A Break for Writing

A look at my calendar tells me that I've scheduled a revised edition of my book, "Caring for A Distant Parent", to be published in October 2009. So I'm taking some time off from this Blog to work on that revision.

I'll be back with you later this year. Please continue to direct questions that you have to me and visit the Parentcare 101 website often for resources, organizational contacts, and Healthy Chocolate.

Until then, Blessings on your caregiving!

Advance Medical Directives--Resources

When I decided to write about Advance Medical Directives (AMD), I had not foreseen that this topic would be a centerpiece of the current public debate about health care reform. All the talk in the news, on blogs, and in town-hall meetings whether invoking the myth (not reality) of government "death panels" or debating the merits of insurer-paid consulting for end-of-life decisions--all this talk is about what we have been discussing over the last few posts.

Advance Medical Directives. A statement of what procedures and health care you would like if you are unable to physically express your preferences. As I've said before, these decisions are numerous and can be complicated. I've recommended that you consult all the resources available, such as a doctor, social worker or an eldercare attorney to help you decide what will be best. If your insurance coverage will pay for such consultation, all the better.

Let's look at some final subjects concerning the AMD.

Special Issues
• Both Your Parents Are Alive
If both your parents are still alive, it is possible that each of them, independently, may have written a Will and Advance Directives, but have never discussed these documents with each other, let alone with you. You may have to speak with each parent separately to discover where the documents are and their content.

• Second Marriages; Blended Families
The same communication caution applies if one or both of your parents have entered into second marriages.

• There may be communication barriers because you are related to only one of the couple. Your stepbrothers and stepsisters may face the same barriers with your parent.
• If there is some evidence that your parent and her spouse have prepared separate documents, it may be best to talk with each parent away from the other so that you can learn the truth about the documentation, not what your parent told his or her spouse.

• The Directives and Other Documents

• The Advance Medical Directives are always written in a document separate from a Will or a Durable Power of Attorney. The Directives may be attached to these other documents or the other documents may refer to them. The Advance Medical Directives may stand alone.
• A Will may be drawn up for a couple or for an individual. Advance Medical Directives, however, are always written for the individual. A Will for a married couple would then refer to two Directives.
• A Durable Power of Attorney is drawn up only for an individual, so it will refer to only one Advance Medical Directives statement.

Suggestions
Talking about the end of life is a difficult subject. In our society, we have been taught to fear death. However, death is a natural and inevitable part of life. In fact, it is the last rite of passage.

Keep the Advance Medical Directives in mind as your parent ages. Express your wishes. This may encourage him to express his own choices.
• If your parent is reluctant to be specific about his wishes, prepare your own statement and share it with him.
• If your parent is making out a will or trust, ask if Advance Directives will be part of it. Ask to see the final document.
• Remind your parent that Advance Directives are for her benefit, as well as yours. Whom would she choose to make such decisions if she can’t--a stranger? Or will she retain some control over the process by expressing her choices now?

Finally, if your parent refuses to discuss this and has not written any statement of Advance Directives, continue to seek out information. Conversations with your parent’s contacts, though difficult, may give you a hint of how your parent feels. Realize that your parent’s reluctance may come from deep sources of fear or discomfort of which you are unaware. Be firm, but not stubborn; be gentle and loving, but persistent in the face of her humanity.

To Read More
Laurence, Michael J. A Matter of Life and Death: Informed Advance Health Care Directives. Booklocker.com, Inc. 2007.

Schneiderman, Lawrence J. Embracing Our Mortality: Hard Choices in an Age of Medical Miracles. Oxford University Press, 2008.

“Advance Directives for Health Care Decision Making”. Tennessee.gov, Department of Health, Advance Directives. Accessed 8/17/2009.
Compares Advance Directives with Living Wills and Power of Attorney.

Aetna/InteliHealth Web Site. Under “Your Health” click on “More” > “Caregiving” > “Caring for Seniors” > See articles on End-of-Life Decision-Making and Living Wills. Accessed 8/17/2009.

Advance Medical Directives - 2

Hello, Readers!
I'm back from a short break. I spent some time at the North Carolina Outer Banks, a great place to watch the ocean and regain perspective on what's important in life. Hope you all had a good week.

In my last regular post, we began to discuss the Advance Medical Directives document. We talked about the types of decisions that you might be called upon to make, and the importance of knowing what each procedure stated in the Directives involves. Let's look at some other things to keep in mind for the Directives.

Forms for an Advance Directives Statement
The following sources will have forms available. Contact any one of these:
• A lawyer; particularly one specializing in elder law (see July's post on Eldercare Attorneys)
• The social worker at a hospital, hospice, home health agency, nursing home, or long-term care facility;
• The Attorney General’s Office in the state where your parent lives; or
• Caring Connections, a website created by the National Hospice and Palliative Care Organization (NHPCO), a national consumer and community engagement initiative to improve care at the end of life.

The Spiritual Side
In caregiving, especially in long-distance caring, there is a possibility that you, or your family, may not be with your parent at the end. Although not part of the standard wording, you may want to add a statement in the Advance Directives about honoring a person’s religious practices—calling a minister, rabbi, imam or priest, arranging for rituals that might bring comfort to your parent. The Directives are reviewed by health care staff regularly, and the staff will try to follow any reasonable request.

The Directives In Use
You must be an advocate for your parent’s wishes, whether you live close or far away.
• If your parent is admitted to a health care facility, request that the Advance Directives be filed on the top of your parent’s medical records chart. This will mean that every time a nurse or doctor looks at the chart, he will see your parent’s wishes first. When you visit the facility, check that your request has been fulfilled to your satisfaction.
• Make sure that the facility personnel understand your parent’s wishes. Speak personally with every member of your parent’s health care team.
• Every time a new doctor (usually a specialist) enters the treatment process for your parent, reiterate your parent’s wishes verbally and note that the Advance Directives are with the medical chart.
• Check your state's regulations or ask your parent's doctor. Some states require that the physician call the caregiver regularly to ask about Directives. In some states, this call must be made even at the time of intervention, such as before administering CPR.

In a crisis situation, the doctors and nurses may NOT refer to your parent’s chart for Advance Directives information. You might have heard of people being resuscitated even though they had written orders to the contrary. This is why it is important to mention those decisions regularly and keep those Directives at the front of the minds of the health care staff caring for your parent.

In my next post, I'll finish up with some special issues about the Directives and resources for further reading.

Blessings on your caregiving day!

Vacation

If you are enjoying this blog, you might enjoy seeing all of my Care Tips in one place. My latest book, Caring for a Distant Parent, includes advice from professionals, stories from caregivers, and tips from my experience to support you on your entire caregiving journey. You can order it directly from the Parentcare 101 website or send me an e-mail.

I'll be on vacation this week. Please check back on Tuesday, August 11, 2009 for the next installment on Parentcare 101. Have a good week!

Advance Medical Directives

“It’s a good thing your dad died quickly,” Alice told her son. “He wasn’t stuck on those machines like a vegetable. I don’t want that either. Pull the plug, you hear?”

This is not a sweet "Hallmark" moment, but it does let you know this woman's basic wish concerning life-sustaining measures. More effective--and carrying legal force--is a document called Advance Medical Directives (AMD). Along with the Durable Power of Attorney, the AMD is an important tool in information gathering and in caregiving.

What Are Advance Medical Directives?
Each person has the right to accept or refuse medical treatment. Advance Medical Directives, or simply Advance Directives, protect that right if a person ever becomes mentally or physically unable to communicate his wishes due to serious illness or injury.

The Advance Directives state clearly what life-sustaining measures a person wishes the doctors and nurses to take on his behalf. The Directives:
• Protect a person in extreme conditions such as brain damage, permanent coma or terminal illness when he is unable to communicate; and
• Limit life-prolonging measures when there is little or no chance of recovery.

In most states, law now requires that a statement of Advance Directives be on file for each resident or patient in a hospital or nursing home. Also, each state may use a different document, such as a living will, a medical/durable power of attorney or a general statement. Consult legal counsel in the state in which the Advance Directives will be used.

What Types of Decisions Might You, As Caregiver, Need To Make?
The woman’s off-handed comment above to “pull the plug” actually may mean making a number of decisions concerning:

• The use of Cardiopulmonary Resuscitation (CPR) to revive her;
• The use of a respirator (a machine to mechanically work her lungs) to keep her breathing;
• When and if to treat infections that, if untreated, would shorten her life;
• The use of feeding tubes to provide nutrition if she could not eat normally;
• Providing appropriate pain relief;
• When and if to use dialysis to clean her blood by machine if her kidneys no longer functioned; and
• Organ donation (specific organs or entire body).

For each of these situations, the health professionals will look to you, as caregiver and decision maker, as well as the AMD for guidance if your parent is unable to express her own wishes.

Perhaps, due to current circumstances, you feel that you won’t have to make these decisions for your parent, but life happens, circumstances change, and you may find yourself responsible for important emergency or end-of-life decisions. Prepare now.

Know What Each Procedure Involves
Each of the life-sustaining measures noted above has many variations and intensities of treatment. While making decisions and preparing the Advance Directives, if you are unfamiliar with a procedure or don't understand the language describing the procedure, consult a physician before completing the Directives.

Implications
According to a recent study, only 27 percent of adults have Advance Directives in place. This means that most people, when faced with end-of-life decisions, have no guidance, may be guessing about the patient's wishes and may decide based on their own preferences, not those of the patient. Take the guesswork out--for you and your parent--by having Advance Medical Directives in place. In other studies, stress levels for the family making end-of-life decisions were significantly reduced when Advance Directives were in place. The family could concentrate on the person's quality of life and be guided by her own wishes in the decision to stop life-sustaining treatments. Suffering is not needlessly prolonged. There is less agonizing over a decision; your parent has already told you, in writing, what to do.

This is one of the most powerful ways you can honor your parent. Honor her wishes on the manner in which she wants to live and die.

Do Not Hurry
Because numerous procedures and treatments are discussed in the AMD, be prepared to spend some time compiling this document. You or your parent may not be writing the document yourself (although you can), but deciding what options would be best under what circumstances may take some time. If you are helping your parent with decisions and information, the discussions may carry over several sessions. Do not hurry the process; these are some of the most important decisions your parent--and you--will ever make.

In my next regular post, I'll provide more tips and suggestions for the Advance Medical Directives. Until then, Blessings on your caregiving day!

Final Thoughts on the Durable POA

We've been discussing the durable Power of Attorney over the last several posts. Let's wrap up with a few final suggestions.

• Talk to your parent about a Durable POA now (or Living Will, Living Trust). Stress that this does not give you immediate control--but transfers control only when he gives you control, when he is incapacitated, or when trusted professionals give you control. Reassure him that you want the best care for him.
• If your parent avoids the issue, try asking the people on your contact list to help. Perhaps one of them can persuade your parent to take this important step.
• Tell your parent that you are arranging for your own Durable POA (and you should!) and would like to know what he wants, or to help him arrange his.
• Be involved in drafting the POA. Share the tips from this Blog with your parent.
• If your parent worries about putting too much control into one person's hands, suggest that two documents be prepared: a POA for financial affairs and a POA for medical affairs. You can be one agent; perhaps another sibling or relative can be the other. This separates the control and may make your parent feel more comfortable.
  
  Suggest that two agents be named if your parent feels that checks and balances are needed. Be careful of the wording. If the POA names you AND another, then BOTH people must sign documents or give verbal permission for procedures. This can unnecessarily delay care if either of you is unavailable. In my mother's document, my sister and I were named so that EITHER of us could act. We could work independently and quickly when a need arose, but were expected to consult each other.

Is the POA the Only Way To Become an Agent for Your Parent?.
There are other legal ways to become an agent for your parent.

• You can add your name to your parent’s bank accounts and safe deposit box.
• Your parent may have a Living Trust, which will cover the financial issues and help you avoid probate. Your parent may also have a Living Will, which will generally cover the health care issues. These are good arrangements to have, but can be complicated to set up. Your parents may balk at the involved process.
• You can apply for legal guardianship before your parent is mentally incompetent. This is a long and distressing court process which your attorney will probably advise you to avoid. However, once your parent has been declared mentally incapacitated (according to state regulations), gaining legal guardianship is a fairly straightforward process. You may want to wait until incapacity is certain.

The DURABLE POA, signed and recorded while your parent is still mentally alert, is a straightforward document and versatile. It lets you take over when the need is the greatest and goes into effect only when the attorney and the doctors--and your parent, if able--agree. If your parent's condition improves, the POA is no longer in force and your parent takes over his affairs again.

What If My Parent Won't Do This?
Your parent is an adult. The truth is that if your parent is over 21 and mentally alert, she has the right to arrange her affairs in any way she wishes no matter how inconvenient and stubborn it may seem to you. Do what you can, be gently persistent, look for another opportunity to bring the subject up. Use this Blog, the Parentcare 101 Website, and the books in the Parentcare 101 Booklist to prepare yourself in other ways. As I did, you may get the opportunity when the first crisis hits.

Resources to Read More
Haman, Edward A. The Power of Attorney Handbook. Clearwater, FL: Sphinx Publishing, 2006.

Schumacher, Vickie. Understanding Living Trusts: How You Can Avoid Probate, Save Taxes and Enjoy Peace of Mind. 5th ed. Schumacher Publishing, 2003.

**You can request these articles from your public library:
Hochberg, R. Mark. Underpowered? Anything less than full power of attorney could keep your agent from doing the right thing if you’re incapacitated. Financial World, v 164, n20, p78, 9/26/95.

Jamison, Judith J. Are your powers in place? Best’s Review--Life-Health Insurance Edition, v 98, n11, p90, March 1998.

What's In the Durable POA?

We've been talking about the durable Power of Attorney, one of the most important documents that you'll need as a caregiver.

Different laws exist in each state regulating such documents so your parent’s attorney (at least an attorney in the state in which your parent resides) can draft a basic document. From experience I learned that there are some things that must be included:

1. The POA should be DURABLE. This means that it goes into effect when your parent is considered incapacitated, and your role will last until your parent’s death or until he regains competency. "Competency" has a legal definition in each state and criteria for passing control to you. For my mother, her personal physician and her attorney had to verify that she could not take care of her affairs.

2. The POA should include specific financial items. Every POA includes standard language that describes the types of finances for which you will be responsible. In addition, whether you know your parent’s financial holdings or not, be sure that every type of asset or investment is covered.
• Add wording for investments such as stocks, bonds, REITS and mutual funds. Without wording that gives you access, most investment houses and brokerage firms will not permit you to work with your parent’s investment accounts.
• Also insure that you have access to the safe deposit box (especially if your name is not on the box with your parents). Additionally, find the box keys and have them available. There are two keys for each box.

3. The POA should cover Health Care. States are adopting standard language for this. What you want is the right to admit your parent to a hospital (no, it’s not automatic) and to make decisions on all care. In this document can be included a statement of Advance Medical Directives (we'll get to this in a future post) although most health care facilities will also want the Medical Directives in a separate document to attach to your parent’s chart.

Even with specific wording in place, be prepared to obtain a notarized attorney’s statement for some brokerage houses and investment firms. If your parent is receiving Social Security checks and you‘ll handle that money, you will need to apply with the Social Security Administration to be the “designated payee”. But the DURABLE POA will smooth the path with these organizations and clearly state your parent’s intent in the matter.

Some Important Tips

• Once you have the signed Durable POA, keep the original safe and make plenty of clean copies. You will need to file a copy of it with each organization when you are representing your parent.
• Find a Notary Public near to your work or home. You may need to send notarized copies of the POA. The Notary will also be used for other documents as you manage your parent's affairs.
• DO NOT give the original POA to any of the various organizations that will need a copy (such as banks, the hospital, etc.), even if they plead and threaten. Explain your limitations. Send a copy. A copy is acceptable if you are firm about it; suggest a notarized copy.
  
  I had only one original in my possession, signed with great emotion. In only one instance did I agree to hand over the original--to an investment firm who would not budge—but we agreed that I would send it registered mail with a return envelope to be mailed immediately back.

I'll finish next time with some final suggestions for the POA and talking with your parents about this important planning tool.

Until then, blessings on your caregiving day!

The DURABLE Power of Attorney (POA)

As soon as you have noticed that your parent may become disabled in the near future (see your Reality Checklist), your next priority should be a DURABLE Power of Attorney (POA). This legal document allows you to act as your parent’s agent in all matters. If your parent is anything like my Mom, when you approach the subject, you might get responses like:

(1) I’m perfectly capable of handling my own affairs, and I’d rather keep control.
(2) I don’t want to talk about it. How dare you even mention such a depressing subject!
(3) Oh, don’t worry. I have a will in place. I intend to die on my feet (at my job, in my sleep, etc.)

And that was the end of that discussion.

What Does This Document Do For You?
Every practical discussion of eldercare stresses the importance of having some document in place that will permit you to take over if your parent becomes incapacitated. I lend my voice to these authors. Why? Because it’s crucial.

The DURABLE POA, written properly, permits you to:
• Write checks
• Manage your parent’s household
• Admit your parent to a hospital
• Make decisions about his medical care
• Access the safe deposit box, and carry out a host of other daily household activities
• Rent or sell your parent’s house
• Manage financial investments.

In short, it permits you to make decisions that your parent would make himself if he were able.

My Experience
It was in the Spring that my sister and I recognized that our mother's mental condition was failing. We began to gather information and knew about Power of Attorney documents, but did not make the connection to our situation until the Fall and Mom's emergency admittance to the hospital. When I arrived at the hospital, I watched in distress as Mom tried to pack for a trip that we had taken long ago and directed me to find things in the hospital room chest of drawers that clearly would not be there. Her physician was certain that she had normal pressure hydrocephalus, a condition in which spinal fluid backs up into the brain causing damage, hallucinations and dementia. There were tests to perform and treatments he would try; there was a good chance she would recover her mental facility. But that might take as long as a year. For now, Mom needed help to make medical decisions, maintain the house and deal with her finances. I needed a POA.

I called my sister and Mom's attorney. By the next day, the attorney had a document prepared that we could use for both financial and medical decisions. Knowing my mother's efforts to be fair to both her children, the attorney suggested that my sister and I both be named as agents with an "either/or" wording. We could act independently but were expected to consult one another. Then he encouraged me to get it signed any way that I could.

I called the social worker at the hospital who said that Mom was actually lucid in the morning--between 10 and 11 was best. This morning improvement in thinking is common in dementia patients. The social worker agreed to be a witness for the document signing. I entered Mom's hospital room trembling with anxiety. If she really did not understand the document, then we would have to try other, more complicated options. If Mom got stubborn about something in the document and did not sign (as she had done in the past for other things), then we would not be able to help. Long, shaking minutes passed while Mom read the document and asked questions. I silently thanked God and everything divine that she understood what the document was and what its conditions were. Once assured that my sister and I held equal authority and that her attorney (a long-time friend) was in favor, she accepted the help of the social worker to hold her arthritic hand steady and signed her name.

If there is any way that you can avoid this kind of situation with your parent, believe me, you want to.

We'll talk about the POA over several posts, because it is one of the most important documents in caregiving. It will help your parent. Even more, it will help you.

Until next time, blessings on your caregiving!

Talk With an Eldercare Attorney

The physician examined Jeff’s father and diagnosed mild dementia. “I had plenty of medical questions,” Jeff said, “but I had legal ones, too. Like who is liable if Dad causes injury or damage through his actions? I’d like to sell the house, but Dad is resisting. Do I need legal guardianship? What are alternatives to this process? Dad doesn’t have a will. What does that mean in the long run?”

In your plan to gather information, an important source is an attorney who specializes in elderlaw or is familiar with the laws and regulations as they relate to seniors in the state in which your parent resides. Because state laws concerning eldercare, senior rights, facilities certification and property ownership differ significantly between states, it is vital to speak with a lawyer in the state of your parent’s residence, not yours. The attorney is one of your parent's care team but may become a source of advice for you in your role as caregiver.

In general, eldercare law is defined by the age of the clients served and by those professionals who specialize in laws and regulations concerning seniors. Your parent's current attorney may be able to fill this role if he is well versed in state regulations and law for this area.

Topics With Which an Eldercare Attorney Can Help
In addition to legal issues that concern younger people, advancing age brings with it new areas in which to learn, explore options and make decisions. An attorney familiar with elderlaw can advise in the following areas:
• Financial and Estate Planning
Estate planning includes the management of a person’s financial assets during the person's lifetime and planning how the estate will be divided upon the person's death through wills, trusts, asset transfers, tax planning, and other methods.
• Planning for Possible Incapacity
In this area, the senior chooses in advance how health care and financial decisions will be made if he is unable to do so. Legal document which might apply include durable powers of attorney, health-care powers of attorney, an Advance Medical Directives statement, living wills, and other means of delegating the decision making. The attorney may also be able to advise on conservatorship and guardianship proceedings in the event that your elder has not planned for incapacity. I'll touch on some of these in future posts.
• Long-term Care Planning
Long-term care issues such as quality of care, admissions contracts, prevention of spousal impoverishment, and resident's rights. It also includes life care or retirement community issues such as evaluating the proposed plan/contract.
• Retirement and Pension Plans
Counseling regarding Social Security and navigating the system (retirement, disability and survivors' benefits) and other public pensions (veterans, civil service) and benefits as well as private pension benefits.
• Insurance Coverage
Medicare, Medicaid, Medigap insurance, and long-term care insurance.
• Housing issues:
Home equity conversion and age discrimination. Buying and selling property.
• Age discrimination issues
The attorney may bring cases under the Age Discrimination in Employment Act.

The Costs, The Benefits
Consulting an attorney is not inexpensive, but one or two visits may be all that is needed to set you and your parent on the right track. When you think of the cost, also think of the costs to yourself if you don’t consult a professional:
• Consulting an attorney reduces your research time in legal matters. Your time is valuable.
• The attorney can act as a sounding board for your ideas and can determine the legality and legal consequences of what you'd like to do. This will help you avoid legal pitfalls that, in the long run, may cost much more money than the initial consultation.
• Speaking with an attorney about the concerns you have will often make you feel better, give you a feeling of having a little more control and being prepared. Peace of mind is a valuable commodity.

Finally, remember that this is a relatively new area of law and the attorney you choose may not be familiar with all the topics described above. Find out what her area of expertise is and if she is not qualified to give you complete answers, ask her to refer you to someone who can.

Blessings on your day!

LTC Insurance: Tips & Suggestions

Long-term care (LTC) insurance can be a good investment and is worth serious consideration. Over that last few posts, we've been discussing the financial and coverage issues surrounding the decision you make for your parent and for you. Today, let's take a look at some other, general, things to consider. I use "you" here to refer to you personally or your parent.

In addition to details about the payout benefits, check that the LTC policy you are reviewing covers the following:

• How will this policy interact with others, such as Medicare, Medicaid or retirement policies? You may need to use other policies first before this one can be used.
• "Take-it-with-you." If you are purchasing the policy through your employer, can you take the policy with you and is there an increase in premiums for doing so? Premiums do not always increase when you leave your company.
• Out-of-state or out-of-country coverage. If you travel a great deal or spend part of the year in a second residence, this coverage might be of interest.
• Suspension of premiums while receiving benefits. While you are receiving benefits from the policy, you should not be paying premiums. What documentation is needed to inform the insurance company of a change in status?
• Reserved LTC comunity bed during a hospital stay. During an assisted living residence or a nursing home stay, there may be times when you need to be admitted to the hospital for treatment. Make sure that the LTC policy reserves the bed in your residence community or nursing home until your return.
• For insurance premiums and benefits to be tax deductible, the policy needs to be "qualified" under the Health Insurance Portability and Accountability Act (HIPAA) of 1996.

As I've mentioned before, saving for long-term care should have as much priority in your financial planning as does saving for your child's education or for your retirement. Given its importance, here are a few final suggestions for planning.

• Consider an LTC policy when you or your parent is young. Age 40 is not too young, and you will be able to purchase a higher daily benefit for a much lower price. The high-end premiums quoted in the example above are for a policy purchased at age 50, but would be higher at an older age.
• Buy an LTC policy when you or your parent is healthy. A fairly clean medical exam permits you to buy a higher daily benefit at a lower rate. Even if you decide to increase the daily benefit later (and the premium), most companies leave the basic premium where it is and base the premium increase only on the increased part of the daily benefit.
• If you wait too long in terms of age or health, insurance companies will refuse to cover you or the rate will be prohibitive.
• Buy a policy even if it covers only half the cost. You and your family may be able to fund the rest of the cost from savings or investments.
• If you have an LTC policy in place, do not cancel it when you or your parent becomes eligible for Medicare/Medicaid. Each state has varying rules for qualifying for Medicare/Medicaid assistance, so have an eldercare attorney review the policy and then decide.
• Before purchasing a policy, get an opinion on its value from an objective source, one not interested in selling you insurance. An eldercare attorney, a financial planner or a knowledgable friend are all good choices. Some states also have an insurance counseling program from which you can request an objective opinion.

To Read More:
Abromovitz, Les. Long-Term Care Insurance Made Simple. Practice Management Information Corporation, November 1999.

Lipson, Ben. JK Lasser’s Choosing the Right Long-Term Care Insurance, Wiley, 2002.

Rowley, Stephen F. The Consumer’s Guide to Long-Term Care Insurance. 1st Books Library, 2004.

For easy purchase, go to the Amazon.com Parentcare 101 Bookstore.

Blessings on your caregiving day!

The LTC Policy by the Numbers

Buying long-term care insurance is not the only way to pay for the care and assistance you and others might need as you age. Another way is to have a savings and/or investment plan in which you put so much money away a month until you have saved enough money to cover several years of care.

Only about 8% of all elderly reside in a nursing home, so you may choose to play the odds and not plan for nursing home care. It's a gamble, but you may be willing to accept the risk if money is tight. But recent statistics show that from 60-75% of the US population will require extra care in the family home or will live in some type of assisted living community. Three out of four people. Those are odds I'm not willing to play.

Saving or planning for long-term care is as important as saving for college, for retirement, or for the big vacation. You use the same priniciples. You have a timeline; you can estimate how much you may need (see the post on Costs of Care); you can estimate how much you'll need to put away each month and how much interest the funds need to earn to meet the total cost. Long-term care insurance can augment or take the place of the savings plan.

So the question is: is an LTC policy really cost-effective? This is something that you will need to judge for your own and for your parent’s situation. Let's look at an example.

As we learned last time, LTC insurance can be used for both in-home care and nursing home care. But nursing home care is the larger burden, so we'll start with that. I'm talking to you or this is you, talking to your parent.

Let’s assume that you’ve purchased the insurance at age 50 and when you're 70, you develop a condition that requires nursing home care. You’ve been paying premiums for 20 years. You can expect to be in the nursing home 3 years (a number from the statistics experts).

Cost of insurance premiums
• High end, high coverage options = $250/mo X 12 mo/yr X 20 yrs = $60,000. Benefit = $120/day
Your Benefit from the policy
• 365 days X 3 yrs = 1095 days X $120/day = $131,400
Nursing home cost
• Average $176/day X 365 days/yr. = $64,240/yr X 3yrs = $192,720

You’ve paid $60,000 in premiums, but the benefit you will receive is $131,400. You’ve certainly gotten your money back in this scenario. The benefit does not cover all the cost of the nursing home, but without the policy, depending on your assets, you could be responsible for most of the $192,720.

You can do the same calculation for in-home care. Remember, the LTC insurance benefit for in-home care may be only a fraction of the $131,400 we calculated above.

Since costs vary widely, it pays to check out nursing home and assisted living costs in your (or your parent’s) area and shop around for insurance to find the best plan for you.

What about Medicare/Medicaid, you ask. You will need to factor the government insurance in, but here are the facts. What will Medicare/Medicaid pay for?
• For a retirement community which may provide meals and some transportation: Nothing.
• For help with activities of daily living (ADL), such as bathing, dressing, eating, medication: Nothing, except for some medication expenses. No professional training is needed to help with these activities, so these are not eligible under the government insurance plans.
• For medical care provided in the home: A large portion of the cost for a limited amount of time.
• For skilled nursing care: A large portion of the cost for a limited amount of time. Professional nursing training and skill are needed for the care.

Consider the LTC policy benefit as a pool of money on which you can draw if you need it. And statistics show that you will need money for long-term care. Consider LTC insurance as a savings plan much like your retirement plan.

Take some time to consider the financial options. Long-term care insurance may be just the thing to give you long-term peace of mind.

Blessings on your caregiving day!

Long Term Care (LTC) Insurance

We've been talking about finances and in my last post, I shared some cost estimates for providing care. It's a hefty price tag no matter how you look at it--you and your parent will pay this in money, emotional stress and/or personal effort, no doubt in all three. I'd like to share some options for the money side. One of the most important financial aids to consider is Long Term Care Insurance.

In the 1980's, the company for which I was working offered LTC policies to me as an employee, to my spouse and to my parents or in-laws at a reasonable group rate. I found out that any policy would remain in force at the same premiums if I left the company. I immediately signed up and arranged for a policy for my father-in-law. Three years ago, as Dad's health declined, the family made plans to care for him at home and later in an assisted living facility. Three years ago, that 25-year-old policy kicked in a chunk of change to help pay for Dad's expenses and supplemented his income to allow for him to live in comfort with good care. It was one of the best investment decisions my husband and I ever made.

Care Tip: Talk to your parent about purchasing a policy, certainly, but consider a policy for yourself, especially if you're over 50. The earlier you purchase, the lower the premiums will be and the lower the overall cost.

Let's talk about the basics of LTC coverage. I'm using "you" to mean you and/or your parent; I'm assuming you're considering your own policy.

What Might an LTC Policy Cover?
An LTC insurance policy is designed to cover a variety of care options that you may need if you are chronically ill or have become mentally incapacitated and need continuous care over an extended period of time. A basic policy will pay:
• A daily sum to cover the cost of a nursing home stay.
• A daily sum to cover the costs of supportive services provided in your home, such as 24-hour nursing care, a health aide, meal service, or housecleaning.
• A daily sum to cover the expenses of living in an assisted living community.

Activities of Daily Living (ADL)
Most LTC policies judge a person’s physical competence in terms of how many Activities of Daily Living the person can perform on his own. These activities include such things as bathing, dressing, preparing and eating a meal, and taking medication. Each policy will state what it considers to be “full function”. If a person cannot perform 3 or 4 of the ADLs described (depending on the policy), then the person may begin to claim benefits from the policy. Usually a doctor’s statement is needed to verify eligibility.

Make sure that the policy clearly states when and under what conditions benefits are triggered. Make sure that you understand how the policy is defining each ADL and share that information with your doctor who will be writing the report to send to the insurance company.

Some Benefits of an LTC Policy
When looking for a policy, pay attention to the following:
• The daily benefit for the nursing home. Most insurance companies will give you a choice of the benefit you want from as low as $60.00/day to $200.00/day. Each increased amount also increases the premium cost of the insurance. To choose a benefit level, visit or call several nursing homes in the local area to determine the average price. Even choosing the lowest benefit translates into money you or your parent will not have to pay from current income sources.
• The daily benefit for in-home care and what is covered. The in-home care is usually stated as a percentage of the nursing home benefit. Again check some local sources such as the Volunteer Nursing Association to estimate local costs for such services.
• The assisted living benefit. Some policies include a benefit if the person lives in an assisted-living facility as a result of a decrease in the number of ADLs the person can perform.
• The criteria for invoking the policy. In how many of the ADLs must the person be deficient and what documentation is necessary to gain benefits?
• When do benefits begin? Many policies specify that benefit payments begin 90 days after the patient has met the criteria (qualified) for benefits. Until that time, you are still responsible for paying the premiums.
• Increasing benefit provision. What provision is made to increase the daily benefit (from $60/day to $90/day, for instance)? Most policies allow you to increase with a medical affidavit and an increase in the premium, but some companies only allow changes to the policy once per year during an “open enrollment” period.
• Cost-of-Living increase. Costs are sure to rise and some policies provide an automatic adjustment of the daily benefit based on the current cost-of-living indexes. Some companies charge an extra premium for this adjustment.
• The lifetime limits for the policy. The higher the limit, the better, but higher limits mean higher premiums also.

So, the best LTC policy can provide benefits for home care, assisted living communities and nursing home care. In my next post, I'll share some other things that you need to consider when looking for a policy and a way to decide how cost-effective a policy might be for you and your family.

Until then, blessings on your caregiving day!

Estimating What Your Parent Can Afford

In my last post, I shared with you some average costs of eldercare, but the most important figure you need to know is what your parent and your family can afford on a monthly basis for caregiving. No matter whether your parent will remain in his home or move, the calculation is an easy one:

For home care, remember that home, food and clothing expenses must be paid in addition to the new expenses of caregiving.

(Parent’s Current Income) - (Parent's Current Expenses) = Funds Available for Care

In other words, the difference between your parent's income and his current expenses is what you have available for care. If you and other members of the family are willing to pitch in, that can be added to the "Income" side. If your parent can economize household or vehicle expenses, then that can be subtracted from the "Expense" side. Be as accurate as you can when making the calculations; this will help when you begin to research available services.

The "Income" side of the financial picture is probably stable at this stage of your parent's life. However, you have room to maneuver with the "Expenses".

Moving to a long-term care (LTC) community, for example, replaces many of the expenses your parent already has. To determine what's available for a new living situation, add up:

• Your parent's current income
• House payments or rent
• Utility expenses (electricity, gas, propane, sewer, water)
• Telephone
• Food
• Transportation (car insurance, gas)
• Property Taxes
• Cable fees
• Home Insurance
• Home maintenance (gas for the lawn mower or snow blower, light bulbs, carpet cleaning, for example)

Whatever your parent pays for these basics and all her income will now be shifted toward payment for a retirement or LTC community or for living with you. If there are any LTC insurance benefits available or financial help from the family, this allows for more options.

I was speaking with one caregiver at the Caregivers Conference last week who said that her mother resisted moving into a community because she was sure that it would cost her less to stay in her home. When her daughter did the math, she showed her mother that, in fact, moving to the community they'd chosen would cost exactly the same or a little less. And her mother would no longer have to do laundry, cook every meal, or clean. She could join in activities and would have time to explore some hobbies and visit friends. Her mother made plans to move that day.

Take the time to do the math. Keep the figures handy when you start deciding on care and housing options. Open up conversations with your parent about finances and try to work as a partner with your parent to find financial solutions that work for him and for the family. You'll be glad you did.

Blessings on your caregiving today!

How Much Will Your Parent's Care Cost?

Who pays for your parent's care? The short answer--your parent does and you do. Sometimes, insurance or the Government does.

So, one of the most important types of information you need to gather as a caregiver is financial--you need to know something of your parent's finances and your own. Let's start today with some basic cost figures so you can begin to estimate.

There are several ways that the financial aspects of your situation may play out.
Your Parent May Stay in His Own Home
This means that any care expenses are added to the day-to-day home maintenance, transportation, food and clothing costs your parent currently has.

In 2006, the average cost for a home-health aide was $20 per hour.

In the 2008 PBS television special, "Caring for Your Parents", one family reported that they spent $200,000 per year on 24-hr, comprehensive home care.

If your parent remains in her home, you, the caregiver, will also spend money from your own pocket to support her.

A recent study published by the National Alliance for Caregivers states that the average amount that caregivers who live nearby spend on home care for their parents is $8,496 per year. This includes food, transportation, and medical care and supplies.

When the caregiver lives at a distance (over an hour away), the costs will average close to $14,064 per year. As a long-distance caregiver, you must consider that your household may have to support an extra expense of up to $1172 per month in expenses to help care for your parent in her own home.

Your Parent May Move in With You
This means that you are adding another member of the family to your own expenses. Since your parent no longer needs his own home, monies previously spent on his house and its upkeep can now be dedicated to pay for his care. You will need to work out with your parent how the finances in the new, blended family will be handled. The care expenses are similar to those stated above, but you might be offering your own time and effort to offset some of the cost.

Your Parent Might Move to an LTC Community
Expenses for a long-term care facility, whether an assisted living facility or skilled nursing home, can run from $3,000 to $7,000 per month, depending on the quality of care, the level of care that your parent needs, and the region of the country in which you live. Costs for comparable care in Delaware, for example, are $1500 more than in North Carolina (based on personal research, December 2007). If your elder needs to move into an LTC facility, that’s $36,000 to $84,000 per year.

In 2005, the cost for a semi-private room in a nursing home was $176 per day. Annually, this adds up to $64,240. Fortunately, some of this cost will be covered by Medicare or Medicaid if your parent is eligible. Note that the average stay in a skilled nursing home is 2.4 years.

Whatever your situation, there will be money involved. In the next few posts, I'll look at how the financial end of care might be solved.

Finding Local Services

My day at the Triangle Caregivers Conference in Raleigh, NC, gave me some time to think about how caregivers might gather the information they need more quickly, especially when it comes to locating local services. As a caregiver, what might you be seeking?

• Medical Facilities and medical professionals for your parent's health.
• In-Home Services so that your parent can remain in her home longer.
• Home-related information so that your parent can keep his home in good repair.
• Housing options for the time when your parent can no longer live alone or wishes to lighten his responsibilities through a different living situation.
• Long-term Care Facilities, including assisted-living and nursing homes.
• Financial Counseling which might include discussions of reverse mortgages, budgeting, estate planning
• Legal Services for living wills, advance medical directives, powers of attorney
• Geriatric Care Management to assess your parent's needs so that you can arrange the best services.

You can see that there are many areas of concern. As a caregiver, you won't need to deal with them all at once, but over time, you will touch on each of these areas and need to explore possibilities and options.

What works best is to find those organizations and agencies where your parent lives that do a first information gathering for you. Gathering contact information about local resources is what these groups do for a living, so they are the experts. Once you've identified these "gatherers", you can return to them each time you have a decision to make. So who are these gatherers?

We've already talked about the value of a caregivers conference, especially where local service providers are exhibiting. Look for workshops, conferences, gatherings where the community comes together to present services.

Use an Eldercare Referral Service. Your employer may have access to one of these through your Employee Assistance Program. Many are fee-based groups that locate providers and services for you. Often the services and providers pay to be listed, so the cost to you is minimal. However, the best place to start is the US Government's Eldercare Locator. It's free and once you explain the type of serivce you're seeking, they can get you started.

Find the local Area Agency on Aging. The AAAs were created by Federal law in 1965 to provide support and services to older Americans. With the 2001 reauthorization of the Older American's Act came a new initiative, the National Family Caregiver Support Law. Area Agencies on Aging now have the responsibility to plan, provide and coordinate multifaceted systems of support services specifically designed to support caregivers. Contact them to see if they have a list of resources or can guide you in the right direction.

Hook up with the AARP and its local branches. The AARP website is full of information on caregiving and the local branches keep track of local services. Check the website or call the national office (1-800-424-3410) to find the local group.

Non-Profit Resource Gatherers. I've found that dedicated, local non-profit or government groups are often the most diligent and most helpful when it comes to guiding you to resources. In the North Carolina Triangle where I live, for example, a non-profit group named Resources for Seniors publishes a comprehensive directory of services in Wake County; in Orange County, two counties over, the county government provides a listing of resources in that county. Check the Senior Centers, call your public library, ask around as you arrange for other services, search the web. Local caregiving circles are fairly small and you'll be able to locate these gatherers fairly quickly.

So, find the information gatherers in your parent's community. Bookmark their websites, put them on speed dial:

• Local Caregiver Conferences
• Eldercare Referral Services, especially the Government's Eldercare Locator (1-800-677-1116, www.eldercare.gov)
• Local Area Agency on Aging, Caregivers Support
• AARP
• Local non-profit information gatherers

If you have any other suggestions of information "gatherers", let us know. Have a wonderful day!

I'm at the Caregivers Conference Today

Hello, Friends,
Just a reminder that I'm at the Triangle Caregivers Conference in Raleigh, NC today. I'll be back on Thursday to share what I've learned.

Blessings on your caregiving day!

Caregivers Conferences

I'm running late this week. I'm preparing to exhibit at the Triangle Caregivers Conference at the McKimmon Center in Raleigh, NC on Tuesday, June 23, 8:30 - 3:00, so this post will be short. If you're attending, stop by and say hello.

When I was caring for my mother several years ago, conferences such as this one did not exist. Now, they are more prevelant. The basic format is a one-day conference full of speakers, exhibits, lunch and time to talk with providers and other caregivers. Some conferences are sponsored by a group of local care organizations, as this one on Tuesday is; others are the product of an independent group. For example, I'll be exhibiting in Orlando, FL in November at Caring for Aging Parents: Tools for a Successful Journey. This conference is organized by Stewart Miller Institute for Excellence and its purpose is to match up caregivers with the resources they need. The Institute is organizing events throughout the South through 2010.

I have found it a bit difficult to locate these conferences. They are often advertised by word-of-mouth and sometimes through newspaper ads. That means that you do have to keep your eyes and ears open and ask the professionals that are helping with your parent's care.

Conferences are a great way to gather a lot of information in a short period of time. The day away allows you time to consider options and study resources. And someone else makes lunch and cleans up. It's a good deal.

On the Parentcare 101 website, I've placed a new link that I will be working on right after the Tuesday conference. I'll be searching for conferences in the US and websites that may track such conferences, especially ones that serve the caregivers of aging parents. If you hear of anything in your area, let me know and I'll add it to the list.

I will not be posting on Tuesday, the 23rd, but I'll let you know what I learned on Thursday. Talk with you then!

Details of Your Parent's House

Sometime during the process of your parent's aging, you may be faced with arranging the sale of your parent's house. Or you may be helping your parent in this stressful activity. Selling a house involves a lot of paperwork, a variety of activities, answering questions, and making decisions. Adult children often cite that one of the most draining aspects of preparing the house for sale can be filling out the "disclosure" form and highlighting the house's selling points, mostly because they were so unprepared.

The "disclosure" form is required by State law and in general requires the seller to reveal any known defects or damage to the property. Not too long ago, I was helping my sister-in-law set up the sale of my father-in-law's house in Florida which had been hit by the double hurricane whammy of Charlie and Ivan in 2004. The real estate agent was thorough in asking about all the damage incurred during the storms and if, when and how the damage had been repaired. Not having lived in the house ourselves nor been involved in any of the repairs, we had to dig deep in our memories of what our parents had talked about and rely on a folder of receipts that they had kept. Every question was a new, hard memory search. We both wished we had paid more attention.

The selling information is another long form that details every aspect of the house's items which will be included in the sale. How old are the appliances? When was the roof replaced? Was anything remodeled recently? What about the furnace and water heater? Included here is everything you, if you were the buyer, would want to know before plunking down your hard-earned cash. I've sold at least 4 houses over my lifetime and believe me, this kind of information is hard enough to remember when you're selling your own house, but when you have to do it for your parent...you can imagine the headache.

The solution is to begin to gather this kind of information as soon as you have any indication that you will be involved in selling your parent's home, even if that might be years in the future. Whenever your parent talks about something that has been repaired or replaced, note it in a notebook or computer file. Try to note the age of everything permanent in the house--roof, carpets, flooring, windows--and the year the home was originally built.

Other things to note:

• Swimming Pool -- when installed, is there regular maintenance, how old is the pump
• Homeowners Association (HOA) -- are there dues, how often, how much, what's included, where are the HOA documents
• School District -- what district, where would children attend school
• Room Sizes -- the real estate agent will take measurements, but if you're selling "by Owner", you'll need this information
• Bathrooms -- how many, how old are the fixtures
• Water/Sewer -- what water system (city, county, well), city sewers or septic system. last time the septic system was serviced
• Windows -- wood, fibreglass, double- or single pane, when installed
• Storage space -- large or small closets, basement or attic available
• Garage -- how large, any storage

Finally,
What makes the house special? The house's characteristics and its location both have special features. Ask your parent why, exactly, he likes this house. Take a look around with objective eyes. Hardwood floors, an extra office space, the view out the back, near to shopping and bus stops, plenty of storage, alarm system, sunlights, stained glass windows, nearby walking paths--all of these can be added to selling information to give the house the extra push it might need in the market.

Get a picture of your parent's house as real estate. Gather the details with business in mind as well as your memories. When it's time to complete the paperwork, the process will be easier and less stressful for everyone.

Blessings on your caregiving day!

Persuasion, Games and Resources

In the last post of this series on talking with your parent, I'd like to discuss some persuasive techniques, a common conversational "game" we all play and finish with some resources for further reading.

Persuasion
If you truly believe that a certain course of action is best for your parent (and would better balance your responsibilities), you may need to use gentle persuasion.

• Consider first what type of argument might best sway your parent, not necessarily what you see as the most important or the most critical issue. What factors does your parent consider when making decisions? Saving money, not being a burden, maintaining independence, making the healthiest choice, getting a bargain, being safe--on which of these does your parent place the highest value? That's the approach to take.
  For example, to persuade a parent not to drive, one family might need to prove that not having a car will save a lot of money; another family might need to stress that someone else might get hurt. Try several approaches over time to find one that will work.


• Most elders wish to maintain their independence. So if your parent is reluctant to talk with you about aging, stress that the longer she waits to make decisions, the fewer choices she will likely have. One fall, one illness, one disability will immediately limit options. Making plans now, however preliminary, with your help and support, will allow her to continue to make her own decisions and maintain her independence for a longer period of time.


• Do not dictate, unless his safety or the safety of others is an issue. Most people balk at orders. Think how you would feel if someone made a demand of you. Reform the demand into a request or suggestion.

The "Yes, but..." Communication Game
In his landmark book Games People Play (Random House, 1964), Eric Berne presents many communication games that we humans devise to get our way, deny reality or avoid honesty. He describes one of our favorite communication games: "Yes, but…". We share a problem that we face with a friend. The friend suggests a solution. We respond, "Yes, but…" and come back with a reason why we cannot do it. Your parent will do the same thing.
Here's how such a conversation might go:

You: You've told me the housework is hard for you. How about hiring a cleaning service?
Your parent: That's a thought. But I don't like strangers in the house. They'll rob you.
You: If you hire a reputable company with workers who are bonded, that shouldn't be a problem.
Your parent: Yes, perhaps that would be Okay, but they charge too much.
You: I might be able to help you with the cost. How about finding out how much it might be?
Your parent: Oh, that's sweet of you, but I really don't have time to call.

The game of "Yes, but..." is not about finding solutions. The purpose for your parent is:

• To reject all the solutions presented.
• To assure himself that since you could not offer a viable solution, he is superior in reasoning; he has won.
• To play until the final silence when you can think of no more options. This demonstrates that you are inadequate because you could not come up with a solution good enough. He has won.

The purpose for you in the game is:

• To feel helpful, a "good" child, as you propose solutions.
• To accept the familiar role of "child" to his "parent"; his all-knowing, to your less than adequate knowledge.

In the end, "Yes, but..." brings no solution to the issue at hand. There is no reason to play unless one of the purposes appeals to you. The way to stop the game is not to play.

To "They charge too much", answer, "Oh, that's too bad. I didn't realize that." And change the subject.

To "I don't like strangers in the house", answer, "I can understand that," and change the subject.

Call the game. Sometime during the dialogue, say lightly, "Well, it's clear that you really don't want any help cleaning the house. Is there something else that you need?"

Change the subject. Or talk about your own house cleaning techniques. "Yes, but..." takes you in circles and provides little progress toward your goal of gathering information and finding a solution.

Promises, Promises
Beware of making hasty promises. Saying “I promise you’ll never have to give up the house” shuts the door to alternatives that may be more suitable in the future. Keep the options open. Instead say, “I know how much you love this house and I’ll try to help you as much as I can, but I can’t promise that you will be able to stay here forever.”

Respect Your Parent
•Your purpose in asking about your parent’s needs is not to dictate or decree, but to find a solution that’s best for your parent. Respect his wishes. You cannot run his life, just as you cannot run the lives of your older children. Advise, support and stand ready to help.
•How do you treat your adult friends? Try to treat your parent as you would any other adult but with a extra dose of respect.
•Let him know you respect his opinion; be tolerant of some of his indecision in stress; give him the support to make his own decisions.

When the Decision Is Made
After all the discussion and persuasion, remember that your parent is an adult and if she is mentally capable and is not endangering herself or others, she has the right to her own decisions--and to living with the consequences. By talking with her, you have done what you needed to do. Accept her decision, even if it's not the one you would have chosen, and work to find your balance within that reality.

Resources for More Reading
The following books are available through the OBC Eldercare Bookstore.
Berne, Eric. Games People Play. Random House, 1964.

Edinberg, Mark. Talking with Your Aging Parents. Boston: Shambhala, 1988.

Shulman, Vernard H. and Raeann Berman. How to Survive Your Aging Parents…so you and they can enjoy life. 2nd Ed. see Chapter 10: “How To Talk About Difficult Subjects”. Surrey Books, 2001.

Taylor, Dan. The Parent Care Conversation: Six Strategies for Dealing with the Emotional and Financial Challenges of Aging Parents. Penquin, 2006.

On the Web:
The 40/70 Rule, Home Instead Senior Care, Omaha, NE. A guide, video and several articles that include conversations starters and how to continue the dialog. Excellent ideas.

Techniques for How You Speak

Communication Skills. A lot of training firms and consultants make a lot of money helping people build their communication skills. Communicating in business has its own quirks, and the business world has social rules that are fairly standard. A person can learn to recognize the rules and use them. Communicating with your parent comes with unwritten and unspoken rules that often shift, with baggage from the past and with unforeseen emotions. The conversational goals when considering parentcare are to learn not only the facts of the situation, but to become aware of fears, desires, and capabilities--your own as well as your parent's.

Therefore, how you speak is just as important as what you say. Try these techniques from the experts.

• "I" statements instead of "You" statements.
  Instead of saying “You’re getting really forgetful, Dad.”, try “Dad, I’m really worried about your safety. Would you consider cutting back on using the lawn mower?”
  “Mom, I know you’ve had a few minor accidents in the house. I’m afraid you’ll get seriously hurt. How can that be prevented?”
  In the "I" statement, express your concerns, your feelings. Encourage your parent to suggest solutions and make his own decision. Instead of accusation or criticism, make a simple request.


• Beware of “should”, or “must”. Think of how you feel when someone uses these words with you. Saying “You really should...” or “You must…” will only increase resistance.


• Use an encouraging tone of voice. Always moderate the tone of your voice. Keep the tone interested, not belligerent or demanding. Don’t ask simply “Why?”, which might be taken as an accusation. Ask instead,“What makes you think that?" or "How did you come to that conclusion?”


• Ask open-ended questions. An open-ended question encourages more than a "yes" or "no" answer. Unless you want to play "20 Questions" with your parent, you want to encourage her to share with openings like: “How would you do that?” “What do you think?” “Tell me more.” "Give me some of your ideas." These are all good ways to get your parent to talk.


• Active Listening. Once your parent is talking, really listen to understand him, not necessarily to respond. Too often we're so intent on trying to figure out how to respond, we forget to ask a follow-up question that might shed light on issues we didn't know existed. Listen actively.


• Offer referral advice. If straight advice from you results in resistance from your parent, switch gears and offer suggestions on where to find more information, what questions to ask, or whom to ask.


• Stick to the facts of the matter at hand. If you're talking about your parent remembering his medicine, don't bring up the issue of driving. Focus on one thing at a time. Don’t bring up emotional baggage from years ago, don’t add extra drama to the conversation. There's enough emotion floating around.


• Calm Repetition. As we've said before, conversation is a way to manage your parent's expectations, to set your boundaries. Sometimes, in the face of complaints, pleas or demands from your parent, your best technique is calm repetition.
  
  Example
  It's Monday and you're visiting your mother. She is insisting that you visit tomorrow. You've questioned her, and there's no pressing reason for you to visit. You'll be back on Thursday. So you state calmly, "Mom, I won't be able to come tomorrow, but I'll be back on Thursday."
  "Surely you're not too busy to drop in for a few minutes after work," she says.
  Repeat again calmly, "Mom, I won't be able to come tomorrow, but I'll be back on Thursday." Do not change the words; do not add any emotion behind it. State the fact.
  It usually does not take long for your parent to receive your message. Repeat this cycle as many times as you wish. But when you are ready to leave, give her your usual farewell greeting and leave. And come back on Thursday.
  
  In this situation, you may sense loneliness on your mother's part, and you may want to arrange for someone else to visit. But once you've made your decision on what your plans are, calm repetition will help you communicate your decision to your parent.

What other techiques have you learned for talking with your parent--or your siblings, or your husband--that helps communication?

Conversation Starters

We're talking about talking. How you might gather information about your parent and her wishes directly from her. So how do you get started?

First, you might ask, "Why do I have to start anything at all? Why can't I just wait for my parent to bring the whole subject up?"

Answer: You're very fortunate if your parent does bring up the topic of his aging and his ability to live independently, because then you know that he is thinking about it and his interest makes conversation easier. You want to start the conversation because you're reading this blog. You're actively considering future possibilities, but you don't have a clue about your parent's thoughts or plans. You've noticed that your parent's status has changed in some way, and you want to learn more. You’re starting the conversation because your first priority is you, and you’d like to get a head start on planning and organizing for future needs. You know that caring at any distance is tough and you want to be more prepared, more effective.

Start Early
If you can, start talking while your parent is younger and healthy. What is his current lifestyle? What are his wishes for lifestyle as he grows older and perhaps faces physical limitations? Once your parent becomes ill, what was a difficult subject may graduate to an impossible one. Start the discussions as soon as you can.

In my family topics of illness and dying were openly discussed. Although we never sat down with specific questions, my mother made it clear through casual conversation what her desires were. When my sister and I faced decisions about my mother's care, we had a firm grasp on what she would want. Those years of casual discussion made later action easier.

Your Parent's Perspective
Before beginning the conversation, take some time to consider your parent's point of view. What do you know about how she feels? As she ages, what do you think is most important to her? Consider the following:

• Remember that control and independence--both financial and emotional--are paramount to all of us and certainly to your parent. If she is capable of her own decisionmaking, advise and guide, but let her make her own decisions.
• In our society, asking for help signifies a loss of control. Be aware that your parent may be reluctant to ask for help or even for advice because of this perception. You need to be savvy and use tact to draw her out. Assure her that she still calls the shots.
• Try to put yourself in your parent’s shoes. How would you feel if you could no longer drive, no longer walk, no longer remember the simplest things? How does the collapse of her world sit with you? In your own emotions, you may find the empathy to lovingly guide her to a decision.

Conversation Starters
Bringing difficult topics into the open can be tough and a bit frightening. Try to make a natural shift to an aging topic.

• Talk while helping with a simple task--washing dishes, folding laundry, replacing lightbulbs, caring for a pet or playing a game.
• Looking through old pictures with your parent can spark conversation and provide opportunities to communicate in a non-threatening way. Asking questions about other relatives can give you insight into how your parent feels about growing older.
• Seize the moment. Listen for opportunities to ask How? What? Do you ever think about it? This means actively listening and digesting what your parent is saying and then finding a natural opening to ask your questions.
• Clip a news or magazine article about the issue you’d like to discuss and share it with your parent. Then mention the article in conversation. “What did you think of that article?” may open up the path to good communication.
• Pretend you're seeking advice for yourself (which is not a bad idea!). Ask for your elder's opinion. It may encourage him to start thinking and talking.
• If both you and your parent have joined AARP (another good idea), use the information in that organization's magazines and bulletins to open discussions or to share your feelings about your parent’s aging.
• To talk about death, try approaching it the way you’d talk about a trip. “Mom, is there anything you’d like me to know or take care of before you’re gone?” asked in an interested and light tone may get the results you need to prepare for her passing.

Can you think of other ways in which you might start a conversation with your parent? What have you tried that worked pretty well? Share with us.

Managing Expectations

We've been discussing gathering information about your parent's circumstances so that you can plan your caregiving. Before we move to other areas of information that may need your attention, let's explore the unsettling activity of talking directly to your parent. After all, your parent knows the details of his situation better than anyone and if he is mentally alert, you should be able to glean important facts that will make a substantial difference in the care you arrange.

A recent AARP report shows that about two-thirds of Boomer women (69%) have had conversations with their parents about their ability to live inependently as they get older. But over 30% have not. An earlier AARP study on parent-adult child communications about aging states that the two most common reasons that adult children and their parents do not talk about living independently is because there is “no need” or because of “poor communications”.

If your parent doesn't live with you or you have an unsettled relationship with your parent, you may well fall into that 30%. And you likely have one of those two top reasons for not discussing care issues. Even if you've talked with your parent before, remember that "Nothing Is Set In Stone." Circumstances will change and you will need to speak with your parent again.

The “no need” reason simply does not apply. Your parent wants to stay independent as she ages—it would be easier on you, the caregiver, if she does—but without discussing the issues and concerns, she may not discover all the options that exist to maintain her independence. And without some conversation, you will have a poor idea of what your elder needs for independent living.

Communication is essential. Good communication is vital. If one of your reasons for avoiding discussion is that you have “poor communication”, now is the time to work on your communication skills and to build some bridges.

Even without heavy emotional baggage where our parents are concerned, we adult children know that our communication with our parents can be strained, especially when talking about something as stressful as quality living, illness, and death. During our next several times together, I'll be sharing some tips on talking with your parent, and I hope that you will share any techniques that have helped you break the ice about stressful topics.

Today, let me suggest that most communication with your parent is an attempt to Manage Expectations.

I write this with capital letters because it's a common business buzz phrase. To Manage Expectations is to clarify to another person what you can and can not do, what you will and will not do in a certain situation. Often, while clarifying, you must become an educator, explaining any limitations that you're under and teaching the other person selected details of your position so that they understand the boundaries you must set. Managing expectations means, most importantly, communicating your boundaries, your view, your own expectations.

Do Not Assume.

Do not assume that your parent knows how you feel, what you're prepared to do, or how you plan to arrange for care. Do not assume that you know what your parent expects from you. Unless you or your parent has obtained a divine gift for mindreading, neither of you can know each other's expectations until you get more information--from conversations, from behavior, from other observers. Your father expects that you'll visit him every day. You don't know this. Your job and family commitments make twice a week the most you can promise. He pouts. You wonder why and feel guilty. Your mother expects that you will drop everything at her phone call and come right over no matter the urgency of her concern. For you, dropping everything every time she calls will jeopardize your income. You know you need to clarify why you don't come and must find out what she really needs--perhaps more company, not necessarily yours.

Set boundaries, communicate those boundaries, stick to your decision until something changes. That's Managing Expectations.

Next time I'll share tips from other caregivers on how to manage those expectations.

Blessings on your caregiving!

The AARP Reports
Skufca, Laura. Are Americans Talking with Their Parents About Independent Living: A 2007 Study Among Boomer Women. Research Report. AARP, November 2007.

Barrett, Linda L. Can We Talk? Families Discuss Older Parents’ Ability to Live Independently…Or Do They? Research Report. AARP, April 2001

Where Are the Records?

“My grandmother kept her savings money interleaved between lingerie in a drawer. After a few hours, we found enough to pay for a meal service. I’m glad I remembered her mentioning that.”

“My mother is very organized. She showed us a file drawer in the den in which she had files for every investment, insurance policy and bank account. After she was hospitalized, my brothers and I found other things around the house, but we knew basically where everything was.”

“My dad has everything on the computer. Checking account, insurance records, he’s a real technology buff.”

We've been talking this week about gathering information on your parent's status and some tips for recording and storing that information. Part of what you need to know is where your parent keeps the household, financial and medical records.

Money. Insurance. Bank Accounts. Title for the House. Title for the Car. Investments. All important topics for a caregiver who may need to manage the finances as well as provide care for an aging parent. Touchy subjects. Emotional subjects. We live in a society where financial information is not readily shared. Your current salary is not going to come up around the office coffee pot or the holiday dinner table. And if you live miles away, time constraints and the desire just to “catch up” may push this topic to the back of the conversational closet. When preparing to care for your parent, social reticence and personal unease about finances put you at a disadvantage.

If you think that you might be your parent's caregiver in the near future, at the very least, KNOW WHERE THE RECORDS ARE KEPT.

Is the bank book in the old desk in Dad’s office? Does your mother keep a file cabinet in the basement for the insurance policies? Are all the credit card bills in a shoebox under the bathroom sink? Does your father keep stock certificates in folders under the mattress? Doesn’t matter. Even if you don’t know the details of your parent’s financial situation, you’ll be better able to care for your parent if you know where to look for important information.

What To Look For First
• Health insurance cards and plan descriptions
• Other insurance information: life, travel, accident
• Descriptions of current Medicare/Medicaid regulations and coverage
• Bank books, checking/savings/credit union account records
• Certificates of Deposit (CD’s)
• Social Security benefits papers
• Taxes
• Liabilities: the mortgage, credit cards, car payments
• Retirement benefits papers from employment (there may be two or three sets of records if your parent moved from one company to another)
• Investment accounts, stocks, bonds, property
• Safe Deposit Box keys and location of the box
• Locations of jewelry, heirlooms, boats and furniture
• The Will or Living Trust, Power of Attorney, Advance Medical Directives

Suggestions
• If your parent won’t tell you exactly where she keeps things, keep your eyes open while you visit. Her actions may give you some clue as to where to look.
• If your parent is reluctant to talk about finances, reassure her it’s for her welfare that you ask, not because you want to steal from her. You can’t blame your parent for being cautious. You’ve probably heard of children walking off with their parents’ assets. Planning care should be a partnership with your parent. Try to make it one.
• If your parent will not share with you, find out if she has shared any information with one of her friends, your siblings, a lawyer, a neighbor or her accountant. Perhaps she's entrusted someone else. Don’t fume about her lack of trust in you; be relieved that there will be someone you can ask if the need arises. Add that person to the Contact List.
• If your parent will not share with you and has not shared with anyone else, do a little reconnaissance on your own when you visit. Take a quick peek in:

• Kitchen and bathroom cabinets
  
• Any office area or desk
  
• All closets; flip through clothes in drawers
  
• Any storage area: attic, basement, shed, garage

Your purpose is to locate the records, not remove them. If your parent becomes incapacitated later, then you'll be better prepared to find the necessary paperwork.

If your parent can give you a "records tour", all the better. If not, be prepared to play detective. You'll be doing your parent--and yourself--a huge favor if you know where the records are.

Blessings on your caregiving today!

Your Parent's Contact List

Caregiving often means that you must rely on people who live closer to your parent to support him and to let you know how he’s doing. Neighbors, family, friends, professionals, ministers, work colleagues--all of these people may have a role in your parent's life and can help you check on his status and be a useful source of information as you walk the caregiving journey.

If all your family members live out-of-town or if you are an only child, the list of contacts becomes a vital source of support and help that will permit you to make informed decisions about your parent's care and to mobilize help when you cannot be there physically. Creating a care team (which we'll talk about in a later post), of which some of these contacts may be a large part, is good caregiving.

People who should be in your parent's Contact List:
• Family attorney
• Minister where your parent attends church, or spiritual partner
• Family accountant and/or financial planner
• Family physician
• Neighbors
• Your parent’s supervisor, if he still works outside the home
• Friends
• Family
• Landlord or Apartment Manager, if he rents
. Local Police

A note about the police. Find out how the local police handle situations when phone calls to homes go unanswered. If your parent doesn't answer the phone when you expect her to, can the police intervene and how will they?

If your parent does fall ill and you assume a more active caregiver role, this list may expand to include:
• All physicians treating or consulting on your parent's case
• Contacts in their living facility
• Local organizations providing services to your parent
• ElderCare Referral Agencies
• The Eldercare Locator service
• Real estate agent
• Social workers
• Hospital nurses
• Geriatric Case Manager
• Funeral Home Director

Look for a Holiday Card List or Address Book
If your parent has an address book or a holiday card list, now is a good time to find out where he keeps it and perhaps look it over for other ideas of contacts. If your parent becomes too ill to keep in touch with his friends, you can write a letter to the people in the card list or address book to let them know the situation and encourage them to write or call.

When thinking of whom to add to your list, consider...
Whom does my parent trust and turn to in times of trouble?
Who has a key to my parent's house?
Who looks in on my parent regularly?
Whom does my parent consider a confidant and friend?
Who helps with my parent’s finances and legal questions?

Important Tips
•Collect these names while your parent is still well. Meet as many as you can. Establish your own relationship with them. Discover from whom you might be able to ask for help. With this information, you'll feel more comfortable asking if a crisis occurs.
•Keep the list of contacts where you can easily find it. Either a section of your daily planner or a separate notebook works fine.
•The list must be portable; as part of your parent’s care team, you must be able to carry it with you.
•If you are using a palm pilot, cell phone and/or e-mail, be sure to have a back-up list electronically or in paper. I have heard horror stories of caregivers scrambling because their cell phone was damaged or stolen and all their contact numbers were lost.
•Don’t forget to note mailing addresses, cellular, work and home phone numbers and e-mail addresses for all contacts when they are available.

Your parent's contact list works alongside your parent's Care Log. Having this list goes a long way to reminding you that you are not alone. There are other people in your parent's life who care and will be able to help. Having this list provides you with more resources to call upon for support and information so that you can care more effectively.

Blessings on your caregiving day!

Keep a Care Log

We're talking about gathering information about your parent's status and as you learn more, you'll need to record what you've discovered. A place to begin is a Care Log.

The Care Log is simply a day-by-day record of the care your parent is receiving. Each entry marks an event in care: a discussion with a physician, medications prescribed, medical terms, an accident, diagnoses, decisions made, options offered. Start the Log as soon as you become concerned about your parent's health. Record what you know at the time and any questions you need to ask. My own notes were hurried and telegraphic as I listened and spoke with people on Mom's care team, but I later filled in the blanks as I learned more. This log was helpful in several ways:

•As my mother's illness progressed and she moved from hospital to rehabilitation to nursing care, healthcare personnel changed with those moves. I found that new physicians rarely studied her chart in detail before speaking with me. They asked me (I was astounded!) when certain procedures had taken place, what medications she was taking, what was the last medical approach. Only after this interview, would they consult the chart for details.
•Each new facility needed dates and physicians' names. Without the log, I would have been lost. With the log, I could easily find pertinent dates, relate details of discussions and maintain continuity in what care was being provided.
•The log was the main tool I used for sharing my mother's status and details of care with other members of the care team, with family, and with friends.

IMPORTANT: If you become the primary caregiver, this log must be portable--part of your daily planner, PalmPilot or a separeate notebook. If it's electronic, have a backup! My Mom's Care Log was a plain steno notebook. I filled one and part of another over my 5 years of caregiving.

When recording conversations with health professionals, take time to do the following:
· Note the date, time, the person with whom you're speaking, their position, the correct spelling of their name, with which institution they are affiliated (hospital, nursing home, rehabilitation center, etc.)
. Tell the speaker that you are taking notes and may need him or her to repeat things for you
· Ask the speaker to spell and explain any term with which you are unfamiliar
· Even if the speaker uses understandable English when describing your parent’s condition, ask for the medical term for the diagnosis or condition. If you wish to research the subject later, you will need these terms.
· Immediately after the conversation ends, read over your notes and fill in any details, expand on your shorthand, add your impressions. Anything that will clarify the situation and jog your memory in the future. You may be consulting this log months later.
· Make notes to get more information if you need it
. Add any new person to your Contact List (we'll talk about this resource in a later post)

Here's a sample of notes I recorded when my mother first entered the hospital.

10/28 8:30am
Dr. S T E V E N S, Jackson [Hospital]
Cat Scan--
Stroke? She's incoherent (didn't know what day it was)
Doesn't know, memory lost from yesterday
Dehydrated
Blood Sugar Low, BUN low (Liver function)
CNS: [Central Nervous System] Lumbar Puncture for neural infection
Large lump on left breast, mammogram to be taken
Neurology needed
Thursday we will know more

10/31
No heart attack!
Kidney function back to normal
Monday, biopsy on breast lump
No stroke: encephaletic pressure in the head; blocked ventricles?!
MRI for blockage
No neurologist [here]--U Pitt [she will need to be sent to Pittsburgh]
Breast Surgeon: S I R I P O N G
Spinal tap
Bone scan for cancer
Chest/ Upper, Lower GI

Remember that caregiving can last for months or years. But my caregiving experience taught me that whenever I now head for the hospital, doctor's office, clinic, I take a notebook with me, ready to write down what I learn. It's a good practice for your parent; it's a good practice for you.

Blessings on your caregiving today!

The Reality Checklist

This week, we're beginning a series of posts on gathering information to plan and prepare for parentcare. The first area of information that we identified last week was evaluating your parent's physical--and I'll add here--mental and spiritual status.

You may want to gather information when you first notice something has changed. Your normally even-tempered father's been irritable on the phone. He repeats things, complains. You've noticed at your Mom's house that the house is unusually disorganized--dishes in the sink, wash undone, a layer of dust on tabletops. Your parent’s behavior and temperament have shifted slightly, like a blurry photograph. Your instincts kick in. Something’s just not right. It may be the first time you realize that your parent is aging. And with a hand squeezing your stomach, you also realize that you are miles away. Part of that tension in your stomach may be the certainty that you will have to face caregiving when you and your parent are not on the best of terms. A lot of the worry comes from realizing that you don't know enough about your parent's day-to-day living.

Even if you are well along in your caregiving journey, you will need to establish an objective base line against which you can compare your parent's progress or decline. Then you can easily recheck every few weeks or months to see if anything in your parent's care routine needs to change. Remember that nothing is set in stone. Regular status checks help you to keep your information up-to-date, so you can arrange for proper care at the proper time.

You need The Reality Checklist. The Checklist contains a simple set of questions that cover the five major areas of a person's well-being: physical, mental, emotional, spiritual, and social. It helps you to gather facts as well as impressions. If you are to help your parent, you must be able to identify and communicate in concrete terms what has changed, what your parent can no longer do, physical symptoms, and what's not working in your parent's care.

· Don’t wait for a crisis, a fall, an illness, an accident. Honor your instincts. If you think your parent’s circumstances are changing, they probably are.
· Gather specific information about your parent. You may feel your father is depressed, but what behavior leads you to this conclusion? Has he lost touch with friends, cannot leave the house? Be as specific as you can.
. Constructing a picture now of your parent’s life will help you when you begin to look for ways to care for him.

Use The Checklist, then go on to...

. Confirm your own observations and impressions with others. Check with your siblings, other family members, neighbors, friends with whom your parent is close.
· After putting as many facts together as you can, talk with your parent. Ask him questions about how he’s getting along, what difficulties he may be having.
. Begin to ask “what if?” What if my parent will not be able to drive soon? What if she’ll need a housecleaner to help with the house? With each question, begin to think about the kind of services that might be needed.
. Consult the resources offered on the Parentcare 101 website to help you understand your parent's status and to make decisions.

With the Checklist in hand, you have a way to evaluate how your parent's doing. You have books, organizations and websites to consult for more information. You have health professionals, friends and relatives who can support you. You're doing great!

Blessings on your caregiving.

Information Is Good Care

During the next few weeks, we're going to discuss gathering the information that will help you during your caregiving journey. I've heard the saying "Information is Power", but in caregiving, "Information is Good Care". Having the right information at the right time is important in any aspect of life, but in caregiving that information becomes your bedrock. And you have an advantage. I know--and I'm sharing with you--the types of information you're going to need in advance. Even if you're at the beginning of the caregiving journey, you already have some idea of what you'll need. As a caregiver to your parent, at some point, you will need to know and be able to communicate:

• Your parent's physical status--health, abilities, mental acuity
• Where your parent's household, medical and financial records are filed or stored
• Who will be helping with your parent's care--family, friends, professionals
• Information about your parent's house
• Personal financial resources available for care--your parent's, yours, your family's
• Housing options for your parent
• Legal issues that will guide you handling your parent's affairs
• Insurance issues surrounding your parent's care
• Your parent's spiritual needs
• Your parent's wishes about their care, end-of-life decisions, living arrangements

In the long run, especially if your parent does not live with you, caregiving may be less about personal, physical, active care tasks but more often a series of information gathering expeditions and communicating decisions, managing resources, taking copious notes, and organizing others to provide actual care.

When you accept the job of caring for a parent, you do just that. You accept another job--at least part-time, and full-time if your parent has substantial needs and lives with you.

A lot of papers, e-mails, telephone calls, texts, websites, books, articles, information will be coming your way. Start thinking about how you might organize it so you can refer to it later.

Start now by thinking about the list of types of information listed above that you'll probably need for your parent. In each of those areas, what information about your parent do you already know? How much detail do you have? Do you need more?

What don't you know? In what areas do you feel a need for some serious information gathering? Can you suggest to the rest of us any areas that are particularly pressing?

Write a comment, send me an e-mail.

In the next few weeks, we'll start working through these areas and talk about what you're looking for and how to find it.