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By Micki LaVres By Micki LaVres

F

or 18 years I tried – unsuccessfully – to get Frank to the dentist for a cleaning. He felt that cleaning his teeth was a paltry undertaking when you considered the significance of his bigger problem, being paralyzed from the chest down. Only after suffering for several days with a tooth ache did he finally allow me to make an appointment, but under one condition. The dentist would have to treat him in his wheelchair without being transferred to the exam chair. The Yellow Book saved the day and led us to Dr. Bob who was ready and willing to accommodate the special needs of my somewhat stubborn husband.

The culprit tooth was painlessly removed after several shots of novocaine. We made a follow up appointment and prepared to leave. Little did we know the fun was about to begin. Frank uses an electric wheelchair with a sip-n-puff control system. He sips or puffs into an air tube straw that essentially “drives” the chair; hard sip to go in reverse, hard puff to go forward, soft sip to go left, soft puff to go right. (You can imagine the result with a bout of hiccups!) Well, the novocaine had done its job. His mouth – so numb you could painlessly pull a tooth – was also too numb to feel the air tube straw that controls the chair.

The big day arrived and we packed up for our trip to the dentist. I say packed up because any excursion with Frank Not a problem. I could drive for him. I flipped on the attendant control and carefully navigated him through is a major undertaking; but that’s another story. the exam room, down the hallway, and out the front door. It was a beautiful sunny day in the middle of June and our spirits were high. The office was easy to Once outside, I noticed a glitch. The chair was not locate but parking very limited. The only public parking responding properly. I had to push and steer with both had an underground entrance with a clearance too hands on the handlebars. At the same time, I had to keep pressure on the attendant toggle switch located eight low for our van. inches away. In theory this would work fine, if I had been We decided to take a chance and parked in a lot across born with fingers like ET. the street, despite signs warning that violators would be towed. Once parked and unloaded we walked two blocks I pushed Frank and his 250 pound wheelchair with all to the office, thankful for the lovely weather. my strength as we crossed the intersection and started up the incline of the sidewalk. The beautiful sunny day The building was completely accessible and, as Dr. Bob had turned hot and humid, 92 degrees without a trace of promised, Frank did not have to leave his wheelchair. shade between us and our van.

2 TODAY’S CAREGIVER MAGAZINE • CAREGIVER.COM

Falling in the Autumn of YourLife By Erika Hoffman, Staff Writer

Some of these advertisements seem so overly acted that kids chuckle when they view them, but falling is no laughing matter for the elderly. It can mean the beginning of the end. To avoid falling must be a paramount goal of all seniors. And their caregivers. Why do the elderly fall and what medical preventions should be taken? After all, it’s not easy to put Humpty-Dumpty together again. Better to keep him in one piece by not letting him topple! In the July 17 issue of The New England Journal of Medicine, Dr. Mary E. Tinetti and several other medical doctors and Public Health researchers present their findings on their study about reducing injuries from falls for those

I noticed a few cars slowing, the occupants looking in As we neared the parking lot I spotted our van. Hooray, it our direction as they passed. I heard a beep-beep from hadn’t been towed. one car. Someone waved from another. Then, just as suddenly as it started, the rain stopped and the shining sun returned to a clear blue sky. The sensation had returned to Frank’s mouth enough for him to puff his way forward and steer for himself. Our adventure had come to a pleasant end. We continued to our van with a sigh of relief, a prayer of thanks and a little Teaberry Shuffle.

I am a mother, homemaker, and full-time caregiver to my husband who sustained a spinal cord injury in 1990 and was paralyzed from the chest down. We share a 40-acre farm in northwest Missouri with two horses, three dogs, seven cats and my parents who live next door. Living with disability has forced us to deal with depression, overcome obstacles, accept the circumstances, learn to laugh, be grateful for our blessings, and anticipate the future. I would like to give a message of hope to others in my writing.

TODAY’S CAREGIVER MAGAZINE • CAREGIVER.COM 3

FOCUS ON Personal Emergency TECHOLOGY Response Systems

“Help! Help! I’ve fallen and I can’t get up!” How often have we seen that commercial depicting the struggling senior reaching out for help? The ad promotes a panic button that will alert someone to call Emergency Services. Appearing on TV, Dr. Koop, the renowned Surgeon General, endorses wearing an alert button so that seniors can continue to live independently despite falls or other medical emergencies.

I was giving myself a private pep talk when suddenly I Only when two very sweet ladies actually stopped felt the distinctive sensation of an ill-timed hot flash. and asked if we needed help, did I realize how utterly ridiculous we must have looked. Of course I declined Any woman who’s been there knows exactly what I’m their assistance, assuring them that we were fine and had talking about. (You guys, and more fortunate ladies, everything under control. (The truth: I was ready to jump imagine wearing a down jacket, mittens and polar boots in Frank’s lap and drive the chair myself.) – in the Sahara.) I pictured myself passing out from heat stroke, my pinky finger caught on the attendant control I thought things could get no more absurd, but they did. with Frank dragging me slowly up the sidewalk. Without warning, every puffy white cloud in the sky turned gloomy gray and buckets of rain came pouring In my exhaustion, I stopped pushing. down. Within seconds we were drenched. I must admit the rain was refreshing, so I whispered a half“I have to stop and rest,” I told Frank. hearted prayer of thanks to God for helping me out with that hot flash. Still, I couldn’t help wondering how the My husband – the eternal optimist – had what he thought rain would affect the electric units on Frank’s wheelchair. was a brilliant idea. His mouth was too numb to puff, but he might be able to sip, which would move the chair “Can you go any faster?” I asked. in reverse. I agreed without hesitation, swinging the chair around so fast the Lindy Hoppers would have been proud. Frank nodded his head and with another sip we were in second gear. I had to pick up the pace while moving in My husband, the mechanical wizard was correct again reverse – a little hop, then a skip. and with a simple sip, the chair began moving slowly in reverse. I was able to steer from behind with little effort My fancy footwork reminded me of the Clark’s Teaberry and Frank was delighted that he could help. gum commercial. Flashback to 1968: Herb Albert and the Tijuana Brass are playing that cute jingle. Could I We continued moving backwards slowly up the sidewalk remember the steps to “The Teaberry Shuffle”? I bet that as I turned my head from left to right looking behind me would stop some traffic. Fortunately my grown-up brain for obstacles in our path. Keep in mind we were on a kicked in: “Micki, you’re 50 years old, not 10! fairly busy downtown street after 4:00 pm with traffic I resisted the nostalgic impulse and tried to act like picking up as people headed home. a big girl.

over the age of 65. “Effect of Dissemination of Evidence in Reducing Injuries from Falls” explains the methods, results, and conclusions of their study in which they compared two geographic regions of Connecticut, which were similar in socio-economic status, race, educations, and sex. In the region where they intervened, they disseminated information about the preventions of falls to 212 primary care offices, 133 outpatient rehabilitation facilities, 26 home care agencies, 7 acute care hospitals and emergency departments and 41 senior centers. The other region called “usual care region” did not receive their input. Dr. Tinetti’s “intervention region” received information on strategies for preventing falls such as medication reduction, management of postural hypotension, treatment for vision, assessment of foot problems, hazard reduction and strength training for balance and gait. They determined the occurrences of serious fallrelated injuries and use of medical services by the CHIME database, i.e. Connecticut Health Information Management. Its service receives data from all acute care

Before the study began, the serious fall-related injuries per 1,000 persons aged 70 or older were 31.2 in the “usual care” area and 31.9 in the “intervention” area. However, the rate dropped to 28.6 in the intervention area during the study whilein the usual-care region the rate stayed close to the same—31.4 So, a nine percent difference occurred in the part of the state where the primary care professionals received the information on how to minimize serious falls in the elderly.

As caregivers, we must remember our responsibility to protect our elderly charges from preventable, injurious falls the same as we guard our infants from treacherous tumbles. To serve and protect and not let down our elders—that is our mission. To stumble, to trip, to drop to the ground and get up again and carry on is the stuff of kids’ play and movies. In real life, a descent to the floor can have horrible consequences for the older person and must be safeguarded against as is humanly possible.

Even three years after the study concluded and one year after the program’s evaluation, rates of seniors’ fallrelated injuries per 1,000 person-years were 28.6 in the “intervention” area as opposed to 30.9 in the “care as usual” area. Also, in the “intervention region,” services related to falls were nine percent lower than the “usual care” region and the rate of fall-related care of medical services, 11 percent lower. Because of an estimated 1800 fewer emergency department visits in the “intervention region,” the study’s proponents state $21 million was saved. They base this number on an estimated cost of $12,000 per event.

Because three of 10 adults over the age of 70 fall each year, the problem is a common one. Because one in 10 suffers a broken bone or head injury, the problem is a serious one. Ninety percent of broken hips are caused by falls. A fall’s aftermath can lead to problems with mundane functions. Therefore, it is imperative to prevent falls, and Dr. Tinetti’s study shows it can be done.

Falls take a toll, not only on the injured’s body and spirit, but also on the wallet. What advice can today‘s caregiver glean from this study? First, in reference to an elder’s balance, gait and strength training, there are some simple steps a caregiver can take to reduce the chance of a fall for the elderly person. Check the senior’s walking. Can he or she stand steady on one foot for five seconds? Is the person steady when getting up from a chair and does he/she sit down in a chair without plopping down? Observe the elderly person while he walks. Is he walking in a straight path? Are his turns steady? Check to see if the swing foot passes the stable foot by a foot’s length. The heel of the swing foot should always hit the floor first. Write down your findings and show them to his physician at the next office visit. If there are movement problems, ask the physician for recommendations to improve the senior’s gait. Check for unsafe footwear. Make sure that the senior has no foot problems. Schedule regular eye check ups to prevent vision issues from causing a fall. If your senior is taking four or more medications, ask his doctor the necessity of taking all of them. Inquire about medication reduction. Could any of the medicines make a person woozy and more susceptible to a fall? Obviously, eschew any tripping hazards. Just as you child proof a home for a toddler, trip-proof the residence of the elderly person.

Dr. Tinetti has brochures which familiarize clinicians, older adults, and anyone interested in the prevention of a fall. Information on procuring the Starter Kit, the Passbook, the Trifold Brochure, the Medication Brochure, or the Postural Hypotension Brochure can be located on http://www.fallprevention.org/ Because falling short, falling apart, falling behind, falling foul of, falling down on the job are not what we caregivers are about, we are not going to allow the” fall of the cards” dictate the safety of our beloved elderly. We want no “fall of man” or “fallen woman” on our watch! Other than “falling in love,” any other tumble is to be prevented at all costs!

the message. Little HIV prevention education is targeted at older people. Most older people do not receive training in safer sexual activities. Because older people don’t see themselves on posters or billboards advertising AIDS prevention, they may think they are immune to the illness, Taylor of SAGE said. Society itself has a blind spot when it comes to thinking about older people contracting HIV. “We don’t tend to think of older adults as sexual people and don’t tend to think of them as using recreational drugs,” she said.

By Liza Berger, Staff Writer

P

eople are aging with HIV. The introduction of highly active antiretroviral therapy (HAART) more than a decade ago has allowed people to live with the illness that was once almost certainly fatal. But the problems associated with growing older have introduced a new set of challenges. While the virus is “not a death sentence,” it’s “not a cake walk” either, said Dr. Kelly Gebo, a doctor and researcher at Johns Hopkins Bloomberg School of Public Health. She treats many infected patients over age 50. “The medications have toxicities and are not easy to take,” she explained. Among the issues older people face are weaker immune systems that have a harder time fighting off infections, toxic side effects from medications, and co-morbid diseases that may stem, at least in part, from the aging process. “They appear to be prematurely aging,” said Gebo, noting that people over 50 have higher rates of malignancies, as well as cardiovascular disease and strokes.

NEW FACE OF AIDS This older group represents a new face of the HIV/AIDS epidemic. About 29 percent of all people with AIDS (acquired immunodeficiency syndrome) in the United States are age 50 and older. (AIDS is the serious disease that can develop from the human immunodeficiency virus, better known as HIV.) In some cities, as many as 37 percent of people with AIDS are in this age group.

Meanwhile, the rates of HIV/AIDS among older people are 12 times higher for blacks and five times higher for Hispanics compared to whites. Also, in the last decade, AIDS cases in women over 50 were reported to have tripled; heterosexual transmission rates in this age group may have increased by as much as 106 percent. These adults represent the first generation of older adults living with HIV. Most are in their 50s, but some are in the 60s, 70s, 80s and even 90s. Also, while some of these cases are newly acquired, most are people who have been living with the disease lon g- term, perhaps 10, 15 or 2 0 years or more. “We are working with the first-ever generation of older people growing old with HIV,” noted Karen Taylor, director of advocacy and training for the organization SAGE (Services & Advocacy for GLBT Elders).

LACK OF EDUCATION, AWARENESS One reason why this older cohort is succumbing to the illness is because of lack of understanding, education and testing of older adults, several resources say. Many older people, because of divorce or the loss of spouses, are dating again. They may not realize the risk of contracting HIV because they were not raised in the “safe sex” era. Older women, in particular, may believe they are immune to the virus because they are beyond childbearing age. (Older women actually may be more susceptible because of a decrease in vaginal lubrication and thinning vaginal walls that can put them at higher risk during unprotected sexual intercourse.) But health officials and doctors have not effectively communicated

By Geri Hall,PhD,ARNP,GCNS-BC,FAAN

One of the issues I dealt with almost daily is the one of when to begin palliative care. For those who don’t know the term, palliative care means that the focus of the care of your loved one shifts from trying to maintain life as long as is humanly possible (families often believe they will be seen by family or God as “giving up”) to the focus of promoting function, comfort, and quality of life. At the end stages of the disease this usually involves a hospice referral.

AGING WITH HIV

The aging process tends to complicate the effects of HIV. While older adults tend to adhere to drug regimens better than younger people, the side effects can be more severe, researcher Gebo said. Renal failure is more likely to happen in the elderly. Metabolism of the drugs is affected by worsening kidney and liver function with aging, she added.

Allowing the patient to eat what they like Finding communication strategies that do not correct and communicate respect Paying attention to safety in the least restrictive manner (eg we can't prevent all falls in stage 6) Trying to prevent acute hospitalization, non-essential surgeries, etc. (American Association of Medical Directors (of long term care programs) is now proposing citing facilities who have too many hospitalizations and transfers to other facilities or within a facility. The idea is that once you are living in a facility you should be there for life) Attending educational support groups

seminars

and

caregiver

Having the caregiver take care of themselves and encouraging treatment for depression

The acknowledgment that Alzheimer's disease is chronic (long-lasting) and eventually fatal

In other words, palliative care focuses on quality of life but acknowledges that life ends....and with this awful disease, promotion survival to the point where everyone must live long into the final stage when the body shuts down -- fighting it even then -- is not necessarily good care.

The concern that the patient's physical, emotional, and spiritual comfort are the most important things -- even when a doctor says "We must...." That only the people empowered to decide for the patient can really evaluate what is best for the patient in light of what the patient would have wanted. That life is finite (has an end) Palliative care is not necessarily something that happens at the end of life. Many families take a palliative care approach as soon as the diagnosis is made by doing the following: Making sure the patient is free of pain

Most families begin to look seriously at palliative care at the end of stage 6 when the patient is no longer walking, speaking much, and is dependent for most activities. This begins with questioning how aggressive the medical care should be -- with usually the first question of antibiotic use, use of medications for things like cholesterol management. or determination if surgery should be done for a fractured hip. While our medical colleagues may press for "curing reversible problems" or "preventing a stroke in the future" (it is their job as MD to do this), it is the family's responsibility to determine how that fits into Mom or Dad's value system -- and recognize that Mom's value system may be different than Dad's so they may be treated differently. The challenge for the caregiver and family is to remove themselves from consideration of what they want. Decisions are not about family. They are about the comfort of the loved one.

Making sure the patient participates in social, family, and individual activities Trying not to provoke behavioral outbursts by managing fatigue, changes in routine and the environment, inappropriate stimuli, etc. Treating depression assertively Taking care for good preventive health measures such as flu shots, medication administration, hand washing, encouraging/participating in exercise, etc

PROBLEMS TO SOLVE Many answers still elude scientists regarding this population with HIV. Still a mystery is the precise cause of certain diseases, such as Alzheimer’s, in older adults with HIV. Is it the medication? The aging process? Or the disease itself, which can cause dementia in younger adults? Neurological problems can be caused by vitamin deficiencies, opportunistic infections or ARVs.

Complications from a variety of drugs also appear to be a major problem. Medicines for age-related conditions, Also, how much HIV is worsening co-morbidities, such as such as heart disease, depression, osteoporosis and heart disease and diabetes, remains unclear. diabetes, may interfere with strong ARVS, which are used Gebo is working on fine-tuning drug regimens for elderly to treat HIV. people living with AIDS to reduce the pill burden and Dementia is another problem that older people with HIV offer the best combination of therapies. or AIDS are facing. While older people tend to develop cognitive problems, ARVs may worsen them. Moreover, Another quandary doctors face with this population is many other health problems older people face, such as what to treat first. For example, is it more important to treat the HIV or the tuberculosis? Those are just some of osteoporosis, may progress faster in people with HIV. the new questions that scientists are grappling with as the Other “hidden” illnesses, such as depression and population with the disease continues to age. loneliness, are common in older adults with HIV. Because of the stigma attached to HIV and AIDS, they may feel There no doubt is still a lot to figure out regarding this they can’t tell their families and friends about their illness. population. Exacerbating the problem for researchers is (“What will the people in church think?”) Some may stop that drug companies have not included seeing their grandchildren. While there are advocacy older people in clinical trials of groups for older adults, this cohort may shy away from new drugs. Clearly, that has joining support groups. Depression, while a problem in to change. The population younger people, can lead to other health problems and of people with HIV is not getting any younger. have more detrimental effects in older adults.

Palliative care requires the family/care provider acknowledge a few things:

That the patient's level of disability and discomfort will at some point exceed their quality of life.

Financial problems among this population also cannot be overlooked, according to Gebo. Under Medicare Part D, the government program that pays for Medicare prescription drugs, there is a coverage limit at which the government will stop paying for drugs annually. That threshold is $2,250. When Medicare recipients reach this level in drug costs, they are responsible for the total cost of their formulary expenses—until they reach $5,100 in total spending. Many older adults with HIV must seek other sources of funding, such as the Ryan White CARE Act, that provides assistance to cover this gap.

The reality is that because people are living longer, they are engaging in sex until a later age. Viagra and other sexual enhancement drugs may contribute to increased Also, many older adults with the virus are in lower socio-economic groups. Staying “in shape” is not as easy rates of sexual activity. for them because they may not have the means to join a Also, physicians may not diagnose HIV infection in gym, Gebo said. Exercising is important in helping older people, or inquire about their sexual habits or reduce the risk of diabetes and cardiovascular disease, drug use, or talk to them about risky behaviors. both of which a r e m o re c ommo n i n o l d er people. Moreover, doctors may overlook early symptoms of Caregivin g cou ld present another financial burden as many older adults may need to rely on paid caregivers, HIV as normal signs of aging. such as home health aides.

8 TODAY’S CAREGIVER MAGAZINE • CAREGIVER.COM

Palliative Care with Alzheimer’s Food forThought

FINANCIAL STRESS

Geri has been working with families and dementia since 1978. A retired professor from University of Iowa Geri has been a consulting professional to the Washington University, St. Louis Alzheimer list for 13 years.


Caregiver Media Group has been the recognized authority on family caregiving since 1995. Through innovative and highly targeted recruitment campaigns, CMG is able to successfully educate and motivate family caregivers and healthcare gatekeepers in order to increase enrollment and retention for our clientís clinical trials.

SURVEYS INDICATE THE GENERAL PUBLIC BELIEVES THAT: OF STUDY STAFF ARE PRIMARILY MOTIVATED BY GREED. DISTRUST BIOPHARMACEUTICAL COMPANIES.

E

OF STUDY PARTICIPANTS ARE ‘GAMBLING’ WITH THEIR HEALTH.

Caregiver Media Group has been the recognized authority on family caregiving since 1995. Through innovative and highly targeted recruitment campaigns, CMG is able to successfully educate and motivate family caregivers and healthcare gatekeepers in order to increase enrollment and retention for our clientís clinical trials.

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THE FAMILY CAREGIVER BRINGS THEIR LOVED ONE TO JOIN YOUR TRIAL.

S E R

Caregiver Media Group has been the recognized authority on family caregiving since 1995. Through innovative and highly targeted recruitment campaigns, CMG is able to successfully educate and motivate family caregivers and healthcare gatekeepers in order to increase enrollment and retention for our clientís clinical trials.

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