Watching Lewy Body Dementia Develop

Even when I walked in the "shoes" of daily living with Lewy Body Dementia, I did not see it, hear it or realize it was advancing and affecting Mom.

We lived together for decades on a daily basis. Perhaps that's why I accepted changes as "growing older" and didn't know what Mom was experiencing wasn't regular aging.

Life brings about change. As we age, there are typical but not always similar changes.

For example, I see many women with severe lines on their faces; some have sunken cheeks, hair (uncolored, that is) turns grey or white, muscular structure changes in arms and legs -- let's not mention the abdomen after giving birth esp by C sections.

Men, too, experience changes. Just turn on the TV and see all the "male enhancers" advertised.

Do we grow more cautious;do we react more to warnings, "Watch it. Hold on tight. Be careful. You might fall."

Children, grown now, seem to forget giving negative instruction bears negative reaction. 

Conversations with their parent is often full of admonitions, advice and instruction when observation, listening and conversation through the years as well as during the times of need, are most important.

We removed the carpeting attached to our stairs when we noticed Mom's hesitancy going up and down. This was well before she became more physically challenged. 

A cane came into use and we tore out a step and replaced it with an outdoor wooden walkway leading to our back door raising the level and ensuring there was a banister for balance.

Mom developed cataracts; we were told by her "regular" eye doctor, they just weren't ready to "be removed" and this went on for about three years. 

We should have changed eye Dr's earlier. Consulting with a more "advanced" office we found out Mom could have laser surgery and it was, indeed, possible and best then and not later.

LESSON LEARNED:  
Doctors have agendas; they have opinions; they are not all created equal.
GET AT LEAST A SECOND OPINION AND MAYBE EVEN A THIRD.

SPEECH AND SPEAKING:  Listen carefully and you might hear the brain "interruptions" in some speaking patterns. I heard it today in the voice of a prominent older entertainer commenting on another entertainer's passing.

It's not so much a hesitancy with Lewy Body, but a change in the tempo and cadence.

THE EYES ARE WINDOWS:  Looking back I recall Mom's "focus" when she was talking moved more and more away from the people with whom she was talking and seemed to wander more "inside herself". 

Some would say she was "thinking" but I wonder if this wasn't a reflection of her brain's movement among more memories being "reviewed" and less communication about the time and place we were currently in.

STANDING, WALKING, SITTING:  This was a hard one. Mom had an escar on her foot caused in a Nursing Facility by neglect and fecal material draining into a bandage. We found it "by accident" while she was "recoupertating" from a hip "nailing" in a Long Term Care Facility where she was sent for rehab.

Nine months of daily care by me and my husband and being somewhat "confined" to a chair certainly did not help Mom's return to walking and rehab was twenty some odd days, once a day usually, and then it was "over and done". 

Yes, Mom progressed, but she needed more strengthening and as with most "advanced age individuals", she was not used to exercising, daily work was her exercise, she lost a lot of physical capacity and capability simply due to the long term of her medical challenges.

With younger people, there would have been long term, assigned rehab but because of Mom's age, the "rehab" was limited by the Insurance company, I'm sure, although this is not information they want to share or make known.

IN MANY WAYS, OUR SOCIETY INCAPACITATES THE OLDER POPULATION THROUGH WHAT I CONSIDER TO BE A FORM OF DISCRIMINATION -- they're older, they're less capable, they're less "value" and therefore not provided the same care and concern and recommendations given for younger, more capable individuals.

THINK WE'RE NOT PREJUDICED IN THIS WAY?

Ever had the ability to compare the orders given over a cross population of various age groups with the same or similar medical conditions?

There's no difference in this practice and the hidden agenda by many Insurance Companies, Hospitals and Medical professionals regarding "recommendations" and decisions concerning what "procedures" are "needed" by an individual varying due to age or perceived "condition".

END NOTE:  Keeping this entry shorter, I'll summarize with the advice to read, research and above all network with others in your immediate community and beyond.

GET TO KNOW LEWY. GET TO KNOW ALZY. GET TO KNOW PARK -- these are short "nicknames" for three devastating forms of Dementia:  Lewy Body Dementia, Alzheimer's and Parkinson's Disease.

NEVER STOP LEARNING. NEVER STOP RESEARCHING.

Multi Generational Living Makes Cents

The news is full of articles on Millennials who were "forced" to live "with their parents" during the Economic Recession and the many who are still adding to the statistics of remaining "at home".

What was common practice in the last century and with many cultures, ages and stages of life under one roof, has become "abnormal" in our consumer oriented society that believes debt is a way of life -- multi-generational living.

Daughter and I live together; my mother lived with us. Both times it has been far more reasonable, realistic and advantageous a lifestyle than living apart.

We are separately quite capable of surviving and thriving but together we accomplish and achieve more plus we have the added values minus the huge cost of separation simply for the benefit of others.

When life hands you a lemon, make lemonade is an old saying. Why not enjoy life, share it with those you love and together build a better life than you could possibly have separately?

If I had a "live in significant other" that would be fine with the general society today.

If daugher had a "roommate" of a similar age no one would care.

Just because we happen to be related, enjoy one another's company and provide a mutually beneficial lifestyle to ourselves and one another we should live separately? 

It makes both good common sense to live together as we do and is financially responsible -- who cares what others think!

Society seems to think if you can't "make it" on your own, you aren't capable.

Quite the contrary, merging the lives of highly capable people benefits society far more than the struggles encountered by so many who "for appearances sake" move out, move away and move from job to job, often "take on" someone else with whom they struggle and eventually separate -- all in the name of  doing what is "expected" by people who really don't get involved, certainly don't want to have to support and actually have no vested interest in what lifestyle is practiced.

WE TOLERATE MANY LIFESTYLES IN THIS 21ST CENTURY BUT WE STILL CANNOT, IN THE UNITED STATES, BRING OURSELVES TO VALUE MULTI GENERATIONAL LIVING.

I watch as other cultures, much older and wiser than we, understand the true meaning of family, of caring for and about those who have given us life and love. 

We . . . move them out of their homes, into apartments or "Independent Living" then "Assisted Living" and finally, "Long Term Care".

We . . . see sharing a life together as "imposing" or "giving up privacy" or "becoming a burden".

We ... feel struggling to survive is a "right of passage" no matter your age.

We .... see those who share lives as "not being capable" and/or "failing to prepare for the future".

NONSENSE.  Life happens. 

We chose this lifestyle to accomodate Mom's need at a younger age than we would have because she had an accident that prevented her from continuing in her profession.

She did return to it for a while, when she lived with us, and I was relieved she no longer had "to depend" on what she could produce to make it from day to day. 

She deserved a life that was better than that. And we, through opening our hearts and our home learned the values we practice today.

For our family, we assimilate members into a unit strengthened by love, built on a foundation of trust and understanding and supported by providing each person with dignity, meaning and a feeling of positive contribution.

I moved out of my mother's home into a life with a husband and we followed the path of starting a family. I admit, it wasn't our thought we'd be a multi-generational family. 

Most young people in their twenties wear blinders on so many things in life while they tell themselves how much they believe they see and understand.

Looking back I have no regrets. Yes, there were adjustments. There are adjustments now. But Mom's life was far better than it would have been and so was ours. 

Mom was active, involved and led a life of choice rather than a life of servitude to the almighty dollar and the passing of time. 

She had a home, in a house, with her own room and her own possessions. 

She had freedoms and daily chosen responsibilities. 

Mom felt valued, needed, useful and capable.

Yes, there were adjustments. There were compromises. But we all gained and we all benefited.

Look down on us and any who strengthen their lives with being what some consider an "unconventional family unit" and you practice a form of discrimination. 

Believe any one of our family unit has "taken advantage" or been "taken advantage of" and you have closed your eyes, your ears and your heart to understanding a family unit has many definitions and compositions in the 21st Century.

Protect LTC Residents: Stop, Look, Listen,Take Action

Visiting the other day at Mom's old facility, daughter and I were  walking down the hall and heard someone calling out. We turned toward the voice, saw a woman half hanging off a bed and asked if she needed help. "Yes, please," came the reply. "I'm stuck. I can't move. I'm afraid I'll fall!" 

The resident's "call button" was connected to a chair she sometimes sat in but now she was in her bed. 

Even if it had been "on the bed" she wouldn't have been able to reach it and summon help.

The woman was head first hanging over the bed and she was obviously struggling to maintain control of her upper torso; with both legs amputated, she had little control in that position.

I stood beside the bed and blocked further movement down the bedside. Not knowing what other physical challenges the woman had, we were both reluctant to move her.

Daughter went to get help. She returned saying she couldn't find anyone in the same hall or in the adjoining hall.

Finally, daughter who was standing outside continually looking for someone for assistance, spotted an Aide (not sure if a CNA or simply a Nursing Assistant) coming down the hall. Apparently she'd heard someone was looking for assistance for a resident.

She stopped in front of daughter and told her she should be with the person she'd come to visit and not in another room. Trying to explain the resident's need, the Aide was adamant daughter "did not belong" in another room in the facility instead of moving immediately to assist the resident.

Daughter stood her ground. She'd found a resident in need and in a dangerous situation not able to summon help. Aide should have been grateful someone was passing. A rush to the Emergency Room on a holiday would not be good for the resident, her family or the facility.

WHAT RIGHT DID DAUGHTER HAVE TO "GO INTO ANOTHER ROOM"?

Missouri Law clearly states residents have the right to receive visits from anyone they choose. 

The resident was calling out for help. No one was visible. She asked the woman if she could help. She was invited to help.

Most importantly, the facility knows the medical limitations of the resident, has possibly encountered a similar challenge with the woman possibly reaching for something and finding she's "rolled" past a point in the bed where she can manage/maneuver her body.

MORE IMPORTANTLY:  The Aide, Nurses and other staff have no authority to limit or eliminate residents rights. PERIOD.  

Even if someone isn't "in need", you have the right to speak to, have conversations with and even make a report to the Department of Health and Senior Services if and when you see a system or procedure you feel is causing neglect or possible injury to or for a resident. 

RECOMMENDED:  Write a report using the time of the incident, exact location, name of the resident (if known), specific description of incident and because you are familiar with your State's Laws for Residents of Long Term Care Facilities, cite that specific section by number and content. 

Get the name or if the person does not wear a name tag that is visible (this should be a standard in the LTC industry but is not actively practiced)ask them for their first and last name and spelling. If the person does not cooperate, ensure you document by name/floor number, room number or exact location and time from beginning to end of incident. 

THEN SEND IT TO THE DHSS ASAP and make sure you ask they send a reply to what action has specifically been taken regarding your concerns stating you expect a reply within 5 business days.

NOTE:  I've been writing on the subject of safety and security for residents of Long Term Care facilities in this blog since 2013. During this time I've seen actions beginning to be taken to ensure the general public is aware and informed IF THEY KNOW WHERE TO LOOK on the web.

I've voiced my concerns about the Office of the Ombudsman and still have concerns over the lack of staff both paid and volunteer who work to protect individuals in Long Term Care Facilities and believe there should be a removal of the dictate that the Ombudsman "must be invited in" to a LTC. 

LTC's provide medical care; they provide more than a place to live. 

For someone to go into LTC, the general regulations require the resident to NEED DAILY CARE GIVING IN ACTIVITIES OF DAILY LIVING -- usually a set minimum number of activities of daily living is required to qualify. 

We have numerous laws on the books of States regarding children but few cover the lives of Seniors living in all levels of living: Independent, Assisted and Long Term Care. 

LTC's are businesses. They rely on funds generated from the individual residents to exist. 

Far too many times violations of personal rights provided within the State Laws on Long Term Care Facilities are not known.

In Missouri, click here to see what the law is and for other states, it's as easy as Googling "rights of the individual in Long Term Care Facility in state of .........."

Protect All LTC Residents. If you visit a loved one, keep your eyes, your ears open and remember:

You have the right, you have the responsibility to report actions, systems or procedures that you see as causing immediate harm, have the potential of harming if not corrected and, most importantly, cause our most vulnerable population to live in fear in their daily life from actions they cannot control. 

The ASPCA has heart tugging commercials seeking support and funding for animals, especially domestic animals, dogs and cats. We watch and many of us contribute money or time and we are appalled at the "inhumane" treatment.

Yet each day residential facilities for our most vulnerable population are acting in similar ways that we would, if we saw it and knew about it, say is inhumane or at a level that does not provide a quality of life we would want to personally experience.

Do Not Be Fooled by what you see on "public days" -- times when families are known to visit: holidays, facility events, birthdays of a resident. Facilities have marketing, PR and other people who work to "promote" a public image of care and concern while the actual practices do not reflect this advertising.

You Can Make A Big Difference for Today and For Tomorrow in Long Term Care

Liabilities and Assets: Value Determined

It's interesting how advice or focuses from some who are in positions of comfort and security always seem to be more authoritative and knowledgeable even when they do not make good, common sense.

We have struggled and are still in the process of regaining our lives since the deaths in our immediate family and we are often seen as making "errors" in decisions others choose to point out or to question through general statements which we understand are meant for us to "consider, examine and choose another action".

Had a recent conversation where a "home" was described as a liability and "renting" was far more reasonable and responsible as a decision. 

The explanation was in finance there are two sides to the balance sheet -- assets and liabilities-- and since a home needed constant attention and repair, etc., it was a liability.

The person speaking owned a home, and it wasn't their first home. Interesting how they chose not to follow their own "beliefs" and actually practice what they preach.

If it was such great advice, such sound practice, why begin or continue this practice? 

Why add more money to a "liability" and increase the level in purchasing a home of higher value? 

Ownership of land and property used to be solely in the hands of the upper class and often conferred upon individuals as a reward for service to a monarch or authority.

Do we want to return to this concept or retain our American definition of home ownership as a goal to strive for along with education and employment?

As a "Democracy", we believe in the individual and their abilities and possibilities and have struggled to ensure everyone had the choice of where and how to live as we instituted laws and practices opening private and public places to more accessability.

One could just as easily, and some have in various works of fiction, describe life itself as a liability. 

The body and the needs and wants of the body are certainly constant and require expenditures of energy and cost to maintain -- food, clothing, shelter etc.

We take up space. We use valuable resources.

Children. Certainly a liability there. But if we all chose not to have any -- where would we be as a species?

Those with physical and mental limitations -- accomodating their needs is certainly a monetary and space challenge.

The older population. What? Not productive? What value do they serve?

VALUE. RISK. What measuring methods are we willing to use to make a point, to ensure others "conform" to a specific way of thinking and acting?

Insurance companies evaluate the "risks" every day of providing "coverage" and "procedures" based on evaluations of how this affects their bottom line, which is essentially their "assets" and "liabilities".

Human Nature, humanity itself, is not so callous.

We see value and beauty beyond what can be measured and what appears to be useful.

Have not nations gone to war over "rights" and "responsibilities" they want to have or retain?

Freedoms are assets and they are liabilities. 

We cannot draw a straight line in the sand and divide this basic of our society into separate categories.