LIFE ON THE OTHER SIDE OF CAREGIVING

May 6, 2013

May, 2013

A frequent question is “What can I expect once my caregiving role is over?” While some caregivers deal with chronic illness for a long period, others realize that their carepartner will either get better or pass on within a few months or years. What then? How to pick up with life? You may be grieving in some way about the life you once had or the activities you were able to pursue with your care partner. Loss, in some form, is usually present once caregiving is over.

The experience of being a caregiver changes each of us, so the question is, “What do I do with the learning, the experience, the awareness that Iʼve developed?” I often think of Robert Frostʼs poem, “The Road Not Taken” when asked this fundamental and emotional question. As we leave caregiving behind, the options (the roads taken and not taken) for what to do present themselves. We can look forward to a positive future or proclaim, “The best part of my live is over!” Sometimes caregivers roundly pronounce, “Well, thatʼs done. Been there, done that. Donʼt want to think about that anymore.” To place caregiving as a “that” in your life, I think is shortchanging opportunities for growth and maturity.

Furthermore, thinking like this suggests that the time was wasted and nothing was gained. My observation is that those who look forward with positive purpose always do better and reclaim their lives while those who see a pessimistic future usually get it. So each of us has some choices to make, which roads to travel. Here are a few suggestions for charting a future filled with hope.

-Take a look in the rearview mirror.

To focus on a purposeful future, identify what was learned from the caregiving experience. My huge learning was patience and flexibility; I have carried these insights forward with payoffs in how I interact with friends, family, and volunteer work. I also applied both patience and flexibility to myself as grief, so profound in the first two years after my husbandʼs death, dominated my thoughts. Being patient with myself helped so much as I gave permission to go out and have fun and not worry about keeping up with the dust in my home.

-Become a student of what’s new in your neighborhood and the world.

Often, caregivers get “cocooned” with the day to day duties and agenda of another person. The world probably changed while you were caring for another person. For example, I discovered that the public library offerings expanded and that new cruises throughout Europe were on offer!

-Continue to grieve for your loss but in a positive way.

Honor the past and pay homage to a loved one lost by referencing their gifts, deeds, and thoughts and paying them forward to help people  around you. For example, if your loved one was terrific at gardening, reference that when your church needs some new flowers by saying, “Ted usually selected tulips for the front entrance.”

-Push yourself to get out and engage the world

Learn something new and do something that might even frighten you. Think of new ways to use your gifts and skills. White water rafting, anyone?

I wish each of you a road that brightens your days and lights up your future. If you are currently caregiving, these same principles can be applied to life now and in the future. The best way to honor yourself and your loved ones is to continue to use your gifts and engage with the world!

Margery Pabst is the author of both “Enrich Your Caregiving Journey” and “Words of Care”; both books are found on Amazon.com. Watch for Margery ʼs new website coming in May at http://www.mycaregivingcoach.com. Margery hosts two radio shows monthly for eCareDiary.com, “Caregiver and Physician Conversations” and “Caregivers Speak!”. She is also eCareDiaryʼs caregiving expert.

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WHAT HAVE YOU LEARNED ABOUT YOURSELF?

April 7, 2013

April 2013

Questions about caregiving are often posed as:
-What is the role of caregiving?
-How can I learn to do the best for my loved one?
-Where can I find resources?

Let’s shift the focus and ask, “What have I learned about myself?”  Self awareness about personal strengths and weaknesses is crucial not only for the well being of our loved ones but also carries we caregivers forward to future challenges.

Here are some of my thoughts. Some familiar themes about myself persist–themes that came up in various jobs and social situations before my caregiving journey began.  One repeat learning concerns my inability, at times, to speak up for myself.  “Just say what you want” has been a comment from friends, colleagues, and from my care partners.  One of my strengths is having empathy and compassion for others, but that strength can turn into a negative if I don’t identify my needs and assert my preferences.  Caregiving can certainly turn any of us into a person who constantly defers to others,  so if you see yourself in these comments, take action to make adjustments and speak up for your needs.  Speaking up for myself is a constant challenge and can be uncomfortable for me.  Do you have trouble speaking up for yourself?  What one thing can you ask for today that lets others know about your needs?

Another familiar theme is my inability to make adjustments to a plan, particularly if it’s my plan.  Planning has always been a strength of mine,  but in a role such as caregiving, this strength can become a double edged sword.  I’ve learned to anticipate that the plan can and often does change–the doctor’s appointment, unexpected reaction to a medication, etc.  Being aware of my tendency to react unfavorably to changes in plans does help me adjust and remain flexible. In what one area do you want to increase personal awareness?

I’ve also learned that I can see humor in many things.  This is what keeps me going and keeps those around me focusing on positive ways to find respite in the everyday challenges that caregiving brings.  What personal attribute can you point to as your ‘life saver’ when crisis or everyday challenges occur?

I suggest you make a list of your learnings, one for areas where you need to adjust personal behavior and another for areas that keep you going and give respite to yourself and your care partner.

I hope that my musings have stimulated your thinking about the personal journey of self awareness–how to balance your strengths and weaknesses while caregiving.

 

Margery Pabst is the co-author of “Enrich Your Caregiving Journey” and the author of “Words of Care”.  Access these books on pivotalcrossings.com, eCareDiary.com or on Amazon.com.
Margery is eCareDiary’s caregiving expert and hosts two radio shows, “Caregivers Speak” and “Caregiver and Physician Conversations” sponsored by eCareDiary.com.

Why A Caregiving Plan for Yourself Makes Sense

January 3, 2013

January 2013

Happy New Year to everyone!!  As I contemplate the year just ended and consider 2013 with all the opportunities and struggles ahead, my thoughts turn to planning.  Back in December, I met with my accountant and attorney about fiscal (my own cliff!) and legal issues just past and on the horizon.

Why is it that we acknowledge the importance of planning for legal and fiscal issues, but that most of us don’t realize our sense of emotional comfort and peace is just if not more important?  Planning for the day when we may need to be taken care of is just as important as the will, the trust, the taxes, so today I encourage you to begin your consideration of who will be your caregivers, if required, and in what context.  All  caregivers recognize the urgency of this planning more than most, because we are living it, usually with loved ones and friends who did not plan.

As we begin the New Year of 2013, here are some considerations:

Develop a plan including the who, where, what, how, and when of your personal caregiving.

WHO:  Identify the kind of caregiver(s) you would like to have if you get sick.  For example, what skills would these people have?  Would they like reading or football games or both?  Do they like eating the same foods you do?  What about their social and spiritual interests and are they similar to yours?  What values do you have and what values would you like your caregiver(s) to have in addition to being a skilled cook or nurse?

I know that circumstances often dictate who will be the primary caregiver regardless of these questions, but when and if you can, having caregiver(s) who share your values and interests makes all the difference in the healing process.  Considering these values and interests also will help you choose additional professional and family caregivers beyond your primary caregiver.

WHERE: Identify, in priority order, where you would like to live.  Most people want to stay in their homes, but sometimes moving to a smaller place is the choice.  Consider where you want to move if your future economic or physical condition dictate that you move to a facility.  Would you want a large or small place?  Do you want to go where friends already are?  Would this place provide assisted living for you now and later when you may need more care?  What recreational, social, spiritual, and emotional values would you want fulfilled in this place?  Would you want this place to be close to family members?

WHAT:  Identify what you want your days to look and be like?  What, ideally, do you want your home, apartment, or room to look like?  What colors and decor provide emotional comfort to you?  What furniture do you want?  Do you want a telephone and/or computer in the room?  What about a television and cable channels?  What about a library or access to museums?  Do you want the space to feel inviting or not?

HOW:  How will you make decisions regarding your care?  Do you have some criteria even beyond a living will?  Do you want lots of collaboration with your caregiver(s) and medical personnel or very little?  Are you a decisive person or will you want to pursue all the options?

There are other considerations beyond what is mentioned here; however, I’m sure you get the idea.  Often, all of us make quick decisions at the last moment about these questions, often to regret them later.

Write the plan down.  The plan doesn’t need to be long, but special and personal to you.  Be sure to include your key needs and wants in writing.

Share the plan with all interested parties.  That means family and friends who may likely be future caregivers.  Also share your caregiving plan with your attorney and doctor.

Review the plan when you review other important documents.  Like your will, trust, and other critical documents, your caregiving plan may have some changes too.

Creating a caregiving plan will, like your other important documents, help you sleep better at night and provide the emotional security that is every bit as essential to your life.  Happy New Year!!!

 

Margery Pabst is eCareDiary’s caregiving expert and the host of “Caregiver and Physician Conversations” and “Caregivers Speak”, two BlogTalkRadio programs sponsored by eCareDiary.  Margery’s newest book, “Words of Care”, can be reviewed and purchased on Amazon.com.  Margery’s website is http://www.pivotalcrossings.com where you will find other helpful tools for the busy caregiver.

A Caregiver’s Recipe: Keep It Simple During The Holidays

November 28, 2012

December 2012

I believe simplicity is one of the most underrated qualities in our culture.  Complexity is often assumed to be better because somehow happier and more joyful outcomes will result. More seems to be more rather than less being more.  Take food for example.  After perusing a holiday food magazine selected at the supermarket checkout, my overall impression is that the complex recipe reigns, that a great holiday is dependent on spending hours in the kitchen.

You know the recipes, the ones with at least three fresh herbs at the end of a list of more than ten other ingredients.  It’s not just the ingredients but the straining, sifting, separating, whipping, layering included in the directions.  If you’re like me, the purchase of a relatively arcane ingredient leads to using about one teaspoon with the rest of the container left to sit undiscovered months or years later in the back of the pantry!

The holiday season complexities also extend to decorating, entertaining, traveling–we often try to squeeze it all in.  I propose we stop and take a deep breath this year and look for the simple and still rich recipes for our caregiving lives.

This year, my family’s celebration will include recipes (simple ones!) handed down from my two grandmothers, storytelling, decorating that includes a few favorite wreaths and candles, and lazy days spent just catching up and talking with loved ones not seen for awhile.

Suggestions for a simpler caregiving holiday include:

-Go for fewer decorations and seek out ones that carry memories, particularly for your care partner.

-Select recipes that have few ingredients.  Make meals a communal affair so everyone pitches in.

-Develop awareness of what you are taking on each day.  Ask questions like:

  • “How much time will be spent on the logistics of traveling?”
  • “Does the schedule include enough time for everyone to get enough rest and sleep?” –
  • “Will this plan (including meals, events, etc.) allow us the time to simply focus on one another and our family?”

-Add in complexity (like a recipe you feel you must try!) only in small amounts.

This year, I want to try a special vegetable soup that has 26 ingredients, but it will be the only complex recipe I tackle.

-Plan some of the celebration and festivity for January.  You don’t have to pack it all in during December.

I am trying to practice my own suggestions.  Today, a Monday, I am finishing up some computer work and it’s nearly 2PM.  My plan is to spend the rest of the afternoon being with those I love with no attention to a “to do” list.  My hope is that keeping it simple will enable you as caregiver to carve out memories with your care partner and your families during this holiday season.

Margery Pabst is eCareDiary’s caregiving expert and the co-author of “Enrich Your Caregiving Journey”, a book of tools and tips for the family and professional caregiver.  Her latest book to be launched soon is “Words of Care”, thoughts and writings that provide 5-10 minute suggestions and reflections for the busy caregiver.  Margery is also the host of eCareDiary’s “Caregiver and Physician Conversations” and “Caregivers Speak!”.  You can access her information at www.pivotalcrossings.com.

Caregivers in the Workplace

October 30, 2012

November 2012

Many of us are not only caregivers for a loved one but we also hold down jobs. This month’s comments are for those of you who try to maintain a work/life balance.  What proactive steps can you take to balance the responsibilities between your caregiving and work roles?

FIRST, you must consider how to communicate to your employer, especially if your situation appears to be long-term.  For example, a short-term caregiving role might be for a loved one who just had surgery but who will be up and around in a few weeks or less.  This situation may not require discussion with your employer.  However, if your situation is longer term and may become more demanding, you need to determine how to communicate it.

SECOND, communicating sooner rather than later is always the best course of action.  Don’t wait until the situation becomes worse.  Determining a course of action with your supervisor early on will establish a plan that you both can build upon as your caregiving role changes.

THIRD, identify your needs and those of your employer before you ask your supervisor for a time to talk.  Make a list, “My Caregiving Needs” and “My Work Responsibilities”.  Your list will demonstrate that you are thinking about how to manage your home and work responsibilities.  Proactive planning is usually  impressive to employers and will set a positive tone for the discussion.

CREATE a plan for taking care f your work responsibilities while caregiving.  For example, if your care partner goes to the doctor on Fridays, create a plan showing how you will continue to complete all your work despite your absence for two hours on Friday afternoon.  Be sure to state that your work responsibilities have a high priority and that you have a plan to take care of them.  Your supervisor will be happy you did and will continue to have confidence in you.

DISCUSS your caregiving responsibilities with your colleagues who may be impacted by you.  For example, if you need to arrive late by 15 minutes on Mondays, explain this to any colleague who may be affected and explain when  you will be making up the time.  Showing everyone consideration will help to create the work/life balance you want to achieve.
Margery Pabst is eCareDiary’s caregiving expert and the host of two BlogTalkRadio shows sponsored by eCareDiary:  “Caregivers Speak!” and “Caregiver and Physician Conversations”.  Margery is a speaker, facilitator and the co-author of “Enrich Your Caregiving Journey.”  Find Margery’s information at www.pivotalcrossings.com.

Art Can Be The Best Pill

October 2, 2012

October 2012

A revolution is under way as both medical professionals and families explore broader initiatives for healing.  Sometimes referred to as holistic healing, spiritual, social, and emotional dimensions of illness are being  considered in addition to the physical needs of patients and their families.

One aspect of this so-called holistic healing is the use of art, art in the broadest definition to include music, poetry, painting, photography, dance, etc. Initiatives and research are under way to discover how creativity and the arts nourish our spiritual, emotional, and social lives and how creativity can promote physical healing.

On September 20, awareness of the healing nature of the arts was increased even more at a Congressional Panel held in Washington DC.  While the theme of the panel was “Dementia and the Arts”, (September was National Alzheimer’s Awareness Month) recognition for the arts as key to the management of any disease and a general part of well being was acknowledged.  During this one day conference and exhibition, initiatives for enhancing the well being of Alzheimer’s patients and their families were presented, including dance, storytelling, poetry, songwriting, and visual arts.

So what are some options caregivers can use  for themselves, their patients, and their families?

-STORYTELLING:  This month, eCareDiary launched a storytelling page on the website.  On that page, you can read about or watch my video on how to get started with your personal and family storytelling.  Stories seal our memories  for the future and develop our family legacy.  You can also record your stories on tape or video for posterity.  Interviewing a family member (I interviewed my mother as she struggled with terminal bone cancer) restores hope and focuses attention on the highlights of a life well lived.

An opportunity to hear caregivers tell about their personal experiences with storytelling can be heard  on Tuesday, October 7 at 2pm on “Caregivers Speak!” I interviewed these caregivers at the Share The Care Conference in Orlando.

-PHOTOGRAPHY:  This month I am interviewing  Dr Jeffrey Levine, geriatrician and photographer about his work with aging and how photography enhances family stories, memoirs, and legacy.  Using photography as a tool for encouraging family support systems, particularly during illness, fosters family togetherness and purpose.  You can hear that interview on Tuesday, October 30 at 2pm Eastern on our show sponsored by eCareDiary.com, “Caregiver and Physician Conversations.” Find out how to access the show  at both eCareDiary.com or on my website at http://www.pivotalcrossings.com.

-POETRY/MUSIC/VISUAL ART:  All of these art forms  are used to stimulate memory and brain function.  Caregivers who read with their patients, listen to music, engage in drawing and painting, and visit museums report improved emotional mood, increased brain function, and enhanced well being.  The Pabst Foundation is currently engaged in an ongoing project using poetry with dementia and Alzheimer’s patients, The Alzheimer’s Poetry Project.  See http://www.pabstfoundation.org for more information.

On September 25, I interviewed Gay Hannah, the Executive Director of the National Council on Creative Aging on the “Caregiver and Physician Conversations” show.  Gay says, “Participating in the arts connects us to each other,  giving us time and space to renew ourselves and our loved ones with dementia through imagination and play.  It is through this healthy release from anxiety and worry around disease and related medical issues that we can return to finding strength and satisfaction in the pleasures of sharing joy with each other.”

Margery Pabst is eCareDiary’s caregiving expert and the co-author of “Enrich Your Caregiving Journey.”. Margery is the host of two radio shows sponsored by eCareDiary.com:  Caregivers Speak! and Caregiver and Physician Conversations. (Tuesdays at 2pm) Margery Pabst is also the Founder and President of The Pabst Foundation whose mission is to encourage innovative and interdisciplinary conversations for long term impact on community.  Access her information at www.pivotalcrossings.com or at www.pabstfoundation.org.
 

Maintaining Your Personal Dignity in the Face of Adversity

July 17, 2012

August, 2012

We’ve all been there–that sick feeling in the pit of the stomach or the overwhelming feeling of sadness and physical exhaustion made worse by events and people who have damaged our personal dignity.  What I remember from my caregiving experience:

– trying to help only to be berated for it,

– feeling that I’m not needed anymore because a sibling has taken over. and

–  wishing that someone would acknowledge my caregiving.

 

All of these situations led to a loss of personal dignity.  Was I just spinning my wheels?  Were the skills that used to support me worth nothing when I became a caregiver?

So what are some ways to maintain personal dignity in the face of caregiving duties, particularly when your situation is long term and your care partner is suffering from a chronic illness?

My first suggestion is to always have people or at least one person who helps you focus on the positive.  Also, finding situations where you can be nurtured and supported are critical.  I found that positive recharge of my batteries among a few close friends. As I think back on it, those friends were the ones who shared my values, my love of reading and the arts, and who had also experienced caregiving.

Early on, I was shy about asking them to go to a movie, to have lunch, or to just spend some time on the phone.  I guess I expected them to call me.  Once I did reach out for support, the communication became a two way situation which enabled me to retain a sense of personal dignity.  I started realizing that I was harming my personal dignity by not reaching out!

Avoiding people who concentrate on the negative is key to your personal dignity and well-being.  Such a person/people focus on the worst that could happen and fill you with stories of dreadful outcomes about their experiences.  Often, this type of person is really just trying to help, but the emphasis on the negative is not helpful, so trust your inner voice and ask yourself, “Does this person make me feel good or bad about myself and my caregiving situation?”

Also trust your “energy quotient.”  Your body as well as your mind will caution you on what to avoid and what to embrace.

My second suggestion is to engage people you trust.  Ask them, “How am I doing?”  The question is meant is to be more about you and your personal well being.  Your caregiving may be going just great, but your personal dignity and resiliency may be suffering, so asking for some feedback will provide another perspective for you.  When I asked for feedback, one of my key learnings was not to take everything too personally.  I mentioned in the beginning of this article that a sibling arrived during my caregiving and began doing some of my work.  I took it the wrong way, thinking that he or my parents thought my caregiving was not up to par.  Nothing could have been further from the truth; he was just trying to help.  What I learned was that I must be in control of my personal dignity.  What I say, think, and feel matters to my self-esteem.

A third suggestion is to speak your truth as a caregiver.  If you see something that offends you or your care partner, speak up and say that it must be changed and that you don’t approve.  Speaking your mind (tactfully) is a terrific way to demonstrate your capabilities and self worth.  You will feel the better for it as long as you ‘speak your truth’ in a positive and tactful way.

 

Margery Pabst is the co-author of “Enrich Your Caregiving Journey” and is eCareDiary’s caregiving expert.  Margery hosts two radio shows supported by eCareDiary:  “Caregiver and Physician Conversations” and “Caregivers Speak!” which air monthly as part of the “Empowering Family Caregivers” series.  Find more information at www.pivotalcrossings.com or at eCareDiary.com.

The next Caregivers Speak! BlogTalk radio show on Tuesday, August 14 (2PM Eastern) will explore the issue of “Maintaining Personal Dignity” with a caregiver panel.

Maintaining the Dignity of your Care Partner–Even in the Worst Circumstances

June 14, 2012

June, 2012

Much is written about advocating for our care partners both outside the home with medical professionals and inside the home with family and friends.  Advocating usually takes the form of speaking up on behalf of our care partners/loved ones.  As I’ve considered this topic, a key to advocacy as a best practice is to ensure that not only are we as caregivers being heard by others but also that the dignity and self-worth of our loved ones is maintained as well.  It seems to me that creating a win/win to ensure both the best care AND personal self worth of our loved ones are key to being the best caregiver advocates we can be.

‘Caregiving’ as a term can be a subtle directive that encourages many of us to think that we must GIVE CARE and that all decisions, care, opinions, etc. must come from us.  Such thinking cannot be further from the best practices of caregiving.

I’d like to offer a way to consider our advocacy that will maintain the self-worth and dignity of our care partners while ensuring that they receive accurate and excellent levels of care.  Consider these three levels of advocacy for our care partners:

1)   interactions with medical professionals,

2)   interpersonal interactions with family and friends, and

3)   situations which test our ability to make aspects of care more dignified.

When we caregivers interact with medical personnel, faith and spiritual support providers, social workers and other professionals outside the home, we need to really examine the approach we take and become more aware of how we talk with these professionals and our care partners.  For example, do we include our care partners/loved ones in the discussion and decision making about care?  Or, do we make unilateral decisions, referring to our partners as “he” or “she”?  Obviously, there are situations when our loved ones can’t speak for themselves, but to the extent we can include them in our conversations, the more we build and maintain a feeling of dignity and self worth which are key elements of healing.  To the extent we can put our loved ones “in the driver’s seat” regarding decision making, we help create a collaborative environment.  We set the pace and remind the professionals that our loved ones must be included in the conversation.

Second, we need to apply the same principles to our daily interactions with family and friends at home or play.  To exclude an ill person is to diminish even further their sense of personal capability and dignity.  Again, we set the tone and the approach when other family and friends are around.  When a family member or friend refers to the loved one as “he” or “she” or even talks as if the person isn’t around, we must step up and correct them with words/phrases like, “What do you think (name of care partner)?”  Use your body language and eye contact to directly address your care partner; your signal will provide a powerful model to everyone else.

Third, dealing with situations that have the potential to create embarrassment for your loved ones are the most challenging for maintaining dignity and self worth.  Often areas of eating, toileting, and bathing provide the greatest challenge.   What are some ways to ease these concerns?

-Identify what the person CAN DO ON THEIR OWN.

-Ask the person WHEN they would like a bath, the bed changed, etc.

-ASK the person how they want something done and PROVIDE AS MANY OPTIONS  as are physically possible.  For example, “Shall I stay with you or would you like to call me when you are finished?”  “Would you like me to help you with _____?”

-Use music or storytelling to ease the mood.

Keeping the focus on the care partner’s needs is key to their choosing what will suit them best.  When we provide opportunity for our care partner to make choices, self-worth and dignity follow.

Margery Pabst is eCareDiary’s caregiving expert and the co-author of “Enrich Your Caregiving Journey”, a book of tips of tools for the family or professional caregiver.  Margery hosts two BlogTalkRadio shows for eCareDiary:  “Caregiver and Physician Conversations” and “Caregivers Speak”.  The next Caregivers Speak! show on Tuesday, July 10 at 2PM EDT will discuss the issue of “Maintaining the Dignity of Your Care Partner” with a panel of caregivers.  You can access Margery’s information on her website at www.pivotalcrossings.com.

MY CRAZY FEELINGS: Why do I feel good and bad at the same time?

May 23, 2012

May 2012

I remember the first time I took my husband to the hospital to be admitted for pneumonia.  My feelings ran the gamut.  I felt so relieved and couldn’t quite figure out why.  My relief then gave way to a sense of guilt as I thought about not having to give him daily medications and prepare foods for his strict diet.  I was free and yet I felt badly that I was free!

Sound familiar?   I’ve since realized that similar situations occur for most caregivers.  We may feel resentment that our loved one’s illness is taking up too much time from our lives and yet, when we find someone to help us, we worry that tasks won’t get done and medications won’t be given.  It seems we just can’t enjoy the free time for ourselves.

Having two conflicting feelings bewildered me at first.  Was I the only one who felt relief?  Did I dare say out loud that I was happy to have a break?  When my loved one passed on, should I express my profound relief that the end had come after a long illness?

If these thoughts and feelings have given you sleepless nights, read on for my tips on handing what seem like irrational ways of feeling.

  • First, acknowledge to yourself that it’s natural to feel more than one emotion at a time, and that typically we humans often can feel both positive and negative feelings at once.  Think about other times in your life and during transitions when you’ve experienced a mix of feelings.

If you have children, remember when your child/children went to that first day of school or flew the nest and went to work or college?  How did you feel?  Probably a mixture of sadness and joy!   When I left home for that first job, I was excited and yet fearful about the future.  Opposite feelings are a natural part of life; however these same feelings seem more pronounced and strange when we are caregivers.

  • Second,  acknowledge your feelings to others.

Express the fact that you are feeling relieved and guilty, sad yet overjoyed at the prospect of having some free time.  “I feel so empty now that Harold has a full time nurse.  A part of me misses the daily routine and a part of me is delighted to have some time for myself.”  Practice saying your feelings to others; in most cases, your friends and family will understand you more and will confirm your concerns and triumphs.  Acknowledging your emotions to yourself and to others will help to keep you in a positive frame of mind because you aren’t pretending to be someone you are not.

  • My third recommendation is the really hard one to do.  Acknowledge to your loved one/care partner that you feel resentful, tired, frustrated, overjoyed, delighted- whatever negative and positive emotions you have.

Often our care partners can see the stress building up or relief when a transition is made.  Most of the time, they can read us very well; after all, they’ve known us awhile and see the signs, even when the signs are  subtle.  “I’m so tired from getting up several times a night that I could just scream.”  “I am so relieved that you are in this facility where we can really find the problem.”  Statements like these opened up my emotions to my loved ones; I found they often already knew how I was feeling.  However, my saying the words helped them respond to my needs even more.  An understanding is created that provides you with support from everyone, including your care partner.  It’s always amazing to me how our care partners can turn the tables and become our caregivers!!!

Margery Pabst is the co-author of “Enrich Your Caregiving Journey” and the host of eCareDiary’s new BlogTalkRadio show, “Caregivers Speak.”  On Tuesday, June 5 at 2PM, Margery and three caregiver panelists will discuss the “Importance of Keeping A Positive Mental Attitude While Caregiving.”  Margery also hosts eCareDiary’s “Caregiver and Physician Conversations” on the last Tuesday of each month at 2PM.  Look for other articles and expert advice from Margery at www.eCareDiary.com and on her website at www.pivotalcrossings.com.

The “Guilt Trip” And How To Get Over It

April 11, 2012

April 2012

One of the most common comments from caregivers is “I feel so guilty.”  As a caregiver, I feel guilt frequently.  I decided to consider why this state of guilt exists in most of us.

Here are some thoughts about our caregiving roles:

-Most of us care for someone who took care of us.  Our parents and spouses certainly did along the way, so caregivers assume that we must provide the same attention and care for them.

-If we are caring for a child, perhaps our thoughts are about how we may have caused the child to be disabled or to have a chronic disease.  What did we do wrong?  Was it our genes?  Was it something we forgot to do like not watching carefully in a dangerous situation?

-Some guilt is self-imposed and some comes from the responses of others.  We impose guilt on ourselves when we feel we’ve omitted something like not taking someone out for a meal.  Sometimes we take people’s comments the wrong way and assume they are reminding us of our shortcomings.  A statement like, “Mother knows she can always depend on me” can be taken the wrong way by a sibling who is assuming that the comment suggests he/she is undependable.

Given these common situations, how can we caregivers manage the guilt we feel in whatever form it takes?  I have three suggestions:

-First, APOLOGIZE if you said something hurtful to your care partner like, “I just answered that question, didn’t you listen?!!!”  We all says things we regret, so a simple apology will clear the air, making everyone feel better.

-Second, PLAN for your care partner’s time with others.  Find enriching opportunities that utilize the skills of other family members and friends, thus giving you time to create balance and recharge your personal batteries.  We simply cannot be there for every need all the time.  To impose that lofty goal on ourselves dooms us to a guilt ridden caregiving journey!

-Third, ACCEPT COMMUNICATION objectively rather than personally. Don’t let remarks and all the little communications hitches along the way irritate you.  Many snide remarks come from those who are just trying to make themselves feel better.  Simply assign those remarks to the “That’s Their Stuff” category.   The complaining uncle or the nosey aunt, the lazy sister in another state or the self important friend, take them for who are are.  Letting them get under your skin saps energy!

For example, brother Sam says, “Mom seems lonely.”  Your caregiving mental set may jump to the assumption that brother Sam thinks you are falling down on Mom’s care.  Sam may be trying to lay a guilt trip on you, or he may be just stating what he is observing.  Either way, take a deep breath and ask, “How can we relieve her loneliness?”  With this open-ended question, you’ve accomplished the following:

1)  You place the responsibility on more people, not just on your back.

2)  The question puts you and Sam (and perhaps other siblings) into a problem solving   mode.

3) The problem solving mode puts you into the position of actually discussing the issue rather than focusing emotion and anger on one another.

I’m a big fan of the open-ended question because you can usually accomplish these three outcomes.  Questions that result in placing responsibility on more than one person, that put you and others into problem solving, and that actually begin to solve an issue are the ones that successful caregivers use.

Margery Pabst is the co-author of Enrich Your Caregiving Journey.

She is eCareDiary’s caregiving expert and hosts the monthly show, “Caregiver and Physician Conversations”.  eCareDiary and Margery are also launching a second show, “Caregivers Speak!!” on Tuesday, May 8 at 2PM.  Also, watch for Margery’s Expert Q/A posting on the website.  You can access more information on Margery’s work at http://www.pivotalcrossings.com.