Situation Update, Appeal, and Expose of a Killer Called Alzheimer's
May 27th 2009 19:23
Update On My Situation
Most of you are aware that, due to my mom's illness and my caregiving responsibilities, I've been unable to post much at Writer's Notes over the past few months. Some may also be aware of the latest development in my situation; but for those who aren't, I'd like to share an update: My dear, sweet, precious mother passed away Sunday, May 17th, at the age of 82, after a shockingly short, fierce battle with an unusually fast-progressing form of Alzheimer's, which devastated both mind and body before finally taking her life.
It's been a very sad time for my family and me and an extremely hard thing to watch this insidious disease wreak its devastation on a woman who was always so sharp, alert, detail-oriented, meticulous, and exacting before its onset--to watch her gradually (though rapidly) lose her ability to reason, communicate, walk, feed (or do anything else for) herself, and eventually even lose the ability to eat or drink (even through a straw) and even when fed by others.
I hope my description of the end-stages of this hellish disease isn't too graphic for my readers' sensibilities, but I believe that many (like me) were not previously aware of the true nature of Alzheimer's and just how devastating it can be. Prior to my own experience with this medical monster, I didn't know that it was a fatal disease and naively thought it always took years and years to develop and that its effects were limited to cognitive impairment, wandering and becoming lost, and other similar difficulties. I soon learned, though, that that isn't the half of it.
Dispelling the Widespread Myths About Alzheimer's
The following quote from the Alzheimer's Myths page of the Alzheimer's Association website addresses the reality of Alzheimer's--a reality of which most people are unaware:
Myth 2: Alzheimer’s disease is not fatal.
Reality: Alzheimer's disease has no survivors. It destroys brain cells and causes memory changes, erratic behaviors and loss of body functions. It slowly and painfully takes away a person's identity, ability to connect with others, think, eat, talk, walk and find his or her way home.
Reality: Alzheimer's disease has no survivors. It destroys brain cells and causes memory changes, erratic behaviors and loss of body functions. It slowly and painfully takes away a person's identity, ability to connect with others, think, eat, talk, walk and find his or her way home.
I hope this eye-opening information won't be too shocking to my readers, but I do feel it very important to dispel the myths that lull us into complacency about this devastating disease--making us ill-equipped to face it when it enters our lives. (For the other seven myths listed on the website, along with their rebuttals, visit the above link.)
Knowledge Equals Power to Prepare
The truth is that many people live many years with Alzheimer's, and in its earlier stages it rarely, if ever, wreaks the devastation that its later stages bring. Many Alzheimer's patients live reasonably happy lives for years. Yet, it's also important to be aware that this isn't always the case and to be prepared in the eventuality that we or our loved ones face a more aggressive, faster-moving variety.
There are drugs that can slow the progression of Alzheimer's somewhat if taken early enough in the disease process, though their effect is temporary, they only work for about half the people who take them, and that effect only lasts on average about 6 to 12 months. These facts are also addressed on the Alzheimer's Myths page of the Association's website (found at the link presented earlier in this post.)
This insidious disease snuck up on me, and by the time I realized what was happening, so much ground had already been lost. Then, it progressed at super speed like a horror movie video set to "fast forward," never allowing me to achieve (or regain) my equilibrium as a daughter, companion, caregiver, "nurse," or friend. In short, it was a nightmare, and I would hate to see this same nightmare come upon you unawares.
Please educate yourself about Alzheimer's, because you simply never know when it might strike someone you know and love--and when it does, there's absolutely no way of knowing for certain how much (or how little) time you have left.
Thanks so much for reading!
Jeanne
P.S. I'd planned to provide a link to a writing-related website as part of this post (since this is, after all, a writing blog); but, due to the serious and emotional nature of the above message, I've decided to hold off and provide that link in a separate post. When I first began penning the above post, I wasn't absolutely certain how much I would reveal about my mom's death or the precise manner in which that revelation would evolve. But, since I felt it so important to share and prepare my readers for the possibility of meeting Alzheimer's head on in the future, it seemed inappropriate and anticlimactic to follow my appeal with something so mundane as a link to a freelancing website. I hope that no one minds and that all will be patient until I can get the next post up. Thanks so much for your understanding.
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Comment by Karen Swim
Comment by Lillie Ammann
Thank you for the update and for sharing the information about Alzheimer's. I have been praying for you and your family, thinking your mother probably had passed on because I knew it was so close to the end.
I watched my father slowly deteriorate with Alzheimer's for seven years before he finally died, though he had been lying in a bed with no awareness and no bodily functions for a very long time before the end.
There are unique challenges with each form for Alzheimer's. With the fast-progressing type like your mother's, the family is completely off balance and, as you say, can't regain your equilibrium. With the slow-progressing type like my father's, the family becomes emotionally and physically exhausted from years of caregiving. Financial resources are also exhausted. My father, who was always a gentle and kind man, exhibited aggressive behavior in some stages of the disease. A trusting and generous person, he became paranoid before he was completely incognizant. In the earlier stages, he knew something was wrong but didn't understand what. It was heart-breaking to see him cry and tell us not to let anyone see him "like this" though he didn't know what "this" was.
Either form of the disease is devastating on the person with the illness and as much or more on the family and loved ones.
Everyone in our family was a caregiver to my father at various times and to varying degrees. My youngest sister gave up her job and moved home to help. After Daddy died, she returned to college for a degree in social work and works in a nursing home with a special sensitivity for Alzheimer's patients.
I will continue to pray for you and your family.
Comment by Brad Shorr
Comment by Jeanne Dininni
Writer's Notes
Thanks so much for your compassionate and caring comment. I truly appreciate your kindness and sensitivity, as well as your prayers.
You are so right that not all dementia is Alzheimer's. Dementia can be caused by many things, including stroke, medication, injury, and other types of illness. Yet, Alzheimer's is one of the most serious and devastating forms of dementia and one of the few that are actually fatal.
As you say, education is so important, because, just as we wouldn't want to overlook the possibility of Alzheimer's, we also wouldn't want to assume an illness to be Alzheimer's if it isn't. That would cause us so much unnecessary fear, anxiety, and emotional turmoil.
The Alzheimer's Assn. website has so much helpful information, and for those who believe their loved one might have this deadly disease, visiting the website of and/or calling their local Alzheimer's Assn. will bring all the important resources right to their doors--which can prove such a support as they navigate the maze that is Alzheimer's.
My own local office not only provided a really informative and practical book called, "What Now?" (which I'll try to link to in a later post since the main Alzheimer's Assn. website doesn't appear to offer it), but they also provided a respite caregiving grant to allow me to pay a caregiver to come in and relieve me so I could have a break and/or take care of other necessities. They really are a godsend at a time like that.
Thanks again for your tenderly offered condolences. They are truly a treasure--as are you.
Many, many blessings to you,
Jeanne
Comment by Jeanne Dininni
Writer's Notes
Thanks so much for your ongoing prayers, as well as your support and concern for my mom's condition--not to mention your intuition in realizing what had likely transpired.
As someone who has been through this, I know how deeply you can relate to the ordeal my family and I have so recently experienced. I realize that our situations were very different--by virtue of the wide variation in the amount of time that transpired between the onset of our parents' illnesses and their final journeys home to heaven--yet in many ways our experiences were the same.
There's no easy way for a patient and his or her family to deal with Alzheimer's and no easy way for the disease to progress. Whether fast or slow, it's equally devastating--though each type features its own unique form of torment.
I can see how physically and emotionally exhausting it would be to have the debilitating stages of the disease drag on for years; yet, in our situation, I really felt robbed of the ability to stabilize and gain the upper hand over Mom's symptoms in any one stage of her illness. This, in itself was highly frustrating and emotionally exhausting. Every time I learned to master one caregiving skill ... every time I learned one new and appropriate way of making Mom more comfortable ... every time I gained one new insight into her condition or what I could do to mitigate it, that condition changed for the worse within days and the steepness of the learning curve simply never levelled off. Somehow, I hadn't expected it to be that way.
In its own way, it was physically and emotionally exhausting to be fighting this unrelenting uphill battle--at a full run, as it were--facing crisis after crisis, with no rest stops along the way where one could pause and catch one's breath or take stock and plan a strategy for meeting Mom's ever-changing needs and still finishing the race standing up.
It really felt like a no-win situation--though I'm so thankful for my family, my church, and all the others who were there for me, because that made all the difference in the world and helped get me through, despite the physical and emotional demands of being Mom's primary (and for a time, only) caregiver. I'd do it again in a heartbeat, though, because Mom was more than worth it. Yet, it was a truly heartbreaking labor of love.
Thanks so much for sharing your own experiences with us. They somehow help make it easier to process all that we've been through by enabling us to see the bigger picture and thereby put our own experiences into proper perspective. I'm very grateful for that.
Love and blessings,
Jeanne
Comment by Jeanne Dininni
Writer's Notes
Thank you hardly seems sufficient for your--and everyone's--continued prayers and expressions of support. I'm so grateful for your compassion and understanding. Since you've been through this devastating illness with your own grandmother, I know that you can relate to what my family and I have been through. Thanks for letting me know that. It's strangely comforting to know that someone else truly understands the trial you're facing (or have faced). But, that's a part of what moral and spiritual support are all about, isn't it?
Thanks again for your understanding throughout this entire ordeal--including your patience with me when I've been unable to prepare my Whoa Factor posts until late in the month. I truly do appreciate your flexibility and lack of stress over the lateness of the posts, which have made a very difficult experience that much easier for me. Thanks, too, for running your own posts in place of mine, when mine were later than we would have liked. I truly couldn't ask for a better boss for whom to do subcontract work. Thanks for being that kind of boss.
May you be blessed in everything you do,
Jeanne
Comment by Lillie Ammann
I certainly recognize how emotionally and physically exhausting it would be to have the disease progress so fast. At one point, Daddy's disease worsened dramatically. He had a heart attack and instantly went from moderate impairment to severe cognitive impairment, and that was definitely a difficult time. The rest of the time, though the decline was gradual compared to the speed of your mother's decline.
As you say, each form of the disease has its own unique torment yet both are devastating.
Comment by Jeanne Dininni
Writer's Notes
I, too, can see the extreme difficulty of your family's plight battling this relentless disease over the long haul. That had to be an exceptionally tiring and emotionally draining time in your lives.
Thankfully, various family members were able to share the caregiving responsibilities and thereby take the entire burden off one person. Otherwise, it would have been overwhelming for the family member who would have had to handle your dad's ongoing care (more than likely your mother). I'm sure it was a real blessing to her to have all of you rallying round, just as it was to me when my sisters were able to visit and help out near the end and when Hospice provided the help that relieved me of part of the physical burden of Mom's care (though Hospice was only involved for the last two weeks of her life).
Alzheimer's definitely changes the people whose loved one is struck down by it. One can't go through an experience like that and remain unmoved or unchanged. I'm sure your sister is using the compassion gained from caring for your dad to touch many lives in the nursing home where she works, and I can attest to the kindness, caring, and compassion that you yourself have shared with me at various times, which was obviously developed in part through that unhappy experience.
All we can do is take life as it comes, trust God, love others, and do our best, knowing that every trial we face makes us stronger and better people and helps us grow in our love for others.
Comment by Lillie Ammann
I lived about 100 miles away, ran a business with 18 employees and 300 customers, and had severe limitations from my stroke. I could sit with Daddy and provide meals and small things, but I couldn't lift or bathe him. So even when I was staying with him someone else had to come in and handle the heavy tasks. Finally he reached the point that he required more care than even my healthy sisters could provide, and Mama had to put him in a nursing home. We all hated that, but we wanted him to have the care he needed, and none of us could provide it ... as much as we wished we could.
You are a very strong person to be able for your mother alone. She was blessed that you could do so. Even if she wasn't consciously aware of what was happening and didn't recognize you, I'm convinced at some level she knew. Too many things happened during my father's disease for me to doubt that at some level at least at some times, he felt our love even if he didn't know our names or relationships.
Comment by Jeanne Dininni
Writer's Notes
I totally agree with you that our parents are aware--on an emotional, if not a cognitive level--of what we're doing for them when we work our labor of love on their behalf. Even the Alzheimer's Association says that, once we are unable to connect with our loved one on a cognitive level, we can still relate on an emotional level. And it's really difficult to say just what our loved ones can perceive, even cognitively, once they can no longer express it to us because they've lost the ability to communicate. It's possible that they are completely aware of what's going on but simply unable to communicate that fact to us. After all, we know that people have come back from comas to say that they heard everything said and were aware of everything going on around them, though they were unable to let anyone know it.
I will say that it has to be far more physically demanding to care for a man than it was to care for my 4'11" mom, who had lost so much weight that she was extremely light. Yet, I'm quite thin myself, and it's surprising how heavy even a light person can be to lift or move when she can do nothing at all to help you. This is why I totally understand your having to place your dad in a nursing home at a certain point because the physical strain simply became too much. I know how all of you must have felt then, but you can only do what's physically possible, and you'd already done all that you could for your dad, out of sheer love and dedication to him.
I'm sure he's looking down on all of you right now with incredible love and appreciation for all the sacrifices you made in caring for him as long as you did. One day you'll know how much he understood at the time, and I have a strong feeling it will be far more than any of us thinks, because people can read the language of love--it's called self-sacrifice.
Comment by dcr
I'm sorry to hear about your mother.
I sympathize with your loss. My grandfather passed away a few years back. He had Parkinson’s and Alzheimer’s. He lived at home for a while, but eventually had to move into a nursing home. My grandmother went there every day to be with him. I think, though, she spent a fair amount of time socializing with other wives and husbands doing the same, so I think that served as somewhat of a support group for her.
I think everyone needs to be aware of the effect such a loss can have on other members of the family as well. Just a couple weeks after my grandfather passed away, my grandmother had a stroke. So, she went from taking care of my grandfather every day to needing care herself.
Alzheimer's, and similar conditions, affect those that don't have it as well. The stress and grief that family members can go through can negatively impact their health too. I think that, after my grandfather's passing, and the loss of the impromptu support group at the nursing home, may have played a role in my grandmother's health.
I think you need to maintain whatever network of support you may built up even after someone's passing.
Sorry to take up such a big block of space, but I felt it worth mentioning and hope it might help anyone else that has gone through this.
Dan
Comment by Jeanne Dininni
Writer's Notes
I'm more than happy to have you "take up such a big block of space" in my comments section. In fact, I'm honored that you would take the time to compose such a thoughtful, helpful, empathetic, and in-depth comment sharing your own family's experience with Alzheimer's (not to mention that I've always been partial to longer comments). Such personal recollections from one's own experience are invaluable to those currently dealing with the effects of such a devastating illness as Alzheimer's -- and, I'm convinced, will one day prove every bit as helpful to those who read your words today and later face such an illness with their own loved ones.
Your past experience makes you uniquely qualified to address this issue, giving special credibility to your advice -- though, of course, heartfelt expressions of sympathy and compassion are always therapeutic and always welcome, even when they come from someone who hasn't experienced the trial in question, because they demonstrate the caring and love that the individual feels and desires to share with the suffering or grieving person.
For a short time, I felt my mom might have also been suffering from Parkinson's, but as I became more knowledgeable about the symptoms of Alzheimer's I realized that some of the symptoms of the two illnesses can seem similar. Mom's symptoms didn't progress in quite the same manner as I believe they would have had Parkinson's actually been involved -- though the manner in which her symptoms did progress was frightening and heartbreaking enough.
I'm sure your grandmother received a great deal of much-needed support from the other Alzheimer's patients' family members that she met at the hospital. And while her support group may have consisted of an informal group of people sort of thrown together through their coincidental gathering at the hospital where their loved ones were being treated, I'm sure those gatherings and the relationships forged (if even for just a little while) during that period proved serendipitous to your grandmother and her mental and emotional well-being.
It's unfortunate that she suffered a stroke so soon after your grandfather's death. I'm so sorry to hear that. Caring for, helplessly watching the deterioration of, and eventually losing a loved one to Alzheimer's is such a devastating experience that one can never fully describe the horrors of it. (I've often said that it felt as if I were in the Twilight Zone -- and really that doesn't even begin to describe it, as true as the statement was.) So, I can understand the stress your grandmother must have experienced; and if she didn't have a very close-knit, ongoing support system after your granddad's death, that -- along with the unrelenting physical strain she'd experienced -- would likely be enough to seriously compromise her health.
You are so right that ongoing moral support is so important. I'm blessed to have the continued support of not only my family, but also the wonderful women in my church women's group, who have stood by me throughout this entire ordeal and continue to do so. This is a blessing beyond words.
Thanks so much, Dan, for sharing the vital words of wisdom you've penned here -- words that can make such an enormous difference to someone facing one of the fiercest battles a human being can ever be called upon to fight -- the battle against Alzheimer's. I truly hope that many will read your words and that your wise advice will help someone make the critical decision to seek the support they so badly need both during and after their loved one's battle has ended.
May you be blessed,
Jeanne
Comment by Wilson Pon
Health 2 Know
Adventure Toes
boxing sound
Business Rope
Fun Places 2 Travel
Here's my deepest condolence to your mother, Jeanne. I'm sure she's watching you over at a better place!
Be strong, my friend, as you're not alone in this world. Remember that you're always have us supporting you, when you need it the most!
Comment by Jeanne Dininni
Writer's Notes
And how thoughtful of you to even include flowers! That simple yet uplifting gesture was so unexpected, and that made your message even more special.
I can't tell you how wonderful it is to have the support of all my online friends. It's such a blessing to receive condolences and words of encouragement from the other side of the world, as well as the other side of the country. It almost feels as if we live right next door.
Thanks again for being such a fabulous online friend!
Love,
Jeanne
Comment by Howard
Real Crash
Of course we all have to remember that we are all mortal and even with the best health care we, and our loved ones all eventually succumb to the end of our lives.-- Howard
Comment by Jeanne Dininni
Writer's Notes
You're so right that, as important as good health care is, it can only do so much. In Mom's case, Alzheimer's is a fatal disease with no cure; so, despite the best care, she was destined to lose in the end.
Appreciate the visit.
Jeanne
Comment by Anonymous
I haven't been reading for awhile bc I didn't realize you were writing, I was thinking you weren't doing Writer's Notes as much, not sure why. But now I have a Google Reader, so I'll add you!
Anyway, I have a family member I believe has dementia. yet he won't admit it. How do you help someone with early intervention, pills, if they won't even admit anything is wrong. He is also avoiding all other types of help, in all forms...
Anyway, thanks for visiting my blog. I'm sorry to hear about your computer. I was going to ask you if you could just chuck it, LOL, and get another computer. But that probably wouldn't work, bc you wouldn't have your files -- bc weren't they all corrupted also, even your pics? I'm trying to remember now. Would there be a workaround somehow if you got a new computer? I love working to learn new things, but that sounds way too, uhm -- well, I think I would just get frustrated is all, bc I'd be angry at the one who gave me the virus. It just seems unfair is all. Don't these people have something better to do than destroying people's computers and very lives. Just makes me mad!
Okay, off of my box, LOL,
krissy knox
follow me on twitter:
http://twitter.com/iamkrissy
Comment by Jeanne Dininni
Writer's Notes
It was a really tough time with my mom--and it's still so hard to believe it could have happened to her.
So sorry to hear about your relative's developing dementia. It's tough when the person doesn't recognize the problem and won't accept help; yet, that could be part of the illness. Though there are many different types of dementia caused by many different things, Alzheimer's, at least, causes real, physical changes in the brain. These changes prevent people who have it from really understanding what's happening to them--though they are often aware that something is wrong and simply can't figure out what it is. Hope you'll be able to get help for this family member in some form soon!
Unfortunately, I really haven't been updating my blog all that much recently. Between Mom's illness and death in mid-May and my recent PC malware infection, I've been pretty distracted--and incredibly busy--and just haven't found the time or energy to update much.
Little by little, I'm conquering the malware problem. The active infection is gone, and I'm now dealing with its negative aftereffects. It wouldn't be necessary to get rid of the computer--even if I couldn't solve the lingering problems. I'd be able to get rid of them by uninstalling and re-installing Windows, but I definitely don't want to do that. (Couldn't afford a new computer right now, anyway.)
Some of my files are corrupted, but none of this has been affecting my computer's operation. Gradually, I've been figuring out and correcting various problems, and things are getting better and better. Hopefully, I'll soon be able to figure out how to access my Windows Security Center again! I'm determined--or should I say, "stubborn"?--enough not to give up until I've figured it out.
Thanks so much for your most welcome comments!
<3
Jeanne