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.

Tuesday, February 9, 2010


Not Hubby, me.

Hubby had a visitor! A friend came by to visit. YAY for Hubby!! We have known Friend for many years. Hubby knows him much better than I do. It was good to see him for Hubby's sake. He and Hubby have had their ups and downs over the years but they are at least more than acquaintances. We were sad to learn Friend has had some very serious health problems that even required a long hospital stay. Since Hubby's illness he has lost contact with so many people he has known. Many have fell by the wayside or just dropped out of sight. Some have even passed away. Hubby has mostly forgotten how to dial the phone, or "this piece of junk" as he fondly refers to it, and never asks to call anyone. For various reasons I never take it upon myself to contact the people he knows just to check up with them. I myself have a community of friends I stay in contact with via internet. My friends and our friends. Without them I would be lost. They are my legion of laughs, sounding boards and prayer warriors.

So why the snit? Friend was shocked to see how much Hubby had declined. Actually Friend didn't think there was anything really wrong with Hubby until yesterday. When he saw it for himself. I left Friend and Hubby alone to visit but it wasn't long before Friend asked me to join them. I think Friend was a little uncomfortable. Hubby wasn't too engaging in the conversation but did recognize Friend and was happy to see him. Friend can be a little, what's a good word here?... boisterous. If it weren't for my northern upbringing I would probably have been terribly hurt by Friend's comments about some things but I was born with a fairly sharp wit and learned a sarcastic humor that can be to my advantage and to my disadvantage.

Back to my snit. Friend wrapped up his visit with Hubby and as he was leaving looked at me and said. "You take good care of him." I answered that I was already doing that. Friend nodded and grabbed Hubby and me for a hug.
After Friend left Hubby and I said it was nice he came. Hubby was tired and went to bed where he stayed the rest of the day. I had plenty of time to watch the snow fall and fall and fall and fall, did I mention we had snow fall? I do not like snow. Arkansas should only have snow on the grass. I knew we were in for another snow in and it had arrived earlier than expected so Hubby's aide was unable to come and I was unable to make a trip to the store. Once again we were snowed in. Hope the cats don't run out of food.

Today I spend the better part of the day trying to shovel the driveway. The aide can't make it again and I doubt she will be able to get down our driveway tomorrow so here I sit tonight tired and sore and mulling those words over in my head. "You take good care of him" (So much for my northern upbringing tonight.)

Wasn't it apparent that he was safe, clean, and tended to?
When you offered to take him for coffee sometime didn't my concern for you to watch out for him as he is unstable  give you a hint I was concerned.
I've only been care giving 24 hrs a day 7 days a week, less whatever time I feel blessed to have for running errands. But then I am still care giving because my time is so short and he is ever on the forefront of my mind. My number readily available should I need to be called and willing to drop everything on the spur of the moment to get to him.
I have only been doing this for a couple of years now and have made so many adjustments to our home for his convenience  and safety. You saw those in the house tour.
I have prepared the same meals over and over again because he gets whatever he wants and I'm happy to do it.
I make as much sense as I possibly can out of complete nonsense so he won't get terribly distressed trying to communicate. And I interpret for others and give simple choices so he can still make decisions
I have been rudely and harshly awakened in the night time hours due to REM sleep disorder that I try to avoid or let calm itself or I lull back to gentleness.
I have learned and am learning a way of helping him maintain as much of his dignity as I can possibly preserve. I do my best to talk to him and encourage him.
I make the extra effort to remain calm when he does something he knows he can't yet insists on doing it, leaving me a mess to clean.
I stay as close to him as I can in the event he needs me I am right here.
I bought a monitor so I can still take care of outside things and all he has to do is call for me to come, I will and do.
I have picked him up from the floor and talked him through getting up from the floor.
I have surveyed him for damage and tended wounds.
I have assisted with personal hygiene and dressing. Helping and just out and out doing.
I have assured him there are no others in the house and even demanded that there better not be as I was in my pajamas. (They didn't stick around)
I carry depends in my purse and bring the walker or wheelchair "Just in case'" and we always have the case.
I remind him he is loved and that I am here to take care of him even though he doesn't really know who I am.
I will drive him to the ends of the world if he just wanted to go.
I love him.

So yes, I AM taking good care of him. But would it hurt to say, "Take good care of yourself"
Sometimes a small comment like that can mean so much. 

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