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!”
In all of my busyness, I was not aware of this gentleman’s response, contained in the link above, to Ann Coulter’s usage of a word that evolved people no longer use when describing those with Down Syndrome or other learning disabilities. During the most recent U.S. Presidential Election, I watched the interview in which Ms. Coulter used the R-word. She made no apologies, and she even scoffed at the idea of having to be politically correct all the time. I was horrified, but I didn’t do anything about it.
John Franklin Stephens did something about it – and did so quite eloquently. You are a hero to me Mr. Stephens, and you are a hero to the rest of us who have a heart of compassion towards others. A great definition of compassion is as follows:
Compassion isn’t a sign of weakness, but of civilization. – Nicholas Kristoff, Seattle Times columnist.
I think that as a society most of us are trying to be more civilized, rather than less. That doesn’t appear to be the case with Ms. Coulter.
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.
(Photo credit: TNLNYC)
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.
Sit down some day and take the time to write down as many experiences of loss that you can recall during your lifetime. Quite naturally, you will list times of grief resultant from a death in the family, grave illness, and the like. But there are other losses that we experience that can have just as much of an impact on our lives. The end of a marriage is one of those.
(Photo credit: Wikipedia)
The article linked above does a great job at shining the spotlight on the loss that is experienced when a marriage ends through divorce. Even if both parties to the marriage come to a mutual decision on the matter, the parties oftentimes enter a period of mourning. Understandably they feel a certain sense of relief at the conclusion of the divorce process, but a feeling of loss becomes a very unexpected part of their lives going forward.
My thanks to this Blogger for giving couples permission to acknowledge the loss they are feeling at the dissolution of their marriage – even one for which they were both on board.
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.
(Photo credit: Ralf Heß)
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.
A man and his wife had an argument one evening and weren’t speaking to each other afterward. He had a business flight in the morning, so before he went to bed, he wrote a note reading,
“Please wake me at 5:00 a.m.,” and left it on her pillow.
The next morning the man woke up to discover it was 7:00 and that he had missed his flight.
(Photo credit: prettywar-stl)
Furious, he was about to go confront his wife when he noticed a piece of paper next to his pillow. The paper said,
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.
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.
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.
National Adoption Awareness Month – my favorite because both my sister, and my niece, are adopted and my life is better as a result! www.adoptioncouncil.org.
Some of the daily celebrations:
1st: Teach a Friend to Homebrew Day
2nd: Plan Your Epitaph Day – would you trust just anyone to tell the truth?
6th: Marooned without a Compass Day – a/k/a Election Day
7th: Bittersweet Chocolate with Almonds Day
8th: Cook Something Bold Day (well, it is Peanut Butter Lovers Month!!!
11th: Veterans Day – thank you every Vet of past & present military conflicts!!!
12th: National Pizza with the Works Except Anchovies Day
13th: World Kindness Day – pass it forward everyone!!!
15th: Clean Your Refrigerator Day and America Recycles Day – it figures.
15th: Great American Smokeout – see November 19th if participating
17th: National Adoption Day – I love you Mary and Kristina!!!
19th: Have a Bad Day Day – see November 15th
22nd: Thanksgiving, followed by…
23rd: Sinkie Day – casual eating while standing at your sink www.sinkie.com
23rd: Black Friday – the busiest shopping day of the Holiday season and Buy Nothing Day (I don’t make up the rules)
26th: Shopping Reminder Day – do we really need this reminder?
30th: Stay at Home Because You’re Well Day – because it’s more fun than staying home when you’re sick!
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?
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.
During this highly contentious and rude political season, it’s really difficult to discern fact from fiction. Oftentimes we get caught up in the rhetoric spoken by Talking Heads and dismiss what we’re hearing based on which Talking Head is doing the talking.
For the most part, I’ve trusted what the AARP has put out regarding issues and candidates over the years so I felt fairly confident in posting this article.
If you want clarification about the following myths, please take the time to read the above link.
Myth 1: The new law cuts Medicare drastically, so I won’t be able to get quality health care;
Myth 2: I’ve heard that Medicare Advantage plans will be cut or taken away;
Myth 3: I’ll have to wait longer to see my doctor – or I won’t be able to see my doctor at all;
Myth 4: If I have Medicare, I will need to get more or different insurance;
Myth 5: The new law “raids Medicare of $716 billion”;
Myth 6: The law is going to bankrupt America;
Myth 7: The new law will drive up premiums astronomically;
Myth 8: If I can’t afford to buy health insurance, I’ll be taxed – or worse;
Myth 9: I’m a small-business owner and I’ll pay big fines if I don’t provide health insurance to my employees;
Myth 10: The Affordable Care Act (ACA) basically turns our health care system into universal health care. So now some government bureaucrat will decide how and when I get treated;
Myth 11: If my state doesn’t set up an insurance exchange, I can’t get health coverage.
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.
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 »
I know you’re accustomed to getting a joke from me on Lighten Up Mondays but I just had to give you a Mid-Week Funny Break that I thought you would enjoy.
A family who lived deep in the woods had no electricity in their home. The wife was about to have her first child, so the father hurried to find a doctor. At nightfall, the doctor asked the man to bring the lantern. After their baby girl was delivered, the man put the lantern back on the table.
Suddenly the doctor said, “Hurry, bring the lantern back!” and the man complied.
Another baby girl was delivered, and the man returned the lantern to the table.
“Quick!” said the doctor. “Bring the light back!”
“Doc,” said the man, “you don’t think they”re attracted to the light do you?”
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.
A week later, the Rolls driver passes the same MG Midget, which is parked on the side of the road – back windows fogged up and steam pouring out. The arrogant driver pulls over, gets out of the Rolls and pounds on the Midget’s back window until the driver sticks his head out.
“I want you to know that I had a double bed installed,” brags the Rolls driver.
The Midget driver is unimpressed. “You got me out of the shower to tell me that?”
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.
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.
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.)
Living: the ultimate team sport 