Alzheimer’s

Long Distance Caregiving: Part I

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Numerous authority figures are entrusted with your loved one’s care – most of them a fraction of their age.  If you can’t be a physical presence for your loved one what will you do to bridge the gap between physical absence and an effective long distance presence?

My mother and my daughter, circa 1976.

My father was diagnosed with Alzheimer’s at the age of 84 and died in 2007 at the age of 89.  By the time of his diagnosis he had been living in a Continuing Care Retirement Community (CCRC) for seven years.  His wife, my mother, died a month before they both were to move to this CCRC located in Oregon state.  My mother was truly looking forward to the move with my dad but on September 24, 1994, she was granted the wish that she had thrown into the universe many years earlier – that when her time came, she wanted to die in her sleep.  My father still moved to the Oregon CCRC because at the age of 77, he knew he still had a valid reason to move there.  Both he and mom didn’t want to be a burden to us three children, so moving into a retirement community that would meet all the needs of his aging body and mind was dad’s gift to us.

Dad, myself, and his wife Barbara on his 87th birthday.

A few years after my mother’s death, dad married a resident of the CCRC and they had a wonderful late-in-life marriage.  Dad’s wife, Barbara, died from complications of Parkinson’s in 2003 so once again, dad became a widower, but this time his biggest challenge was that he was in the early stages of Alzheimer’s disease.  He was still able to live semi-independently in an assisted living apartment at the complex and he was able to perform his activities of daily living (ADLs.)  Of us three adult children, the job of being dad’s caregiving team leader quite naturally fell to me.  I had worked in the senior care industry for several years so I was quite familiar with caregiving lingo and body frailties, not the least of which was Alzheimer’s and other dementia.

Dining room at my father's facility.

Initially, the miles that separated us wasn’t all that challenging.  He was still active, was fully capable of getting himself up in the morning, taking his medications, getting to the dining room, etc.  Us children would call dad frequently – and he still had the ability to call us – and we continued our visits throughout the year and although his dementia was obvious to us, we knew he was in good hands and that he was functioning quite well.  The staff was very attentive to him and if they had concerns, as his health care representative and financial power of attorney, they kept me abreast of the latest, the greatest, and the ever-increasing not-so-greatest.

The not-so-greatest happened one frightful evening.  Dad called me telling me that he felt very agitated and he couldn’t stop walking around his apartment; he couldn’t settle down; he didn’t know what was going on.  I asked him if he had recently taken any medication and he replied, “Just some cough syrup.”  “How much did you take?”  “I don’t know.”  So while I had my father on my home phone line, I called the front desk of the facility on my cell phone and told them that my father was having an emergency in apartment #94 and a nurse needed to get there immediately.  I kept my dad on the phone and told him that a nurse was on the way to see him and that he would be taken care of very soon.  The nurse arrived quickly, and the emergency was averted.

Bottom line?  We now knew that dad was no longer capable of managing his own medications.  He took way too much cough syrup that evening and it caused his heart to race, resulting in extreme agitation.  This precipitating event was the start of his noticeable decline and medication management became the first ADL for which my dad needed assistance.

The above example barely scratches the surface of what many of you are dealing with.  Your long distance eyes and ears seem thoroughly ineffective and you’re concerned about your loved one’s well-being.  There is hope for the long distance caregiver.  It’s not the same as being there, but this hope somewhat bridges the long distance caregiving gap.  Part II of this article, published December 4, 2011, addresses some practical steps you can take to help in your caregiving journey.

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Denial: Roadblock to better health and better care.

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STATEMENT:  Carol’s having a little problem with her memory.
Initially this might be an accurate statement.  Two years later, it’s a euphemism that doesn’t benefit anyone, the least of which is Carol.

Imagine denying a person’s cancer diagnosis.  There’s no need to treat it.  I just have an uncontrolled division of abnormal cells in my body.  It’s not that bad.  It’s early in the diagnosis anyway and I’m not even experiencing any major symptoms.  I’ll do something about it when it really gets bad.  Ill-advised, right?  Most people would not follow that path.  But Alzheimer’s disease, and other dementia, are no less serious.  As a matter of fact, cancer isn’t always fatal, but Alzheimer’s is.  There is no cure and no potential for one at this time.

Most people would spring into action upon receiving a cancer diagnosis: learning as much as possible about it; taking measures to curtail  the cancer’s effects on their lives.  The sooner one does something about it, the better the chances of successful treatment.  For some reason, when a person receives an Alzheimer’s diagnosis there’s a self-inflicted stigma attached to it; as if the afflicted person brought the condition on themselves.  This is an unfortunate perception and one that should be put to rest.  Whereas clinical depression or mental illness used to be a taboo subject, those conditions are now more readily accepted in the public eye.  Alzheimer’s must be brought out into the open, especially as it affects you or a loved one.

THREE MAJOR REASONS WHY ONE SHOULD ACT ON AN ALZHEIMER’S DIAGNOSIS:

  • The window of opportunity to start early drug therapy can be a very narrow one.

The time to seek medical assistance is when symptoms become fairly consistent and more than just a “senior moment.”  A thorough medical exam should be conducted to rule out any cause other than dementia.  Some medical conditions and/or medication usage can mimic cognitive decline.  All the more reason to act early to rule out what might be a readily fixable temporary condition.

If after the thorough medical exam a cognitive workup is warranted, you’ll have a defined cognitive baseline and can start treatments and/or make adjustments in the household that will minimize the disease’s impact on your lives.  Now you’re in the driver’s seat, regaining some amount of control over the disease.

  • Those close to you need to be informed.

As mentioned in an earlier post, “Caregiving: The Ultimate Team Sport” (article located in the “Caregiving” tab) you can’t assemble a care team if you’re ignoring the needs and challenges facing you and your loved one.  You’ll be amazed at the relief you’ll feel knowing that you’re not battling this disease on your own.  Let your family and close friends know early on what you need from them.  Partner with them to become a formidable force upon which you can rely.  You need support and it’s available from several resources.

  • Join a local Alzheimer’s Association support group.

The Alzheimer’s Association lists support groups in most geographical regions that should prove extremely helpful to you.  Type in your zip code in the “Find Us Anywhere” upper right area of their website and you’ll be connected with the Chapter located nearest to you.  Within that local Chapter you’ll then be able to search for a support group by typing in your city, county,  or zip code.   You’ll find groups for family members who are attempting to support their loved one who has received a dementia diagnosis.  You might also find support groups for patients who are in the earliest stages of their illness.  Both groups can do much towards providing you with confidence and hope when none can be found.  These groups become a practical resource into which you can tap to benefit from others’ experiences in managing the disease.  If by chance there is no nearby Alzheimer’s Association Chapter, check with your local hospitals, community colleges, senior centers, and the like as they oftentimes hold groups that are facilitated by trained professionals.  These alternative groups are very adequate options when no other groups are available.

If you or a loved one has received an Alzheimer’s/dementia diagnosis, you’ve just entered one of the most difficult chapters of your life.  You deserve all the support and medical attention you can get.  Ignoring the condition doesn’t make it any less real so please take the steps needed to manage this stage of your life effectively.

The next article in this “Understanding Alzheimer’s & other dementia” series is : “Driving with dementia: the dangers of denial.”

Understanding Alzheimer’s & other dementia

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There are diagnostic tools in place that try to make sense of the symptoms of Alzheimer’s and other dementia; some are conclusive, while others are simply an educated guess because knowledge of this disease is evolving day by day in the medical and scientific fields.  And for certain, no two people with the disease have the same manifestation thereof.

Whether or not an actual diagnosis is presented, you as family members, or perhaps as the patient, are struggling with this new reality and are attempting to carry on as normally as possible.

In the days ahead I am going to submit four articles addressing some of the challenges inherent with this disease.  I am not an expert – I have no PhDs and no medical degrees – but what I do offer is advice gleaned from my own practical experience and from that of those with whom I have been fortunate to be acquainted.

The four articles will be as follows:

  1. Denial: Roadblock to better health and better care.
  2. Driving with dementia: the dangers of denial.
  3. Long distance caregiving (provided in two parts.)
  4. Preserving your loved one’s dignity.
My wonderful brother Don, and our dad in June 2005, a year after dad's Alzheimer's diagnosis.

As Charles Darwin once said: “It is not the strongest of the species that survive, nor the most intelligent.  It is the one that is the most adaptable to change.”

I hope that ALL of us will have something to offer as these four articles are presented.  I covet your input and hope that you feel free to provide it.

Transportation challenges with Mom and Dad.

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Because of your flexible work schedule, you are the designated driver when it comes to taking Mom and/or Dad to doctor appointments.  Well, the older your parents get, the more feeble their bodies, and the more potential for aggravating factors such as cognitive decline.  What should have been a 2-hour outing has become an all-day event.

Remember the good ol'days? Neither do I.

I’m quite certain that many of you reading this article have struggled in your efforts to drive Mom or Dad to their many doctor appointments.  Getting Dad into the car is one thing, but getting him out?  My goodness – through no fault of his own, he’s forgotten the process and you don’t have the strength to lift him out.  With Dad’s cognitive decline, his understanding of what it means to sit or stand on command has decreased.  The ol’ “Ally Oop!’ maneuver or the “1-2-3 Stand!” command just won’t work any more.  What’s a person to do when you are not able to exert the strength to facilitate such an action on your father’s behalf?

Dad and I on a picnic, Spring 2005.

When I visited my father in the long-term care (LTC) facility in which he lived, my goal was to get him out of the facility as frequently as possible.  I took him on picnics, on walks around a park’s perimeter, up and down the aisles of a supermarket – anything to provide a change of scenery for him.

As my father’s dementia increased, however, these outings became less and less practicable.  I was not blessed with a strong back so my attempts to lift him out of the car or onto a park bench were met with horrendous failure.  I grieved the cessation of these activities but I just couldn’t manage my father’s body any more.  And not being able to go on these outings really curtailed the enjoyment of our visits together.

Had I lived in the same town as my father, another person could have accompanied me who was capable of assisting with the transfer of my father in and out of the vehicle.  Unfortunately, my father lived in Southern Oregon and I live in the Seattle, Washington area so calling upon a friend to go along on these outings was not an option for me.  If you, however, live near your loved one, do yourself, and your loved one, a favor by bringing another family member or a friend who has the ability to assist with the mechanics of transporting Dad on outings.  Not only will the physical assistance help, but you’ll have someone else with whom to visit when the conversation with Mom or Dad lags due to cognitive decline – or hearing difficulties.

Another benefit of having an additional person with you is that you are introducing your friend to the unavoidable process of aging.  This may sound like a negative benefit, but truly, it is not.  You will open your friend’s eyes to the future that awaits us all while also providing him with a lesson on how to enhance the life of someone whose world has been drastically reduced in size.

See?  It’s a win-win-win situation!  You receive the help you need, your parent gets a change of scenery, and your friend learns a valuable lesson.

I want to encourage you to check into local resources that provide suggestions on how to be the best caregiver you can be.  For example, your local chapter of the Alzheimer’s Association is a very valuable resource. They have numerous articles within their website and a 24-hour Helpline 1-800-272-3900 to ease you through this process.  There’s one thing on which all of us caregivers can agree – we can’t do it all by ourselves.  Reach out to receive the assistance that you so richly deserve, and that others are willing to provide.

Senior Health Specialists? Geriatricians? Where are you?

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The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.

Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health.  “What about geriatrics?” I ask them.  “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!”  They don’t buy it, especially since Geriatricians are  one of the lowest paid medical specialties amongst the medical community.

Square Dancing class at my town's Senior Center.

Ugh!  Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us?  Not very many according to the linked article above.  According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older.  No wonder people can’t find a doctor who specializes in Senior Health!  I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients.   Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia –  as they do their patients in their 20’s thru 70’s.  That just won’t cut it.

Older patients have more complex conditions – and more of them.  If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment.  “What can you expect at your age Mrs. Jones?  Be glad that you’ve lived this long!”  I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.

My wonderful Dad, pre-Alzheimer's, on my wedding day.

Think about it my fellow Baby Boomers.  Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing?  I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment.  The vulnerable adults among us might not realize that they have choices.   They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives.  Who loses in that equation?  We all do.  If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?

Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us.  What are your thoughts about this glut of Senior Health professionals?  How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?

When your loved one with Alzheimer’s no longer recognizes you.

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Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you.  As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room.  Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you?  Why are you here?”

You can’t imagine this scenario unless, of course, it’s happened to you.  I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.

Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church!  Kind of funny, right?  But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.

My dad's final resting place - one month after my last visit.

I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.”  Needless to say a) I’m his daughter; and b) my name is Irene.  My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.

Did it feel weird for him to call me a name not mine?  You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first.  Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer.  What I would have given for many more opportunities to have passed off as his friend Jim.  It was not to be.

The loss we experience with non-recognition.  I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history.  No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique.  Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same.  Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive.  That’s a difficult pill to swallow to be sure.  There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.

I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive.  A caregiver can’t take your place; a well-intentioned volunteer can’t take your place.  Only you can transmit the familial love that will make a difference in your loved one’s life.

Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life.  If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.

Caregiver Guilt

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Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.

The local caregiver.

Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.

Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.

At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.

Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.

Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life.  No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.

The long-distance caregiver.

One of many walks my father and I took around his facility

My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.

I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience.  I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.

As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be.  Cut yourself some slack and don’t be so hard on yourself.

Do your best – that’s all that is required.