Watch “Gladys Wilson and Naomi Feil” on YouTube

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.

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Watch this video to see how music benefits those with dementia…AMAZING

http://m.youtube.com/watch?v=fyZQf0p73QM

I watched this over a year ago and we tried it with mom a number of times but she didn’t want to keep the headphones on. Two weeks ago we decided to give it another try. It worked like a charm!

♥We are all just walking each other home♥

Casey Kasem and Mama Jean: The Faces of Lewy Body Dementia | Jamie Brickhouse

http://www.huffingtonpost.com/jamie-brickhouse/lewy-body-dementia-casey-kasem_b_5343758.html?utm_hp_ref=entertainment&ir=Entertainment

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♥

Watch “R.O.S . Therapy Systems” on YouTube

R.O.S. on WGHP 2013: http://youtu.be/rYPGtiDD-1Q

I wish I had come across these products before Mom’s vision deteriorated to the point these activities would be too difficult for her. Such a fanatic idea with so many benefits. Check out the website at https://www.rostherapysystems.com/

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Improving Quality of Life through Activities and Entertainment

Built from a backyard project to help one man enjoy life during his 25 year battle with Parkinson’s Disease and Dementia,  R.O.S. Therapy Systems has grown into a company with a complete package offering of How To Training, Activity Products and Activity E-Products for seniors and their caregivers throughout North America.

  

♥We are all just walking each other home♥

Elder Care, Senior Care and In-Home Care for Seniors & Adults – Comfort Keepers – Canada

http://comfortkeepers.ca/

This company seems to have to right idea when it comes to caring for someone in their own home. If you are in need of this type of service, click the link above and check them out. They have offices across Canada and this may be just what you are looking for. They say they even have staff trained specifically in the care of people with dementia. I have not used their service but l sure like what they appear to be offering.

♥We are all just walking each other home♥

Caregiver, family & friends …Grief & Beyond.

It is called “grief”, but I believe that what I feel, watching my Mom slowly slipping away, goes beyond that.

Mom is now in the late stages of Lewy Body Dementia and I am constantly searching for ways to improve the quality of her life. I have come across suggestions like the use of dim lighting, soft music and a calm quiet environment.  But how do you accomplish that in an institution?  Mom has been extremely bothered by loud talking or noise for a couple of years now, but there are residents that can’t help the behaviors that afflict them…tapping, clapping, chanting, singing, etc. All I keep thinking is that there must be a better way for these people to live out the rest of their days with some privacy, dignity and personal care that more resembles how they would look after themselves if they were capable.  My parents taught me to empathize with others, put yourself in their shoes. I do that with Mom trying to figure out how she sees the world and if there is something I’m overlooking that could make a difference in her world. But right now I am at a loss.

I have done a lot of reading about dementia, caregivers, caregiver stress, how to best look after your loved one with dementia and the importance of looking after yourself.  But what seems to be left out of many articles, is how this disease will make you feel.  The effect it will have on your mind, your heart and your soul.  Sometimes the sadness, helplessness and grief I feel is so deep that it seems to be in a place I didn’t know existed.  Deep in the depths of my soul … the core of my being. Where there are no answers, no one to make the hurt stop, a bottomless pit.  It is an endlessly dark, lonely, confusing place. No one seems to talk about the fact that you may be so busy caring for and trying to figure out each change in behavior of your loved one that these feeling can build up slowly, sneaking in, until one day they find their way to that place… deep within you.  And even if you are able to escape briefly,  you know it’s there and the wave of emotion will hit you again and again and again…like when you are alone or see a reminder of the person they once were or walking out to your car after a visit.  Mom looks like my Mom and my mind tells me she should act and react in the same way she had in the past. But what my mind expects and what actually takes place couldn’t be further from each other. It doesn’t make sense in my mind.

There just isn’t enough known about this disease. We do know, without a doubt, that it is cruel and relentless whether we choose to accept it or not. And how can we accept it? Acceptance is suppose to come after we feel we have done everything we can…and we let go. To me acceptance feels like I am giving up on my Mom and I am not ready to stop looking for answers. 

I have also been reading about grief.   According to Paula Spencer Scott http://www.caring.com/articles/anticipatory-grief-coping-with-special-caregiver-stress
….The friends and family of someone with dementia experience two difficult psychological states at once… Anticipatory grief (coping with the very real feelings of loss for someone who is still alive) and Ambiguous loss (interacting with someone who’s not fully present socially or psychologically). Although there is truth to both of these, I personally feel neither come close to describing how some caregivers, family or friends feel in this situation. This roller coaster of emotion can be seen in the eyes of other families visiting their loved one. The knowing glance of compassion for your similar situations. Why does the depth of these emotions seem like such a well kept secret.

The word grief makes me think of death, not of what a person may experience living with the slow loss of a person who is still a part of their life. Upon death, those left behind start the grieving process. With dementia you grieve every day and then it continues in a different way after that person passes. I think a new word needs to be invented to properly describe what we are going through and more information needs to be available to help prepare the families of those with dementia.

I will use words from the TV show “Grey’s Anatomy” because I feel it is very well said…
“Grief may be something we all have in common but it looks different on everyone. It isn’t just death we have to grieve. It’s life… it’s loss… it’s change. The worst part of grief, is that you can’t control it. The best we can do is try to let ourselves feel it when it comes… And let it go when we can. The very worst part is the minute you think you’re past it, it starts all over again. And always, every time… It takes your breath away.”

♥We are all just walking each other home♥