by Ricarda Snellback Lerner 

I never saw my father in a wheelchair, or with a cane or walker.  I never saw my father with a nebulizer, or catheter bag, or a feeding tube. 

I saw my father lie in a hospital bed with an oxygen tent, but never in a wheelchair.  We had no home health care.  He died within 6 days of being admitted to the hospital, having had a massive stroke.

But for the past 40 years I've been the sole or primary caregiver for 3 different people.  First my mother, with congestive heart failure and severe depression and dementia.  This went on for more than 20 years.  Meanwhile, we had home care aides, oxygen tanks, oxygen concentrators, suctioning machines, wheelchairs, walkers, canes, diapers, pads and medications and no family or friends' support.  And I kept climbing the ladder at work until I made VP. 

Two years before my mom died, I suffered a cerebral hemorrhage.  I ended up losing my career, my savings, my home.  When she died I was very close to being on welfare and in debt to the tune of $100,000. Creditors called day and night.  I returned to college to become a gerontology counselor.  I was going to save the world, save all the families out there with chronic illnesses. 

Three years later I married for the first time - to a man much older than I was and to a man who was very depressed.  His wife had died and his adult children did not want to bother with him.  I tried to help him, practicing my gerontology counseling and ended up marrying my client. Depression and family problems continued, but depression did lessen up and we had a good 5 years until the depression returned with a bang.  The meds the psychiatrist prescribed after several hospitalizations helped immensely, but side effects made him fall. 

Three days after attending a dinner dance and having a great time, my husband fell in our front yard and suffered a broken hip! Surgery followed and 5 days later another surgery because the hip came out of place.  Soon everything (all his organs) began breaking down.  Too much anesthesia and 2 operations killed him.  Four months in the hospital, rehab and hospital.  Two days before he was to come home, he died. 

I never left his side for 4 months.  For 6 months, I was in such bad shape that all I did was stay at home. Then came an emergency D & C, then an emergency hysterectomy.  And I had no one to take care of me. Then a man I had known for 40 years phoned me at home in Ohio and asked me to come for a visit to his home in New York.  I told him I just had surgery and could not travel. 

He said "Come to New York. and I'll take care of you." We had been in love 40 years ago but for a lot of reasons and family obligations, we were never able to marry. When I was well again, I flew to New York and before the evening was over we were in love all over again and he asked me to marry him. He had a beautiful apartment overlooking the East River and I had a 7 room house in Ohio.  We decided to live in New York and merge our 2 homes into one.  There were no obstacles stopping us from a good life now.

Six weeks after our marriage (wills, power of attorney, health policies had been written), my husband was diagnosed with probable Parkinson's disease, probable Alzheimer's disease.  I had become a caregiver again!!! Seven years later, I have a 36 hour day of caregiving.  (Did you read the book?)  There's a hospital bed, a trapeze, a cane, a wheelchair, a walker, a Hoyer, cases and cases of sterile water, cases of pads, cases of sponge pads, catheter supplies, a nebulizer and numerous meds. After extensive tests at 3 of New York's best hospitals over the past 5 years, no doctor can say what exactly is wrong with my husband, except severe dementia.  Alzheimer's and Parkinson's have been ruled out. I attended a support group and told my story 6 years ago, and a member said "You aren't going to stay are you?"  Yes, I am staying.