My Story of Anne

This is the story of how I met one of the ladies who is the inspiration behind my Facebook page. I don't have a picture of her, but this quote sums up this story. It has been on my mind the last few days. I share it here with you today.

 

 

 

Way back in the 6th grade, the early 1970s or so, we had an exchange teacher as opposed to an exchange student. Christopher Bodenham was his name. He w...as supposed to teach us for a year. It took some getting used to, at the time, but I think we were making progress. Sadly, about a month into his teaching us here in the States he had a tragic and fatal accident. I don’t know who contacted his family back in England, but I do remember waiting out in the hallway that day wondering where he was. All of a sudden Mr. Anthony, our principal, showed up to let us in the classroom. We were all wondering what happened. I believe after we all settled in the classroom, he told us that we would be getting a substitute teacher. I don’t think he told us why that morning. Ms. Simmons just suddenly appeared somehow later that day. I believe it was at the end of that day that we were told Mr. Bodenham had passed on. I don’t think we were told the hows or the whys, just that it was. I remember we all had to sit down and write condolence letters to his family. I remember going to his memorial service and my mom telling me not to cry ... why I remember that is beyond me! I remember thinking his father’s name was David. He finally corrected us and told us his name was Denis. Yes, he was a doctor, a surgeon no less, and he became my mentor in life.

It all started with that condolence letter to him when I was in the 6th grade. He wrote back to our entire class thanking us for writing to him. I wrote back to him saying you’re welcome ... and on it went. For years we wrote to each other. I believe it lasted for a good 15 years!

Denis and his wife, Anne, came to the United States way back in 1980 or 1981. Boy, talk about one excited kid - me! I was finally going to meet the man I’d been writing to. I remember my mom set up an open house. I vaguely remember being sort of embarrassed for my classmates to be in our house, you know how kids are. I don’t think they picked on me though for my mom having an open house. I remember promising Denis and Anne that I would visit them after I graduated from high school in 1985. So, instead of a college education I went to England in 1985. I stayed there for 6 weeks. I was 17. I was sort of lost in this vast land of England, not knowing anyone except my host and hostess. I made a lousy house guest for sure. Looking back, I cherish the moments I was able to spend with Denis. He passed away in the early 1990s. I miss him to this very day. My most cherished item is a water color he painted of the church in his neighborhood. I have that and his picture hanging in my home office.

Anne, bless her ... I was never really connected to her in any way. It was Denis I was connected to. I can’t even explain that really. When I would write to them, I would say Denis and Anne, but really ... there just was no connection with her, I didn’t think. I don’t know ... maybe it was because Denis was the one who did the writing? Anyway, Anne was the one who wrote me a letter way back in the early 1990s telling me of Denis’ passing. That was a hard day.

Bless Anne, though ... after Denis’ passing we tried to remain in contact. It just was not the same. I had no clue what to write. I would tell myself to write to her like I would write to Denis, it just was not the same. Anyway, it got down to a Christmas card kind of relationship. Oh sure, we’d send an occasional note, with the promise of doing better. I was so excited to hear from her that she had email - we thought maybe that would be easier. Then, she was set up on Instant Messenger. None of it helped. I would look forward every year to her sending me my annual calendar. Yes, I knew it would be a cat calendar, but all the same it would arrive every year. It became our unspoken tradition ... and I, in turn, would send a box of ornaments for her to distribute every year ... every year without fail.

I guess it was about 4 years or so ago when no calendar arrived. I was like, hmmmm, maybe she simply forgot or maybe it would be late. No calendar. Another year went by, no calendar. It was not until just this past year I found out the reason.

Anne has Alzheimer’s. Anne has Alzheimer’s so badly that she had to be put in a home as she is a danger to herself and others. As of the time of this writing, March 10, 2015, I do not know if Anne is still here. I am making the presumption that she is as I have not been told otherwise and I do not find anything on Google, not that that means anything. I asked the person I am in contact with in England if she happened to have Anne’s address where she is at. I was informed that “she will not remember you. I’m sorry, but she won’t.” This hurts me to the very core of my being. Why? Because how does anybody really know this? How does anybody really know what an Alzheimer’s patient will remember and what he/she won’t remember? I just simply wanted to send her a card.

This is my story of Anne. I cherish these two people, Denis and Anne, deeply and I will never forget them. I cherish Anne for trying to continue to maintain a relationship that lasted for many, many years and one that I will forever miss.

Anne is one of the ladies who inspire my Facebook page. I honor her in my efforts to raise awareness, to hopefully help make the “stigma” of being a person with dementia diminish. There is no shame in having Alzheimer’s or dementia of any form, no shame.

 

You can follow me on Facebook: https://www.facebook.com/melissaacraftingforacause

 

 

Lewy Body Dementia

Read the second sentence - 1.4 million individuals - that is frightening!

What is LBD?

LBD is not a rare disease. It affects an estimated 1.4 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely underdiagnosed. Many doctors or other medical professionals still are not familiar with LBD.

LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms.

While it may take more than a year or two for enough symptoms to develop for a doctor to diagnose LBD, it is critical to pursue a formal diagnosis. Early diagnosis allows for important early treatment that may extend quality of life and independence.

LBD is a multisystem disease and typically requires a comprehensive treatment approach. This approach involves a team of physicians from different specialties who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. Many people with LBD enjoy significant improvement of their symptoms with a comprehensive approach to treatment, and some can have remarkably little change from year to year.

Some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.

WHO WAS LEWY?

In the early 1900s, while researching Parkinson's disease, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain's normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior. Lewy body dementia exists either in pure form, or in conjunction with other brain changes, including those typically seen in Alzheimer's disease and Parkinson's disease.


To learn more about Lewy Body dementia - http://www.lbda.org/category/3437/what-is-lbd.htm

Rita Hayworth

Did you know Rita Hayworth suffered with Alzheimer's that went incorrectly diagnosed for a very long time?

http://articles.latimes.com/2006/nov/20/health/he-myturn20

Today, someone suffering from forgetfulness is immediately assumed to have Alzheimer's disease. But it was only a few decades ago that famed actress Rita Hayworth's Alzheimer's was persistently misdiagnosed.

One of World War II's most popular pin-up girls, Hayworth began having trouble remembering her lines during the 1960s, while in her 40s. She drank heavily at times, and her fellow actors largely suspected alcohol as the cause. So did her doctors.

In the 1970s, as Hayworth's mental status worsened, she experienced several distressing public spectacles. The worst was in 1976, when she became agitated on a plane trip to London, and photos of the disheveled actress were broadcast worldwide.

Although the original patient diagnosed with what came to be known as Alzheimer's disease was a woman in her 40s, just like Hayworth, physicians had largely forgotten the disease between the discovery of the disease by German physician Alois Alzheimer in 1906 and the 1970s.

There were other blinders in Hayworth's case. Her colleagues and friends engaged in extensive denial, continuing to book her for appearances and take her to parties. And like many Alzheimer's patients, Hayworth, despite increasing confusion and memory loss, remarkably rose to the challenge on occasion. She somehow successfully played the role of a gun-slinging mother in the 1972 film "The Wrath of God."

The actress avoided doctors, who always lectured her about drinking. But finally, in 1979, New York psychiatrist Ronald Fieve made a diagnosis of Alzheimer's, a dementia caused by plaques and tangles in the brain. Two years later, the diagnosis was made public.

By this time, doctors had realized that memory loss in the elderly -- which was much more commonplace than in the young -- was also often due to Alzheimer's.

Hayworth, who died at age 68 in 1987, would become the first public face of Alzheimer's, helping to ensure that future patients did not go undiagnosed. Today, thanks in large part to Hayworth and Ronald Reagan, who went public with his diagnosis in 1994, federal funding for Alzheimer's research has dramatically increased from $146 million in 1990 to more than $650 million.

Unbeknownst to her, Hayworth helped to destigmatize a condition that can still embarrass victims and their families.

"It's upsetting that we all thought that she was drinking and we attributed all of her behavior to her being an alcoholic," Hayworth's nephew, Richard Cansino, recalled after her death. "I feel guilty I perceived it that way."

Barron H. Lerner, a historian and physician at Columbia University Medical Center, is the author of "When Illness Goes Public: Celebrity Patients and How We Look at Medicine" (Johns Hopkins, 2006).

Five Stages of Grief

The 5 stages of grief as per grief.com ... we all grieve in different ways and in our own time. Never let anyone tell you to "cheer up" or "it'll get better." We all know it takes time to heal our wounds and, even with the passage of time, our grief can run very deep. We grieve over different things, such as divorce, loss of a job, maybe even a friend moving away, and more importantly death (the toughest part of life whether it be a loved one or a beloved pet). Take your time, your wounds will heal and scab over. Never be afraid to cry, scream, yell, rant, rave, pace the room, take a nice long jog, whatever it takes ... don't be afraid to experience the emotions no matter what anyone tells you.

1. Denial. This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle. As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.

2. Anger. Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this? Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – – your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing. We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.

3. Bargaining. Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?” We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.

4. Depression. After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.

5. Acceptance. Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves. Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

Take your time, feel your emotions. Never let anyone tell you "it's not okay" to cry because it is ... even years later when the loss feels like it happened just yesterday.