Caring for a loved one is a full-time job, as one of my fellow bloggers clearly illustrates in the attached article. Please read her article, especially if you’re not quite aware of how full the carer’s day can be.
My father died of Alzheimer’s 10/13/2007. I’m on the left, then my hubby, then my brother.
There’s a reason why the book, The 36-Hour Day (now in its 6th edition) is so popular with health professionals and family caregivers. The subtitle for the book reads, A Family Guide to Caring for Persons with Alzheimer’s Disease, related Dementias, and Memory Loss. As the former caregiver for my father who died from Alzheimer’s in 2007, I can verify that whether you are providing hands-on care or managerial long-distance care for a loved one, your job never ends. A normal day is a relative term that changes with every day or hour – or as is sometimes the case – every minute.
My article, A normal day, caregiving style, throws a spotlight on how a patient’s and caregiver’s life changes once a diagnosis has been delivered. The concept of normal is an ever-changing paradigm where the sand on the beach shifts so much, one can barely hold herself upright.
I celebrate all caregivers who manage this extraordinary task so well, and so devotedly. You are a hero to many.
Treatable Conditions that Mimic Dementia – AARP. I am so pleased that AARP published this article about false positives for Alzheimer’s disease. Because of the high incidence of Alzheimer’s disease and other dementia, we have all become very sensitive to any abnormal cognitive challenges in our lives. A few people have said to me, “I keep losing my keys. I forget where I place them. Do I have Alzheimer’s?” I’m not a medical professional but I have been trained by several in the profession. Teepa Snow, one of America’s leading educators on dementia, had this response to that type of question, and I paraphrase:
If you forget where you’ve put down your keys, you may not have dementia. If you forget what they are or what they’re used for, you could very well have dementia.
Several years ago I underwent extensive neurological testing due to troubling cognitive symptoms. Turns out, the cause was a medication I was taking. Once I went off the med, I was 100% fine.
The attached AARP article provides possible reasons for cognitive abnormalities that are not Alzheimer’s disease: medication, urinary tract infection (UTI), diabetes, thyroid, and depression to name a few. That being the case, even if you forget what the car keys are for, you still may not have Alzheimer’s or other dementia.
In my attached article, Medications: harbinger of cognitive decline? I address just one of the causes for a false positive Alzheimer’s diagnosis. Please read that article, to be sure, but also read the attached piece by AARP. You deserve to have peace of mind by finding out if your symptoms, or those of a loved one, are reversible. And by all means, be bold enough to demand that your treating physician rule out all other possible conditions before putting you through the grueling neurological testing that many physicians prescribe as first steps, rather than the last resort when determining the cause of a patient’s cognitive decline.
The New York Times article The Science of Older and Wiser by Phyllis Korkki, provides a scientific, yet personal, foray into the location of where wisdom resides.
The article also addresses levels of importance between the speed with which information is retrieved from one’s mind versus a life filled with meaning, contentment and acceptance. Speedy retrieval of information appears to belong to those who are younger than Baby Boomers while those who take longer to tap into a data-filled mind are us Baby Boomers or older for whom information retrieval falls second. Once that information is retrieved, however, it is used to gain insights and perspectives that form the basis for wise behavior and decisions.
Must everything in our lives function at breakneck speed? Consider these synonyms for fast, or quick:
speedy
swift
express
high-speed
immediate
expeditious
brisk
hasty (haste makes waste!)
from “The Colors and Letters of Jen Elek and Jeremy Bert” (Seattle-based artists)
We live in such a fast-paced world that we find ourselves snapping our fingers at how long it takes to make a cup of K-Cup (pod) coffee. We want it now! Now, I tell you! What’s taking so long? We will even pay extra when traveling by plane in order to use TSA’s faster Pre-Check security lane, and we’ll pay an annual subscription to Amazon.com to get free 2-day shipping for the plethora of things we purchase there.
But is faster always better than reflective contemplation?
Consider some definitions of wisdom provided in the above-attached article:
“True wisdom involves recognizing the negative both within and outside ourselves and trying to learn from it.” (Ursula M. Staudinger, The Berlin Wisdom Project);
Wisdom is characterized by a “reduction in self-centeredness.” (Monika Ardelt, associate sociology professor, Univ. of Florida, Gainseville);
If you are wise, “You’re not focusing so much on what you need and deserve, but on what you can contribute.” (Laura L. Carstensen, founding director of the Stanford Center on Longevity, California); and
An important sign of wisdom is generativity, which means “giving back without needing anything in return.” (Dr. Daniel Goleman, author of Focus and Emotional Intelligence, psychologist, science journalist.)
Given the descriptions for the word “fast” and the characterizations for the quality known as “wisdom”, what will your life’s main focus be as you graduate through the various stages of aging? Unless your later years involve being the fastest on the ski slopes, or the quickest person to complete the NY Times crossword puzzle, consider this element of successful aging: “(M)ost psychologists agree that if you define wisdom as maintaining positive well-being and kindness in the face of challenges, it is one of the most important qualities one can possess to age successfully.” (Phyllis Korkki, New York Times)
And yet many drivers that are cognitively impaired are doing just that. Justin Runquist’s Seattle Times article, attached above, addresses the wave of aging drivers that has swept onto our roads. I’ll be the first to admit that dementia isn’t always the impairment associated with aging drivers. Sometimes medication side effects and/or slower response times – even without Alzheimer’s or dementia – can be the cause of accidents that can harm the driver, and anyone in his or her path.
In this article, however, I address the type of DUI that does involve dementia. As I mentioned in my two part series: Driving under the influence of dementia and Part 2 of that article, there are far too many news reports covering the risks of impaired driving – many of which end in disaster.
My dad (circa 1980’s) gave up his car keys shortly before being diagnosed with Alzheimer’s.
How can we possibly take comfort in denying that either ourselves or our loved ones should no longer get behind the wheel? This type of denial is dangerous but it is possible to get around the difficulties associated with this subject without alienating yourself or others.
For those of you who are still driving and who have considered even once that you shouldn’t be doing so – please read all the articles attached within this blog entry and then decide if you still feel comfortable driving a weapon that might kill you, or someone in your path. And for you adult children who have felt the same uncomfortableness surrounding your own parents’ driving skills – take heed and act before it’s too late.
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
Today, however, I am making a one-time exception because it appears that mice brains have become very valuable in the medical and science worlds’ attempts to map the human brain, and mapping the human brain contributes to the effort of solving brain diseases such as Alzheimer’s. I’ll leave it up to you to read the full article, attached above, because my efforts at summarizing scientific jargon would fall short of doing that science justice.
What I will say, however, is that I am extraordinarily excited that valid attempts are being made to decipher the science of our brains; attempts that generate hope in the lives of those of us who have personally experienced the destruction of a loved one’s brain by Alzheimer’s – a disease that I’ve been known to call “a murderer.” Read my article, Alzheimer’s disease is a murderer to understand the full impact of my feelings on the subject matter.
I know that a lot of behind the scenes research is being done to eradicate a disease that is always fatal, but we aren’t always privy to what that research looks like. I’ve read numerous horrific statistics about the numbers of people who have – and will have – Alzheimer’s in the years to come. Part of those statistics include the detailed monetary impact on society as a whole, as well as the personal and emotional costs to each of us who have dealt with, and who have yet to deal with, the disease’s intrusion into our lives.
I congratulate the Seattle Times and the New York Times, for publishing the above article. And I sincerely thank the Allen Institute for Brain Science for taking on a task whose efforts will benefit every last one of us in this country, and around the world.
You are my hero Paul Allen. Keep up the good work.
If the monster called Alzheimer’s is going to get you, you may as well be prepared.
How I’m Preparing to Get Alzheimer’s, is a 6 minute and 24 second video recorded in June 2012 at TED Global in Edinburgh, Scotland. This brief talk by Alanna Shaikh will do more to wake you up about this disease than anything you’ve heard thus far.
If there is even the slightest chance that one of us will get Alzheimer’s or other dementia – and trust me, there’s more than the slightest chance – then we’d better start shaping what Alzheimer’s will look like for you and me. Here’s an example.
Ms. Shaikh’s father has Alzheimer’s and she talks about the various hobbies and interests held by her father when he was healthier and how those interests carry through during the Alzheimer’s disease process. He was a college professor at a state school and as Alanna put it, “he knows what paperwork looks like.” Now in the depths of his disease, someone can put any type of form in front of him and he will gladly fill it out, arbitrarily writing his name or numbers on the various lines provided, and he’ll check the boxes littered throughout the form. He flourishes in that engagement of his time.
What happens, however, when your favorite hobby pre-disease is reading and editing academic journals, racing cars, or using electric shop tools to make beautiful well-crafted furniture? How will those hobbies or skills survive the disease process? Not very well. So Alanna has come up with three things that she’s doing now to prepare her for the possibility of the Alzheimer’s monster invading her life.
Please watch Alanna’s video. I think you will be impressed by her thought process.
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
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.
However …
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.
My hero – my father: 1918 – 2007
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.
Lately I’ve read various blog posts mentioning that employees of long-term care (LTC) facilities are routinely disregarding the rights of their residents. What’s that you say? You didn’t know that when these older folks walked through the doors of a facility, thus giving up their cherished long-term independence, they actually gained rights that they never had before? Here’s some information that will benefit you and your loved ones. I’ll explain by way of providing a few examples:
Charlie moves his mother into a facility and the head of Health and Wellness strongly suggests that he not visit her for awhile so she can adjust to living in a different environment.
WRONG! If mom wants her son to visit her, Charlie should ignore the “advice” of the H&W employee and visit mom as often, and as long, as he and his mom wishes. Logic: What do you think benefits mom most? The calming presence of her son who has been the only constant in her life, or the absence of any person or thing that would lessen the feeling of abandonment in a strange environment?
June, who is confined to a wheelchair, is forced to go to an activity by facility staff. Apparently June’s family has asked staff members to make sure that June gets out of her room and socializes with other residents. On this particular day June would rather stay in her apartment and watch game shows on television.
Who wins this argument? June should because it’s her life, and neither staff, nor family, can force her to do anything. Logic: Doesn’t someone who’s lived at least 7 or 8 decades have the right to make decisions that are important to her? Yes – and that right is protected by law. Legal implications: June is reliant on others to transport her to and from places, therefore when she’s taken to the activity room against her wishes, the law considers that action as physical restraint because she is “stuck” in the activity room and in her chair, and not able to physically move herself elsewhere on her own steam. Additionally, the facility is guilty of coercion – forcing June to do something she doesn’t want to do.
George joins his buddies in the dining room for lunch and orders a chili dog and a Bud Lite. When the meals for him and his buddies are served, George’s chili dog has been pureed and his beer has been substituted with a glass of iced tea.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
Rights infractions: The server talked about a medical condition in front of his buddies by mentioning two medical conditions: George’s choking hazard and his diabetes. That’s a violation of his privacy rights. George is aware of the choking incident – and he is also aware that alcohol may not be such a good idea because of his diabetes – but he is making an informed decision to eat and drink what he wants, knowing all the risks involved. Solution: Oftentimes facilities are worried about liability in these types of situations – very understandable. To resolve such a concern, all that is needed is to conduct a “care conference” in which the health & wellness director, George, and perhaps his doctor by phone, discuss the risks inherent with George’s decisions. They can easily discern that George has weighed the pros and cons and that although he acknowledges that doctor’s orders have been issued, George decides to disregard said orders. Care conference notes should indicate the gist of the discussion; perhaps everyone in attendance signs their name agreeing that what is written in the notes accurately reflects the points covered in the discussion, and then everyone should be happy and no lawyers need to be involved.
I strongly suggest that you contact the long-term care ombudsman in your state should you have any inkling that your loved one’s rights are being neglected. Visit the National Ombudsman Resource Center (NORC) and join with them to advocate for your loved one. Everyone deserves to be treated with dignity, and certainly all of you would agree that all people should have a satisfying quality of life regardless of ones’ age and residential environment.
Final thought: put yourself in your loved one’s position … what would you want done on your behalf?
Submitted by Boomer98053, a retired Certified Long-Term Care Ombudsman.
The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother. The same could have been filmed of a spouse-caregiver because the message is the same.
Please make every effort to watch this film straight through without distraction. I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.
There is no denying that caregiving is extremely difficult. But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.
One of many walks my father and I took.
As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life. I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.
I feel blessed to have been on the caregiving journey with my father. And my, oh my, do I still miss him.
More Alzheimer’s patients finding care far from home | Nation & World | The Seattle Times. This article looks at the direction in which Alzheimer’s care may be shifting. There are currently 44 million Alzheimer’s patients globally with 135 million projected by 2050. Even now, Western spouses and family members are faced with an insufficient supply of qualified nurses and facilities, while other countries provide cheaper – and to some minds, better – care for those suffering from an illness for which very few effective treatments have been developed, and that is always fatal.
(Photo credit: Wikipedia)
The treatment center that is the major focus of this Associated Press article is located in Thailand – the Baan Kamlangchay center. Additional elder care options in other countries are mentioned, such as the Philippines, Eastern Europe, Spain, Greece, and Ukraine. Cost is the driving force of those who are “exporting” (not my word) the elderly to these foreign countries. One gentleman from Switzerland brought his 65-year old wife to Baan Kamlangchay because the monthly cost for her Alzheimer’s care ($3,800) is a third of what he would pay in his own country and he states that the staffing ratios are far better, and the activities more engaging. In the Philippines, care is offered to Americans for $1,500 to $3,500 a month, compared to the average of $6,900 for a private room in a skilled nursing facility in the United States, according to the American Elder Care Research Organization.
Cost shouldn’t be the only consideration, however, when moving a loved one into Alzheimer’s or dementia care – and that applies to every country in which that care is available. What are the training requirements for those who will be providing this disease-specific care for your loved one? What type of governmental or social service oversight is in place to protect and advocate for the rights of those patients who can not advocate for themselves? The latter question becomes extremely relevant when the patients’ families are not around to observe care on an ongoing basis. In the previous paragraph I mentioned the man who brought his 65-year old wife from Switzerland to Thailand for care. He is now faced with the very difficult decision of perhaps leaving his wife of 41 years in the facility, and returning to Switzerland to carry on the rest of his life.
That’s a decision unbearable in its emotional implications.
What are your thoughts? Are you willing to become an expatriate should this medical need present itself in your life?
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.
I’ve made a few edits to this article that I wrote in April of 2012. I’m re-blogging it because I know that the Holiday season may be joyful for the multitudes, but that is not always the case for everyone. I’m thinking of the reader who simply wishes this season would end and that a new year would begin…a new start that might herald in a smidgeon of much-needed peace. This one’s for you.
Do you find peace within the circle of your family; or does meditation or prayer, an inspirational book, or music fill your soul? Wherever the source – how do you keep that peace from slipping away?
Certainly when we’re exposed to sorrowful or earth-shattering news, any semblance of peace and calm seem to disappear, such as: acts of terrorism – both domestic and abroad; heartless school shootings; bigotry and hatred; and even devastating illness. How many times has your armor been pierced by such circumstances?
Too many to count. So how do we find peace amongst the chaos?
We can find peace in many small ways – probably the easiest way to do so is to acknowledge the beauty that surrounds us. It doesn’t matter whether you’re a creationist or an evolutionist, the beauty you see is the same. It’s always refreshing when I walk through my local plant nursery,
A recent NY Times article, On Dying After Your Time, poses many topics for discussion that must be addressed. I knew before I even started to read the article that readers will have varying opinions on the matter of extending life beyond its appointed time to die. These opinions will be based on ethics, biases, age of the reader, and religious beliefs, to be sure, but another factor that comes into play is the personal experience of each reader.
My father and my sister-in-law, both of whom have died from Alzheimer’s in the past five years.
If the reader has watched a loved one perilously balanced in limbo with a ravaged-by-disease body and/or mind, that reader might lean towards declaring that too much is being done to artificially prolong life. In the past five years of my life, I have watched both my father and my sister-in-law die from Alzheimer’s. Who they were at the end of their lives didn’t come close to resembling who they were pre-disease. If the reader has had no experience with this aspect of life and death, that reader may feel more comfortable with the decision to throw every treatment possible at the patient with the goal of allowing that person to live as long as humanly – or scientifically – possible.
One of the issues presented in the NY Times article is the fact that as we live longer, there is an increase in the amount of chronic illnesses – a fact that certainly stands to reason. “This rise in chronic illness should also give us pause about the idea, common to proponents of radical life extension, that we can slow aging in a way that leaves us in perfectly good health…The evolutionary theory of senescence [growing old; biological aging] can be stated as follows: while bodies are not designed to fail, neither are they designed for extended operation.”
The author of the NY Times article is an 83 year old man who closes out the piece by stating, “We are not, however, obliged to help the old become indefinitely older. Indeed, our duty may be just the reverse: to let death have its day.”
If you haven’t yet formed an opinion on the matter of life-extension at all costs – I encourage you to do so before it’s too late. Life and death decisions are best made well in advance of the necessity of such decisions.
You can’t open a newspaper these days without reading about budget cuts to Federal, State, and City services. Memos are flying around these offices demanding across the board reductions or else!
The State of Washington figured out a way to save more than one million dollars and its Department of Social and Health Services is the brainchild of this impressive savings coup: deprive those with developmental disabilities the required services mandated by law that help them to function better in society. The required services include physical and occupational therapy, personal-care training, speech therapy, guided behavioral norms, job skills, and recreation.
Two dozen developmentally disabled residents of Lakeland Village in Spokane, Washington – a state and federally funded long-term care facility – were denied these services for two years – most likely causing irreparable damage to these residents. Let’s see – two dozen residents for two years – how many times was the law broken as a result?
41,231 times
How did they pull it off? They moved a couple dozen residents from the intermediate-care facility of Lakeland Village into its nursing facility which is cheaper because that part of the facility does not have to provide the specialized services that the developmentally disabled residents need. The relocated men and women received excellent medical care – most of which wasn’t called for – but they were deprived of all the quality-of-life services they needed most. This violation of federal law means that the facility received federal funds in error – funds that were meant to cover legally mandated services at the facility.
When the investigation was launched and DSHS was told to provide documentation for the time period in question, there was little evidence that the specialized services had been provided. In response, DSHS stated, “We didn’t make good documentation, or indeed, we didn’t provide some of them (documents).” It is thought that the reason the paperwork wasn’t found, is that it doesn’t exist.
The State tried to cut its budget by $1 million by fraudulently withholding required care services. The investigation continues while it is estimated that the federal government will penalize the State of Washington/the Department of Social and Health Services in the amount of $16 million.
(Photo credit: Wikipedia)
But you and I already know that the biggest price has already been paid by the disposed of human beings.
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.
My father, on the right, with his brother, Armand, beside him.
My father, Don Patrick Desonier, born March 12, 1918 in Toronto, Canada is my Veterans Day hero. He was still living in Toronto when World War II broke out in the late 1930’s. A young man of approximately 21 years of age, my dad voluntarily signed up for the Canadian Army and served in the artillery division as a Second Lieutenant or – because the Canadian Army spoke both English and French – Sous-lieutenant.
My father was bi-lingual because his father was French Canadian – a descendant of French settlers in Canada. The correct spelling of our last name was Desaulniers, but when my parents and us three kids settled in the United States, my parents grew weary of the mispronunciation – and misspelling – of our surname, so in the 1950’s, mom and dad had our surname legally changed to its current spelling.
When my father died on October 13, 2007, many of his effects were distributed to my brother and sister, and me. I have some amazing black and white photos from WWII as well as a couple German handguns – both of which are locked in a wall-safe in our house. A couple years before my father died from complications of Alzheimer’s, he and I had a brief, but eye-opening discussion about his war service.
My father fought in France, Germany, and England and saw it all – I know this because I asked him. Our conversation went something like this:
“Dad, I have to assume that because you were in the artillery and served in several WWII hotspots, you were called upon to kill those who were designated as the enemy – right?”
“Yes, Irene. No one wants to take someone’s life, but when it’s a question of the enemy taking a bullet or you and your buddies, you choose the former.”
“So dad, you saw your buddies get severely injured and even killed – didn’t you?”
“Yes – that’s the way it is on the battlefield.”
I looked at my father, tears in my eyes, and for the first time in my life, I said, “Thank you for your service, dad. I appreciate all that you did to defend what was right during World War II.”
His response – and I paraphrase: “It’s just something you do, Irene, because it needs to be done. No one likes war, but thus far no war has ever ended on its own. Unfortunately wars don’t just peter out.”
Those of us Baby Boomers who have parents that fought in the earlier wars may not have considered what they endured before they started a family and got on with the rest of their lives. I hadn’t, but I’m grateful that in my late 40’s, I asked dad about his military service, and I thanked him for it.
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.
(Photo credit: Wikipedia)
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?
(Photo credit: Wikipedia)
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.
Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP. The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving. A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”
My dad and I, five years before I became his caregiver; seven years before he died from Alzheimer’s.
Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment. Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing. She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.
In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second. “No way,” you say, “my mom/dad/spouse come first; they need me!” You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them. That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.
Most of us learn the hard way. We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno. Do yourself – and your loved one – a favor. If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself. You will benefit from such care, and so will your loved one.
I wrote the article below with an exhilaration that threatened to carry me into the air and cradle me on Cloud 9.
Donning silly glasses and cozying up to a bottle of bubbly that remains unopened.
Since that time, the children in Washington, D.C. have been battling it out on the playground, most not playing fairly, and all of them holding strong to an agenda that appears to be designed to promote their party, rather than their constituents.
I wondered aloud, “If thousands of national parks are closed, 100’s of thousands of employees are furloughed, and service members’ families are being robbed of benefits, what luck does the Alzheimer’s research money have of remaining designated for that cause?”
So I wrote an e-mail to the National Institutes of Health and asked them this very question. What follows is the automated response I received:
Due to the absence of either an FY 2014 appropriation or Continuing Resolution for the Department of Health and Human Services, no one is available to respond to your message. If you require immediate attention, please contact NIH Service desk at 301-496-HELP or via web http://itservicedesk.nih.gov/support.
Asked and answered.
September 25, 2013
NIH logo (Photo credit: Wikipedia)
In today’s news, the National Institutes of Health (NIH) announced that grants for research to discover therapies for Alzheimer’s disease have been awarded in the amount of $40 million from the Office of the NIH director, and $5 million from the National Institute on Aging.
In all the reading that I’ve done, I’ve discerned that the magic words when it comes to finding treatment and/or a cure, are “clinical trials.” The new funding of $45 million will advance the current research being initiated in the form of clinical trials, thereby offering hope to all of us who live long enough to be at risk for acquiring this disease.
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.
My father and my sister-in-law, both of whom have died from Alzheimer’s disease in the past five years.
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 hero – my father: 1918 – 2007
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.
Nancy, an adoring daughter-in-law to my father, seated in front of her.
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
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.
“Mr. Desonier, I think you can stop scheduling an annual colonoscopy from this point forward. You’ve been very diligent about this aspect of your health care for many years, but at your age, I think this procedure provides inconvenience and discomfort that you can do without.”
My dad was 84-years old when his gastroenterologist made that declaration. I never thought I’d say this, but that gastroenterologist is my hero. My father had one suspicious colonoscopy a decade or so earlier, and was advised to undergo that test every year to be certain that no cancer was present. If you’ve ever undergone this test – and you should have a baseline one after the age of 50 or earlier if you’re symptomatic – you’ll understand when I say that I’d rather have a root canal than have my colon flushed and probed every year. Here’s TMI for you: I’m 60 and had my first exam of that sort seven years ago and passed with flying colors. I’m on the ten-year plan so I have a couple years left before I hop on that table again. But I digress.
The above article will shock you to your senses as to how incentivized doctors are to keep prescribing outlandish medical procedures on their elderly patients. Most, but not all, such procedures benefit medical professionals and facilities and provide no benefit to the patients that undergo such procedures. Here’s a quote from the above article that is sickening in its implications:
(Photo credit: Wikipedia)
Medicare spends a quarter of its $551 billion annual budget on medical treatment in the last year of life. A third of Medicare patients undergo surgery or an intensive-care-unit stay in their final year (of life.)
The author’s 80-year old father had a “stroke-blasted” body and underwent the surgical procedure of having a pacemaker installed to correct a slow heartbeat that gave him no health problems. Medicare paid $12,500 for that procedure. Her father’s family doctor didn’t approve of the cardiologist’s decision to perform that surgery. Medicare would have only paid that doctor $54 for a medical consultation with the family to weigh the pros and cons of such a procedure.
What’s the lesson here? There needs to be a greater focus on slow medicine in the form of palliative care, rather than fast medicine that dictates quick consults and immediate – and oftentimes drastic – medical intervention that robs the elderly patient of living on his own terms, and dying when its the body’s time to do so.
The above public service announcement shines a spotlight on a disease that will affect you one way or another:
My father died of Alzheimer’s 10/13/2007. I’m on the left – it could happen to me; my brother is on the right, it could happen to him.
You may receive an Alzheimer’s diagnosis or I may receive an Alzheimer’s diagnosis
A loved one of yours may receive an Alzheimer’s diagnosis and you’ll be his or her caregiver
A good friend of yours; a neighbor; a coworker may receive an Alzheimer’s diagnosis
The point is – just as all of us know someone who has had, or currently has, cancer – all of us have some sort of connection to someone who has Alzheimer’s or other dementia.
None of us is immune to this disease that steals a person while their heart is still beating.
When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things. Didn’t you feel better once you checked that “To Do” item off your child-rearing list? I know I did.
My father in mid-stage Alzheimer’s.
“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!
My mother and my daughter, circa 1977.
Or perhaps it’s the other way around. The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues. Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.
Consider this scenario: Dad is dying of cancer and in a coma. Your mother has already passed on, and you have no idea what your dad wants. His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma. Does he want breathing assistance? Does he want intravenous liquids and nourishment? Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?
What’s a son or daughter to do? Wing it?
Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious. There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids. Her body is in the active stages of dying.
In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive. You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father. Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world. When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.
What’s a son or daughter to do? Follow mom’s wishes.
What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them. It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible. The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.
Both of my parents gifted me and my two siblings with documented specific wishes for their life and death. My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t? My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer. There was no guessing when it came to the time when us three adult kids rushed to his bedside. He was comfortable in his death, and we honored him by following his wishes for no intervention. Did I want my dad to die? God no. I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.
A fellow blogger whom I greatly respect, wrote the above article that tells a story of aging, loneliness, intuition, and follow through.
There is a holiday celebrated on September 28th called National Good Neighbor Day. In the above linked story, a good neighbor noticed that she hadn’t seen one of her neighbors in awhile, so she acted on her concern. The story that unfolds could be a made-for-TV drama! Concern drew her to investigate and her gut wouldn’t let her turn away.
I think all of us need to trust our gut more frequently, which I learned for myself back in July. I’ve attached an article I wrote on that experience called – coincidentally – Trust Your Gut.
No one is an island, entire of itself; every man is a piece of the continent. – John Donne
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.
(Photo credit: Wikipedia)
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.
(Photo credit: Wikipedia)
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!
Fellow blogger, Don, talks about his caregiving journey with his wife in which he swore off getting sick because – quite frankly – he couldn’t afford to be sick when his caregiving duties required that he be healthy and available 24/7.
One could argue that just being worried about getting sick might make one sick, but fortunately, that was not the case for Don. Having read many of his articles, it appears that he knew what was required of him as a caregiver – the same thing that is required of all of you who are still on your caregiving journey: assemble a team, spread out the duties, and seek emotional and physical support in whichever form you need.
First and foremost, please read Don’s article attached above. After you have done so, I hope the three articles below will also prove beneficial towards providing direction on how one might assure a successful medical and mental health caregiving journey. When you take care of yourself, you’ll be better equipped to take care of your loved one.
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
The above mini-article, This Magic Moment, by a fellow blogger, is magnificent in its message of hope, love, and connection.
Dilemma: The server tells George that his doctor ordered a pureed diet because George almost choked on a roll at a nearby restaurant and he risks aspirating on his food. The server then tells George, and anyone within hearing distance, that his doctor also said George should not drink alcohol because of his diabetes.
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.
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?
Living: the ultimate team sport 