Saturday, June 24, 2023

Logic and Reasoning Missing With Medical Personnel

Written on November 13 2020; posted June 24, 2023 -- 

Why so long to publish? Honestly I felt like no one was really listening. It's important to raise awareness, share the times spent, including the challenges which were so prevalent.

I realized through all my involvement raising awareness of all Dementias that Lewy Body Dementia needs more professionals to get behind this type of Dementia and share their personal knowledge and experience.

Life has seasons, each more beautiful than the other with some bringing times of unrest and challenges. 

It's Autumn outside and inside today. Trees are almost bare of leaves. 

Just yesterday, figuratively speaking, the bright colors burst forth and cast a colorful glow all around outshining the colorful birds at our feeder and the late Summer flowers still blooming far past their usual time.

Some would say it's the Winter of life when we grow older and begin those years most describe as "downhill all the way" but I believe Winter is closer to the end and I've just started another new beginning.

Gifts in life appear and disappear; some are tangible, others are whisps of air drifting or floating past. 

We decide the road we travel with each day that passes.

Amazing gift this Summer. So needed with COVID-19 wrecking havoc all around.

A positive that began with a strong negative, lots of concern and a little fear.

June 1, 2020. Took a break from being in front of the computer trying to get through another day of uncertainty about life in general and managing to keep trying to understand which of the directions is the "right" one -- at least for now.

ADDENDUM:  It's June 2023. Not quite three years later. I decided to become more active advocating for Seniors and especially those with Dementia and other challenges several years ago. Accomplished some steps forward and plan to continue to find ways to share and work towards better lives for our Seniors.

I've attended many conferences especially those put on by the Ombudsman organization (each State is required to have one by Federal Law but there are still a couple of States that appear not to have followed this directive). 

I've gone to our State Capitol to talk with Legislators about upcoming opportunities to assist our Senior population. 

I'm planning a trip to Pittsburgh in July 2023 for a special conference on aging and changes in how people from many countries are stepping up to acknowledge "Elders" wants and needs, not just what society thinks they should have.

COVID is "over" although there are still updates on "new" shots so doesn't this mean there's still a challenge?

Ironically I did not get it but my Millenial daughter did. However, I think a couple of weeks ago we were once again "visited" by either this challenge or certainly something mimicking COVID. Glad we were both fully up to date on our Inoculations.

After a trip East, made to attend a funeral of a family member, within a day of returning home, I became very dizzy and weak. For the first time in several years, I asked to be taken to a local Urgent Care facility we'd once tried. 

Disappointment in the medical facility. Three "medical people" each tried to convince me to take significant testing inolving MRI's and other equipment.

Know it was because of my age and "risk factor" and my vitals were "up" quite a bit. But the cost, even at this supposedly less expensive medical facility was still in the four figures range and probably five figure if I'd had them all.

However, reason told me this was something I'd "caught" during the participation in the very large funeral and wake with so many "unknown" people -- and we've gone back to "hugging" and "touching". 

Shortening the story -- within 24 hours my Millenial daughter was as sick as I was. It was helpful I was one day ahead because even though I was really, really, sick, I could help her to get what she needed. Apparently some kind of "virus" in Pittsburgh decided to travel back with us.

Although I wasn't "applauding" her challenges, I felt verified for my belief, as someone who has a genetic history of strong, long lived women in my mother and grandmother, it was related to our trip and socializing with people who we didn't know and haven't seen before or for a very long time.

We might believe "it's gone" -- but viruses and COVID have a tendency to continue to "adapt" and "change" and we must consider this as we move forward. 

Doctor finally provided a prescription for a general antibiotic -- but he'd sent the other two "different" staff members in again to either evaluate or try to convince me to take the tests.

Do not suggest YOU make your decisions based on mine. Just recounting how important it is to know your own body.

IT'S THE SAME FOR LEWY BODY DEMENTIA.  The person may have some or all "features" of the medical challenge but there can still be a "part" of them that needs to be heard, to try to understand where they are and what "they" need and "want".

AGEISM is strong in our society. Categorizing someone physically, emotionally or otherwise can be a mistake. 

We need to ask more questions related to the situation and then consider ALL the possibilities whether a professional, or someone without certifications and degrees.

LISTEN. ASK. THINK. People deserve to be treated not by the years they've achieved but by respecting their choices.

Sunday, June 18, 2023

Father's Day 2023; Wish You Were Near

I'm always amazed when people, especially men, ask me why I didn't marry again after my husband passed as I wasn't "that old" AND "life goes on".

To be honest, I'd found my life's love at 18 and a freshman in college and although perhaps he wasn't as certain as I was, and it took him four plus years and an ultimatum, to move down the aisle, we were meant to be, bringing two sons and finally a daughter into the world, now grown and two with some very "grown children" of their own. 

We met when I was a Freshman and he a second semester Sophomore. He was four years older, had left college, entered the Air Force and then became a member of the Air Force Reserve. It was a time of conflict in another part of the world. He served in Forward Air Control and continued in Reserve Service even after we married.

We had hardships and celebrations -- typical life together. 

We experienced journeys and challenges, always together and always looking onward and ahead of those times to what could be ahead.

Know not everyone can turn the pages in the book of life and see past the challenges, the downturns, the trying times physically and emotionally, to see creating a life together was a craft, a skillset you work together on to start and . . . to finish.

The "hole" has become the "whole" as it's been more than a decade with many life's challenges and changes -- just as "we'd" experienced before "I" experience as "me" rather than "we".

Learned a lot. Forgot a lot. Set aside and reached for more of some.

Memories of past Father's Days spent with your Dad and other family members -- and your Grandfather who we had with us and we introduced to our first child, his great grandchild -- he left us many years ago and his son, your father, went before you by a decade.

Family gatherings. Laughter. Joy. Sharing and caring. What happened to the real meaning of family where people admitted their mistakes and talked through the challenges and the heartaches caused?

Perhaps the difference was . . .  "we" . . . moving down the road to replace those who went before, felt an obligation towards them, while some of our children feel a need to "replace" rather than add to family structure.

Thunder outside. Rain earlier. Watched the geese on the lake. Told the cat it wasn't a good time to go outside and play, as she so loves, in the fenced garden. 

The tree from the sapling, so slender and short, now towers above us and our arms are not able to join two people around its trunk as we could just a few years ago -- or so it seems.  

Your father cut off a three foot long scrawny limb, put it in water, we watched it start roots, and I marveled at its strength, beauty and tenaciousness as we'd seen the "parent" tree survive one of the worst local tornadoes that came through our metro area a few years before our marriage.

Do I still think of you? Yes, often. 

When there is parting it simply means a part of you changes just as flowers and trees change from season to season, so does love and life.

Our children are grown. 

I feel there are many years ahead for me to share with them and their children even though two of the three are many miles away.

How I wish it were "we" instead of just "me". 

Time seems to move differently yet similarly and that's so strange when I think about it. 

Happy Father's Day and to you are reading this and have people in your life you lovingly call "family", cherish those who are here or there, with you, or far away. 

Memories are place holders in life. 

Create many and set aside those that cause disruption as they have far less value when viewed as yesterday when you're a part of today.

Revise The Federal & State Ombudsman Act & Long Term Care Facilities

COVID leaned against the Long Term Care Doors -- 

Let's Push Them Fully Open State by State

Not every State has an Ombudsman Program even though it's a Federal Law. 

Individual State Interpretations of the Law give power to the facility rather than to the individual and the family. 

Financing is basically on the State level so if OTHER programs need money, guess which programs are usually cut back or even eliminated -- THE AGING.

It's time to adopt a new approach to keeping Long Term Care aka Continuum of Care, divisions of care in different or the same facility from Independent Living to Assisted Living OPEN and 


You know the cost in time and money. 

You also know the challenges of everyday care giving.

In their home, your home, Adult Day Care or Residential Care, there's usually one primary care giver, a family member, who becomes THE VOICE of the aging family member.

You also know, as we found out, there is little if any financial support, in home assistance or other programs; they are poorly funded, sporatic in provision of services and dependent on "allocations" either from the private sector or the goverment -- almost always, the State where the aging person lives.

If you've experienced major medical costs: eye, hip, gallstone, escar or other, and depleted savings to a point where you need Medicaid... .


You will have a representative from the DHSS who meets with the Senior and "IF" there's no diagnosis of "mental incapacity" it's highly unlikely you will be told of the meeting or meetings, the existence of the "representative" or receive any paperwork which has included interviews, assessments and even recommendations.

If the Senior does not live in your home, you may not be told about contact being made, an interview done or any other processes or procedures including the DHSS making determinations and evaluations and then working to convince YOU the Senior needs a "Respite" while knowing that means they sign themselves into a facility and it's good luck your trying to get that changed.

OR, like we experienced, you fall victim to someone from a group, organization or facility YOU TRUST. Usually a she but can be a he, comes into your life perhaps at a time of significant challenge/need. Ours came in when both my mother and my husband were needing caregiving.Mom for LBD and my husband for medical challenges from mistakes made by medical practitioners.

TAKE HEED, AMERICA. We are a system of variance in services and that's a critical area for many as we've seen throughout the COVID challenge.

LTC doors may have "reopened" but they're still covered with false, misleading and deceptive practitioners who care more about profitability and raising their net worth than ensuring expenditures provide needed individual services and recognizing some parts of life should not turn people into multi millionaires.