Caregiving
Caregiving and the Challenges of Travel
Caregiving and the Challenges of Travel: It Can be Stressful for Both of You.
Read the above article if you’re not convinced that traveling with a loved one who has dementia can be challenging. Or read it if you too have experienced this particular type of stress because you have already ventured into the travel hell that this Blogger describes. I make that statement with no disrespect intended. It doesn’t matter how much you love your co-traveler, it doesn’t matter how wonderful your destination – getting there is not without its mishaps and aggravations for both the caregiver, and the cognitively impaired traveler.
Then there is the other side of the coin: imagine that you are a person with mid-stage Alzheimer’s or other dementia who is not accustomed to staying put – you actually wander constantly when you’re on the ground – and you’ve been put on an airplane by yourself and you have no concept of what is taking place. You don’t have the capacity to understand that this metal tube in which you are sitting is a confined space and trying to “get home” is not an option. If you can’t imagine that scenario read the attached article, Alzheimer’s “exit-seeking” behavior at 35,000 feet, an article I wrote shortly after returning from Bar Harbor, Maine in October 2012.
The first Valentine’s Day without your loved one.
The above article recounts the personal feelings of a blogger who experienced his first Valentine’s Day without his wife who died on July 4, 2012. For those of us not experiencing such a loss, we may too readily try to point out that this “holiday” is just a Hallmark greeting card day, or florists and chocolate manufactures making lots of money day. It’s more than that – especially when so many memories are tied to the event. Whenever a “first time without” comes around on the calendar, the dread leading up to that date can be very troublesome, as it was for this blogger.
I recently watched a show in which interior designer, Nate Berkus, said the following about the things we have in our lives:
The truth is – that things matter. They have to because they’re what we live with and touch each and every day.
They represent what we’ve seen, who we’ve loved, and where we hope to go next.
They remind us of the good times and the rough patches and everything in between that’s made us who we are.
Events, celebrations, and the like provide the same type of life-shaping experiences. That’s why today is far more than a commercial and financial windfall for the greeting card, floral, and chocolate industries. Without someone with whom to celebrate the focus of this day, it becomes a non-day from which you can not escape. Thank God for the memories, the photos, even the many things around the house that represent the touch and essence of our Valentine.
Conversating with those who have dementia.
Recent Conversation with Mom (Asking about my Mom).
The article above, written by blogger Richard Kenny, illustrates his ability to adapt to his mother’s dementia – especially when doing so involves carrying on a conversation with her. I love how Richard has figured out how to get around the frustrations that can exist when “normal” and meaningful conversations are few and far between – and nonsensical ones become the norm.
Going with the flow is the rule of the day, the month, and the year, if you want to avoid stressing out when trying to converse with someone who is not able to enter your reality. The Alzheimer’s Association encourages this mantra: “If you don’t insist, they can’t resist.” Go with it – and you just might enjoy yourself!
I interrupt your life for this brief message.
When was the last time you just soaked it all in? I’m not talking about soaking in the sun’s rays – hard to find in most places at this time of year anyway. And I’m not referring to settling your weary body down into a relaxing hot bath.
How about today, you decide to soak in all the good that is in your life?
But you say, “I have no time for that because the bad in my life far outweighs the good.” My response to that? Perhaps you need to even out the scales.
Right now, make a concerted effort to write down three things for which you can be grateful; things that encourage a smile on your face; things that make you forget – even for a second – all that weighs you down.
Now celebrate those three things by soaking in the feather light feeling they create. If that sensation is something you’d like to feel again, well – you’re in charge. Set aside time each day to allow the good to displace some of the bad.
If you celebrate even the smallest of good aspects of your life, you may discover that countless mini-parties await you. What have you got to lose?
A Touch of Completion
A very brief blog entry from a fellow blogger. Some of you on your caregiving journey – or those who have recently ended that journey – will understand what is being said here.
Sometimes You Just Have to Laugh!
Sometimes You Just Have to Laugh!.
I think you’ll all agree that humor can be found in almost every situation in which we find ourselves. Even the distressing disease of dementia has its lighter moments. The article above, by fellow blogger Don Desonier, provides a moment he had with his wonderful wife Nancy. I think many of you will be able to visualize the scenario that this writer so adeptly describes.
Here’s a humorous story from my caregiving time with my father who died from Alzheimer’s complications in October 2007. On one of my visits to his assisted living facility in Oregon, he asked me to help him change his hearing aid batteries. So happy to have something to do that would benefit my father, I jumped at the opportunity to help him hear better – thereby greatly enhancing our conversational abilities.
He pulled out his hearing aids and I pulled the dead batteries out and placed them on the coffee table. I turned my back for a couple seconds and upon refocusing my attention, I saw that my father had put a dozen other batteries on the coffee table – MIXED IN with the two that no longer worked. Had my father not put all the batteries in a pile I might have been able to readily discern the two recently removed batteries. As it was, it took us forty-five minutes to test the batteries and as luck would have it, the used-up batteries were the last two we tested.
At least I got a laugh out of it – after the initial frustration – and dad seemed to get a kick out of the fact that I was giggling about the process. And now more than five years later – I can still reflect on that experience with a smile on my face.
Dementia Transformation
The article above is from one of my favorite bloggers, Frangipani Singaporenicum. Her journey as a caregiver involves her mother. Her storytelling of what that involves is really quite genius.
This article addresses the question as to whether or not the person with dementia is the same person they were prior to onset of disease; and if they are not …
then who are they?
Once you’ve read her article I believe you’ll have a clearer perception of what dementia takes away – and leaves behind – during the progression of the disease.
Don’t Go It Alone! The Importance of Caregiver Support
Don’t Go It Alone! The Importance of Caregiver Support.
The article above by a fellow blogger who recently lost his wife due to complications of dementia, echos my sentiments about the need to invite others to join you on your caregiving journey. Walking the path alone is not only inadvisable, but in most instances, it’s impossible. With so many unknowns waiting around the corner, every caregiver needs to enlist the help of those who can effectively support him or her, and as a result, provide much needed assistance to the one being cared for.
I’m a firm believer of team support, as I stated in my article: Caregiving: The Ultimate Team Sport. Another article, Solo Caregiving, provides encouraging ways in which to recruit team members when there are no family members on which to rely.
Taking care of yourself is not selfish. Developing a team of caregiver-helpers goes a long way towards taking care of numero uno – YOU!
Getting caught in the crossfire of someone’s bad day.
Know Someone Dealing With a Loved One With Dementia? Think on These Words.
I’ve attached, above, a link to a fellow blogger’s site. The message is short and instructional.
What resonated with me about the statement provided in the link, is that each of us has experienced the after effects of walking in the midst of someone’s bad day and we inadvertently become the recipient of that bad day’s vibes. And sometimes the shoe is on the other foot. It’s unavoidable. I guess that’s why the words of wisdom provided in the link, are words that we all need to take to heart.
The Challenge and Burden of Sharing Difficult News
The Challenge and Burden of Sharing Difficult News.
When I think about the subject of having to tell someone some bad news, I think of the conversation: “I’m not gonna tell them – YOU tell them!” “No, I’m not gonna tell them – YOU tell them!”
No one wants to be the harbinger of bad news – especially news that will change peoples’ lives forever. When friends and family need to hear the news that someone in the family has recently been diagnosed with Alzheimer’s or other dementia you wish it was as easy as the task you avoided at work – telling your cubical-mate that he has bad breath. Nope – when lives are at stake – and quality of life issues are at stake – the ballgame changes – certainly not for the better.
In the attached article above, you’ll read the story about a family who had to make the agonizing decision about who to tell about a wife’s early dementia diagnosis – and when to tell them of the news. What’s so beautiful about this husband’s telling of the story, is how much he took his wife’s feelings into account when determining the best conversational course to take. The route he and his adult stepchildren chose was not one of denial, such as can be the case in some instances, rather, they faced the reality of this cosmic shift in their lives, and did what worked best for them and for their loved one.
Each circumstance is different – and those involved need to make appropriate decisions that fit the dynamics of their particular situation. (It’s certainly not a one size fits all solution.) And let’s face it – when someone starts out on this caregiving journey – it’s definitely a matter of on-the-job training. In the above family – it appears to have been done quite well.
The Gift that Keeps on Giving – until it’s no longer needed.
Rev. Dale Susan Edmonds answers your questions about caregiving.
The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents. (My mother died in 1994, my father in 2007 – those conversations have long since taken place.) In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier. That’s just how it was in our household growing up. But I’m aware that universally, that is not the case.
In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die. By now I may have lost some of you, but bear with me. There’s a reason why I’ve chosen to address this topic.
GIFTS. Who doesn’t like receiving gifts? Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!” “What, for me?” Yes – for you. Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item. Fun, isn’t it? Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!
THE GIFT THAT KEEPS ON GIVING. A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive. My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death. I get that – I really do. So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.
When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended. I’ll use my father as an example. My father died at the age of 89 on October 13, 2007. Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death. There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying. His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes. Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation. His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.
The legal document, drafted years earlier, was drafted for this specific time. Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision. If ever there was a time when dad’s gift was ready to be presented – this was it. That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad. Beautiful.
You don’t have to wait until you are 50 years or older to put your wishes in print. Old people aren’t the only ones dying who require some sort of affirmative decision-making. Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death. A forty-year old person could have a stroke and be on that same precipice. It’s never too early to do something about your exit from this world as we know it. You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document. That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go! Literally.
If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself. Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory. Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision. Who woulda thunk? Not me.
The Holidays may be over, but the season of gift-giving is not. Won’t you consider giving your loved ones one more gift this year?
Transitions in Dementia Caregiving.
Welcome to Catching Up to the Disease: Transitions in Dementia Caregiving.
Attention one and all! There’s a new website out that will be addressing the challenges of being a caregiver. The author/owner of this website, Don Desonier, is coming from the perspective of someone who very recently lost his spouse as a result of dementia complications.
Don’s five-year journey as a caregiver provided him with heart-rending experiences from which he garnered exceptional insight and wisdom. I personally look forward to his article postings – so much so, that I became his first blog follower. At the very least – why don’t you check out the website and visit from time to time. I feel confident that you’ll walk away feeling renewed with the realization that you’re not alone, and somehow or another – there’s a way through this difficult journey that you’re on.
I commend this Blogger, and I love him. Don is my brother and he was an extraordinary caregiver to his wife of almost twenty-five years.
Living with Early-Onset Alzheimer’s disease.
In Washington State, there are currently 150,000 people diagnosed with Alzheimer’s Disease. In the rest of the Nation, more than 5 million have Alzheimer’s disease. That number will jump to 16 million by the year 2050. Most of us envision an elderly person with some sort of dementia. We might even expect it to occur in those 85 or older. Listen to me Baby Boomers – young and not-so-young – the number of people diagnosed before the age of 65 – known as early-onset Alzheimer’s – is more common than you think. In the United States alone, those with early-onset disease currently number 200,000.
That number decreased by one when my exceptional sister-in-law died on July 4, 2012 at the age of 69. Just about the time that Baby Boomers should be anxiously making their final retirement plans – such as was the case with my brother and his wife – they are instead dealing with the challenges of managing a disease for which there is no cure.
Sixty-four year old Lon Cole, a resident of Puyallup, Washington, is one of the 200,000. The local NBC affiliate, King5 in Seattle, Washington, ran a touching story about this gentleman. I hope you will take the time to look at this news article: Alive and Thankful: Living with early-onset Alzheimer’s. Those who have managed, or are currently managing, the care of a loved one with early-onset disease, will be touched by this family’s story.
Grief: The First Times Without.
Grief: The First Times Without.
In the article linked above, a fellow blogger provides an exquisite sampling of the types of circumstances some life journeyers may be going through resultant from losses that have placed them in a difficult transitionary time in their lives.
Chances are all of us will experience more than one of the transitions that Don frames in this article that so delicately – and movingly – touches on the topic of grief and loss that occur when “first” occasions without someone come around on the calendar.
May all of you receive the comfort you need during the “first” times on your grief journey.
The Journey of Grief: A Personal Snapshot
The Journey of Grief: A Personal Snapshot.
Grief – when one experiences a loss, there is no way around this emotion. It has no clearly defined end. It manifests itself differently for every individual. The writer of the above article shares the personal side of how this emotion presented itself in his own life in this continuation of his series of articles on grief.
This “personal snapshot” is a follow up to his first article in the series that addressed an event in ones life for which everyone’s grieving experience takes on a slightly different character. I hope you’ll read the article attached above, and his previous article – also available on his website.
Capturing a moment, or two, with your loved one.
The attached article, written by a fellow blogger, needs no introduction other than for me to tell you that Margo beautifully describes a perfect evening with her hubby who was diagnosed with Alzheimer’s several years ago.
Lighten up Mondays.
One evening, a family brought their frail, elderly mother to a nursing home and left her, knowing that after all the research they did to find a great place, she would be well cared for.
The next morning, the nurses bathed her, fed her a tasty breakfast of an omelet, sausages, and pancakes, and set her in a chair at a window overlooking a lovely flower garden.
She seemed okay, but after a while, she slowly started to lean over sideways in her chair. Two very attentive nurses immediately rushed to her side to catch her and straighten her up. Again, she seemed okay but after a while, she started to tilt to the other side. The nurses rushed back, and once more moved her upright. This went on all morning.
Later the family arrived to see how their mother was adjusting to her new home.
“So Ma, how is it here? Are they treating you alright?”
“It’s pretty nice here,” she replied, “except they won’t let me fart!”
Caregiving: Grief, Guilt, Exhaustion, and Discrimination.
Managing Caregiver Guilt, Grief and Exhaustion – AARP.
Sally Abrahms’ article linked above does a fantastic job of addressing some common emotions felt by the family caregiving community – those who provide free caregiving services to their loved ones. Let’s look at the three emotions she mentions and also look at the struggles many caregivers experience at their place of employment.
Grief. We grieve the loss of the person who is still with us. “When someone dies, it is an overwhelming and horrible experience, but it is the end of something,” says Suzanne Mintz, cofounder of the National Family Caregivers Association. “But with a caregiver, the grief is perpetual; it goes on and on and on.” Until you’ve experienced the ambiguous loss of your loved one, you can not say that you understand that particular type of grief. This ambiguous loss may result from a loved one’s dementia, debilitating disease, or other conditions that rob the patient of their physical or cognitive abilities. Ms. Mintz states that when one person receives a diagnosis, you both receive the diagnosis. You both experience the gradual loss of the life you once had and you know it won’t be coming back. That is a grief that keeps on giving because as time goes on, more and more of one’s previous abilities disappear right before your eyes.
Guilt. “I wish this would all be over so I can get my life back.” Oh my gosh, did I just say that? Many of you have felt that way and then struggled to rid yourself of the ensuing guilt. But guilt is constant – whether it manifests itself in believing that you are not doing enough for your loved one, not doing enough for your family, feeling negative towards the one receiving your care – it is constant. And it is normal. These negative feelings don’t make you a bad person. Rather, they are proof that you are a sensitive, aware and evolving being who hasn’t yet perfected the art of living.
Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on you and if not attended to early enough, they are killers. In my article, Caregiver: put on your oxygen mask first, I address the need to place yourself as more important than the person for whom you are providing care. “Gee, that’s pretty darn selfish!” Not at all. If you get what I’m talking about, you’ll agree that your loved one’s care is fully reliant on your ability to provide it. You can’t do so if you are on the brink of exhaustion, or worse, you die before your loved one, which is more common than you would like to think. You need a caregiving team. That team may consist of other family members and/or neighbors and acquaintances. You can’t do it all by yourself. If you’re a solo caregiver, check out the article, Solo Caregiving. This article provides tips on how to get the help that you need from those around you.
Discrimination. According to the recent report, Protecting Family Caregivers From Employment Discrimination, “roughly 42% of U.S. workers have provided unpaid elder care in the past five years” and that number is expected to rise to about 49% by the year 2017. With so many family caregivers out there, especially with the incidences of Alzheimer’s and other dementia on the rise, we all hope that employers will be more inclined to help their employees. But discrimination does occur in the workplace in the form of: limited schedule flexibility, denied leave or time off, and even dismissal from ones job.
The Family Medical Leave Act (FMLA) protects some caregivers but is an imperfect protection that is not required of employers with fewer than 50 employees. Additionally, of those employers required to adhere to FMLA guidelines, the employee must have been with their company for at least twelve months and have worked at least 1,250 hours during the previous year. With no FMLA protection, your job is at risk – especially in an economy when so many other workers would be glad to put in the hours that you’re not able to fulfill.
A word to employers. I know that it’s hard to maintain success while some employees just aren’t pulling their weight. But I think you’ll agree that some of you need to be more sensitive to the struggles experienced by your caregiver employees – employees who have never let you down prior to this difficult time in their lives. These exhausted souls can’t tread water fast enough – won’t you help them? Please do what you can to make reasonable accommodations that will lessen this temporary turn of events in your employees’ lives.
Be Nice.
The brief article, above, is one of admonishment and encouragement. Thank you my fellow blogger in Singapore for your extraordinary insight.
I think many of us can dredge up similar instances when someone responsible for the care of our loved ones dropped the ball. In my case, I flew down from Seattle, Washington to visit my father at a hospital in Oregon where he had been admitted because of a medical condition that had became acute in light of his Alzheimer’s disease.
I entered his room and saw him sitting up in his hospital bed, frantically rubbing his back on the stack of pillows behind him. “Dad, you look really uncomfortable. What’s going on?” “I don’t know,” he said, “but my back feels hot.” One look at my father’s back was enough to raise my blood pressure, and it takes a lot to do that since my BP is usually around 100/65. My father’s back was raw with welts. What he was feeling when he said that his back was hot was extreme itching.
I summoned a nurse – no small feat since it appeared that an old person with dementia in a hospital room was not as important as the other patients on the hospital floor. The nurse told me, “Oh, he must be experiencing an allergic reaction to the solution we used for his bath in bed. It’s the type of cleanser you don’t have to rinse off.” “Well, evidently, you do have to rinse it off! Look at the welts on my father’s back. He’s in misery! You have to get this dried soapy solution off him in order to relieve the itching!”
The nurse left the room, only to return a couple minutes later with a stack of washcloths. “Here, use these.” Then she walked out.
Left to my own devices, I drenched several of the washcloths in cold water, opened the back of my father’s hospital gown and proceeded to clean off, and cool off, his back. “Dad, this is going to feel real cold but it will make you feel better.” And it did. Ministering to my father in this way was a gift. I still wasn’t happy with the hospital staff, but I began to appreciate what turned out to be one of the final personal acts of caregiving for my father.
A month later I again flew down to Oregon, but this time, the cold washcloths I applied to my father were employed to bring down his temperature as he spent the last hours of his life in his assisted living bedroom dying. My father’s cancer – inoperable at that stage of his body’s vulnerability – had placed him in a stage of unconsciousness. As the staff alleviated the discomfort of his cancer with morphine, I lowered the fever brought about by the shutting down of his body’s organs.
A month earlier, what good would have come about if I had read the riot act to the nursing staff at the hospital? None whatsoever. Instead, I can be thankful for the gift of hands-on caregiving and comfort that I was able to provide my father while he was still alert and able to express his relief at having a cool, itch-free body.
I’m sad thinking about these incidents that occurred in the Fall of 2007, but I’m also delighted with having had the opportunity to minister so personally to my extraordinary father during the last weeks of his life.
Mom and her flying purse!
Mom and her flying purse! #EndALZ.
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.
New roommate paradigm: adult children & their parents.
Historically, it’s the adult children who move back into the parents’ home, oftentimes because of financial issues. Apparently that is no longer the sole definition of multi-generational living.
In a USA Today article, Who’s moving in? Adult kids, aging parents, Haya El Nasser writes, “(A)bout one in seven say they already have a ‘boomerang kid’ – an adult child who moves back home – or elderly parent living under their roof.”
This brings about two unexpected events:
- The parents who enjoyed their empty nest and started to reestablish themselves as a couple, instead of just as parents, suddenly have an adult living with them who just happens to be the kid they gave birth to 30 years ago; or
- The adult child who strove to establish his home with his spouse and their 2.5 kids suddenly have a parent living with them requiring just as much attention, if not more, than the young children they themselves brought into this world.
The USA Today article above focuses on a rising trend towards families deciding to purchase larger homes than they would have previously considered with the anticipation that it would be more economical to have other adult family members living in – and contributing to – the same household. Talk about a paradigm shift! Stephen Melman, director of economic services at the National Association of Home Builders says, “I remember when I was in college, no one wanted to be near their parents.” That thought certainly resonates with me. When I was single in my 20s and early 30s there was no such luxury of renting a place on my own and living-at-home was definitely not an option. At one time I had two roommates so all three of us shared the same bathroom, kitchen and common living space. Inconvenient and not as private as we would have liked? Certainly – but the only way to afford housing and have the ability to put away money for our future was to split costs with other like-minded adults.
A Pew Research report earlier this year showed that “the share of Americans living in multi-generational households is at its highest since the 1950s.” OMG! As a Baby Boomer who was born in 1953, I just have to repeat, “OMG!!!!!”
My focus today is on the caregiving issue – that adult children and/or Baby Boomers find themselves with the added responsibility as caregiver to a loved one. In my article Start your retirement – start your job as a family caregiver I address the caregiving aspect of Baby Boomer retirement which sometimes evolves into multi-generational living. Our quality of life definition tends to change as family caregiving is added to our lives. But it’s a fact of life for many of us and one that very few can escape. But herein lies the problem…
Most of us aren’t prepared for that eventuality. Those of us who are counting the days until retirement kid ourselves into believing that caregiving happens to others, not to us. And our adult children find it difficult to wrap their minds around that type of living scenario whilst in the midst of their hectic career development and ever-changing family dynamics.
So what happens? We find ourselves in an emergent situation that requires immediate action that may not be well-thought out because we don’t have the time to make a well-informed decision. We all know that the worse time to make a life-changing decision is in an emergency. There is a wealth of information available at our fingertips – the worldwide web is replete with helpful resources. Even this website has many articles written on the subject. As you browse through this website’s categories, be sure to enter a search term in the “Search My Site” box located at the right-hand side of each content page.
I’m not suggesting that you finalize plans that might not be implemented until many years down the road – or at all. What I am suggesting, however, is that we all become aware that a) these issues exist and could very well happen in our own lives; and b) we’re going to do what we can now to make wise decisions later.
When the Mind Says Goodbye – Alzheimer’s Reading Room.
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.
Treatment For Alzheimer’s Should Start Years Before Disease Sets In: NPR
Treatment For Alzheimer’s Should Start Years Before Disease Sets In: NPR.
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?
The Sunday Family Visit at an Assisted Living Facility.
Another Sunday Family Visit at the Assisted Living Facility.
This article, written by a fellow blogger, is beautifully descriptive and paints a clear picture – not just of the visual scene – but also of the emotions that exist in those who step into the world of their loved one with Alzheimer’s and other dementia.
The two poignant themes that resonate with me are: the development of resident boyfriend/girlfriend relationships within a memory care community; and the wonderful interaction between a great-grandson and his great-grandpa with cognitive difficulties.
I honor this blog author and her family for choosing to integrate a youngster into what could be a scary or challenging environment for a child. One of my articles, “Alzheimer’s Heartache: young family members adjusting to a grandparent or parent with dementia,” addresses the difficulties that families oftentimes experience in long-term care (LTC) settings. I can see that this family already figured out how to soften the hard edges to make the visiting experience beneficial to all.
I Can’t Win.
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.
Alzheimer’s “exit-seeking” behavior at 35,000 feet.
At a certain stage during the course of Alzheimer’s or other dementia, a person can exhibit exit-seeking behavior. It is believed that the person exhibiting this behavior is actually trying to get home, or back to a familiar place, or even seeking a feeling of comfort rather than simply trying to escape from their current location.
This “exiting” can take place just about anywhere, even at the person’s own home – resulting in a dangerous scenario where a wandering vulnerable person could easily fall into any number of horrific situations because of their inability to get back to the safety of their home (be it a personal residence or a long-term care facility.) Exiting behavior also takes place in public places such as grocery stores or shopping malls, movie theaters, airports, and yes, even airplanes at 35,000 feet above the ground. This latter scenario happened on a recent flight I took from Dulles International Airport (DC area) to Seattle International Airport (Seattle, Washington.)
Just a half hour into our five-plus hour flight, a female passenger of approximately 75 years of age became very agitated during our ascent and before the fasten seat belt sign was switched off, she climbed over the passengers in her row, carry-on in hand, screaming all the way to the back of the plane from Row 34. I was seated in Row 35. “Wow, she must really have to use the bathroom!” I thought. A flight attendant tried to get the passenger re-situated in her seat to no avail. Complicating matters was the fact that the passenger was from another geographical continent and not only did she not speak or understand English, it was determined that other passengers who had flown with her from that same continent (not any relation or connection to her) also could not understand a word that she said. In essence, she was speaking gibberish. That was the first sign to myself and the flight attendants, that a) this woman was flying alone; b) she was in severe distress; and c) she most likely had some sort of dementia and was trying to exit her environment. Not an easy task, nor one any of the United Airline employees were about to allow. Read the rest of this entry »
Too old to drive? Tips for families of elderly drivers
Too old to drive? Tips for families of elderly drivers.
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.
The Silent Cry of the Caregiver – AARP
Challenges of Providing Care for Spouse or Parents – AARP.
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.
Living: the ultimate team sport 