Lilly and her Mom

Caregiving…. a Servant’s Heart

Authored by Lilly Adrian, CDP, CALM, CDCM, ADC and a SURVIVING CAREGIVER!

We are all hard working Americans… well, most of us… but what does it take to have a TRUE SERVANT’S HEART? Someone who does not apply for the hardest job in AMERICA… but takes it due to the love they have for the one they serve.

It takes someone who is blinded by LOVE… resilient due to their love… and passionate about the person they love… to the point that they themselves would give their LIVES for the one they LOVE.

AND IN FACT MANY DO.

My mother loved and served with my dad as a pastor’s wife for over 50 years, working night shifts so she could have her children ready for church every Sunday morning and off to school every weekday morning, knowing that would make it easier for her husband who worked two jobs, preparing himself through schooling to become a pastor and servant himself.

Those years, she would say, were the hardest years of her life but the most fulfilling years also… ones she would never have traded.

Then came the DIAGNOISIS… of Alzheimer’s… and her TRUE Servant’s Heart kicked in as she cared for her husband for 12 of the longest years of her life.

Refusing help ‘til those last six months, as she is the ONLY one who could TRULY care for him. Her VOWS said so… ’Til Death Do Us Part… and she took them seriously, like a woman who had been taught to never give up.

She did seek out help those last six months of daddy’s life. WHY? Because she could no longer take care of herself and him too. She had worn herself down to threads and knew it was SURVIVAL TIME.

Those last six months were hard for her… but with the help her children, she was able to still care, as they cared for her and for him.

But those last four years of HER LIFE… were hard. She had taken such poor care of herself that she could no longer breathe on her own…walk on her own… and at the end….even taking care of her own ADLs was something she needed help with. Catheterized… on oxygen… sitting in a lift chair most of the time and never getting up unattended… due to her lack of ability to stand or walk on her own. Even eating was the job of her caregivers.

But EVEN then, she never complained…oh maybe if she did not have enough Cheerios in her cupboard… or if there was clutter around her lift chair where she could not find a phone number that she needed as she still made sure she contacted her sister weekly… her sister-in-law as often as possible. She always tried to talk to her children every possible chance she could get. HER SPIRT OF THAT SERVANT’S HEART NEVER LEFT HER.

What should I have done to make her life more LIVABLE, as her one of her caregivers, after she lived her life OUT for the one she loved?

The guilt I live with now as I was one of HER last caregivers… sometimes is more than I can bear.

She lived with me for two years. I worked 12-hour days. She could hardly wait for me to be home… I WAS TIRED. Was I as patient with her as I should have been?

I cooked all weekend to make sure she had meals to eat during the week… I washed…picked up meds… took her for weekend scenic drives… out to eat occasionally….watched detective movies with her… got up EVERY NIGHT at 3:00 in the morning as I heard her get up… to eat her Cheerios. I GAINED 25 pounds as I ate with her… out of stress… loneliness myself… and a deep need to be BACK IN OUR OLD WORLD.

I got up every morning early enough to make us coffee and go sit by the pool for 30 min before I would start getting ready for work.

Every six months her breathing got worse… and another hospital stay was inevitable… for two to three weeks.

Then that June she said…NO MORE…this is my last hospital stay. IF I’M GONNA DIE THEY ARE NOT GOING TO BE THE ONES TO KILL ME. Being a nurse made her a very criticizing patient.

That’s when SHE made the decision to go into Assisted Living.

I would have NEVER let her go… but knowing she made the decision made it so much easier.

That’s one thing I can be grateful for that many caregivers cannot… that decision of transition is so hard to make… giving up the total care of your loved one to someone else.

But then again… you NEVER totally give up that care.

Did I make the right decisions for her care? What could I have done differently? I worked where she lived those last two years… yet I could never spend enough time with her, according to her. She seemed to always want MORE OF ME…and now that I don’t have her to give MORE OF ME… I wish for those moments that I slipped away while she was sleeping… hoping she would not wake, knowing I had left and that she would sleep all night.

I wish I had painted her nails more…and massaged her feet….and taken her out of her room more and into the garden area. Even thought she said NO, she would have loved it.

I wish I had come a little earlier than 7:30AM so I would have had 30 more minutes with her each morning… I wish I had stayed every day longer than 7:30PM so we could have had 30 more min every day together… but I was TIRED.

I wish I had come SATURDAY AND SUNDAY instead of just one or the other… so we could have spent all weekend together. I know she was lonely…but I was TIRED.

I wish I had concentrated on preparing ALL of her meals for her…instead of just weekend meals…but with working every day…I was TIRED.

I wish I had taken her for all of her doctors appointments…but I needed my job to help support her too somewhat, so leaving work was very hard for me. I know she was scared to go alone…but the caregivers knew her well…but according to her they just didn’t LISTEN as well as I did.

I wish I had taken my grandchild to see her more…she longed for that…but B was only two and became SCARED of the way granny looked and the people that lived around her…so I didn’t push the issue. Should I have?

Such regrets we feel as a caregiver. Regret, sure, give me seconds on that one. But no more guiltCaregivers are often reluctant to express these negative feelings for fear they will be judged by others. Caregivers are usually doing the job of several people, or at least it feels like that, and sometimes it feels like we are carrying the weight of that, as well. If we could drop the load of guilt that is perhaps the heaviest weight of all, imagine how that could improve our lives!

My sweet friend Raynetta reminded me once, “as a caregiver you can take ANY TRIP YOU WANT… except for ONE…and that one is a GUILT TRIP.” Wow, such wise words. Just imagine for one second… how much better YOUR life would be and the one you were caring for would be… if you could drop the guilt that tries hard to steal that JOY of loving our loved ones the very best we can…and STILL allows us to love ourselves.