A recent NY Times article, On Dying After Your Time, poses many topics for discussion that must be addressed. I knew before I even started to read the article that readers will have varying opinions on the matter of extending life beyond its appointed time to die. These opinions will be based on ethics, biases, age of the reader, and religious beliefs, to be sure, but another factor that comes into play is the personal experience of each reader.
If the reader has watched a loved one perilously balanced in limbo with a ravaged-by-disease body and/or mind, that reader might lean towards declaring that too much is being done to artificially prolong life. In the past five years of my life, I have watched both my father and my sister-in-law die from Alzheimer’s. Who they were at the end of their lives didn’t come close to resembling who they were pre-disease. If the reader has had no experience with this aspect of life and death, that reader may feel more comfortable with the decision to throw every treatment possible at the patient with the goal of allowing that person to live as long as humanly – or scientifically – possible.
One of the issues presented in the NY Times article is the fact that as we live longer, there is an increase in the amount of chronic illnesses – a fact that certainly stands to reason. “This rise in chronic illness should also give us pause about the idea, common to proponents of radical life extension, that we can slow aging in a way that leaves us in perfectly good health…The evolutionary theory of senescence [growing old; biological aging] can be stated as follows: while bodies are not designed to fail, neither are they designed for extended operation.”
The author of the NY Times article is an 83 year old man who closes out the piece by stating, “We are not, however, obliged to help the old become indefinitely older. Indeed, our duty may be just the reverse: to let death have its day.”
If you haven’t yet formed an opinion on the matter of life-extension at all costs – I encourage you to do so before it’s too late. Life and death decisions are best made well in advance of the necessity of such decisions.
Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike. The attached article is well-worth the read, and I have a few comments of my own to add.
I acknowledge that sexual activities most likely occur in every long-term setting out there. Consenting adults – even those with varying degrees of dementia – need touch and physical connection. I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection. In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip. Or perhaps a hug and a kiss are involved. All of these actions are perfectly innocent without harm as long as all touching is consensual.
Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.
What about those patients who are already married to someone else?
It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one. The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment. (I think it’s important to not assume that adulterous motivations are in play here.) Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.
I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet. And you don’t have to agree with what I’ve stated above. The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.
One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.” The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs. There are no completely right or completely wrong answers. I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject. I take comfort in that fact.
Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP. The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving. A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”
Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment. Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing. She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.
In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second. “No way,” you say, “my mom/dad/spouse come first; they need me!” You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them. That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.
Most of us learn the hard way. We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno. Do yourself – and your loved one – a favor. If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself. You will benefit from such care, and so will your loved one.
I wrote the article below with an exhilaration that threatened to carry me into the air and cradle me on Cloud 9.
Since that time, the children in Washington, D.C. have been battling it out on the playground, most not playing fairly, and all of them holding strong to an agenda that appears to be designed to promote their party, rather than their constituents.
I wondered aloud, “If thousands of national parks are closed, 100’s of thousands of employees are furloughed, and service members’ families are being robbed of benefits, what luck does the Alzheimer’s research money have of remaining designated for that cause?”
So I wrote an e-mail to the National Institutes of Health and asked them this very question. What follows is the automated response I received:
Due to the absence of either an FY 2014 appropriation or Continuing Resolution for the Department of Health and Human Services, no one is available to respond to your message. If you require immediate attention, please contact NIH Service desk at 301-496-HELP or via web http://itservicedesk.nih.gov/support.
Asked and answered.
September 25, 2013
In today’s news, the National Institutes of Health (NIH) announced that grants for research to discover therapies for Alzheimer’s disease have been awarded in the amount of $40 million from the Office of the NIH director, and $5 million from the National Institute on Aging.
In all the reading that I’ve done, I’ve discerned that the magic words when it comes to finding treatment and/or a cure, are “clinical trials.” The new funding of $45 million will advance the current research being initiated in the form of clinical trials, thereby offering hope to all of us who live long enough to be at risk for acquiring this disease.
The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved. The toll on the patient – measurable, as you will see in this Shapiro family video.
The toll on the family – especially those caring for a member with the disease – beyond measure. Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self. Can you imagine it?
Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.
If you can help monetarily, please do so: www.alz.org.
If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.
Whatever you do, please do something to make a difference.
According to the World Alzheimer’s report:
If dementia were a country, it would be the world’s 21st largest economy, ranking between Poland and Saudi Arabia. In the year 2010, the total world cost for caring for the dementia population was $604,000,000,000 (billion).
By 2050, in the United States alone, the costs for caring for the dementia population will be: $1,200,000,000,000 (trillion). That’s more than 1,000 x $1 billion.
Are you thinking of making any charitable contributions to a worthwhile organization before the end of the year?
and I’m as mad as hell about the millions of crimes that it has gotten away with.
Alzheimer’s and other dementias are unfair to the one diagnosed and to all those involved in that person’s life. The unfairness unfolds with the worst day of that person’s life – diagnosis of a disease for which there is no cure – therefore it is always fatal – and it is a disease where little progress has been made in treatment options.
Let me introduce you to two fabulous people who are no longer with us because this disease killed them. Yes, Alzheimer’s murdered them.
My father, Don, was born in 1918 in Toronto, Canada. He married my mother, Patricia, and they had three children. They became U.S. citizens in the late 1940’s/early 1950’s. My father was an extremely distinguished, courteous, humorous, and dedicated family man. He received his Alzheimer’s diagnosis on June 3rd, 2005 and I was there by telephone conference, having attended his initial neurological evaluation a couple weeks earlier. He died at approximately 12:10 a.m. on October 13th, 2007.
My sister-in-law, Nancy, was diagnosed with mixed dementia just a few months after my father died. Nancy was born in 1942 in Quincy, Massachusetts. She graduated from UCLA with a degree in flute performance and used those skills in many venues throughout her life. Nancy had three children from her first marriage – children of which she was very proud. Nancy was an extremely talented interior designer, opening her own design business in 1987 – the same year that she married my brother, Don. Nancy died from mixed dementia, that also included Alzheimer’s, at approximately 11:05 a.m. on July 4th, 2012. Just two and a half months later, my brother and sister-in-law would have celebrated their 25th wedding anniversary.
Saturday, September 21st, 2013 is World Alzheimer’s Day. One in every three seniors dies with Alzheimer’s or other dementia. If you do not die from Alzheimer’s, you die with it. From Alzheimer’s Association 2013 Facts and Figures.
Won’t you consider making a monetary donation in the hopes of capturing this murderer?
U.S. website for the Alzheimer’s Association: www.alz.org
International website: www.alz.co.uk
Other countries have their own dedicated websites as well. Please find those sites through any search engine you would normally use, and let’s slap the cuffs on this criminal disease.
The above public service announcement shines a spotlight on a disease that will affect you one way or another:
You may receive an Alzheimer’s diagnosis or I may receive an Alzheimer’s diagnosis
- A loved one of yours may receive an Alzheimer’s diagnosis and you’ll be his or her caregiver
- A good friend of yours; a neighbor; a coworker may receive an Alzheimer’s diagnosis
The point is – just as all of us know someone who has had, or currently has, cancer – all of us have some sort of connection to someone who has Alzheimer’s or other dementia.
None of us is immune to this disease that steals a person while their heart is still beating.
When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things. Didn’t you feel better once you checked that “To Do” item off your child-rearing list? I know I did.
“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!
Or perhaps it’s the other way around. The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues. Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.
Consider this scenario: Dad is dying of cancer and in a coma. Your mother has already passed on, and you have no idea what your dad wants. His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma. Does he want breathing assistance? Does he want intravenous liquids and nourishment? Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?
What’s a son or daughter to do? Wing it?
Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious. There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids. Her body is in the active stages of dying.
In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive. You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father. Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world. When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.
What’s a son or daughter to do? Follow mom’s wishes.
What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them. It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible. The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.
Both of my parents gifted me and my two siblings with documented specific wishes for their life and death. My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t? My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer. There was no guessing when it came to the time when us three adult kids rushed to his bedside. He was comfortable in his death, and we honored him by following his wishes for no intervention. Did I want my dad to die? God no. I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.
The attached article, written by a blogger in the UK, is straight-forward and thought provoking – it should be.
I live in Washington state, and I am glad that Death with Dignity is a legal option assuming all the legal requirements are met. This is a very personal subject matter, as is the choice that individuals will make to seize the opportunity, or to reject the opportunity. There is definitely a separate element of this option when the law is utilized for those with dementia. When is someone still capable of making the decision?
A non-profit in my state, Compassion & Choices of Washington, is an excellent resource for materials and information. They have even developed an Alzheimer’s Disease and Dementia Mental Health Directive – a first-of-its-kind directive that allows people – while still competent – to document their wishes related to who will provide their care, where care will be provided, how it will be financed, how to deal with difficult behaviors that may arise, and many other matters that both caregiver and patient face. Bless all of you who face this horrific disease that has no effective treatment, and certainly no cure.
I’m attaching the above article from a fellow blogger. He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being. The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.
Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens. Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities. Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.
Worse? Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse. I know that you and I are quick to say, “Fantastic! What a great relief that would be if the person no longer lived with his or her abusers!” We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings. These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.
These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me. Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.
That makes me mad.
Alzheimer’s Disease: Your Questions Answered | PBS NewsHour. We need all the help we can get in order to make well-informed decisions about any caregiving journeys that might occur in our future. The attached article shows a snapshot of one adult daughter’s 24/7 caregiving journey with her mother.
Perhaps you’re saying that you don’t anticipate your parents requiring any caregiving assistance in their frail years (perhaps your parents have already passed so no need exists there.) Do you have any siblings? close friends? a significant other? If you answered “yes” to any of those designations, the possibility exists that you will be called upon – or you’ll volunteer – to be of assistance to someone who needs help with their activities of daily living (ADLs).
Taking care of a loved one is no easy task. It doesn’t matter how much you love the person, your patience and your abilities will be tested. I truly admire the subject of this PBS article. Rebecca Wyant is the full-time caregiver and guardian of her mother, Mary Wyant, who was diagnosed with Alzheimer’s at the age of 65. Mary moved in with her daughter in 2006, is now 74 years old, and Rebecca is in her seventh year of personally providing her mother with full-time care.
How does Rebecca do it? She thought she was prepared for the task but soon discovered that finances, and creative ways of managing her mother’s care, are dwindling resources. With that said, however, Rebecca states that she is the only person who can provide the care that she can. She agrees that professionals could provide the care, but absolutely no one could possibly care for mom as Rebecca can. That part of the video disturbs me a bit, and I’ll tell you why.
I was an Alzheimer’s Association caregiver support group facilitator for several years and heard the voiced concerns of those daughters, sons, and spouses, who carried a great deal of guilt on their shoulders for not being able to keep up with the care of their loved one. They did provide the care initially, and then found their abilities wanting – and their health declining. They eventually made the very difficult decision to place their loved one in an assisted care setting.
Here’s the story of “Constance” and “Robert.” Constance first came to my support meeting at the age of 80 having already taken care of Robert at home for the previous three years since his diagnosis. Constance’s health started to decline due to lack of sleep – Robert’s dementia had no respect for the clock. Added to that dilemma was the fact that she had no existence outside of her house. She was trapped! Her friends abandoned her, all the social activities in which she had participated fell by the wayside, but she refused to move her husband into an assisted care setting, even though she felt they had the finances to support such a move – many do not and have no choice but to provide 100% of the care. “No one can take care of Robert like I can. I would never do that to him – placing him in someone else’s care. That’s my duty as his wife; a duty I take seriously.”
Fast forward one year later, and Constance had no choice but to place Robert in an adult family home with five other residents; it was either that, or she would have been forced to relinquish her caregiving role because, quite frankly, she ran the risk of dying before Robert. Once she relocated Robert to a care home, the well-trained staff provided all the assistance Robert needed, and Constance could now have the sole role of being his wife. She visited him almost daily until the day he died one year later.
Constance admitted that she wished she had moved Robert to the adult family home earlier than she had because she realized that being a committed wife didn’t have to include caregiving that risked her own health. She relished her reprised role as his loving wife when she visited him – none of the other care staff could fulfill that role but her – and the staff did what they do best, providing all the care her husband needed.
This is the nugget I want you to come away with from my above commentary: guilt and obligation are normal emotions that might prevent you from making decisions that may very well be in your best interests and those of your loved one. Please believe that allowing someone else to take care of your loved one does not equate to you shirking your familial duties. It does, however, tell me that you know your limits, and you know what is best for your personal situation in the long run. Additionally, it shows that you value your long-standing role as a daughter/spouse/partner/sibling, more than any new role as a care provider. There’s something to be said about retaining your given role in a relationship.
Caveat: as I indicated above, finding affordable care outside of ones home is no easy task, and you may have no choice but to provide the needed care for your loved one. But if you are able to find trusted family or friends who can “spot” you from time to time so that you can enjoy a needed time of respite, please do so. You’ll be far more able to carry out your caregiving task if you take care of yourself first. See my article: Caregiver: put on your oxygen mask first.
I’m thrilled about the above Blog article that just happens to have been posted today, my 60th birthday! There is a lot of substantive content in my fellow blogger’s posting: a link to a New Yorker Magazine article by Rebecca Mead, titled A Sense of an Ending; Phillip Toledano’s photographs of dementia; and, of course, the Blogger’s own contribution to the topic. The aforementioned blogger, Kathie Ritchie, maintains an exceptional blogsite, http://www.mydementedmom.com.
I hope you’ll visit all of the above – and be better off as a result.
A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones. For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.
Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load. Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.
But does such monitoring invade the loved one’s privacy? Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring. Or do they? What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life. But I digress.
At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place. The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly. If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away. In reality, however, medication mismanagement might be taking place, carried out by the parent.
The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day. The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening. I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it. HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits. Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.
I’m skeptical of Comfort Zone but I’m also its fan. I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation. My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past. A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few. More disease control financing = more cures.
One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences. So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden. Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind. Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible. I’m sorry to burst your bubble – but it’s true.
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.
In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come. I also talked about caregiver statistics.
One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds. In actuality, the stats are far greater than that. Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one. I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.
The following statement is attributed to former First Lady of the United States, Rosalynn Carter:
There are only four kinds of people in the world – those who have been caregivers,
those who are currently caregivers,
those who will be caregivers, and
those who will need caregivers.
I really don’t think there’s any way around it. How about you? Have you dodged the caregiver or being-cared-for bullet yet?
Lest you think that Alzheimer’s has nothing to do with you, look at the following statistics provided by the Alzheimer’s Association:
- By the year 2050, nearly one million new cases will be diagnosed each year – that’s one American developing Alzheimer’s every 33 seconds. Taken further, that most likely equates to nearly one and a half million new family caregivers each year – considering that at least one family member will be involved in managing a loved one’s care;
- Ten million Baby Boomers will get Alzheimer’s;
- On average, 40% of a person’s years with Alzheimer’s are spent in the most severe stage of the disease;
- The number of Americans that die each year from Alzheimer’s disease has risen 66% since the year 2000;
- Alzheimer’s is the sixth-leading cause of death in the United States;
- Today, there are no Alzheimer’s survivors – none.
Please take time to read the article I’ve attached above and consider the following: We are going to pay for Alzheimer’s one way or the other – now, or later.
This is a disease that will affect you, your children, your grandchildren, great-grandchildren, and beyond. Burying our heads in the sand won’t solve anything. Please consider donating to the Alzheimer’s Association as well as contacting your state’s congressional leaders asking for greater federal funding for Alzheimer’s research. Why? Because of this staggering statistic:
According to the National Institute of Health, the federal government currently spends much less money on Alzheimer’s research, prevention, and cure than on other conditions such as cancer, heart disease, and HIV.
- $6 billion for cancer;
- $4 billion for heart disease;
- $3 billion for HIV/AIDS; but just
- $480 million for Alzheimer’s disease.
I’m not comfortable with those numbers – are you?
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.
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.
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!
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 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?
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.
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.
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.
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.
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.
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.