Sunday, March 30, 2014

Website: NonPartisan Info Social Insurance including Long Term Care and Medicare

I'm constantly surfing the web and continuously surprised at what I find. Found this site that appears to be nonpartisan and not for profit and covers information on Social Security, Medicare, Worker's Compensation and Disability, Unemployment Insurance and Long Term Care.

Of particular interest to us are the areas of Medicare and Long Term Care as it applies to our current and future possible experiences but all these areas contain great information you'd have to go to several sites to retrieve in one convenient location. Published articles and citations including providers of support from various foundations in just a basic overview of the site leads me to believe this is a "gem" of a site for anyone who really wants in depth information, great overviews and insights and a constant resource for keeping up to date on what's happening in our society in areas we're all facing.

Admittedly, I've not explored this new site in depth I've connected at the end of this entry but from first impression see information that appears to be nonpartisan and nonbiased.

Also found selections very prevalent to my latest experience "volunteering" to participate in a study by a local Medical Facility/Educational Facility designed to "open discussion" or raise it to a higher level between the "older generation" in a family and the "children".  It's the article on "self determination" you can access through

Second admission, I'm not exactly "thrilled" with the questionnaires I've been receiving nor with the way in which the program is progressing. Some questions I consider too personal and would welcome answering them if they weren't "me" specific but rather asked if I "believed" this or that was necessary, needed or wanted.

BUT, it has opened additional conversations about "life plans" among the three of us who I feel, at this time, I want involved in "making decisions and choices" especially when I no longer have that ability.

Witnessing how my Mom, with Lewy Body Dementia, could easily change, almost from day to day, her "choices" about who should/could make decisions or who she would trust -- hence our major problem with Julia and the woman's ability to use Undue Influence and get her hands on cash in our home -- I'm concerned about that possibility occurring again and causing hardships especially for my daughter as it did for me, as my Mom's only daughter.

So, I continue to search, to research, to plan, to try to understand and to encourage others to do the same.

If we want to have "personal choice" and "personal determination" we must be proactive and start early in life, even earlier than I'm starting, to understand the laws, the possible changes we can effect and the affects of studies and relationships. If we're fortunate to move forward into "stages" of life, we should understand the role we can play in self determination and effective directives that will, even with significant challenges, continue to provide a safety net surrounding the individual -- if that is what we believe we have, "the right to self determination".

I notice many readers of this blog from countries that may not provide this "right" and look forward to the day when you can join in this decision.  I see others who live in countries we've seen as "more progressive" in providing choices and values for aging far beyond what we currently experience in the United States.

Conversations are welcome. We're still learning about blogs and how to make them more interactive and responsive. Now that our lives have changed to hopefully provide a little more "personal" time for "personal choices", we hope to progress with this blog to more interaction, more inclusion of resources and build greater awareness of not only Lewy Body Dementia but recognizing the choices we have when they're available and known.

In Mom's memory, we've determined to share our experiences with her Lewy Body Dementia, references to reliable and lesser known resources, like this website connection, and advisories on areas of life we seldom think about until we're in dire need of information.

Join us for A Continuing Celebration of Life journey.

Here's the site:  and here's a section I found particularly helpful regarding considerations most of us will have to make regarding care for ourselves or a loved one 


Friday, March 21, 2014

It's Friday and Mom's Passing Comes To Mind ... Again

Called the funeral parlor yesterday. Life got in the way and I'd not called back to re-request Mom's death certificate. Or was it having that final piece of paper in hand meant the passing of both my husband and my mother were factual. No denial. No setting aside. No pausing and thinking: "Have to go to the hospital" for him and "Have to go to the Nursing Home" for her.

Reality has set in. It's not something I dwell on. But as anyone who's lost a loved one will tell you, it's not a simple matter of "here today, gone tomorrow" acceptance and moving on almost as though nothing really happened.

It's a major life event and in my eyes and mind having gone through the death of one absent parent, my father, due to divorce and not seeing him for a long time, I believe the closer the relationship is, the harder the adjustment (if we call it that) is and the more it affects everything we do.

I'm strong, I tell myself. I'm a fighter. True. I've survived a great deal in life and am still in survival mode. But that was usually with one or both of these people in my life and even if I was upset with them, angry about something, disappointed or in any way feeling that relationship wasn't what I wanted or needed at the time, there was still a chance, THE chance, to go back, reconsider, restart, rewind -- with one or both of them. No more.

Mom passed on a Friday afternoon. I'm not sure I remember exactly what time. We'd stayed with her, in her room at "the facility", for two nights and were believing we faced the third and then saw great changes and a definite progression that meant Mom would soon be leaving this life.

The staff had finally moved her roommate, who was sleeping most of the time but still "present" and when awake often verbally and physically active and sometimes very negative and somewhat abusive to attendants. We made do with sleeping, daughter on a makeshift pallet on the floor and myself folding into the permanently reclining lift chair that had decided to quit working about a week before Mom passed.

Grateful not to be living through that time, again.

Looking back, thankful it was in January and not in March; Mom loved the Spring and looking forward to the flowers we had in the yard that would start blooming now and then climax in July with the bursting forth of the dozens of varied day lily plants of all sizes, shapes and colors we'd planted decades ago.

When she went into the facility, I made it a point to take her blooming plants when none were blooming outside and cuttings from the flowers we had blooming in the yard.

Even when she passed through the Lewy Body Dementia "stages" of not recognizing me or others, she still responded positively to the sight and smell of flowers. Now taking them to her is a major trip as her final wish was to be buried in a small cemetery in a town where she spent much of her childhood and close to the actual town where she was born. But I remember both Mom and my husband when the flowers bloom, when the snow comes and when so many other life joys return to remind me of past love and family.

Memories hurt. Memories heal. Time hurts and it heals. It's approaching three months for Mom and it's been a little over three years for my husband.  Mom said when he passed, "It should have been me." She was so much more aware then even though she was deep into the progression of Lewy Body Dementia. That roller coaster ride was in the beginning stages although as we discovered, the LBD was not in the early stages.

Each stage for Mom was very lengthy and the really visual and continual and non ability to return "on course" characteristic of what we did see and know as LBD and remember pre LBD hit a relatively quick and fast decline -- about two weeks for the real physical/mental total downhill journey without any return to a previous level.

Sometimes I feel those who discover LBD earlier are more fortunate and sometimes I feel they suffer even more knowing what lies ahead.

Would I want to know if I had LBD?  If it could be diagnosed when I was truly competent, I think I would. I'm far away from the time we think Mom started her actual battle with the disease but each day does move me closer in that direction. Lewy Body Dementia causes so much mistrust on the part of the person with the disease. That alone is frightening when thinking about the "self" and the possibility of having LBD. 

Trust is a basis of my life with my daughter; it was my Mom's basis of life as well. Will I follow in Mom's shoes or will I succumb to something else?  Is there ever a "good way" to pass through this life?  My husband thought his father was blessed; Dad died in his sleep. But what do we really know about the end......

Friday, March 14, 2014

Masks: Ever Changing Faces of Lewy Body Dementia

Cell phones are chronicles of life and for our journey with LBD, of death.  

How often we "put on a face" in life --- smile for the camera, see the surprise on someone's face, the love, the caring, the passing of time.

I just went through pictures of Mom on my phone with snapshots over the past year of her life. So many pictures of Mom "daydreaming"; with us, but appearing to be somewhere within her mind, sometimes briefly and sometimes deeply.

Her eye focus changed; I can see that now. Her facial expressions lessened; smiling and reacting to common daily actions faded, slowly at first and then after her last birthday, it was becoming evident she was losing the ability to remember common actions (she didn't understand how to take the wrapping paper off a present and then couldn't open the untaped box that held some new clothes).

Funny how you recall small memories: how Mom always tried to open packages with great care trying to "keep the paper intact to use again". A child of very little growing up and a young woman during the Depression, she taught us all how to "use it up, repair it, make do or do without"; lessons we found provided more in life than we'd ever expected.

I remember her ability to communicate and even seem to be cognizant to one degree or another up until about two weeks prior to her passing. No one prepares you for that.

My first entry was "When the Child Becomes The Mother" back on April 8,2013. 

I had no idea then it would be less than a year after that date Mom would leave this life. Looking back, reversing roles started long before that date with many adjustments to ensure her safety and personal well being.

Subtle messages of what was to come. Trying to survive, work, visit her every day we still didn't clearly see what was happening before our eyes.

LBD is a MASK like those worn during Carnival or Halloween.

It's often like those worn that have a stick someone puts in front of their face and then can remove it and you see the "real" person underneath.

Then it appears to be the kind that are put on and have a ribbon to tie in the back and you can remove or someone can help you remove it.

As time passes, the MASK becomes the type with the stretchable band around your head and it can be taken down part way or completely but with LBD it only goes down the front of your face and remains around the neck.

Then, the MASK changes completely and it's painted on the face; always there, always prominent.

Because we had no roadmap to guide us, no specifics as to this disease's progression in behaviours and observations, we were constantly guessing as to what to do, how to act, decisions to make to ensure we provided for and protected Mom -- from herself and often from the acts of others who simply did not care to find out about Lewy Body Dementia.

We took pictures and we took videos. At the time many were to understand and explain to my son, who couldn't be with us, how his Grandmother's actions and behaviours were on any given day.

Often, especially in the beginning of her "last" months, her ability to talk and "fake" responses through common comments and even through appropriate responses (son:  Love you Grandma! mom: Love you, too!) caused him to still question his grandmother's deteriorating health and the effects of the LBD.

We took pictures also to chronicle the numerous challenges we faced with Mom's Skilled Nursing Facility.

Highly recommend anyone with a loved one in a facility take advantage of this ability to chronicle and document what few people see, hear about or realize is happening. 

Even the most challenging situations can come and go and if you're fortunate enough to witness something, protect our Senior population by realizing this is one of the few ways we have to ensure and protect those we love.

Lewy Body Dementia doesn't just place masks on those whose bodies it invades, it puts masks on SNC staff and everyone who attends the men and women who live there.