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.