Tuesday, May 7, 2013

Portrait Part 2: Abused Family: Journey Into The Darkness

Originally published May 7, 2013. This would be less than a year before Mom's death. The challenges below were from Summer 2009, years before Undue Influence came into our life.

Enlightenment is important; keep a journal for those family members who question you as you journey with a loved one

Part 2:  Journey Into The Darkness

Summer 2009 was like many others. Mom's recent challenges with surgery on her left leg were finally becoming a part of our recent past.

Mom, in her early Nineties had a stint implanted and when that didn't work the Dr removed a vein and created a new artery.

This was followed by several weeks stay in Rehab complicated by a severe foot infection from diarrhea the Rehab hadn't controlled seeping into her bandaged foot and leg causing a deep sore and formation of an eschar: a jet black area where circulation appears to have ceased and thought is the entire area has "died" and will spread or cause gangrene to set in. Then came Doctor's concern removal of foot and leg might be necessary.

As a family, husband and I committed to 24/7 numerous bandage changes, emotional support and trying to convince and encourage Mom to elevate, elevate, elevate her leg and exercise, exercise, exercise to build strength and maintain ability.

Mom was anything but the "easy patient" and although we didn't realize it then, she already had Lewy Body Dementia so her reactions and actions were often anger, hostility, depression and even hallucinations and delusions were present. 

These were  signs we did not see for what they were but attributed to "medications" or "depression" from being "confined" or "limited" or "told what to do, when and how" to provide healing which she wanted but didn't appreciate or like how it had to be done.

We'd nursed Mom for more than nine straight months. We were determined to save her foot and leg and we did. Today, there's a small, almost invisible white line on the bottom of her foot; it's the only remaining "mark".

Mom has had the use of her leg, could walk and get around very well until the LBD took over her body to the point of causing severe interruption in physical abilities including balance, standing and walking. But we've given her six more years beyond her surgery and resulting eschar and she's enjoyed the independence we were able to provide. 


Lewy Body Dementia requires someone to show you the "language" of the disease and without being shown its nuances and variations, you easily overlook, misunderstand and assign different meaning.

This blog hopes to provide that "language", that "insight" shared through close, personal views of this devastating disease that breaks apart individuals and families.

It describes how a family and an elderly person can be taken advantage of by someone seeking personal gain. It shows the real life effects of Undue Influence on the victim, the family and society as a whole and the costs we all shoulder from not recognizing all forms of Dementia, especially Lewy Body Dementia with it's many individual variations.

Yes, that late Summer of 2009, we were finally returning to "normal" life as a multigenerational family with a daughter in college and very elderly Grandparent in residence.

In July I even volunteered to work for my Church in a local Nursing Home (SNC) for a couple of hours a week; the group was desperate for help and I thought it would give me time to pray, reflect and share my time with other Seniors.

Having cared for Mom over the years as her physical needs grew, I felt a "calling" to reach out to others less fortunate who lived in facilities rather than in their own homes or with extended family.

That's where I came in contact with JH who was also a volunteer from my Church. I thought JH was an amazing person; so dedicated and so caring. She mentioned working with men and women with Alzheimer's and Dementia, how she was a Registered Nurse and worked for herself.

JH told me she worked on her own, not for a service, didn't accept insurance payments but worked for cash only. Of course, it wasn't that "cold" when she talked about it; it was simply a passing mention, one you make or hear as a part of a conversation on many things and so it doesn't "ring any bells" or "stand out" at the time.

JH usually attended Church services at a different time, I didn't see her or know her. I'm not the only one who really doesn't know JH; in the last three years I haven't found anyone who attends my Church who really does. 

JH seems to blend in and not stand out; even her choice of clothing and hairstyle are very nondescript; usually neutral colors and almost always no makeup. Several people have mentioned they've seen her, some have worked with her on Church projects but I haven't found anyone who really "knows" JH.

As a multigenerational family I thought what a "blessing" JH was to people who were her "clients", as she called them, for sons and daughters who didn't live close to their parents and greatly needed someone to care about and for their loved ones; she seemed so concerned and talked about making dinner every night for one man and how she took "her clients" to Dr's and even helped them get rid of items they didn't need, move out of their homes and into Nursing Homes "when needed".

In mid July my husband started having "intestinal problems" and by late August we'd gone to the ER and to visit a Doctor.  Tests were inconclusive. We went home. As the weeks passed, he became weaker and weaker; once capable and doing everything around the house, he could barely sit or walk and tired so easily. By late September, we went back to the ER and thus began the final journey of our life together -- although we didn't realize it at the time.

I stopped volunteering with the SNC and had no more contact with JH until late November 2009 when I texted her to pray for the soul of my brother in law who'd just died.

My husband was in Critical Intensive Care, had been in the hospital since late September with MRSA discovered, an incision in the ER that should never have been made causing complications, surgery to remove part of his small intestine, major reactions to chemical drips (I called them experiments) to try to figure out what would kill this "flesh eating disease", adrenal hemorrhage, pulmonary embolism and so many more life threatening medical challenges that were only just beginning.

My husband spent over 100 days in the hospital, almost all the time in critical intensive care. One challenge would subside and another would appear. We "celebrated" our forty first anniversary in Critical Intensive Care; I couldn't get out to find a card so I went to the Hospital Gift Shop, found a child's "magic slate" (the kind you write on and then raise the filmy cover to erase what you wrote or drew for another message or drawing) and created an Anniversary Card to put up in his CICU room.

Little did I know he would soon be joined in that Unit by his brother and then only a short time later, his oldest brother would precede my husband, dying in late November, 2009.

I remember so well writing our names, the date of our marriage and the date of that anniversary. I also wrote, "In sickness and in health, to love and to cherish" but I did not write "til death do us part". Even though the challenges we faced were overwhelming and too numerous to count, I did not believe our life's path was so close to the end of our being together.

My daughter and I were barely hanging on emotionally and monetarily; so many downturns, loss of ability to work, trying to balance obligations with mountains of medical needs and Mom's growing challenges along with my husband's. Each day came and went without knowing what would happen next; all we could do was wait for the next Tsunami and ride the wave until it leveled out while praying another would not come and yet feeling it was just beyond the horizon.

We had to leave the hospital; insurance ran out; husband not ready to "go home" so finding a Rehab Center was critical and since we needed one skilled in Wound Care, added to the difficulty.

Husband had four openings on the front of his body; one from the ER incision that should never have been made as it caused more challenges, spreading of the MRSA and other complications; one from the incision for the surgery that, along with the second one for a drain into a bag was supposed to be closed as soon as husband "gained more weight" and a fourth that opened by itself due to the lack of nutrition and the ever challenging blood count not high enough to promote healing.

Wound Vacs, two of them were on for a long time,and then one, and finally, just three or four plasticlike Illiostomy bags constantly accumulating drained materials from his intestines, constantly needing to be drained and changed.

My husband didn't know lack of pain and suffering and I cannot begin to describe how watching this tragedy unfold was shattering our world one day at a time. I know it was difficult for my daughter, young adult though she was, to witness her father's struggles. I also know it was a challenge to my mother to be in the same home, not taken out for excursions and given the attention she'd received over the months of highly personal care she'd received so recently.

When we were finally "going home" from Rehab, it was with hope but also with trepidation. We would get Home Care but soon found this "service" was considered "temporary" and that I was expected to be the one to take over and do all the changing and patching of bags and other numerous needs of my so very chronically ill husband.

Much too often one or more, even all four bags would break loose and flood my husband's hospital bed in our converted family room and him while I tried to piece and hold them together waiting for Home Care to decide if they would send someone out, again, another unplanned/unscheduled time, to try yet another way to get a full day or even a few more hours before another breakage occurred.

Many nights I slept upright in a chair beside his bed; he could no longer climb the steps and sleep as we had for so many years beside one another. That privilege and companionship had ended.

Without sufficient insurance to cover the escalating medical costs and savings already almost totally gone due to various other challenges including the economic downturn and devaluation of what remained, we struggled to pull together and determined to make it through "to the other side" which we truly believed would be my husband's health returning him to the strong, capable person he always seemed to be "before".

So, when the offer of providing evening meals for our family for a month from a volunteer organization at our Church was given, we were most appreciative.

Little did we know this would be the beginning of even greater challenges and the end of our family life as we knew it.

That was how JH entered our life; she volunteered to be the organizer, the person responsible for scheduling deliveries of the meals, the person who contacted Church members and the person who was constantly in our home and keeping in contact with us in person, by email and by phone.

JH inserted herself into our family and made herself indispensable and then gained our trust and finally split us apart as a family unit.

More on that time of going through a glass darkly alongside a woman who shattered our lives in a later blog.

If I knew then JH would turn out to be someone we truly believe is an Elder Predator and Abuser, I would have locked the doors and windows and refused to return her phone calls.

But I didn't. And now I'm here, without him, the love of my life, and without her, my mother, my friend, the person who gave me life and who showed in so many ways how deep her commitment was to me and to our family, who was  torn from my life as my husband was starting the final weeks of his earthly journey and who would be totally turned against me and "replaced" by JH.

Today, I still struggle with her influence, her manipulation and control. The difference is I'm wiser, the light has entered into the darkness and I'm shining it far and wide so others will see what I failed to see and endured a life journey I wish on no other individual or family.

Mom and I have moments of closeness but we also have JH induced times of Mom being angry and frustrated and turned against me for some "conceived idea" Mom's life was never great in our home and she was never cared about or loved while there.

And, we believe JH plays with Mom's mind creating scenerios and making things Mom cares about disappear and reappear, like "magic", convincing Mom these "thefts" and "misplacements" are common in "faciilties like she's in".

As you'll discover we believe in a later blog, it was JH who worked to ensure Mom went into a Skilled Nursing Facility and how we believe JH knew with her RN degree, years of practicing Nursing and working with the elderly with Alzheimer's and Dementia, exactly what she was doing and what it would do to Mom and our family.

Another Blog Entry to Come:  Portrait of an Abusive/Abused Family Part 3:  Walking With A Wolf In Sheep's Clothing

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