I don’t know about you but I am quite terrified of the possibility of discovering that I have Alzheimer’s Disease. Alzheimer’s is the new scourge of our times. It is the cancer that was once in that position at the top of the whispered list of dreaded diagnoses. But what you may not know is that Alzheimer’s Disease is the sixth leading cause of death in the United States today. It is the only cause of death in the top 10 in America that cannot be prevented, cured or even slowed down. I don’t know about you but I find that quite shocking that we have very few resources to effect a change to this disease.
Most people know someone with this diagnosis and most thought only elderly people were found to have this diagnosis. It used to be called senile dementia. Unbelievably, there are more than 5 million Americans living with this disease in the United States today. That is more than the population of the entire state of Utah. And many being diagnosed these days are not so very elderly – like in their early 50’s.
The thing that is so disheartening to me is the effects of Alzheimer’s Disease. It robs us of our very being, our mind, our intellect, our capacity to function and to interact in the world. It carves up the brains ability to be our functioning engineer so that all that is left is a vacant body and no working mind. How horrendous is that? I know, as I have watched many hospice patients travel that road to emptiness, withdrawal and mental vacancy. I also watched my older sister who was a happy and capable woman, become an immobile and mentally vacant body. Her sweet disposition became two emotions – terror and crying and happy. As with many with this disease, she lost all memory of her siblings and her husband.
Most families care for their loved one with Alzheimer’s disease at home for a very long time. I have seen very elderly couples in their late eighties and nineties care for their spouse for months and years with little or no help. They become exhausted in the task and it often goes unrecognized by the family until the caregiver/spouse has a health concern or crisis of their own. Exhaustion is a common effect in the caregiver whether it is a spouse or adult child. And when you factor in the toll on the family – the toll is emotional, social and certainly financial. As the person with the dementia diagnosis progresses down the path of decline, their needs for care and safety increase to the point that they usually need to be professionally cared for in a specialty facility – a skilled nursing facility or a nursing home. Obviously, that becomes financially costly to the family members.
A number of years ago Glen Campbell let the world know of his awful diagnosis of Alzheimer’s Disease. He decided in 2012 to do one final music tour despite plenty of symptoms and challenges with his diagnosis. I think in a way it was his contribution to open acknowledgement of Alzheimer’s Disease. Glen Campbell died on August 8th this year.
So, what to do to dodge this “bullet”? The scientific world thinks there are things one can do to possibly combat Alzheimer’s Disease or perhaps at least delay its effects. Those recommendations are: remaining active by exercising at least 3 times a week, avoid smoking, get enough sleep, stay mentally engaged and socially active, stay aware of symptoms, eat a healthy diet including omega-3 and vitamin E, relax and destress and reduce alcohol intake.
Ultimately, though, the only hope for a cure is research. It is through research that the answers will be found that will wipe this awful disease from the earth – leaving only a distant memory in the minds of those who will never face Alzheimer’s Disease and the devastation it wreaks.
It is sad and frankly a bit shocking to me that we know so little about a disease that was discovered and named by Dr. Alois Alzheimer in 1906. We have known about this disease for over 100 years and still we have no cure in sight, no treatment method to hold back the effects of the devastation and no immunization to prevent it.

When two elderly neighbors, friends and people I agreed with on many social issues turned up dead in their home, it wracked the whole community. Why? – was the biggest question, and then what could we have done? Suicide at any age is fraught with questions, regrets and wishes that will never be fulfilled on the part of the friends and survivors. What this incident told me is that we hesitate to ever cross the line of stepping into one another’s intent. We fear bringing up the subject, we fear what we may hear and we fear we cannot handle the truth. I also think we just don’t want to step over that threshold of getting too close to another and perhaps not knowing what to do with the answer we might hear.
Contrary to the notion that young adult men have the highest suicide rate, senior men over the age of 85 are the highest percentages of suicides in this country. The rate for white men over age 85 is 52.3 per 100, 000. What is it about the United States that we don’t see this as a failure of our social mores? Why is senior suicide viewed as less tragic? And, of course, what can we do to turn the tide on this prevalence?
Here are my humble thoughts on this topic for the population I dearly love and am happy to be a part of.
In our culture in the United States, we tend to glorify the young and the beautiful, which frankly is not most of us. And we tend to want to isolate and not be reminded of aging in any way. And yet the over 65 portion of our population collectively have more wealth, wisdom and skills than can be imagined. What a resource we neglect to interact with!
In addition, we tend to not want to acknowledge failure or frailty including mental health issues and depression. There are several ways to look upon aging. As you might guess I choose to look at the rosier side. But realistically, aging is tough and tougher still in a culture that does not want to look at making it better. Aging includes many losses. Elderly people have generally lost their status with their retirement, often their senses are dulled or unclear yet frequently their intellect and wit are strong. They have so much to offer. A hundred years ago, retired people lived only a decade or so. Now our seniors are often living into their ninth decade. That means that potentially for one third of their lives, they have been retired, out of the social workforce and network and often with lives that feel less meaningful.
I tried retirement for three months and really felt quite lost. With retirement from a career of nursing my sense of purpose as a giver and a nurturer was gone. Some say that nurses never give up being nurturers. When I was asked, “what do you do,” I was completely stumped. So, I came out of my short retirement to consult with seniors.
One of my first clients told me his biggest concern was that he and his wife would outlive their funds. That comment really made me step back and think about the hard reality that so many face. It seems to me that our culture needs to rethink and redesign how we manage this dilemma. Why not utilize this fabulous resource of people with an on-going sense of purpose and contribution? Why not figure out ways to continue to reap the benefit of their knowledge and collective wisdom? Why not have opportunities for them to step back to less stress and responsibility to support roles that not only keep them involved but also earning an income?
As a species, we are wired to feel needed, respected and to have a purpose in life. Why not utilize that population of knowledge and competence to tutor, mentor and consult with us sharing their unique talents? Some studies have shown that interactivity of this population of seniors with school-aged children helped both populations to succeed and reduced health concerns of the seniors. What is the downside?
So moving forward perhaps, at least in our little Cache Valley, we can take some steps to reach out to seniors and to dare to risk taking a chance to help them adjust to their golden years with purpose, intent and a feeling of self worth instead of feeling like they have been put out to pasture. Maybe each of us should initiate the first step in our own way.

Just a year ago my little sister sent me an email saying she had heard a review of the book Being Mortal and that she thought I would like it. She knows what I read. I am well versed in end of life care books, such as Dying Well, How We Die, Final Gifts and The Etiquette of Illness. Not wanting to spend top price on the new book, I called my friend, Kathleen, who was visiting her daughter in Portland. I knew she was visiting Powell’s Bookstore and asked that she purchase it for me as they always offered new books at a discount for a few weeks. Mission accomplished. I started the book immediately and could not put it down. It seemed to me the summation of all that we do wrong in our Western approach to living and dying and the better way to look at aging and declining through the eyes of other cultures could only make our dying in America better. The fact is that in the last 40 or 50 years we seem to think we are immortal. It is not difficult to see why this has evolved with all of the extraordinary medical treatments; we survive awful physical problems that have now become treatable. The long-term outcome of that is that we live longer and we are much more likely to live and die with multiple chronic illnesses. So, essentially we are living much longer with potentially and often worse quality of life issues to face than ever before.
Atul Gawande’s book has made readers ponder how we face death in a culture that does not like to have that conversation. Instead we medicalize rather than humanize aging, frailty and the dying process. At times we focus more on dying and preventing dying than on living and loving what our life is at the moment or the days we have left.
Gawande is a surgeon whose parents grew up in India where the elders were brought into the home of the oldest child to live out their years. Being a surgeon, he always wanted to believe he could fix the problem and send the patient home to resume their life. When encountered with several life-altering medical experiences, he decided to refocus his approach to cure at all costs with quality of life. He came to realize that he needed to be honest with himself and his patient that he could not fix everything and some people should be sent home to enjoy and appreciate what time they had left with the best quality possible. He discusses a heart-wrenching story of a young new mother who faced aggressive cancer. On reflection he wishes he did things differently for her, her new baby and her husband. But much of his reflection is a focus on aging and deferring death. We have long avoided those discussions. In my twenty years of hospice work, I still come across families who don’t want to talk about dying with their dying family member but prefer to go on with life as usual ignoring the “elephant in the room.” More often than not it is the patient who is comfortable talking about dying but not the family, so barriers go up.
Many of my friends have read this book and some have said, “Oh it was so depressing.” I did not find it that way. I found it to be an affirmation of a belief system I have long held to be prepared to face the end of life having thought it through and made choices for care in advance. Oliver Sacks, a neurologist, scientist and well-known writer, was faced with advanced widespread cancer in his liver at the age of 81. He wrote of Gawande’s book prior to knowing of his cancer’s progression, “We have come to medicalize aging, frailty, and death, treating them as if they were just one more clinical problem to overcome.” I wondered as did others, how will Sacks face his own death? Well, he faced it with this statement, “. . . I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more . . .” Six months later he died at the age of 82.
So my point in this lengthy diatribe is not only to urge folks to talk about dying a bit more and to consider options, but to also look at our care in general of our elder population. We should perhaps look at every healthcare encounter in terms of what is the burden of the test and what is the value of the information we might gain? If the “test” or procedure will be greatly taxing to the senior and the benefit not substantial, perhaps we should forego the test. Seniors need to know that those kinds of decisions are or should be collaborative.
In one of the final statements in his book Gawande reflects, “I never expected that among the most meaningful experiences I’d have as a doctor – and, really, as a human being – would come from helping others deal with what medicine cannot do as well as what it can.” I believe that this is one of the hardest things for doctors to acknowledge is that they cannot fix or cure all things.
So, with November being a time of reflection and thanksgiving, we should better prepare ourselves to answer some of those questions for ourselves, share our thoughts with our family members and not expect to live forever.
Have a safe and warm holiday season.

For seniors living at home the biggest risk they face in looking to their futures is the risk of falling. Falls in the over 65 age group are the leading cause of fatal and non-fatal injuries. One in three adults over the age of 65 fall each year. Most falls occur within the home or in close proximity.

Why is this information important? Most seniors want to remain independent and at home for as long as possible and preferably be able to live there until their deaths. In 2013 the medical cost of the falls among seniors was 34 billion dollars. If that piece of data doesn’t get your attention, in that same year, 25,500 older adults died as a result of a fall. Falls are the common reason for brain injuries and half of those die as a result. But brain injuries are only one factor of concern. Falls are the reason for most fractures among the senior population. The most common fractures are spine, hip, forearm, leg, ankle, pelvis, upper arm and hand. All are debilitating for the senior living alone at home and threaten their desire to remain at home.

Ethnicity matters. White persons and especially women fall with greater frequency than African-American and Hispanics. Women fall more than men. However, men are at greater risk of dying from falls perhaps due to the nature of the fall, such as fall from a ladder or fall in performing a task of yard work or home repair.

Nonetheless, one fall puts us at greater risk of another and on top of that it makes us have an increased fear of falling. With that fear the tendency is to be more cautious, less active and physically active and to lose the mobility and flexibility to perform the usual tasks around the house to maintain more capability.

Fall risk increases with age as does length of stay in recovering. Those over the age of 75 years who experience a fall are more likely to be admitted to a long-term care facility for a year or more. Of all hip fractures, 95% are due to a fall. Each falls increases the risk of another. And time on the floor unable to get up also increases the tissue injury that occurred in the fall.

Falls are the biggest reason for seniors to have loss of function and often loss of independent living. In other words, falls are the biggest reason seniors cannot stay at home in their own house.

So, what is an independent senior to do?

Prevention is key and there are a lot of things to help make seniors safer than they used to be. There are also many devices to help keep seniors as independent as possible.

A home safety evaluation is the best way to get a non-biased look at safety issues. I will list some standard things to consider that I use in every home assessment. I recommend clear pathways free of clutter especially on the floor and rugs that don’t curl, slip or cause an unlevel step. I encourage regular eye exams to insure the proper eye wear and not ambulating with bifocals that cause depth misperception. Grab bars in key bathroom locations next to the tub, shower and toilet are a must as bathrooms are a risky place for wet and soapy feet. I encourage railings on both sides of stairways and especially stairs to the outside. I recommend night-lights or sensor lights for increased safety in nighttime trips to the bathroom. I also recommend the senior have an alert system that they can initiate in the event of a fall not near the telephone.

There is a Nigerian proverb “it takes a village”. It is apparently a common thought and term in many African languages and it refers to the communal nature of raising a child in many African villages. I would like to borrow and broaden that term to say something like “it takes a village to raise a person.” My reason to reference that term is that it occurs to me that we need to be more conjoined and collective in our approach to a concern that affects every person I know. In our childhood and parenthood, we have many resources available to us to help us reach the goal of a healthy and happy adult. But those resources dissolve away when our loved adult strays from our perceived norm and is diagnosed with dementia. Similar to mental illness, it is a problem we tend to hide and avoid. Most newly diagnosed persons with dementia have been showing some signs for years before. It is the current “scourge” diagnosis. The reality is that it is the disease of our future. In the upcoming years more people will have this diagnosis than any contagious illness we have ever known. Everyone has a stake in this.
So, what needs to happen? Well, lots of things as with any disease we are trying to beat back. We need many more funds to go into the study and eradication of Alzheimer’s Disease. We could have a fundraising like the very successful ALS ice bucket challenge. That effectively raised a lot of funds for a disease most people have never heard of and will never know anyone with it. In comparison, I can name a dozen friends and acquaintances, a family member, countless former patients and a flock of neighbors with nearly incapacitating dementia.
The diagnosis of dementia is horrifying for the individual. I remember when my sister called me three years ago and said, “Pat, they think I have dementia.” The panic in her voice and the devastation were audible. Now three years later she needs considerable assistance and barely knows me. The diagnosis of dementia is an albatross around the neck of the whole family. It seems like a whittling away of one’s being with the losses and the inability to hold it at bay. There are no protections and there is no cure. Nothing slows it down and nothing alters its course. As Meryl Comer relates of her physician-husband, the “scaffolding of his identity – unraveled over several years.”
Rich, poor, educated, uneducated, White, Black, or Latino, we are all at risk. However, the diagnosis for the spouse, sibling, child or friend is also devastating. The task of caregiving for someone with dementia is a labor of love and an unbelievable burden. No two days are alike and no one can prepare you for the course. The burden is immense, challenging and sometimes very lengthy. Many caregivers suffer in their own health under the burden of care for another. That is why I believe “it takes a village to raise a person through this life.”
One small way that this burden can be lightened is for accessible and affordable intermittent relief or respite for the caregiver. Most living circumstances soon become unaffordable if the course of the dementia goes on for many years. One option in many communities is the availability of adult day care. Having a safe and comfortable option for the person with dementia and for the caregiver to have a break from the continual caring is one of the best utilizations of precious money.
Cache Valley once had an adult day center that was well used and well loved. The caregivers who could still go to work and keep their loved family member at home especially appreciated it. It was a wonderful service to our community. It is perhaps one of the very best uses of funds as it prevents institutionalization, which is extremely expensive and can eventually bankrupt a family. Families with persons with a dementia diagnosis are some of the most determined and strong people I know. But they have suffered through the loss of this service being available. It is money well spent on our “village” of people.

 

In Cache Valley we have a big selection of hospice entities. Last count there were thirteen or fourteen hospices to choose from. It seems like an awful lot of hospices to serve a population of roughly 120,000 people.

When Medicare made available the services for hospice care in the early 1980’s, most participants had a cancer diagnosis. The resources used by the hospice to provide end of life care were minimal and included medications, supplies and hands on care to be able to keep people in their own homes and to die in the company of their families. The concept of hospice care was a noble thing. Certain types of people are drawn to provide that type of care but as I often say, the rewards the hospice team reaps in our interactions with hospice families is immeasurable. It takes dedication, grit and compassion.

After some years and with much public education, the Hospice Medicare benefit was enhanced to encompass more services to terminally ill with many more diagnoses. With this came greater reimbursement to provide the services. As is the case in our country of free enterprise and entrepreneurial spirit, many people decided to get into the business of hospice care. And as with any business entity, the profitability factor comes in to play.

Agencies may be a for-profit entity or a not-for-profit business. Most of the hospices in Cache Valley are for-profit entities.

Most persons on hospice have the Medicare benefit. Medicare pays all hospice agencies the exact same fee in the locale in which they are. The daily fee is expected to cover visits from the team, medications for comfort and supplies to maintain the hospice patient in their own home setting.

Hospice agencies must comply with some basic standards of care. But how the care is administered and dispersed is up to the individual hospice company. If one were to need hospice care for their loved one, there are many things to consider.

The hospice patient must have a documented illness that their physician expects to be terminal within six months time. Regular reviews of the patient’s status are required to maintain them on care. If they improve or seek curative treatment, they must be discharged from the hospice benefit.

Hospices must have a complement of services to comply with Medicare. This includes a core team of professionals comprised of a medical director, registered nurses, social workers and chaplains. Agencies are also required to have a team of trained volunteers to work with the patient. In addition and most importantly is the involvement of nurse’s aides who may be employed by the agency or contracted. They are the team member who is most intimately in contact with the hospice patient. Agencies also have other therapies depending on their size and service area including physical, occupational, speech, music and massage therapists. Each team member has a role in keeping the hospice patient comfortable and in the home setting.

It is imperative that hospices honor and respect the patient’s personal and religious beliefs.

There are some questions or concerns for the family and patient to think about when seeking hospice services. One of the main concerns is free choice of hospices. If a setting, assisted living or nursing home is requiring or recommending a certain hospice service, families should question why – as free choice as well as changing services is the option Medicare intends.

Does the hospice allow the family and patient to be involved in the plan of care?

How is it decided the frequency with which the patient will be visited by team members? Does the frequency of visits change as the patient nears death?

How involved is the patient’s primary doctor and does the doctor feel hospice care is appropriate? It is the hope of the Medicare benefit that the patient’s primary doctor remain involved in the care. If the patient is required to use the hospice medical director, families should question those services. Is the hospice medical director skilled in end of life care? Is the Medical director a local physician?

We would hope that all hospice services that bill Medicare, a benefit our seniors deserve and in which they have contributed their tax dollars, are delivered ethically and righteously and that all appropriate services are rendered in the care of our loved one.

Ask questions and do your homework when seeking health care services for the ones you love at this delicate time of their life.

· Caregiving is a role, relationship and a job. It can be very rewarding but can also be complicated, frustrating and stressful

Being very organized is very helpful
If you are caring for your parents, talk to your spouse as caregiving can encroach on your together time
Discuss with and involve your children. Listen to their concerns
Take care of your own healthcare needs

· Good communication, discussion and shared decision-making make a huge difference

Have a candid conversation with your parents or your spouse
Encourage them to be honest about their feelings and concerns

· Delaying or postponing long term and in-patient care is money saving in the long run

Adult day care may be a very viable option for social interaction and physical activity
Promising to never consider a nursing home as an option can backfire if the situation becomes unmanageable later down the road
Make the environment as safe as possible to prevent falls and injuries as falls are the number one reason for eventual placement in a care facility
Visit some facilities ahead of time so if a crisis occurs you are aware of your options

· Communication, collaboration and coordination are key to a successful caregiving partnership

Set your priorities and discuss your parent’s priorities
Be as inclusive as possible. Schedule a family meeting
Keep a large calendar in full view
Coordinate with the medical people treating your parent or spouse
Make sure you or a dependable representative accompanies your parent to each doctor’s visit

· A change in condition and change of setting can be very stressful and even traumatic

Anticipate a respite option before you need it
Be open to additional in-home assistance before it is needed
Understand that change will happen

· Advocacy for the caregiving situation is a fundamental goal for the cared for and the caregiver

Build a support network
Find someone you can confide in
Don’t be afraid to delegate tasks, jobs or care
Plan a little private alone time for yourself each day
Schedule yourself for some private active time three to four times a week
Make time to remain social and not isolated
Ensure a restful night of sleep
Keep humor in your world as it is healthier all around

As the baby Boomer population continues to age, we are faced with many choices and concerns for our own well-being. But many of us are also faced with the care of our very elderly parents. If we are not yet retired and available as a ready caregiver, we must look at options to help in that care. Caregiving of anyone is truly a noble decision. It can also be one of the hardest jobs in the world. Caregiving for an elderly parent especially one who cannot be left on his or her own can be a very exhausting task. The decisions to take on that task are not without much consternation. Many of us feel an obligation to our parents and a personal expectation to be the provider for the parent who cared for us the many years ago. But as our very elderly population lives longer and often have multiple chronic conditions, the task is complex and exhausting. In counseling families who are contemplating that task or trying to make decisions about that, one needs to have some back-up plans. For some the decision is a financial one and other types of care are not necessarily an option.
There is considerable literature on keeping the caregiver healthy. If something happens to the lone caregiver, the elder may have no other choice but institutionalization in a nursing home and that often becomes permanent. That is exceedingly expensive no matter who pays the bill and when personal funds are exhausted, the state’s Medicaid purses are often stretched beyond their limits. For this reason, culturally, we should be investing resources and energy into protecting and providing for the family caregiver to be successful. Much of the literature advises such things as taking personal time, staying social, getting rid of the guilt, eating well, getting sleep and exercise and taking breaks. One of the very best ways to be able to “take care of the caregiver” is through the option of safe and competent adult care. This offers many hours of stress free time for the caregiver and a safe and social outlet for the senior adult. If the elder person also has dementia and the accompanying safety issues, the stress is compounded even more. As a culture, we should embrace this option and make it more available and affordable. One other option is respite care where the elder can be cared for in a facility while the caregiver takes a break.

Every day we are faced with big decisions and small ones and some of us are very adept at putting them off. One that I personally care quite a lot about is a major health care decision that I believe every senior should contemplate and then document. I have seen so many circumstances of not planning and the agony a family goes through that I have made it a personal goal to bring this factor out into the open.
I believe that all of our seniors with the capacity for decision-making should act on this, put in writing and communicate what their wishes are for end of life care. It is not morbid or depressing, but rather honest and respectful to the family we leave behind. It is an act of love to your loved ones to have shared this information and in the unlikely event that some medical mishap occurs; they know what you want them to do. It is also an assurance that your autonomy will be respected.
Medical care in the United States is a bit fragmented these days with the changes to physician payment and physicians no longer have the luxury of time with patients. They have little time to have that in-depth conversation with each of their older patients.
Living wills were instituted nearly 40 years ago and 90% of people have heard of them. Seventy one percent have thought about them but only 29% have acted on living wills and accomplished their own. National Health Care Decision Day was established seven years ago to inspire, educate and empower the public and health care organizations about the importance of advance care planning. This year it is April 16th 2014. That would be a good target date for families to shoot for accomplishing this.
We are a culture of procrastinators. Just look at all the people who are getting their taxes done in the last minute or signing up for the Affordable Care on the last allowed day. The thing that is agonizing about this is just how awful it can go for both the suddenly unresponsive adult and the family member left to decide. Decisions like this have destroyed relationships and caused tremendous guilt in survivors.
My advice is to go into the website www.nhdd.org and consider the why of taking care of this. Then go on-line and pull up your state’s Advance Health Care Directive. Think about it, fill it out, talk about it with a trusted person and make and deliver copies. You do not need an attorney, however you do need a witness to your signature that should be a person who is not a relative or beneficiary. It is an act of love to your family.

According to the Merriam-Webster Dictionary, advocacy is defined as “the act or process of advocating or supporting a cause”. I believe that our seniors very much need advocacy when interacting with our healthcare system. Even an office visit to their primary care physician, can be more beneficial to the information conveyed to the physician and from the physician for the senior to take home and follow through with. There is a phenomenon called “white coat syndrome” which means an increased level of stress on the individual seeing the doctor usually reflected in a higher than usual blood pressure. I think seniors also tend to have a stress affect in which they cannot remember all the information told by the doctor. I have also seen many a visit in which the senior tells the doctor how well everything is going and forgets to make the doctor aware of recent occurrences like falls or fainting or dizziness. For this reason, I believe that with each healthcare occurrence it is beneficial to the effectiveness of the encounter to have someone with that older person to be their eyes and ears and to remind them of the things they wanted to tell the physician.
With the average face to face visit with physicians being in the 14 minute range, very few seniors will bring up concerns or issues that trouble them without some prompting of the “advocate”. The advocate could be a spouse, son or daughter, caregiver or grandchild. It is also time better spent if a short list of the senior’s concerns or questions is drafted ahead of time and brought to the appointment. This same individual can take some notes and help remember the post-appointment information such as dosage changes and follow-up. I believe 14 minute appointments are often a disservice to everyone. I think physicians feel they have scratched the surface and not taken the time and patients often feel the doctor does not have the time for their needs. Sometimes I long for “the good old days”. Additional issues can be hearing impairment such that the senior does not hear large portions of the conversation, but does not let on. So, without advocacy the appointment may have become a waste of time for all concerned.