Alzheimer’s

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?

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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.

Selecting a Senior housing community – easy for some, not for the rest of us.

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Even if you think you will never move into a Senior housing facility you should at least do some research so that in an emergent situation, you’ll be well-enough informed to start moving forward with a plan.  This is not the time to be making snap decisions.  Your well-being, or that of a loved one, deserves more attention than that.  Making an advanced decision, and thinking ahead regarding future living circumstances, will afford you the opportunity to make a decision that you want, not what others have decided for you.  What follows may be too basic for those who are already familiar with Senior housing options, but for many, this blog entry will serve as a first step primer towards getting ones’ feet wet.

INDEPENDENT LIVING – sometimes called After 55 Housing.

These complexes are designed for adults who want an independent lifestyle in which they can relinquish yardwork and house maintenance tasks to someone else.  Now you’re talking!  If the independent complex has a common dining room they will either provide meals in a restaurant setting (ordering off the menu) and/or buffet-style selections.  Depending upon the particular independent community you’re considering, other amenities such as housekeeping, transportation and on and off-site activities may also be available to its residents.  It’s important to know that although these communities may offer wellness programs in which you can become involved, e.g. exercise or nutrition classes, there are typically no care options offered unless the community is licensed as a residential care facility for the elderly.

ASSISTED LIVING.

This category of facility promotes independence while also offering personal assistance for specific care needs such as bathing & toileting, dressing, walking assistance, and/or medication assistance.  These needs are called Activities of Daily Living (ADLs).  Assisted living communities may be a stand-alone building or an extension of an independent residential community.  If an assisted living facility is also licensed to provide dementia/memory care, a resident could readily move from general assisted living care to dementia care in the same facility.

GROUP HOME/ADULT FAMILY HOME (AFH)

An Adult Family Home is typically a single family home with a State-imposed maximum allowable number of residents – in Washington State, this number is six.  These residences offer assistance with ADLs.  This is a desirable option for those looking for a residential situation that is more home-like than facility-like.  Many adult family homes also provide specialized care for those with dementia.

ALZHEIMER’S/DEMENTIA CARE.

These facilities provide all the expected assisted living services plus specialized services that meet the needs of the memory impaired adult and is usually always a secured unit to protect a resident who might be a wandering risk.  By secured, I mean that in order to exit to a public hallway or common area, such as a lobby, a person would need to punch a code into a keypad that one with dementia would most likely not be able to navigate.  A secure dementia care unit can exist as a stand-alone building or can be found within an assisted living complex, a nursing home complex, or a continuing care retirement community.

NURSING HOME/SKILLED NURSING FACILITY/REHABILITATION FACILITY.

This facility provides 24-hour medical care on a short-term or long-term basis.  Additionally, rehabilitation programs are offered.  If someone living in an assisted living community has orthopedic surgery, he would probably undergo a certain amount of rehabilitation at a nursing home and then return to his previous residential situation.  A nursing home can sometimes become a permanent care option for those requiring a higher level of care.  Since assisted living and dementia care facilities have certain limits on the level of care they can provide, a nursing home may be necessary in order to receive the advanced care needed by a resident.

CONTINUING CARE RETIREMENT COMMUNITY (CCRC)

A CCRC has all levels of Senior living – therefore it’s usually quite expensive: independent, assisted, dementia care and nursing home care.  The benefit of a Continuing Care Retirement Community is that you can age in place regardless of your growing medical or cognitive needs.  This type of community exists on a larger campus that truly does provide an entire spectrum of care.  You can move into a CCRC totally independent – without any care needs whatsoever – and gradually move through the campus property without leaving your friends and without greatly changing your surroundings, thus assuring a continuum of experience for many years to come.

Housing for Seniors is addressed in the attached Federal Seniors Resource website that provides an extensive list of pertinent resources.  I hope you’ll find it helpful – not just for senior housing information but for many topics about which you may have an interest.

My wonderful dad and I taking a stroll in 2006.

What challenges have you faced – or what concerns do you have about either your future or the future of a loved one who might need Senior housing?  Let’s talk about it – let us hope that what each of us contributes benefits those tuning into this blog.