I HIGHLY Recommend ~ “Gone from My Sight” on YouTube

I believe everyone who takes the time to watch this video will have a better understanding of the natural process of dying. I am so thankful that I happened upon it. A friend came by and asked what I was watching and I said a video on dying. Which sounds so morbid and taboo. After watching it, I realize this information is not something to fear; it has changed the way I look at death and dying.

It is a gift to know how to recognize & help someone who is dying. I can’t thank Barbara Karnes enough for this gift.
Her book “Gone from my Sight – The Dying Experience” can also be downloaded if you Google the title. I haven’t read it yet but I imagine it will also be a great resource.


As the video is Barbara conducting a seminar, you really don’t have to find the time to sit and watch it ~ just listen…like a book on tape.

UNFORTUNATELY… IT LOOKS LIKE THIS AMAZING VIDEO IS NO LONG AVAILABLE ON YOUTUBE. Sorry. You could try googling Barbara Karnes for videos and books available on her website.

From MayoClinic :Acting out dreams linked to LBD

The Mayo Clinic is doing amazing research in patients with Lewy Body Dementia as this video explains….

http://newsblog.mayoclinic.org/2013/03/19/acting-out-dreams-linked-to-development-of-dementia/ | Acting out #dreams linked to development of #dementia, @MayoClinic researchers show at #AANAM:

LBD & Hallucinations “…are YOU real?”

Everything I have read about hallucinations experienced by people with Lewy Body Dementia has said that they generally see people and animals and do not usually feel fear or threatened by what they see. That use to be true for my Mom but things seem to be changing.  Lately she has been seeing people in her home… her deceased parents and others who come and go. It is the “others” that are cause for concern. Dad called me one night so Mom could talk to me when she was overcome with fear. She was seeing a man in her apartment and was sure he wanted to “take her out”. No amount of reassurance from Dad or myself could convince her that she was safe. She was completely terrified and crying uncontrollably. By the time I got to their home she had begun to calm down and talk about it. It was only then that she realized there was no one there but the 3 of us.

Has anyone had a similar experience? Does anyone have any advice on how they were able to convince their loved one that what they are seeing is not real or harmful?

I can’t even imagine how scary these experiences must be for my Mom. The last time Dad was dealing with this and trying to help Mom understand she was safe, her response was…“are YOU real?”

Montessori for Seniors

Excellent idea, I hope this idea catches on and expands for those with Lewy Body Dementia and their special needs. Specifically their inability to read and difficulty with spacial sense.

Across the Divide

In my earlier post today about the similarities between people with dementia and very young children, I briefly mentioned Montessori methods as being good for both age groups. The following video shows how one retirement home in Toronto uses Montessori techniques as part of its dementia care programming.

When my son was two, he was given the same clothes pin exercise while attending a Montessori. It helped with his fine motor skills

The L’Chaim Retirement Home is on Sheppard Ave. west of Bathurst St. I’m not familiar with it, but might have to check it out for my mother.

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Life on Mom’s Lane With Lewy

As of March 12th Mom has been in Long Term Care for one month. We didn’t expect it would be easy by any means but this is beyond what I could have imagined. You can anticipate many scenarios but not the emotional rollercoaster that will come with it. I can’t speak for my Dad, but you just have to look at him to see the toll this has taken on him. I can see that he wants nothing more than to do the best he can for Mom and even gave another try at having her at home again. The sad truth is that she doesn’t belong at either. She still has many “in” times that make you want to take her home. But then you see her so confused and know that she requires too much care to live at home again. What a heart wrenching dilemma with no right answer.

There is so much information out there about how to handle dementia sufferers but it doesn’t really prepare you for what reality serves up. How can it? You can’t paint everyone with the same brush any more than you can use the same strategies on all children. People are individuals with their own history which colours their present experiences. I’m lost, sad, scared, frustrated and angry at this ruthless disease that has stolen my mother from us (and all the other countless people watching their loved one fade away). You can see it in their eyes. I can’t really explain that but I’m sure I’m not the only one that will tell you that.

I am also angry that in this day and age we haven’t come up with a better plan to care for people living with dementia. The more I see the more questions I have. There must be a better way!

As a small example, I will share the events of Sunday:
I went to see mom at lunch time to sit and have lunch with her. (Yesterday one of the ladies that normally sits at her table passed away. She was a beautiful woman, traveled the world and was still able to talk about it. She and mom could talk to each other, where as the others at the table are unable.) As I was on my way in, I ran into a man that told me that Mom has been upset and looking for her husband and daughter. He said she was standing on the window ledge and banging on the window yelling. He helped her down and tried to calm her. I thanked him and went in afraid of what I was going to find. Mom was in the dining room but told the staff she didn’t want to eat. I greeted her and she immediately took my hand and told me we had to hurry up and she took me to her room. She had packed her loose belongings in the basket of her walker and said I was taking her to her husband. I tried to stall in hopes that it would pass. (compassionate fibbing, diversion, etc) No one trains you in how best to deal with these situations. We are told the staff are fully trained and the ones in this locked area have special training with dementia … Anyway we dance around the subject (mom is not giving in & she has lots of ideas for me on getting out) But I am finally able to convince her to go down to the lounge at the end of the hall where we can see him come in. He said he was coming so he’ll be here. I don’t really have a plan here other than hope I can somehow engage her in a conversation and distract her long enough to forget her mission. She was in such a state she had no plans of talking or doing anything but getting out. So I don’t know what else to do but call Dad. I was hoping for a nice visit with Mom and let Dad get some much needed rest. I tell her I’ll find out if he’s on his way cuz we don’t want to miss him. Help…someone please. Can’t anyone hear me screaming in my head? I do get ahold of Dad. He’s going to come right away. I feel horrible for calling Dad over, shouldn’t I be able to handle this? And then, as we are waiting she starts to get teary and says…”Did you know they want me to stay here for the rest of my life?” I was dumbfounded. (It certainly gave me the answer as to why she was in such a panicked state) How do I respond? It broke my heart. Thankfully I escaped having to respond because Dad walked in the door and she got up to go to him for a hug and a kiss.

I don’t have any idea as to what the answer is for people living with dementia…all I know is….there has to be a better way!

If you’ve made it to the end of this long post, I thank you for reading it.





Courtesy of Lewy Body Dementia Association
For more info: http://www.lbda.org

Next …. continued Finding In-home Caregivers, Care For The Caregiver & Support Groups




Courtesy of Lewy Body Dementia Association
For more info: http://www.lbda.org

Next …. continued Managing Sleep Problems/Sundowning, Smoothing The Transition On Moving Day & Finding In-Home Caregivers


Mom is back in the hospital and we are back trying to raise awareness for Lewy Body Dementia especially within these walls. It seems that even healthcare professionals will tell you they know about it, but in fact they are really just lumping all dementias together. A very dangerous practice considering the possibility of drug interactions for LBD sufferers, which could be fatal. (see Dec. 10th post) Dad decided it was time to shake things up a bit and get people interested and talking about LBD. He came to the hospital in the morning wearing this billboard. It shook things up all right. A visit from 2 security guards and 2 hospital administrators. The outcome…once they understood what exactly it was that Dad was trying to do, they commended his efforts. I think it has come down to radical efforts for radical change! Way to go Dad!