Caregiving

Be an advocate for your aging loved one.

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If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?

In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility.  Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job.  By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.

I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests.  It’s easy to have a perhaps unwarranted laid-back attitude because:

  1. mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
  2. mom is living in a ritzy/expensive place so it must be the best option for her; and/or
  3. this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.

I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom.  Let’s take each point separately.

  1. Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one.  However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year!  There’s a reason why caregiver turnover is so high.  This job is TOUGH and the pay is unconscionably low.  A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years.  This report is worth your while to read.  Learning is power – right?
  2. Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided.  Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great.   Sometimes what I call “generic” buildings oftentimes provide as good or better care.
  3. The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care.  So a waiting list does not necessarily represent quality.

So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.

SPEAK UP.  You don’t have to be a squeaky wheel to get the grease.

  • Be persistent yet respectful.
  • Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
  • Be present: in person if you live nearby or by phone if you are a long distance family caregiver.  Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.

OBSERVE.  When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance.  How does it differ from visit to visit?  Is her room tidy, clean and uncluttered?  One way to observe staff members in action is to accompany your mom on facility outings.  Observe the staff’s interaction with the residents.  Do they speak respectfully to them?  Are they patient with them?  Do the residents enjoy their outings or do you get the impression that these outings are forced upon them?  All of these impressions are important towards discerning what goes on in your absence.

ADVOCACY RESOURCES.  Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident.  Each state in this country has a LTC Ombudsman program.  Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.

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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.

Solo Caregiving.

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My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support.  When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.

Garage Sale fundraiser for the local Alzheimer's Association.
Garage Sale fundraiser for the local Alzheimer’s Association.

CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.

Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing.  Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance.  Now is the time to be very transparent with them and tell them what you need.

Having dinner with my dad and his late-in-life Bride.

DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.

There is no shame in inviting yourself to dinner.  If these are true friends/acquaintances of yours, they will welcome you into their home.  Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis.  Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so.  Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.

My wonderful Dad, circa 1960’s, being a jokester.

ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!

I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs.  Let’s look at the difference between the following offers of assistance.

  1. “Hey Sam, call me if you ever need some help.”
  2. “Hey Sam, could you use a little extra help around the garden?  I’m all caught up with my yard work and would like to help you in any way I can.”
  3. Hey Sam, we always cook for a crowd and always have some leftovers.  I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”

In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help.  You’re basically forcing him to ask for help.  In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out.  If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night.  How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”

Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs.  Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver.  If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.

Family dynamics that hamper caregiving success

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A team is only as good as its members.  If the playbook isn’t carefully followed, success is unattainable.

The scenario for this article centers around care for Mom.  It doesn’t matter if Mom is still living at home and cared for primarily by one of her adult children OR Mom is living in a care facility receiving care for her day-to-day needs outside of the home.  Either way, the brothers and sisters of this caregiving team are in for the challenge of their lives.  What follows is a simple, yet complex, listing of destructive traits that could get in the way of the family’s caregiving goal.  All definitions are directly from the Oxford English Dictionary, 11th Edition, 2004.

  • EGO. n. a person’s sense of self-esteem or self-importance.  Brothers and sisters, please check your egos at the door.  The exercise of one’s ego is so self-involved that the input of others, most likely controlled by their own egos, clashes with an individual’s perspective.  Acknowledge that egos are front and center, but either check them at the door, or put them high up on a bookshelf to be retrieved at a more appropriate time, and work together for the common good, not one’s own good.
  • SELFISH(NESS). adj. concerned chiefly with one’s own personal profit or pleasure at the expense of consideration for others.  I’m seeing a trend here.  Ego and selfishness go hand-in-hand and truly have no place in a team dynamic.
  • COMPETITION. n. the activity or condition of competing against others.  A successful sports team does not compete against its own members – it saves that for its opponents.  Your brothers and sisters are your allies, not your opponents, so you will all benefit from considering each other as such.  You want the same thing – the best care experience for your mother – so your common goal will be more effectively reached when all of you play on and for the same team.
  • SENIOR(ITY). n. a person who is a specified number of years older than someone else.  Just because you’re older than your sister doesn’t mean your input is more valuable than hers.  Your younger siblings are just that – they’re younger, not stupid.  I know that sounds harsh but I’ve seen this time and again where siblings maintain the same perspective of their childhood sibling relationships and it becomes a barrier towards moving forward as adults.  Once you reach a certain adult age, those differences no longer exist.  It’s hard to break away from the age hierarchy paradigm, but break away you must.
  • SHARED RESPONSIBILITY.  You’ll rarely find a family that carries the caregiving burden equally.  Some members will do more than others, either by virtue of their proximity to Mom, and/or due to their abilities.  But a greater percentage of tasks does not necessarily equate to a greater percentage of input regarding Mom’s caregiving.  Arguably one could say, “You don’t care enough to help out so we don’t care about what you have to say.”  One could say that but doing so is counterproductive.

I list the above traits because they can be very destructive when complex issues of aging and caregiving come into play.  Imagine trying to come to a consensus of opinion regarding an appropriate level of care for Mom at any given time, or managing the financial dilemmas often inherent with the caregiving process; or the emotion-packed subject of end-of-life issues.  Respect for each others’ opinions will go a long way towards paving the road with fewer speed bumps.

A caveat:  I acknowledge that some family histories are far more complicated, and more dysfunctional, than others.  Because of the unhealthy years that many children have experienced growing up, far more is on the table when working with one’s siblings.  In those circumstances, a third-party unbiased counselor can be a valuable addition to the care team.

My question to you wonderful caregivers out there who have wrestled with this caregiving team challenge: how did you iron out the difficulties, or did you?

If you do not have any family members, please look at my article Solo Caregiving.

Caregiving: The Ultimate Team Sport

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What’s a pitcher without a catcher?  A quarterback without a receiver?  A point guard without a center?  Individuals – that’s what they are.  They are not a team.  Caregiving should never be an individual effort because quite frankly, one person can not do it all.

Take a deep breath; think happy thoughts; and do your best.

Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get.  For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals.  As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever.  Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor.  He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care.  Getting on the approved list might involve one or both of the following:

  • Facility Care Plan/Residential Agreement.  Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition.  There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care.  Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns.  If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
  • Power of Attorney for Health Care.  This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own.  I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.

Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.

Alzheimer’s Walking Team: myself, my hubby and my brother

Hold a family meeting – even involving those living out of town via telephone or skype – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths.  Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks.  As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load.  The good news, however, is that the GM is not alone – there are additional members of the team.

FINANCE MANAGER.  Your older sister is a finance whiz who’s very comfortable crunching numbers.  She gets to take over the day-to-day system of bill paying, investment monitoring, and the like.  You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information.

INSURANCE MANAGER.  One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare.  Congratulations, his strength will contribute greatly to the whole.  But you don’t have to work for an insurance company to excel at this task.  Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies.  The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid.  This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance.  But effective Finance & Insurance Managers can successfully get the job done.

TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month.  Terrific.

Anyone need a cab?

That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized.  Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way.  This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.

FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING.  Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road.  If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them.  My article “Family dynamics that hamper caregiving success,” addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.

A team’s success is attainable – but each member has to dedicate themselves to the task at hand  for that to happen.