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.

I did it to myself, and so I better do everything I can to get out of it: Missed diagnosis of COPD

The crisis came five years ago for Jean Rommes, on a Monday morning when she had planned to go to work but wound up in the hospital, barely able to breathe. She was 59, the president of a small company in Iowa. Although she had quit smoking a decade earlier, 30 years of cigarette smoking had taken their toll.

After several days in the hospital, she was sent home tethered to an oxygen tank, with a raft of medicines and a warning: "If I didn't do something, life was going to continue to be a pretty scary experience."

Jean has chronic obstructive pulmonary disease, or C.O.P.D., a progressive illness that permanently damages he lungs and is usually caused by smoking. She has both emphysema and chronic bronchitis, as well as asthma. She had symptoms for years before receiving a correct diagnosis.

She began smoking in college in the 1960s, when she was 18. People whom she admired smoked, and it seemed cool. She smoked for 30 years.

When she quit in 1992, it was not because she thought she was ill, but because she realized that she was organizing her day around chances to smoke. But she almost certainly was ill. She was only 50, but climbing a flight of stairs left her winded. From what she found in medical dictionaries, she began to suspect she had lung disease.

By 2000 she was so short of breath that she consulted her doctor about it.

He gave her a spirometry test. In one second, healthy adults should be able to blow out 80% of the total they can exhale; her score was 34%, indicating moderate to severe lung disease.

"I don't know whether he knew," she said of her doctor. "I suspect he did, but he didn't call it emphysema. He put me on a couple of inhalers and he called it asthma. I sort of ignored the whole thing because the inhalers did make me feel better. I started to gain some weight, and things got progressively worse."

She cannot help wondering now if she could have avoided becoming so desperately ill, if she had only known sooner what a dangerous illness she had.

The turning point came in February 2003 when she tried to take a shower and found that she could not breathe. The steam all but suffocated her. She managed to drive from her home in Osceola, Iowa, to her doctor's office, struggle across the parking lot like someone climbing a mountain and collapse, gasping, onto a couch inside the clinic. Her blood oxygen was perilously low, two-thirds of normal, even when she was given oxygen. The hospital was next door, and her doctor had her admitted immediately.

She had Type 2 diabetes as well as lung disease, and her doctor told her that losing weight would help both illnesses. But she said, "He made it pretty clear that he didn't think I would or could."

Motivated by fear and anger, she began riding an exercise bike, walking on a treadmill, lifting weights at a gym and eating only 1,200 to 1,500 calories a day, mostly lean meat with plenty of vegetables and fruit.

"I came to the conclusion that if I didn't, I probably wasn't going to be around," she said. "I wasn’t ready to check out. And my husband was beginning to show the signs of Alzheimer's disease."

By December 2003, her efforts were starting to pay off. She went from needing oxygen around the clock to using it only for sleeping, and by January 2005 she no longer needed it at all. She was able to lower the dosage of her inhalers and diabetes medicines. By February 2005, she had lost 100 pounds.

The daily exercise also helped her deal with the stress of her husband's illness.

"I had no clue that exercise would do as much for ability to breathe as it did," she said, adding that it helped more than the drugs, which she described as "really pretty minimal."

"Exercise is absolutely essential, and it's essential to start it as soon as you know you have C.O.P.D.," she said.

"I will tell pretty much anybody that I smoked for 30 years, and I quit in 1992." Maybe it's why I've attacked this the way I did. OK, I did it to myself, and so I better do everything I can to get out of it. We all do things in our lives that are stupid, and then you do what you can to fix it."

Advice to former smokers: Exercise will help your lungs function better.

Browse for related stories in the index at the very bottom of this page, or read one of our COPD stories.

Thanks to Denise Grady for the source article in the Nov. 29 issue of the New York Times.

A 75-year-old male with chronic obstructive pulmonary disease: Nursing ratio

A 75-year-old male has a chronic obstructive pulmonary disease (COPD) exacerbation. He is treated with steroids, gatifloxacin and help in breathing (mechanical ventilation). An initial X-ray showed his chest was clear, but on the fifth day of ventilation he got a fever and a raised white blood cell count, indicating an infection. The diagnosis was late-onset ventilator-associated pneumonia (VAP).

This man, the subject of a case study in a medical journal, survived. But many patients who get pneumonias that are associated with long times on a ventilator, i.e., late onset ventilator associated pneumonia, do not survive.

In the Intensive Care Unit (ICU), when managers allot fewer nurses to cover patients, late-onset VAP occurs more often, according to a study by Dr. Stephane Hugonnet and others that was published in Critical Care on July 19. Dr. Hugonnet calls VAP the most frequent preventable adverse event affecting critically ill patients, and says it prolongs the length of stay by up to 50 days, lengthens the duration of mechanical ventilation by 5 to 7 days, and generates substantial extra costs, of $10,000 to $40,000 per episode.

He thinks the reason is that rushed nurses take less time to wash their hands and skip other infection control recommendations. Time constraints can increase the probability of error by creating a busy, stressful environment with distractions and interruptions, leading to low compliance with hand hygiene recommendations and isolation procedures, or inadequate care for the ventilated patient. Cross-transmission of micro-organisms from one patient or the environment to another patient, or from one body site to another in the same patient, leads to colonization and infection, he reports.

Almost a quarter of patients on ventilators in the Intensive Care Unit (ICU) got pneumonia, and most of these were late-onset.

Advice to those with a family member in the ICU: Ask the ICU Nurse Manager the nurse staffing ratio.

Read one of our tired nurse stories, or read Dr. Hugonnet’s source article.