You may ask: What is a caregiver? What does a caregiver do?

According to the Area Agency on Aging of Pasco-Pinellas, Inc., if you are you providing unpaid assistance to a spouse, relative, or friend who is ill, disabled, or needs help with basic activities of daily living you are a caregiver. If you help with rides to the doctor, shopping, meals, bill paying, bathing, grooming, dressing, walking or transferring to a wheelchair, housekeeping, managing medications, or arranging services to be provided by others, you are a caregiver.

Talk to your immediate family about you being the caregiver. Make sure they understand that you will not be able to spend a lot of time with them and let them be involved in your decision. Then reach out to the extended family.

Stage Two – Finding Help

If you have been a caregiver for months – or longer – on a regular basis, you are the primary caregiver. It has become clear that this is not going to be a short-term illness with a quick recovery. If you also hold a full-time job, caregiving may be exhausting you already. What is your loved one’s prognosis? How many more years of caregiving lie ahead?

Now is the time when you must find relief for you, the caregiver. Clearly, the loved one needs to have continuity of care, but if you do not find support for the person needing care there will soon be two people in need. As the flight attendants instruct, “put your mask on first.” If you don’t take care of your health you will not be able to provide the support your loved one needs.  Look to family, friends, faith communities, and caregiving agencies for additional assistance.

Stage Three: Heavy Care

You may have been providing care for years to someone whose mental or physical health is deteriorating – now at a more rapid rate. If the person for whom you are caring has Alzheimer’s disease or another degenerative disease, wandering at night may become a risk. But you cannot work ‘around the clock’. Your first responsibility must be to care for yourself. Caregiver burnout helps no one. Your second responsibility is to protect your care recipient, maintaining a safe and loving environment.

Stage Four: Letting Go

Letting go focuses on the meaningful and positive experiences you shared with your loved one.  It also acknowledges the grief that comes with loss of a loved one – whether through death, placement in a nursing home or mental deterioration. In this final stage, you have come to an end of the cycle of caregiving as you have known it. You will be experiencing grief in your loss, both of the care recipient and of your own role as caregiver. Still, your life must go forward as you reconnect with the world around you. No doubt, your caregiving experience will have given you new perspectives as you resume former activities and, quite possibly, pursue new directions as well.

A Personal Story

All my life while growing up at home with my parents, the kitchen has been the center of all family gatherings, it is where Mom and Dad taught me how to cook, and it is where I made my announcement that they were going to be grandparents for the first time.

These days, my parents are elderly and forgetful (dementia?). It concerns me when they are in the kitchen cooking. Things formerly taken for granted are now potential fire hazards.

Dishtowels and potholders left on the stovetop: Sometimes after using a potholder or dishtowel they do not pay attention – or remember – where they put it. On a stove, it could come in contact with a burner and catch fire.

Clothing can be another fire hazard in the kitchen. Our parents may dismiss this danger because they have “worn this many times and nothing ever happened.” Yet loose fitting clothing or long-sleeved robes or shirts made of flammable material clearly do not belong in the kitchen. When reaching over the stove they may catch fire.

Grease fires are the cause of most fires in the kitchen. They can happen while deep-frying if oil, butter, or shortening drips or splatters on the stove. Oil on the bottom of the pan will also cause a fire when put on a hot burner.

Another hazard in the kitchen is extension cords. We now have many more kitchen appliances than our parents had. And if parents are living in a home built 50 or 60 years ago, it was not wired for today’s plethora of  appliances. Growing up, the only small appliances we had were the toaster and a waffle maker. Now we have microwaves, blenders, coffee makers, mixers, toaster ovens and other plug-in tools. Many are on the kitchen counter, limiting work space and, likely, overloading limited outlets.

The immediate solution for most is to use an extension cord. But extension cords can be dangerous for three reasons. Improperly placed, they can be a tripping hazard. And if they are frayed, they can be a fire hazard. Using an extension cord for an appliance that was intended for a lamp can be a hazard if the appliance draws more current that the cord was intended to handle. This can cause the cord to become overheated and create an electrical short.

That fire hazards are real can be seen in statistics from the Centers for Disease Control (CDC).

• About 85% of all U.S. fire deaths in 2009 occurred in homes
• Cooking is the primary cause of residential fires
• Older adults ages 65 and older are among the groups at greatest risk.

So, what can be done? Some things are pretty obvious. After using a potholder  or dishtowel place it on a counter or hang it away from the stove. Good habits can go a long way in avoiding accidents in the first place.

Two items should always be handy in the kitchen: A box of baking soda and a fire extinguisher. The baking soda will quickly smother a small fire but, if the fire gets out of control, a portable fire extinguisher should be readily available. The fire extinguisher should be within easy reach of  the stove  and everyone should know how to use it. Make sure that the extinguisher has the force and range to snuff out a fire. Never ever use water – it will spread the flames.

If an extension cord must be used, make sure it is heavy enough to carry  the current the appliance requires without overheating. Check that the cord is in good condition and not frayed. If it is on the floor be sure it is not a tripping hazard. A better solution is to use a power strip. But the safest approach is to have an electrician install additional outlets around the kitchen.

Appliances themselves should be checked periodically for faulty wires or plugs. If they are unsafe, discard them; do not attempt to use them. These precautions can significantly reduce the potential for fire and other accidents.

Tetrabenazine Molecule for Managing HD

A few years ago we got our first client suffering from Huntington’s Disease (HD), and our second HD client soon followed. Huntington’s Disease, is a disorder passed down through families in which certain nerve cells in the brain waste away or degenerate. The very different circumstances these two clients were in –  and the nature of their environments – quickly helped us realize that there are Best Care approaches that can dramatically increase their quality of life.

Per PubMed Health (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001775/), “There are two forms of Huntington’s disease. The most common is adult-onset Huntington’s disease. Persons with this form usually develop symptoms in their mid-30s and -40s.

“An early-onset form of Huntington’s disease accounts for a small number of cases and begins in childhood or adolescence. Symptoms may resemble those of Parkinson’s disease with rigidity, slow movements, and tremor.

“If one of your parents has Huntington’s disease, you have a 50% chance of getting the gene for the disease. If you get the gene from your parents, you will develop the disease at some point in your life, and can pass it onto your children. If you do not get the gene from your parents, you cannot pass the gene onto your children.”

Symptoms of HD include both behavioral and physical. Behavioral symptoms may occur before movement problems become noticeable. Behavior changes can range from antisocial behavior to moodiness, restlessness and hallucinations. Once the disease has begun to affect physical movement, jerkiness, grimaces and loss of physical coordination will be noticed.

Five Tips for Best Results when Caring for Someone with HD

1. Face Facts: If HD exists or is suspected, it is vitally important to be tested to determine if the person has Huntington’s Disease. If HD is diagnosed, acknowledge it. Acknowledgment can make all the difference in life quality during the person’s remaining years, while denial both increases cost of treatment and significantly diminishes life quality.

2. Take Your Medicine: If you trust your doctor, take what s/he prescribes. If you don’t, get a second opinion. Although not a cure, prescribed medications can help control certain symptoms of the disease, thereby making day-to-day functioning easier.

3. Find Support: Establish a main support-giver to address mental, emotional, and intellectual needs. This could be a spouse, neighbor, church member, sister or brother; anyone with whom the HD sufferer can frankly speak on a regular basis.

4. Find Care: Seek out friends and family who are willing and able to dedicate time to the sufferer’s physical needs. Agree to a set schedule to get groceries or do the laundry.

5. Hire In-Home Care: Friends and family can’t do it all. Recognize that there will be extra needs that can’t be addressed by volunteers. Budget the money and get family to chip in if need be, because the primary caregiver will need the support too.

More information on Huntington’s Disease is available at the National Institutes of Health National Library of Medicine’s website and from the Huntington’s Disease Society of America.

A Personal Care Agreement (sometimes called a Personal Services Agreement) can be an effective way to avoid misunderstandings that could otherwise arise.

According to an article, “How to Prepare a Home Care Agreement With a Family Member,” Joseph L. Matthews, http://www.caring.com/articles/care-agreement, a Personal Care Agreement should include the following basic information:

• “When the care will begin.
• What tasks you’ll perform. Be specific and thorough, but also include the term “or similar tasks to be mutually agreed upon by the parties.” This gives you both some flexibility, so that you won’t feel like you need to rewrite the agreement every time you change the tasks you perform.
• How often, and for how many hours, you’ll provide this care.
• How much you’ll be paid, and when the payment will be made.
• How long the agreement will stay in effect. This can be a set time, like six months or a year, after which you can both decide whether you want to make any changes. It may be simpler, though, to make the contract open-ended, described with a phrase such as, “This agreement shall remain in force until terminated in writing by either party.” In that case, either of you can end the arrangement at any time simply by writing a signed, dated note saying that the agreement is over, and giving the note to the other person.
• A statement that the terms of the agreement can be changed only by mutual agreement, in writing, by both parties.”

A Personal Care Agreement, “can also help avoid misunderstandings with other family members about who’s providing care and how much money is changing hands. If the agreement doesn’t solve a particular disagreement with family members, you may be able to add something to the document, or change its terms, to address the problem.

“If the person you’re caring for is receiving state assistance for in-home care, the agreement can prove to the state exactly where some of the money is going, which the state program might require.

“If the person ever needs to enter a nursing home and wants Medicaid to pay for it, the agreement can show that these payments to you were legitimate, not just an attempt to “hide” funds in order to qualify for Medicaid’s services.”

Developing a Personal Care Agreement not only helps to avoid family conflicts by laying out who will provide necessary care and how it will be paid for. By focusing the family on the need to make arrangements for their parent/s, many potential conflicts can be identified and resolved before they become problems.

Finally, long term care insurance may provide for such care if there is a formal, reasonable agreement.

When Care for You, Inc. started back in 1996, our primary goal was to fill a gap in the spectrum of services to seniors and others with special needs. To that end, we set out on a mission to help seniors age in place and live independently at home, by offering them an alternative to more expensive “traditional” care. Over the years we have come to realize that all of these care-models are a part of the eldercare continuum.

For those who don’t have family or financial resources to cover the cost of care, there ought to be a safety net of nursing and assisted living resources for seniors who fall through the cracks.

From the White House Website:

The Middle Class Task Force unveiled a series of initiatives in the President’s FY 11 budget that are aimed at helping families with soaring child care costs, balancing work with caring for elderly relatives or people with disabilities and saving for retirement.  These are costs that have risen dramatically for families at a time when their incomes haven’t.  This is particularly true for the so-called “sandwich generation” – people who are caring for children and their parents.  Almost all of us know someone who has juggled caring for a parent or relative who can’t get along completely on their own.  Millions of Americans provide unpaid care to aging relatives.
These caregivers play a vital role in helping seniors stay in their communities or at home.  But too often they don’t have the support they need to balance caregiving with work and family responsibilities.  As Elinor Ginzler of AARP put it:
“AARP is grateful that the Middle Class Task Force has drawn attention  to an issue that is deeply important to our members—the critical role of family caregivers and what we should be doing to help them.
It adds funding to programs that provide transportation help, adult day care, and in-home services including aides to help bathe and cook.
The caregiver initiative won’t magically alleviate all the strain on caregivers and their families – but it is an important first step toward providing more support for families and caregivers and the vital services they are performing.
Terrell McSweeny is Domestic Policy Advisor to the Vice President

Hopefully Congress and the White House will realize the medical benefits of non-medical care

New Elder Communities Take Root Where We Already Live.

Written By:

Christopher Van De Moortel, President

Aging in Place and Senior Villages are beginning to sweep the country. Each “village” may vary slightly in their approach to helping seniors remain in their homes, but most have a combination of volunteer services and third party providers. From roofing contractors to picking up a prescription, their mission is to redefine how we live out our days: at home, in our homes, and not in nursing homes.

Na Hoaloha in Hawaii began in 1995 with the mission of helping those who fall through the cracks of the state and federal systems, using a neighbors helping neighbors framework. In 2001 in the Beacon Hill neighborhood of Boston, older citizens got together and created a network of services provided by volunteers, non-profits, and for profit third party companies. Since then the concept has continued to move down through New York City; Philadelphia; Washington, DC; Richmond, VA; North Carolina; and to the west coast. Senior Villages are the new paradigm in caring for the elderly. They have grown up from within their communities and in many cases you’ll see seniors helping seniors.

In the greater Washington D.C. area we have a number of Senior Villages. Capitol Hill, Palisades, Northwest Neighbors Village, Bannockburn, Chevy Chase, Burning Tree, Cabin John and Somerset to name a few. In some cases there are fees charged to residents of these villages to pay for the coordination of volunteer services and referrals to third party providers. Often, discounts are extended from those providers to residents within the village.

Home care for older adults in senior villages has tackled much of the physical environment (getting your groceries, going to the doctor, fixing the roof, etc.). We also must address the things that are less tangible like communication and socializing. In the senior village model, for the people that have all their needs taken care of – the laundry done,  a ride to the doctor, groceries delivered, and Junior helping Dad shower – many of these needs are being met through a combination of volunteers and vetted third party providers.

Caring for the elderly at home, in senior villages or not, requires a multi-pronged approach. While online communities  can help mitigate feelings of isolation and depression, and sharing photos of grandkids via email can bring a smile to the face and help seniors stay connected to family, there is another kind of interaction missing.

It is imperative to include dementia support and caregiver support in this new paradigm of senior living – what we call Caring for the Caregiver. Even with all the help for seniors, the primary caregiver is often overlooked. By addressing the primary caregiver’s emotional needs first, aging in place is easier.

In my opinion, assisted living for seniors in an institutional setting just doesn’t fit the bill anymore.

In order for a community to support its citizens as they age in place, the physical environment is paramount. Is it walkable? Communities that are successful in caring for their elders will answer this question, “Yes!” Are there supportive businesses nearby like a dry cleaner, cafe, grocery store, restaurant, or exercise gym with programs for seniors? What about a library, post office, church or community center? In many places the resources are there, but there are physical obstacles like roads. In Bethesda, Maryland this barrier was overcome with a variety of tools. There is underground passage near the metro station that allows pedestrians to cross the six lane, divided Route 355, and an overpass on the similarly busy Old Georgetown Road. The Bethesda 8 Trolley offers free rides all week long and circulates through much of the city. Even in places where it is too costly or unrealistic to build an overpass, municipalities can easily increase length of time of walk signals to allow senior citizens, a parent with two kids in a stroller, or someone on crutches to safely cross the street. That’s the beauty of universal design. It helps everybody.

As heard on the Kojo Nnamdi Show last week, Aging in Place Villages or communities like The Palisades in Washington, DC and the Bannockburn Community’s ‘Neighbors Assisting Neighbors’ nearby in Maryland, have taken a little more grassroots approach. In the Palisades when you join as a paying member you can call one phone number to request a variety of services performed by volunteers for free. Things such as major home repairs, home inspections and home health care for seniors provided by third party companies may be charged at a reduced rate. In Bannockburn they address the needs of their residents with volunteers too, emphasizing an intergenerational approach. Services can be arranged through the website Lotsahelpinghands.com.

The importance of the social aspect cannot be understated. From our own experience at Care for You over the past 14 years, we have seen a number of our clients with Alzheimer’s disease and dementia who enter nursing homes quickly deteriorate and die. When your memory is already impaired and you are suddenly taken out of your familiar surroundings, it deals a death blow to your soul. The value of being recognized at local businesses and feeling like a part or your community and neighborhood is truly something we all need. To quote Louis Tenenbaum, a leading authority on Aging in Place, “It requires a custom model of care that is about YOU. Aging in Place is based in the sanctity of dignity, respect and control- independence, your home is your castle. These important human and American values are almost impossible to maintain in the dehumanizing, medical model of ‘senior housing’.”

Elderly people who care for a spouse who has dementia are at increased risk of developing dementia themselves, a study finds. The stress of attending to a mentally incapacitated spouse may somehow contribute to the added risk, scientists report in the May Journal of the American Geriatrics Society*.

Previous studies have shown that chronic stress leads to increased levels of the hormone cortisol in the body, which can suppress immunity, says study coauthor Peter Rabins, a psychiatrist at Johns Hopkins School of Medicine in Baltimore who teamed with researchers at Utah State University in Logan to do this study. “It’s long been thought that this might have adverse outcomes psychologically and physiologically.”

Taking care of a spouse with dementia takes a toll in other ways as well, Rabins says. “Caregivers often complain that they lose their friends,” he says, because they don’t have time to socialize. But the biological mechanisms that might link these challenges to heightened dementia risk remain unclear.

In the new study, the researchers assessed the mental status of 1,221 Utah couples who had agreed to be part of a community-wide health study that started in 1995. The men averaged age 76 and the women 73 at that point, and 95 percent had been married for more than 20 years. Researchers tracked these couples’ mental status with up to four exams over the next decade with a median follow-up of 3.3 years. No participants in this analysis had dementia at the start.

During the follow-up years, 229 people found themselves caring for a spouse with dementia. The caregivers were six times more likely to develop dementia themselves compared with people whose spouses did not develop dementia. The researchers accounted for differences between the couples in age, education, socioeconomic status and the presence of variants in the APOE gene that can increase risk of Alzheimer’s disease.

While this is the first study to look at actual dementia risk in spousal caregivers, other research has documented an array of physical and mental problems associated with caregiving. These include depression, sleep problems, less exercise and unhealthy diet, says Peter Vitaliano, a psychologist at the University of Washington School of Medicine in Seattle, writing in the same issue of the Journal of the American Geriatrics Society. All these conditions may be risk factors for dementia, he notes.

In the new study, the authors point out that some of the increased risk of dementia in caregivers may be due to shared environment. The couples had been married on average for 49 years upon enrollment in the study. But what those shared environmental risk factors might be remains unknown.

One other possible contributor to this dementia risk could be the tendency of people who are prone to distress or mental illness to find and marry one another, Rabins says.

Bruce McEwen, a neuroscientist at Rockefeller University in New York City, says that in the future researchers might do well to investigate whether caregiver spouses who have less social support — or who are just more isolated — might be at the most risk.

By Nathan Seppa

(This article was published in Science News, June 19, 2010, Vol. 177 #13, http://www.sciencenews.org/view/generic/id/59316/title/Caring_for_a_spouse_with_dementia_leaves_caregiver_at_risk.)

Previously published, related articles on the Care for You Web site include: “Caring for the Caregiver,” and “Don’t Forget to Remember.”

Recent presentations by Ms. Elizabeth Flurry, Director of Clinical Integration at Johns Hopkins Health Services, showcase some of the exciting technology currently, or soon to be available, to assure and protect one’s health: while living alone with impairments, or monitoring certain conditions.

One such device being developed by Georgia Tech is called a smart shirt, www.smartshirt.gatech.edu/,  a medical-grade EEG shirt that monitors temperature, respiration, blood pressure, heart rate, and blood oxygen levels. The user can wear the shirt to sleep and with a sensor under the sheet can also can be continually monitored for weight gains due to the lungs filling with fluids. Out-of-norm readings could then trigger a call to an emergency service. In other words, the device could prevent someone from dying in their sleep.

On a somewhat simpler scale and available now is the MD.2, www.epill.com/md2.html. The e-pill Monitored Automatic Pill Dispenser can dispense all tablets and capsules. It can be set up to dispense up to six times per day with refill frequency of from four to 28 days, depending on the number of different pills taken. If the medication cup is not removed from the dispenser within a certain time period, it will call the caregiver.

A smart toilet,  www.cnn.com/2005/TECH/06/28/spark.toilet/index.html, has been on the market in the U.S. for about a year, although it has been available in Japan for much longer,. (Their population aged earlier than ours.) The smart toilet can monitor vital signs including hydration and blood sugar levels, and automatically send suspicious results to the doctor. And it has a motorized, adjustable seat height.

The increasing existence of devices like these has several implications. Home care for seniors can more easily be provided by family members and others without formal medical training. Moving these functions out of the out-patient clinic and into the home also reduces the nation’s health care cost. Technology is truly moving us toward early intervention, faster response times to medical emergencies and, in some cases, prevention.

Tips for the Alzheimer’s Caregiver

A recent article by Melanie Haiken, Caring.com Senior Editor, www.caring.com/blogs/, addresses the subject: What to do when the doctor isn’t listening to you or the person you’re caring for, not carrying out your wishes when it comes to treatment and medication choices, or recommending drugs or treatments that seem inappropriate for much older patients. Here are a few examples.

• Sarah says her mom’s doctor tries to make her feel guilty when she asks to remove a medication from her mom’s regimen or refuses a procedure. Her mom, who is 90, is in late-stage Alzheimer’s, so she decided not to give Aricept and to refuse a colonoscopy, but had to fight those battles with the doctor who disagreed.
• Eileen feels it’s important to honor her mom’s decision not to take Aricept for her advancing Alzheimer’s, and told a story of her mom being admitted to the ER for a sprained ankle, then falling off the bed while having X-rays and shattering her heel and arm.
• Joseph says it is important to find a doctor with geriatric experience, and you may need to change doctors if the relationship is not working. If you do not know any doctors in your area with geriatric experience, you might try asking someone at a local senior center or assisted living facility; they usually have experience working with local doctors with expertise in aging.
• Jan reminds everyone to get an irrevocable POA for medical decisions and make sure you or someone else attends all medical appointments to advocate for the elderly patient.

Sometimes the problem does not lie within your control; what is wrong is that the doctor is not listening to you or not taking your loved one’s age or situation into account when making treatment decisions. In many cases, it is like a bad relationship; communication has broken down and you and your family member are not getting what you need.

Here are five signs it may be time to “break up” with your doctor:

1. You feel the doctor blames, ignores, or criticizes you or the person in your care
2. The doctor doesn’t respond to your feedback, or becomes defensive or unpleasant
3. It seems the doctor isn’t taking your family member’s pain or other symptoms seriously enough
4. You find out about treatments that can help that the doctor hasn’t told you about
5. The doctor doesn’t explain treatment options clearly, resulting in mistakes

If you have had a truly unpleasant exchange with your doctor, it is your prerogative to find a new doctor and ask the staff to fax over the request for records.

You will breathe a sigh of relief once you are dealing with a doctor who listens respectfully, answers your questions, accommodates your requests, takes your family member’s symptoms seriously, and works with you to develop a treatment plan you can all feel good about.