Surviving the Demands of Caregiving

Patient Expert

Tomorrow is a pivotal day.  My mom* will be released from the hospital.  Either she will go to a rehabilitation facility for three weeks, or she will come home. Neither my father nor my mother want her to go anywhere but home.  I am hoping and praying that the doctors stick to their original assessment.  They believe she needs to be in a rehabilitation facility before she returns to our home where she has lived with my father, my husband and I for the past 19 years.

My father is 88 years old and he is a dialysis patient.  He cannot drive at the moment, so I am taking him to the dialysis center three days a week.  My mother is 80.  She had an electrolyte issue that almost took her life.  She is now well enough to leave the hospital, but she is weak. My folks have lived with us since 1997.  We built our house that year.  We included a separate living room, bedroom and bathroom in our floor plan.  That living area is what they call their "apartment."

I, like many of you, have two autoimmune diseases:  Sero-negative Rheumatoid Arthritis, and Secondary Sjogren's.  My Sjogren's is flaring at the moment.  I look as though someone popped me in the eye with a fist.  I'm fairly certain my flare is due to lack of sleep and stress.

Tomorrow I have an appointment for my monthly Actemra injection.  My father wanted to know when I would be through so that I could drive him to Columbia to pick up my mother when she is released.  I was a bit stunned.  My infusions make me very tired for four days, but it is worth it.  Actemra cuts my fatigue level by 50 percent once it "kicks in."  I call it my "Go Juice."

Needless to say, I will not be picking up my mother from the hospital.  If she is released to our home, my husband will drive to the hospital an hour away and pick her up.  We are both hoping she is released to the rehabilitation center.

My mom's mother had Alzheimer's disease, and my mom is exhibiting signs of the same affliction.  I came home one day to find my kitchen and dining room full of the smell of propane.  My mother and father were sitting in their living room on the other side of the house oblivious to the propane building in the main part of our home.  My mother had not shut off the stove properly.  This was a dangerous situation.  I shut off the stove, opened doors, and waited for the propane to dissipate.

If mom is released to a rehab facility, she will be given physical therapy.  She will also be assessed for dementia and depression.  She was started on an anti-depressant in the hospital after she was transferred to a medical floor from ICU.

The current situation is going to call for some major adjustments.  I will be looking into outside resources to help me manage the care my folks require.  I am embarking on a new journey.  I will share it with you as it unfolds before me.

  • My mom is actually my step mother who has been married to my father for almost 60 years.

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