Sunday, September 28, 2014

For Pam: Death Not Wanted or Welcome

Pam . . . sometimes I take longer these days to make an entry in my blog and seeing your comment I wish I'd seen it earlier. Just read your Sept 22 comment and today's Sept 28. Hope you return and find this entry.

This time of year brings to mind the beginning of my husband and my final journey together. My recent return to the ranks of those between jobs (yes, I'm still working; must for both financial and personal survival) has added times of regression into feeling a little more "down" than usual these days. I know I can use the time positively and perhaps that's why I've been "given" another opportunity to regroup and rejuvenate. 

Ten months is so long and so short a time. And approaching the holidays and that first marker, one year, . . . I remember. Sometimes I just can't believe it'll soon be four years since my husband's passing. And, it's now been eight months since my Mom's passing. Days often blur as do nights.

Time moves forward taking us with it. I move forward realizing I have to provide and I must find ways; this continuing struggle has sometimes offset the loss. I know for myself I need to actively engage my mind and my spirit; it's what I've always done and must continue to do to be "me". For even as "us", he was still "him" and I was still "me" and as I move forward I'm grateful we walked the road of life in this way.

UTI's are horrid and so prevalent in hospitals, rehabs and Long Term Care facilities. Infectious diseases are rampant in many facilities and they're something given little attention or interest. I'll write another time about the challenges we went through with the dozens of infectious diseases we encountered with both my husband and my mother when hospitalization or care in a facility was necessary.

I see my stats rising but don't get many comments. I'd like more input, more conversation, more feedback but understand many who possibly read my writing are walking those most difficult roads and hopefully reading about my still continuing journey and all that went before helps them in some way.

You commented about the entry Three Times Three: Screams of Guilt Beginning to Subside and shared the loss of your beloved husband of 48 years. We walk together and many walk the same path, Pam, they're often invisible to us and sometimes they emerge when we least expect in a chance meeting, as happened to me as I wrote in that entry.

We're here; we see; we are the unseen and often the unheard as we take our own hands and wrap them around our backs to keep moving, pushing forward through those "gelatinous" times when we feel like we're floating in a time and place without any perceived up, down or sideways.

I'm walking ahead of you on the journey through life after losing those so close, so loved and so missed . . . and honestly, some days and even some minutes are better than others even after almost four years since my husband's passing.

It wasn't my husband who had the LBD. He contracted MRSA and so many horrible medical challenges from October 2009 until he passed in January 2011. WOW! That looks like such a long time when I write it that way. If you read it by the year dates, it appears longer but if you see the months and know the dates, you realize it was about 15 months. Such a short time as we measure time but measured in the pain and suffering, the confusion and lack of information, the constant level of emergency and never knowing from minute to minute what was going to happen next, it was an eternity for him and for us.

We pledged ourselves to one another through sickness and in health, to love and to cherish and then there was that statement we only saw as "someday" and "far into the future" -- til death do us part. Looking at our wedding pictures, remembering the ceremony, seeing the joy and happiness in our faces and the expectations of our future together --- so much of life ahead of us.....together.

Flash forward to today and through all the days we shared together. And, that's the reality -- shared together. Even when he travelled five days a week for work; when we had our differences; when we were upset about outside challenges that affected one or both of us; we were together.

Some would say to you and to me, well, you had that time together. How fortunate you were. So many years. And, hearing about the losses of children and spouses who pass when loved ones haven't had "that much" time together, I understand, but I'm still feeling my loss, my hopes and my dreams that are so changed and so different now without him.

As I write I hope to share the positives as well as the challenges and how this continuation of life is a part of life, unwelcome and unwanted as it is.

Friday, September 12, 2014

Thinking Back: Memories Revived Going Through Mom's Things

Seems like so long ago; seems like yesterday. Mom's final days with us and her departure from this life.

Hurts to remember. Still pangs of frustration and feelings of anger at the Skilled Nursing Center who insisted we could not have any Hospice except for the one they provided that didn't really provide any support, in fact they showed their total ineptness with how they "managed" her end of life care.

Where was the Department of Health and Senior Services when we needed them? 

They were quick to come to judge our home and me as being "abusive" without any investigation and the word of a woman who came into our lives infrequently, took Mom to the bank, had her take money out of our home and opened a safety deposit box.

The DHSS "Adult Protective Worker" believing this woman's false, misleading and purposely planned "turn the tables" and "point the finger" so she could get away with several months of money from Mom's Social Security.

Why did the DHSS never pursue an investigation of the woman and work to clear my name? 

Why did they continue to allow Mom's Skilled Nursing Center to violate so many rights of the individuals who lived/live there and when called in to do an "audit" of reports, from others?

How can we be sure about the woman who came into our home, from our Church, and attributing the disappearance of money from months of Social Security Mom had no opportunity to spend? 

Mom trusted her. Mom followed her lead. Mom even went into a facility and stayed there because the woman visited her frequently and made sure Mom was constantly provided with "things" she should have had from her home, our home, but instead the woman "bought" for her. Sadly, Mom had no idea the woman was using Mom's own money for this purpose. Mom didn't even blink when the woman got a "new car".

What did the woman "buy" for Mom and claim to provide as "gifts":
a hat, glove and scarf set (Mom had at least six) made of a slippery yarn that if she'd worn them when using a walker, her hands would slip off the handles. This from a woman who "specialized" in caring for men and women with Alzheimer's and Dementia????

Another gift was a three drawer plastic "cabinet" on rollers. Mom was provided with a dresser but this had "see through" drawers and Mom was convinced this was where she should put papers and her phone.

I believe it made it easier for the woman to see and get to papers Mom had and to continuously get Mom's phone, as she did, to take my telephone number off and put her own on one of the three speed dials.

So exactly why would the woman need to remove my phone number and put her own in the phone family provided for her?

It was a way of ensuring Mom didn't connect with me; the woman probably thought we wouldn't check Mom's phone, but we did, daughter and I. And every time we put my number back in, the woman would visit and remove it putting hers in its place. It was to maintain control over Mom.

You're probably saying, why didn't someone intervene?  Well, the woman had "convinced" the facility I was an abuser just as she'd convinced the DHSS representative. Read some very early entries to "catch up" in this area. And, Mom had "rights".

I'm not in favor of removing individual rights but I do believe Seniors need protection, especially when the DHSS previously had determined there was an inability to have in home care and stated as the reason it was because Mom was incapable of keeping records.

Changes need to be made in Missouri. More than have been done.

Hope someone is reading this from the State. It's time to reopen the case, investigate the "abuse reporter" and have another entity investigate her reports of payment or income. My Mom and our family couldn't have been the first and won't be the last until someone cares enough to stop Elder Abuse by stopping someone we believe is a continual Elder Abuser.

Sadly, the Missouri DHSS does not oversee its staff to ensure accuracy and timeliness. 

The Missouri Statues allow accusations but there are no specific guidelines at the Elder Abuse Hotline or within the State of Missouri DHSS to ensure an accusation is completely investigated. If found without merit, it should trigger an automatic investigation of the person making the accusation, especially after being told the woman who made the accusation was most probably the one who took a substantial amount of money, as we calculate, most probably $5,000 and more, from Mom.

Mom had no way to spend her Social Security during all the months my husband was so sick and actually in the process of dying. I didn't pay any attention; too busy caring night and day, day and night, to my husband's four bags taped onto his abdomen constantly draining, results of a MRSA infection, 100 days in the hospital and devastating and debilitating physical challenges. 

Where did the money go if not to the woman?  Not to us. We were barely able to survive and sold many things to keep going until daughter finally found a minimum wage job and I got a part time job. We've made it almost four years since that devastating time of the woman's upheaval of Mom's life and ours. Can I forget?  Will I forgive?  How can I when I see the woman is still "working" in the Senior community and have no way to ensure another family isn't "taken" by her maneuvers and manipulations.

Now the woman's moved on. Out on line I see where she's working "for the Church" with SVDP and she's the Home Visit Coordinator. How convenient. She gets to see who "needs" a visit. 

Being a fairly high economic Parish, she can see who may be getting visits from SVDP and most probably any and all visitations. Yes, even in difficult times the best areas and people have problems; not necessarily financial, but trying to stay at home and manage daily living.

How convenient to know who might need "help" as an older person. Our Church wouldn't listen. Perhaps like the scandals the denomination has had to go through with the abuse of children, they'll someday face the same challenges over our Senior population due to people like the woman who abused my Mom and our family.

I have the comfort of seeing all the wonderful birthday cards and notes Mom wrote over the years; the pictures; the memories. I see, too, from those small changing notes where her handwriting underwent serious changes from being legible to being almost impossible to read. I see more clearly now and going through papers and things that were hers, things I never went through while she was alive out of respect and being of the generation taught about real "privacy" and "trust".

I know, Mama, I see more clearly now. We were so close, too close, perhaps, living together for so many decades; accepting, moving forward, adjusting without seeing the decline, the slight changes that would only be significant so close to the end of life, the differences between Dementias is sometimes like a huge chasm with Lewy Body Dementia and its masks making daily life clouded.

Thinking back; looking forward. Moving onward knowing we did the best we could with what we had and what we knew. Moving onward sharing and caring; telling others what life with Lewy Body Dementia can bring into the lives of even the closest families and relationships.

Tuesday, September 9, 2014

Moving On While Standing Still

We celebrated Mom's 100th birthday visiting her grave a few days before the date. I can only remember one time not being with her on her actual birthdate during her lifetime.

Mourning for Mom is different from mourning for my husband. Death and dying are as individual as life itself and so is the experience of losing and living with the loss. Although they're different in how they've affected us, the loss of two of four members of our immediate family/household has been greatly and profoundly life changing.

We've moved forward, many times moving backwards and often standing still. Daughter and I have told one another "we're making it" and now we're saying "we're on our way".

Are there really significant differences changing the way we feel, the way we live? Well, there was a time when a nickel, five cents, was significant; when the purchase of toilet paper or bare necessities for living had to be measured, evaluated and put off until the last possible minute.

My oldest son would say we wouldn't have had to go through that if we'd simply sold our home and "moved on". But then he hasn't chosen to come back except once in the three years Mom was in an SNC and then for husband's funeral and his Grandmother's.

For some people it's easier to walk away, turn your back; that way you don't have to see or hear anything that might be disruptive or disturbing and you can go on with your life. It takes a tremendous personal strength and emotional development to face life's challenges head on and constructively manage their effects.

If someone you know/love loses their "other half" don't be so quick to try to get them to "move on" which you might think is best to "move away".  After all, you might reason, the house is too big, or remote, or requires too much upkeep and maintenance or dozens of other reasons why YOU believe it would be best to get rid of. Want to talk about possibilities and alternatives, fine; just don't assume, especially if you're not close to the person on a daily or very frequent basis, you know what's "best" for them when it's actually in your best interest because then you can put that "possibly challenging current or future situation" on the back burner of life and not have to be more involved.

Let me try to explain. When someone you dearly love is lost, you feel as though you've been torn apart -- that a piece or an important part is gone. The last thing in the world many people need is to have another upheaval in their life and another change. Not all, though; for some it might be best; it might be more beneficial. Let them lead; let them ask; work with them and not insert your needs, your wants and your best interest.

I would imagine someone who loses the use of an arm or a leg or its removal has happened, either by chance or by choice, understands the loss yet the feeling the appendage, the person, is still there who's passed on. Anything that's such an intrinsic part of everyday life can be a loss from a move to the ending of a relationship.

It's like suddenly being in the middle of a tornado; the aftermath of the death including the funeral and even months after you're so busy "adjusting" and trying to keep moving ahead -- taking care of bills, settling matters, getting used to "being without" that each day is a major accomplishment. No matter your level of intelligence and ability to reason, there is change and that change is usually not one desired or welcome.

When time passes and you realize you are here, you must go on, you must do more than simply survive or go from day to day, you may experience times of panic, times of emotional "attack" that can come on when least expected, triggered by something experienced in the past closely associated with the span of time between realizing the end is imminent and the actual event.

In the first few months, I could barely make it through Walmart without tears running down my cheeks. This aisle had the Protein drink we tried in hopes everything that went in didn't come out without something, some form of "energy" remained. Then there was the men's casual clothing area with the drawstring fleece pants, the only kind he could wear because he could adjust them and position them so his four bags taped across his abdomen so precariously to allow the openings, the holes in his stomach wall and intestines, could drain.

How long until the pungent acidic odor no longer comes to mind? How much more time until I stop thinking about what I might have done differently?  To stop asking why he seemed to accept all that he had to endure.

The MRSA had spread and with the incision, the one the "benevolent" Dr, the surgeon, advised the attendant to make to "drain" through lancing a "boil" and which he did not see before giving the order, caused rupturing, caused spreading of the MRSA and no amount of "repair surgery" cloaked as "necessary for the condition" would work -- in fact it would make the entire situation worse.

Too young. Too early. But never the right time for death to come knocking.

Some times are definitely more difficult than others. I try to keep busy. Working helps. Jobs are still scarce and especially when you're at the age I've reached in life. Ageism has become so very real where once it didn't matter. As an entrepreneur, having our own business, no one cared, no one noticed and I had great responsibilities, amazing opportunities and did financially very well. Now, just getting my foot in the door is an accomplishment.

Difficult economic times have placed daughter and I in very challenging situations. My sons have no real idea what we have done to survive. Nothing illegal and nothing immoral but far beyond their "privileged" ideas of how someone should live and the lifestyle they had in our home.

My early life, before husband and family, was full of economic and other tremendous struggles. Been there, done that -- although this time around, the journey is far more difficult with the added weight of the loss of husband and mother. I believe it's easier to survive adversity when you can focus on a loss of things rather than people.

Flashback. I get a lot of those these days.  Coming home from being out with my then "boyfriend" who became my husband. We were both home from the college we attended and where we'd met. It was early January and we were on our last weekend before heading back to school.

Interesting thought: Three people so close in my life, all departing in the same month.

When I opened the door to the apartment where Mom and I lived, she was sitting in a chair next to the telephone and I could see she was crying.

My Dad had died. I'd seen him not too long ago in the VA hospital; lung cancer they'd said. He wanted to go to another VA Hospital, he'd told me, to be closer to me, to Mom. They'd been divorced at that time for five years although it felt like two or three times that long. I'd told him he was closer to me where he was because I was at a college nearby.

Sugar doll he called me.

Sadly his alcoholism and smoking brought his life to an early end.

Sadly his alcoholism provided more negative memories of our life together.

Dad was younger than my husband, but not by many years, when he passed.  Another one of those "thoughts" that hasn't come to mind before. So many seem to be rising up out of the depths. Is that good?  Is it a sign of healing?  Is it a sign of .......?

What I remember is seeing my mother's tears and knowing the living H... Dad had put her through for so long. Yet, it was obvious, she still loved him.

Love is very strange, indeed.

So, as the world sometimes whirs around me as I stand still just trying to remain standing, I refocus and reposition because I told my husband we would make it, we would be all right.

Moving On . . . While Standing Still.

Monday, September 1, 2014

AGEISM: As Dangerous as Sexism and Racism

Stopping by a local library several days ago, decided to wander the aisles as I've done since I was a small child. A habit that's become a great life gift I suggest everyone pick up.

On one shelftop was a book standing on display by itself. I wasn't looking for any specific subject, title or writer but this book caught my eye and I'm glad it did:

AGEWISE:  Fighting the New Ageism in America by Margaret Morganroth Gullette

It's not a quick read and some areas may need to be reread. Ms. Gullette, in my opinion, shows many of our life challenges for what they really are -- we used to call them "prejudices" but then new labels added "ism" to many words like : sexism, racism and yes, ageism.

DEMENTIA. The belief this affliction cannot be managed, delayed or avoided leads to AGEISM which classifies anyone beyond the age of 50 as "questionable" as to what they can learn and what they still retain.

SHIFTED "ISM" FROM SEXISM TO AGEISM.  In the 1960's when women were pushing for an Equal Rights Amendment, the outcry was heard, "If a woman takes a job, she takes it from a man. There won't be enough jobs to go around."

Today, with the repercussions from the "Great Recession", the outcry has become from the young who've gone to college and can't find a job, "If old people don't retire, don't get out of the job they hold, there won't be one for me and my friends. They don't need to work. They have Social Security and Pensions."

Sadly, many need to work. Gladly, many want to remain working. 

The "Great Recession" and the economic downturns the now 65+ men and women faced and survived, albeit without savings or retirement programs due to the financial losses of the 70's, 80's and 90's and the continual cost of living skyrocketing, makes working a lot longer a necessity for many and a "cushion" for some. Sure, there are a few privileged people who made it through all those times; many, however, inherited small and not so small amounts from parents and other relatives so they have a larger "cushion".

For those not so fortunate, for those who've struggled with great losses including the most recent stock/retirement losses and let's not forget those losses from the Financial companies who "went under" and took with them life savings and retirement plans from many who could least afford the loss -- it's a matter of a NEED TO WORK as much as it is a desire to work.

HOW WE LONG TO HEAR THOSE ADS:  FIFTY OR EVEN SIXTY IS THE NEW FORTY.  All the products to "keep" and extend youth now being sold to those with an ever voracious appetite to "be young forever" and who welcome the latest, the greatest and the newest creams, rubs, injections and augmentations because, they're being told, "ageing" starts to show on your face, your neck, your arms, in your body, as early as 30!

POOR, DEAR, GULLIBLE 20 SOMETHINGS.  Love the age group. Have a daughter in it. But many are really too, too, susceptible to what they hear, read and are constantly exposed to in the so many forms of media. At least my generation had less exposure to constant and incessant "dictation" of what was expected, desired, needed, required -- simply to make it through each day. Oh, we had "expectations" of "general society" but we didn't have the incessant and never ending 24/7 in-your-face cannot escape and cannot get past constant poking and prodding to buy, consume, get, wants/needs, of today's "average person".

THE FACT IS. The world is changing at the fastest pace ever experienced. There used to be manufacturing revolutions but they took time and allowed people to learn, to grow and to adapt. Today, you'd better be a Chameleon and change immediately like those creatures featured on the TV commercial for the paint -- constantly changing as they move from one to another color just as we're supposed to immediately become saavy on various and varying types of equipment, technological systems and procedures.

LEFT BEHIND.  Even the 20 somethings are being "left behind". In today's world, the 8-10 year old kid may be in a classroom where he/she uses a computer at his/her desk and the teacher has auto and random access to "see" what the student is doing. That "kid" is becoming capable of replacing the 20 something's work by the time they're in their mid teens. The bar moves lower while the expectations move higher.

TALK ABOUT EXPECATIONS.  After all, if the teacher doesn't have to move from desk to desk to "look at" the work, or can "correct it as it's being done" ----why, that opens up more time in which the teacher and the student can do more, more and even more!

FASTER ISN'T ALWAYS BETTER.  NEW ISN'T ALWAYS BEST.  Producing goods faster didn't make them better, it often meant the garment or product could be produced cheaper because a machine handling the product could put together less durable items faster. After all, inventions and adjustments to design can be made faster. A vicious cycle followed by the desire for cheaper and cheaper goods and so the work follows the path where cheaper and cheaper labor can be obtained.

JOBS AREN'T BEING "TAKEN OVER" BY THOSE NOT LEAVING, they're leaving because people believe they should have more and pay less. Eventually they get less quality, durability and spend a lot more, but because they're forever chasing that "gold ring" on the merry-go-round they've been put on and chose to stay on, the ride becomes longer and the people go from very young to very old.


History has always been one of the best teachers in society. Take a close look at those that set aside knowledge and disvalued people who reached a level of competency. The society slowed, broke down and eventually collapsed.

LISTEN. WATCH. LEARN.  How can you when all those around you are protecting their job, their advancement and their "future"? That's what happens when everyone is "homogeneous" in age or approx. age. Ever try to get someone your age you worked with to "share" information, systems, procedures?  Ever feel they were undermining you if they weren't mentoring you? Organizations where competition surpasses cooperation and value of the group along with the individual find themselves constantly struggling and moving in directions that take them down side paths instead of towards the goal.

BUSINESS LEADERHSHIP NOW FOCUSES ON "COOPERATION" AND "INDIVIDUAL RESPONSBILITY" as those were brand new ideas and attributes. My Mom worked on a line producing parts for airplanes during WWII and those were the same guidelines and standards she was taught. It's not a new idea, it's simply more necessary because people are in survival mode and jobs are tight, advancements are scarce.

AS FOR ME.  I'M A CHAMELEON.  I'M A COCKROACH.  Adaptable and a survivor.

Bring it on world!  Growing older means I've seen what you haven't; I've done what you haven't and I know what you'll struggle to find out and make mistakes, just as I did, when you could have asked, consulted, valued and said, "ISM's of race, sex or age don't belong in the life I want to live."

Age, if you're fortunate physically and mentally, is only a mark on a calendar. As long as you can, DO IT, as long as you want to, TRY IT!  And for those who along the way make the same kind of "IST" remarks - sexist, racist and ageist -- show them with our words and deeds, your abilities and experience, they're the real losers in life as you've found what's most important -- EVERYONE, EVERY AGE.