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 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.

Mr. B. had moderate to advanced Alzheimer’s Disease during the eight years we worked with him and often had hallucinations of things that most of us can’t see. He would frequently mistake his wife for his mother or daughter, or argue with his reflection in a car window, sometimes thinking his wife was inside and locking him out. When I was driving him around he would look in the back seat and ask if that was my baby, or if I knew whose it was. I would simply respond, “No I don’t know.” His wife had Macular Degeneration and was exhausted from taking care of him, doing more of the chores, managing all the finances, trying to live in her spouses bi-polar fairyland so as not to upset and agitate him. She needed a break.

We began taking him out to every possible free venue in Washington, DC in an effort to provide both physical and mental stimulation. One day per week was for swimming. When the weather was nice we’d walk along the National Mall with him, popping in and out of the Smithsonian Museums. Book stores, cafes, parts of the C & O Canal, and monuments helped round out the mix. It was working. His wife got respite during the day and he would fequently come home tired and sleep through the night.

Mt. T also had Alzheimer’sDisease and had survived WWII after being separated from his wife in the Netherlands. Often, he would slip back to war time, and into his native tongue, telling stories as if they’d happened yesterday. The main challenge with Mr. T. was getting him to bathe and helping control his sometimes violent outbursts. We were able to find a young caregiver with a Dutch last name and who spoke a bit of German. He was able to understand enough of Mr. T’s Dutch to carry on a conversation, responding in English of course. Mr. T refused to take showers all week long. He’d usually tell us that he’d already taken one that day or yesterday or the day before. Our senior caregiver would simply respond, ” Oh, okay”, and change the subject. After five or ten minutes he would try again to make the shower happen, and he was almost always successful.

Some tips we have for dealing with difficult dementia cases follow:

1. Don’t argue or debate facts and reality.

2. Distract them with a new task if they start to become agitated. For example, If Mr. B was arguing with his reflection we’d say, “I don’t know why the door is locked. Let’s go to that cafe, get a drink, and think about what to do”. Often, by the time we got our drinks he would have forgotten about the situation already.

3. Ask them for their help with tasks. Get them working in the garden, sweeping the floor, or loading the dishwasher.

4. Get them out of the house. We all get cabin fever and dementia can greatly exacerbate this. Physical and mental stimulation are important for those suffering from Alzheimer’s.

5. Get them talking! Alzheimer’s patients often have a great recollection of the past. Ask them questions about when they were in college, the war (take your pick), where they got married, or Washington, DC in the 1960s.

6. Recognize some days will be bad. Some will be even worse. Don’t take it personally.

We strongly believe that all people need to have access to community. Those who suffer from memory impairment should not be locked up in Alzheimer’s wards in nursing homes and assisted living.  They need to be out with other people, living a real life, even if they are living a fantasy world in their own minds.

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’.”

The Virginia General Assembly set a precedent this year by passing legislation that would override local zoning laws and allow these structures to be placed on a family’s property with orders from the individual’s doctor. Some of these structures are even set up to monitor such things as vital signs and fall-detecting devices.

A local minister, Rev. Kevin Dupin, was inspired by modular hospital rooms during his mission work in Latin America. MEDCottage (www.MedCottage.com), being built in Salem, Va., is expected to retail for between $65,000 and $75,000 with production to begin by early 2011. The company plans to develop a lease arrangement as well.

Other companies producing portable structures with senior relatives in mind include Seattle-based FabCab (http://fabcab.com/), and San Francisco-based Larson Shores (http://www.larsonshoresarch.com/).

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.”

 Side effects of visual impairment can include hoarding or extreme clutter. When seniors can’t see what they are throwing out, they may be less inclined to do so. This “messiness” can, in turn, increase the risk of falling.

 Fortunately, a few companies are realizing that 1) people with limited or impaired  vision would like and can still benefit from cellular technology and, 2) for some, a phone is all they want. One such company is Jitterbug, www.jitterbug.com/Phones. Their offers include live customer service 24 hours per day. They greet by name and can even update the phone’s phone book, thus cutting down on confusion and stress. Other sources for solutions available in the greater Washington, D.C. area include: Vision Aware (http://www.visionaware.org/md ) and the Low Vision Center (http://www.lowvisioninfo.org ).

 If your loved one wants the convenience of using a cell phone but has a problem seeing to dial a number, has trouble hearing incoming voices or gets confused with all of the menu options choices like this could make life easier for all.

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.