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 as 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.

Dad and my brother a year after our dad's Alzheimer's diagnosis.

The long distance caregiver.

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.

Dad and I with one of his dementia unit caregivers.

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.

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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, of course controlled by their own egos, clashes with an individual’s perspective.  Acknowledge that egos are involved 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 less 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 Baby Boomers 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.

Avoiding the pitfalls of selecting Senior Housing.

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You’re patting yourself on the back, congratulating yourself for:

  • finally deciding that it’s time to move into Senior Housing; and
  • deciding which type of long-term care (LTC) option suits your needs.

Now what?  You’re scared to death because of the abhorrent negative press you’ve read regarding certain types of Senior Housing.  Good for you – you should be!  There are ways to make your selection a more trustworthy one.  What follows will hopefully weed out the bad eggs, but there is absolutely NO guarantee the decision you make is 100% sure.

WORD OF MOUTH

Chances are that those similar to you in age – your friends, work associates, neighbors – have looked into or are currently looking into Senior housing options and they can be a very worthwhile resource.  Don’t be afraid to ask them to share their experiences with you and you’ll certainly do the same with others as their needs become known to you.  Better yet – if you know of someone who already lives in a LTC facility, visit them to discern what they think about their own choice.

HOUSING SEARCH RESOURCES 

Where will your path take you?
  • Check out your state’s Aging & Disability Services Administration department (linked here is Washington State’s ADSA.)  You really can’t go wrong checking out your State’s services for the Senior population.  These resources usually have links to long-term care facility research tools, such as the Assisted Living section of my local state’s ADSA.  No doubt your State’s Aging & Disability department will have similar links.  If you’re looking for retirement communities that involve totally independent living, or a Continuing Care Retirement Community (CCRC), an all-care type of residential model mentioned in my previous blog “Selecting a Senior Housing Community”, your search will be less informational because most States do not license retirement communities.
  • STATE INSPECTION SURVEY.  All licensed facilities in the United States are inspected/surveyed every 12 – 18 months.  This survey is quite thorough and covers absolutely EVERY aspect of a facility’s operations.  When you tour a facility, always ask to look at a copy of that building’s latest State Survey.  By law they must make it available to anyone who asks.  I don’t think I would ever consider a Senior housing option without reading the building’s State Survey.  You’ll find minor or major citations which will be very telling as to how the building is run and how the Administration or Owner of the building responds to such citations.

LONG-TERM CARE OMBUDSMAN PROGRAM (LTCOP)

Every state must have a long-term care ombudsman program in place.  These programs are mandated by the Federal Older Americans Act and are intended to improve the quality of life for people who live in long-term care facilities.  A call to the LTCOP intake line in your state is a call worth making.  Let’s say you’ve narrowed down your housing search to a few options.  You ask the LTC Ombudsman’s office about the types of complaints that have been filed against those facilities and this office will provide worthwhile information to help you make your housing decisions.  The National Long-Term Care Ombudsman Center  will help you locate your local LTC Ombudsman program.

SENIOR HOUSING LOCATORS

You’ll notice that I’ve placed this type of resource at the bottom of my list.  There are numerous housing “finders” out there and they can certainly be helpful.  You tell them what you’re looking for; what area of town you prefer; what type of care you need; and what you’re willing to pay; and they’ll come up with some options for you.  Please keep in mind, however, that these senior housing finders have an inventory of housing clients that may or may not be representative of all that is out there.  They may come up with some very good options for you but their list will most likely not be an exhaustive one.

Regardless of what/who you use to locate a LTC facility, I hope you’ll go through the previous options I’ve listed above to discern the appropriateness of any facility you’re considering.  Perhaps a Senior Housing Locator has provided what appear to be some great options for you and you’ve even toured them and feel comfortable with what is offered.  Prior to making your final selection, at the very least go through your State’s Long Term Care Ombudsman to discern whether or not any recent actions or citations have been placed against that facility.  And when touring any housing location, be certain to ask for the facility’s latest State Inspection Survey so you can see what the State thinks about that facility.

My father & I on a picnic a year before he died.

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.

Three Sisters – a humorous look at memory challenges.

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Three sisters, ages 92, 94, and 96 lived together in a large, rambling house in Asheville, North Carolina.

One night, the 96-year-old was drawing a bath.  She put her foot in and paused.  She shouted to her two sisters, “Was I getting in or out of the bath?

The 94-year-old yelled back, “I don’t know.  I’ll come up and see.”
She started up the stairs and paused, “Was I going up the stairs or down?”

The 92-year-old was sitting at the kitchen table, having tea and listening to her sisters.  She shook her head and said, “I sure hope I never get that forgetful, knock on wood…”

She then shouted, “I’ll come up and help both of you as soon as I see who’s at the door.”