Why do I feel guilty….caregiver guilt?

You became a caregiver to give your loved-one unconditional love, support, and quality care within the comforts of home.  Your daily devotion enables them to live a more meaningful, joyful life.  You absorb ALL of the stress from the current complex situation.  The mental and physical exhaustion is depleting your own health, but you still smile.  Socializing is limited, but isolation is in surplus.  Why do caregivers expose themselves to such a stressful, unpredictable environment?  We care about the welfare of others and believe our participation in their lives will create nurturing relationships.  We give hope to an otherwise hopeless situation.  Providing an ailing loved-one with a fulfilled life is rewarding, but do we care too much?  Is there such a thing as caring too much?

We caregivers have very nurturing, caring, independent mentalities.  These mind-sets wreak havoc on our health and create unsatisfactory care environments.  Caregiving is mentally and physically draining. Most of us have suffered from caregiver stress and burnout.  It’s an emotional roller-coaster!  What emotions surface while caregiving?  Anger, sorrow, happiness, love, fear, and surprise are just a few emotions encountered by caregivers. The most mentally exhausting emotion during my caregiving journey was guilt.  I was devoting my life to the happiness and well-being of a loved-one.  Why did I feel guilty?

After her second stroke, my grandmother received all nutrition and hydration through a feeding tube.  She couldn’t eat or drink by mouth, only via peg-tube.  How could I possibly eat anything in front of this wonderful lady?  I felt guilty eating because she wasn’t able to indulge in the foods she once found so delicious.  I ate many meals at the kitchen counter, in a location not visible to her baby blue eyes.

My grandmother was left bed-bound after suffering two strokes between the ages of 73-78.  She was unable to eat, stand, or complete any daily tasks. She was completely dependent on me….for EVERYTHING.  This once independent woman was now dependent on an 18 year old!  The irony, in previous years I was her dependent!  Again, guilt surfaces and shows its ugly face.  My mind is overwhelmed with WHY, WHY, WHY?

  • Why did this healthy woman have multiple strokes? 
  • Why is this master of culinary arts unable to eat the food she loves?
  • Why did this kind, sweet, and giving lady get such a “raw deal” in life?

I felt guilty because I was healthy.

Heart failure ended my grandmother’s life.  As a caregiver for an elderly loved-one, I knew my responsibilities would end, but not exactly when or how.  It’s frightening trying to be prepared for the unexpected.  When she passed I was overwhelmed with guilt. Again, my mind was flooded with questions. 

  • What did I do wrong?  She was fine last night when I put her into bed.
  • Could I have prevented this?
  • Maybe I should have done this instead of that?
  • Did I overlook some detail that caused this?
  • Did my grandmom die because of something I did or missed?

Caregiver guilt exists during and after caregiving.  Because of faithful devotion to helping others, we caregivers create an unhealthy emotional environment for ourselves.  We can’t accept certain terms and outcomes.  Our mind is geared for success not failure.  Please share this post to prepare other caregivers for their emotional but rewarding journey.  Thank you and good luck! 

How to Help a Caregiver

We caregivers are experts at keeping a “happy” face, even when times lack happiness and joy.  Our constant smiles and understanding give the impression everything’s always OK.  True feelings are pushed aside for the benefit of the patient.  We never ask for help because caregiving duties are solely our responsibility.  However, there are times when we need help, but don’t voice our feelings.

When asked if he/she needs help, a caregiver will often respond, “No thank you.  I have everything under control.  I appreciate the offer.”  How can you help a caregiver that refuses assistance?  Try indirect help.  Provide items or services that make their caregiving duties easier.

  1. Provide encouragement in the form of a card or casual conversation.  Show appreciation for their devotion.
  2. Caregiving is costly especially when living on a limited income.  Provide a gift card that can be used for everyday expenses.
  3. Most caregivers have very limited time for errands.  Volunteer to grocery shop or pick up medications.
  4. Balancing family and caregiving is difficult.  Offer free childcare services to the caregiver.

Directly assisting a caregiver in their own environment can be difficult.  Most have a set daily schedule.  Any deviation from this schedule can cause unwanted stress.  How can you directly help a caregiver without interfering with their daily schedule?  

  1. Prepare meals for both the patient and caregiver.  Deliver meals a few times per week.  When preparing meals abide by proper diet restrictions.
  2. Depending on the patient’s medical condition, homecare can involve massive amounts of laundry daily.  Volunteer to pick up and drop off laundry during the week.
  3. Offer transportation for medical appointments.  “Free” hours allow the caregiver to take a break and catch up with daily tasks.
  4. Provide RESPITE CARE.  Allowing the caregiver a short-term break from their daily monotonous schedule is beneficial.  The caregiver is able to enjoy activities outside of their duties, enabling them to de-stress and recharge.  A healthy caregiver can consistently provide quality care to the patient.

Caregivers can be stubborn.  This stubbornness will eventually lead to stress and burnout.  As a third-party, you can indirectly and directly assist the caregiving process by providing your time and services.  Don’t take “NO” for an answer.  Work behind-the-scenes and provide deserved support.  Thank you and good luck!

Respite care? Yes, please!

Whether you chose to be a caregiver or caregiving chose you, you’re now responsible for the well-being of another individual.  Physical, mental, medical, and financial responsibilities are included in daily caregiving.  One must assess both physical and mental states and address their effect on the patient’s health.  Medications must be altered and administered per the request of the attending physician.  Monthly bills and long-term finances must be managed in order to compile sufficient funds for care.  These are just SOME of the daily responsibilities encountered by caregivers.  The unpredictability of caring for an ailing loved-one causes a stress-filled environment.  Combining ongoing responsibilities with unpredictable daily outcomes leads to caregiver stress and eventual burnoutHow can you avoid this stress?  Two words….RESPITE CARE.

Respite care is a short-term break for caregivers.  It allows time to de-stress and recharge.  You’re able to go shopping, take a nap, grab lunch, go on a mini vacation, or catch a movie at the local theatre.  It’s easy to forget yourself when caring for a loved-one.  Caregivers can’t become overwhelmed by their full-time duties.  Respite care helps release any physical or mental tension that has accumulated while caregiving.  These small breaks enable you to return refreshed and more focused.

It’s important to have a stable support system while caregiving.  Ideally, respite care would be provided daily.  However, finding willing relatives with similar schedules can be difficult.  Finding a trustworthy homecare agency is equally difficult.  Trying to coordinate family schedules and locating GOOD care is stressful.  Caregivers become deterred and opt for no support system.  I was this caregiver.  Taking full responsibility for an ailing loved-one and refusing breaks is a recipe for disaster.  You’ll become overwhelmed and eventually suffer from burnout.  Learn from my mistakes.

Choosing to become a caregiver is a noble decision.  But sometimes we don’t have a choice and caregiving chooses us.  Whatever the circumstances, try to instate a reliable support system.  Voice your opinions to your family and describe the importance of respite care.  If you don’t mention it, who will?  As a caregiver, we take complete responsibility for our patient and forget OUR daily needs.  If trustworthy friends and relatives offer you a break, TAKE IT!  De-stress and recharge so you can successfully care for your loved-one.

Let me know how your caregiving journey is progressing by leaving a comment.  As always, thank you for reading and take care!

‘Tis the CAREgiving Season: The holiday/caregiving balance.

I love the holidays!  Decorations, glowing fireplaces, winter wonderlands, Bing Crosby, and gift-giving.  Long chats with family of days gone-by and sounds of children laughing while opening gifts.  But, the holidays can also be a stressful period.  From long lines at the checkout counter and limited holiday budgets to delayed flights and burnt cookies….it’s not all holiday cheer.  Now, add caring for an ailing loved-one to the seasonal stressor list!  How can you de-stress, be a nurturing caregiver, AND enjoy holiday cheer? Maybe I can provide useful advice and keep your holidays merry and bright.

1.)  Exercise

Don’t neglect yourself.  Caregiving is demanding and time-consuming.  Take care of yourself so you can take care of others.  Exercise is easily neglected by NON-caregivers during the holidays.  Caregivers are no exception.  However, they tend to neglect themselves because of constant dedication to an ailing loved one….not for numerous holiday house parties.  Allow 30 minutes a day for de-stressing exercises.  I prefer yoga or pilates.  Both are mind and body exercises focusing on breathing and elongating muscles.  If you enjoy a more intense workout, try this 20 minute full-body at-home workout.  De-stressing and high-intensity workouts aid your focus and concentration.  After a long day of balancing caregiving duties, baking cookies, and gift wrapping, a mind and body cleanse is welcomed!

2.)  Embrace the Situation

Caregiving is positive not negative.  The amount of joy you bring to the patient’s life is immeasurable.  Embrace your current situation and enjoy time spent in the company of your loved-one.  Realize the gift of giving not receiving.  You give happiness to an individual who may have been hopeless without your unselfish devotion.  Making the best of a difficult situation benefits all involved.  The patient doesn’t feel like a burden and the caregiver feels appreciated!

3.)  Throw a Party

Holidays bring to mind thoughts of parties and family get-togethers.  Relatives reminiscing and laughing about their unique seasonal experiences.  However, because of a demanding schedule and lack of respite care, caregivers are often excluded from these holiday activities.  Bring the holiday cheer to you and throw a memorable party.  My grandmother and I loved having a small number of guests over on Christmas Eve.  It gives you and your loved-one an opportunity to socialize and enjoy the meaning of the holidays….togetherness.  Nothing beats a good party, so turn the music up and put on your dancing shoes!

4.)  Decorate

We’re all aware of our situations and the constant stress engulfing our lives.  Caring for an ailing loved-one can make the holidays depressing.  This may be his last Thanksgiving….She may not see the New Year.  Yes, the holidays can give you a heavy heart.  But, try not to dwell on the what-if’s and focus on the here-and-now.  I’ve found that decorating for the holidays lifts spirits and makes days more enjoyable.  Engage your patient in the festivities.  My grandmother loved handing me the decorations for our Christmas tree.  The joy and happiness seen on her face when the tree was finally lit is a memory I will forever cherish.  We turned a difficult situation into happy memories!

Caregiving brought new meaning to my holidays.  I was able to embrace togetherness and enjoy the small moments with my grandmother.  We often miss the joy and seasonal spirit of the holidays because of our fast-paced lifestyles.  Caring for my grandmother allowed me to slow down and appreciate the gifts around me.  Hopefully my caregiving tips will help you minimize stress so you can enjoy the holidays.  After all, you’re entitled to a little holiday cheer too!  Please share!  Take care and thank you for reading!

A Day in My Life as a Caregiver

10:00 PM….I transfer my grandmother from wheelchair to bed via hoyer lift and begin our nightly routine.  Undress, bathe, dress, dental care, administer medication, get comfy, and hope for the best.  “Good night, grandmom.  Try to get some sleep….morning comes early.”  I turn off the lights, kiss her on the cheek, and grab any available blanket.  I fall into my bed….the sofa next to my grandmother’s home hospital bed.  Thoughts of tomorrow wander through my mind before finally closing my eyes.

12:00 AM….I hear the sheets rustling on my grandmother’s air mattress.  She can’t sleep….the cramps in her legs are excruciating.  “No problem grandmom.  I will put you in your recliner.”  I walk across the living room and retrieve her hoyer lift.  The hoyer lift mat is strategically placed…I begin to lift her from bed.  And, incontinence strikes!  It isn’t her fault that bending motions cause her to urinate.  “No problem grandmom.  I will get you washed-up and changed into clean clothes.”

12:45 AM….Bathed, dressed, and two transfers later, she is in her beloved recliner.  The leg cramps are still painful….the reclined position was no help.  “No problem grandmom.  Let me massage your legs and see if that relieves the pain.”  She nods.

2:00 AM….The pain seems to be subsiding a little.  Grandmom wants to go to bed.  “Sounds good Grandmom.  Let me get your hoyer lift.”  Recliner to wheelchair, wheelchair to bed, the hoyer lift mat is removed….another successful transfer.  And, incontinence strikes! “Ok grandmom.  Let’s get you bathed, changed, and comfy.”

2:30 AM….“Goodnight grandmom.  See you in the morning.”  But it is already morning!  I fall into bed hoping this time it will last.

6:30 AM….My alarm clocks sounds.  I quietly leave the comfortable sofa and tip-toe upstairs.  A quick change into workout clothes and my morning workout routine begins. These 30 minutes of freedom are frequently interrupted by my wandering mind….I better check on grandmom and make sure she’s alright.  Running up and down stairs is excellent cardio!

7:00 AM….Going downstairs, I’m met with grandmom’s bright eyes….MY 30 MINUTES of the day are over.  “Good morning grandmom.  Ready to get dressed?”  And so begins our early morning routine.  Undress, bathe, dress, dental care, administer medications, transfer into wheelchair.  The day has begun.

12:30 PM….By now, my grandmother has been transferred 3 times.  Incontinence never fails to burden each transfer.  Why so many transfers?  She must be repositioned every 1-2 hours in order to prevent skin breakdown.  It’s her favorite time of day….the daytime soap operas are on CBS!  We sit together and watch the drama surrounding TV families and try to forget the drama here at home.

5:00 PM….Three transfers later and it’s dinner time.  I eat standing up in the kitchen because I choose not to eat in front of my grandmother….she is fed through a feeding tube.  Guilt surrounds me during each meal.  The woman who taught me how to cook is unable to eat.  Why is life so unfair?

6:30 PM….Grandmom and I retreat to our favorite room….the four season room at the front of the house.  We watch nature from the surrounding windows and talk of days gone by.  She laughs at my stories of younger siblings.  I laugh at her facial expressions to the town gossip.  I would give anything to have these moments back.

8:30 PM….Grandmom chooses her favorite record from the collection.  We dance/roll around the 1st floor of our home without a care in the world.  Right now nobody is sick or ailing….all is right in the world.

9:30 PM….“Welp, it’s that time again.  Time to get ready for bed.”  She smiles and yawns.  We begin our nightly routine.  “Goodnight, grandmom.  Sleep tight.”  I kiss her on the cheek and fall onto my welcoming sofa.  I stare at the ceiling and pray she wakes up in the morning.  

Caregiving never stops.  It’s a physically demanding job with little rest.  Your eyes may be closed but your mind is constantly working.  Care for yourself so you can care for others.  Thank you and GOOD LUCK!  

Tips on being a caregiver AND keeping your sanity!

By now most of you know my story….30-something woman, B.S. degree in Chemistry, full-time caregiver for 11 years.  How did I manage to successfully care for my grandmother and keep my sanity during the entire process?  It wasn’t easy.  I applied the same trial and error mentality I had used in my Chemistry courses to create a caregiving strategy.  The following day-to-day tips will help you create a balance between your caregiving duties and personal life.  Everyone needs balance!

1.)  Create a Routine

Although each day as a caregiver has unexpected twists, try to create a routine that’s beneficial to you and your loved-one.  An environment becomes less stressful when those involved know what to expect.  Feed meals and give medications at specified times each day.  Try following an effective sleep schedule.  A customized sleep schedule is vital in avoiding caregiver stress and burnout!

2.)  Make Time for Fun Activities

My grandmother was house-bound, so we spent A LOT of time inside the same four walls.  Planning fun activities enabled us to laugh and be active while being limited to the home.  Those activities included baking cookies, watching her favorite television shows, dancing or rolling (she was in a wheelchair) around to her favorite music, going outside in the warmer months to plant flowers and mulch the flower beds.  These little things kept her happy and me sane!

3.)  Remember Yourself

When caring for an ailing loved-one, it’s easy to forget yourself.  Your most important concern is the well-being of your patient.  But, try to dedicate some time to your own personal life.  An unhealthy caregiver is not beneficial to themselves or the patient.  Allow 30 minutes of YOU-TIME a day.  These 30 minutes may be available early in the morning, before your loved-one wakes or during your patient’s afternoon nap.  Whenever you can sneak a little time for yourself, DO IT!

4.)  Be Happy

Caregiving is a stressful situation and if given the opportunity your loved-one nor you would choose this life path.  Whatever the circumstance, your loved-one is dependent upon you for their well-being.  Never make them feel like a burden.  No matter how stressful the situation or lifestyle becomes, try to keep a smiling face.  It provides your loved-one with security and reassurance.

5.)  Ask For Help

Don’t be afraid to ask for help!  Short-term breaks can alleviate a lot of stress.  If given the opportunity, ask someone to relieve you from your caregiving duties.  Take an extended lunch break or arrange a date night with the hubby.  It sounds small, but those few hours will make the coming days SO much easier.

Caregiving is a stressful but rewarding experience.  As a caregiver you have the ability to create an amazing bond with your patient.  I’m so glad I chose to be my grandmother’s caregiver!  We created an unbreakable bond filled with happy memories.  GOOD LUCK!

Caregiver stress….YES it’s real!

You have a B.S. in Chemistry….what do you know about caregiver stress?  A lot more than you think.  If you’ve had the time to read my others posts, you realize I’m a CHEM enthusiast.  Five grueling years of mathematics and chemistry courses to garner my degree and academic distinction amongst peers.

It was at the beginning of these five years that my caregiving journey began. My grandmother had a stroke when I first entered college….I was 18 years old.  The stroke left her with right-side paralysis and speaking difficulties.  My family and I were faced with a decision….who will care for her?  My older brother was working full-time and my younger brother was still in high school.  Then there was me….the college bound Jersey girl with big Chemistry dreams.  Who says the middle child isn’t the best child?  Faced with the dilemma of nursing home or homecare, I spent many days in a daze thinking about the future.  What’s more important, the happiness of my grandmother or my career path? Hands down….the happiness of my grandmother.  So, in 2004 my grandmother and I embarked on a memorable 11 year journey.

As I said earlier, I was 18 years old when my caregiving journey began and my grandmother was 73.  How was I going to convince this, up until now, extremely independent woman that I was capable of caring for her during her time of need?  My grandmother’s thoughts were written all over her face….I’m going to be dependent on this teenage girl, who barely knows how to drive or cook?  Yes.

There we were, two women separated by decades, expected to get along and balance life.  Easier said than done.  Although I chose to care for my grandmother, I didn’t want to delay my education.  So, I decided to balance caregiving and college.  It was difficult, but doable!  Besides, the life skills I was learning through my Chemistry course work were coming in pretty handy at home.  My grandmother’s recovery was slow, but steady.  She never recovered from the paralysis, but was successful in overcoming her eating and speech difficulties.

Fast forward 5 years….2009.  I just graduated college with my degree in Chemistry and WHAM, grandmom had another stroke!  Not again.  This stroke left her completely dependent on me.  Because of the seriousness of her condition, I wouldn’t be able to work and I WASN’T putting her into a healthcare facility.  I became my grandmother’s 24-hour caregiver.  From feeding tubes to tracheostomies….we covered it all!  I should have majored in healthcare!

From 2009 until her death in 2015, I cared full-time for my grandmother.  It was during these 5-6 years I suffered from caregiver stress.  When you say you’re a caregiver, people jump to the conclusion that you don’t work, stay at home, eat bon-bon’s, and watch television all day.  These people couldn’t be more wrong!  Caregiving is a full-time job with a lot of overtime.  You sleep when the patient sleeps.  Caregivers are at the mercy of the patient’s schedule.  Adapting to this schedule is difficult and can’t be achieved overnight.  Realistically, you may never adapt to the schedule….you just go with the flow.  That flow involves many sleepless nights and hours of direct contact healthcare.  No sleep and hours of helping the patient causes mental and physical exhaustion.  There’s no break from these relentless hours and no one to relieve you from your duties.  It’s just you and your patient….just me and grandmom!

Days turned into nights and nights into days, but one thing stayed constant, my devotion to my grandmother.  Just when I thought I could no longer deal with the stress of caregiving, there she was smiling and nodding, letting me know how grateful she was for my presence.

Don’t let caregiver stress deter you from caring for your loved-one.  Caregiving is HARD, but with proper knowledge and resources you can avoid stress and burnout.  Thank you for reading and take care!