Wednesday, August 19, 2015

Death Pays Another Visit

The day daughter and I visited Mom's grave, I felt compelled to make the trip. 

Although we could have gone either of the next two days, I felt drawn to drive the more than one hundred miles there and back on that day, not another.

It was a few days past her birth date. 

We always spent that day together and celebrated another year of life, another year of knowing the love of family as a unit of support and caring.

Daughter and I spent more time than we usually did among many headstones finding family members including Aunts and Uncles and Cousins with the same last names. 

We'd walked the cemetery before but not to this extent and so the finds were interesting as we tallied the number of relatives who lived, loved and passed as all have done and will do. I tried to recall Mom's stories of this one and that and of other people with whom she shared her time on this earth.

We'd taken along a lunch and ate it in the car on the half dirt, half gravel road that wraps from the outside to the inside of the graveyard and out again. 

In a way, we were "sharing" another picnic with Mom as we'd done so many times before.

For some cultures, this practice of visiting graves and eating is the same as it is for some religions who come to pray. 

It wasn't planned that way. We're still very much pinching pennies and making lunch is so much less expensive than buying even fast food on a dollar menu.

I've seen a lot of graveyards over the years as I've traveled and attended  various funerals and burials of friends and family. 

This one has been the most unique, peaceful and very memorable to me, possibly because it offers connectivity to my own family, to those who came before me. 

It gives light and hope for my journey knowing they had challenges and struggles, hopes and dreams, some that changed their lives forever while others may have been like a whisp of smoke, here for the moment and then vanishing into thin air.

There are no signs along the main road to guide you to the final resting place of members of the community. 

No Church sits nearby, no gate provides entry. 

It's as open and accessible and free standing as it was when the first burial began sometime in the 1840's or so. 

No neatly laid out plots although there are some lines and symmetry there is not the same "planning" but rather burials in family plots as they occurred, young children alongside adults, all whose lives are marked by dates on stone.

In the newer areas there's a linear positioning of the graves but there's still some variance.

The old tombstones can hardly be read; they're small and most are white. 

So open. So natural. Surrounded by the farming community and small towns nearby. Oh, there are other burial areas and some say this was the burial place for those who weren't "good members" of specific churches or who maybe didn't have the funds -- at least in the beginning.

Now, I think members of families choose this place because of the peace, the natural beauty and the freedom it represents and probably because it's a simpler place.

Monuments, yes, but very average and no mausoleums, no crypts, no definition of wealth on this earth by today's standards. 

Death paid a visit to our family on the same day we visited Mom's grave site. Was that why I felt drawn? 

Was I needing to experience this peace I felt when the last male member of my husband's family passed through this life?

The message came by text from my son who was travelling outside the country on business.

They passed in the order they were born -- oldest, middle and youngest.

One child remains, my sister-in-law. I had no brothers and sisters but imagine watching those in your own generation, with whom you were raised, pass, is a major life change.

I've written before about "moving up" in the line of chairs as relatives pass through this life. 

Losing a sibling, I would imagine, is like moving up and over and realizing there are no more seats left to occupy after all parents, brothers and sisters have left this life.

Without siblings, I reached the head of the line with the death of my parents. My father passed my first year of college and my Mom last year. 

Drawn to visit, to pause and to remember the good that we do for and with others is the most positive part of our continuing lives and memories that remain when we have departed.

Miss you Mom. And, dear brother-in-law, have great memories of times together and the blessings knowing you brought into our lives. Your gifts were many, your challenges as well, but you lived and were a part of life and love in our family, Downs Syndrome did not define you or our family.

Tuesday, August 11, 2015

A Magic Slate

Children of all ages and for decades have loved the Magic Slatetm

Basically, the Magic Slatetm gave a child the ability with a special "stylus" to write or draw and then to lift the special thin sheet covering the sturdy black "board" beneath and erase what had been written and write something else.

These creations of mind and spirit were not meant to be kept but they were a way to offer many options and hours of entertainment.

I have another memory of a Magic Slatetm.

While my husband was hospitalized and it was our Anniversary, I couldn't get to a card store and the Hospital Gift Shop had a very limited selection of cards, almost all were Get Well, Congratulations on Your New Baby and a few Happy Birthday -- but no Happy Anniversary. 

No blank cards, either. And, by then our financial resources were very limited when every dollar, every dime, actually, was a major expenditure.

When I spotted a Magic Slatetm in the Hospital Gift Shop, possibly put there for children visiting or spending unwanted time inside the hospital doors, I saw a way to remind my husband of better days and times, especially the day that started our journey together as man and wife.

I wrote the date of our wedding and the date of our current anniversary with the message: to have and to hold, for better or for worse, in sickness and in health, to love and to cherish. 

There was no mention of those fatal words, "til death do us part". I was hopeful and positive. We had no idea we'd just started our last journey in life together. 

It was a "bump in the road"; a medical challenge, major as it was, but one we'd get through and get over.

All we needed was time and one another.

Or so we thought.

At the time, we were still in the "beginning" days of his battle with so many complications.

Adrenal hemorrhage, pulmonary embolism, surgery that fell apart a couple of times, bleeding problems, a gallstone that came out of his ilium into one of his three or four colostomy bags necessitated by the constant breakdown of skin and from an incision that did not heal.

And so much more.

Then, there's the "magic" slate used in Long Term Care/Skilled Nursing Facilities:


States and Federal Regulations require guidelines for food and daily activities but many facilities use the disclaimer "may change" or similar words. 

Some of the "food" served to my Mom looked more like the food served to pigs and other animals. Often overcooked, seldom appetizing and always lacking in eye appeal.

Ever watch the TV reruns of MASH?  Remember the food line and the jokes and comments?

It's no joke to get food served in this way to our elderly population.

Recent TV and Internet articles have appeared on the need for "high quality" food to assist with brain development and even sustainability without medical complications.

A "new" Alzheimer's ad featuring a prominent Hollywood personality talks about the benefits of good, fresh food to maintain good health for this form of Dementia as good food sustains body development and healthy functioning.

Mom's facility "puts on the Ritz" as the old saying goes  when there is a possibility family members or friends will "dine" on Holidays or Special Occasions.  

Prime Rib was the featured dish at a recent celebration of Mother's Day. And, at least this time, my "complaints" were heard (probably because I voiced them to other family attendees on previous occassions who also took their concerns as I did mine to the Administration) and "regular residents" who did not have "paying family in attendance" were admitted to the dining room and not excluded as had happened so many times before. 

Many times I've seen the menu feature peanut butter and jelly, hot dogs and soups with little protein provided. Nice pieces of chicken, pork or beef are few and far between as are dishes incorporting these food basics or other proteins Seniors of extensive advanced age can easily digest.

Of course, there's a charge for attending these special occassions, and part of that charge offsets the food cost for residents but the food offered is of a higher quality and there's always a few more "extras" appearing in the cafeteria (the one that's only open for an hour a day for dinner from 4PM - 5 PM) like more fruit both canned and fresh varieties.

Activities?  Recently we've seen a few more based on the "floor" where residents spend most of their time but seldom do we see a resident who's taken outside in good weather and given the opportunity to "play" a "lawn game" or even have a checker board or table set up and gathering residents around to "play" and spend positive time together.

Since almost everyone becomes "wheel chair bound" within six months of entering the facility OR have the benefit of a motorized riding cart, it is a challenge to create experiences BUT this is their responsibility, their focus, their profession.

Perhaps if there was a higher staff to patient ratio?

TIME AND MONEY.  Interesting how a family of four can live in a home and pay far less for their mortgage, utilities, visits to the Doctor/Dentist, have some recreation and activities as well as maintain a car for far less than the average cost of residing in a lower cost Long Term Care Facility/Nursing Home in the State of Missouri with the average cost of $6,000 per year.  

That's $72,000 for basic care -- additional items can be and are added. I've yet to find a real average cost of living in a Long Term Care/Nursing Home Facility based on actual costs submitted to Medicare/Medicaid or Insurance Companies.

Why aren't we as a society asking for more transparency and more published costs? 

With about half the residential population on Medicare and Medicaid, it's taxes and other funds, including donations and fund raising, providing for WHAT EXACTLY?

We are encouraged to consider "Long Term Care Insurance" but these products are based on the current and projected annual costs along with the projected length of stay in a facility. That means we'll pay higher premiums when facilities incur higher costs NO MATTER if the cause is one they've created due to negligence or even abuse.

We need to wake up as a society. We need to realize when we don't ask questions, when we don't mandate transparency and open information from the industry of Senior Caregiving from residential facilities, we're placing a high cost on today's care and future care.

QUESTION:  Where do you think you'll be living when the need comes for constant care giving? 

Are you willing to exist day to day with the problems and challenges cited in this blog?