Am I next?

imageAm I next?
Will I also be overcome by this torrent of rushing water that starts quietly in the placid stream hundreds of feet above the falls, discreetly making forward progress and trickling over the waters edge, then quickly gaining downward momentum, until finally, at breakneck speed, it crashes frantically into everything in its path.
Having two maternal generations of Dementia at my back, the possibility of myself, and my siblings succumbing to this disease is certainly something to consider. But what are the risk factors and what can we do to prevent this from happening?
The diagnosis of Dementia in a loved one creates an anxiety that is multifaceted, and when you receive this dreaded news you come face to face with a future full of apprehension.
Initially, there is the realization that you will lose who that person represents to you in this life, (mother, father, husband, wife, etc.), while they are still living. Then slowly the angst begins to seep in all of the lifestyle changes that will surround that loss.
Can she live at home? Who will be her caregiver? And when she can no longer live at home, where will she go? Can we afford assisted living, memory care, or a nursing home? Is there enough money to care for her? What will insurance cover? How long will she live, and will she outlive her money? How will she live with this disease, and how will she die? How will we manage this disease? Can I handle this?
I was still living at home when my grandmother, (Ma), was diagnosed with Alzheimer’s Dementia, so I was no stranger to this disease when my mom was diagnosed.
Mom was so busy handling the day to day details of Ma’s dementia that she rarely had time to converse about it, other than to make it well known that she, herself, would never, ever go into a Nursing Home. I know her journey with Ma’s dementia, which spanned the entire decade of 1980, terrified her, but she never spoke of falling victim to this disease herself. Perhaps speaking of it made it a real possibility that she did not want to consider. My mom redefined strong willed, and I can just imagine her thinking she could elude this disease just by willing it away-her thoughts being something like, “I simply won’t have this”!
Unfortunately, she could run, but she could not hide. Genetics probably being high blood pressure and high cholesterol, or small, silent strokes in midlife, created the perfect storm which collectively resulted in her Dementia. Mom, unlike her mother, was ahead of her generation in many lifestyle choices that today are thought to be advantageous in helping to ward off Alzheimers. She didn’t smoke. She ate very healthy. She maintained a good weight. She walked daily. She was a socail butterfly. She worked well into her 60’s. I don’t recall any serious head trauma. Solely from a lifestyle perspective mom should have sidestepped Alzheimers.
But anything that affects the condition of our heart, and all of its vessels, also affects our brain. So mom’s blood pressure in midlife which always ran slightly north of normal and her marginally elevated cholesterol may have caused small blood clots that from time to time travelled to her brain and interrupted blood flow, resulting in permanent damage to that area, and eventually leading to cognitive impairment. A couple of these small strokes may be inconsequential, and they go unnoticed as they do not directly affect vital functions such as vision or speech. But in mom’s case, an MRI revealed significant collective damage resulting from these tiny, silent strokes occurring over two to three decades. Mom didn’t know what was happening in her brain over time, and by the time she started displaying symptoms the damage was already done. I don’t recall any books on Alzheimers laying around the house after Ma’s diagnosis, and mom didn’t have a computer, or a tablet, or even a cell phone with WiFi back then, so her information was limited to what she gleaned from health care professionals. And that information was still in it’s infancy.
But today we have a wealth of information at our fingertips, websites such as the Alzheimers Association, (www.alz.org). Web MD, UsAgainstAlzheimers, (www.usagainstalzheimers.org), Alzheimers Foundation of America, (alzfdn.org), and many more that have excellent resources available for information about Dementia, caregiving, the latest research findings, and advice for being proactive.
So every time I forget a name, or I search for the right word, or misplace something, I usually make a bad joke about it and blame it on Alzheimers. And the experts say that as long as I eventually remember that name, or the right word, and recall where I put that misplaced item, I should be OK. Someone once told me the difference lies in not forgetting where you left your keys, but forgetting the purpose of your keys.
So in order not to be next, I try to be proactive, not only in my lifestyle choices, but also in my thoughts. By not allowing myself to be anxious about the things I cannot control, I try to focus instead on those thing I can control, like what I put in my mouth, and how much I exercise, or controlling my weight, blood pressure and cholesterol.
Like an hour glass, our sand will some day run out, and usually not by our choice of method. I have had numerous conversations with health care providers over the years regarding which is worse, cognitive impairment or physical impairment, including chronic, terminal diseases such as cancer. Most believed that Dementia is harder on the family, while physical impairment, and chronic diseases are equally difficult on both the patient and the family. Mild dementia was tough on mom as we had to make choices to keep her safe which resulted in her loosing her independence. But the more she forgot as the disease progressed, the more at ease she became. She also had breakthroughs, or glimpses of cognizance in moderate to late stage Dementia, and these occasions usually caused her anxiety as she realized, if only for a moment, who and where she was, or what she had lost, but then just as quickly, she slipped back into the woozy world of Dementia.
So what increases our risks? According to the Alzheimers Association risk factors include:
Age, the most significant, increasing as we get older. The risk of developing Alzheimer’s doubles every five years after 65.
Gender, women being slightly more likely to develop Alzheimers than men.
Genetics
Medical History, any conditions that affect the heart and its vessels also increase your chances of developing Dementia. These conditions include diabetes, mid-life high blood pressure and high cholesterol, obesity, heart attack, arrhythmias and stroke. Also a history of depression, and severe or repeated head injuries
Environmental and lifestyle factors, which include an unhealthy diet consisting of too much unsaturated fat, smoking, lack of exercise, drinking above the recommended level of alcohol, lack of social and mental activity.
We are all going to age, and we can’t change our gender, or genetics. But we can modify our environmental and lifestyle choices.
And then there is always that beautiful thing called hope! Hope that someday soon a breakthrough in the field of research will bring about a cure.
My son is in his second year of Medical School, and one of his Professor’s of Pharmacology, Dr David Morgan, a leading Alzheimer’s researcher at USF Morsani College of Medicine’s Byrd Alzheimer’s Institute, recently told his students that a pharmacological cure was in the very near future. This possible cure, already in clinical trials, is in the form of a pharmacologic agent, a monoclonal antibody that breaks up the amyloid plaque in the brain-the hallmark of Alzheimer’s.
Imagine!
That is hope!
And my hope is that in the very near future no one will have to ask the question, “am I next?”

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7 Responses to Am I next?

  1. Karen says:

    Thanks for sharing this beautiful message. Your writing is eloquent, even among the difficult details of a significantly changed lifestyle. I hope with you!!!

    • mare@undiminishedbydementia.com says:

      Thanks Karen, for the kind words, and for following my blog! Peace and love to you and the family!

  2. Brady says:

    Great article. Frightening the way the disease progresses so quickly, but reassuring to know there are more resources now and medical breakthroughs on the way!

    Awesome article, thanks for the post.

  3. Denise Vaughn says:

    Beautiful Mare, it is awesome news to hear there may be a cure for AD in our lifetime. I can only hope that it will include Lewy Body Dementia, as well as all other forms.

    I am also at a stand off with myself, wondering if I will be next. How will my husband, and children handle it. Will I need to be in a dementia care facility, which is not a pretty sight. Even the good ones are not good enough. While I know it was best for my dad’s safety, it was also for my mom’s safely as she was his 24/7 caregiver for four years. Sure, we all helped out. A half a day here, half day there, with some overnight stays, but it was her daily care of him that took a great toll on her health also. I also observed that the dementia patient ( Dad) most always shows anger and frustration, as well as physical anger toward their caretaker.

    With Lewy Body disease, the patient has it long before diagnosis as it is a long slow process in the beginning. Looking back I can honestly say that I think dad had it for at least ten years before diagnosis. Then along came the Parkinson’s to go with it. When the Lewies took strong hold he had dilusional episodes…some were good, and some were scary. In the end stages of his disease he would relive scary and emotional times of his past. I felt so helpless as nothing I would do or say could comfort him.

    And then the final stages, most of which I missed because of my own health battles. I don’t know much of what was happening because my family did not tell me. I am sure for my own benefit, but at the same time when I finally did get back to see him I found my brother in the parking lot in a total breakdown. My daddy was gone. Not physically, but I would never have another conversation with him again. I would never see his eyes open again, I would never receive another kiss or hug from him again. My hope is that he felt my hugs and kisses, and heard my conversation with him in his final days.

    The last visit, the last breath. I didn’t know whether to cry or rejoice, and so I did both. His suffering is done, mine is not. I know he is with our Heavenly Father, but what I wouldn’t do for one more conversation,one more hug and kiss, just one more.

    Thanks for your blog Mare, it is helping me process this loss. This is the first time I have cried for my dad, perhaps this will bring me peace.

    I too have hope. Hope for healing a broken heart, hope for a healthy future, hope that soon no family will have to suffer through or with the ravages of this disease. Hope that we will overcome our fears of developing this disease together through a lifetime of friendship.

    Keep up the beautiful and eloquent writing with your blog!

    Peace and love, Denise

    • mare@undiminishedbydementia.com says:

      Thanks Denise for your raw thoughts and emotions. My thoughts and prayers are with you during this period of mourning. Your recent loss makes it difficult for you to process everything you and your family have been through. Time heals, as well as brings a different perspective. Be patient with yourself, and know, (because I know) that your dear dad loved you to death, and is so proud of the way you cared for not only him, but also the way you continue to care for your mom!
      I have read that Levy bodies can be especially difficult with the fluctuations in alertness as well as the visual hallucinations and delusions.
      Did you know that Lewy bodies are also found in the brains of Alzheimer’s patients, which suggests that patients can have both of these diseases at the same time. There is so much more to be discovered about all of these forms of Dementias. The more they have in common, the better chance that a cure, even if it begins with Alzheimer’s Dementia, can also have an effect on the other types as well.
      The good news is, that outside of the rare familial form, Dementia with Lewy Bodies does not seem to have a genetic component!
      Hopeful!
      Love and peace back to you!

  4. Carolyn Cook says:

    Great blog, Mare! I’m glad your friend connected us!

    • mare@undiminishedbydementia.com says:

      Thanks Carolyn!
      The dear picture of your mom kneading dough really warmed my heart today!
      Looking forward to reading more about your journey!

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