Lessons Learned As A Care Giver

Care giving for my mom contributed to my poor health.  I don't know how it happened, how I fell out of the habit of eating well and exercising.

I cooked every day for my mom when she was living at home with me; making food that would help give her more good days, using food as medicine.  It worked.

Everyone in my house felt better when I was cooking every day.  It was stressful for me, trying to make food that everyone would eat.  Often I found myself preparing 2 or 3 different dinners in order to satisfy everyone's palate.  The preparing of vegetables, the cooking and the cleaning, consumed a good part of my day.  Some days, I didn't feel like cooking.  I forced myself.

I compromised my own health to try and make everyone happy.

You know what happened?

No one was happy, not even me!

The holidays brought "Wooo Hooo Time!"  We drank and ate the American diet.  It was the big last hurrah before I became physically ill.

The stress from care giving is real.  It is a silent killer.  Care Givers, we are in automatic pilot when we are in the midst of the "doing."  We are constantly in reactive mode.  Ready to jump at any time, day or night.  Rarely do we sleep; one ear is always open.   The stress I experienced was so intense that I could feel my inner self shaking; it became a "normal" feeling.

From my experience, we care givers forget about ourselves.  Folks tell us, "take care of yourself."  But no one tells us how or comes forward to carry some of the burden so we CAN take care of ourselves.

I don't know how I could have cared better for myself with my circumstances.  I feel many care givers who are in the thick of caring for a loved one have high stress too and are lost.  I don't have a solution to offer.  Unfortunately, based on my personal experiences, no one cares about the care giver, not family, not doctors ... no one.  It is lonely and difficult to cope with the burden of being a care giver for someone who is terminally ill.

Nursing home wait lists do not exist.  You may be told that you are on a wait list but when you call to see if there's a bed available, the same answer is parroted,  "No, sorry, no bed available."

All nursing homes are alike.

Just because we place our loved one in a facility doesn't mean our care giving duties are over.  It's important to stay involved with the care being provided.  Creating a happy environment for our loved ones takes work, it requires everyone to communicate.

I spent 7 months at the nursing home; every day I visited.  At the beginning of my mom's stay, I was at the nursing home both day and night.  My mission was to educate folks on Lewy Bodies Dementia and show them techniques on how to communicate with my mom to ease her agitation.  It was a struggle. I did not give up.

Fortunately, I was heard.  I wrote a lot of letters.  Changes occurred.  The nurses who are part of my mom's care team are phenomenal.   We communicate.

I am grateful for Mom's nursing home.  Unable to visit Mom for 10 days, the staff at the facility stepped up their game.  Mom was okay, she was not agitated; thanks to the homeopathic remedies she is given every day.  She lost about 7 pounds while I was sick. I couldn't make and bring her sandwiches.  The facility gave it a good effort, they made her sandwiches that she didn't like.

Mom has declined since I got sick.  She always seems to fall asleep when I visit these days.  She can't walk as far as she once was able to walk, her legs are sore.  She doesn't really recognize me; it makes me sad.  She does recognize my voice when I call out to her when I see her, "Hi Ma!"  I exclaim in a happy voice.  "Where are you?"  She replies with eyes closed as I am standing in front of her.

As for me, I am going to live.  I finally decided to see an MD to get myself checked since being in the hospital.  Not sure where to turn, I visited the only medical doctor on this planet that I trust... my mom's doctor.  I saw him yesterday and he told me that I am on the right track.

I've been using food as medicine on myself.  I feel better.  I am choosing to keep my gall bladder and doing everything that I can to solve my digestion issues.  Acupuncture, Reiki and Massage Therapy are helping me to heal and release the stress that I had built up over so many years as my mom's care giver.

I have learned how important the liver and gall bladder are to good health.

I have given up coffee, alcohol, dairy and all gluten.  I am done eating processed foods, nor do I eat out in restaurants.

The pain in my right shoulder is gone.  I am sleeping at night again.  No more night sweats and hot flashes.  I have lost 26 pounds since I got out of the hospital.  I feel better.  My cloths fit again.  I am on the mend.

If I had this to do over again, I would not waste my time visiting nursing homes and getting on a wait list.  Wait lists do not exists; not when the home realizes the patient has Lewy Bodies Dementia.  I would visit homes that have beds available and pick one on the spot.  I have learned that all facilities are the same, what makes the difference is the patients advocate and family visiting their loved one once they are placed.

The false hope of a bed opening "soon" was torture.  I waited a long time.  The waiting was hard and made more difficult by family that didn't understand the burden I was carrying alone.  It was hard to forgive, but I have forgiven everyone. Not sure if I will be forgiven but at this point in my life, I don't care, the ball is out of my court.  I can't control how anyone in my family reacts to the tragedy of our mom's terminal illness or me.  All I can do is take care of me the best that I know how because this journey with my mom is not over yet. Mom still needs me.