Thursday, March 30, 2017

Thank You! This Blog Is Making A Difference in People's Lives

This is a very focused website. By that, I mean, it's not on a subject nor does it have content large numbers of people would search for and  would generally pick up to read.

We should, of course, we're all aging. We're all facing life challenges and being prepared, having knowledge, working now to ensure a better future for times when we cannot work in this way.....

This being said, I am so grateful you and others have made the time to find this site. To read the entries. To understand my quest to share knowledge and to help others who caregive, who deal with life and death. 

As I write this entry there are over 18,900+ page views and adding more each day. Thank You! 

I see my journey of sharing our challenges, our misfortunes and our exploration of possibilities to raise awareness and be an agent of change is making a difference.

I continue to go on line, revisit various websites I've mentioned and find THERE ARE SOME CHANGES that have been made.

It's a start. We need to get to the finish line: transparency, immediate and accurate information provided to the general public and information provided in a clear, concise way that uses modern technology to give accurate current information along with accurate historical information.

Baby Boomers are on the front lines of caring for Senior family members and friends, the Gen Xers and Millennials are walking in our footprints. 

Last night at a special showing of the new movie, which I highly recommend seeing, "Going In Style", a theme interwoven is the responsibility of world societies to ensure the care of their oldest members. Laughed and laughed while seeing another wonderful theme -- aging is natural, aging opens doors to new opportunities while bringing more value to life and living.

What I loved about the movie was how it showcased the "real" Senior population --
  • Often living long distances from family members
  • Keeping or initiating new relationships including finding companionship, and yes "relations" -- so much is made today of "ED" everyone thinks you're incapable and not interested as you grow older and so glad to see this movie shows these concepts are myths perpetrated by a society who isolates itself from seeing the reality of aging is caused by a society that focuses inward instead of outward.
  • The self focus of corporations and businesses who value only what is best for them, not considering those who gave them this opportunity through years of dedication, hard work and often health problems associated with the job
Gen Xers really need to go. Many are self absorbed and need to get out of their own lives and see the real world around them. Get involved like many of the Millennials. 

The challenges we resolve benefit all the generations giving everyone more freedom, more peace of mind, and above all safety, security and a higher quality of life.

As is my practice, sharing information, raising awareness is the goal of this website. 

Across the board, it's about Lewy Body Dementia, families, caregivers, life and living with Dementia of all types and our experiences to enlighten, assure and be agents of change. 

Wednesday, March 15, 2017

WARNING: Hidden Facts & Figures Endanger Seniors and Families

How transparent is your Long Term Care facility or the facility you're considering for your loved one?

Where is the DHSS report located? This is the mandated report done at least once a year or more depending on your individual State's laws, rules and regulations.

Although most states require only one year be "on display" or "readily available" -- a good facility should easily be able to provide, hand over, any time of the night or day, the past five years of their reports. 

Some states, as Missouri has finally done, hopefully because of this blog and a lot of "beating the drum" for reform and transparency advocating for Seniors in Long Term Care, Missouri now provides five years of reports on line when they previously only provided one year.

STILL NEEDED:  A much easier, at a glance, compilation of recurring violations especially, to ensure the safety and well being of our Long Term Care residents.

Where are the hours posted for the various members of the Administration and Management Team? 

Where are the days and hours of the Registered Nurse and her office/location posted?

Where, at a glance, in one specific area can you find, without having to ask someone, all the information regarding the rules, regulations, guidelines, practices and procedures if you have a question, a concern and/or an interest in volunteering?

Where, besides in a distributed flyer, usually provided to a resident and who, depending on their mental abilities, could misplace or lose, is there a listing of upcoming activities where you can visit and become involved with your loved one? How up to date and accurate is their website? How visible and viable is the information ?

When there's a meeting for residents and/or for family members aka Resident's Council and Family Council, both of which, by the way, are parts of State Statutes and Federal guidelines, where is this information posted -- is it in an area everyone can see or limited to posting in an area some might see but others might miss?

On the web, how easy is your State's DHSS posting of the violations of each Long Term Care Facility, the reasons for a visit, the infractions, the challenges found, the remedies required, to read at a glance? Or do you have to sift through pages of information rather than a straight and easy Excel type spreadsheet with click throughs to obtain more detailed information?

Does your State have a standard contract for Long Term Care? One that ensures and protects YOU and your loved one? Let me know if you find one; I've spent time since 2012 trying to determine the answer to this question and not finding any.

It's time these "businesses" who have been given so much ability to control what they do, how they do it, are held to a higher standard. That will involve all of our efforts to be united in gaining more transparency and more accurate reporting of what is done, how it is done and by whom.


In admitting my Mom to one facility simply for Rehab services, reading the contract fully I found a small group of words that with my signing OBLIGATED me to pay for any and all services used or requested by Mom that were not covered by her Insurance. 

It was inserted within one of pages of paragraphs and if I hadn't struck it out, would have been paying possibly and potentially thousands of dollars, depending on what was deemed "necessary" for her care. 

With Insurance companies, Medicare and Medicaid paying less and less, not seeing this small entry could have been devastating for all of us for many years to come as it would have been a debt incurred through a contractual agreement. 

Why is it so difficult to find out what the basic requirements are in each State for Long Term Care Facilities/Nursing Homes?

I've spent a large part of the time since discovering Mom's Lewy Body Dementia in 2012 and writing this blog trying to find information that is clear and concise, where records can be openly obtained for comparison. It's an ongoing challenge.

I welcome any referrals to specific sites where you have found clear, concise information to pass along to those who read this blog.

In Mom's facility, just getting a list of the Doctors was a hassle. Once we agreed to a Dr, changing that Dr was long and tedious and both the Drs had to agree. Since there were few on the list, we were limited and some simply told us they had "no openings" at this time.

And, when a Dr "leaves" the facility, for whatever reason, you, the family member, are often not told. If your loved one is competent enough to notice, they may tell you, or they may not. Changes to medications, procedures, advisories and many other factors can occur with a change in medical staff and the resident and you should know when changes are considered or made.

If you go to/went with your loved one to Dr's appointments, as I did, you realize they often cannot follow the conversation of a Dr (you and I often have challenges in that way and have to ask a lot of questions) and the older the person is, they often DO NOT question, do not ask what other choices can be made or options there are. 

It's my belief a resident's rights should be ensured, not taken for granted.

For those of you "new" to Long Term Care, please don't assume you'll have connectivity directly with the Dr as they "value" their time and allocate a small amount to actual "on site" visits with a great deal of "phone" analysis, determination if and what level of medical intervention should be taken from information gathered/presented by the LPN/RN who calls.

Even when a resident is dying, the Dr doesn't make "house calls" in most facilities.

You can read the laws/statutes for Long Term Care/Nursing Home Facilities, on your State's website, however, these are the "general" rules and then there are the "specifics' -- for example:  how many hours of "nursing care" are required per resident during a 24 hour time period adjusts with the time of day and often does not include any consideration for the actual lefel of care giving that needs to be done due to the physical, mental, and emotional needs of the individual resident.

The very definition of "Nursing Care" is also open to interpretation. It does not always mean a Registered Nurse or even a Licensed Practical Nurse providing any form or amount of direct care for a resident.

Nursing Care includes administration of medications BUT it can also include the amount of time a Nurse spends in completing records. There is no additional contact or service provided the resident, however, there is service provided "for" the resident and so it counts and usually reported in 15 minute increments, not the actual time it takes. Go over 15 minutes with a service and round up is usually the practice in a facility, or so I've been told.

Hidden facts and figures endanger our Seniors and families. You are the resource, the ways and means and your reading, sending emails to State and Federal House and Senate members and ensuring the web is full of comments, pictures and concerns about Senior Long Term Facility Care is critical.

Like it or not, many of us will spend time in one of these places. 

Let's make it time worth the days of our lives and not time taken away from our lives.