In the past year, I have lost two coworkers to cancer. Just recently another coworker left his job due to – you guessed it, cancer – so he could spend what remaining time he has with his family. These wonderful people were given a death sentence. They had a head’s up as to when their life’s end/deadline would occur.
Because I care for these people, I’ve been grieving and pondering what their remaining days and weeks were like.
What does one do when they leave their doctor’s office after receiving a fatal prognosis and a guesstimate of how much time remains for them? Of course the initial news floors them and their emotions run wild with rawness, sadness, fear, and maybe even extreme anger. But then they get home, hopefully surrounded by at least one loved one, and…then what?
Scrabble game in final stages (Photo credit: Wikipedia)
I know much discussion will ensue of an emotional, practical, and perhaps even legal manner. That goes without saying.
But do you then get out your bucket list and see if any remaining items can be checked off before time runs out?
Or how about a game of Scrabble? Does that seem too mundane and unimportant in light of life’s waning hours?
I’m not trying to be cavalier about this matter and I hope I’m not coming off as insensitive. I’m really troubled by even thinking about having such a prognosis and filling out my remaining days in a valuable way. And again, I’m thinking about my coworkers’ final days and wondering what those days were like for these stellar people. How did they manage?
Personally, I have a very realistic outlook on death – it’s certainly inevitable. I’ve accepted the fact that no one can escape it. And of course I have my preferences on the manner in which I die. For example, if I’m fortunate, I’ll follow in my mother’s footsteps when back on September 24th, 1994, she went to bed none the worse for wear, and never woke up again. Since no autopsy was done, we don’t know the actual cause of death but on this my family can agree – if we have the choice, we’d like to be taken by surprise – in as pain free a manner as possible. If I’ve left no statements unsaid, no deeds left undone, I’d rather not have a calendar in front of me crossing out each remaining day in my life.
How would I fill my days if, like my coworkers, I’m given a death sentence of a finite period of time?
I don’t have the answer, so if by chance you’ve been part of life’s final deadline with a loved one or close friend, what proved valuable to you and your loved one? How did you manage not to think of the remaining time every minute of every day?
In yesterday’s post, a Seattle Police Detective defined elder abuse as:
sexual abuse
physical abuse
financial exploitation
neglect
In Part 6 of Seniors for Sale: Placement perils and successes, Michael Berens, Seattle Times reporter, delves into the senior housing placement industry, focusing on one placement company that placed a client in a Tacoma-area Adult Family Home (AFH) with a history of safety and health violations – elder abuse – even a fatal event, but because the placement company had not done its research, it was not aware of the home’s previous infractions and kept placing unknowing vulnerable adults in the home’s care.
Many of these placement service companies operate state-wide and/or nation-wide, and believe that there is no way that they can help as many people as they do if they are required to visit each and every home/assisted living option available to the public that they are trying to assist. These companies are oftentimes characterized as Bed Brokers – an industry that is growing exponentially without much scrutiny or State controls.
CAVEAT: Just as in every assisted living situation – there are good senior housing options and there are bad senior housing options – so too there exist reputable senior placement companies, and not-so-reputable placement companies.
I personally think that these companies can be helpful to those looking for a senior housing option that suits their, or their loved one’s, needs. I caution those using these agencies, however, to understand that not every option out there is listed with placement companies. If a senior housing company does not choose to be listed with a placement service company, that option will not be offered, even if that particular housing option might be the verybest choice for some families: cost-wise, location-wise, and even service-wise.
In a news update, Michael Berens’ article, State gets tough on referrals for elder care, we see that attention is now being directed at these placement referral companies in the hopes that those they serve – vulnerable adults in need of some sort of daily care – are protected from those companies who are simply aiming to make a profit at the most vulnerable time in an elder’s life.
As I mentioned in previous articles found in my blog category, Senior Housing, there are numerous resources available for those looking for senior housing for themselves or a family member. Please go to that category and type in a search term in the space located on the right-hand side of the page to find the topic that interests you most.
Part 5, of Seniors for Sale: Hiding Harm: the human toll, is one example of the lack of reporting that goes on in some assisted living residential settings – in this case – an Adult Family Home (AFH).
When you watch the video link above, you’ll be shocked at how a particular accident happened – and its after effects on the victim – and you’ll be horrified at how long it took before it was reported to the police.
Perhaps this statistic will provide a partial explanation:
only 16% of all incidents of elder abuse are reported.
The Seal of Washington, Washington’s state seal. (Photo credit: Wikipedia)
Not only are many caregivers not reporting incidents of abuse that occur; surprisingly, family members fail to get beyond the denial stage when they discover that their loved one just might be in danger in the very location entrusted to his/her care. They can’t believe that the caregiving solution they found for their loved one has turned out to be disastrous in every way.
The police investigator for this case states the following:
We don’t tolerate domestic violence, but that’s not always the case with elder abuse.
The final episode of Seniors for Sale will be submitted tomorrow, Saturday.
It doesn’t get much worse than the video attached above. Two suspicious deaths are the focus of this episode of the Seniors for Sale series. The two cases discussed in this video occurred at the same Adult Family Home (AFH), Houghton Lakeview, located in a very swank area of Kirkland, Washington. It goes without saying that this Adult Family Home was shut down.
The Seal of Washington, Washington’s state seal. (Photo credit: Wikipedia)
Family members whose loved ones died at the hands of these caregivers speak out about how the abuse was discovered, and how the State of Washington did, or did not, effectively respond.
One of the family members whose father died at the hands of the caregiver/owner of the Adult Family Home poignantly stated:
It’s unfathomable to realize that we were paying these people to abuse our loved one!
Conviction results (attached) of one of the suspicious deaths was reported by the same Pulitzer Prize winner, Michael Berens, who wrote the series, Seniors for Sale.
What Needs to be Done? is the subject matter of Part 3 of Seniors for Sale. In this episode, the viewer is encouraged to do research about a facility, Adult Family Home or otherwise, prior to considering a move to that senior housing alternative. In my article, “Avoiding the pitfalls of selecting Senior Housing,” I provide helpful resources that everyone can use in order to find out:
if any complaints have been filed against a particular home;
if the State issued any citations, and the nature of those citations;
if the Long-Term Care Ombudsman office received particular complaints and the nature of those complaints.
The Seal of Washington, Washington’s state seal. (Photo credit: Wikipedia)
No one has to go into this housing search blind. Please view the very brief video provided in Part 3 of this Pulitzer Prize winning series by Michael Berens of the Seattle Times, then click on the attached article that I’ve provided for your assistance. Although the links I provided relate to resources in the State of Washington, similar resources exist nation-wide. Check with your State Ombudsman office or Department of Health and Social Services for your State’s equivalent.
The Great Seal of the State of Washington (Photo credit: Wikipedia)
The attached link connects you to Part 2 of 6 of this Pultizer Prize winning series written by Michael Berens of the Seattle Times. Please don’t give up hope. Once all 6 of these episodes have been provided – one per day – I will provide you with story outcomes and repercussions in the Adult Family Home industry in Washington State. Keep in mind – as I indicated in my first submission – although this horrific situation took place in the State of Washington, this type of abuse goes on in other states, and countries as well – whether in group homes, nursing homes, assisted living facilities or similar senior residential settings.
Are there stellar Adult Family Homes (AFHs) in Washington state? Absolutely. But of the 2,900 AFHs in the state, 446 of those were cited for major violations since 2010. The industry certainly was not regulated well enough to avoid such violations. That is changing.
My local newspaper ran an investigative report about the Adult Family Home (AFH) industry in Washington State. Depending upon where you live, a similar assisted living home may be called a Group Home.
The Seal of Washington, Washington’s state seal. (Photo credit: Wikipedia)
In Washington State, no more than 6 residents can live in an Adult Family Home. These “businesses” popped up all over Washington State over the past several years as entrepreneurs realized how much money they could make taking in residents and charging thousands for rent and resident care. At this writing, there are close to 2,900 AFHs in the state. Since 2010, 446 of those were cited for violations of health or safety standards. Caveat: there are many Adult Family Homes that are doing an extraordinary job, but it’s the bad ones that make the Headlines and that’s the way it should be.
June is Elder Abuse Awareness Month. I thought it appropriate to provide Michael Berens’ series, “Seniors for Sale” in six parts this week, but I provide it with a warning that this Pulitzer Prize winning expose can be very difficult to read, and watch. Nevertheless, awareness is key, so I hope all will benefit from his extensive work on this piece. Whether you live in the United States, Singapore, the United Kingdom, or elsewhere globally, abuse occurs world-wide and it’s the vulnerable adults in this world who are its targets.
Seniors for Sale – I provide this link to Part 1 of the series – “Ann.”
(Photo credit: The Library of Congress)A secret agent was sent to Ireland to pick up some sensitive information from an agent named Murphy. His instructions were to walk around town using a code phrase until he met his fellow agent.
He found himself on a desolate country road and finally ran into a farmer.
“Hello,” the agent said. “I’m looking for a man named Murphy.”
“Well, you’re in luck,” said the farmer. “As it happens, there’s a village right over the hill where the butcher is named Murphy, the baker is named Murphy, and three widows are named Murphy. Matter of fact,my name is Murphy.”
Aha, the agent thought, here’s my man. So he whispered the secret code:
“The sun is shining…the grass is growing…the cows are ready for milking.”
“Oh,” said the farmer, “you’re looking for Murphy the spy – he’s in the village over in the other direction.”
I know that all of us want to see an end to Alzheimer’s disease. Many of you have Alzheimer’s or other dementia, and even more of you are helping to take care of your loved ones.
Rarely has there been an opportunity to provide input in such an international forum. This survey can be completed around the world. It is not just intended for one country. The primary topic of the attached survey revolves around the stigma attached to dementia. You will be asked questions about how your loved one is treated, how you are treated as the caregiver for your loved one, etc. Your responses are entirely anonymous. You will not be asked to provide your name, nor a physical address, nor your e-mail address.
I hope you’ll consider filling out the online survey. It was VERY quick, so you need not spend a lot of time on the survey.
In an earlier article,“Retirement planning – its not what you think,”I talked about the planning required to have a quality of life after retiring from one’s job that relies on spending your time in a way that pleases you, and benefits others.
My closest friend, Sophia (not her real name), is in her 80th year of life and for the seven years that I’ve known her, Sophia has struggled with boredom, but not just boredom per se. Sophia wants to matter; she wants to make a difference; she wants to contribute to the world around her. In a recent e-mail to me, Sophia said:
“There are too many active Seniors roaming around the coffee shops and Malls wondering what to do next. Even my friend Walter, at age 97, felt a sense of accomplishment yesterday when he washed all the bed linens and remade the queen bed – this done using his walker, back and forth.”
(Photo credit: Wikipedia)
Sophia epitomizes the bored retiree that I discuss in my article, “Voices of the bored retirees.” We often think that when we retire we’ll be satisfied with being able to golf whenever we want; sleep in as long as we want; work in the garden whenever we like, and read all the books we’ve stacked up, but not had the time, to read. My father was one of those retirees who longed for the opportunity to be on the golf course as often as he wanted. A month post-retirement, he was bored with it all.
Another quote from my friend Sophia: “I really believe that much that we call Alzheimer’s is just a simple lack of interest in remembering what no longer matters. There is definitely a veiled space that occurs now and then when it is either too painful to remember, or not worth it to try. This, in addition to physical pain and boredom, can reach a kind of black hole.”
I know my friend very well, so I know that she doesn’t support that type of Alzheimer’s reasoning, but what she said really resonated with me. Too often we focus too much on what doesn’t matter, and far too little on what can matter greatly in our remaining years. Gerontologist S. Barkin believes that we have a responsibility to actively walk through our retirement (or Baby Boomer) years:
“What do we want to do for the remaining time in our life? We all should be mining our experiences and the wisdom therein to help with our present, and our future paths.”
Most of us, even when we’re enjoying the relaxation we so richly deserve in our retirement, truly strive to create a new purpose for our life. We want a reason to get up in the morning. We strive to contribute to the community around us.
Does the retirement age need to be raised in order for that to occur? Or can we be just as effective, and less bored, by cultivating a lasting purpose after we’ve entered the long sought-after retirement phase of our lives?
This article from a fellow blogger who happens to live in Singapore is very timely in that it discusses how a caregiver might sort out their thoughts when caring for a loved one with Alzheimer’s or other dementia.
I really enjoy this blogger’s way of writing about her journey – she’s a caregiver for her mother.
The attached article reflects the sentiments of Bob DeMarco, a son who took care of his mother Dotty for over 8 years during a difficult Alzheimer’s journey. He rarely complained – which is stellar, but not required – and now a few weeks after her death, he’s falling back on the memories and finding joy amidst the grief.
An insurance agent from a large, widely-known insurance company recently told me that 50% of all applicants for long-term care (LTC) insurance are rejected. Boy, with those statistics, it’s hardly worth pursuing, knowing that the hurt of rejection might be in your future.
John Matthews, Caring.com senior editor and attorney gives all of us a reality check:
“No one has a ‘right’ to buy long-term care insurance. That results in insurance companies refusing to sell policies to people they think are likely to collect on the policies soon, or who might collect for a long time. If an insurance company thinks the odds are that it might not make money on you, it won’t sell you a policy.”
WOW – that’s encouraging isn’t it?
While doing research for this article, I found the information provided by insurance brokers about LTC insurance to be very enlightening. Apparently many LTC insurance companies will accept you as an insured if you have had open-heart surgery, but will balk at covering someone who has arthritis. Why you may ask? I was told it is because the insured with heart issues will die before needing benefits whereas the person with arthritis will most likely become disabled and therefore cost the insurance company too much money in benefits payout.
Wow – that’s depressing, and somewhat maudlin, isn’t it?
I stand by my earlier article, Long Term Care Insurance Scares Me. Insurers are trying to sell a product for which so few are eligible. I thought I was scared before. Now that I’ve done my research, I’m petrified!
Please share your experiences trying to obtain LTC insurance. Whether you were accepted or rejected – we want to know. If you were rejected and appealed the insurance company’s decision – we REALLY want to hear about it.
I found the attached article very interesting and promising. Anyone who has been a family caregiver, or a professional caregiver, knows the seemingly insurmountable struggle to engage with someone who has Alzheimer’s or other dementia.
My work path in life always includes those with dementia so I will definitely look into this therapy. But let’s face it – as us Baby Boomers move onward into our future, we’re already looking for ways in which to brighten our memories when what we’re searching for may be on the tip of our tongue, but it refuses to jump off!
Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine. Statistics on aging are astounding, and scary. “By 2020 some 6.6 million Americans will be age 85 or older.” That’s an increase of 4.3 million from the year 2000. Time to celebrate – right? We’re living longer – and in some cases – thriving in our older age. The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.
The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility. The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.” Nice sentiment – but not always possible.
I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one. Below are links to each of those articles. I hope they prove beneficial to you.
The attached article provides a wonderful starting point for those caregivers who know that the outcome of their loved one’s Alzheimer’s or other dementia is a certainty.
Preparation is key. We can never be fully prepared for the time when our loved one dies, but we would be wise to make some sort of plan while we’re months away from grief’s impact. I’m not talking about the legal planning that, hopefully, is already in place. I’m referring to the day-of-impact planning that will carry you through one of the most difficult times of your caregiving journey.
DEATH – not everyone is comfortable discussing this topic even though it is as certain as, well, death and taxes. Death to many is a taboo subject and dealing with its aftermath, a foreign concept. It stands to reason, therefore, that during your time of grief, some of your acquaintances may blunder their way through trying to help you. Use discernment in setting up your Emotional Support Team and PracticalSupport Team.
EMOTIONAL SUPPORT TEAM. You know the acquaintances upon which you’ve always been able to rely, so place them at the top of your plan’s contact list. These are people with whom you’ve shared all the personal intricacies of your life; they understand how you tick, and can oftentimes predict what you’ll need before you even know you need it.
PRACTICAL SUPPORT TEAM. These acquaintances fill in the gaps that will no doubt be made as you’re dealing with the “business” of dying. Some examples of tasks they may perform: picking up the grandkids from school; providing light housekeeping; picking up the dry cleaning; running to the post office for you. The list is endless but chances are you have a few friends who would relish the opportunity to help out in this way. They may not be strong in providing emotional support but excel at the “doing” type of support.
Grief is personal and there’s no set period of time that it’s supposed to last. Just as every person in this world is different from everyone else, grief is intimately personal for those going through it. If outside help in the form of grief support groups is available, look into churches, hospitals, hospice centers and the like who offer such groups. Have their number handy and don’t hesitate to call them. For the most part, you know what might help you most, but if you find yourself floundering and unable to function, do yourself a favor and accept the support that your dedicated friends offer. There’s no shame in doing so. Who knows, you may be providing that same support to them some day. What a wonderful way to return the favor.
More often than not, a senior citizen moving into a long-term care (LTC) facility is doing so under duress. “My kids said they’re not comfortable with me living on my own anymore. Well I’m not comfortable living in this old folks home!”
(Photo credit: Wikipedia)
Sound familiar? It should. I am a LTC Ombudsman in Washington State and I can’t tell you how often I hear residents who provide nothing but negative comments about their living conditions. Regardless of how good the building; regardless of how fabulous the food; regardless of all the fun activities in which the residents participate, they are still not happy because the overriding dissatisfaction of not being in control of where they want to live colors all that they do.
And I agree with them.
Losing control and losing independence – a natural outcome of getting older? Gosh, I hope not. For the most part, a person moving into a long-term care facility has been in charge of their life – managing finances, choosing when and where they want to drive in their vehicle, eating whatever they want, whenever they want – in short, doing whatever they damn well please! Suddenly someone else, regardless of how well-meaning, takes those freedoms away and those choices because they’re not comfortable leaving mom and/or dad alone in their own house.
In my article: “Adjustment disorder: a long-term care facility side-effect,” I talk about the difficulties that befall the elderly as they endeavor to acclimate to senior living. Think about it! Going from a schedule-free life to a regimented one is difficult – whether you’re a young adult going into the military, or a senior citizen moving into an institutional living situation. Both generations suffer greatly during this adjustment period but the adjustment takes longer when you’re in your late 70’s and upward. And don’t forget, if the senior citizen wasn’t the one making the decision – choosing to move out of her home and into a senior housing community – the adjustment period will take longer still.
How can the adjustment period be made easier?
As advocates for residents in long-term care living situations, LTC Ombudsmen emphasize and promote a resident’s right to make choices about pretty much everything that goes on in their new “home.” What a novel idea! Some of the choices that we know are important to residents are:
Choosing the clothes they want to wear.
Choosing what time they want to go to a meal. Even if the resident wants breakfast after posted dining room breakfast hours, the culinary staff must make reasonable accommodation and provide some sort of breakfast item for that resident.
Choosing which activities – if any – in which the resident wants to participate. No one should be forced to go somewhere against their will – that’s called coercion. “Come on sweetie, you’ll like it once you get there.” No!
If the resident is on some sort of care plan in the facility, the resident has the right to refuse care, even if it might be to that resident’s detriment. When she was living in her own home, she had that right – nothing’s changed – only her environment.
The resident can even choose to move out of the long-term care facility if she chooses. Don’t forget, it wasn’t her decision to move there anyway. Long-term care housing isn’t a prison – she can leave if she wants to, even if doing so goes against the wishes of the family, and against the advice of her physician.
The bottom line is that residents in long-term care facilities aren’t children who need someone else to make decisions for them. Granted – some residents with major cognitive decline may rely on others, such as a Power of Attorney (POA), to make decisions for them – but even then, that POA should be making decisions that the resident would have made if he/she were still capable of doing so.
Put yourself in your parent’s or grandparent’s shoes. How would you feel if your opinions, wishes, and rights were dismissed? Feels lousy, doesn’t it?
How in the world did I get lost driving to the supermarket – a route I drive at least once a week!
My words are getting all jumbled up and my sentences aren’t making sense.
What’s happening to me?
Are you one of the many people who started to take a medication to resolve a condition, or at least to make it better, only to end up with distressing – and life-changing – mild cognitive impairment?
How long did it take for you and your doctor to realize that this horrific change of condition was caused by a medication that was added to your health regimen?
What types of expensive, and grueling, tests did you go through prior to coming to that conclusion? Did any of you go through neurological testing?
And how long did it take for you to feel “normal” again once you took your doctor’s advice to either go off the medication or replace it with a medication that did not cause cognitive decline?
I am personally aware of several people who experienced cognitive decline after taking the Pfizer drug, Lyrica (pregabalin). This drug was originally intended for treatment of neuropathic pain and as an anti-seizure medication, but was approved for treatment of fibromyalgia in 2007. Additionally, cholesterol-lowering statin medications oftentimes cause the same cognitive outcomes. And with the Pfizer drug Lyrica, increased depression – even suicide or newly diagnosed depression – were directly linked to this drug.
As Baby Boomers, we’re entering a phase where, depending upon what ails us, we start adding prescription medications to our health regimen in an attempt to have a high degree of health and well-being.
We need to be completely aware of how a medication may affect us, but it’s unfortunate that most of our awareness is dependent upon the Patient Information Sheet provided by the pharmaceutical companies. These information sheets are sketchy, at best, and carry only half-truths, at worse.
Do you have similar experiences you can share? We’d like to hear from you because awareness, and education, will help us all.
Top brass from the Army, Navy, and Marine Corps were arguing about who had the bravest troops. They decided to settle the dispute using an enlisted soldier from each branch.
ARMY: The army general called a private over and ordered the private to climb to the top of the base flagpole while singing “The Caissons Go Rolling Along,” then let go with both hands, and salute. The private quickly complied.
NAVY: The admiral ordered a sailor to climb the pole, polish the brass knob at the top, sing “Anchors Aweigh,” salute smartly, and jump off. The sailor did as he was told and landed on the concrete below.
MARINES: Finally the marine was told to do exactly as the army and navy men had done, but in full battle gear, pack filled with bricks, loaded weapon carried high.
The marine took one look at the Marine general and said, “You’re out of your mind, sir!”
The Marine commander turned to the others and said,
The link above is a blog entry by a delightful woman who is taking care of her husband. Being a caregiver of someone with Alzheimer’s or other dementia is challenging in so many ways but this blogger truly knows how to find the silver lining in her experience as a spousal caregiver.
“Curtain #1 beautifully portrays a day’s challenge as an adventure, not unlike the game show Let’s Make a Deal. You never know what will be behind the curtain – a prize, or a zonk – but this wife’s way of looking at each experience is very refreshing. I don’t think I would handle the circumstances nearly as well as she does. I hope she knows that having a bad day, and one with less-than-perfect attitudes, is more than o.k. because we’re only human, after all. Until we reach perfection, we’ll just have to do the best that we can with what we’ve been given.
In a NY Times piece, Testing a Drug that may stop Alzheimer’s Before it Starts, it was announced that a drug, Crenezumab, is set to be tested early next year on families who carry the single genetic mutation for Alzheimer’s – people who are genetically guaranteed to suffer from the disease years from now but who do not yet have any symptoms. Most of the 300 participants for this study will come from one extended family of 5,000 members in Medellin, Columbia who have been horrifically affected by this disease throughout their extended family.
This Colombian family’s story is presented in an astonishing video within the article’s link above. For decades, these family members started showing Alzheimer’s symptoms in their mid-40’s and the progression was so rapid that they advanced to full-blown dementia by the age of 51. The effects on a society, and a family’s dynamics, is eye opening to say the least. Let’s face it, in this video when a Colombian pre-teen is shown feeding his father, the role reversal is unmistakable.
The Study’s 300 family member participants will be years away from developing symptoms – with some being treated as young as 30 years old – but the hope is that if this drug forestalls memory or cognitive problems, plaque formation, and other brain deterioration, scientists will have discovered that delay or prevention is possible.
This drug trial has a long road ahead of it, but the study will be one of only a very few ever conducted to test prevention treatments for any genetically predestined disease. In an Alzheimer’s world where very little good news is forthcoming, it’s nice to see even a slight glimmer of hope.
The article attached above is from a blog diary kept by Dotty’s son, Bob DeMarco, from the inception of Dotty’s diagnosis of Alzheimer’s to the end, which is very near almost nine years later.
My Dad and I on a picnic, Spring 2005.
Dementia care is a very high station in life. That’s what Bob DeMarco believes, and so do I. Dementia caregiving is one of the most difficult challenges anyone can face and not everyone excels at that task. Bob has indeed excelled and there are many of you for which the same can be said. I sincerely believe if you can get through that journey, you can handle just about anything life can throw at you. My caregiving journey with my father ended in 2007, so I am speaking from experience, not just with an educated opinion.
Is Alzheimer’s an automatic death sentence? Many in the medical community, including the Alzheimer’s Association, will declare that indeed it is a death sentence. I think one of the reasons why so many believe that to be the case is that at this point, there is no cure. There are no thoroughly effective medications or treatments that cure it or stop it in its tracks. A person gets an infection? A regimen of antibiotics is prescribed and poof – the infection goes away. Someone is diagnosed with a particular cancer – a treatment regimen is prescribed and as a result many cancer patients become former cancer patients. Not so with Alzheimer’s or other dementia.
There’s no such thing as a “former Alzheimer’s patient.” At this point, the only former Alzheimer’s patients are those who have passed on. If I interpret correctly what Bob DeMarco said in the above attached article I think he may be saying that if you start your Alzheimer’s/dementia journey convinced that the disease is a death sentence,those involved, especially the caregiver, might not work nearly hard enough to make the patient’s remaining life one that can be called a dignified, quality life.
“Surviving” a disease takes on an entirely new meaning. It sounds as though Bob set out to make sure that his mother, Dotty, had a quality of life that she was able to live for an extended period of time. For that reason he can confidently say the following: “We did survive. We are survivors.”
Well done Bob and Dotty. You are beautiful examples of how to be a survivor when the odds are stacked up against you.
It’s so unfortunate that Alzheimer’s, and other dementia, have become the new condition to avoid and/or not acknowledge. A dementia diagnosis is SO difficult for everyone – including the one with the disease. I think this article is very well done and provides a perspective of which many need to be aware. Dismissing, or using euphemisms for this disease e.g., my wife has some memory problems – won’t make it go away. Helping others to understand – not necessarily accept – this diagnosis is a very worthwhile endeavor.
A very moving story in the New York Times, When Illness makes a Spouse a Stranger, provides a moving testament, contained in an article and a video, of the commitment required when a spouse becomes a stranger.
When Michael French was diagnosed with frontotemporal dementia, his wife Ruth was told that the best way to describe this type of dementia is that the brain atrophies. This dementia is not like Alzheimer’s, the most common form of dementia. Frontotemporal dementia strikes younger people and progresses much faster than other dementia.
How does one continue to have a relationship with someone who has become a complete stranger, especially one’s spouse? Ruth says that what is left in their relationship is love – that’s all – and that’s enough for her right now.
This story, and the accompanying video, are very moving and somewhat intense, but very much worth viewing.
It’s not often that we have the privilege of hearing from someone who has dementia, providing us who don’t have dementia, with some caregiving tips. Please take the time to listen to this person’s voice.
![[Cave Hill. Belfast. County Antrim, Ireland] (LOC)](https://i0.wp.com/farm3.static.flickr.com/2685/4427440796_fb346caacc_m.jpg "[Cave Hill. Belfast. County Antrim, Ireland] (LOC)")
Living: the ultimate team sport 