This Blogger, Richard Kenny, really has a way with words as he describes the challenges – and sometimes the joys – of his caregiving role as a son to his mother who has Alzheimer’s and to his father who struggles to be the spouse of a wife with Alzheimer’s.
Very much worth the read – and I don’t just mean this one article. Many of Richard Kenny’s observations and musings so clearly reflect his day-t0-day frustrations as well as his somewhat new found ability to adapt to every unforeseen circumstance.
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.
When the Mind Says Goodbye is a thoroughly touching mini-video (less than 5 minutes long with beautiful music accompaniment) chronicling a married couple’s journey as best friends in early childhood, all the way through their marriage – currently a more than 87 year-long relationship.
This couple, George and Adriana Cuevas, show us how a lack of words does not have to limit ones ability to relate to, and comfort, a loved one. I hope you will take the time to observe this loving couple as they walk through the hallways of Adriana’s memory care unit, and as they sit side-by-side with only touch and eye contact as a communicator.
It seems to work for them. How lovely that their marriage commitment lives on, even when the mind has already said goodbye.
I strongly encourage you to read the above article. Too often physicians with insufficient training on elder-health issues dismiss the early signs of Alzheimer’s or other dementia as simply being age-related developments. Doing so presents the risk of missing the small window of opportunity in which to treat cognitive issues early on, rather than when they have fully taken up residence in a patient.
Sure, there’s nothing yet that prevents or cures the disease, but being able to manage the symptoms early on certainly adds to the quality of life that both the patient, and their loved ones, seek to experience.
For those of you who have taken on the role of advocating for your loved one: when you escort your loved one with early memory loss or confusion to the doctor’s office, do not back down when he/she concludes the symptoms are to be expected due to advancing age. NO! Those symptoms could very well be indicative of disease-related dementia, OR the symptoms could be caused by medication side-effects (blood pressure medication, seizure medication and the like) or other medical conditions, such as urinary tract infection (UTI.)
It’s all about advocacy. Do you go the easy route and take the doctor’s word for it, or do you push for worthwhile diagnostics to rule out any other serious or life-changing causes?
For those of you who have not experienced the stresses of caregiving, or being the point-person for a loved one with dementia or other debilitating disease – please read the above-linked article. It will give you a wee taste of:
a) the toll that caregiving takes on loved ones;
b) the toll of being a spouse with someone with dementia; and
c) the extreme frustration of trying to communicate with professionals while coordinating care for your loved one.
Please read this article – it will give you a healthy respect for your coworker, neighbor, family member – who is on duty 24/7 with caregiving tasks. Whether the caregiver is performing these tasks long-distance, as was the case for me in relation to my father’s care, or performing them on-site, the task is monumental and deserves a great amount of respect and understanding.
Thanks are due to the author of this article, linked above, who provides a list of movies with an Alzheimer’s or other dementia story line. How timely, as my husband and I were discussing last night how a few of the novels we’ve read recently have an Alzheimer’s story weaved through the book.
I told my husband that this seeming anomaly is not surprising due to the pervasiveness of the disease in so many households throughout the world. In my family, my father died from Alzheimer’s complications in 2007, and my sister-in-law died at the age of 69 from mixed dementia. I know there are many of you who at the very least know of someone affected by the disease.
My oh, my – such a difficult subject to broach with a family member when you know that he should put down the car keys and let others do the driving for him. The article linked above from NBC Nightly News is a good source of tips on how to handle this very familiar problem. I address this issue in my article: Driving with dementia: the dangers of denial. Although dementia is usually one of the most talked about reasons for taking away someone’s car keys, there are other reasons that are just as important that must not be ignored:
Age-related slow reaction times;
Medications that might cause dizziness and/or slow reaction time; and
Impaired eyesight and hearing.
Not wanting to hurt a loved one’s feelings should not be the reason to avoid this subject matter. Let’s face it, your loved one’s safety and the safety of absolutely everyone else is at stake here. There are already so many dangers on the road with drivers talking or texting on their cellphones, driving under the influence of alcohol or drugs, doing any number of distracting functions such as eating, personal grooming, changing a tune on your I-Pod, or being distracted by children or dogs in the back seat. Now add someone who is impaired by age or cognitive disease and the risks to others increases greatly.
If you or a loved one are facing this important and difficult step, please read the attached NBC article linked above and also take the time to look at my article, Driving with dementia: the dangers of denial that provides encouragement for how you might take care of this very important matter of safety.
A 2012 issue of AARP The Magazine contained an exceptional and gritty article about caregiving. The focus is primarily on the role a spouse plays in taking care of a dying spouse – in this case, a wife with ovarian cancer – but the caregiver may also be attending to an ailing spouse or parent with a debilitating disease such as Alzheimer’s or other dementia.
In the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife. The first paragraph of the article will grab you:
It’s the one vow that can really come back and bite you in the butt: “…in sickness and in health.” On your wedding day the phrase conjures up visions of tiptoeing into a sun-drenched bedroom with lunch on a tray for your wife…What you don’t expect it to mean is crouching in the harsh fluorescent glare of a hospital treatment room and holding her head to yours, trying not to faint as a technician inserts a large needle between her ribs to suction two liters of fluid from her lungs.”
The role of a caregiver is one that not many will be able to avoid. Currently across America 43.5 million people are caring for a loved one who is 50 years or older. I’ve done it. My brother’s done it. Chances are, you’re doing it too.
AARP Caregiving Resource Center is a magnificent tool for all of you who are involved in caregiving. If you’re sitting there saying you don’t have time to check out this caregiving resource, you need it more than you can imagine.
Please start taking care of yourself and check out the resources that have been developed just for you.
The above video is amazingly dramatic and not just because it’s so well done and the music is so compelling. It’s dramatic because it speaks of facts about Alzheimer’s and other dementia that are hard to wrap your mind around.
Here’s one fact I’ll provide, and then I encourage you to watch this two minute video to increase your awareness of this insidious disease.
The Fact: there are 15 million caregivers currently living in America. If caregivers were the only residents in one of the states in the United States, they would completely populate the state of Illinois – the 5th largest state in the country.
Awareness is key – pass this link on to others so that greater attention is placed on this disease that is the ONLY cause of death among the top 10 causes of death in America without a way to prevent, cure, or even slow its progression.
The exceptional article linked above focuses on the aftermath of losing someone for whom care was provided, and walking amongst the presence of that someone by virtue of their lingering essence; an essence that can not be bagged up and placed at the curb. Even the photos this blogger provides elicit clear images from when my parents died – thirteen years apart.
(Photo credit: Wikipedia)
My father took comfort in my mom’s presence for many days after September 24, 1994, the day his wife died in her sleep: her handbag draped over the handle of the kitchen door; her reading glasses placed all through the house where she might have ended up needing them; the unfinished grocery list for items she anticipated purchasing later that week; the laundry basket containing clothes she removed from her body in the days preceding her death, not knowing that a few days hence, she would not be the one to launder them. I admit to hugging the bedsheets that had been removed from my mother’s bed the morning after her death. I buried my face in them, inhaling that which remained of my mother, as these were bedsheets on which her last breaths were taken.
(Photo credit: Wikipedia)
When my father died thirteen years later, I collected some of his personal items that spoke to me: the crucifix that hung above his bed; the magnifying glass that he needed to read newspaper articles prior to losing his reading ability due to the insidious disease of Alzheimer’s; his favorite shirt – or was it mine? – that helped me to readily pick him out amongst the other residents in the crowded dementia unit dining room; and his worn out wallet containing items that even in the depths of his dementia, gave him a sense of importance and identity.
We all know that tactile items themselves don’t bring our loved ones closer to us. But these items act as surrogates for those who have passed, more or less serving as the catalyst that uncovers what matters to us most: the essence of the cherished being, and the memories that are not easily discarded.
A recent NBC Nightly News story focused on the role of caregiving as adult children take on the parental role vacated by their parents.
Imagine, if you can, handling all that you normally do in your hectic life and adding between 20 to 60 more hours to your workload. Haven’t arrived at that point yet? Of this potentiality you can be certain – all signs point to that being in your future. Whether your involvement is characterized by general care for an aging family member, or specialized care for a family member with cognitive decline, caregiving is most likely a task to which you have not devoted much attention.
It is said that 1,200 people per day are diagnosed with Alzheimer’s or other dementia. Let’s re-categorize that statistic: 1,200 caregivers are created every day.
The new ad campaign, a joint project between AARP and the Ad Council, was created to address the impact of family caregiving with the graying of the population. This ad campaign seeks to provide resources for those who are thrust into this role for which they are ill-prepared.
“Although they often don’t identify themselves as ‘caregivers,’ more than 42 million Americans perform some form of consistent care for older or impaired adult relatives or friends, according to a 2009 estimate. It can range from paying bills, to driving Mom to doctor appointments, to more hands-on care such as bathing, and even tasks once left to nurses such as the care of open wounds.”
Taking a walk with my wonderful Dad in 2007.
And as many of us who have been in that caregiving role can attest, ones’ active role goes on and on when behind-the-scenes caregiving occurs, dealing with finance and insurance issues and the like during our alleged “free” time; a time when others are settling down to watch their favorite TV show or to read a good book.
This extraordinary AARP/Ad Council project is broader than another effort that is part of the new National Alzheimer’s Plan that can be found on the federal government’s website, www.alzheimers.gov. But both of these projects address the loneliness inherent with the caregiving task when so many caregivers feel, and become, isolated and adrift in an ocean of frustration and despair.
FINALLY some resources are being directed to the tidal wave of caregiving issues that Baby Boomers face. It may be too little too late, but it’s more than has been available up to this point. My hope is that the generation in which our children live will have sufficient resources to deal with us Baby Boomers because if our children think this caregiving task is going to jump their generation, they’ve got another thing coming to them.
And I apologize ahead of time for what awaits you.
Why? Because at least 150 people attended my sister-in-law’s memorial service, held after she passed from complications associated with Alzheimer’s disease.
I know that the count of 150 is nothing compared to a stadium full of football, baseball, or soccer fans. But this 150 people showed up on Monday, the beginning of most people’s work-week, to honor my brother and his stepchildren, and memorialize a woman who impacted their world greatly.
How the day unfolded. Individual after individual arrived: some driving south from British Columbia, Canada, one person even flying in from Toronto, Canada, and numerous people driving north from California and Oregon state. At first it looked like those who set up the venue with numerous chairs had overcompensated in their attendance projections. That was not to be the case. By 2 pm, the scheduled start of the memorial service, additional chairs had to be set up. By 2:15 pm, some of us, most notably my brother, were sweating – not just because it was very hot on that particular Seattle, Washington day, but because the Officiant for the service had not arrived – and never did. But that’s not important.
Time for Plan B. I joined my brother outside just after 2 pm and I suggested that since the Officiant had not yet arrived, it was probably time to figure out Plan B. All the immediate family members sprung into action and the parts that would have been attended to by the Officiant were superbly handled by other family members. Even my brother – who had NOT planned on saying a word during the structured part of the service – walked to the front of the room and spoke beautifully about his wife’s journey to finally reach “home.”
Home is not just a structure with four walls. Quite a few times during my sister-in-law’s illness, she told my brother that she just wanted to go home. Now for those who aren’t familiar with Alzheimer’s or other dementia, oftentimes “home” means comfort, freedom, peace. That was the case with my brother’s spouse. She died on the American holiday, July 4th, also known as Independence Day. That day was her Independence Day, when she could finally flee to comfort, freedom, and peace, with a body – and mind – untethered by any restrictions.
Many blessings to my sister-in-law, my wonderful brother/spouse caregiver, Don, and all of the surviving family members. Monday, August 13th was truly a Celebration of Life and Liberty.
This is such disappointing news to the Alzheimer’s community which at its heart includes those suffering with the disease and the family caregivers suffering right along with them.
As someone who in the past has been personally involved with this disease as a caregiver for my father, I have experienced elation at the start of new drug trials – and defeat when those trials failed. This disease just seems to be one that evades all goodhearted and extensive attempts to slow down the disease.
A cure? That doesn’t even seem to be on any horizon I’ll see before the end of my days. But this insidious disease can’t even be slowed down, for heaven’s sake, so that the patient and all of his/her family can enjoy a better, longer, and less-impaired life.
The article above reflects what is offered by Pauline Boss in her book Ambiguous Loss. I highly recommend the above Alzheimer’s Reading Room article as well as Ms. Boss’s book for any spouse who is taking care of their wife/husband at home or if your spouse is already living in a dementia care unit.
The author, Pauline Boss, explains it this way: when a loved one dies, we mourn the loss; we take comfort in the rituals that mark the passing, and we turn to those around us for support. That doesn’t happen when a loved one is still alive, but the losing occurs nonetheless. And this period of loss may go on for years prior to the spouse’s final departure through death.
One of the statements that Ms. Boss introduces is that “it is o.k. to love a shell.” Anyone who is married to someone with dementia knows that, in essence, a shell is what their spouse becomes with advanced dementia. But if the “surviving spouse” is able to draw on the memories of their marriage, they find themselves able to love their spouse regardless of the disease. Unfortunately, the memories remembered are no longer shared memories; joint reminiscing no longer occurs. Your wedding anniversary passes without any acknowledgement by your spouse, and although that’s just one of the burdens during this long period of loss, it’s a difficult one to bear.
Caregiving is a difficult, 24/7 task. I honor you on your journey, and I hope you find comfort and direction in the above resources, as well as the resources that the Alzheimer’s Association provides.
A fellow Blogger, Frangipani Singaporenicum, submitted an excellent article, “Mom is Back,” about the hurdles experienced when her mother traveled by airplane back home after a visit with one of her daughters. Frangipani’s siblings weren’t fully aware of the breadth of their mother’s disease so they thought that the mother would be in good hands at the airport because they had arranged for an airport escort to get the mother to her airplane destination.
Unfortunately, what could go wrong did go wrong. “Frangipani’s” mother has mixed dementia, Alzheimer’s and vascular dementia, and found herself in unfamiliar surroundings when she became separated from the airport employee – a stranger in the mother’s eyes – who was supposed to assist her. Getting lost in an unfamiliar environment is something that comes quite naturally to those with any type of dementia. And as often happens when a person is lost, we try to get un-lost. That attempt brought her mother to another airline terminal where a kind gentleman, noticing her distress, found the assistance she needed to get on the correct plane at the right time.
Those of us who have children – and please bear with me while I make this comparison – know how easily a child can wander away from our purview. We make a quarter turn at the grocery store to get a box of cereal off the top shelf and “POOF!” our child is nowhere to be found. I’m very familiar with this feeling because it happened to me many years ago when my adventurous daughter wandered away – causing me near cardiac arrest – and was subsequently prevented from exiting the grocery store by a Good Samaritan grandmother who knew better than to let my daughter run out into the parking lot. “But I only turned away for a second!” That’s all it takes.
So too can a person with dementia wander away because of something that attracted him; or more likely, with your back to him, he didn’t recognize you any more and walked away to try to find you. “But how can I keep my eye on him at all times?” You just have to.
SOME TIPS OF THE TRADE.
(Photo credit: Wikipedia)
Public restroom challenges. If you or your loved one needs to use the bathroom, find one of the family bathrooms that now exist in many public places so that your environment is controlled, and everyone’s needs are met. Don’t think for a second that you can say to your husband, “George, you stay here while I run into the ladies’ room. I’ll just be a minute.” Be prepared to call security when you come out of the ladies’ restroom because in George’s mind, you disappeared, and the time frame of a minute means absolutely nothing to him. And forget about sending your husband into the mens’ room by himself to meet his potty needs. You’ll be waiting, and waiting, and waiting, and he just a) may not do his business; and b) may not come out on his own. If no family bathrooms are available, stand at the entrance to the public restroom and announce yourself: “Woman entering with husband who needs assistance!” You’ll find that those within will cover up what needs covering and not call security on you.
Medic Alert (Photo credit: Nikita Kashner)
Medic-Alert jewelry. The Alzheimer’s Association strongly recommends purchasing a Medic-Alert/Safe Return device which provides 24/7 emergency response service. At least if your loved one gets lost, they will be reunited with you sooner. This service is available in 50 countries, and in 140 languages. The service speaks for itself so please check the link attached to research the many benefits of this membership service that, quite frankly, brings priceless peace of mind and provides a healthy dose of safety for your loved one.
Now they see you – now they don’t. The examples cited above would not be complete if I didn’t add a personal experience from my days of being my father’s primary long-distance caregiver. My dad lived in a Continuing Care Retirement Community (CCRC) in Southern Oregon. When first diagnosed with Alzheimer’s he was very functional and remained in the assisted living apartment on campus that he had shared with his wife prior to her death in January 2007.
I stayed at a nearby hotel when I visited my father but spent most of the day with him on outings and/or spending time with him in his one-bedroom, one-bathroom apartment. At one point during an apartment visit, I announced to him that I was slipping into the bathroom, 10-feet away, and would be just a minute or two.
I was glad to have locked the bathroom door because partway during my “sit” dad was frantically jiggling the doorknob from the bedroom side of the door shouting, “Irene! Where are you?! Are you o.k.? What’s going on?!!” I was less understanding at the time and returned my own crazed shout of “Dad!!! Leave me be! I’m just going to the bathroom!!!” Knowing what I know now, I would have exited the bathroom and apologized for frightening him, and made every attempt to make him feel safe again. As Oprah Winfrey often says, “We do better when we know better.”
This unintended “peek-a-boo” event proved to me that my father did not have an understanding of the passing of time, but more importantly, that if he couldn’t see me, I wasn’t there. Back to the example of children, but this time, you’re the child.
You’re at play in your bedroom, having just left your mommy gleefully singing in the kitchen while she did the dishes. Your dolls are lined up on your bed, you’re engaging them in discussion, and all of a sudden you notice that mommy isn’t singing any more. You toddle out to the kitchen, and mommy isn’t where you left her!!! “Mommy! Where are you?! Mommy – I’m scared!!! Help me Mommy!!!!!” Your mother steps out of the adjoined laundry room and calms you down – “Irene, I was just five feet away; I didn’t go anywhere, I’m right here!” You run into your mommy’s arms and feel safe again.
Alzheimer’s and other dementia are very unpredictable diseases. What can be predicted, however, is that the onus will always rest on us to compensate for our loved one’s challenges. As I’ve mentioned in previous articles addressing dementia, we have the ability to adjust to the diseased person’s reality; not the other way around. It’s hard work for us, but it’s an impossible task for them.
The attached article reflects the sentiments of Bob DeMarco, a son who took care of his mother Dotty for over 8 years during a difficult Alzheimer’s journey. He rarely complained – which is stellar, but not required – and now a few weeks after her death, he’s falling back on the memories and finding joy amidst the grief.
The attached article provides a wonderful starting point for those caregivers who know that the outcome of their loved one’s Alzheimer’s or other dementia is a certainty.
Preparation is key. We can never be fully prepared for the time when our loved one dies, but we would be wise to make some sort of plan while we’re months away from grief’s impact. I’m not talking about the legal planning that, hopefully, is already in place. I’m referring to the day-of-impact planning that will carry you through one of the most difficult times of your caregiving journey.
DEATH – not everyone is comfortable discussing this topic even though it is as certain as, well, death and taxes. Death to many is a taboo subject and dealing with its aftermath, a foreign concept. It stands to reason, therefore, that during your time of grief, some of your acquaintances may blunder their way through trying to help you. Use discernment in setting up your Emotional Support Team and PracticalSupport Team.
EMOTIONAL SUPPORT TEAM. You know the acquaintances upon which you’ve always been able to rely, so place them at the top of your plan’s contact list. These are people with whom you’ve shared all the personal intricacies of your life; they understand how you tick, and can oftentimes predict what you’ll need before you even know you need it.
PRACTICAL SUPPORT TEAM. These acquaintances fill in the gaps that will no doubt be made as you’re dealing with the “business” of dying. Some examples of tasks they may perform: picking up the grandkids from school; providing light housekeeping; picking up the dry cleaning; running to the post office for you. The list is endless but chances are you have a few friends who would relish the opportunity to help out in this way. They may not be strong in providing emotional support but excel at the “doing” type of support.
Grief is personal and there’s no set period of time that it’s supposed to last. Just as every person in this world is different from everyone else, grief is intimately personal for those going through it. If outside help in the form of grief support groups is available, look into churches, hospitals, hospice centers and the like who offer such groups. Have their number handy and don’t hesitate to call them. For the most part, you know what might help you most, but if you find yourself floundering and unable to function, do yourself a favor and accept the support that your dedicated friends offer. There’s no shame in doing so. Who knows, you may be providing that same support to them some day. What a wonderful way to return the favor.
How in the world did I get lost driving to the supermarket – a route I drive at least once a week!
My words are getting all jumbled up and my sentences aren’t making sense.
What’s happening to me?
Are you one of the many people who started to take a medication to resolve a condition, or at least to make it better, only to end up with distressing – and life-changing – mild cognitive impairment?
How long did it take for you and your doctor to realize that this horrific change of condition was caused by a medication that was added to your health regimen?
What types of expensive, and grueling, tests did you go through prior to coming to that conclusion? Did any of you go through neurological testing?
And how long did it take for you to feel “normal” again once you took your doctor’s advice to either go off the medication or replace it with a medication that did not cause cognitive decline?
I am personally aware of several people who experienced cognitive decline after taking the Pfizer drug, Lyrica (pregabalin). This drug was originally intended for treatment of neuropathic pain and as an anti-seizure medication, but was approved for treatment of fibromyalgia in 2007. Additionally, cholesterol-lowering statin medications oftentimes cause the same cognitive outcomes. And with the Pfizer drug Lyrica, increased depression – even suicide or newly diagnosed depression – were directly linked to this drug.
As Baby Boomers, we’re entering a phase where, depending upon what ails us, we start adding prescription medications to our health regimen in an attempt to have a high degree of health and well-being.
We need to be completely aware of how a medication may affect us, but it’s unfortunate that most of our awareness is dependent upon the Patient Information Sheet provided by the pharmaceutical companies. These information sheets are sketchy, at best, and carry only half-truths, at worse.
Do you have similar experiences you can share? We’d like to hear from you because awareness, and education, will help us all.
In a NY Times piece, Testing a Drug that may stop Alzheimer’s Before it Starts, it was announced that a drug, Crenezumab, is set to be tested early next year on families who carry the single genetic mutation for Alzheimer’s – people who are genetically guaranteed to suffer from the disease years from now but who do not yet have any symptoms. Most of the 300 participants for this study will come from one extended family of 5,000 members in Medellin, Columbia who have been horrifically affected by this disease throughout their extended family.
This Colombian family’s story is presented in an astonishing video within the article’s link above. For decades, these family members started showing Alzheimer’s symptoms in their mid-40’s and the progression was so rapid that they advanced to full-blown dementia by the age of 51. The effects on a society, and a family’s dynamics, is eye opening to say the least. Let’s face it, in this video when a Colombian pre-teen is shown feeding his father, the role reversal is unmistakable.
The Study’s 300 family member participants will be years away from developing symptoms – with some being treated as young as 30 years old – but the hope is that if this drug forestalls memory or cognitive problems, plaque formation, and other brain deterioration, scientists will have discovered that delay or prevention is possible.
This drug trial has a long road ahead of it, but the study will be one of only a very few ever conducted to test prevention treatments for any genetically predestined disease. In an Alzheimer’s world where very little good news is forthcoming, it’s nice to see even a slight glimmer of hope.
The article attached above is from a blog diary kept by Dotty’s son, Bob DeMarco, from the inception of Dotty’s diagnosis of Alzheimer’s to the end, which is very near almost nine years later.
My Dad and I on a picnic, Spring 2005.
Dementia care is a very high station in life. That’s what Bob DeMarco believes, and so do I. Dementia caregiving is one of the most difficult challenges anyone can face and not everyone excels at that task. Bob has indeed excelled and there are many of you for which the same can be said. I sincerely believe if you can get through that journey, you can handle just about anything life can throw at you. My caregiving journey with my father ended in 2007, so I am speaking from experience, not just with an educated opinion.
Is Alzheimer’s an automatic death sentence? Many in the medical community, including the Alzheimer’s Association, will declare that indeed it is a death sentence. I think one of the reasons why so many believe that to be the case is that at this point, there is no cure. There are no thoroughly effective medications or treatments that cure it or stop it in its tracks. A person gets an infection? A regimen of antibiotics is prescribed and poof – the infection goes away. Someone is diagnosed with a particular cancer – a treatment regimen is prescribed and as a result many cancer patients become former cancer patients. Not so with Alzheimer’s or other dementia.
There’s no such thing as a “former Alzheimer’s patient.” At this point, the only former Alzheimer’s patients are those who have passed on. If I interpret correctly what Bob DeMarco said in the above attached article I think he may be saying that if you start your Alzheimer’s/dementia journey convinced that the disease is a death sentence,those involved, especially the caregiver, might not work nearly hard enough to make the patient’s remaining life one that can be called a dignified, quality life.
“Surviving” a disease takes on an entirely new meaning. It sounds as though Bob set out to make sure that his mother, Dotty, had a quality of life that she was able to live for an extended period of time. For that reason he can confidently say the following: “We did survive. We are survivors.”
Well done Bob and Dotty. You are beautiful examples of how to be a survivor when the odds are stacked up against you.
It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge. A dementia diagnosis is SO difficult for everyone – including the one with the disease. I think this article is very well done and provides a perspective of which many need to be aware. Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away. Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.
A very moving story in the New York Times, When Illness makes a Spouse a Stranger, provides a moving testament, contained in an article and a video, of the commitment required when a spouse becomes a stranger.
When Michael French was diagnosed with frontotemporal dementia, his wife Ruth was told that the best way to describe this type of dementia is that the brain atrophies. This dementia is not like Alzheimer’s, the most common form of dementia. Frontotemporal dementia strikes younger people and progresses much faster than other dementia.
How does one continue to have a relationship with someone who has become a complete stranger, especially one’s spouse? Ruth says that what is left in their relationship is love – that’s all – and that’s enough for her right now.
This story, and the accompanying video, are very moving and somewhat intense, but very much worth viewing.
It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips. Please take the time to listen to this person’s voice.
Thank you “Let’s Talk About Family” fellow-blogger for nominating me for the Versatile Blogger Award. That’s the kind of feedback I like! More importantly, everyone should check out her Blog because her insights into the ups, and downs, of caring for parents is very insightful and well worth following.
I have been so blessed by the input I receive from the many Blogs that I follow. I’m going to use this opportunity to make some nominations as well! (I could list many, many more, but to begin with at least, I’ll list just a few that always stand out to me.) First of all the steps that the nominees need to take to award others who are worthy of singling out:
Thank the person who nominated you for an award;
Copy & paste the award logos in your blog, as well as in the sections devoted to your nominations, below;
Be certain to link the person who nominated you for an award; in my case, you’ll see that I’ve linked “Let’s Talk About Family” when I thanked her for nominating me;
Nominate your own choices for awards;
Place links to their Blogsites so that others can view their fine work;
Say a few things about yourself so that others understand a bit more as to where you’re coming from – and where you’re going:
My first name is Irene and I live in the Seattle, Washington area.
I’m a Baby Boomer who loves to share knowledge about the challenges, and delights, of being in this age group.
My working background of the past 20 years includes being a paralegal in law firms as well as for corporations; an Executive Assistant and Office Manager for a senior housing company; a Business Manager in an assisted living/dementia care facility; an Alzheimer’s Association caregiver support group facilitator; and a certified long-term care (LTC) ombudsman for the county in which I live.
I became a LTC ombudsman in 2008, thereby leaving the senior housing industry, because in my mind one can never do enough for the vulnerable adults who live in long-term care residential facilities. In order to assure that vulnerable residents experience a dignified existence and a high quality of life, I had to switch sides and become their advocate.
I will always try to write something about which I am familiar and that I have also experienced. I’m not an expert, but my goal is to always provide input that I hope will prove valuable to others.
My mother died in 1994 and from 2004 thru 2007 I was the primary long-distance caregiver for my father who lived in an assisted living community’s dementia care unit.
Now onto the award nominations!
Versatile Blogger Awards:
Day by Day with the Big Terrible A (Alzheimer’s, of course.) This blog is very reader-friendly. This blogger is a wife who is taking care of her husband. Her mini-entries very clearly reflect the struggles she, her husband, and her family face but she also makes room to celebrate the little victories that sometimes are hidden within the caregiving struggle. I think all of us can find comfort in this woman’s efforts, and her ability to describe those efforts deserve 5 Stars!!!
My Simple C.com. This blog is an online community that seeks to connect professional caregivers with family caregivers. The resources and suggestions are quite good and are provided without the intent of selling anything. Virginia Lynn Rudder works for a company called Simple C, but she clearly has a goal of providing information in an easy to read, comprehensive, and supportive manner.
Elder Advocates. Lark E. Kirkwood experienced something that no one should ever have to experience. A guardianship was put in place limiting access to her father who was suffering from Alzheimer’s disease, and who has subsequently passed on. Please visit her site because she provides many valuable resources relating to a prevailing problem for vulnerable adults: elder abuse & fraud.
BEAUTIFUL BLOGGER AWARD.
Flickr Comments by FrizzText. This Blogger really knows how to take a photo and knows how to find them so that we can take a break in our very busy days and simply enjoy his view on our world. Please make a point of stopping by and you’ll be representing one of the more than 100 countries that partake of his Blog site.
No test for Alzheimer’s disease is fool proof and I would venture to say that ALL tests of this nature aren’t black & white. There are many gray areas when attempting to discern the presence of Alzheimer’s or other dementia in its earlier stages but as is often said, knowledge is power and certainly some information and guidance is better than none. I hope the article linked here will prove helpful to you.
You’ve worked your entire life; you’ve lined up your retirement leisure activities; you’re ready to start the first day of the rest of your life, but instead you start a new job: caregiver to your sibling, spouse, parent, or other family member.
Or perhaps you retired early to take on your caregiver job because there was no way you could do it all: continue your full-time job while moonlighting as your loved one’s caregiver. It doesn’t work or it only works until the caregiver runs out of steam. One way or another, your retirement years sure don’t resemble what you envisioned.
The CNN article, As baby boomers retire, a focus on caregivers, paints a frightening picture but one that is painfully accurate. The highlighted caregiver, Felicia Hudson, said she takes comfort in the following sentiment:
Circumstances do not cause anger, nervousness, worry or depression; it is how we handle situations that allow these adverse moods.
I agree with the above sentiment to a very small degree because let’s face it, the nitty-gritty of a caregiver’s life is filled with anger-inducing depressive circumstances about which I don’t think caregivers should beat themselves up trying to handle with a happy face and a positive attitude. It just doesn’t work that well in the long-term. It’s a well-known fact, and one that is always talked about by the Alzheimer’s Association, that caregivers don’t take care of themselves because they don’t know how, or don’t have the support, to stop trying to do all of their life’s jobs by themselves.
“I’m obligated because my parents took great care of me, and now it’s time for me to take care of them.”
or
“For better or worse means taking care of my spouse, even though she’s getting the better of me, and I’m getting worse and worse.”
The problem with the above sentiments is that oftentimes the adult child or spouse start to resent the person for whom they are providing care. It’s like going to a job you hate but being held to an unbreakable employment contract; your employer is a loved one with a life-altering or terminal illness; and you’re not getting paid. “Taking care of a loved one in need is reward enough.” No, it’s not.
I’m not bitter, I’m simply realistic. Caregiving is one of the most difficult jobs any of us will hold and we can’t do it all by ourselves. My blog article, Caregiving: The Ultimate Team Sport, encourages each person in a family caregiving situation to create a team of co-caregivers to more effectively get the job done. And please take a look at the other articles found in that same category of Caregiving. I hope you will find encouragement in those articles – some based on my own experience, and some from other caregivers’ shared experiences – especially when a positive attitude and a happy face just isn’t working for you.
This post, from a wonderful Blog about caregiving, http://www.letstalkaboutfamily.wordpress.com provides an excellent idea. It’s never too late to start this project for a loved one with Alzheimer’s or other dementia.
Most people don’t want to talk about end-of-life issues but all of us know it’s a topic requiring early discussion and appropriate timing to be of any use when emotional, and sometimes emergent, decisions must be made.
Image via Wikipedia of a patient for whom Dr. Alzheimer provided care. This patient became the model for diagnosing Alzheimer's dementia.
My siblings and I benefited from my parents’ end-of-life documents that dictated their wishes should we need to become involved. My mother died in her sleep in 1994 so no active involvement was necessary but my father, suffering with Alzheimer’s for five years by the time he died in 2007, gave us a gift by spelling out in detail his end-of-life wishes set in place at least a decade before he died. Think of an Advanced Directive or Living Will as a gift to your loved ones. It certainly was a gift to my siblings and me.
An organization in Washington state, Compassion & Choices, worked with Seattle University Clinical Law Professor, Lisa Brodoff, to create a new advance directive for people with Alzheimer’s and other dementia. This same law professor was instrumental in the passage of legislation in Washington State creating the Mental Health Advance Directive for people with mental illness. This statute is considered to be model legislation for other states wanting to expand the rights and planning options for people with mental illness. Bravo Washington State!!!
Although not yet available, the new Alzheimer’s/Dementia Advance Directive will be based on one created by Professor Brodoff for a 2009 Elder Law Journal article titled (excerpt attached): Planning for Alzheimer’s Disease with Mental Health Directives. The new Alzheimer’s/Dementia advance directive is not intended to replace existing end-of-life documents such as a Living Will and/or Durable Power of Attorney for Health Care, but is designed to work in concert with those documents to ensure that any issues important to the patient with dementia that are not addressed in standard advance directives are honored as much as possible.
What additional issues are addressed in the new advance directive for those with Alzheimer’s or other dementia?
Potential issues that might be addressed are preferences regarding:
care in and outside of the home;
financing of said care;
caregiver choices;
involuntary commitment;
consent to participation in drug trials;
suspension of driving privileges; and
any future intimate relationships.
To get on the mailing list in Washington state to receive a copy of the new advance directive contact Compassion Washington: by email, info@CompassionWA.org or by calling their office at: 206.256.1636 or Toll free: 1-877-222-2816. At the very least, regardless of where you live, using their model as a guide when creating your own Advance Directive may be helpful when such Directive affects the life of a loved one with dementia. Being prepared for the unexpected, or even what you indeed suspect might be a future health issue, provide peace of mind for the patient and for his or her caregiver.
You are not destined for Alcatraz just because of a little well-placed dishonesty.
If you are primarily responsible for a loved one with Alzheimer’s or other dementia, or perhaps you assist an elderly relative who relies on you for help, do you find yourself telling little white lies? Do you stretch the truth a bit in order to keep the peace? Without doing any harm to your loved one or anyone else, do those little white lies help you accomplish tasks on behalf of your loved one, thus improving their life? Congratulations – you understand that honesty isn’t always the best route to take and you’re in good company.
How do you jump over the hurdles of negotiating with a loved one for whom you provide care? Here are a few examples that come to mind.
Scenario one: the need to get creative in order to leave the house for personal business. For example, if telling your wife that you’re going to a caregiver support group meeting makes her mad, sad, or distrustful of your intentions, (“I’m sure you’re going to say bad things about me!”), why not tell your spouse that you’re going out with the guys, and you promise you will be back in two hours. Then make sure you’re back on time! If you’re not comfortable with that lie, by all means, every month you can continue to explain how helpful this caregiver support group is to you and how much it helps you be a better husband; and month after month your wife will not understand your rationale and will feel ashamed. Knowing that you’re going to a support group only confirms how miserable she’s made your life. Read the rest of this entry »
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
One of many walks my father and I took around his facility
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Themtake a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
In the article linked above, Bill Newcott discusses how he hunkered down and tried to fix what ailed his wife. The first paragraph of the article will grab you:
Or perhaps you retired early to take on your caregiver job because there was no way you could do it all: continue your full-time job while moonlighting as your loved one’s caregiver. It doesn’t work or it only works until the caregiver runs out of steam. One way or another, your retirement years sure don’t resemble what you envisioned.
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
Living: the ultimate team sport 