Health & Wellness

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.

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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, 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.