Alzheimer’s The “Invisible Patients”

une is Alzheimer’s awareness month. I wanted to shed some light on the caregiver’s, loved ones and friends that are left to grieve the process of this devastating disease. Memory loss caused by Alzheimer’s disease and other forms of dementia does not only affect the person with the disorder, it affects the entire family.
In fact, the impact on families can be so extensive that experts on the subject have referred to primary caregivers as “the second victims of Alzheimer’s” and families as “the invisible patients.”
A research-based paper co-authored by Henry Brodaty, MD, and psychologist Marika Donkin, titled “Family Caregivers of People with Dementia,” offers detailed clinical insight into the actual effects of Alzheimer’s disease on the family unit.
The publication indicates that caregivers face many obstacles as they balance caregiving with other demands, including child rearing, their careers, and relationships. They are at an increased risk for burden, stress, depression and a variety of other health complications. The effects on caregivers are diverse and complex. Numerous studies report that caring for a person with dementia is more stressful than caring for a person with a physical disability.
The effects on caregivers include:
Increased Risk of Physical Illness – Caregivers report a greater number of physical health problems than noncaregivers. Caregivers are at increased risk of various problems including cardiovascular problems, lower immunity, poor sleep patterns, slower wound healing and higher levels of chronic conditions such as diabetes, arthritis, ulcers and anemia.
Diminished Emotional Well-Being – Levels of psychological distress are significantly higher in dementia caregivers than in other types of caregivers and non-caregivers. Caregiver stress can result in serious psychological problems, including depression and anxiety that should be treated immediately.
Increasing Social Isolation – Caregivers often lack social contact and support, and, as a result, experience feelings of social isolation. Caregivers tend to sacrifice their own leisure pursuits and hobbies, reduce time with friends and family and give up or reduce employment in order to devote time to their loved one.
Growing Financial Challenges – Costs associated with caring for a loved one with Alzheimer’s disease are high. Direct costs include physician care, diagnostic tests, pharmaceuticals and personal nursing care. Indirect costs include loss of earnings by family caregivers as they
relinquish or reduce employment and paid hours out of either choice or necessity.
Quick facts:
ALZHEIMER’S DISEASE IS THE 6TH LEADINGCAUSE OF DEATH IN THE
UNITED STATES.
16.1 MILLIONAMERICANS PROVIDE UNPAID CARE FOR PEOPLE WITH ALZHEIMER’S OR OTHER DEMENTIAS.
THESE CAREGIVERS PROVIDED AN ESTIMATED 18.4 BILLION HOURS OF CARE VALUED AT OVER $323 BILLION.

The age where Alzheimer’s can start affecting a person is at the age of 30, though this is not common and reach all the way to age 90. There is a genetic test that you can get by a simple blood draw that will tell you whether you carry the gene. Now some would argue, why would I want to know? There is no cure for Alzheimer’s currently. You would have to speak to your doctor if you are at risk and develop a plan for yourself. The effects on the “invisible” patient can be devastating. Grieving the loss of a loved one when they are still here.
The most important thing to know, is you are not alone. If you’re taking care of a loved one with Alzheimer’s take time for yourself. You may want to seek counseling or join a support group. Just know you are not alone.

Alexandra

I have been running for quite some time now.  The great thing about running for me is that it allows me to be open to my creative side.  Allowing me to be more aware of my surroundings. However, in the same breath I am aware of the dangers women face running alone.   (There are no statistics tracking female jogger deaths specifically.) Take the infamous Central Park jogger case, when a beating and rape put a 28-year-old woman into a coma for 12 days, captivated America for years, and led to one of the most notorious false-imprisonment cases of all time. More recently, a string of three brutal unrelated deaths have made the news. Alexandra “Ally” Brueger, a 31-year-old nurse from Michigan, was shot and killed during an afternoon jog. A few days later, 30-year-old Karina Vetrano was found strangled after she set off on an afternoon run in Queens. Shortly after that, 27-year-old Vanessa Marcotte, a Google employee who was visiting her parents in Massachusetts, was found dead, burned, and possibly sexually assaulted. She, too, had gone out running that afternoon. That narrative also gave female runners a sense that certain behaviors could protect us: not running after dark and avoiding remote areas, for instance. But these women, were all out in broad daylight.

Here are some safety tips on how to protect yourself while running or walking alone, no matter where you are:

  1. Always be aware of your surroundings
  2. Never run in the dark even though attacks have happened in the day time
  3. Always let someone know where you will be running and how long you will be gone
  4. NEVER EVER share social media pictures with a location attached to it
  5. If you listen to music, use only one ear bud.  This allows you to hear anyone coming up behind you
  6. Don’t wear a ponytail.  Silly as that may seem, someone can use that to take you down to the ground.  Instead hide your hair in a baseball cap
  7. DO NOT RELY on your cell phone for help, the number one item that will be taken away from you.

I use our GPS tracker watch, it has an SOS button on it that is easily accessed to press.  There are 18 programmable numbers on it. There is real time tracking. It looks just like a watch! There is a special mechanism to the watch, that we will not divulge unless we speak with you.  We do this, so it does not end up in the wrong hands. There is an app for IOS/Android so your family/loved ones can know where you are while running or anytime when you are alone. It is extremely important that we place an added layer of security to our everyday living.  Our world has changed, and we have to protect ourselves from harm.

Running remains my favorite activity in the world. It’s a profoundly solitary sport, one that forces me to be aware of both my mind and my body in a way that nothing else does; one that manages to be simultaneously meditative and exhilarating. Best of all, it’s remarkably freeing — or as close to freeing as I can get in a world where, to survive, women must constantly alter our behavior in the interest of our own safety.

Please share your stories with me.