I was scanning some articles online yesterday and I came across a NY Times article that discussed the testing and treatment of an extended Columbian family that has a genetic mutation that guarantees they will develop dementia.  You can read this NY Times article yourself, but my main take away was that scientist may have a tremendous opportunity to make progress in this battle against Alzheimer’s.  You see, the test group is large enough to try different treatments and still generate statistical significance.  Also, and the mutation appears strong enough to the participants that they are very eager to participate in the process.

Not being a scientist myself, I do not fully understand all the protein and enzyme research that is often presented in scientific journals.  But I do know that much of learning comes from trying one solution and measuring the results.  However, in order to do this effectively you need a “control”.  In business it is much easier.  You can starts two identical businesses and have them pursue different marketing campaigns.  The more successful business we would say had the more successful campaign.  But with regard to the human body – its not as easy.

As a home care professional, I know that many of our clients suffer from this disease.  I also know that these same clients, while still cognizant, are fearful about the disease and its future effect on their body and their life. In another post, Care Options for Alzheimer’s Disease, we discuss how home care can be of help in living with the disease once you have it, and everything in that post is accurate.  But the more clients that we take care of that have this disease, the more fearful I become of the disease.  So, cross your fingers with me and hope that these most recent tests will provide our doctors and scientists with some breakthrough information on the treatment ultimately the prevention of this disease.

I lost a client last week.  Certainly I’m sad for her passing, but I’m happy for her as well.  It was her time to go.

I came to know her when she had already been diagnosed with Alzhiemers disease.  She, like the rest of us, had her good days and bad days, but those first six months with her she still had that spark, that burst of energy.  I would have liked to have known her earlier.

As time progressed she became more reliant on our home care team, and we all dreaded the progression of her disease.  We all know that we are only passing through this world, and that some people’s trips will be faster than others, that some people’s trips will be easier than others – but I think that we all hope that for those that we care about, that their stays in this world will be long and easy.  As a home care professional, our team knew that her time was short and that her journey from here to the end could be difficult.

The funeral was on a glorious fall day, and I managed to attend the service between my two children’s soccer games.  As I was sitting their in the hall, the thought struck me “What a great variety of life.”  In the span of five hours, I will coach two soccer games, and in the middle attend the funeral of a client whom I had grown to greatly admire.  I think that my client would be happy.

I will miss her.

A very humbling experience recently – the details of which may be specific to me, but the lesson applies to countless thousands of us each day.

I had to fix an oven faceplate in my kitchen.  The oven worked just fine, and perhaps that is why I kept putting off this task, but the two screws holing the nameplate had broken.  Actually not even both but only one screw.  Sure this was a “special” screw from an oven manufacturer and they wanted to charge me $75 service charge plus parts to fix it.  OK, that just ticked me off so I ignored it – for a long time.  And guess what, the problem never got better.  I would look at the oven with the missing faceplate and each time it would bother me more.

I was just about to call the repair service and pay up to get this fixed, when my wife said “Have you checked at the local hardware store?”  “No, but there is no way that they are going to have this ‘special’ screw” I responded.  “”Oh, I did not realize that it required a ‘special’screw.”

And then it hit me – it probably does not need a special screw, but my mind, for whatever reason decided that it did. I promptly set off for the local hardware store with the good screw in hand.  I was greeted at the door by a clerk offering to help me.  I showed him the screw and relayed my needs.  He asked only two questions.  First, did it need to have a white head?  “No” I answered.  Second did it need to have an Allen wrench head?  “No” again I answered.

One minute later, seriously 60 seconds I held in my hand two screws, proper length and thread count.  Phillips head instead of Allen head (no matter).  Total cost $.17 and that included tax.  I promptly went home and repaired my problem.  Two minutes of install and $.17 had just solved a year old problem.

Key takeaways:

1 – My wife reframed the problem.  I did not need “special” screws.

2 – Seeking the help of a professional, the store clerk, who had seen the problem before was a huge help in swiftly and economically solving my problem.

If there is an elderly person in your life that you would like to help, but do not know how, consider using a geriatric care manager to perform an elderly assessment and assist you in creating an effective care plan.

Sometimes I have been known to be a little bit closed minded.  To admit the truth to others is difficult.  To admit the truth to yourself can be downright painful.  So when I was suffering from my fall version of my biannual allergy attack, my mother suggested that I begin using a neti pot to help curb my suffering.

I said sure, what is a neti pot.  Here is the curve ball.  It is a small, almost teapot like container that hold warm salt water and you pour it through your nose.  That’s right, through your nose.  After I discovered this I quickly dismissed my mother as a crack pot crazy lady – which is not the first time I had done this.  I mean really, pour water through your nose and sinuses?  I choke and cough when I put my head under water at a pool.

So for the next 18 months I complained about allergies and how the medications made me feel icky, and she kept on telling me about the neti pot.  So after 18 months I found myself in a particularly bad spring pollen season.  Sure, the flowers were beautiful, but I was clogged up and my eyes and throat were sore.  Desperate time call for desperate measures.  I went and got a neti pot.  I tried to use it.  I gagged the first time, but I was desperate, so I tried again – and again and again.  And guess what my mom is not as crazy as I thought.  It worked, and pretty quickly at that. Furthermore, I became better at using the neti pot so I was no longer gagging.  As using the neti pot became easier, I used it more and my results improved.  My life improved.  I actually stopper using allergy medicine and used the neti pot 2-3 times a day during the peak allergy season.

So what did I learn?  First my mother may be crazy but not in this case.  Second, that my allergy medicine was helping me breathe, but it was also making me feel bad.  Third, that I should not be afraid to try new things even if they seem strange or weird or foreign to me.  People have been using a neti pot for thousands of years – why should I be so afraid to try it.  People have also been using home care for many years.  And while the thought of having a professional caregiver come in to help take care of your loved one may seem weird or strange or foreign at first, after even a short trial I believe that you just might find home care helpful, beneficial and empowering.

Kelly, a 47-year old mother of five, needed help during recovery from a series of back surgeries. Life During Surgery Recovery Periods – Success Story

What, a gift. Sure, think about it. Someone has agreed to help you out. In essence take care of you. Some may do this as a profession, others do it because of a friend or family member may be in need. Regardless of the reason, if you are the lucky recipient of home care – consider yourself lucky.

Introduction

According to various studies, approximately 70 to 80 percent of long-term care is provided by families, not institutions, and regardless of the family, when it comes to caring for an aging loved one, the tensions that can arise are usually very similar. Decisions, both large and small, will need to be made, but family dynamics can keep these decisions from being made in a timely matter—if at all.

Family dynamics can be even more difficult in families that are redefined through divorces and remarriages. Who is responsible for the aging parents if they get divorced and each lives alone? Who is responsible if they remarry or cohabitate with a partner? Who takes responsibility for the new spouse if the original parent dies? These “blended” families can weaken family ties and place loved ones in a vulnerable state as they age and need assistance.

Another “modern” household scenario is the multi-generational family, where the children are caring not only for their own children—or even their grandchildren—but also their parents. In fact, many families have three generations or more living under one roof. These extended family living arrangements can create a different type of strain on family dynamics and impact the care of older family members.

So how do you make sure your loved one receives the care he or she needs—and the best care possible—amid shifting family dynamics or stressful family dysfunction? The keys are to communicate, educate and coordinate.

Communicate

Don’t delay talking about caregiving issues—working together as a family from the beginning can help avoid conflicts before they happen. When family members disagree over the best way to care for a loved one, the resulting issues can have long-lasting consequences; however, when families join together, difficult decisions and burdensome tasks are made easier through sharing the effort.

Start the communication process by sitting down with all the involved family members and discussing who will be responsible for what area of care. The level of care provided by various members can be based upon their means and resources. For example, one sibling may provide a room in their home for an aging parent, while another may help contribute to the cost of the parent’s medical expenses, and an aunt may be responsible for transporting the parent to medical appointments. Here is some additional advice about communicating in regards to caregiving from The Family Caregiver Alliance:

• Schedule a family conversation, but don’t try to address all the issues in one meeting.
• Know that everyone involved will view the situation differently. Respect each other’s perceptions and perspectives and try to find opportunities to compromise.
• Each person should evaluate and communicate what they can reasonably do. Then, divide tasks among family members according to individual abilities and current life situations.
• Have realistic expectations and know going in that chances are the caregiving burden will be disproportionate among those who can help.
• Do not shy away from discussing monetary concerns. Everyone involved should know the financial picture.
• Put the care plans and financial agreements in writing and share copies with everyone involved.
• Agree that the primary caregiver must keep all family members updated on the health status of the loved one. Nobody wants to be surprised by a seemingly sudden decline in function or cognitive abilities.
• If necessary, bring in a neutral third party, such as a social worker or other professional, who can help facilitate a family meeting, inform the family about care options and advise about long-term care decisions.

Of course, not every family may has multiple members who can help out, so the task of providing care may fall to one family member exclusively. Or perhaps one member lives close by but another lives far away. In these situations, communication is still crucial; however, it is equally essential for caregivers to educate themselves about available options for obtaining help from outside providers.

Educate

Educating yourself about the variety of resources available for caregivers locally and nationally is one of the most important steps in the caregiving process. Learning about available resources benefits not only the patient, but also helps the primary caregiver, and entire family, feel more comfortable about the challenges and burdens they may be facing. Although every community is different, there are similar types of services found throughout the United States.

One valuable online resource is The Family Caregiver Alliance (www.caregiver.org), which offers the Family Care Navigator – a state-by-state resource to help locate local government, nonprofit and private programs. The Navigator includes services for family caregivers, as well as information on government health and disability programs, legal resources, disease-specific organizations and more.

Another valuable source is Benefits Checkup (www.benefitscheckup.org) – an online service of the National Council on Aging, which helps families find and enroll in federal, state, local and private benefit programs. Eldercare Locator (www.eldercare.gov) connects caregivers with the local Area Agency on Aging’s Family Caregiver Support Program, state Medicaid programs and community-based organizations.

Beyond support organizations and programs, there are websites designed specifically to assist with the coordination of caregiving activities. For example, Lotsa Helping Hands (www.nfca.lotsahelpinghands.com) is a free online service for creating private caregiving coordination where family members can stay informed and more easily provide assistance and support to one another. The service features many communication tools, including the ability to store and retrieve vital medical, financial and contact information and convey medical updates. In addition, there is a calendar function specifically designed for organizing caregiving activities.

Coordinate

After you educate yourself about resources, it is time to coordinate the care of the loved one, especially when care is being provided at home. If you are helping an older or disabled family member who does not live nearby, coordinating care for that person is even more challenging, whether you live an hour away or in another state.

Generally, two types of home-based care are available:

1. If your family member requires regular assistance with medically-oriented needs, home health care organizations and skilled nursing agencies may be the proper choice. They provide a range of medical services, such as medication assistance, nursing services, physical therapy and medical social services, and can coordinate care with other health care providers.
2. If your family member needs help with daily activities and personal care (such as household chores, meal preparation or bathing, or is just in need of companionship) non-medical home care is an excellent, cost-effective, flexible and convenient option for assistance with everyday activities.

Caregivers also need to take care of themselves. Respite care through the use of a non-medical home care service can provide caregivers with temporary relief (varying from a few hours to several weeks) from day-to-day tasks.

The Benefits of In-Home Care

Providing care for an aging or ill loved one can bring out the best and the worst in family relationships. Ideally, the experience should be a time for families to come together; however, the tensions, demands and pressures of caregiving can lead to conflicts, which most often arise over an unequal division of caregiving duties.

While in-home care cannot resolve family problems, it can:

• Be a source of stress relief for the primary caregiver while helping to keep the attention on quality care for the loved one.
• Help remove a major contributor to the stress associated with caregiving—the physical responsibility of actually caring for a loved one.
• Play the role of an objective third party that is focused on the top priority—caring for the patient—while any underlying problems are resolved by the family.

Neil and Sue needed help making Dot, Neil’s 84 year-old mother who suffered from advanced dementia, comfortable in their home while she was on the waiting list for a near-by nursing home.  Providing Stability During a Time of Change – Success Story

Nutrition remains important throughout life.  But good nutrition is not always a priority in life.  While we justify this because of our busy schedules or other reasons, the benefits of proper nutrition make this topic difficult to ignore.

Our Five Ways to Eat Better, when used as a basic guide, will get you on your way toward proper nutrition.

Introduction

Over the past decade, awareness of Parkinson’s disease has been heightened by the diagnosis of celebrities such as Michael J. Fox and Muhammad Ali. But the mysteries of Parkinson’s—including how the disease starts and its progression—remain unsolved.

Parkinson’s is a complex disease that varies greatly among affected individuals, so it’s important for both the patient and caregiver to understand the symptoms of the disease, the needs of the Parkinson’s patient, and, most of all, how to make the caregiving environment as positive and effective as possible.

What Happens to the Person with Parkinson’s

Experts at the National Institute of Neurological Disorders and Stroke note that Parkinson’s does not affect everyone the same way—symptoms and their rate of progression differ among people with the disease.  Also, there are no tests to accurately diagnose the disease.

Early symptoms of Parkinson’s disease are subtle, progress gradually, and are sometimes dismissed as the effects of normal aging. The four main symptoms include:

• Trembling (or shaking) of hands, arms, legs, jaw and face
• Stiffness of the arms, legs and trunk
• Slowness of movement (also known as bradykinesia)
• Poor balance and coordination

Parkinson’s usually begins around age 60, but can start earlier—even before the age of 40. There is no cure for the disease, but people with Parkinson’s often benefit from medications that can dramatically improve symptoms.

Despite common misconceptions, Parkinson’s disease itself does not shorten a person’s life; however, late stage symptoms (such as immobility, poor balance and difficulty swallowing) can affect a person’s quality of life and raise the risk for fatal complications.

Caring for a Loved One with Parkinson’s

The needs of the Parkinson’s patient are similar to the needs of any patient with a chronic disease. But since no two people experience Parkinson’s in the same way, there is no “right” way of providing care and the steps you take will need to adjust as the disease progresses.

Coordinating and providing care for a patient with Parkinson’s is mentally, emotionally and physically challenging. One of the best ways to ensure your loved one with Parkinson’s receives the care they need is to understand:

• level of care needed,
• your role as a caregiver, and
• care options available to you.

By educating yourself and developing a plan for providing the appropriate and needed care, you can take care of your loved one while at the same time preserving your own well-being.

General Issues

Since Parkinson’s affects nerve cells as the disease progresses, symptoms may begin to interfere with daily activities. The tremors, or shaking, may make it difficult to perform tasks such as holding utensils or reading a book.

Bradykinesia, or the slowing down and loss of spontaneous and automatic movement, also is particularly frustrating for Parkinson’s patients because it can make simple tasks more difficult. Activities once performed quickly and easily, such as bathing or dressing, may take much longer. As the disease progresses and the symptoms worsen, patients may have trouble walking, talking, chewing, swallowing or speaking.

Diet and Nutrition

As Parkinson’s progresses, it may be difficult to maintain proper nutrition since patients can experience some degree of swallowing difficulty. Supplementing meals with high-calorie vitamin shakes and eating softer foods can help. Also, tremors and shaking my make it difficult to hold utensils to eat or cut food, or even eat certain kinds of food (such as pasta that needs to be twirled onto a fork).

Hygiene

The rigidity, slowness, stiffness and fatigue that come with Parkinson’s make it more difficult to perform simple tasks. For example, a 5-minute shower can average 15 minutes or longer for a person with Parkinson’s. The person may also have balance problems, so activities such as bathing may require adaptive equipment be installed such as handrails, a bath bench or a hand-held showerhead.

Elimination

Constipation is a common problem for people with Parkinson’s, caused either as a direct effect of the disease, immobility or medications being taken. The most natural way to combat constipation is a high fiber diet, adequate fluids and exercise. In some patients urinary incontinence may also be a problem, and patients with poor mobility may have difficulties reaching the toilet or unfastening clothing.

Mental Challenges

Cognitive problems, such as short-term memory loss, difficulty following complex instructions or lost ability to do multiple tasks may occur in people with Parkinson’s. Patients also can have occasional speech impediments, such as stammering or drooling. While not harmful, these symptoms can have a psychological impact on the person with Parkinson’s.

The Caregiver’s Role

Early in the disease, most people with Parkinson’s simply need understanding and emotional support. A Parkinson’s diagnosis should be discussed openly—it is a life-changing event for everyone affected and talking about what you are experiencing can help prevent resentments further down the road.

Because the symptoms—and their degree of severity —vary widely among patients, the caregiving needs of people with Parkinson’s also can vary widely, but usually involve some level of assistance with daily activities. It also is important to create a safe home for the Parkinson’s patient through modifications, for example, making sure rugs are secure to avoid slipping and installing handrails for support.

While caregivers may think they are prepared for their new role, many caregivers may not fully realize the demands of caring for a person with Parkinson’s. Because people with Parkinson’s can live for a long time following their diagnosis, the caregiver’s role becomes a long-term commitment, which is why it’s important for the caregiver to schedule personal time for stress relief and self-care. Caregivers cannot do it all by themselves and need to realize that asking for help is not a bad thing. In fact, many times, asking for help is the best possible option.

Caregiver Support

Ideally, a team of professionals should be involved in the care of a person with Parkinson’s including a neurologist, a physical therapist, a speech therapist, an occupational therapist and a nutritionist.

Many of the care services that Parkinson’s patients require can be provided by medical and non-medical home care agencies including physical therapy, speech pathologist and nursing care. Personal care services such as bathing, dressing, feeding can be provided by a home care company as well as recreational activities and companionship.

Meeting the needs of the patients may mean using one or more services. If you are unsure when to seek help, consider the following: Are the safety, health and care needs of the patient are being completely met? If not, it is time to seek additional assistance.

The Benefits of Non-Medical Home Care

Non-medical home care addresses the activities of daily living, or ADLs, as its primary goal. These ADLs include dressing, bathing and feeding. For the client, these services help preserve the quality of their life and their dignity while meeting their day-to-day needs. Non-medical home care also can provide assistance with care needs that may be too intimate or physically challenging for the caregiver, such as bathing the client or helping them with exercises.

The greatest benefit to non-medical home care is that it provides the caregiver with needed respite from their routine, whether it is daily or just one day a week. Caregiving is mentally, emotionally and physically stressful, and a third-party can often help relieve the stress of the situation while bringing a professional approach.