Not to be out done by the Navigator development team, the SCANS team is continuing their "rolling release" of V1.3.  SCANS is the Senior Care Navigation System that provides geriatric care managers with expert advice, best practices, and practical tools to help families with the well-being or their parents.

The June edition of V1.3 includes 26 new resources, process, or tools.  The list includes items like these:
  • Death in the Home – Information for Caregivers
  • Tips for Alzheimer Caregivers
  • Delirium vs. Dementia
  • Transitioning an Individual with Dementia into a Facility
  • Member Portal Instructions
  • Continence Education – Constipation
  • Urinary Incontinence – When to Seek Immediate Medical Attention
  • Crime Prevention Education for Older Adults
  • IADL (Independent Activities of Daily Living) Education
  • Physical Therapy and Occupational Therapy
  • My Medicare Matters
  • Advance Directives for Mental Health Treatment
  • Drug Review and Side Effects
  • Geriatric Friendly Pharmacy
  • Medicine Reconciliation:  Brown Bag Consultation
  • Feeding Tube Education
  • Special Diet Needs Education
  • Defibrillator Education
  • Diabetes Education
  • Fibromyalgia Education
  • Pacemaker Education
  • Physician Planner Case Note
  • Alternative Living Options Education
  • Speech Therapy Education
  • Social Participation Barriers
  • Social Support Plan
These tools are available to the clients of My Health Care Manager and our affiliates.  Some of the content is also discussed in our blogs and can be accessed for free.  Check out Natalie Langley's blog titled "Healthy Aging".  Natalie is one of the principle researchers and authors of the tools in SCANS.  Her blog covers a holistic look at healthy aging and senior well-being.

Yellow brick roadMy Mother has lived in an Assisted Living facility for almost two years.  In many ways she has adapted well and I think she is comforted by the fact that I live nearby.  However, as her Alzheimer Disease progresses, I often hear “I want to go home.”  In talking with others, I’ve learned that this is quite common... yet hearing it tears at the heart of every caregiver I know. 

Following are some tips you may find helpful when the senior in your life tells you repeatedly:    “I want to go home.”

  • Remember that it is very common for a senior to repeat this request often.  Usually they mean the home from 60 or 70 years ago, not the one they left most recently.
  • “Home” means different things to different people – love, security, belonging, safety.  When a senior asks to “go home,” try to determine if there is an “unmet” need (i.e. need to feel safe, need to belong) and try to fill that as best you can.
  • Don’t refer to the senior’s current location as home.  Point out that they are staying there for “awhile.”  When they say “I want to go home” tell them you will talk about it and name some future date.
  • Find a good reason for them to stay where they are – i.e. people are nice, good food, close to family, nice apartment, fun activities and try to get them to “buy into it.”

As a caregiver, the responsibility for decisions regarding your parent’s care falls to you.  Often you wish you could discuss the options, choices and next steps with your parent, just as you discussed so many choices in the past…where to go to college, where to have your wedding reception, which neighborhood to select.  But parents with Alzheimer’s cannot help with current decisions as their ability to reason, compare and choose has been ravaged by the disease.  Sadly, dementia robs them of their ability to chart their own course.

So, what should caregivers do when faced with a variety of paths – how do you know how to choose what is best for your parent? How do you know when a parent’s living environment is no longer safe? How do you know when a parent needs more assistance? 

Here are a few suggestions:

  • Pay attention to your parent they may be confused, but they will give you clues when things aren’t going well.  They may seem more agitated, confused or disoriented.  Their routine may change and a situation that has worked well in the past, now poses problems.  For example, they may no longer want to eat dinner because they either can’t remember where the Assisted Living Dining Room is located, or they are afraid to leave their apartment.  
  • Check in with their caregivers – have other family members, a companion, assisted living staff or adult day care workers noticed a change in your parent?  Are they concerned? 
  • Take your parent in for a check-up – have the Doctor evaluate your parent and review their medications and mental and physical health. 
  • Review your parent’s ability to complete Activities of Daily Living – things like bathing, dressing, continence, mobility, feeding.  Has there been a change in their ability to do these things?
  • Engage a Geriatric Care Manager – have them conduct an independent assessment to provide an unbiased view of the situation.

Once you have gathered the above information, spend time thinking and talking to others you trust about the findings.  Choose the next step based on what you think is best for your parent at this moment in time.   For instance, if you determine that they need more assistance, think about the pros and cons of providing additional assistance in their current environment vs. moving them to a new environment such as a Memory Care Unit.   There is no “right” decision.  Take comfort in the fact that you have been both thorough and thoughtful when you made the decision.  Always remember that your parent is better off when you address concerns as they arise vs. postponing decisions until a crisis arises.



The SCANS content team headed by Jean Bandos along with the development team announced today that the SCANS Version 1.3 - May release is now available.  SCANS Version 1.3 is a major content release to the SCANS Knowledge Base.

In order to make more real-world tools for eldercare available more quickly, Jean and the team have devised a "rolling release".  For 3 months beginning in May another group of resources, processes, and tools will be made available to geriatric care managers at My Health Care Manager and our affiliates.

The May release contains 57 new and/or revised resources, processes and tools.  Some sample items include: 
 

  • Behaviors and Alzheimer's Disease
  • Grief Education
  • Activities of Daily Living Education
  • Depression and Alzheimer's disease
  • Early Stages and Impact on Health
  • Memory & Cognition Questions
  • Memory Care Unit Checklist
  • Memory Care Unit Education
  • Mild Cognitive Impairment
  • Sobriety Programs Resource
  • Handyman Resource
  • Private Handyman Contractor Checklist
  • Smoke & Carbon Monoxide Detectors
  • Daily  Money Management Education
  • Financial Planning Education
  • Trust Education
  • Verifying Funeral Arrangements
  • Veterans Benefit Information
  • Elder Law Resource & Checklist
  • Medication Management Procedure
  • Medication Reconciliation
  • Polypharmacy
  • How to Find a Pain Specialist
  • Pain Education
  • Pain Resources
  • Pain Visual Analog Scale
  • Arthritis
  • Heart Failure
  • Hypertension Education
  • Family History - Cancer Education
  • Family History - Dementia
  • Family History - Diabetes Education
  • Family History - Heart Education
  • Seat Belt Education
  • Cataracts Education
  • Glaucoma Education
  • Hearing Aid Education
  • Sensory Changes
  • Assistive Devices
  • Hospice Education
  • Spiritual Connections
Stay tuned; the June release will include resources on incontinence, cognition, supporting services, and more processes.

Be sure to visit Jean's blog, click here.

As a follow up to my last blog, if you missed “The Alzheimer's Project", the groundbreaking HBO documentary series aired May 9 – 12, the films are available online at www.alz.org/HBO and also at http://www.hbo.com/alzheimers/. They will also air again throughout May on HBO and HBO2.

If you were able to watch, please share your thoughts about ‘The Alzheimer's Project’ at http://alzheimers.infopop.cc/eve/forums and here on my blog.  The Alzheimer’s forum page has several opportunities: not only can you discuss the project, but it also has forums for those who have Alzheimer’s Disease, questions about medication treatments, caregiving, and forums in Spanish.

Remember that Alzheimer's is not a normal part of aging – it's a progressive and fatal disease.  Every 70 seconds someone develops Alzheimer’s and now Alzheimer's disease is rated the seventh-leading cause of death.

If you are assisting someone with memory loss or Alzheimer’s Disease, speak with your loved one’s health care provider and visit www.alz.org to learn more on how to support yourself and your loved one.

HBO is doing a documentary series on Alzheimer's starting this Sunday, May 10.  Titled 'The Alzheimer's Project', the series is comprised of four parts.

  1. The Memory Loss Tapes
  2. Grandpa, Do you know who I am? (with Maria Shriver)
  3. Momentum in Science
  4. Caregivers
There is also an accompanying book and DVD, as well as supplemental series of 15 videos focusing on the research and medical side of Alzheimer's available to stream online.

A national survey completed in conjunction with The Alzheimer's Project found that 54% of the US population has been affected by some way in Alzheimer's.  With such a huge impact on our society, I encourage health care providers, caregivers, seniors, and anyone else affected by Alzheimer's or a loved one's cognitive decline to watch this series.

The website has great information, but please make sure to ask your health care provider if you have questions.  A geriatric care manager can also help caregivers and seniors address issues associated with Alzheimer's and cognitive decline.

For more information on the series, visit http://www.hbo.com/alzheimers/index.html.
To watch the supplemental series, visit http://www.hbo.com/alzheimers/the-supplementary-series.html.

Caregivers for those with cognitive decline or Alzheimer's can find free help from their local Alzheimer's Association.  Whether you're looking for ways to better communicate with someone with Alzheimer's, ways to reduce your caregiver stress, or even seeking other local resources, the Alzheimer's Association is a great place to start your search.

Local Alzheimer's Associations often give conferences for caregivers.  Topics often covered include communication, home safety, and well-being.  Presenters have extensive experience in geriatrics and caregiving topics.  In addition, you can connect with other caregivers for support.

There will be a caregiver's conference on May 15th in Indianapolis, and I encourage you to attend.  For more information, visit the local Alzheimer's Association website

For information on events in your city and state, visit the national Alzheimer's Association website.


Indiana could soon pass a new law.  Silver Alerts are similar to Amber Alerts, but are for missing and endangered adults/seniors.  This proposition was put forth by Senator Pat Miller.  It would require the law enforcement training board to provide training in interacting with missing and endangered adults, including seniors with Alzheimer's Disease or dementia.  Silver Alerts could help thousands of Indiana seniors who become lost.  The Silver Alerts would be issued by the police and broadcast among media outlets.  Currently, there are 10 other states who have a similar law.  House Sponsors include Rep. Dennis Avery (D-Evansville) and Rep. Mike Murphy (R-Indianapolis).  The House of Representatives passed the legislation 98-0.  It is now on its way to Gov. Mitch Daniels for consideration.

A big topic floating around the aging world is the idea of healthy aging.  We see everyday in the media how important it is to eat healthy, quit smoking, exercise our minds and bodies, and stay fit.  For older adults, it is important to continue to live a healthy lifestyle.  I once read an aging article that said, "exercising everyday keeps the doctor away".  
                                             
Exercise is important for those who have heart conditions and can help them maintain their independence longer.  Many assisted living facilities offer aerobics, exercise, or even tai chi classes.  While exercise directly impacts your physical health, research has also shown that staying active impacts cognitive health.  The Alzheimer's Association states that what is good for the heart is also good for the brain.  Ideas for exercise include:  taking a dance class, walking to the store, parking further in the parking lot at the store, and gardening.  For more information about seniors and exercise please visit the Centers for Disease Control website for physical activity for older adults:   http://www.cdc.gov/physicalactivity/everyone/guidelines/olderadults.html


**The following post is from my guest blogger, Natalie Langley, MSW.  She is a Geriatric Care Research Analyst for SCANS (for more on SCANS, please see Eric Tinsley's blog by clicking here).**

There are several barriers that can impact the older adult’s ability to achieve good nutrition.  The following checklist can help to ensure older adults are getting the proper nutrition. 

Determine if there is a problem that impairs their ability to eat:

  1. Have a physician/pharmacist review side effects of medications.
  2. Are their teeth/dentures in proper condition?
  3. Are there any physical limitations relating to pain and arthritis?
  4. Is there a decrease in a sense of smell and taste?
  5. Are finances a barrier?
  6. Is their eyesight failing?
  7. Do they have weakness and are not able to carry grocery bags?
  8. Is forgetfulness or dementia present?

As a caregiver or an older adult, make sure to enlist people and programs within the community to help with meal assistance.  One way is to contact your local Area Agency on Aging for meal programs for older adults, such as Meals on Wheels.  This program offers deliverable meals for older adults in their homes.  For a list of local Area Agencies on Aging, you can visit www.n4a.org

Another good resource for meal assistance is Seattle Sutton's.  This is an Illinois based company, but they have locations everywhere.  They offer healthy, prepared meals for a reasonable price.  To find a location near you, please visit their website at http://www.seattlesutton.com/.
 


In working with seniors and their families, end of life care issues always come up.  It is a hard decision for the senior and families to make end of life care decisions, for example, whether to continue treating an illness or disease, implementing palliative care, or inserting a feeding tube.  These difficult decisions can often be made ahead of time by the individual via a Living Will.  Living Wills allow individuals the ability to document their end of life wishes, treatment preferences, and care options.  Any person over the age of 18, who is considered competent to make their own decisions, is able to complete a Living Will.  Living Will forms can be found at your local library, the internet, or an attorney's office.  Some states develop and recognize state-specific Living Will forms.  To download your state's specific advance directives form, check out Caring Connections.

The most difficult end of life decision to make is whether to insert a feeding tube or not.  A recent article from Health Behavior News Science, addresses recent studies on this issue.  For people with Advanced Dementia or degenerative dementia, the body is unable to metabolize food properly due to the brain damage.  The biggest fear for families is wondering if their loved one is "starving to death" or experiencing pain from hunger and thirst.  Hospice studies have indicated that few people experience this type of pain.  And if pain is exhibited it is often alleviated with palliative care and pain management.  In my career, I have had several physicians state that due to the brain damage and with the body going through the end of life process, that our bodies do not feel hunger or thirst.  But will we really ever know the answer to that question??  My motto as a geriatric social worker has always been, if I've made someone as happy and as comfortable as possible while they are here with us then I've done my job.  What I do know is that the decision to place a feeding tube is an individual decision and each person's situation should be considered separately.

For more information on studies, reviews of health care interventions, and evidence of clinical trials, check out the Cochrane Collaboration.

Walker Wonder:  Brighten a Walker, Brighten a Life

The Alzheimer's Store:  Unique products for those caring for someone with Alzheimer's

Wellhaven:  Gifts for seniors and boomers

Senior Shops

First Street:  For boomers and beyond

Elder Luxe:  Age well

Emerging Focus:

Where is the focus?  An emerging topic is that the early detection of Alzheimer’s Disease will lead to early intervention. Early interventions with improved therapies provide the greatest opportunity to delay or stop damage to the brain.  With that in mind, a new role of a condition known as Mild Cognitive Impairment (MCI) is involving. “A person with MCI has problems with memory, language or other essential cognitive functions that are severe enough to be noticeable to the individual and others, but not severe enough to interfere with daily life.” (Alzheimer’s Association

The American College of Physicians reports that mild cognitive impairment affects about 20 percent of the population over 70. Many people with mild cognitive impairment eventually develop Alzheimer's disease.  For more information on MCI, click the following links for MCI-specific info from the Mayo Clinic  and the Alzheimer’s Association.

Continue to watch for diverse varieties of treatment possibilities that scientists are exploring for Alzheimer’s and MCI – the hopes are to slow or even reverse the disease progression.  A great resource for the latest breaking news is the Alzheimer’s Association.

Alzheimer's AssociationAccording to the latest report from the Alzheimer’s Association, the total health care costs are more than three times higher for people with Alzheimer’s and other dementias than for other people age 65 and older. It is reported that there are 5.3 million Americans living with the disease and every 70 seconds someone in America develops Alzheimer’s disease. By 2010, it is estimated that there will be nearly a half million new cases of Alzheimer’s each year. Currently we know that Alzheimer’s is the sixth leading cause of death in the country, surpassing diabetes; it is the fifth leading cause of death among individuals 65 and older.

My next blog will cover the newest focus for Alzheimer’s: early detection and intervention.

My Mother has declined precipitously during the past six weeks.  We’ve watched helplessly as her confusion increased, her mobility worsened and her sense of time and place evaporated.  Yet, a routine Doctor’s  appointment and lab work did not reveal any treatable physical changes.
Yet, everyone around her noticed the decline – my sister, the companion, her Health Care Manager (a geriatric care manager from My Health Care Manager) and the nurses at the Assisted Living facility.  We were saddened to see my Mother struggle with this new stage of life and worked together to offer additional support.  We all ASSUMED that this was the natural progression of the dementia.

Our Health Care Manager was puzzled by what my Mother was experiencing.  She had worked with many, many seniors and felt that my Mother’s cognitive decline did not fit the typical pattern.   She felt that the changes my Mother started to experience happened overnight vs. being a gradual process.  It bothered her, so she sent a letter to my Mother’s physician and explained her concerns.  This led to a conversation between my Mother’s Doctor and the Health Care Manager.  As they reviewed my Mother’s case, a light bulb went off.  My Mother had a medication change in December….was it possible that the med change was negatively affecting her current physical and mental state?   Was it possible that the changes we’d noticed were not necessarily caused by the next stage of the dementia, but a medicine interaction? 

Thanks to the Health Care Manager’s detective work and follow up with the health care provider, we’ve stopped the new medicine that was added to my Mother’s care plan in December.  We have our fingers crossed that we will see a difference and that some of the decline will be reversed.  It is possible that there are other causes – a series of small strokes, for example.  But for now, we are addressing what the Doctor thinks is the most likely cause.

We’ve learned a good lesson.  Never assume that even small changes are “normal” …question everything!  And seek professional help whenever necessary. 

 



Do you find yourself getting frustrated or trying to figure out how to communicate with your loved one with dementia?  People with dementia are also struggling to communicate and may be frustrated as well.  For caregivers, we have to remember our loved one's brain is no longer what is used to be.  It's smaller due to shrinkage, and cells are being destroyed by the disease.  Overall, humans communicate only 10% verbally.  So imagine trying to communicate with someone who's verbal communication skills are less than 10%.  That can be a tough feat!  This frustration of trying to communicate could be anxiety producing for both the senior and the caregiver.  
Staying calm is important.  90% of the way we communicate is nonverbal.  Keep in mind that people with dementia will better understand you when you communicate nonverbally e.g. gestures, showing them what you want to do, facial expressions, gentle touch, etc.  Because people with dementia rely on emotions and feelings, they will respond to your emotions.  So if you are rushed or anxious, they will pick up on that emotion and will respond by being anxious themselves.
Try to identify what is causing their anxiety.  Are they tired?  Are they hungry/thirsty?  Are they uncomfortable?  Do they have to use the restroom?  A lot of times, it is trial and error for caregivers in trying to communicate with their loved ones.  But, keep up the good work!  Your loved ones appreciate your calm and loving nature!

People with dementia are not always able to communicate that they are in pain.  Therefore, it is important for health care providers, caregivers, and friends to recognize the signs and symptoms of pain. Remember that pain is treatable and pain should be addressed if it is suspected.

What should a caregiver look for?

  • Facial Expressions: Does your loved one frown or grimace, close their eyes tightly, wrinkle their brow or blink rapidly, especially in response to specific activities?
  • Verbalization: Does your loved one moan, sigh, grunt, ask for help or repeat a phrase, or become abusive?
  • Movement: Are they rigid or tense, fidget, rock back and forth, or do they resist movement?
  • Mental Status Changes: Have they become more confused?
  • Behavioral Changes: Does your loved one have changes in appetite, sleep patterns or changes in routines?  Are they combative or seem distressed? Are they more irritable?


Document when you see these changes occur.  Do the changes happen with a specific activity? Are the changes worse at night versus the morning? Do the changes get better after a specific activity such as eating or sitting in a specific position?

Bring as much information as you can to your health care provider.  They can work with you to evaluate the pain and determine a pain regimen that works for your aging loved one.


Family members are finding themselves in the "Sandwich Generation"...still working full-time, raising children, and caring for an elderly parent.  Alzheimer's Disease costs businesses "more than $67 billion dollars each year."  $40.5 billion of that cost is due to "family caregiving resulting in absenteeism, productivity losses, and replacement worker costs."  These statistics are a red flag to businesses of what is to come...the amount of people living longer is growing and the number of individuals with Alzheimer's Disease will more than double in the next 30 years. 
Family members who provide some form of care to an aging parent are more at risk for developing physical illnesses and stress which can affect a person's mental health, overall well-being, and work productivity. (Teepa Snow, Dementia Care & Training Specialist)

Providing a safe, structured, and supportive environment to the person with Alzheimer's Disease can be difficult especially if one lives in an area with limited resources.  Caregivers are often trying to handle "home situations" during the day while at work...dealing with insurance companies, managing home care staff, running home on your lunch break to check on mom or dad, etc.  US businesses are starting to realize the tremendous effort families are working with in being a caregiver.  Some businesses are adding additional resources to their employee benefits program to assist family caregivers. 

As a caregiver, is the company you work for equipped to provide assistance and resources to you?  I'm interested to hear how businesses are addressing this important issue.

**The following post is from my guest blogger, Natalie Langley, MSW.  She is a Geriatric Care Research Analyst for SCANS (for more on SCANS, please see Eric Tinsley's blog by clicking here).**

Bathing is a challenging task in Alzheimer’s care with which caregivers have trouble.  I’ve heard caregivers say their loved one just refuses to take a shower or becomes agitated in the bathroom.  Many caregivers become frustrated because they know their loved one hasn’t showered in days and is still wearing the same clothes. 

One thing we have to remember is that as the disease progresses, the person is losing brain cells and cannot remember short term events.  Often, they are placed in big showers where water is coming down at them.  They are scared because sometimes they do not even know what water is - much less what is going on.  The bathing experience can often be very frightening for the individual. 

I would like to share some tips that may be helpful in getting your aging loved one with Alzheimer's to bathe.
  1. Keep the bathroom warm and inviting. 
  2. Refer to the shower the way the individual with the disease refers to the shower.  Generations ago, people referred to taking a shower as “washing up”, “the wash room”, “sponge bath”, etc.  Rather than saying, “OK, Mom, it is time for your shower”, say “Mom, let’s go wash up before dinner.”  Learn what they called the shower back when they were younger, because they may be more likely to understand you if you use those terms.
  3. Provide towels for them to cover up for privacy and warmth during the bathing process.
  4. If they did grow up using sponge baths, try using that method.  Even though it may not be the method you use, that may be what the person with Alzheimer’s remembers and understands. 
  5. If the person doesn’t want to shower because they don’t want to change their outfit, buy several of the same outfits in the same color so they will be able to put the “same” outfit back on after they are clean.
  6. Include the person as much as possible during the bathing experience.  Give them a washcloth to hold on to.  This will allow them to think they are a part of the process. 
  7. Fill up the tub with only a few inches of water.  Make sure the water is not too hot – their skin may be more sensitive.
  8. Use a handheld shower head and make sure the spray is not too intense.  The harder the water comes out, the worse it could feel on their skin (since it may be sensitive).
  9. Offer praise to the person for their efforts in helping
  10. Have activities ready if the person becomes agitated, such as playing soothing music or singing their favorite songs. 
     

The following article is from Agingcare.com:  The Community for Caregivers and is in addition to the previous blog, Caregivers and Stress.

"Don't Let Caregiving Ruin Your Other Relationships
by Carol Bradley Bursack
In the 1970s, there were ongoing debates about whether a woman could balance a family with a career. The discussions centered on being a good wife, mother and employee.  The question seldom posed, in those days, was how, besides being a wife, mother and career woman, could a woman also be a good daughter?

Today, we hear about the toll elder care takes on families as routinely as we heard the former arguments in the ‘70s. Adult children are being faced with choices (or seemingly, assignments) they never thought about before. They are raising children or teenagers and holding down a job, when suddenly they find that their aging parents need an ever-increasing amount of attention.


Why is elder care more of an issue now than in the past?  For one thing, people are living longer than they used to and, often, they are not living with good health. Yes, we all love to point to the 93-year-old guy out there playing golf everyday, and these people exist. I know a couple of elders like that and they are a joy to behold.

However, many elders today are stroke survivors, or are suffering from diabetes, lung problems or dementia. Sometimes they have a combination of these ailments, and others, which likely would have caused death even a decade ago. Now, medical advances provide lifesaving options. Many of these people live – some even living fairly good quality lives – but they need assistance from family or paid attendants.


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 Another piece of the puzzle is that many people have chosen to have children at a later age, thus putting them in a position where they have young children and older parents at the same time. This can be a delightful combination, as long as the elders are reasonably healthy, but when they are not, the adult children of the elders, also parents of young children, can be faced with very difficult choices. These are the people now famously known as the Sandwich Generation.

Whatever the circumstances are that propel people into elder care, the problems that can come from it are myriad. All you have to do is click on the Agingcare.com community forum and you’ll quickly see that many caregivers, both men and women, find themselves feeling pulled in so many directions that they can no longer find their soul.

They fear for their own health – mental and physical – as they try to take care of the needs of three generations, the most demanding often being the elders. Caregiving for a sick elder, especially one with dementia, can become so all-consuming that the caregiver’s other relationships suffer.

First to go is the time, or even the energy and desire, to maintain friendships. Even maintaining friendships that go back years can seem like just one more thing to do when a caregiver is so swamped with demands.

So, caregivers stop seeing friends, hence friends stop asking them to do anything fun. Friends get tired of being turned down. And caregivers forget that life was once fun. They are too busy giving care to everyone else to even notice the loss.

Then there are the children at home. I had two young sons when I started going through my two decades of elder care, seven elders total. One of my sons has multiple health issues. I believe I gave my sons as much attention and care as any mother could, but I was always torn. It seemed someone always needed me. A child was sick and an elder’s personal alarm was set off. What should I do? How should I handle it?

Or I’d just be having fun with my sons, and I’d get called away on an emergency. My sons got used to me telling them that we had to stop what we were doing, be it playing music, reading or a craft, because I had to run to Grandma’s and see what’s wrong, since her personal alarm was set off. Or I had to meet the ambulance at the emergency room, because Grandpa fell at the nursing home and broke his arm. Or I needed to reschedule my uncle’s doctor appointment, because he was had gotten the flu.

Certainly, it doesn’t hurt children to know that elders need care, and children need to share their parents with the older generation. Likely, my kids had a little too much of that, but they survived. However, some children have much tougher issues than mine had to face. Some have grandparents with dementia living in their home, verbally or even physically abusing them. Or a single mom and her kids find it more economical to live with the grandparents, but the grandparents end up sucking up all of Mom's time. The parent – the caregiver to generations – can’t see a way out, so the family stays. But the relationships with the children are damaged.

And then there are the marriages. I hear from many caregivers who have supportive spouses, but I also hear from many who do not. The spouse feels neglected. The spouse never liked the elder, and now that the elder needs a lot of care, the spouse becomes even more resentful. The stress in the marriage can be intolerable for both sides. Marriages can and do break, under the stress of caregiving.

How much do caregivers owe their aging parents? Do they owe their health, their financial future, their family relationships? Where does “honoring your parents” begin and end?

I don’t believe anyone owes their own health, their marriage or their children’s emotional well-being to the elder that raised them. In most cases, the elders, if they could think straight, wouldn’t want that kind of sacrifice made for their benefit. However, often they’ve gotten to a point where they don’t recognize what they are demanding of the caregiver, so they resent not getting every need met and make that resentment well known.

This is where caregivers must take a stand. They must look for outside resources such as their state aging services for some direction. They must learn to balance their love and their time, giving as much care as possible to the elder, yet making sure that they have time, patience and energy for their children, their spouse and even their friends. If they don’t do this early on, breaking the pattern will become harder, though not impossible, as time passes.

Certainly, if the elder’s life is coming to a close, the whole family should gather around in support. But if elder caregiving is a long-term situation, the caregiver should look for balance. She needs to set boundaries as far as the elder care goes.  If she does not, all relationships that matter will be damaged, even the relationship with the elder. The caregiver who feels she has given up everything for everyone else will find that no one got what they needed. If the elder care situation sucks the life out of all other relationships, everyone loses.

For over twenty years author, columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Because of this experience, Carol created a portable support group – the book “Minding Our Elders: Caregivers Share Their Personal Stories.” Her sites, www.mindingourelders.com and www.mindingoureldersblogs.com  include helpful links and agencies. Her newspaper column, “Minding Our Elders,” runs weekly, she speaks at many caregiver workshops and conferences and has been interviewed by national radio, newspapers and magazines. She is the moderator of the AgingCare.com forum."