I work for a Geriatric Care Management company – My Health Care Manager.  I work with RN’s that have in-depth geriatric experience.  I read about geriatric care and caregiving on a daily basis.  I even give talks on Caregiving to employer groups in Indianapolis. So, I thought I was prepared, I thought I was handling things well, I thought I was the “exception” – the caregiver who takes everything in stride, who gets enough rest and who effortlessly achieves work/life balance without giving it a second thought.  That was until last weekend.

Last weekend, I crashed.  I was tired and irritable, got in arguments and cried without provocation.  I had finally had it.  I was tired of trying to be all things to all people – a devoted daughter, an attentive friend, a dedicated employee and a caring partner.  I was tired of not finding time for myself, tired of not curling up with a good book, tired of doing too much laundry and tired of sorting through tax records.  I was tired of answering my Mother’s questions over and over, I was tired of grocery shopping and most of all I was tired of being responsible.   

With shock, I realized my energy was all but depleted and I couldn’t believe the depth of my tiredness both physically and emotionally.  So, I crashed and slept a lot, read books and a caring partner took me out to dinner, cooked dinner for me and took my Mother and me to lunch.  He stepped in to prop me up and I was grateful for his help.  By Monday, I was feeling much better and ready to face the world.

When I spoke with a close friend about what happened – she wasn’t surprised and pointed out that my Mother had moved here six months ago.  She reminded me that I had been on the go ever since. I hadn’t realized how much time had passed or even thought about it, but realized she was right.  No wonder I was tired and cranky and motion sick from my merry-go-round life.

It was a rude awakening and I realized that I needed to follow some of the advice I often share with others. So I expressed my concerns to several friends and two volunteered to take my Mother on an outing (without me).  I worked less.  I engaged an Accounting Firm to help me with some financial tasks.  And a very thoughtful partner continued to provide encouragement and support as well as “date nights” and flowers.  And, most importantly, I gave myself a break!  I read books in the evening and let the laundry pile up.  I treated myself to an extravagant spring purse and savored chocolate covered blueberries.  It didn’t take much to bring the balance back to my life, but I learned a valuable lesson. 

So, the next time I give a talk about Caregiving – I’ll admit I didn’t follow the rules espoused in my carefully crafted Powerpoint presentation.  I’ll share my story.  I hope my experience will help others recognize that trying to be all things to all people is a useless endeavor, especially when it means you lose yourself in the process.

Families caring for aging parents or other aging loved ones know that it can be a difficult balancing act- especially for the primary caregivers, who often work full-time.  In addition to being a caregiver, you want to spend time with your family and children, you want to keep your close friendships, you want to maintain your performance (and attendance) at work, and on top of all of this- you know you need to take time for yourself as well!  You can only be 'Superman' or 'Superwoman' for so long... taking time for yourself can help prevent caregiver burnout- a very real problem.

Employers are realizing that caregivers may need extra help, and many are stepping up to help their employees.  Some are offering flex-time to allow caregivers more flexibility, and others provide general referral services to things like adult day care centers.  Many are starting to offer even more extensive eldercare benefits to their employees, like access to our company (My Health Care Manager) and geriatric care management services... to read an article from the IndyStar on 'Balancing Burden of Eldercare', please click here.

Even though Mother was safe and secure in Independent Living (IL) in a Continuing Care Retirement Community (CCRC), we quickly realized that managing her prescription and over-the-counter (OTC) medicines was a challenge of its own.  With 10 prescription medicines and 4 OTCs, the variables of continuing supply with many expirations and prescription renewals combined with generic vs. brand names, dosages and time-of-day preferences were an overwhelming task for her … and her caregivers!  Fortunately, we devised a Weekly Schedule and medicine reconciliation program that allowed her to manage her own meds (with our assistance) that has now become a My Health Care Manager computer-based decision aid.  However, loading her pill tray every week and managing the time for her diabetes blood sugar tests and consumption of the pills became (and remains) an ongoing challenge.  Until becoming exposed to the issues of polypharmacy and older adults, I didn’t understand that normally-prescribed medicines and dosages affect many seniors differently – sometimes even causing symptoms such as confusion and loss of balance.  Even multiple medication regimes that were tolerated in the past can at any moment cause problems or unwanted symptoms.

When trying to get my hands around the multiple medications challenge, it became clear that no single health care provider had information on everything that was being taken by Mother.  Each knew what he or she had prescribed, but the rest of their knowledge was based on answers given to the common question, “What medicines are your taking?” at office visits.  Often confused over generic vs. brand names, dosages, and omitting OTC products, older adults often can’t be counted on to correctly answer this important question.  In developing My Health Care Manager’s suite of decision aids, we added a letter that the senior can choose to send to all of their health care providers (or only to the ones they designate). The letter lists the providers, their prescribed medicines, and any other OTC products being taken by the senior.  Several doctors have remarked that this simple summary of information is not available from any single source in our health care system.  You might try this important task on your own if you are immersed in eldercare.  We’ll have more on managing medicines in my next blog.

This week marks the 10th anniversary of the "Web Log" ... the genesis of the "Blog".  Of course, sharing ideas over the internet goes back to the dawn of the net itself.  The original idea of the then government sponsored network was to connect academic institutions and government agencies for the purpose of research and collaboration.

The Blog came along originally as a way to share information about where the "blogger" had been on the internet that day and what they had experience.  It quickly became an on-line diary of sorts.  This created the "stickiness" of the concept which since evolved in that dimension and many more.  

For My Health Care Manager the concept has been extended to caregivers helping aging parents and even seniors looking to improve the health and well-being.  Take a look at the blogs listed here - you'll find information on all of the most common heath challenges facing seniors and their families.  Some examples include falls, home safety, dementia, congestive heart failure, diabetes, and many more.

Having access to key thoughts on these challenges is valuable, but even more valuable is the key blogging concept of providing direct feedback to the author.  If you have a question of a comment on an article you've read, don't hesitate to use the "Comments" link right below the posting.  You can read comments and responses from others and best of all ask your question directly. 

If you don't see an article on the subject you're most interested in, post your question as a comment to the top entry in the Blog.  We'll answer the question in a future blog, comment, or email.

Today, many families are separated by distance and may see each other only a few times a year.  For those with aging parents, the holidays spent together can often be when adult children notice changes in their parents or loved ones.  You may notice that your mom seems forgetful or has had a change in cognition, your father has less mobility than the last time you saw him, or maybe your aunt's arthritis symptoms have worsened.  This can be a difficult situation, especially for long distance caregivers.

It's important that their geriatricians or health care providers be notified of changes in their behavior, symptoms, or overall well-being.  You can ask your loved one to accompany them to doctor visits, or employ the help of a geriatric care manager if you are unable to be there.  This will help you understand the situation, their diagnoses, and the treatment plans given to them by the doctor.  Encourage them to ask their doctor questions if they don't understand their doctor's recommendations or their prescribed medications, especially if they have multiple prescriptions.  Many of us are not familiar with the health care system, and it can be daunting.  Geriatric care managers can help explain the situation, help you weigh your options, and work to make sure that your loved ones are getting the quality of care that they deserve.

It can be hard to be a caregiver, and it can also be hard to realize that you may need to step into that role.  Don't be afraid to ask your friends and family for support. 

Have a wonderful holiday season.

The Alzheimer's Daily News website recently featured a short article on planning ahead for long-term care.  The source was our very own Indianapolis Area Vice President, Jeannie Keenan, RN.

Stories about this topic have been fairly prevalent in the news recently.  Many of the baby boomers have not planned ahead when it comes to providing care for their aging parents.  This could be paying for the cost of a retirement community or assisted living facility for their parents; it could be bearing the cost of bringing eldercare services into the home.

As our parents age, it can be difficult to address the often emotional issues of failing health, loss of mobility, cognitive decline, or just the need for a little bit of extra help or a smaller, more manageable living space.  Seniors may be reluctant to move and sometimes their adult children may not agree on what is best for their parents.  This underscores the importance of one of Jeannie's tips: Begin talking about the issues and the future early.  It is much easier to plan ahead than to be caught off-guard.  Planning ahead offers you more time to complete thorough research of the options, prepare financially for the future, and come to a decision with which the whole family can be pleased.

While this article focuses on the financial aspects of long-term care, many other variables can be involved in the issue including family dynamics, a parent's medical needs, a parent's wish to continue aging in place, or the adult children's desire to relocate parents closer to them.  A geriatric care manager can assist families as an objective third party, knowledgeable about local facilities and their capabilities and reputation, and familiar with all of the living options available for seniors based on their particular needs and desires.

Click here to read Jeannie's planning tips.  You may also learn more about Jeannie Keenan by clicking here.

Today, November 14, is World Diabetes Day- the first ever!  A resolution passed in December of 2006 by the United Nations created an annual United Nations Day for World Diabetes starting in 2007.  For more information on the day of recognition, please visit the World Diabetes Day homepage.

It just so happens that two recent studies have highlighted some of the issues affecting diabetics...

A diabetes study in the Journal of General Internal Medicine (set for the December issue) found that of diabetic seniors, 92% have at least one other chronic condition.  Even more worrisome: almost 50% have three or more other chronic medical conditions in addition to diabetes.  Seniors often make managing their other chronic conditions a priority and fail to properly manage their diabetes.  Many of the other conditions in seniors were triggered (or aggravated) at least in part by their diabetes.  The study stresses the importance of holistic care and taking a 'whole-person approach' to disease management. To read more about the study, click here.

For families, diabetes can affect multiple generations.  It's important to take preventative measures like eating a healthy diet and being active.  Once diagnosed with diabetes, it's important to take care of yourself!  A recent study in Australia suggested that more than 60% of those diagnosed with diabetes are wearing the wrong size shoe.  The wrong size of shoe could increase the chance of having foot problems, which (especially for diabetics) can even lead to amputation.  Please encourage those with diabetes in your family to have their feet properly measured to ensure they are wearing shoes the correct length AND width for their feet.  For more on this study, please click here.

It's important for seniors to work with their health care provider or geriatrician to manage their diabetes.  As the first study finds, many seniors have other chronic conditions in addition to diabetes.  For these seniors and their caregivers, a geriatric care manager or eldercare manager can partner with them and their other health care providers to approach their disease management in a more holistic fashion.

With the Hollywood writers strike, some of those writers may be treating this time as a much-needed break from the daily grind, as they are only required to work 20 hours a week manning the picket lines.  Unfortunately, as most caregivers know, caring for aging parents is a full-time job.  And this is often on top of the full-time hours put in at a paying full-time job.  It can often be tiring, emotionally and financially draining, and very hard.

For family caregivers that are in need of a well-deserved respite, don’t hesitate to ask for help...  Don’t hesitate to take a well-deserved break!  Accept the help that your family and friends offer or hire outside help to give you a few hours (or a few days) of help each week.  Caregiver burnout is real – especially for working caregivers.  Understand that you must first take care of your own health, and that asking for help or accepting help may make you a better caregiver in the long run by reducing your stress levels and allowing you some respite.

Providing care for a loved one, organizing their health care and managing appointments, checking on their home safety, spending time with them to prevent isolation, AND doing all of the other duties that come with the territory is extremely time consuming, sometimes confusing, and sometimes stressful.  If you find yourself ‘in over your head’ or just needing some advice, you may consider enlisting the help of a geriatric care manager.  Geriatric care managers can help facilitate communication within your family, give you advice on avoiding caregiver burnout, and offer tips and tricks to help you manage the health conditions of your loved one (whether it be helpful ways to remind your mother with diabetes to check her blood sugar, tips on communicating with a senior suffering from Alzheimer’s, ways to improve your father’s quality of life or help manage your uncle’s arthritis, or a better way to manage the multiple medications prescribed to your grandmother).

The Medication List is certainly the cornerstone for building a Personal Health Care Record (PHR) for yourself or for your aging parents.  Once you have the list be sure to share it with your geriatrician and other health providers involved in the health situation.

• Important names and numbers for physicians and other health care providers as well as emergency contacts.
• Heath Record Summary including medical conditions; key physicians; existence of important legal documents like Health Care Power of Attorney, Living Will, etc.; recent hospitalizations; and primary contact information.
• Legal and insurance detail identifying advance directives, dates, locations, legal representatives, end of life arrangements, Insurance policy information, and so on.
• Health provider details listing each physician, specialty, diagnosis, treatment plan, and key procedures.

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."