Baby Boomers, like me, are often referred to as the Sandwich Generation.  We often find ourselves caring for children and caring for parents at the same time.  In my case, my child is grown, so I don’t experience this on a daily basis, just once in awhile.

Several weeks ago I became a Grandmother to beautiful Ava Lane.  A precious baby, born in Washington DC, my son and daughter- in-law’s first child.  I eagerly made plans for my first “Grandmother Visit” …..one that will be oft repeated in the months and years to come.  I called USAIR, scheduled time off from work and bought lots of cute, pink baby clothes.  But making a trip to DC meant leaving my Mother “on her own” in Indianapolis.  Not that she is really on her own, as she lives in an Assisted Living facility, but it did mean I wouldn’t see her for a week.   This made me uncomfortable, as I typically see her several times per week.  I truly did feel like a sandwich then – being cut in half!!

Thankfully, I have a caregiving support network in place which allowed me to make the trip without worry.  I made arrangements for my Mother’s Geriatric Care Manager to visit and call while I was away.  Additionally, the companion stopped in twice in my absence and a good friend made a visit too.   I was fortunate to be able to enjoy a joyous time with my family, knowing that I had “people on the ground” in Indianapolis to look out for my Mother and who could be available in case of an emergency.  My peace of mind was greatly enhanced by their assistance.

I encourage everyone to establish a caregiving support network.  It is just not possible to go it alone.  I returned from my “Grandmother” trip refreshed and happy and know that by taking good care of myself, I’m better able to care for my Mother.

How should a caregiver or a senior get started with this idea of a Personal Health Record (PHR)?  If you've been following my Blog so far you can already guess - The list of Medications.

The key elements to include are:

• Medication Name (Remember to include Over The Counter (OTC)medications and supplements, as well.)
• Prescription Number (if applicable)
• Dosage
• Frequency
• Route
• Prescribing Physician (if applicable)
• Refill Date
• Number of Refills, and
• Any Supplemental Information (It's often helpful to include the reason for taking the medication, special instructions, and so on.)

To download a simple excel spreadsheet you can use Click Here. 

Often families struggle to get these lists made accurately.  It can be very difficult to get complete and accurate information if your loved one is face cognitive decline, memory loss, or even simply struggling with declining eye sight.  This is especially true if you are living a long distance from one another.  A Geriatric Care Manager or a health professional can often help.

Memory loss is typically the first sign of dementia, but what is dementia? When most people hear dementia they think of Alzheimer’s.  Alzheimer’s disease is the most common type of dementia. But there forms of dementia, such as vascular which affects approximately 15 -25% of dementias.  With vascular dementias the mental function is generally damaged by multiple small strokes and unlike Alzheimer’s, it usually appears suddenly.  Risk factors for vascular dementia include high blood pressure, high blood fat, diabetes, smoking, and old age. Vascular dementia is also more common in men than in women.

Dementia simply is that there is a problem with the brain that makes it hard for a person to remember, learn and communicate. As the dementia progresses the individual may have disruptive behavior and others. Remember with the first signs of memory loss, contact your primary care physician. If you are unsure of what questions to ask your physician, contact a geriatric care manager such as My Health Care Manager, www.myhealthcaremanager.com who will assist you in preparing for a discussion with your physician.   For more information on the types of dementia contact the American Geriatrics Society.  www.healthinaging.org . 

The admissions process was handled well at the SNF, and we met the director, marketing liaison, and director of nursing in a welcoming visit.  Thankfully Mother came in during the week, as many of these managers are often not available on Friday evenings, or over the weekend, the interval following frequent Friday afternoon discharges from hospitals to geriatric care facilities.  But the first night experience was still ahead, and my experience in care management was only beginning.

Visiting a sobbing Mother the next morning, I learned that she thought help would arrive quickly after she pushed her “Help” button, and it didn’t come for over an hour after her 4am page.  Her accident was totally avoidable, but staffing during third shift was so low that timely rounds and responses were nearly impossible.  After a one-on-one meeting with the director and a frank discussion of expectations and responsibilities, her page was answered promptly from then on.  Fortunately we were right there and not timid in asking for improved service.  My thoughts now focus on those families that don’t have the good fortune of being in the same city during a crisis or rehabilitation.  Eldercare from fifty or over a thousand miles away nearly always stresses both caregivers and their parents sometimes beyond belief.

Learning that Medicare covered the first 20 days in the SNF when preceded by 3 nights in the hospital, we concentrated on making her stay as comfortable as possible.  We quickly moved in her credenza and chair from her home, her TV, and her CDs and stereo.  This turned out to be a great idea, and others facing a similar situation should seriously consider doing it – even if the SNF doesn’t encourage it.  Next came physical therapy (PT) and occupational therapy (OT) to increase her mobility.  Luckily she didn’t need speech therapy (ST).  PT was performed by in-house employees (it is often outsourced), and all went well toward her 30 step benchmark test.

For more information on Medicare coverage of Skilled Nursing Facility care, please click here.

Standing alone in her closet, my then 91 year old Mother’s femur suddenly broke and she fell.  Alone, and up to that moment living well independently in her home, she pulled herself to the phone and made the 911 call.  My wife and I were 2,000 miles away when the call came, and the next flight out got us back to the hospital just after the orthopedic surgeon had spiked her femur and placed an artificial hip cap.  Up to that point, all of the decisions were made for us, and thankfully they were good ones.  Now it was our time, with no map or experience, to navigate the health care maze that older adults and their families have to face alone.

The hospital’s case manager met with us and advised that Mother was going to be discharged after her third night (afterwards, but not at the time, it was clear that her capitated Medicare reimbursement would reach its end so it was time to go) to a rehabilitation facility that we could choose from a list she provided.  Miraculously, a skilled nursing facility (SNF) sales liaison appeared and assured us all details would be handled and a bed awaited Mother.  We were lucky.  Later we learned in another experience that ongoing relationships with the SNF sales liaisons and the case/discharge managers are well lubricated relationships – but thankfully referral fees are illegal.  But the big questions of how well matched the SNF was for Mother, the short or long-term nature of the facility (a big factor in short term rehab motivation), in or out-of-plan for supplemental insurance coverage, the staffing ratios of the SNF (patients divided by nurses and other skilled assistants), and the state’s and Medicare’s results from surprise audits were lost in the emotion of the family decision.

We’ll pick up with the first night in the SNF in my next blog, and you will soon understand what motivated me to create and found My Health Care Manager, as a consumer-side rather than provider-side, professional advisor for older adults and their families for navigating the issues and options of aging and eldercare.  But, in the meantime, please share your experiences and advice as a caregiver or senior from similar encounters involving home safety issues, falls, or unexpected hospital stays.

“Taking Steps to End Alzheimer’s” was extremely successful in Indianapolis. My Health Care Manager's Team stepped up and supported this event, not only financially but in the spirit of raising awareness.  It is estimated that there are 4 million Americans with Alzheimer’s and that number is expected to grow dramatically impacting millions of caregivers across the country. What is one of the most important things for caregiver to do. You should identify Alzheimer’s disease as early as possible and take care of yourself.   Remember the onset of the disease is gradual with loss of short-term memory, mood and/or personality changes. Your loved one may have difficulty finding the right word or not able to recognize objects, he/she may forget ordinary things like a pencil, turning off lights or the stove, closing windows, or locking the door. Be aware as a caregiver that this disease can cause emotional, psychological, and physical problems- causing social isolation for the caregiver as well as their loved one. Always remember, that to be able to take care of your loved one, you need first to take care of yourself. Identify your support network and stay connected with others.  Several resources for caregivers are: The Alzheimer’s Association, www.alz.org ; education and referral center,s The Family Caregivers Alliance www.caregiver.org ; and the National Family Caregivers Association, www.nfcacares.org.

So what exactly is in a Personal Health Record (PHR)? 

You won’t be surprised to know that the answer varies depending on who you ask.  Let’s start by looking at what My Health Care Manager includes in its PHR.

We have identified 17 dimensions to examine as part of initializing a PHR.  These are:

1. Demographic:  General demographic information including but not limited too the senior’s current living and marital status; accessibility to bathroom, bedroom, and laundry; and work/volunteer history. 
2. Family: Family members deceased and living.  Family health history and availability.
3. Social support:  The family’s/friends’ level of support, communication techniques, and the senior’s engagement in social activities.
4. Representatives/Key Contacts: Individuals that the senior has identified to have permission to health and/or financial information, including the level of information they may access and the manner in which the information can be shared.
5. Financial:  The senior’s perception of his/her financial needs and if additional assistance is required to support health or alleviate stress.
6. Spiritual:  The senior’s perception of his/her spiritual needs and level of comfort/peace with current health status.
7. Legal: Arrangements for an individual to act on the senior’s behalf including the status and copies of the senior’s advance directives, funeral, and/or burial/cremation arrangements.
8. Insurance:  Current insurance information and identified gaps or needs for continued education.
9. Support Services:  Multiple service providers and the level of communication between the providers.
10. Caregiver Support: The stress level and needs of the caregiver.
11. Physical Health:  The senior’s past medical history, treatment plans, and current health status - capturing chronic illnesses, chronic pain, incontinence, weight loss/gain, nutritional status, and sleep habits.   
12. Functional Health Status:  The senior’s perception of and satisfaction with his/her health status while assessing the senior’s physical functional status including activities of daily living, balance, ambulation, assistive devices, and sensory status.
13. Emotional/Psychological:   The cognitive, emotional, and behavior status of the senior including screens for cognitive impairment, anxiety, depressive symptoms, and substance abuse.
14. Medication History:  Medications list, multiple providers, multiple pharmacies,   allergies, polypharmacy, and medication administrative needs. 
15. Home/Residential Environmental & Safety Assessment:  Visual assessment of the senior’s environment.  Assessing fall risk, elder abuse, disaster plans, fire/burn prevention, crime/injury, injury prevention, communication system, and support network.          
16. Preventive Health Activities:  Preventative recommendations and attending health screening activities. 
17. Wellness: The senior’s understanding of activities that promote improved health status such as wellness classes, tobacco use cessation, and/or intellectual stimulation.

This information can be gathered and assessed by an individual, a caregiver, or even a Health Care Manager.  We use a 3 ring notebook to collect and organize this information so that it can easily be updated and kept current.  The binder is easily taken along on medical provider appointments and is large enough to be difficult to misplace.

As our loved ones age, many face cognitive decline, dementia, or a diagnosis of Alzheimer’s.  The Alzheimer’s Association is doing all it can to help cure the disease.  While our blogs will discuss Alzheimer’s in more detail in the future, we wanted to call attention to the recent Indianapolis event promoting Alzheimer’s awareness.  On October 14, My Health Care Manager participated in the Alzheimer’s Memory Walk at the Indiana State Fairgrounds.  Over 1,800 people walked in support of the cause, and over $300,000 was raised through the generous donations from both companies and individuals.  We saw a lot of families participating in the walk, and would like to congratulate all of the individuals and teams who came out to support this worthy cause. 

I just came across a great book "Caregiving - The Spiritual Journey of Love, Loss and Renewal" by Beth Witrogen McLeod.  I've read the sections that apply to parental caregiving and saw myself in each page.  It was reassuring to read comments from other caregivers and benefit from their insight and experience.  It confirmed what I am already experiencing....that parental caregiving is not something I was prepared for...despite my experience caring for my son and a terminally ill spouse.

For with caregiving, comes a feeling of responsibility to make my Mother's days happy.  After all, wasn't it my decision to move her here when she could no longer live alone?  But after reading the book and discussing the situation with my Mother's Health Care Manager, I've learned that making my Mother happy is a completely unrealistic expectation.  So, I'm learning to be content with the "good" days, when her dementia isn't as pronounced and she takes great delight in going to lunch or for a drive.  I try to store these memories....not knowing what tomorrow will bring.  And on the days when she is unhappy and annoyed with the world, I let her vent...knowing that helps too...while recognizing it is just not something I can "fix."   

A friend here at My Health Care Manager sent me an article today with a very interesting statistic.  Science Daily reports that “Northwestern University's Feinberg School of Medicine has found that nearly 50 percent of patients taking antihypertensive drugs in three community health centers were unable to accurately name a single one of their medications listed in their medical chart.”  That’s right, not even ONE of their medications.  People simply can’t remember cryptic medical names, dosages, frequencies, and instructions for the multiple medications they’re taking.

It’s not hard to imagine that in a senior population where people may be dealing with cognitive decline that this statistic would be even worse.  Add to this, the fact that People over 75 take an average of 7.9 medications per day and someone struggling with health issues may be taking many more.  Nobody could remember all this, yet it may be one of the most critical elements to a geriatrician and other health care providers in determining treatment.

If you are a caregiver, encourage your loved one to get all their medications listed with the dosage, frequency, and any special instructions on paper.  Check it and make sure it's right.  If it's too complicated get help from a geriatric care manager or health professional.  Make copies for yourself, and all of the health providers your loved one contacts.

To read the full article “Patients Can't Recall Their Medications To Tell Doctors” Click Here.

At the center of the tools to help with geriatric care management you will find the Personal Health Record (PHR).  Wikipedia has this to say about the Personal Health Record: "The PHR is an ill-defined concept that has been developing over several years."  You'll be pleased to know that it doesn't stop with that.  In fact, it goes on to describe some of the key elements.

Perhaps the most common confusion is comparing the PHR to and Electronic Medical Record (EMR).  An EMR provides a hospital, doctor, therapist, or even insurance company with useful information.  It does little, however, to directly impact the people most affected - the senior and caregiver trying to understand a care regimen.  The few interactions with these systems which do exist, such as Explanation Of Benefit (EOB) statements, are often confusing and frustrating for aging parents.  Little or no information is available from these systems on care plans, medications, multiple disease states, life style, state of mind, living circumstances, support networks, caregivers, or the other complexities faced by seniors.  They do not represent a holistic picture of the environment impacting independence and quality of life.

The Personal Health Record (PHR) has developed in response to this need.  The PHR provides a way for individuals to build and maintain a health care record independent of their health care provider and easily understood by the family.  The reliance on the individuals' understanding of their health situation and care plans to populate the PHR means that great care must be taken with the completeness and accuracy of the record.

Most caregivers can build this PHR either as collection of paper documents or using a variety of computer tools.  A geriatric care manager can help by understanding all the materials to include, off loading the time consuming tasks from a caregiver, taking advantage computer tools, and providing a knowledgeable review of the contents.