I am currently reading A Dignified Life by Virginia Bell and David Troxel. My intention was to finish the book before I recommended it here, but I am finding it such a good resource that I wanted to share it now as I know it will help many others who are looking for answers.
Ten years ago, the first edition of A Dignified Life changed the way the caregiving community approached Alzheimer’s disease by showing caregivers how to act as a Best Friend to the person, finding positive ways to interact even as mental abilities declined. Firmly grounded in the latest knowledge about the progression and treatment of dementia, this expanded edition offers a wealth of immediately usable tips and new problem-solving advice. It incorporates practical ideas for therapeutic activities—including the latest brain-fitness exercises—stimulate the brain while adding structure, meaning, and context to daily routines. With new stories and examples as well as an updated resources section, A Dignified Life, Revised and Expanded gives caregivers the support and advice they need to be successful and inspired in their demanding roles.
See more at: hcibooks.com – A Dignified Life
or their website at: Best Friends Approach
Following are two links to life support options for people with serious illness and facing death.
Understanding the options that may be presented to you or your loved one is easier if you have the information ahead of time…when there is less chance for emotions to drive the decision.
PBS.org Frontline-facing death gives the reader guides to “Kinds of Life-Support Decisions” (Ventilators, Nutrition and Hydration, “Do Not Resuscitate” (DNR) Orders) Including: “What to Know About Dying With Dementia” and “Family Conflict and Dementia”.
Eating and Not Eating as end of life approaches by Barbara Karnes, RN, end of life educator. Her web site has tons of valuable information on matters concerning the dying process (and see the video I have previously shared from Barbara Karnes).
Last Friday was my birthday and I know Mom would have come to see me if she were able. So I decided to go to her instead. I was feeling very emotional … a real need to have a hug or some sort of interaction with her to feel her love for me again. As I sat with her, that emotion only grew as did the sadness for the condition she is in… eyes closed, resting in a chair in a hallway with residents passing by or stopping to chat with me. I wanted some privacy with my Mom. After much consideration, I finally got the courage to sit close enough that I could put my head on her shoulder. I thought it might make me feel better somehow, but instead I felt foolish and disappointed; without a response from Mom it was pointless. So, I just sat with her and held her hands and pondered this very sad situation. It occurred to me that as difficult as this is for me, as a daughter, I can’t imagine how it must feel to be a spouse of someone with dementia. I have read a lot of articles on caregivers but they rarely address this issue. The article I have linked here titled ” Till Dementia Do Us Part: Alzheimer’s Caregivers” from AARP gives a glimpse into how it feels to be that spouse and how some people are dealing with it. I know some will agree and some will not, but I don’t think anyone can judge a person in this predicament unless they have spent every day of every year going through what they have… and I wouldn’t wish that fate on anyone!
Here is a short video from my visit~
2015 My Birthday Visit: http://youtu.be/CA1GpildmIg
Click the link below to read Lewy Body Dementia Association’s article.
LBDA comments on Robin Williams.
It seems so long ago that we saw changes in Mom that were concerning enough to seek a diagnosis and help from her doctor. But in thinking back prior to when we realized this was more than just “normal aging” there were small signs that could easily be justified away…and were. Symptoms fluctuate in the beginning which I believe must make it more confusing for that person. I also think it’s human nature to preserve our dignity and not admit there is a problem. (That is why I believe the stigma attached to dementia needs to end. It is a terminal illness.) There came a day that Mom broke down and admitted that she just couldn’t take pretending anymore. It was taking too much energy. According to her specialist in the field of LBD it is not uncommon for someone who is very social and good at reading people via expression or body language to hide their symptoms by using all of the skills they have to do it. Mom was a master. That is, until it became too much. No one knows what was going on inside the mind of Robin Williams. Personally, I believe it possibly could have played a part in his decision to end his life…but we will never know. Regardless, it is a very sad loss. He was a truly talented actor and gave us so many wonderful movies to warm our hearts and make us smile.
Rest in Peace Robin Williams
Bathing a patient with dementia/Alzheimer’s: http://youtu.be/IxwJgDg3bYU
These simple tips may reduce stress and anxiety at bath time for your loved one as well as the caregiver. I wonder how many facilities use these strategies?
Great advice when you become a caregiver.
It’s amazing to me how someone that is usually unresponsive can be “brought to life” with things like music or validation therapy (as this video shows). Recently my daughter and I visited Mom with my 2 1/2 year old grandson. We were shocked when Mom spoke to him with complete clarity and playfulness. When he spoke, Mom would turn her head to him and respond, something she rarely did when we spoke to her. How is this possible? Does his little voice bring her back to her early days as a Mom? Is that an area of her brain that has not been affected yet? What else could we do that will bring Mom to life again, even if only for a few minutes. Is she able to understand more on a daily basis than we think she can just because she cannot find the words to form sentences that make sense. Is she afraid and frustrated because no one understands her? I truly wish there was a way to read Mom’s thoughts so I could give her what she needs or may be longing for. It’s scary to think we really don’t know what life is like for her or how she sees the world around her. Are there times when she knows she is living in a locked facility full of strangers and left wondering where her family is? Without the answers, these questions continue to invade my thoughts and break my heart for Mom.
Mama Jean’s mind was already gone, but her reflexes — the ones that declared, “Don’t mess with me, I’m in charge,” — were still firing. It was the kind of moment — a brilliant spark of lucidity — that crystalizes the essence of a person after their mind has been hijacked.
Open, honest, heartfelt article. Click the above link to read more.
I was in tears before I finished reading this article because of the similarities with our experience with Mom. I still find it difficult to understand how it is that the medical community does not know more about Lewy Body Dementia and how to recognize it.
I find myself missing my mom more now when we are together than in the past when we were apart. The sadness and grief are overwhelming.
I hope beyond hope that the author, Jamie Brickhouse, is correct in thinking Casey Kasem will give a face to LBD and therefore the much needed awareness.
♥We are all just walking each other home♥
From the LBD Association. Click on this link to read the page…
♥We are all just walking each other home♥