the day and we both fall back into our own worlds.

At the beginning of dementia, I tried so hard to get Hubby to live in my world.
I tugged and pulled at him but the gravity of Lewy Body was too strong.
We've had some wild rides because of it too. Many of those rides resulted in hurt feelings, anger, and tears, from both of us.
Logic and reasoning , for the most part, are gone in Hubby's world.
It's not like he forgot or misplaced something, it's just gone, stolen, dead, never to return.

Logic and reasoning are still alive in my world although there are times when I forget or choose, not to use them.
Dealing with Lewy takes a delicate balance to get between the worlds. Some days I do tire of the walk but I continue it.
Caregiving is not easy every day, but it's not hard every day either.
We laugh and some days are quite pleasant.
Even in very difficult times there can be a silver lining.
Hubby and I took a trip to lunch the other day.
Once we finished and I payed us out, Hubby said he wasn't feeling well.
Restaurant owner took charge of Hubby's wheelchair as I got the door and the two of us watched as Hubby had a mental and mobile meltdown. Hubby slumped in his chair and became semi unresponsive.
We approached the car and realized Hubby had to be physically lifted from his chair to the car seat.
This was actually a first in this situation for us.
Most meltdowns happen at home.
In order to move Hubby, I needed Hubby to help me help him by wrapping his arms around me.
First I had to get him to acknowledge that I was talking to him.
I had him look at me while I explained I needed him to hold on to me.
I had to repeat this a few times to get a response and move Hubby's arms onto me.
It was then Hubby said, "I'd rather hold on to you than anyone else."
I smiled at Hubby, held his face and kissed him, then lifted him into the car seat.
Restaurant owner helped tuck Hubby in and close the door while I loaded the chair.
He was very kind and compassionate and I thanked him as I got inside the car and buckled Hubby up.
When we got home I got him inside and in bed and I sat on the floor by his bed with my head on his chest.
He put his arm on me.

30 years ago when Hubby and I decided we wanted a life together, I wanted to be a better person for him and for me. I still strive for that daily, for him, because of him and lots of times, in spite of him. I fall short so many times but my faith in Jesus and my relationship with Him keep me moving on to the next day, to continue to love, and forgive not just Hubby, but myself and others and most of all Lewy as odd as that sounds. I have learned so much because of Lewy and instead of staying angry and bitter towards something I can not control and have done everything I can in my own power to change or fix I have learned to accept it, as much as I dislike it, for Hubby's sake as well as mine. 

I have learned that I can't force Hubby to live in and adjust to my world without backlash, so I have to visit his world in order to be a better caregiver for him I MUST bridge the two and step into his more.
Am I missing out on anything, maybe. Maybe I'm not experiencing "life to it's fullest" in the eyes of others.
But this is Hubby's fullest now and not only am I experiencing it, I'm getting to contribute to it.

Statistically I will outlive Hubby.
My life hasn't ended in my caregiving role.
I will move forward when Hubby passes on. I have no idea where or exactly how. But that's not today's decision.
I will not say what I chose to do was in vain.
I will not have regrets that I "missed out on life"
I will not feel like I sacrificed everything even though I have given up, willingly and sometimes reluctantly, a lot of things to stay here.  
I will rejoice that I didn't miss out on Hubby's life and appreciate and treasure the time we do have. As limited in freedom as it is. I still have the freedom to love Hubby anytime I want to, and I do.


  1. You're so amazing, Kathy. What else can I say?

    Thanks for being an inspiration!

  2. Kathy, you have written beautifully here what others such as myself are experiencing. And we have the same LORD who is there for us. Just as the LORD wants us to be WITH Him, our husbands want us to be WITH them. We can't emotionally withdraw from their world. We have to be WITH themm for better for worse, in sickness and in health. I love what he said to you and how you are by his side.

    Hugs and prayers,

  3. What a beautiful, bittersweet testament to what marriage is all about. You are definitely an angel!

  4. This is so beautiful. Makes me want to try harder and be a better person. It reminds me our world is different and we have to adapt. What a sweet caregiver and wife you are. God bless you.


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