Sunday, December 29, 2013
This writing contains very personal information about bodily functions not always thought to be appropriate for "open" discussion.
As LBD advances, bodily functions including the ability to urinate and defecate are affected. As we age, these areas of elimination are often a concern and our experience with Lewy Body Dementia has been the advancements move from the ability to control, to occasional accidents to both areas emptying simultaneously while toileting to loss of continence and need to have the person changed frequently. However, these are not necessarily progressive with LBD and there can be swings in these abilities just as in behaviors and cognizance.
Unfortunately, at least in Missouri, the "rule of thumb" seems to be checking "every two hours" which means, at least in our facility, since no one records when they actually checked but it's left to the Aide to do and if there's a shift change, far more time can pass, two hours can often become four to six hours.
Why aren't records kept. After all, in public places, there can be a sign on the door of a Restroom showing when it was last checked but we can't seem to place a sign within a computer record for this purpose?
Seems to be an easy process in this computer age we live in and one far more capable of recording who's really doing their job to the point of what was found (notations on whether the person was taken physically to the toilet or had to be changed due to "incontinence" and how often this was happening; observations on appearance of rashes, etc; even possible UTI's caught earlier due to frequency, smell or other notations).
Let's also talk about the "indiscretion" with which "checking" for urination or defecation is done on the Elderly who are partly or fully incontinent.
Out in a public area, CNA walks over, asks the person if they've (your choice; all are used) wet/pooped/urinated/peed/etc. Then, they may stick their finger into the pants and pull them open to "see" what they can or feel what they can. Although, if they choose to wear a glove, which some do and some don't, I can't for the life of me figure out how they can determine wetness through a vinyl covered finger/hand. This isn't necessarily done by all but done by enough CNA's to cause questions about their training.
Same happens with injections for Diabetes. Nurse (LPN) approaches dining table at dinner time with testing kit and takes blood sample from finger. Nurse returns for meds and goes back to table and asks or simply decides where injection should be. Last night, one resident said he wanted it in his stomach near his belly button so the LPN lifts his shirt and pulls aside his pants and injects him. He was seated at a table for four and this action was visible by everyone near by or who had adequate eyesight, including myself.
Dignity. Why are our Elderly treated as though their body isn't theirs alone any more?
LPN would say she "asked the resident and he gave permission". Actually, she gave him no choices.
He needed the meds; he knew it; he also knew he might have to wait a long time and that could cause medical complications if he didn't do it "her way".
Medications given identifying what they're for and what they are as residents sit at the tables. Easier for the Nurses to ensure those people who get meds "before" or "with" or "after" meals are administered but what adherence to HIPPA is there if this practice is done "at the table" and not at the "medicine cart w computer" directly?
I've seen facility Dr's "examine" and talk about "medical problems" out in the open area where all can listen and hear. What rights of the residents are being upheld when Dr's don't follow HIPPA guidelines? This sets an example the Nurses follow and the general staff see as doing other "daily personal functions" allowing infractions of personal rights.
Mom went from taking care of her own toileting including the use of a pad with her regular pants to a pad with "paper" briefs to deconstructed "briefs" that require tabs to open and close for easier changing either at the toilet or while laying down.
DIAPERS AND POOP. "Oh, XXXX, so much Poop. So, so much Poop today. When will it stop, XXXX? Oh, my. You just can't seem to make it stop, can you XXXX? So sad, XXXX."
How would you feel if you had even the slightest ability to comprehend this dialogue about you, your ability or lack of ability?
With LBD, comprehension and cognizance continually vary and at any moment, the brain can input and retain and even evaluate to some degree what is being said or done.
That's the greatest challenge, in my opinion, about this devastating and fatal disease, Lewy Body Dementia -- the great variances in cognition and reasoning. The loss of physical controls while the brain continues to make mental processing possible although on varying levels of complete and clear communication.
COMPASSION AND DIGNITY. As a society, we've somewhat learned even the smallest infant deserves to be treated with compassion and dignity.
As they grow and certain behaviors, like modesty, are taught and practiced, many are retained even when other losses are experienced.
With our Elderly, we expect they will "accept" and "allow" with Dementia ways of being handled and treated they would not without the disease -- or that's the summation of observations.
As we travel this road, I see many similarities between the very young and the very old (meaning those with developmental challenges as Dementia affects). With the young, areas of their brain are not yet developed; with the old, those areas of the brain may have been developed but now are somehow "blocked" or "removed" depending on the type of Dementia they experience.
Consider the differences between a caregiver for a child changing their "diaper" and a caregiver for an elderly person in a facility (or home).
There are many childcare manuals and books for Parents on children and a great deal of study on forming and dealing with behaviours and challenges; can anyone recommend books on these subjects for the Elderly with Dementia? Certainly not the "movement" started by Dr Spock and turned into many specialties and professions -- for the elderly versus for children.
We pay a great deal of attention to our children and minimal attention to our Elderly. Why? Do not those who have provided for us and created our society not deserve more than "shelving"?
How would you feel if someone "on a schedule" took you out of your chair or wheelchair, laid you on a bed and proceeded to pull off your pants and then the only remaining covering of your body, paper briefs and physically spread your legs apart to "clean you".
Yes, this is needed but you're not dealing with an infant and even as a baby grows, the wise parent/caregiver understands the need to verbally communicate with the infant/toddler about what they're doing or need to do.
Yes, the LBD adult may not comprehend and may emotionally react because that's the level at which they're momentarily functioning but the caregiver needs to understand where the resident/recipient of the caregiving is and at least try to spend a few moments reassuring the person by using Compassion and Dignity in providing a necessary service.
HANDS. Are for more than providing needed services, they provide care and express concern. Touch is a basic human need. If all you do is "clean up" or "wipe away" or "eliminate" and do not provide attention, concern, focus on them, they will react rather than work with and become more "hostile", "aggressive" and "attack".
Dementia often removes facial and voice recognition for many elderly but I've noticed TONE OF VOICE and CHOICE OF WORDS can be instruments of calming, soothing, establishing trust. It's interesting how even when Mom is in a "severity" of loss of ability which we're noticing more frequently now, she can respond positively or negatively depending on how she is physically and vocally approached and worked with.
I believe LBD has been hidden far too long behind the closed doors of nonrecognition BECAUSE we do not talk about all the symptoms and all the challenges along the way.
Mom didn't transfer into Final Stage suddenly or overnight. In fact, there are times even today when she could appear to be in the initial stage of the Final Stage and times when we're concerned we have only days or even hours left with her.
This, I believe, as I continue to write this Blog is part of the purpose of sharing our life with others. The ability to see, as it happens, how variable Lewy Body Dementia is and what concerns and challenges arise along the way.
Take what you need. Use what helps you. Give back through adding comments about your experiences. We welcome the sharing, the caring and the ability to take others beyond the closed doors of a devastating fatal disease now seen as being in epidemic proportions, Dementia, and Lewy Body Dementia receiving the acknowledgement and medical awareness this roller coaster family challenger provides all who come in contact. Walk alongside us. Talk with and to us. We're all headed in the same direction towards the unknown and what lies ahead for us and our loved ones.
Thursday, December 19, 2013
Her passage into the final stage of Lewy Body Dementia was like all other stages -- slow at first, highlighted by major changes, not always visible and often seeming to reverse. Even now we're not certain how far into this stage she's travelled.
Are we seeing the "new stage" when it begins? I think we're seeing it when we're really into it because the changes are more noticeable and seem to be more prevalent.
How far along are we on this journey with Mom? Are we really slipping into the final final stages? SNC Nurse Manager called and said she thought Mom was ready for Hospice. I haven't cried for a long time, not even since my husband's death have I really sat down and tears have flowed without any ability to stop them. I started to cry but since I was at work, I hid the tears until I could be alone.
We were unable to visit for two days and when we arrived, Mom was slumped over almost falling out of her wheelchair. I'd seen other residents this way. She couldn't communicate. Just two days had passed; she wasn't communicating as much, but she was talking before. She was eating or could be encouraged to eat; she even held and was able to finish both pieces of an egg salad sandwich.
Now she looks as though she's lost at least twenty pounds; why didn't I see this extensive weight loss? Was it because her clothes are the size they are? Some blame goes to the Nurse Manager who said Mom was holding at the same weight she'd been for so long just a few weeks ago.
Could Mom have lost that much weight without our seeing it happen? Yes, we'd both been busy and I now had a full time job and my daughter had a very busy part time job so we weren't stopping by every day. She was eating and we were always told she ate well even when we weren't there to feed her (at times when she slipped into this behavior) or encourage her to eat (when she could hand feed herself even if it meant picking up food meant to be eaten with a utensil, it was good to see her have this ability).
Hospice. It's such a final step. No matter what they tell you about people going "off" Hospice.....at Mom's age, this is most probably not going to happen. I don't like the limitations. If we accept Hospice we can't take her or send her to the hospital for an infection.
Mom and so many others have had UTI's.
I see UTI's as not something that has to be a part of growing older and incontinence. Am I being realistic?
If those who are responsible for her care checked her more frequently and didn't let her sit in her excrement or urine, I don't think UTI's would be so frequent. I see how short staffed they are; I hear the men and women beg for someone to take care of their needs. I hear an LPN tell someone to "be quiet" and "I'll get to you". Twenty minutes later she's still distributing medications and no one has helped the person who called out.
If Mom's Caregivers at the SNC really watched her as closely as we always did, they'd see the changes, catch the eye infections and other infections. Most of all, they'd monitor her illnesses/infections as a medical facility, which in Missouri a Skilled Nursing Center is, should and alert the Dr in charge the medication did not work.
We can't not help her. Mom's wishes have always been to seek medical help for infections. We'll make the decision and take her to the hospital -- even though she'd just been about ten days ago.
I'm walking the road with Mom and I'm not that far behind even though Mom had me later in life. I'm afraid for her. I'm afraid for me. I'm afraid for you.
Sunday, October 6, 2013
Just knowing people are out there reading our story is so uplifting.
I'm working on ways to make it more informational. It's been a learning experience and I'm growing each day towards a better blog.
I've mentioned, I believe, my husband's passing in 2011. Well, each fifth of the month I still feel the challenges of his loss and wonder what I could have done differently especially when I did not see what was being done by Julia towards my Mother.
It's a continuing journey, from the fifth to the tenth of the month, from the date of his death until the date of his funeral. Yes, it's grief, but as my daughter points out, it's also comparable to Post Traumatic Stress Disorder due to the many destructive efforts of Julia then and what she's doing even now with Mom.
Julia stood by from February 2010 until late October 2010 and watched at different times as my husband received Home Health Care. Julia was/is a Registered Nurse. Julia had to see the gravity of the medical situation from being around our family for so many months. Julia knew we were holding on day by day and often hour by hour; I have emails we exchanged I read again and again and see now more clearly how the information I shared with her about our challenges gave her what she used to abuse Mom then and now.
It sounds strange, I know, but I guess my hope we could overcome my husband's many challenges was stronger than my ability to see what was going on around me with my husband and with my mother.
I am grateful my mother taught me to always keep moving towards the light and what is right in life. She taught me not to give in, never to give up and always to believe the path I'm on will lead somewhere positive. It isn't what she said, actually, it's how she lived her life, how she modeled life for me.
We found out in March 2012 after overcoming great challenges I've detailed and am still listing in this blog that Mom had late Mid to early Late stage Lewy Body Dementia. An RN specializing in taking care of Alzheimer's and Dementia men and women as a caregiver would surely have recognized the Dementia. We believe Julia knew, we know she constantly told us there was no concern and that Mom was "perfectly all right; very good for her age compared to others" to gain financially and profit personally from controlling and manipulating others.
Julia's strategy isn't working. We have the advantage even in trying times.
October is Lewy Body Awareness Month. Please share the message that Dementia in all its forms and especially LBD is a devastating disease that often masquerades as reactions to medicines, other illnesses and even changes in life as we experienced. LBD must be taken seriously; I still hear in my inner ear the words of a Missouri Department of Health and Senior Services Adult Protective Worker who even has a Masters in Gerontology: "If it isn't Alzheimer's, it isn't Dementia." Please visit: www.lbda.org
Tuesday, September 10, 2013
Please forward this entry to as many people as possible. We all know the power of the Internet. Please use this power to gain recognition for Lewy Body Dementia!
This past week NBC's Today Show focused on Alzheimer's and devoted four days to special presentations on the disease.
Maria Schriver was a main presenter. As a well known personality, born into a highly recognizable family and having experienced coping with Alzheimer's, she is in a position of high visibility and her achievements in media can greatly benefit awareness of Dementia as THE disease, not just Alzheimer's.
Dementia is like Cancer once was: Often not talked about, very little known about, consisting of varying types with some having greater advocacy and some types thought of as more "devastating".
The Brain is the New Frontier. Before the CT and MRI, we had no means to see inside the body or the brain. Even now, age and related medical challenges may deter the ability to gain information in these ways.
Misdiagnosis of the type of Dementia and even greater numbers of individuals with undiagnosed Dementia are causes for great concern.
American Society must change its viewpoint of mental challenges, Dementia included. More Geriatric specialists are greatly needed and not just Doctors; Nurse Practitioners and RN's with this specialty are greatly needed. More in depth training of CNA's and those providing the basic quality of life daily care procedures is critical; they are the ones who often have first exposure to changing/changed or shifts, in physical and/or mental abilities.
Long Term Care Facilities with medical staff including Doctors aligned with the facilities must be required to evaluate accurately and thoroughly Senior medical conditions including the different forms of Dementia.
Continuing and ongoing education requirements for all types of Dementia should be more in depth, more current and inclusive within the medical community.
More educational opportunities for family members and caregivers of residents within Long Term Care facilities concerning Dementia and other medical and social challenges faced by residents should be required.
Unlike Cancer or Heart Disease, Brain Diseases affect an area of our body most people believe should be "controllable" and when not, something to be thankful for not having or seeking a pharmacological way to "handle and control" the "problem".
We believe knowledge is power.
Prominent people like Ms Schriver raising their voices for Dementia as a collective disease of many types, all requiring understanding and medical action, is critical to managing this devastating challenge undermining the quality of life of those suffering with the disease of Dementia.
Dementia breaks apart families, many of whom have members who simply do not understand the variations and challenges of different types of the disease.
Few people understand the differences between Alzheimer's and Lewy Body Dementia and how LBD can radically fluctuate; LBD has often been compared to a roller coaster ride.
Wednesday, August 14, 2013
She turned 99. A major birthday. We often used to tease one another about advancing birthdays saying some we wanted to reverse (when the second number was smaller than the first, like turning 42 into 24), the ones you didn't want to reverse because they made you older, like being 45 and a reversal would be 54. And, then there were the "irreversible" doubles of a number like 44, 55 and now for Mom, 99.
Mom's mood swings can be many and can occur all within one visit. In what we now know were the much earlier stages of LBD, Mom would show one of these "faces" and we attributed her behaviours to not getting enough sleep, having an infection or other physical challenge or simply just believing like everyone else she had her "good" days and her "not so good" days. After all, everyone said, she is getting "very elderly".
We were not seeing advancing Lewy Body Dementia because we'd never heard about LBD and Mom's actions certainly were not "typical" AZ and therefore not Alzheimer's, the only form of Dementia anyone seems to acknowledge or recognizes.
Then, too, we had the appearance of Julia Hed....into our lives and what we experienced as financial abuse, emotional abuse and undue influence taking advantage of Mom's condition, her loss of Executive abilities, that function of the brain to make decisions, to rationalize, to consider, to compare. contrast and arrive at decisions based on analytical processes.
Julia isn't and wasn't the only person who cannot see the forest for the trees as an old saying goes. As I continue to advocate for Lewy Body Dementia awareness, I rarely find anyone who's heard about LBD and most people have no idea there are many forms of Dementia.
We even had a Department of Health and Senior Services Adult Protective Worker, a young man, with a Masters in Geriatrics, tell us if Mom didn't have Alzheimer's, she didn't really have Dementia.
Ignorance. It drives our society into problems and situations costing the loss of individual freedom, family relationships and significant unnecessary financial increases and expenditures. Ignorance that's taught at even the higher levels of our educational systems, apparently.
Mom's face including her eyes, mouth and even her posture and body language are involved in these Faces of LBD. It's like watching a character actor or being in an acting class watching someone who's told to portray various feelings using words and body language. Only there's often no ability to immediately stop the action as is typical in a class or with someone who has the ability to work through feelings and emotions by talking them through.
Like so many other human actions and emotions, it's not always easy to see what a person might do or say as sometimes the same postures, facial expressions or even language might trigger one response OR another. It's difficult to anticipate when a delusion is going to come forward into a sometimes otherwise common, everyday conversation.
Sometimes, out of nowhere Mom says something like she did the other day, "Did you know I'm getting married again? Do you know to who? To XXXX's Boss. He called the other day." Then she goes into a short story that's somewhat disconnected, somewhat blurred in content but still has elements of a storyline.
I did notice XXXX's "Boss" (XXXX being my son) has been mentioned before in Mom's delusional conversations. He's been someone who's commented on how valuable XXXX is to the company. Of course, that was and is because my son is "saving the world" -- but that's another story involving how he travels so much because he's working for our government, etc. Far from reality but somehow a part of Mom's repertoire of storylines. She has many. They seem to develop and change as frequently as Julia Hed.....visits. Connectivity?
The ability to rationalize, reason and analyze can appear at times but it's no longer accessible through suggesting these methods be employed or through the individual being told to use these skills and methods. The times of these "skillsets" being used and applied seem to have completely disappeared.
Here's a brief synopsis of observations on her birthday when my daughter, one son and I spent time with Mom at her facility and took her out to dinner in a restaurant we thought she'd enjoy:
JOY: In times past, seeing, hearing or the mention of a person's name elicited a smile and body language of welcoming and happiness. This time, verbally telling Mom her grandson had come to visit, making a stop on his way flying to another city on business, clearly did not register the first or second time I told her. His coming close, bending down and talking to her also took several minutes before she realized what we were saying and who was visiting. Then she was "lit up like a Christmas tree" and of course, wanted to immediately see her great grandchildren asking where they were in the room. They, of course, could not come.
EMOTIONAL VARIATIONS AND SENSE OF CONTROL AND SITUATION: Mom laughed and cried that day as she has on others often moving from one emotion to the next simply with another thought coming forward and then another. When she goes into these Mood Swings, it's very difficult to redirect her. Sometimes I've learned it's best to say I have to leave, take my things, go out the door of the room, wait about five minutes, reenter as though I'm just arriving and this can break the downward spiral she's entered.
DEXTERITY IN COMMON MOTIONS NOT FREQUENTLY USED: Loss of motion and ability to sequence have been evident for some time. I've written about Mom's inability to move her legs and her brain sending messages her body does not respond to.
Watching her handle a wrapped birthday gift, something she'd done for many years (wrapping and unwrapping) I saw her brain struggling to function with deciding what to do, how to do it and what to do next.
She looked at the package and admired it verbally but didn't understand it was to be opened. When asked to open it, she didn't know how and did the common LBD response of "I don't know where to start" and laughing. LBD, in my experience, is full of deceptions, practiced and perhaps simply another part of the survival instinct part of the brain coming forward.
Placing her hand on the package did not stimulate the thought process for the procedure. Helping her by tearing off a piece (demonstrating the desired action) resulted in her being happy to see the package being opened but not the response even some children make when this demonstration is given of grabbing and tearing apart the package themselves.
Placing her hand in mine and helping her tear also didn't work. I finally gently took her hand in mind, we grabbed a small area and tore a long piece and repeated this procedure two or three times. Then I replaced her hand on the package and she felt for a piece and slowly peeled it away.
Interesting. A birthday package. Usually a delight in finding out what's inside and can't wait to open it now becomes a visual and physical challenge; something unfamiliar as a daily routine but something known to have been done before but that putting the information together and accessing the correct action/response is now becoming more challenging.
VISUAL STIMULATION. We chose a restaurant that wasn't too dark or too bright and where we knew the background music and level of "patronage" noise would not be high. We avoided choosing a restaurant with a bar directly within the restaurant area. We went early; Mom's used to eating around 5 PM and we felt arriving close to 4:30 would allow us some time to get settled, make choices and be almost finished before more guests arrived. Thankfully, her actual birthday wasn't on a weekend this year so that also helped.
CHOICES: We've found using two choices at most works best with food and clothing. This time we decided to do a "family meal" which provided two entrees. We wanted Mom to be involved as much as possible so we asked her if she would like "A" entrée or "B" entrée -- when actually both would be provided. In this way, she had a choice and we had less challenges; we also were seeking to cut costs as this past almost three years since my husband's death and the almost total rupture and tearing apart of our lives financially (especially with the complications of Julia Hed......'s accusing me of financial and emotional abuse, tearing Mom from our home and causing my bank accounts to be closed; see writings on JH and Abused Family.
SELF FEEDING: Mom can still feed herself most of the time. She often reverts now to treating everything she eats as "finger food" but at least she's still capable of remembering this activity. This night, though, perhaps because she wasn't in the facility and her brain "recognized" being in a restaurant, I notice Mom is using her soup spoon to eat (we cut everything up and provide small portions on her plate so she can push it around with a piece of bread and into her spoon) and she's doing fairly well. Of course we've asked for another cloth napkin and put it on her front and one on her lap because with her shaking of her hand she uses to feed herself, food inevitably lands on her front or in her lap. I see my Mom somewhat as she used to be in social situations. She's not carrying on a conversation, her dining skills are greatly affected by her physical limitations BUT she's seeming to take in a little about her surroundings and even makes a comment about being glad to be back and how she's enjoyed dining there in the past.
RANGE OF MOTION. We work through the challenges of moving Mom from her wheelchair to the car and from the car to the wheelchair. For some reason, getting out is easier usually than getting in. Guess it's because she's coming forward into something she recognizes and is familiar with while getting into a car is a skill set she uses less frequently.
I discovered a way we can usually get her into the car and sometimes it even works when we or the facility has difficulty moving her from her wheelchair to the toilet or from her wheelchair to her lift chair. I can't remember how the idea came about but I asked Mom to put her one hand on my shoulder and the other around my waist and "DANCE" with me.
For Mom's generation and for many of us, dancing together as a couple is partly learned and partly instinctual. It's a learned skill involving various brain activity and apparently this functionality remains for Mom.
What's interesting is sometimes when her feet won't move (Mom says her shoes stick to the floor/ground but we know it's the brain/body message sending/receiving that's not functioning) using this directive of "Let's Dance, Mom" and putting her hand on my shoulder and the other around my waist keys her brain/body to move and allows us to position Mom so we can turn her body around and sit her down in the front seat of the car or on the toilet or in her lift chair.
LAUGHTER AND TEARS. During our visit Mom laughs a lot. Many times she's "grinning" but her eyes seem to be not exactly where we are; perhaps she's fantasizing about the moment in ways we cannot see through our eyes.
Her mind wanders so much; changes onto so many subjects; it's when she thinks of something sad or that concerns her we find she can begin to become emotional and sometimes the escalation is into sobs and lots of tears. But this can often end almost as abruptly as it begins. Again, it's like being with a small child. What we used to refer to as "tantrums" in children, "unreasonable actions" and more appear more frequently. Interesting how we look at these in children's behaviours as "choices" -- wonder if they really are????
Some of the tears are most probably because my son will be leaving and his visit is so short and they're, not of his choosing but because of the distance, so infrequent and she misses him. Mom lived with us all the years of all of our children's young lives and through their college years and beyond. She's been a close part of their lives for more than a third of her own life. Of course she's moved to cry when her mind thinks of his leaving. What's more difficult is that like a small child she can be somewhat inconsolable because she, too, doesn't have that concept of time -- there will be another time when the can be together, a time to talk on the phone, etc.
However, my son does not really understand Mom also realizes her "time" is becoming shorter and shorter and therefore her feelings of "losing him" and us is a valid feeling and one that is difficult to work through because she does not have the "Executive function" of her brain, she does not have the ability to reason on our level.
How much we can learn from Early Childhood research if we would just realize the similarities in working with children at various ages and stages and with the elderly as they move through the various phases of Dementia, Lewy Body and others.
CELEBRATE LIFE with the ones you love. Make Memories To Last A Lifetime.
Even when the one you love cannot retain the times spent together, the ways in which you provide and care about them; even when they tell you or others "no one cares about me", take strength in knowing you are providing Love, Care, Compassion, Concern and above all else, you are serving as their Advocate and ensuring their quality of life is far better than if you walked away, infrequently called, occasionally visited and simply "moved on" believing your loved one didn't even know you were there or because they told you to "go away" or "you're not my daughter/son/ etc".
I've been there. It's frequent territory with Mom's ever advancing Lewy Body Dementia. Many days are not easy. Some days seem impossible. I just have to keep telling myself those days pass as the others do and in the end I have all those days I've been able to share, time I've been able to spend with Mom and I will cope and survive and thrive.
I will share with others my journey and I will find a way to enable others who will walk this same road to understand LBD through this blog and other advocacy.
Tuesday, July 30, 2013
JH and I exchanged over three dozen emails from mid February 2010 until the fist part of June 2010. They're cordial, no questions about Mom's feeling "abused" or concerns about Mom's treatment.
Each time JH took Mom out for a couple of hours. There were frequent long times in between those "visits" and one time four or five weeks elapsed. JH never called, never mentioned she'd be "away" or unable to visit. She just simply didn't email, didn't call and seldom even mentioned she might be "out of touch" for a while.
So, the question remains: Exactly when, Julia Hed...did you believe Mom was being emotionally and financially abused by me? What was your first clue? What evidence did you have? What made you not even question a mid nineties woman's concerns after living almost forty years with her daughter and her family's sudden "abuse".
The Most Important Questions: How could you return an elderly person to what you saw as so abusive a situation you had to call the Elder Abuse Hotline?
Why didn't the State of Missouri act immediately and remove her from the home?
Why didn't someone immediately come to visit the home?
Why didn't the authorities contact a Judge and get a Court Order to protect Mom?
How did you convince the DHSS of the State of Missouri to work with you?
It was most important you keep a low profile. You practice that daily with your nondescript appearance you blend in to most surroundings.
What, I wonder, did you tell the authorities to convince them Mom would be OK if she could just be placed permanently into a Long Term Care Facility -- where, of course, you'd have access to her when you wanted, for how long you wanted, to try to see if you could find additional money or other valuables.
There's also your Mission to convert Mom .... before it's too late.
You're driven by the need to convert Mom to the Catholic Faith. That's never been Mom's choice; we honored her choices, her wishes and never took advantage of her as you have done.
You tried posting a picture of The Divine Mercy in her room when she first went into an SNC. You left a "religious ring" in her drawer. You left other little articles of "the faith" hoping these "symbols" would work a "miracle" and bring yet another "lost soul" into what you believe is the One, the Only, the True Faith.
Mom has a right to believe as she has always wanted; shame on you for preying upon the elderly in their last years of life for your own personal wants and needs. Mom has her religion; a faith she's had since she was a child; the faith of her family, of her choice. She does not have to be a Catholic to be "saved".
You're good at what you do, Julia Hed....but not good enough.Your weakness remains you serve yourself instead of whom you claim to serve and in that way, you will always lose the final point in this game you play with the lives of people.
My emails reached out for support during the time my husband was critically and chronically ill as he was making his final journey with us succumbing and leaving us in January 2011.
My emails shared information and so did my conversations with Julia Hed... when she'd come by our home and when she'd take Mom out for a couple of hours; a "gift" of time I thought Julia Hed.... was giving our family as we struggled to work 24/7 caring for both my husband and Mom.
JH seemed so helpful; I called her our "guardian angel". She volunteered to lead the group and make all the arrangements for delivery of meals from the SVDP (St Vincent de Paul Society) from our Church when my husband returned home from over 100 straight days in the hospital and a month in Rehab with many ongoing medical conditions.
Now I See: volunteering to manage the delivery of meals put her in close and consistent contact with our family and guaranteed she'd eventually gain access to my Mom; access she'd tried to gain before but was denied.
Julia Hed.... is a strategist in life as she most probably is on the tennis court; her continuity at an advancing age, her early achievements and induction as the first woman into her University's Tennis Hall of Fame are indicators of Julia Hed....'s ability to outmaneuver opponents. She caught us off guard, she saw our weaknesses and vulnerabilities caring for my husband in his last months on this earth and for my mother who was progressing in her journey with Dementia, unrealized and undiagnosed as the challenging Lewy Body Dementia we've finally come to know and understand.
Tennis is a game of strategy; knowing your opponent's strengths and taking advantage of their weaknesses. Watching, waiting for the opportunity and striking when it's most advantageous. JH, in our opinion, applied and applies these same tactics to using undue influence to gain the trust and confidence of Mom while surprising us through her hard striking and unexpected actions.
When she changed to phone calls, from June 2010 to late October 2010, I followed her lead; I didn't realize she was moving into another phase of Elder Abuse of my Mom and I was being set up for the "winning point" -- taking Mom to our bank and removing my Power of Attorney while also opening a safety deposit box in her name and Mom's with JH keeping both keys.
Julia Hed....is a Registered Nurse with a degree from a prestigious University with a Nursing Department. Julia Hed..., by her own admission, has worked in positions of "authority" in a large East Coast hospital; more than just an RN, perhaps a Nurse Manager or another position overseeing other Nurses.... Julia Hed... never shared complete information about herself. She was and is a Eucharistic Minister and a Lector; two highly respected positions. Our Church, as has been the case during other violations of individuals through abuse, turns its back and refuses to protect yet another vulnerable portion of society, our elderly.
Julia Hed...... has worked for years with men and women with varying stages of Dementia and Alzheimer's, by her own admission. She works/worked for families who live/lived too far away to provide "in home" services as Julia did.
I discovered Julia's License to practice as a Registered Nurse had expired in 2009 and not been renewed until mid 2011 -- right about the time she started really becoming involved with our family. Wonder if the State and the families she served during that time were/are aware of that expiration; Julia told me she was working with men and women, giving meds and doing other "nursing" duties. She offered to do them for us but we didn't need that help -- this was months before she entered our life with the SVDP delivery of meals.
Julie Hed..... studied psychology as part of her Nursing curriculum and learned how to gain patients trust and to do what was needed. Julie learned how to talk with the elderly, how to gain their trust. Julie honed her skills developing trust in relationships with relatives of those she worked with. They trusted her with varying levels of decision making and providing her "advice" including when she thought it would be best to move into a Nursing Facility (according to what she'd shared with me) and even with assisting in the sale of articles and even at least once with the sale of a home.
Take a very elderly woman who was used to being the "center of attention" with illnesses and medical conditions; whose family constantly tried to provide everything she needed or wanted and who was now called to divide their time and attention for another family member. The Perfect Storm. The Perfect "Mark".
In Part 4 I'll write about how Julia Hed..... was so good at what she does she convinced the Missouri Department of Health and Senior Services to work with her and to participate in the abusive actions then and is using the DHSS Rules and Regulations for Residents of Long Term Care Facilities to continue to emotionally abuse my Mom and our family.
Wednesday, July 17, 2013
Her mind continues to go back to believing she's leaving the facility to live in a house provided by her "husband"; although these days it's not quite clear if they're still married, Mom's gotten a divorce or he just decided to give her the house and went somewhere else. This is Mom's "imaginary husband"; her one and only husband passed decades ago and did not have the same name.
Again, the longer the time frame between visits from her undue influencer, Julia, the less we hear about Lawrence.
Then when Julia comes to visit, the scenario shifts, changes with additions and variations: Mom's pregnant, it's a boy, "he" will be so proud as he's always wanted a son, it's a girl, a second girl (I'm the one, the only, the girl, the daughter, the real one, that is).
This delusion is very complicated and as I've mentioned before I'm of the belief it's one that's been instigated by Julia, the woman who continues to visit Mom and each time she does we see marked changes in Mom's behavior and in what she "believes" is "real".
Also, all my Internet searching and asking people who caregive for someone with LBD, the hallucinations and delusions are not "Soap Operas" changing and expanding in storyline like Mom's are doing.
HOWEVER: If anyone reading this has a mother, daughter or other loved one or cares for someone with LBD or Dementia and is experiencing similar "soap opera" hallucinations or delusions, please add a comment and share what you're experiencing.
Mom can't remember her "husband's" name after time passes and/or Julia hasn't visited for a while. But after Julia visits, Mom gets new ideas about her marriage including the most recent one of her being pregnant. Yes, pregnant at age almost 99. When asked, she'll tell you of course it's possible because she's married and that's what can happen when you're married.
While that concept could be a stored memory, other details seem definitely "planted": how she'll be able to carry the baby even at her advanced age because she's been checked by a "female Doctor" who said they have things they can do for her and give her to help her keep the pregnancy.
There's that "female" figure, again. SHE always plays a part in Mom's hallucinations and delusions that involve the "marriage" and "the pregnancy".
Oh, and another scenario has come up and has changed again but is still based on information from before Mom "got married". Mom is going to work! Yes, and it's now in a little town she knows very well. They've put a "Houska" (one of Mom's aphasia words she knows what she means but no one else does) there and now she'll be able to support the baby. Guess that means Lawrence is out of the picture?????
Most importantly: Lawrence was not someone Mom talked about or thought about. Except for a brief time period of about two weeks when she was around sixteen or seventeen visiting her brother and his wife in Detroit from her small rural Illinois home, she hasn't heard from a man with that name or seen him and that's about 80 years! Looking up the name on the web, it appears he passed many years ago.
Mom most probably did talk with Julia about Lawrence when Julia took Mom out for the two hour "visits" she used to make with her while Mom was living in our home. After all, for a total from February through October 2010 of almost forty hours spent together in two hour segments, there was no shopping, activities or events attended, all they did was sit and talk, so Julia was able to gather a great deal of personal information about Mom's life over the years.
The average person can carry on a conversation about a great many things in that period of time but a very elderly person is more easily led to talk about "the past" and especially "their past".
As I've said, anyone who could deceive me as well as Julia did and get my Mom to believe she wanted to move out of the home she lived in with our family for almost four decades, is quite the manipulator and controller.
I'd arrived at the facility to find all Mom's clothes folded and stacked on her bed along with a few other items.
She's had a box packed with some other items for many weeks as she went through other times waiting to "move out".
What's challenging is Mom folds the clean and the dirty clothing together so I try to sort through everything. In times past, she's told me not to do that; to leave it be; she wants it there, and I do.
This time, though, she sees what I'm doing but doesn't question my rehanging and sorting. Should I be concerned? Is this an advancement? Could it be the UTI she's been treated for or the now prevalent, floor wide respiratory infection going around? Mom's coughing so I'll go for the latter.
Mom was in her lift chair when I arrived; she must have been in her wheelchair when she folded all the clothing. She couldn't reach the bed from her chair to do that work.
Someone had to move her because she can no longer move herself. There was a horrible smell and Mom said she needed to go to the bathroom. She didn't realize she'd already went and apparently more than once and had both urinary and fecal incontinence. It was so bad her paper pants were in pieces all over the chair.
How that happened I can't begin to imagine as she was wearing slacks, a shirt and a jacket. Someone failed to check her like they're supposed to.
She often doesn't realize any longer when she needs to use the bathroom and I've found her like this several times in the past few weeks. I try to get the staff to adjust to her changing needs but it's often like talking to a wall.
It sounds terrible, but the fact she often doesn't realize what's happened is a blessing; she'd be so concerned if she did realize. Not sure if this is a permanent or temporary development; you're never sure with Lewy Body Dementia.
It's either amazing or a result of another conversation during a visit with Julia about "moving out" of her current facility, but Mom cannot remember what day it is or what month most of the time but she seems to know it's the end of another month and she has to move out so she won't be charged and will get to have her Social Security money to spend on what she wants rather than go to pay for the place where she doesn't want to stay.
Mom seldom talks about money but it seems like after Julia visits, Mom focuses on having money, using money, getting money and sometimes on paying for something she "thinks" she wants or needs (like the dresses for her "wedding").
Mom added to this scenario a few days ago by telling me she'd been to the bank and deposited her check and got some money out, a few dollars. Of course, she hadn't; she can barely stand right now; this is most likely a memory of the time she and Julia went to the bank, that fateful October 26, 2010, when Julia without our knowing took Mom and opened a safety deposit box keeping both the keys and not letting any family member know. The day she had Mom take money out of our home, money we'd set aside for Mom's burial or other needs.
Why does Julia continue to visit Mom? Julia says Mom is her "friend". Julia's in her fifties and Mom is in her late nineties; Julia never attempted to be my friend and I'm more of a contemporary with a daughter the age of her daughter.
Julia has made every effort not to have any type of relationship with me or my daughter. Julia has purposely and intentionally visited Mom at times she knows we won't be there and if we do come in contact she doesn't speak to us except to say it's her "private time" to visit with Mom.
LBD doesn't progress like Alzheimer's; often various cognitive functionality remains. Is Julia afraid Mom will recall totally what happened and put together the pieces of her missing Social Security money and how Julia was the one and only person who had access to it besides Mom?
Tuesday, July 2, 2013
So different from all the amazing places in this wonderful world Mom and I saw both together and separately when we lived in a different time and she lived in a different place.
Just reread my first blog post. April 9, 2013. Not even three months ago.
I've written volumes about what's happened as it happened but never put it "out there" for everyone to see before starting this blog.
It was my way of trying to put the pieces of the puzzle together along with researching and trying to find someone, anyone, some organization, any organization, who could give me direction, guidance and above all, hope.
Before the blog I was still floundering in the remnants of the Tsunami Julia H. created in our family's life. A violent, destructive force of action moving everything in its path to another location; there is no control, you ride it out or you perish within its force. Then, comes the end that's the beginning of picking up the pieces of your life as you try to survive, one day at a time.
Only with Julia H., it wasn't just one Tsunami, Julia's kept creating more storms and more upheaval along the way. She's still trying.
Today, we see beyond what Julia does; we have more ways to ride out her storms and we continue to search for ways to put an end to her wrecking havoc on our lives. We work each day to stop her from finding other targets or marks for what we believe are financial and emotional abuse of the elderly.
A word to those of you who may be enduring similar challenges: take each day as it comes, the good and the bad, believe there is an end and you are reaching out for it by seeking truth and bringing it into the light.
So much seems to have changed and yet so much is the same. With Mom's physical and mental abilities. LBD is a constant roller coaster so it's really hard to predict or even observe if a specific "change" is permanent or temporary.
Perhaps I should be grateful for the latter. I've read about the projected road ahead. I've travelled that most difficult part of that road, end of life, already, with someone I love.
It's not a journey of choice; it's a journey of life.
What I'm trying to discover now, on this part of our "trek", concerns the hallucinations and delusions of Lewy Body Dementia. So much that's written is general in nature and what I'm looking for are commentaries from caregivers as the experiences are happening.
Relating that LBD patients often see distortions of facial features or other physical features and attributing that to possible vision challenges and the brain's creating the "illusion" is not as helpful as having people who've experienced these hallucinations and delusions specifically detailing what they are, when they occur and the physical and mental abilities or losses also observed.
I'll detail Mom's vivid hallucinations and delusions in an additional entry.
AN INVITATION: If you or anyone you know has or care gives for someone with LBD, please leave a message and detail your experiences.
Sharing our living with LBD serves as the best guide for all of us and will hopefully encourage the medical profession to examine more closely the mental and physical challenges of Lewy Body Dementia.
Monday, July 1, 2013
Anyone can report; certain professions directly involved in providing services are mandated reporters.The General Public is told it's perfectly all right to call the Elder Abuse Hot line if they even "think" there might be elder abuse.
Unfortunately, at least in the State of Missouri, the people responsible for investigating these reports have been and continue to be inadequately selected for their positions of responsibility determining changes in human lives and inadequately trained in Geriatrics including Dementia in all its forms.
Seniors need protection. Elder Abuse Laws are an important means of protection. Systems and Procedures leading to disruption of life of individuals and families due to intended or unintended negligence in due diligence regarding Elder Abuse Hot line Reports must be recognized and Statues must be drawn to protect the innocent as well as punish the guilty.
Abuse is defined by the State of Missouri on this page. It specifically states Abuse is "injury or harm". The online dictionary defines "injury" and "harm" as significant actions on the part of someone against another which inflicts damages. Missouri Law is written to attempt to protect Seniors but it also protects predators using Undue Influence and provides a means through which they can use the Law to their advantage.
JULIA, WHAT ABOUT MY DAUGHTER AND MY HUSBAND? My daughter dropped out of college to help with the 24/7 care of her Grandmother and her father. Why didn't you cite her as an abuser or at least an enabler?
As my daughter says, she was in her twenties and should have been considered someone who contributed to the abuse, allowing it to happen, an enabler, or possibly a participator.
What did you say that excluded either of them from your allegations?
Why didn't the DHSS even question my daughter about possible abuse of my Mom by me?
My husband had contact with many people including friends, relatives, members of our Church and others. Why wouldn't he ask one of them to report Elder Abuse of my Mom as he would have witnessed it.
He had a cell phone; I wasn't always with him; why didn't he call the Elder Abuse Hotline?
My daughter was constantly in and out of our home and had her own cell phone as well. If there was abuse as you claim, why didn't she file an Elder Abuse Hotline report or contact someone from the DHSS? She'd met with them when they visited our home at my request to seek further care and socialization for Mom.
As an adult, why would she allow her grandmother to be abused in a home where she lived for so many years?
WHY, JULIA? Why did you continue to return a very elderly woman to a home where you believe she was financially and emotionally abused?
How long was it from the date you made the report until you took her to open a joint safety deposit box and remove my POA?
Why did you walk away each time and if you believed what you said, "endanger" Mom? How could you if you believed what you reported?
Why didn't you contact a charity you supported, ALIVE, or Catholic Charities with whom you're very familiar?
He was a Senior; he was incapable of protecting himself, he was also somewhat isolated in our home although attended by Home Health Care a couple of times a week and numerous returns for hospitalization.
Mom spoke with many people without my being present and yet there was never a question to me, never a report to the DHSS about suspected "abuse" generating an investigation?
In fact, there was no contact from the DHSS that wasn't originated through my efforts to seek more medical or social services care for Mom before and during the time until we discovered your actions in late 2010.
What exactly were the specifics of the emotional and financial abuse, Julia?
Mom never paid one cent of her Social Security and she came into our home with no savings and no source of income from the age of 57 until 62. At age 63, Mom began travelling the world: her first trip was to Hawaii and the cost was more than her total yearly accumulated monthly checks for the preceeding year.
Each year after that until she was 87, Mom travelled and used all her SS money to travel the world. She's been several times to Europe (Western, Central and Eastern); Cruises in the Caribbean, Greek Isles, on European Rivers, on the Nile in Egypt, to Alaska and in China.
Mom had her own private room, double bed, dressing table with chair, nightstands and several lamps for reading and good lighting, carpeting throughout, a walk in closet, a double dresser, a TV and remote control, an automatic lift chair, a railing was installed to assist her lifting her body to a sitting position on the bed, guard rails on the tub, different types of shower chairs and frequent bathing, installed rails on toilets she used, safety rails installed, all area rugs removed, higher watt bulbs installed to ease sight. As she aged, steps were eliminated on the outside of the home and installation of a board walkway allowing easier departure and entry, carpeting was removed from steps leading from one level of the home to another, breakable items were put out of reach. This only begins a very long list of adjustments, additions, provisions and inclusions we made as Mom aged in our home, in the home she used to love to call "her home".
Did you possibly misrepresent your credentials or work in some way to cause them to act so irresponsibly and unprofessionally?
Tuesday, June 25, 2013
Writer's Note: 1-26-15. Noticed a few days ago additions to Missouri State Statues requiring "imminent danger" for the Elder to be investigated. Did not find any definitions. Did not find any references to Guidelines, Systems of Procedures for the DHSS or the Adult Protective Worker and the effect of this "change" is 2017.
Missouri DHSS guidelines for hiring entry level people given the responsibility for making Medicaid decisions don't even require a college degree. These "workers" aren't required to have a degree in Social Work, undergraduate or graduate or to be a LCW. They can have a GED and a few years working with the general public (fast food or retail gets a State job determining the lives of individuals and families?). One year of work at the DHSS and a few internal courses and they can become an Adult Protective Worker.
Writer's Note: 1-26-15. I've discovered in recent months that Medicare provides specific lengths of time for "Respite" and that Respite is for the "family' and not for the "Senior".
DECEIT AND DECEPTION ON THE PART OF THE DHSS. Without investigating, without any interview of me, my daughter or my husband, who was alive at the time and living in the "same environment" and in a much more weakened and "vulnerable state" and also a Senior under Missouri Law, I was told Respite would be good for Mom as we'd asked for additional Adult Day Care time and the APW suggested this as an alternative.
She's been diagnosed with Lewy Body Dementia; it's in very advanced stages; it had been going on while you, Julia, kept telling me there was "absolutely nothing" wrong with my Mom mentally even though she was exhibiting classic (as we now know) LBD symptoms of hallucinations, delusions, difficulty with her gait/walking and other symptoms.
Everyone should visit the website of the Lewy Body Dementia Association to understand this Dementia. People with the disease can appear to function quite well; someone, however, working with men and women on a regular basis with Dementia and Alzheimer's as Julia did, would see these "guideposts". A Registered Nurse trained in one of the top Nursing Schools in the US as Julia was and specializing in caring for this group should definitely see the Dementia.
My life was turned upside down. My character and integrity were assaulted.We suffered irreparable financial loss. Yet through working for extending providing a better life for other Seniors, I’ve found a beginning closure and made lemonade out of one of life’s lemons.
WHY, JULIA? Why deny making the call reporting what is looked upon as a crime? Or, if it was a “mistake”, acknowledging the mistake, if indeed it was one?
I know you've been a highly competitive and capable tennis player since college (possibly even before) and that you are very good at evaluating your opponent and playing to their weakness while advancing your game.
Human life is not a game, Julia; Seniors are not to be used like tennis balls.