All-Inclusive Care for the Elderly: I was my Mom's PACE Program

Roberta Robinson's story:

I grew up in West Roxbury, Mass., married, had children and relocated to Pelham, New Hampshire.  I was a Paralegal and commuted to Boston for 11 years.

Meanwhile my mother was aging in place, and as her health began to fail her needs began to increase so I managed her home care from 60 miles away, making frequent trips to West Roxbury to make sure everything was going smoothly and that she was getting what she needed.   One day I received an internal message that I should keep myself fluid and that I would be out of wherever I was and into her house. 

And that was exactly what happened.

I found it necessary to move back to West Roxbury, however, not yet into her home as I wanted her to stay as independent as possible.  Then it happened….in one week, we had four emergencies…...the last finding her upside down on the couch with her feet on the back of the couch and her head hanging to the floor. It was then apparent that I needed to take the next step and move in with her.  

She was in her late 80’s and got chilled easily and kept the house like a sauna.  I was in my menopausal state and was melting so I became the cellar dweller.  

At this time, I had a full-time job with City of Boston Commission on the Affairs of the Elderly. My mother was, apparently, in her death process in the West Roxbury area (who knew?  There was no one to guide me through this process) and my daughter was in her marriage process in New Hampshire.  I was so stressed I thought I would pass before my mother did.  It was a slow, subtle process of about 5 years.  Every year she had an incident which brought her to the hospital, rehab and then home.  The first year I was advised by the case manager at the hospital that it was the beginning of the end and so I was on my guard….for four more years.  It was the 5^th year that she never made it home.  I called her the Energizer Bunny.

At the end, it was like a switch had been flipped; she was incontinent, and couldn't care for herself. I had to clean up -day and night and then go to work the next day.  I was doing it all.

There's such a burden to caregiving!  No one knows what it's like until they’ve done it themselves.  Kind of like walking a mile in an Indian’s shoes…as the expression goes.

I had aides (certified nursing assistants) to help - I called them my angels.  I cooked for them all, and gave them gold for Christmas. 

 I so appreciated them and couldn’t have done it without them!

My mother had Diabetes.  She was a little Italian Mom.  I'd cook healthy meals, and then she'd add more starch to everything, which, in turn, caused her sugar level to skyrocket.  She wanted to stay home; that was her biggest desire.  She had Macular Degeneration [a type of vision loss], Congestive Heart Failure, Emphysema  [Chronic Obstructive Pulmonary (lung) Disease], Spinal Stenosis [abnormal narrowing of the spinal canal], Osteoporosis [reduced bone mineral density], and Frozen Shoulder [bone]. 

The world of Elder Services is an incredible maze.  I was trying to figure out what was going one with her health, trying to educate myself on services that were available and trying to get the best services for her that I could get.  There was not one person to outline this information for me and I felt like I was in a bumper car, getting bashed around.

Roberta's Advice for seniors in poor health: Coordinate their health care and plug them into life.  Get them connected to a community, whether it's faith-based, at the adult day health center, the housing community, or something else; it doesn't matter which one.   We need each other! 

Isolation is the worst enemy for seniors.  

Roberta Robinson is now the Director for Geriatric Outreach and Marketing for the PACE program (Program for All Inclusive Care for the Elderly), and the Geriatric Division at Cambridge Health Alliance. 

She is a patient advocate in the best sense of the word.

Read a story about a compassionate home care provider, and learn about the PACE program.  Thanks to Roberta for sharing her story.

Go for it, I say: A loving companion to a husband with dementia

My 79-year-old husband, the love of my life, is having an "affair" with a young single woman named Jenn. He and I fell in love more than half a century ago and have lived together for 22 years, but I have no regrets about the liaison. Go for it, I say. Be my guest.

She's focused, patient, relaxed. These are prime qualifications for my husband's companion, ever since he fell from a sleeping loft four yeas ago and suffered a traumatic brain injury. He was catapulted into a state resembling Alzheimer's Disease, left unable to remember anything that happened from then on or to find his way home from across the street.

Drugs are sometimes prescribed for the typical symptoms of frontal lobe brain injury of agitation, cursing (disinhibition), and combativeness that greet a new companion. But these drugs do nothing to soothe his agitation, and can also produce terrible side effects. Worse, recent studies find that they work no better than placebos in the elderly.

The only reliable treatment for agitation like his is patience, calm, and understanding. Instead of regarding my husband's comments as incoherent rants, as others do, she sees in his dementia a kind of courage: a willingness to call the emperor naked.

Then perhaps it should not have surprised me that before the end of the second week, when other caregivers would just be starting to earn his trust, she reported that he seemed to believe they were having an affair. She realized what was on his mind when he started speaking of his guilt over their "secret."

Not that he ever makes sexual advances or overtures toward her. She's assured me of tat, and I believe her. He loves me more than ever, now that he's dependent. Besides, I'm sure that he, like me, has never been unfaithful.

It's just that without short-term memory to provide context, the events of daily life must seem incomprehensible or absurd, but being human, he can't stop trying to make sense of them anyway.

Still unaware four years later that anything is wrong with him, how should he explain Jenn’s constant presence?

Now that my husband's days are spent in the presence of an attractive like-minded young woman who holds his hand wherever they go and acts like a soul mate, what better explanation can there be than that they're a couple?

Advice to spouses of elderly people with dementia: Do your best to find a loving companion for them.

Read another Alzheimer's story.

Thanks to Alix Kates Shulman for the source article in today's New York Times.

You’ve got to get them home too: An activist patient advocate for children

In 1978, Julia Mikol was born, with severe combined immunodeficiency, which required her to live in a bubble—a completely sterile environment. When she was three months old she had a bone marrow transplant, which gave her a functioning immune system, but left her unable to breathe on her own. She spent the next two years in the Intensive Care Unit at Memorial Sloan-Kettering Hospital in New York City.

Her mother Margaret moved into the hospital to be with her. Because of the huge hospital bills - $350,000 a year – the Mikols exhausted their medical insurance and had to rely on Medicaid. Though Medicaid would pay the huge hospital bills, its rules initially forbade reimbursing the Mikols for caring for Julia at home much less expensively, at about $50,000 a year.

But after a long bureaucratic struggle, the Mikols became the first parents in New York, and only the second family in the nation, to benefit from the rules of a new federal program that allows Medicaid payment for home care for a child like Julia on life support. "The process transformed my personality," said Margaret. "I had been shy and timid, and I became brassy and obnoxious. I changed into a beast to protect my child."

Julia’s condition worsened as she got older. At age eight, she refused a recommended heart and lung transplant, and her parents reluctantly agreed. Before she died, Julia asked her mother to promise to help other children: "You got me home. You’ve got to get them home too."

Sick Kids Need Involved People is the fulfillment of that promise. The organization, with a shoestring budget, has helped 7,000 families deal with their children’s life support, cancer, HIV/AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, autism, and other conditions. Margaret and her staff help parents navigate the hospital, insurance and Medicaid systems, and assist with school and housing issues, and advise parents on dealing with the sick child’s healthy siblings.

Margaret hopes one day to build a clinically staffed residential community.

Advice: Forward this to your friends with hospitalized children.

Read another of our hero stories, or read Caroline Kennedy’s source story in the June 4 issue of Time magazine.