No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:
- In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
- That equates to 18.2 billion hours of care valued at $230 billion;
- 1 in 3 adults dies with Alzheimer’s or other dementia;
- It kills more than breast cancer and prostate cancer combined;
- Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
- Every 66 seconds, a person develops the disease.
My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.
- Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
- Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
- Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
- Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
- Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.
These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.
The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.
I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.
I’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.
Walk in Their Shoes… Just for a Minute. The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.
Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us. We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia. If we could, we would shriek at what we see and experience.
So we get frustrated – understandably so. We raise our voices in anger – and feel guilty immediately thereafter. We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!
Do not ask me to remember is a loaded statement and one which should give us pause. We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born? Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question? Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?
Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.” And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?
Because they don’t remember.
Alzheimers Research Funding Lags Other Diseases- Dementia – AARP. The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America. The cover contains photos of fifteen celebrities who died from the disease. Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.
What a shame.
It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet. Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.” Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum. Read the rest of this entry »
If you’re like me, you’re wondering how another year has slipped by so quickly. I’m sure there were a few of the 52 weeks that seemed to slog by, but all in all we can now look back and marvel at what we accomplished, or what others accomplished in our stead, during the past 365 days.
An accomplishment with which I’m happy is having authored this blog for the past three and a half years. I’ve provided this blog for you, but I’ve also provided it for me because I truly enjoy having the opportunity to share my experiences and my viewpoints; I hope in the process that I have encouraged, helped, and entertained you. From the start of Baby Boomers and More in 2011 to the end of 2014, I posted 520 articles. I’d be a very happy blogger if the quality of those articles surpassed the quantity because if I’m just talking into thin air without benefit to others, its hardly worth the space my blog occupies.
Here are links to the five most visited articles in the year 2014 based on WordPress statistics:
Read the rest of this entry »
Did you ever get so busy that you received an award and didn’t go pick it up, and then you forgot that it was waiting for you? That’s me. Lori, one of my most favorite bloggers, has been writing her blog Let’s Talk About Family since December 2011. This fabulous person nominated me for the Best Moment Award in May of 2013. All I can say is that not “picking up” my award qualifies me for the Worst Moment Award, but I’ll try to make up for it with this post.
Lori’s blog family history starts with her mother’s failing health and death, and continues with her father’s life as a widower who eventually moves into an assisted living facility (ALF). Her blog is one that I never miss. You know how you can manage the notifications you receive so that you get a notification e-mail immediately, daily, or once weekly? Her blog is one of those that I receive immediate notifications – I can’t wait any longer! is the way I treat her blog. Thank you so much for opening up your life to us in the blogging world.
Rules for the Best Moment Award:
Winners post information about the nomination, thanking the person who nominated them, with their acceptance speech that can be written down or video recorded.
Winners have the privilege of awarding the next awardees (see below) The re-post should include a NEW list of people, blogs worthy of the award, and winners notify them the great news. Winners should also post the award badge on their own website.
What makes a good acceptance speech?
Thank the people who helped you along the way, be humorous if you can to keep the reader entertained and smiling. Provide inspiration that helps your story to touch the lives of others.
And here’s mine: I’m thrilled to be acknowledged as having something good to say from time to time. I don’t think I’m an excellent writer, but I do have lots to say and I’m quite willing to write up a storm. I’m the youngest of three siblings and the only one of us who has been involved in the lives of senior citizens – and everything that involvement implies – for close to two decades. I’ve always loved people older than me; I guess it gives me comfort knowing that I’m younger than someone else. My official responsibilities over the years involved: working in the senior housing industry both in the corporate environment and in assisted living/memory care facilities, being an Alzheimer’s Association caregiver support group facilitator, and a Certified Long-Term Care (LTC) Ombudsman for the State of Washington (an advocate for vulnerable adults living in LTC facilities.) I’m retired from active work but I am actively still involved in being an advocate for the vulnerable by writing my first novel – a project I hope to complete by end of this year. My novel focuses on the lives of family members who care for a loved one with Alzheimer’s or other dementia.
My nominees for the Best Moment Award are:
Kay Bransford, for Dealing with Dementia. The reason I enjoy Kay’s blog is best described by her blog’s subtitle: A family caregiver’s journey to deliver loving care with grace and humor. We all know there is absolutely nothing humorous about Alzheimer’s or other dementia, but humor can be found in the human interactions between caregiver and family member. If you look for them, you will find them. Kay, I’ll be posting my acceptance of a different award you recently nominated me for very soon. THANK YOU!
Dementia Poetry is an in your face journal of a daughter-in-law’s disease journey with her mother-in-law, in the form of extremely well-written poems. The subtitle for her blog is: The Politically Incorrect Alzheimer’s Poetry Blog.
Theresa Hupp’s blog, Story and History, is a moving journal of a family’s life covering past, present, and future. But that’s not all: Theresa is a fabulous, published author. I’d say I’m jealous, but friends, and that’s what I consider Theresa, don’t turn green with envy – at least they shouldn’t. Theresa, you nominated me for the Versatile Blogger Award in February of 2014, but I already received that award a couple years ago so I’m not going to claim it again, but I thank you profusely for nominating me.
Reflections on Dementia, Caregiving and Life in General is a must-read blog all the way from Singapore. This blogger takes care of her mother who has Alzheimer’s and vascular dementia. Her insights and her view of her world will engage you from the very first posting you read.
Attached is a very worthwhile read by blogger, Kathie Ritchie. The article includes her suggestions as well as those of caregiver adviser, Marie Marley. (Note: the links provided for Marie Marley appear to be broken, but Kathie includes Ms. Marley’s input within the body of her own blog article, making the content easily readable.)
Additional articles that will provide information and suggestions to non-caregivers on how they can help their neighbor, co-worker, besieged family member:
- Caregiving: Grief, Guilt, Exhaustion, and Discrimination;
- Solo Caregiving;
- Caregiving: The Ultimate Team Sport
The above will give you more than enough material to provide readers with helpful suggestions. If you don’t take the time to read the attached articles – and I sincerely hope you do – I’ll leave you with one suggestion that I hope you do follow:
If a caregiver doesn’t ask for help while on his or her caregiving journey, don’t assume they aren’t in need of your assistance. Offer specific assistance to them; don’t force them to come up with a suggestion on how you can help.
Examples: “I have some individual frozen leftover meals I’d like to bring over for your household, what’s a good time for me to drop them off?” or “I’m headed to the grocery store, what can I pick up for you?” or “It may sound crazy, but I enjoy working in the yard. I’ve completed my Spring yard cleanup, I’d like to come over and help you with yours.”
Like Nike says, “Just do it!”
Alzheimer’s Foundation of America Teens (AFA Teens) brings hope that is sorely lacking from the Alzheimer’s medical community. The younger generation is doing something that many of us older adults are not: bringing more awareness to a disease that most of us have been exposed to, either peripherally or specifically. “AFA Teens, founded by a teenager, seeks to mobilize teenagers nationwide to raise awareness of Alzheimer’s disease, and to engage, educate, and support teens and their families.”
As adults, we are affected because the person with the disease is our spouse, partner, sibling, or older relative. But what about the cousins, nephews and nieces, children, and grandchildren out there? Children and teenagers are also exposed to this disease. The challenges faced by teens who are actively involved with these relatives – living close enough to have frequent interaction with them – are challenges that adults have a hard time grasping.
“How come Pappy doesn’t recognize me any more?” “Why does mom always forget the things that are important to me – like my birthday!” That’s right; some teenagers have mothers or fathers with early-onset disease. What should be one of the most exciting times in their young lives is instead spent as a co-caregiver with their other parent. (I addressed this unfortunate family dynamic in my article, Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia.)
I strongly encourage you to visit the AFA Teens website. I know you will be encouraged by the efforts being made by these young advocates.
A May 15, 2014 New York Times article, Alzheimer’s, a Neglected Epidemic by Ginia Bellafante, provides a keen look at a fatal disease that many still assume is one that only other people get. Maybe my coworker a few cubicles away from me or the neighbors down the street will have to deal with some sort of dementia, but not our household – right? You wish. Alzheimer’s is a world-wide epidemic and it’s knocking on your front door.
In 2010, Alzheimer’s was the underlying cause in 500,000 deaths in the United States.
Let’s look at another epidemic with horrific fatality totals. Remember the AIDS crisis? As of the year 2010, in thirty years’ time, AIDS was responsible for 636,000 deaths in the U.S. And yet Alzheimer’s – a very unpopular disease that is erroneously characterized as just an old person’s disease – racked up almost that many deaths in just one year.
Alzheimer’s isn’t just for geezers any more.
That’s the title of one of the chapters in my manuscript – a work of fiction that centers on the lives – patients and their family caregivers – affected by Alzheimer’s or other dementia. A couple of my characters are in their 80s but there are three characters ranging in age from early 40s to mid 60s whose disease journey began when they were no longer considered young – but definitely not considered old.
What will it take to push people out of denial and into activism?
In the New York Times article linked above, AIDS activist, Peter Staley, is quoted as saying, “The hidden blessing of H.I.V was that it hit a community, my community, a community of mostly gay men. We had a base of organizing that came out of Stonewall.” [1969 demonstrations by members of the gay community in response to a police raid at Stonewall Inn, in Greenwich Village.] And then he goes on to say, “Alzheimer’s hits old people. There is no real organized community beyond AARP.”
I’m not happy with Mr. Staley’s characterization of Alzheimer’s as an old person’s disease because it perpetuates a myth that is simply not entirely true. But I fully back his advice to all of us:
How does a large, affected community get the country to care? It means playing a strong inside game: These family members need to organize effectively; they need to find their allies in Congress; they need to show up with sick people in front of key members of health communities.
You? Are you doing your part to shine a spotlight on the hideousness of this fatal disease? At the very least, have you made a monetary donation to the Alzheimer’s Association in your country – a donation from which you will personally benefit? United Kingdom; Alzheimer’s Prevention; Alzheimer’s Society of Canada; Fight Dementia – Australia – to list a few.
If you have been bitten by a dog you’re in good company. I read the following statistics in the May 16, 2014 issue of the Seattle Times newspaper:
- In 2013, 4.5 million Americans were bitten by dogs in the United States;
- The above total includes more than 2 million children and almost 5,600 U.S Postal Service employees.
Gee, statistics for 2014 will include me in the number of Americans bitten in the United States. I seem to have greater potential for becoming part of those statistics than making a name for myself as a published author.
The title for this article is my shameless attempt to keep my novel-writing in the forefront of everyone’s minds.
I’m pretty excited however – not by the dog bite episode of May 7th – but by the status of my manuscript. I’ve almost finished reading it through – for the zillion’th time – and thus far I’m pleased with the cohesiveness of the storyline. I’m still making edits in grammar and punctuation – semi-colons and hyphens/dashes are really stymieing me – but I’m hoping if I do my very best, a copy editor will do the rest. I am 100% certain that an agent will want to represent a book that throws a personal and touching spotlight on those who are living with Alzheimer’s and dementia. There’s not an agent or publisher out there who hasn’t been affected by this disease – either peripherally or specifically.
Please stay tuned as I will be providing updates in an effort to keep me on my toes, keep me honest, and get this d@*#mn book published.
Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable. Sometimes the unpredictability brings heartache and extreme difficulty.
sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty. Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.
Click on the link above to read about one man’s journey from spousal caregiver to professional coach of those who are caring for loved ones with Alzheimer’s or other dementia.
During my time of caregiving, (my father died in 2007 from complications relating to Alzheimer’s disease) I oftentimes sought out the advice of anyone I could get my hands on who might a) lighten the emotional load I was carrying; b) lead me in the right direction when looking for next steps in the caregiving process; and c) let me cry a river as I pondered whether I was doing enough for the one for whom I provided care.
Way back when I was enmeshed on my caregiving journey, I was not aware that this type of coaching service was available – perhaps it wasn’t. What speaks volumes to me is that the prevalence of Alzheimer’s and other dementia is such that more and more people seem to be adrift and searching for that beacon of light that might pull them safely to shore.
One thing I know for sure, however, is that if it takes a village to raise a child, it certainly takes at least that when trying to take care of a cognitively challenged parent, spouse, sibling, partner, or friend.
I addressed some of the issues of Driving under the influence of dementia in an article I wrote in November 2013. Back then I hadn’t planned on writing a Part 2 for this article, but after a couple local incidents involving DUI of dementia, I must provide the following.
Yesterday afternoon in a suburb of Seattle (in Bellevue), an 89-year old woman with early stage Alzheimer’s left her house for her normal daily routine of going to her favorite pancake house, then to several retail locations. She never returned home last night and as of today, she is still considered missing. I hope the outcome of her case is better than that of another elderly person with Alzheimer’s who also went on a brief errand, but never came home. (Update as of 12/28/13 6:45 pm: this woman was found safe approximately 16 hours after she first left her home. She was found 20 miles away from home. Unfortunately, she wandered 20 miles away from her normal driving area.)
On Saturday, December 21, 2013, Joseph Douret left his Seattle area home (in Issaquah), to grab dinner. He was reported missing the next day by his wife who stated that he never came home the previous evening when he left to grab some dinner for the two of them. Mr. Douret, who was suffering from Alzheimer’s, was found dead in his vehicle on Christmas Eve. Police indicated that he appeared to have died of natural causes.
Taking away the keys to a vehicle – or getting rid of the vehicle as need be – are both very difficult tasks, but these are tasks that must take place if a loved one with dementia still has access to their automobile. “But he/she is only driving a few blocks to pick up a couple items; there’s no way he/she will get lost.” Unfortunately, what should be a routine drive can become a death journey because nothing is routine for the person with a brain addled by dementia. Nothing looks normal or familiar; the anxiety ratchets up several notches; panic sets in; and the countdown begins for that person’s last hours of life on earth. Even if the person is eventually found safe, he or she will have endured a very uncomfortable time emotionally and physically. The positive outcome of that incident, however, is that it will most likely be the catalyst that spurs people on to remove all driving options from their loved one.
Please make the decision today to take action and do the responsible thing on behalf of the person with Alzheimer’s or other dementia.
It’s the not-so-new DUI that is becoming as rampant as are the increased incidences of Alzheimer’s disease in the world.
Are you enabling someone in your family by not having the difficult, yet necessary, conversation about driving safety? “She only uses the car to drive to the grocery store, eight blocks away.” Oh, is that all? Well then, nothing could possibly happen that might harm/kill her or harm/kill another innocent driver or pedestrian, or child on his bicycle zooming out of a driveway and into the street. Right?
In the attached article, Driving with dementia: the dangers of denial, I go into detail about the hazards inherent with driving under the influence of dementia, so I won’t repeat its content here, but I encourage you to take the time to give it a look-see. I’m readdressing this issue because of what I witnessed today:
- A car making an unsafe switch of lanes, barely missing the huge SUV in front of which she maneuvered her car;
- Then I witnessed this SUV – certainly not understanding the circumstances surrounding this affront to his driving – quickly passing the woman and doing the same to her as had been done to him – abruptly changing back into her lane with nary a few inches to spare between his back bumper and her front bumper;
- Now I’m behind the impaired driver who stops suddenly at an intersection (we have the green) and she puts her left hand turning indicator on, only she’s not in the left hand turn lane – she’s in the through lane and she’s risking a multiple-car pileup by her actions. I could not move to the left or right to avoid her so I laid on the horn and fortunately, she proceeded straight ahead, not making her left turn;
- Further down the road she managed to get into the left-hand turn lane and as I passed her, I clearly saw an impaired and confused woman in her 70’s who appeared unaware of where she was or where she was going.
I was in no position to follow her to assure that she was okay, but I did throw up a prayer that she would get safely to where she needed to be – without harm to anyone else as well – and that her family or someone close to her would do what was necessary to take away her car keys.
Denial about this issue doesn’t solve anything. Please make the decision today to remove the keys from a person who absolutely should not be driving because of his or her dementia.
You just may save someone’s life.
Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike. The attached article is well-worth the read, and I have a few comments of my own to add.
I acknowledge that sexual activities most likely occur in every long-term setting out there. Consenting adults – even those with varying degrees of dementia – need touch and physical connection. I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection. In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip. Or perhaps a hug and a kiss are involved. All of these actions are perfectly innocent without harm as long as all touching is consensual.
Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.
What about those patients who are already married to someone else?
It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one. The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment. (I think it’s important to not assume that adulterous motivations are in play here.) Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.
I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet. And you don’t have to agree with what I’ve stated above. The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.
One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.” The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs. There are no completely right or completely wrong answers. I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject. I take comfort in that fact.
The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved. The toll on the patient – measurable, as you will see in this Shapiro family video.
The toll on the family – especially those caring for a member with the disease – beyond measure. Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self. Can you imagine it?
Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.
If you can help monetarily, please do so: www.alz.org.
If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.
Whatever you do, please do something to make a difference.
According to the World Alzheimer’s report:
If dementia were a country, it would be the world’s 21st largest economy, ranking between Poland and Saudi Arabia. In the year 2010, the total world cost for caring for the dementia population was $604,000,000,000 (billion).
By 2050, in the United States alone, the costs for caring for the dementia population will be: $1,200,000,000,000 (trillion). That’s more than 1,000 x $1 billion.
Are you thinking of making any charitable contributions to a worthwhile organization before the end of the year?
and I’m as mad as hell about the millions of crimes that it has gotten away with.
Alzheimer’s and other dementias are unfair to the one diagnosed and to all those involved in that person’s life. The unfairness unfolds with the worst day of that person’s life – diagnosis of a disease for which there is no cure – therefore it is always fatal – and it is a disease where little progress has been made in treatment options.
Let me introduce you to two fabulous people who are no longer with us because this disease killed them. Yes, Alzheimer’s murdered them.
My father, Don, was born in 1918 in Toronto, Canada. He married my mother, Patricia, and they had three children. They became U.S. citizens in the late 1940’s/early 1950’s. My father was an extremely distinguished, courteous, humorous, and dedicated family man. He received his Alzheimer’s diagnosis on June 3rd, 2005 and I was there by telephone conference, having attended his initial neurological evaluation a couple weeks earlier. He died at approximately 12:10 a.m. on October 13th, 2007.
My sister-in-law, Nancy, was diagnosed with mixed dementia just a few months after my father died. Nancy was born in 1942 in Quincy, Massachusetts. She graduated from UCLA with a degree in flute performance and used those skills in many venues throughout her life. Nancy had three children from her first marriage – children of which she was very proud. Nancy was an extremely talented interior designer, opening her own design business in 1987 – the same year that she married my brother, Don. Nancy died from mixed dementia, that also included Alzheimer’s, at approximately 11:05 a.m. on July 4th, 2012. Just two and a half months later, my brother and sister-in-law would have celebrated their 25th wedding anniversary.
Saturday, September 21st, 2013 is World Alzheimer’s Day. One in every three seniors dies with Alzheimer’s or other dementia. If you do not die from Alzheimer’s, you die with it. From Alzheimer’s Association 2013 Facts and Figures.
Won’t you consider making a monetary donation in the hopes of capturing this murderer?
U.S. website for the Alzheimer’s Association: www.alz.org
International website: www.alz.co.uk
Other countries have their own dedicated websites as well. Please find those sites through any search engine you would normally use, and let’s slap the cuffs on this criminal disease.
Dehydration and Dementia. The attached article is a very thorough look at the importance of hydration in the elderly, and how to assure that a person with dementia – who may no longer feel the thirst response and/or does not know how to express his or her thirst – is properly taken care of.
My husband and I went for a hike last summer during which we encountered a gentleman who I would guess was in his early 80’s. It was a warm, muggy day and my husband and I each had a 20 oz. bottle of water for our 3-mile hike. The gentleman was reviewing his hiking map and we stopped to chat with him about the fork in the road and which path lead where. “Sir, do you have a bottle of water that you can drink while on your hike today?” “No – not needed; I have a thermos of coffee waiting for me back at my car.” “I wonder, sir, with it being so hot and humid, if you might benefit from taking one of our bottles of water. I would be happy to give you one we’ve not used yet so you’ll be comfortable.” “That’s very kind of you, but I’ll be fine.”
So he went on his way but I told my husband I wasn’t comfortable with this fellow being on his own and could we please follow him at a distance to make sure he gets back to his vehicle. And so we did – and he returned to his vehicle, and no doubt partook of his thermos of hot coffee. Not very refreshing.
Although hot coffee and tea certainly contain water as part of their preparation, straight water – or even fruit juice – are a better option because of their lack of caffeine. Years ago, when I would visit one of my aging family members, you could always count on him holding that quintessential cup of coffee in his hand throughout the day. Regardless of the weather – no glass of water reached his lips – except perhaps when he took his daily vitamins or medications. This message is directed to those who provide care for the elderly, those who have older family members, and perhaps this message is also directed towards you. Drink good ol’ H2O. It doesn’t have to be packaged in a fancy bottle, you don’t have to purchase it, it’s always available at the touch of the nearest faucet, and you can access 100% water faster than making a pot of coffee.
What are you waiting for? Go get a glass of refreshing water!
The attached article, written by a blogger in the UK, is straight-forward and thought provoking – it should be.
I live in Washington state, and I am glad that Death with Dignity is a legal option assuming all the legal requirements are met. This is a very personal subject matter, as is the choice that individuals will make to seize the opportunity, or to reject the opportunity. There is definitely a separate element of this option when the law is utilized for those with dementia. When is someone still capable of making the decision?
A non-profit in my state, Compassion & Choices of Washington, is an excellent resource for materials and information. They have even developed an Alzheimer’s Disease and Dementia Mental Health Directive – a first-of-its-kind directive that allows people – while still competent – to document their wishes related to who will provide their care, where care will be provided, how it will be financed, how to deal with difficult behaviors that may arise, and many other matters that both caregiver and patient face. Bless all of you who face this horrific disease that has no effective treatment, and certainly no cure.
I’m attaching the above article from a fellow blogger. He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being. The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.
Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens. Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities. Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.
Worse? Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse. I know that you and I are quick to say, “Fantastic! What a great relief that would be if the person no longer lived with his or her abusers!” We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings. These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.
These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me. Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.
That makes me mad.
I’m thrilled about the above Blog article that just happens to have been posted today, my 60th birthday! There is a lot of substantive content in my fellow blogger’s posting: a link to a New Yorker Magazine article by Rebecca Mead, titled A Sense of an Ending; Phillip Toledano’s photographs of dementia; and, of course, the Blogger’s own contribution to the topic. The aforementioned blogger, Kathie Ritchie, maintains an exceptional blogsite, http://www.mydementedmom.com.
I hope you’ll visit all of the above – and be better off as a result.
Perhaps you read the brief title of my article and before delving into its content you’re wondering: The morning after a night of drinking? The morning after doing something regretful – perhaps synonymous with the previous question? The morning after a horrific news event?
None of the above. In the attached article, a fellow blogger writes about his experience of waking up the day after his wife passed away; a day in which he felt the full impact of the loss of his wife and the cessation of his role as her caregiver – his identity for so many years.
Unless, and until, you experience this type of blurry identity, you can’t fully understand the feeling. Those of you who devoted any amount of time caring for a loved one prior to their death understand all too well the emptiness and lack of purpose that oftentimes follows the end of the caregiving journey.
I was the long-distance caregiver for my father after he was diagnosed with Alzheimer’s disease. He lived in a memory care unit of a Southern Oregon continuing care retirement community (CCRC) while I commuted from Seattle by plane, by telephone, and by 24/7 worrying and thinking. By choice, I left my full-time job and for the next four years, dedicated my time to managing his care and being the primary on-site visitor. Many of you worked full-time at your “real” job while being a caregiver for a loved one and I respect and honor you for somehow juggling all of those responsibilities. I knew my limitations, however, and reached that limit quite early in the process. The emotional and physical toll of caregiving was more than I was capable of handling on top of my other job, so with my husband’s blessing and encouragement, we did without my financial contributions while I carried on as my father’s care person.
After my father’s October 13, 2007 death at the age of 89, I returned to Seattle having spent the last hours of my father’s life at his bedside; then several days wrapping matters up with the funeral home; with the bank trustee, and with the facility in which he had lived for close to thirteen years. Although there would be many weeks of tying up loose ends upon my return home to the Seattle area, I was effectively unemployed – laid off from a job to which I was extraordinarily committed. As the blogger in the attached article mentioned – those in this position wake up the day after, and the day after the day after, feeling as though they have lost their purpose. Additionally, the identity which defined them for several years no longer applies.
Grieving and re-purposing our lives can take place during this time, a process which may take months or years; a process that is as individual and unique as ones fingerprint. As the blogger wrote in his article, he appears to be transitioning in a way that utilizes his years of being the primary caregiver and advocate for his wife. He’s recreating his working life; reshaping it to fit the caregiver role in which he flourished. Like this blogger, I too quite naturally segued into employment positions in which I could continue on the path that I had started years earlier with my father: elder advocacy, Alzheimer’s Association volunteerism, and most recently, putting all of those past and present experiences down on paper in the form of a novel.
But that is not necessarily the norm. Some of you may have felt the need to totally disassociate from anything remotely related to the caregiving or care managing roles. I understand that decision and I agree 100% that it’s the right thing for you to do. Again – how we recover and/or regenerate after the caregiving experience is a distinctive aspect of our ongoing lives. What we do have in common, however, is that we have all experienced the morning after the end of our caregiving journey. Whether we’re relieved, angered, aggrieved, or a combination thereof – the morning after is unavoidable.
In closing, I want to celebrate you – the caregiver heroes who are ordinary people, who did the ordinary right thing, at an extraordinary time. You are a hero to many, and you are a hero to me.
The article above is from one of my favorite bloggers, Frangipani Singaporenicum. Her journey as a caregiver involves her mother. Her storytelling of what that involves is really quite genius.
This article addresses the question as to whether or not the person with dementia is the same person they were prior to onset of disease; and if they are not …
then who are they?
Once you’ve read her article I believe you’ll have a clearer perception of what dementia takes away – and leaves behind – during the progression of the disease.
I’ve attached, above, a link to a fellow blogger’s site. The message is short and instructional.
What resonated with me about the statement provided in the link, is that each of us has experienced the after effects of walking in the midst of someone’s bad day and we inadvertently become the recipient of that bad day’s vibes. And sometimes the shoe is on the other foot. It’s unavoidable. I guess that’s why the words of wisdom provided in the link, are words that we all need to take to heart.
When I think about the subject of having to tell someone some bad news, I think of the conversation: “I’m not gonna tell them – YOU tell them!” “No, I’m not gonna tell them – YOU tell them!”
No one wants to be the harbinger of bad news – especially news that will change peoples’ lives forever. When friends and family need to hear the news that someone in the family has recently been diagnosed with Alzheimer’s or other dementia you wish it was as easy as the task you avoided at work – telling your cubical-mate that he has bad breath. Nope – when lives are at stake – and quality of life issues are at stake – the ballgame changes – certainly not for the better.
In the attached article above, you’ll read the story about a family who had to make the agonizing decision about who to tell about a wife’s early dementia diagnosis – and when to tell them of the news. What’s so beautiful about this husband’s telling of the story, is how much he took his wife’s feelings into account when determining the best conversational course to take. The route he and his adult stepchildren chose was not one of denial, such as can be the case in some instances, rather, they faced the reality of this cosmic shift in their lives, and did what worked best for them and for their loved one.
Each circumstance is different – and those involved need to make appropriate decisions that fit the dynamics of their particular situation. (It’s certainly not a one size fits all solution.) And let’s face it – when someone starts out on this caregiving journey – it’s definitely a matter of on-the-job training. In the above family – it appears to have been done quite well.
Attention one and all! There’s a new website out that will be addressing the challenges of being a caregiver. The author/owner of this website, Don Desonier, is coming from the perspective of someone who very recently lost his spouse as a result of dementia complications.
Don’s five-year journey as a caregiver provided him with heart-rending experiences from which he garnered exceptional insight and wisdom. I personally look forward to his article postings – so much so, that I became his first blog follower. At the very least – why don’t you check out the website and visit from time to time. I feel confident that you’ll walk away feeling renewed with the realization that you’re not alone, and somehow or another – there’s a way through this difficult journey that you’re on.
I commend this Blogger, and I love him. Don is my brother and he was an extraordinary caregiver to his wife of almost twenty-five years.
Grief – when one experiences a loss, there is no way around this emotion. It has no clearly defined end. It manifests itself differently for every individual. The writer of the above article shares the personal side of how this emotion presented itself in his own life in this continuation of his series of articles on grief.
This “personal snapshot” is a follow up to his first article in the series that addressed an event in ones life for which everyone’s grieving experience takes on a slightly different character. I hope you’ll read the article attached above, and his previous article – also available on his website.
The attached link, written by a blogger in Singapore, describes his experience as a cab driver when he picked up a woman with dementia who needed to get from Point A to Point B but who lacked the cognitive capacity to effectively do so.
Personally, I think he excelled at compassion and even though he feels he could have done more, I respect him for what he did do. We don’t want to entertain the thought of someone who might have taken advantage of this woman but there are many who would have looked at this situation as an opportunity to exploit her vulnerability.
I congratulate you, Lim James, for showing all of us that goodness exists, and it exists in your soul.