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