Expressing Love in Early Stage LBD

I believe that knowing the depth of John’s love for me and mine for him has helped so very much in coping with the early stage of LBD. Saying we love each other, and acting out our love for each other in many ways throughout the day, while that option is available for both of us, builds a storehouse for future use. John may someday not be able to express that love or even feel it for me.
One of the strange gifts that can come with LBD and other degenerative neurological diseases is the keen awareness of the preciousness of each day. Our time together is not taken for granted. It is cherished. We consciously make memories together and their worth is appreciated.
Because I am a more extroverted and outspoken, strong woman, and John is more quiet and easy going, I knew that I needed to develop some specific ways to talk to him when he needs to be motivated to get up out of the recliner and turn off the TV.
I was presented with a dilemma when the neurologist and the counselor gave what appeared to be conflicting directions to me. The neurologist said at our last appointment, “Be a drill sergeant. No guilt. Do what you have to do to get him moving. He will lose it if he does not use it.”
But the counselor had said, “Be soft in your words. Be vulnerable.”
So how was I to pull off both at the same time?
I asked Dr. Ledford, the psychologist, for some specific words to say to John to help me with this. He gave me these ways to soften my words when I see John getting into an introverted rut:
“Let’s go for a ride” (when John is too passive or watching too much TV).
“I’m probably being a little crazy here, but…”
“I may be worrying too much here, but…”
“I know I’m being the drill sergeant here, but…”
“I don’t want you to feel criticized or pushed, so let me know if I make you feel that way.”
This way I am addressing the problem with a softer, but firm approach to get John to do what will help him to stay more active. It feels like a good example of loving him.
I have also become bolder about expressing exactly what I want emotionally from John. If I need to be held or told that I am loved, I make that plain and clear. John has learned over time with the help of our counselor to respond well to that.
We are both conscious at this stage of the disease just how important it is to build strong, loving memories.

1. Figure out how to express love to each other in the way the hearer can understand and receive it. Do this early and often.
2. Get counseling to help you learn to better communicate and find peace.

Good morning! What a fun subject, Ken and I have always shared hugs and touches as we pass each other all day long. He isn't able to initiate that anymore, but I will make the caregiver hold him in place while standing and I still give him at least one big hug every day, and lots of kisses. I know it doesn't hurt him and it sure helps me! Pat, your writing is wonderful, thank you again. Sher

Thank you for the super encouragement!
Hopefully, just writing and reading about loving each other will generate more of it in all of our homes. There just cannot be too much love, can there? It is a source of so much good energy.
Hugs to all,
PatS

wonderful subject... and thanks !!!

when we went to the doc last week i forgot to mention on here that the trazadone had made such an improvement, not only in the sleep and the hallucinations department..but in his sprit.. after all he has gone thru this past two year, with his life as he knew it ripped out from under him and his ablitiy to come and go as he pleased.. he was in a depression.. the trazadone has so helped with that.. and now when i sugggest going and doing, he is more than willing to go and also partake.. he hasnt been sitting in a week.. busy doing little things..
makes us both happier campers!!
cindi

Cindi, that is so good!!!
How long ago was your hubby diagnosed?
John was in June 2007, but symptoms came and went well before that.
PatS

he was diagonosed with possible alzhiemers 2 years ago.. altho ive been noticing something for about 8 years, before that.. years ago.. after last week they still think its alzhiemers.. just more developed..but they still have questions on the lewy.. because of certain traits that are showing up.... so hoping to stay informed, so i can be aware when going to the doc and be able to answer the questions, so they can hopefully make a decision...
thanks for asking pat..

Cindi, I noticed that you joined this forum just recently. Do you mind sharing what the other symptoms are that are making doctors wonder about LBD?
I would assume that Irene Selak (or someone else on this forum) may know doctors in your area who might be really good at diagnosing these things more accurately. Finding that kind of doctor can make a HUGE difference in treatments offerred as well.
The good news, if it is LBD, is that many of the meds for alzheimers and/or parkinsons can actually work better for LBD patients. Hearing that from John's neurologist made us have so much more hope. (By the way, he is our third neurologist in the journey. It took that much to find the right one, and we are so happy we kept looking.)
Also, if your husband is in the early stage of LBD, you might want to read several of my past posts on this forum to see what has worked for us in the early stages to extend it for as long as possible. All my posts concern early stage LBD.