Article Posted: 05/07/2008
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AgingPro Caregiving 101
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When the challenge appears
So, what do you do? 
The Realities of Caregiving
What is Caregiving?
The Dollars & Cents of Caregiving
8 Steps to Caregiving Success
Step 1: To Be or Not to Be a Caregiver
Step 2: Accepting the Role of Caregiver: Tools for Success
Step 3: Assessing the Situation
Areas of Assessment
Step 4: Organizing Information and Resources
Step 5: Developing a Care Plan & Taking Action
Once Long Term Care is required
How to find help locating long-term care services
Alternative Living Arrangements
Step 6: Paying for Care: Straight Answers to Financial Questions
Step 7: Avoiding Caregiver Burnout
Step 8: Preparing for the Ultimate
Additional Resources


AgingPro Caregiving 101
Tools For Success
 
 
When the challenge appears
 

The inevitable has happened. Maybe you saw it coming or maybe it came out of nowhere. You realize it is now necessary to factor into your busy life the time to lend support to a parent or aging loved one.

 

This new need may be the result of an illness or injury or maybe advanced years have finally caught up. Whatever the circumstance, an aging loved one is no longer capable of fully taking care of herself or himself alone. You’re thrust into a new world of responsibility in addition to your traditional role as son, daughter, grandchild or friend.

 

The scenarios are varied, but common questions arise:

• What do we need to know?
• What are our options?

• How can we manage these challenges in addition to handling our own busy lives?

• How can we afford this?

• How can we make the best decisions now so that we will have peace in our heart later that we did the right thing? 

 

These are the bottom-line considerations facing a rapidly increasing number of people desperately looking for reliable caregiving information and resources to assist them in sorting out what they can do to make things easier—on their loved one, their family members, and on themselves.

 

If you are in that situation, or you are looking ahead so you will know what your options are when the situation presents itself, welcome. You have come to the right place.

 

So, what do you do? 

 

AgingPro is dedicated to providing caregivers, and even care professionals, with whatever they need to be more successful in extending care and comfort to those who are aging.

 

Both common sense and a number of studies have shown that caregivers cope better when they receive appropriate assistance, whether through in-home skills training, counseling sessions, support groups, or help juggling care responsibilities. AgingPro Caregiving 101 is designed to assist you in understanding what Caregiving is, what it requires and how you, as a caring loved one but not a care giving professional, can be more confident and effective. And if you are a caregiving professional, this can assist you in filling in some blanks and being more effective.

 

Our company, AgingPro, brings the countless senior services into one central location so everyone can easily find them and loved ones can be more comfortable with their new responsibilities. We are a focal point of resources and a source of information and inspiration to assist you every step of the way in your journey with your aging loved one. We provide what you need that may be vital to your loved one’s care and your confidence, peace of mind and emotional wellbeing.

 

So, what do you do? Read on with confidence, knowing that your questions will almost certainly be answered here. If they are not, you will gain knowledge of resources where you can get the answers you need.

 

**If you are in need of problem solving NOW you might want to search AgingPro’s “Need Professional Care in Your Area Now?” box,  skip down to step 5 of this document, or go AgingPro’s Resource Link List .

 

Also, if your loved on is in the hospital, read Managing a Hospital Stay for helpful tips on being the best advocate for them.

 

The Realities of Caregiving

 
What is Caregiving?
 

Nobody applies for this job. Most try to deny the possibility they might be called upon to help, or that their loved one would be anything less than independent. Yet sooner or later something occurs and it’s looming in front of you.

 

The term “caregiver” refers to anyone who provides assistance to someone else who needs help. Specifically, we are generally referring to “informal” caregivers – those unpaid individuals providing assistance to someone who is chronically ill or disabled and who can no longer care effectively for himself or herself. This form of care delays or even helps avoid institutional placement or the need for more "formal," or paid, caregiving services. Caregivers can be spouses, partners, adult children, relatives or friends. Together, they provide services valued at more than $257 billion a year. Family, or informal caregiving is the backbone of the long-term care system in the United States. 

 

Caregiving is not easy. Make no mistake about it: caregiving can become a full time job that requires specialized knowledge and critical skills. Fortunately many of these can be either learned by non-professionals or gained by engaging experienced skilled professionals in the field.

 

Caregivers may be called on to help with things such as:

• Grocery shopping

• Paying bills

• House cleaning

• Providing or arranging for transportation

• Attending doctors visits

• Giving medication

• Cooking

• Feeding

• Bathing

• Dressing

 

There are many warning signs that will let you know it may be time to offer assistance to your aging loved one:

• Unopened mail or unpaid bills piling up
Plants not watered
Trash not taken out
Clutter around the house more than usual

• Clothes are dirty

• Personal hygiene has declined

Lack of interest in previously enjoyable activities
Declining memory

• Difficulty walking or increasing incidence of falling

• Decreased judgment

• Isolation
 

If you identify any of these with your loved one(s) —or any of the other flags from the full list of warning signs—it is time to consider what type of assistance they may need.

 
The Dollars & Cents of Caregiving
 

More than 50 million non-professional (“family” or “informal”) caregivers provide care for persons over 65 in the U.S. (U.S. HHS, 2000). Almost 9 million people provide care to persons over 50 with dementia. Half of caregivers are seniors themselves, aged 65 and older.

 

Half of all informal caregivers are spending 10% of their income on out-of-pocket expenses to care for aging loved ones. On average, this is about $5,500 annually, according to a recent survey (Evercare/National Alliance for Caregiving, 2007).

 

Most commonly, caregiver’s expenses were for household goods and food (42 percent of respondents), transportation (39 percent), medical co-payments and pharmaceuticals (31 percent), clothing (21 percent), and home repair and maintenance (13 percent). For the caregiver this often means skipping vacations or home improvements, taking out loans, neglecting their own health care, or not saving for their own future needs. According to a 2007 Caring Today study, 53% of respondents experienced financial hardships due to caregiving.

 

This is not meant to discourage you. It is offered here to assist you in preparing for what may come. Simple awareness will allow you to move into a situation with your eyes open and can often make a difficult situation manageable.

 
 
 

8 Steps to Caregiving Success 

  

Step 1: To be or not to be a Caregiver

 

As you gain a realistic perspective on your situation, ask yourself whether you have the personal resources, time, desire, or skills to manage the challenges of caring for an aging loved one. When you are caregiving, depending on the stage of need (see below), you literally can be taking on managing another person’s life in addition to your own—from scheduling haircuts to paying the bills to getting the proper medical treatment.

 

It is doable, but can be stressful at times. Having the tools for success is a big key in accomplishing the task with a minimum of difficulty. AgingPro can help in all these areas and more.

 

Decide if you want to go this on your own, if there are other family members, neighbors or friends who can pitch in, or you will want to call in professional assistance. In the days when only one person in the family worked, the other person was able to devote significant time to the care of a parent or loved one. This is not the case for most families today, so support is a key.

 

It’s important for you to know at this point that, statistically, family caregivers have a higher rate of depression, and shortened life span than the general population. This is not necessary! Research indicates these stresses can be attributed to three causes, all of which can be addressed:

1. Being unaware of what is required to provide care,

2. Denying or ignoring the stress that comes with trying to do a job most people have not been prepared for, and

3. Overtaxing the body with tasks the caregiver is simply not strong enough to handle.

With awareness and preparation you can be successful in your caregiving and minimize stress. We are here to help.

 

Talk to your loved one and others who may be involved

 

As you start taking stock of your new situation, you need to know where the affected loved one is with the process. Opening the dialogue with someone who newly requires assistance is not always easy or comfortable, but it will be valuable.

 

In addition to talking to your aging loved one, consider what other friends or family members will want or need to be involved in the care of your loved one. Begin talking about your loved one’s concerns or worries over the current situation, and check out how receptive they are to your assistance. 

 
 

AgingPro Tip: It is important to ask yourself, “What is mine to do in this situation?” Some caregivers will find it is up for them to give hands-on assistance, others will donate money, food or time, and others will do nothing. Be aware that each person is doing the best they can at the moment.

 

Building resentment over what others are or are not doing in the caregiving role is neither productive nor healthy—for you, for them, or for your loved one. Determine what is yours to do, and do it to the best of your ability. You can’t possibly do everything that you think needs to be done. Tell yourself and your loved one, “I love you, and I’m going to do the best I can with what I have and know.” 

 

Who Makes the Final Decision on Caregiving Decisions?

 

Bottom line: Everyone is free to make their own choices. When someone does not have “capacity” (can not understand the consequences of their behavior), this is a different matter. Up until then, the older person is in charge of making decisions regarding their care.

 

When a person no longer has “capacity,” can no longer handle their affairs, and is resistant to the support of others (or doesn’t have a family caregiver), the agent named in their durable power of attorneyhas the right to step in. If they have not planned ahead by signing durable powers of attorney for health care and finances, don’t have capacity, and are still resistant to care, a guardianship (of the person’s health and well-being) or conservatorship (of the estate and finances) may need to be applied for. This is usually used as a last resort. 

 

Generally, conservatorships are established for people with advanced Alzheimer’s disease or other dementia (if there are no immediate loved ones or there are disagreements in the family), people who are in comas, or those suffering severe mental disorders or other serious illnesses or injuries. Obtaining conservatorships involves legal proceedings that are time consuming, are often expensive, and can be emotionally difficult on the aging loved one. Contact an Elder Law Attorney or Geriatric Care Manager and explore all the options to assure the loved one is taken care of properly.

 

Sometimes there can be a fine line between needing to step in to help and allowing a loved one to have their independence. If you are unsure if it is time to step in to offer more assistance, having an assessment done by a Geriatric Care Manager, geriatric physician, or other senior care specialist can be of great benefit. They see these situations every day, and they can take a neutral view of what, for you and/or your loved one, may be emotionally charged. When we are emotionally attached to someone, it is more difficult to determine if they need help and, if so, what assistance will serve best.

 

AgingPro Tip: Something important to consider is that your aging loved one may not be interested in accepting your help. Don’t be surprised if they are not willing to spend their money on hiring professional help either. They may have been raised in the era when people took care of everything themselves or saved every penny they had for “a rainy day." Despite your caring and concern for them, remember that they do have the right of self-determination.

 

This is a challenge, especially when not helping can bring up feelings of guilt in you for not doing enough. Sometimes you have to let someone “fail” before they will accept assistance. And sometimes the person would rather be uncomfortable trying on their own rather than ask for help or be dependent on others. However, it is their money and their life. As long as someone has “capacity,” or (to put it basically) understands the consequences of their behaviors, they have the right to make their own decisions, even if they appear foolish or “bad,” and even if you think you can see a better way for them to do things.

 

Keep in mind that if your loved one refuses your assistance, you do not have to help—and you can certainly ask them again at a later date.

 

Also, be aware that your loved one may prefer professional help over family caregiving to maintain their sense of independence, privacy, or dignity. It may give you peace of mind to have a professional assess the situation to see if it is what you think it is, since it is usually harder to be objective when you see your own loved one in what looks like a not-ideal situation. 

 

AgingPro Tip: Many times your aging loved one will refuse assistance, asserting “I’ve lived this way for 83 years, why should I change now!” One strategy that can be successful is to let them know that the help is for you, not them. “I will sleep better knowing that someone is here cooking and cleaning for you.” Doing something for you allows them to maintain their dignity and pride. 

 
 

Encouraging Agreement from Your Loved One

 

Here are some ideas for creating a safe place to talk to your aging loved one about their accepting assistance:

 

            • Keep your loved one involved in the decision making as much as possible.

• Ask your loved one if she thinks there are any problems (instead of telling her what you think is a problem).

• Find someone they respect to suggest the help (such as a doctor, friend or minister).

• If you hit resistance, don’t fight back. Choose a different day or time to talk.

• Be loving and compassionate while being honest about your concerns.

• Remember your sense of humor.

• Own your concerns. Use the word “I” instead of “you” when discussing need.

• Chose a time to talk when everyone is rested and well fed.

 

An Opportunity for Healing & Growth—for Everyone

 

While this caregiving labor of love can have enormous emotional, physical, social, and financial tolls, there are also real personal and emotional rewards that have the potential to be beyond what you can currently imagine. One key is to be open to seeing the blessings in the situation. 

 

Caregiving can be an extremely rewarding experience, especially if you are open to that as a possibility. Relationships can be healed, incompletes can be cleared, misunderstandings can be forgiven, love and joy can be shared in deeper ways than you can imagine.

 

A recent study by Caring Today magazine revealed that 79% found the caregiving experience rewarding and 60% improved their relationship with the patient during the time they were together. Caregivers reported that being prepared to provide care was a critical element in satisfaction level.

 

Here are some tips in creating positive memories with your loved ones during the caregiving process:

 

• Talk about the good old days. Reminisce about what you both loved about the past: holidays, celebrations, vacations, growing up.

• Assist your loved one in creating a living legacy—a way to hand down family history (audio or video recordings of story telling, or other creative methods).

• Create new traditions and rituals together.

• Find out what is meaningful to your loved one and try to provide it, i.e., do they like listening to music (what kind?), being massaged, watching birds, etc.

• Finish unfinished business. Talk about past hurts or disappointments, successes and dreams.

• Validate their feelings and abilities.
• Listen neutrally and unconditionally.

• Be willing to forgive, especially yourself for judging yourself or others.

• Understand that your loved one is a multidimensional human, just like you, and that everyone has done, and is doing, the best they can with what they know.

• Focus on your commonalities.

• Reflect on what this situation is teaching you or reflecting to you.

• Don’t expect anyone to change.
• Accept the relationship just as it is.

• Be willing to share your feelings, positive and negative, in as loving a way as you can muster up.

• Remind yourself of the reasons you love this person, and share those with them.

• Celebrate small victories.

• Remember to keep your sense of humor handy.

• Look for the good in all people and things, and leave the rest to a higher source.

• Keep your eyes open for the blessings.
 

Step 2: Accepting the Role of Caregiver

 

If you do decide to accept the responsibility of caregiving, then AgingPro Caregiving 101: Tools for Success will assist you in knowing what you will be called upon to do and how to do it. These are set out in a clear and methodical way to guide you through the process of preparing yourself to handle the tasks associated with caregiving.

 
 

Care for the Caregiver

 

Our belief is that you can’t fully take care of another unless you are first taking care of yourself. To that end, we provide many resources to make caregiving easier and to assist you in being successful with the least emotional and physical stress possible. Caregivers must learn to balance their own needs with the needs of their aging loved one. Remember to also look at your loved ones’ strengths during this time when their limitations seem to be overwhelming, so you allow them to do what they can.

 

Utilize Your Strengths

 

Acknowledge your strengths and limitations. Assign roles and jobs so that all tasks actually get done rather than everyone duplicating things or having nothing done at all. What are you good at doing? Are you best at:

 

• Making phone calls and gathering information

• Supervising employees or caregivers

• Speaking to medical professionals

• Providing emotional support

• Paying bills, managing money

• Securing the needed professionals

• Researching online

• Making meals
 

Accept your limitations

 

Ask yourself what your limits are, and continue to monitor them along the way. Honor yourself and what you can give. There is no need to compare yourself with others or try to live up to a fantasy of what you think a “good caregiver” would do. 

 

• How much time can you really spend on caregiving? (Consider your job and family.)

• Are you emotionally ready to take on the role of caregiver?

• If needed, how much money can you comfortably contribute for care?

• Realistically, what type of situations do you feel you could not participate in?

• Are there certain days of the week that you are available, or more readily available?

• How will you know if you need a break from caregiving?

• How do you react when you are stressed or overwhelmed?

 

Build a team

Build a circle of support, a team to help carry the load. Call on other family members and friends who are willing to help with caregiving duties. Of the tasks and responsibilities that need to be done, objectively consider what you can do and what others in your support system can do?

If you are a long-distance caregiver, those residing closer to your loved one may be able to join your care team. Who is in regular contact with your loved one? Candidates include: neighbors, close friends, church members, clergy, housekeepers, nearby siblings or family members. Create a list of those who agree to assist and keep it in a notebook. (The AgingPro Caregiver’s Notebook has been designed to assist you in keeping information like this organized and readily available to you when you need it.)

AgingPro Tip: An important aspect of AgingPro is to offer you the information and resources you might need in your caregiving role. One of the benefits of availing yourself of this information is that, in the future when your mind starts doubting whether you did a good job or judging how you cared for your loved one, (“I could have…” “I should have…” or “I would have…”) you can have peace in your heart knowing that you did everything you possibly could have done.

 

Get Support for Yourself

 

Once you start giving care to your loved one, share your experiences. Talk to others about what is happening in your life. Get things off your chest. Learn how others have coped with and triumphed over challenges similar to yours.

 

Burying or denying your thoughts and feelings can cause extra stress and have negative health impacts. Choose healthy outlets for your feelings, frustrations, worries, and rewards. Social support is the physical and emotional comfort given to us by others, and knowing we are part of a community of people who love and care for us. Researchers overwhelmingly praise the benefits of social support. They find:

 

Social support provides positive experiences for both care provider and the one being cared for.

• The lack of social support is a risk factor for poor health.

• Conversely, social support can have direct positive effects on health.

• Receiving social support can buffer some of the negative effects of aging

    associated health declines.

• Social support can decrease stress.

• Social support can protect people in crisis from a variety of pathological states, from alcoholism and depression to arthritis and death.

 

Social support can be instrumental or emotional.

 

Instrumental social support is more physical in nature, such as having someone provide assistance with day-to-day problems. In addition to relieving you of a care burden, this can also prevent or delay institutionalization of your loved one.

 

Emotional social support improves adjustment to the changing health conditions. For example, feeling supported can help you head off feeling depressed. Emotional support can come from friends or loved ones. It can also come from pets, a strong belief in a religious/spiritual philosophy, being involved in supporting a cause. One valuable definition of social support is from Sidney Cobb, who proposed that “Social support is information leading the subject to believe that he is cared for and loved, esteemed, and a member of a network of mutual obligations.”

 

The AgingPro community discussion boards are a great source of social support. You can ask questions, get support and helpful tips, and make friends as you learn from others who have been through similar situations.

 

Balance Work and Eldercare

 

While balancing work and eldercare can be challenging, it is very important. A recent MetLife study found that caregiving costs American employers as much as $33 billion annually due to employee resignations or decrease of work time due to stress. Another study showed that because of caregiving responsibilities, 37% of respondents had to quit their work or reduce their hours. As a result, many large companies are now providing benefits for employees who are caregivers for older adults. This is a move to retain employees and reduce stress for employee caregivers so they can continue to work effectively. Consult your Human Resource or Employee Assistance department for what your company offers, such as information, referral, and education programs.

 
Consider Hiring a Professional
 

One choice, to simplify your life, is to hire a Professional Geriatric Care Manger. Geriatric care managers are health and human services specialists who help families manage the many challenging of aging. They act as advocates and problem solvers in all areas of eldercare: such as navigating the medical system, finding companion care services, or mediating difficult family dynamics that arise. While their services do cost, in the long run a Geriatric Care Manager can save you money by assisting you to avoid costly mistakes, reducing lost work time, saving you precious time in finding resources, and, perhaps most importantly, applying their experience to many of the stress-causing responsibilities not directly involved with hands-on care.

 

Having a neutral professional involved can have other benefits as well. A person outside the family who can validate the challenging decisions of caregiving can alleviate family tensions and guilt. Also, it is not uncommon for a patient to disclose facts to an outside professional that they aren’t comfortable mentioning to those close to them. 

 

A Care Manager may be trained in fields related to long-term care, such as social work, nursing, gerontology, or psychology, with a specialization in issues related to aging and elder care. Many belong to the National Association of Professional Geriatric Care Mangers (NPGCM), and may be certified by that organization. Care Managers charge from $300 - $800 for an assessment and from $75-$200 per hour for their services.

 

A Care Manager can be involved as a coach to get you through the challenges or he or she can handle everything for you. Care Managers are usually paid privately, but some insurance companies are beginning to cover a portion of their fees.

 

To locate a Geriatric Care Manager near you, check the AgingPro Directory or the NPGCM website (www.caremanager.org).

 

Another option is to find a local senior center or community organization that offers short-term case management for older adults. Go to AgingPro’s directory search for Area Agencies on Aging or go to www.eldercare.gov and look under Aging and disability resource center for information on your local Agency on Aging office. Often their services will be free of charge, but know ahead of time that because of this they are sometimes overworked and difficult to access.

 

Hold a Family Meeting

 

Communication is one of the most valuable tools you will have as you move into care giving. Have family meetings, and include everyone on the caregiving team. Consider inviting a professional (Geriatric Care Manager, counselor, minister, or social worker) to facilitate productive communication.

 

You may or may not want to include the person who needs the care. Although typically everyone involved wants to be invited, each situation is different, and the highest good of the person in need must be considered. If the person who needs care has dementia and there is a chance that they may misunderstand the meeting, it may be best to meet without them, at least for the first meeting. Under such circumstances, consider meeting with the loved one at a subsequent meeting.

 

Hold the initial meeting at a place where everyone will feel comfortable, and at a time when people will have plenty of energy and patience. In other words, after a long day at work is probably not the best time for this very important session. Long-distance caregivers can join the meeting by phone if needed.

 

Organizing the Meeting

A meeting about caregiving is more than a simple get together. The changes in your loved one’s situation is likely to have far reaching effects on the lives of many in your family. So we suggest approaching this meeting as if it were a business meeting.

 

Prior to holding a family meeting, it is a good idea to create an agenda and distribute it so participants will have time to contemplate and prepare their thoughts and ideas. The following is an example of agenda items:

·         Review the latest physicians report

·         Share feelings about the illness/caregiving

o        Anger over the illness / condition of your loved one

o        Frustration that the doctor doesn’t call back

o        Excitement about treatment working

·         Share fears about caregiving and the declines of your loved one

o        Fears about death and dying

o        Worries over doing a good enough job of caregiving

o        Symptoms of being overwhelmed

o        Anger, resentment, confusion, joy, disappointment 

o        How is your loved one doing and feeling? 

o        Are there new symptoms to discuss?

·         Daily caregiving needs: 

o        Where should the sick person live? 

o        Should she move in with us? 

o        Set up a caregiving schedule around people’s availability? 

o        Are there any new caregiving needs or duties?

·         Financial concerns in caregiving: 

o        How much will the new housing facility cost? 

o        How many days can the caregivers take off work? 

o        What other programs might be available to help? 

·         Who will be in charge of making decisions (e.g., financial, legal, medical, hiring a caregiver, etc.)?  

·         What roles do involved caregivers want to take? 

·         Does the primary caregiver(s) need any specific assistance? 

o        Do the need a break from caregiving?

o        Do they need meals delivered, laundry done, bills paid? 

o        Do they need emotional support, such as a phone call or visit?

o        Do they need help with chores or getting to appointments? 

·         Problem Solving 

o        Discuss current needs and how things will get done

·         Summarize the meeting and plan for the next meeting

o        Write down what each person agreed to do

o        Create email or phone methods for update notices

It is also important to have ground rules for this meeting to avoid unnecessary tensions. Ground rules are pretty straightforward and can include:

 

• One person talks at a time

Take responsibility for you own thoughts and opinions by using “I” statements (“I feel that…”), instead of “You” (“You never…”).

• Speak for yourself (“I think”) and not for your whole family (“we think”).

• Create a safe place for everyone to talk about their feelings, fears, and concerns.

• Encourage everyone to share their ideas and listen to everything that’s said.

•Accept/respect other people’s views and feelings. This does not necessarily mean that you agree, just that you accept.

• Be aware that people are bringing their emotions to the meeting (including you). Do your best to be patient and look to the information beyond the feelings.

• No blaming or criticizing.

 
Holding the meeting

Begin the meeting by stating perceived problems or challenges. When all the challenges have been expressed, move on to finding solutions. Work toward consensus and be willing to compromise.

 

In a family meeting with the person needing care involved, attempt to get answers to these types of questions:

 

• Where do you want to live out your life? Home? Retirement community?   Assisted Living? (Most people want to remain in their own home for their entire lives. If that’s the response, then you will need to determine if that is attainable)

How do you feel about living in an adult community?
• What are your priorities? What is important to you? 

• Do you think you need any assistance?

• Are you happy with your life now?

Who would you feel comfortable talking to about decisions that need to be made, such as: finances, medical care, and housing?

 

Putting it all together

Once you have all the information you need to know, make a plan, divide up tasks and arrange to meet again in a month to discuss progress. Make sure all agreements are in writing so everyone understands the same thing. Written agreements can also be used as reminders in case anyone forgets or is unclear as to what they agreed they would do.

 

Additional important questions for the patient

At some point there is another whole level of questions that need to be addressed with the loved one. In our culture these are things that are usually ignored or denied until the situation absolutely requires them to be considered, and that’s probably the worst time to have to deal with them. Whether at a family meeting or in a subsequent get together with a person the patient feels comfortable with, do look at them, it’s best to deal with these issues early on when they can be considered with relative neutrality. These questions include:

 

• Is there anything you’ve always wanted to do that you haven’t done yet?

• How do you feel about dying? 

• What type of treatment do you want used at the end of your life, i.e., Pain medication? Ventilator? Respirator? Resuscitation?

• Do you have a durable power of attorney for healthcare and healthcare advance directive, to specify who will make decisions on your behalf if you no longer able to, and to specify treatment you would like?

• Do you want to be buried (where, next to whom) or cremated?

• Is there anything specific you’d like done at the end of your life (a celebration of your life, a wake, a funeral, etc.)

 

Make sure you are clear on all of these issues, and put them in writing. Have your loved one look them over to make sure they are correct. Handle the issues that can be handled early, like setting up a durable power of attorney. If the patient has things they wanted to do, and they can in practicality be done, be sure to support them in doing them.

 

While it may seem like having this discussion will be uncomfortable, it doesn’t have to be. In fact, all concerned may feel a great deal of relief once these issues are out in the open and are being dealt with.

 

Step 3: Assessing the Situation

 

The process of gathering information and interpreting it is the foundation for care decisions. In order to determine whether you and/or your family/friends will be able to provide care for your loved one, you need to know the real story. You need to take a step back and look at what is really needed. This is much like a detective looking for clues, taking everything into account so the best decision can be made. There is no other way to assure the right service is delivered at the right time in the right manner.

 

In some situations you will find that your loved one does not need help now, but will need help down the line. In other circumstances care will be needed immediately or in the very near future. Whatever the situation, you will want to get the facts so you can accurately evaluate your options.

 

Getting a clear picture of the situation involves two things: 1. Knowing what to look at, and 2. knowing what to look for. The information below will give you an overview of these two areas.

 

If you feel a more in-depth evaluation will be helpful you can purchase an AgingPro Caregiver’s Manual. This well-organized manual has detailed checklists and forms to assist you in gathering the proper information and resources that are invaluable to caregivers. It will guide you through these processes and make it easy to organize and use the information you come up with. You can see a more detailed description and sample pages of the manual by going to this link.

 

Gathering specific information for accurate assessment

 

Each individual and situation is unique, yet most people go through three basic phases as they age. Below you will find eight areas of assessment—what to look for and at, questions to ask, and tips for maintaining an ongoing evaluation so you will be aware when your loved one moves to a different phase and needs a different form of care.

 

Assessment is an ongoing process because needs change over time. By regularly assessing the situation, you will acquire an understanding of the problems and concerns, what causes them, and what can be changed to resolve them. You will also become aware of your loved ones strengths and talents.

 

Each area identified below has questions to answer or reflect on. This will guide you in becoming aware of how much help your loved one needs, and in which areas.

 

Sometimes, your aging loved one will go through phases of needing care, from informal to full-time, and then will be able to care for herself again. Depending on the individual situation, some individuals go through each phase progressing from one to the next, others can go from needing no assistance at all to requiring full-time assistance immediately (such as after a fall or stroke). So continual awareness is necessary.

 

When it comes to care for the aging, hope for the best and still be prepared for the greater challenges.

 

The Phases of Caregiving Needs

 

Here is a description of each phase. Following this is a checklist of what to look for in different areas to assess the phase your loved one may be in and what type of care they may need.

 

Phase  1: Informal assistance will handle it

Assistance at home often begins informally. It might be enlisting a neighbor or friend to help an older person go grocery shopping, run errands, bring out the trash cans, bring in the mail, clean the house, get to a doctor’s appointment, or make phone calls to check in or remind them of an appointment. If you can find a neighbor or someone nearby to do that, it will be a tremendous help. However, at some point the time may come that more help is needed than neighbors can easily offer. 

 

Phase 2: Part-time caregiving is necessary

This phase entails maintaining the aging loved one’s independence at home. At this point, the older person can manage most aspects of their life, but needs assistance to remain independent at home. To remain safe and happy, they need dedicated family or professional care to some extent. 

 

Phase 3: Full-Time caregiving is required

At this point, the caregiver is dealing with every facet of the older person’s life. This phase is when the older adult is unable to manage by themselves anymore, and they need complete assistance. This is most typical with moderate to advanced Alzheimer’ patients, for example. Individuals can either remain at home or move to a living facility where assistance is readily available.

 

Areas of Assessment

 

The following checklists will assist you in assessing where your loved one falls in the three stages so you can gain a sense of what is needed now and whether the status may be nearing a change point.

 
 
A ü Home/Physical Environment Status
 

Consider the following to determine if assistance is needed and, if it is, to what extent.

 

Stage One

• Is the trash being taken out?

• Is the mail being brought in?

• Is the house and yard being cared for or is a gardener or homemaker needed?

 

Stage Two

What can your loved one do independently, where do they need assistance with activities of daily living, and what can they not do at all?

 

Rate the following according to this scale: Does the person do these activities:

1) by themself, 2) with some assistance, or 3) requiring full assistance?

 
ACTIVITIES OF DAILY LIVING (ADLs)    

• Toileting; control of bladder and bowel -

• Hygiene (bathing, etc)
• Getting in and out of bed
• Ambulating/Walking around
• Dressing
• Eating
 

INDEPENDENT ACTIVITIES OF DAILY LIVING (IADLs)

• Meal preparation

• Shopping

• Mobility

• Driving/Transportation

• Taking medications

• Reaching light switches

• Home security

• Ability to use phone

• Housekeeping & laundry

• Managing home repairs

• Money management

• Using the telephone

• Ability to respond in an emergency

 

Once you know the answers to the above, consider the following issues as part of a home safety check, and take action where necessary.

 

• Can arrangements be made to hire help or make home improvements that would reduce upkeep?

• Is the hot water set at less than 105 degrees so it won’t scald?

• Are ramps needed to get in and out of the house safely?

• Are grab bars needed, especially near the toilet and in the shower/tub area?

Is the present living arrangement convenient and safe? (Consider stairs, laundry, bathroom, and storage areas)?  

• Is there an emergency response system?

• Is there decaying food in the refrigerator?

• Does all the plumbing in the house work, are there any leaks?

• Do the toilets flush properly?
• Are there burnt pots and pans?

• Are any family, friends, doctors, church, and medical facilities nearby?  

• Is your loved one happy and comfortable with the living arrangements?

• Does your loved one still drive? If so, does their car have new unexplained dents?

• Is there a telephone within easy reach of your loved one in the living room and bedroom?

 

Most seniors prefer the familiar surroundings of their home, and in many cases the home is just fine, either as it is or with minor modifications. Here are some resources that may assist you in making your house more elder-friendly:

• Grab bars by the toilet and near the shower/tub – (Moen now offers decorator designs that are very attractive) (Look at the AgingPro store for options)

• Smoke detectors with lights or that vibrate, all in proper working order (Look in the AgingPro store for options)

• Anti-Scald shower device such as HotStop or ScaldShield

• Carbon monoxide detector (Look in the AgingPro store for options)

• Telephones with large buttons and volume control (Look in the AgingPro store for options)

In addition, consider whether there is a trusted friend or family member who can live in the home with your aging loved one.

 

AgingPro Maintaining Independence Tips                                                        

• Hire an Aging In Place Specialist to assess the home and suggest options for home modifications                                                              

• Make sure the home has proper lighting, inside and out                                  

• Look in AgingPro’s store under Products for Home Support for ideas on how to adapt to the changes of aging                                                         

 
 

Stage Three

•If it is apparent your loved one is not capable of managing themselves in their home environment, do they still want to live where they are living?

• If so, are there friends or family members that can live in the home with them?

• Are they now a safety hazard living alone? (Do they often leave the stove on, for example?)

• Is their living alone presenting a danger to themselves or close by neighbors?

 
 
Bü Health/Medical -
 

It is important for you to know your loved one’s current medical condition. Get a complete medical history and make a list of any diagnoses, illnesses, surgeries, medications, physicians and medical team. Consider getting your loved one’s permission to accompany them to their doctor’s appointments.

 

If your loved one has been diagnosed with a disease or specific physical or cognitive problem, it is vital to have a complete and accurate medical diagnosis for it. Gather as much information about the condition as possible. Use the internet or library to research and learn as much as you can. There are also some disease-specific organizations like the American Cancer Society or the American Heart Association that can provide information.

 

As far as general health is concerned, here are things to look for with your loved one:

 

Phase One

• Is a cane or walker needed for mobility?

• Is there proper/adequate medical and prescription insurance?

• Do they need the assistance of a medication reminder system?

• Do they need assistance talking with doctors or interpreting lab results?

• Can they schedule needed follow-up or specialist visits with doctors?

 

Phase Two

• How are activities of daily living (ADLs) being managed?

• Do they have any allergies that require special conditions? 

• Are they drinking enough water and liquids to stay hydrated?

• Are they getting proper nutrition, or are home-delivered meals needed? (Are they only snacking, making poor food choices, lacking food in the home?)

• Is their personal hygiene declining? (clothing stained, body odor, infrequent bathing or washing hair)

• Are they incontinent or constipated?

• Are they losing weight?

• Are they getting regular physical check-ups?

• How’s their dental hygiene? Are they getting their teeth cleaned regularly?

• Do they have poor vision? Do they have the proper corrective glasses?

• Is there any hearing loss? Do they need a hearing aid?

• Do they have difficulty remembering doctor’s instructions after a visit?

• Are they clear about their medication—which medications they should be taking, when to take them, and why they are to be taken?

• Are there special needs associated with their medical conditions?, i.e., a hospital type bed, oxygen, etc.

• Can they open their pill bottles by themselves?
• Are they getting enough regular physical activity?

• Are they having frequent falls? Do they have unexplained bruises?

 

Phase Three

• If your loved one moves to an assisted living or other residential facility, will they still be able to keep their current health insurance and current doctors?

• What type of caregiving assistance do they require?

• If terminally ill, will the doctor prescribe hospice to provide care at home?

 

AgingPro Maintaining Independence Tips:                                        

• Use a medication reminder device.                                                      

• Use an electric lift chair for help getting up after being seated.      

• Get a USB-type computer data storage product to keep all medical information.                                                                                           

• Make sure everyone involved has healthcare durable power of attorneys/living wills completed, and copies are with doctors, hospitals, and agents.

 
 
Cü Financial –
 

No matter whether you’re looking to the future or the need for care is imminent, it’s always a good idea to have a very clear picture of the financial realities. In order to plan effectively you need to know not only your own financial situation, but the specific finances of your loved one and their ability to manage financial matters. The following will assist you in gaining awareness of what to look for.

 

Phase One

• Does your loved one need a ride to the bank?
• Who does the banking?
• Are their checks, such as Social Security and pensions, being automatically deposited?
• Do they need assistance balancing their checkbook?

• Do they have Medigap (supplemental) insurance to help cover what Medicare does not?

• Are their bills up to date?
 

Phase Two

• Are the bills being paid? (mortgages, home and auto insurance, taxes, and utilities)

• Is home and auto insurance up to date?

• Are present housing expenses reasonable and will they continue to be?  

• Are credit cards being used for spending beyond their means?

• Are they still able to handle money responsibly?

• Are they vulnerable to being a victim of a scam or financial abuse?

• Does anyone else have access to their bank accounts/finances if needed?

 
Phase Three

• Do you need to set up automatic payments and online banking access to handle all financial affairs

• Financially, is 24-hour live-in care an option?

• Do you need to research a home equity loan or reverse mortgage to cover expenses?

 
 

Dü Cognitive/Mental

 

This is perhaps one of the most important areas to observe and assess. With diseases like Alzheimer’s and other types of dementia being so widespread, you will want to be aware of your loved one’s ability to mentally handle living independently.

 

Phase One

• How is your loved one’s memory or thought processing?

• Do they need telephone reminders of upcoming appointments or to take medication?

• Have you noticed any changes in their memory or behavior over time?

 

Phase Two

• Is your loved one calling you or others repeatedly at inappropriate hours of the day and night?

• If their memory is declining, has it been a quick decline, or slow and gradual?

Are they increasingly forgetful? (missed doctor's appointments, family events, forgetting names, word-finding difficulties, losing things)

• Do they get lost in familiar places?

Do they repeat the same story frequently?

• Do they have difficulty remembering things they once easily recalled?

• Do they frequently start a task and forget to finish it?

• Are memory difficulties because of dementia or delirium or depression?

• Are they demonstrating poor or decreased judgment?
• Are they paranoid or forgetful?
• Are they confused or anxious?

• Are they forgetting to take their medications, or taking them improperly?

• Do they frequently misplace things?

• Are they easily confused? Is the confusion so bad that they can no longer manage alone safely?

• Do they seem oriented to time and place. Are they confused about who they are?

 

Phase Three

• Are they having delusions or hallucinations - seeing objects that others don’t see, or holding false beliefs (like neighbors are breaking in and stealing from them)?

• Do they wander off and can’t find their way back home?
• Do they leave the stove on or unplug the refrigerator?

• Is a conservatorship or guardianship necessary? (This sometimes becomes necessary if the loved one is judged unable to manage their property properly or if they are legally incompetent?)

• How are you managing their difficult behaviors?

 
 
Eü Psychological/Emotional –
 

Loss is one of the most emotionally difficult things we face as we age. We inevitably experience the loss of friends and family members, loss of independence, loss of health, and loss of confidence. With some talking and investigation, a lot of love and patience (and possible medication intervention), the grief, depression, or anxiety that sometimes accompanies loss can be identified and treated.

 

Hiding feelings is a behavioral tool that protects us from painful feelings (including resentment, anxiety, fear, and depression). Sometimes older people use this technique to deny the truth about how serious their condition is or how much assistance they truly need as a means of coping with their changing situation.

 

Coping strategies to be on the lookout for can include denial (refusing to acknowledge something that has taken place), avoidance (finding ways to dodge uncomfortable situations), exaggerating, misdirecting anger (directing anger towards a safe relative instead of who the anger really is aimed at), and somatization (when a psychological problem turns into a physical and subconscious problem - from a skin rash to heart problems).

 

Because coping mechanisms are used to manage stress, don’t be in a hurry to force your loved one to look at their self-deceptions. Be aware of them as indications of what may be the issue(s) at hand for your loved one.

 
Phase One
• What is their current emotional state?
• How do they feel about getting older?
• What keeps them going and inspired?

• Where have they found strength in the past—and are they still capable of accessing that?

 

Phase Two

• Are they isolating themselves and staying home most of the time?

• Are they having mood changes? (Anger, suspicion, paranoia, agitation.)

• Are they having symptoms of depression? (Crying, sadness, lack of energy, increase or decrease in sleeping and/or appetite.)

• Do they lack interest in formerly enjoyable activities? Have they stopped participating in social, family, church, or volunteer activities?

• Are they confused or anxious?

Has there been any significant life event or trauma during the past year?

 

Phase Three

• Are they abusing drugs or alcohol to cope with their feelings or pain?

• Are they participating in social activities in any form
• Are they sleeping most of the time?
• Do they cry often?
• Have they ever threatened suicide, or had a plan to end their life?
 

There are a number of questions that will give you insights into your loved one’s psychological state:

 

• Is your loved one satisfied with her or his life? 

• Have they dropped activities that they once enjoyed? 

• Are they reasonably happy? 

• Do they feel they have a reason to live?

• Do you suspect depression?
 

Concerning depression: Depression is not a normal part of aging, and is often reversible with prompt and appropriate treatment. If left untreated, depression can have significant effect on physical, mental, and social functioning, along with delayed recovery from medical illness and surgery, increased health care utilization. It can even lead to suicide. If depression is apparent more often than your loved one has demonstrated in the past, prompt professional follow-up is recommended.

 

To check for depression, you can administer the Geriatric Depression Scale (GDS) (short form). The GDS short form is a 15-item self-report assessment used to identify depression in the elderly. While the GDS is not a substitute for a diagnostic review by a medical professional, it can give you a reliable indication as to whether further assistance is necessary.

 

If you have concern about your loved one’s psychological state, or think they may be depressed, contact their primary physician, a psychologist, or a geriatric psychiatrist.

 
 
Fü Social Evaluation
 

Social life is one of the key elements in keeping all of us healthy and vital.

 

Phase One

• What activities is your loved one interested in?

Do they have transportation to get to these activities?

• Do they have friends or neighbors they spend time with?
 

Phase Two

Does the neighborhood offer social, recreational, and religious activities your loved one would be interested in?

• Who and what are the social support systems currently in place?

• Do they have people in their life that value them?

• Who is important in their life right now?

• Who was important in their past?

• What losses within their family and/or of close friendships have they suffered?

• Does your loved one have support from friends, neighbors, or church?

• Who does your loved one call when they need assistance? How quickly can that person respond?

• Would your loved one be interested in activities at the local senior center?

• Do they have friends that can give them rides to activities they both participate in?

• Do they have friends who would call them or write notes or emails regularly?

• Is your loved one able to volunteer in the community?

• Are their any current family or friendship stressors?

 

Phase Three

• Would your loved one benefit from a Adult Day Health Care program?

• Do they have friends that could stop by and visit them?

• Would they benefit from the socialization of an assisted living facility?

• Are there volunteers in the community that could visit them?

• Are they afraid to socialize because of their physical or mental decline?

 
 
 
Gü Legal
 

Next to medical and financial questions, legal ones can touch the most sensitive areas for family members and the loved one. Nonetheless, they must be addressed for everyone’s benefit, and everyone will rest easier knowing they are handled.

 

Phase One

• Does your loved one have an attorney?
• Do they have any of the following:
• A will
• A living trust

• A durable power of attorney for health care/living will

• Advance directives
• Financial power of attorney
 

Phase Two

•Review their legal documents such as Advance Directives and Durable Power of Attorney forms to see if they are up-to-date and in order. This is an area you may want to explore with a professional who deals with the legal considerations of the elderly. Elder law attorneys specialize in the needs of older adults. A Professional Geriatric Care Manager in your area would have referrals to local professionals in this field.

• Do doctors, hospitals and involved caregivers have copies of your loved one’s advance medical directives and power of attorney?

• Does your loved one need help with pre-planning for Medicaid/MediCal?

 

Phase Three

• Does your loved one have a do-not-resuscitate order signed by the doctor?

• Do all caregivers have copies of the durable power of attorney, so they are able to 

    speak with doctors and hospital staff if needed (due to confidentiality laws)?

 
 
Hü Spiritual Support & Participation
 

Even people who have not generally pursued religion or spirituality often turn to it as a source of comfort as they become older. Do not look for logic in their choices; look for an increase in peace of mind.

 

Phase One

• Does your loved one have a source of spiritual support?
• Is this spiritual support important to them?  
• How do they get their inner spiritual needs met?
 

Phase Two

• If affiliated with a church or organization, does it offer support for the elderly?

   If so, what type of support do they offer? 

• If the organization offers support, how do you get in contact with them?

• Does your loved one need assistance with transportation to their faith events?

• Are they missing events because they no longer feel comfortable in public (possibly due to memory decline)?

 

Phase Three

• Does their faith support have people who can come to the house to visit?

• Are there programs on television they enjoy watching for spiritual support?

• Are there supportive books that they can read, or have read to them?

 
 
 

Step 4: Organizing Information and Resources

 

You’ll want to gather essential information and documents as soon as you can because you never know when you will need them. In the middle of a crisis is not the best time to be seeking vital information. Now is the time to start. For a full list of essential documents and information, click here. The AgingPro Caregivers Manual also has handy forms and checklists so that you can gather and have easy access to all the needed information whenever you need it. The Manual is easy to use and update.

 

The following is an example of your loved one’s information and documents to gather and organize

 
PESONAL INFORMATION
• Social security number
• Date of birth
• Drivers License
• Credit Card(s)
• Legal and professional advisors
• Support team contact information
 
IMPORTANT DOCUMENTS
• Banking/ investment account information
• Birth certificate or Passport
• Contact information for friends and neighbors
• Trusts and wills
• Healthcare Durable Power of Attorney
• Advance Directives
• Financial Power of Attorney
 
MEDICAL INFORMATION
• Doctors names and phone numbers
• Medical conditions and current medications
• Allergies
• Insurance plan membership cards
 
EMERGENCY PLANNING

The following are things to know in the event of a local emergency situation, like an earthquake, flood, or other natural disaster event.

• How to effect an evacuation.

• Communication procedures (i.e., can you use land line phones, set up a central out of town relative to be the check in person for everyone, etc.)

• What is the local disaster plan?

 
 

Step 5: Developing a Care Plan & Taking Action

 

Now that you have assessed your loved one’s situation, or a care situation is upon you, what are the major concerns or challenges? Specifically, what type of assistance does your loved one need?

 

The assessment and information gathering steps will prepare you to determine areas of need related to home safety, health care (including activities of daily living and medication management), financial, legal, cognitive, psychological, social, and spiritual needs. Armed with that information, it is time to write down what is actually required, and find solutions.

 

The following section presents options for immediate and long-term solutions. If you need assistance solving the problems you have uncovered, this is what Professional Geriatric Care Managers do best. We encourage you to contact one if you begin to feel you are in over your head. Whether just for assistance in getting your bearings in the world of eldercare or to assist you all the way through the process, we believe you will find their support well worth the cost.

 

Evaluating Your Assessments

 

In your opinion, in what areas of life does your loved one need help and in which of these areas will she or he be accepting of help (i.e. help with personal chores, companionship, memory, home modifications)? Give this some thought, as this is a key to creating a successful plan of care for your loved one. Write down what the concerns are, and possible solutions you are currently aware of. Keep in mind that your aging loved one deserves the dignity of their choice, whenever possible. 

 
Consider the following with these two things in mind:
a. What does your aging loved one want?

b. How does your loved one evaluate the concern/problem?

 

Concern/Issue            Desired Outcome/Goal         Intervention/Solution    Timeline

1.
2.
3.____________________________________________________________________________
4.____________________________________________________________________________
 

Types of Community Care Services 

 

Learning about the types of services available is key to successful caregiving. Contact your local senior center or Area Agency on Aging to inquire about programs in your area, or type in your zip code into AgingPro’s “Need Professional Care in Your Area Now” box. The following is a list of community based eldercare resources and solutions for you to consider:

 
• Adult day care
• Meal programs or delivery
• Transportation services
• Senior Centers

• Volunteers or “friendly visitors”

• Telephone reassurance
• Chore services / Cleaning
• Home repair and modification

• Support groups for the patient (or caregiver)

• Respite services (People who can give you break when needed.)
• Financial services
• Legal assistance
• Consumer protection
• Health insurance counseling
• Hospice Services
 

While the definition of some of the resources listed above might seem obvious, when it comes to eldercare they may have different or more specific meanings than what most people think they mean. We have prepared the following to assist you in understanding clearly what some of these terms mean.

 

Adult daycare

Adult daycare is an away from home daytime program providing respite for caregivers and therapeutic activities for cognitively or physically impaired older adults. These programs provide social activities (and some offer health and therapeutic services) for people with Alzheimer’s or related dementia, chronic illness, or other problems that increase their care needs. 

 

Fees range from $25 - $70 per day and average out at about $56 per day. Some facilities work on a sliding scale, and some take Medicaid. Some long-term care insurance policies cover adult care.

 

Most centers provide transportation, either free of charge or for a fee. Most sites are licensed in the state where they are located. If you are considering this option, you will want to do some research, and visit different locations to find a good match for your loved one.

 

Meal programs

Meal programs can assist an older loved one to stay at home and live independently. There are two types of programs to consider, depending on which will best fit your loved one’s ability to get out of the house and their interest in being with others.

 

Congregate meals, are inexpensive meals served in a group setting at a location like a senior center.

 

Home-delivered meals (such as Meals on Wheels) are just that; meals delivered daily to your loved one’s home.

 
 
Transportation

Transportation services vary widely depending on your location. They may be difficult to access in rural areas, however most larger cities have transportation programs for older adults.

 

The Americans with Disability Act mandates that public transportation must be able to accommodate people who are disabled. Many programs are available at low cost to seniors, but may be limited to rides to certain areas or only to medical appointments.

 
 
Types of Home Care Services
 

Home Health Care

 

Sometimes in-home caregiving support is what is needed to keep your loved one happy and safe in her or his own familiar environment. Home health care is a broad term that covers a spectrum of services, as the name implies, in the home. Some home health care workers are employed by agencies and others work independently. Home Health Carediffers from Caregiving Agencies/Non-Medical Companion Care in that Home Health is considered “skilled” (such as work done by nurses) versus companion care.

 

Medicare-certified home healthcare agencies provide skilled services and are often covered by Medicare if the patient meets Medicare guidelines. These guidelines include being under a doctor’s care, being homebound, the service is identified as a medical necessity, is a necessary therapeutic intervention, or are hospice services. These agencies bill Medicare directly. Services are usually performed by professionals, such as registered nurses (RN), licensed vocational nurses (LVN), physical therapists (PT), or occupational therapists (OT).

 
 

 Caregiving Agencies / Non-Medical Companion Care

 

Caregiving and home-health agencies employ workers trained to help with the needs of older people – from shopping to housekeeping, from medication reminders to personal care. These employees may be identified as certified nurse assistant (CNA), home health aide (HHA), companion, or personal attendant.

 

Hired caregivers are available on an hourly or daily basis. Usually agencies have minimum hour requirements (typically 4 hour minimum). Under most circumstances and barring the need for specialized medical care, typically a companion or CNA is all that is required for your loved one to remain at home, no matter which phase of care your loved one falls into.  

 

Agencies handle employee status differently – some hire independent contractors to provide the services while others hire on providers as employees of the agency. An independent contractor is responsible for her own taxes. If the caregiver is an employee the employer is responsible for paying their taxes. These differences can affect you legally, so you want to check with your tax or legal advisor before making a choice as to which situation is best for you.

 

Hiring an attendant privately can be more affordable than going through an agency, but it is important to be wise about who you hire. Personal recommendations are one of the best ways of finding a caregiver. Another option is consulting attendant registries, which are agencies that help you find a caregiver. Whatever type of agency you use, inquire about their screening process and/or training program, and insurance the agency carries on their employees.

 

If you hire someone privately, consult a tax or financial professional to learn about the legal and tax issues involved. You can find  information on paying federal taxes for household employees by going to the IRS website (www.irs.gov) and asking forPublication 926, the Household employer’s tax guide, as well as for instructions for Schedule H (form 1040).

 
 
 
Once Long Term Care is required
 

Most long-term care includes assisting people with activities of daily living such as bathing and dressing and can be provided for at home or at a specialized facility. This type of care is referred to as “custodial care” (non-skilled care) versus “skilled” care. About 60% of individuals over 65 will need some form of long-term care during their life.

 

The trend in long-term care is for people to “age-in-place” or “age at home.” Identifying methods and care plans that allow individuals to reach this desirable situation is what Professional Geriatric Care Mangers and Certified Aging-In-Place Specialists do best. 

 

How to find help locating long-term care services

 

Trying to identify and find services for older adults has often been compared to navigating a maze. It can be complex and confusing, especially if you are feeling pressured to act in a hurry. However, there are many useful services and programs available, along with good people doing great work. AgingPro is here to bring these services together and make them accessible to you.

 

The section below lists resources for finding the services you need, either offered by government agencies or private enterprises, including ours. 

 

• AgingPro directory

Find professionals, services, products and information for everything about Eldercare

• Your local Area Agency on Aging

Referral services to local services www.eldercare.gov

• Disease-specific national organizations

Most major diseases are associated with national organizations that provide education on them. They can refer you to disease-specific services and specialists. See AgingPro directory for links.

• Local senior center

Senior centers offer services themselves or have referral services

• Dial 2-1-1 on your phone

Information and referral by trained operators, most areas of the U.S. are covered

• Your local Yellow Pages

A resource for finding nursing homes, lawyers, home health and caregiving agencies

• Geriatric Care Managers or Hospital Discharge Planners

Care managers are experts who can offer referrals to services in your community

• Employers

Some workplaces offer assistance programs with referrals for eldercare needs

• Local Non-Profit and Community-Based Organizations

The Jewish Community Centers, Lions club and other community groups offer services or referrals.

• Internet

Many websites offer information and referrals to eldercare services.

• Physicians

Sometimes your local physician may provide you with referrals to services.

• Veterans Administration

A source of information and referral, resources for attendant care, nursing home, medical, and some geriatric psychiatry evaluations for veterans.

• Personal referrals

Ask people who have been through the caregiving experience for personal referrals to products and services.

 
 

Alternative Living Arrangements

 

Many people still labor under the false belief that when you get old, you have to go into a nursing home. This is no longer the case, if it ever was. Few people would choose to live in the hospital-like atmosphere of a nursing home if they had other options—and today there are more choices than ever.

 

Most people can remain at home (with home health aids). If they do require more assistance than can be practically provided at home, there are very excellent options available, including assisted living facilities, or continuing care retirement communities. Most seniors find they are very happy living out their lives at places like those.

 

Skilled Nursing Facilities (SNFs) are appropriate for those who need constant medical care (those services that must be performed by licensed nurses or doctors), those who need rehabilitative services (such as physical therapy), and those with significant deficits in activities of daily living (such as advanced Alzheimer’s disease). Skilled care needs can be short-term (IV antibiotics for an infection, wound care after major surgery, a speech therapist working with a patient who has had a stroke) or long-term (insulin injections, or ventilation treatment). Custodial care is provided at such facilities and include assistance with bathing, dressing, grooming, eating, getting in and out of bed or walking around, toileting (or incontinence care). Payment options for SNFs are: Medicare, Medicaid (MediCal in California), long-term care insurance, and private pay.

 

Here are some of the things to look for or ask yourself as you consider the living situation.

 

• What type of assistance does your loved one need?

• If they want to remain at home, can they receive the care they need there?

• Does your loved one want to move into an assisted living facility?

• Can your loved one’s condition be accommodated by making modifications in the current home environment?

• Would a senior apartment or condominium be an option based on their physical condition and financial ability to pay?

• Does your loved one need a skilled nursing facility (SNF)? 
 

The following are links to AgingPro’s descriptions of senior living arrangements. Similar facilities go by different names throughout the country. These will help you understand the choices available to you.

 

Independent Living / Senior Apartments / Senior Housing / Income-Qualified

   Housing  / Congregate Care
 

Continuing Care Retirement Communities (CCRCs) / Life Care Community

   Assisted Living

 

Board and Care / Residential Care Facility for the Elderly (RCFE ) / Adult Family  

   Homes (AFH)
 

Alzheimer’s / Dementia Care Facility

 

Skilled Nursing Facility (SNFs) / Convalescent Care Home / Long-Term Care Facility

 
 
Step 6: Paying for Care: Straight Answers to Financial Questions
 
How much does long-term care cost?
 

Costs of long-term care vary by service and geography. The average costs in the United States in 2006 are:

           

$176 a day for a semi-private room in a nursing home

$203 a day for a private room in a nursing home

$2,691 a month for an assisted living facility, one bedroom unit

$19 per hour for a home health aide

$17 per hour, (or about $200 per 24 hour shift) for homemaker services

$56 a day for Adult Day Health Care

 
Who Pays for Long-Term Care Services?
 

You! That is the short answer to dispel any myths. If you want maximum choices and control over you future, you will need to save and invest or have (generally very costly) long-term care insurance.

 

Currently, fifty percent of home care costs are being paid for privately by the care recipient or their families. The next biggest payer is Medicare, followed by other payers, such as Medicaid, Social Services Block Grant, Title III of the Older Americans Act, and the Veterans Administration. Currently, private long-term care insurance finances a small percentage of home care, but may expand as a funding source over the next two decades.

 
Personal resources

Personal resources, or family money, is typically how long term care is paid for. Saving and investing money for your long-term care needs is the best way to assure that you can choose where and how you receive your care for the rest of your life. Savings, stocks, bonds, investments, life insurance policies, pensions, income, checking and savings accounts are some examples of where people accumulate funds. Some investments may have a penalty for withdrawing money, so check with your financial advisor for details. Home Equity Lines of Credit (HELOC) or second mortgages are also options. Contact your certified financial advisor to find the method that will work best for you.

 

What about Medicare?

Medicare is essentially a form of health insurance. Most Americans misunderstand the relationship between health insurance and long-term care. Like private health insurance, Medicare DOES NOT pay for all of our needs as we age. Medicare does not pay for help with activities of daily living, such as eating, bathing, dressing at home or assisted living. Medicare also doesn’t pay for hearing aids, dental care or dentures, glasses, most prescription drugs (except if you buy Medicare Part D), routine foot care, or services outside the U.S. (with few exceptions). Custodial care is not included as a Medicare benefit, yet that is the most costly type of care we need as we age. This is very disappointing for those who think Medicare (or private health insurance for that matter) will be covering these expenses.

 

Generally, Medicare will pay for skilled nursing or home health care and skilled nursing and rehabilitation costs (up to 100 days), but only after a three-day (three midnights) stay at a hospital for “skilled” services, such as nursing or physical therapy. Home health care is sometimes covered by Medicare, and Medicare does cover intermittent nursing services, physical therapy, and medicine assistance. In most cases Medicare does pay 100% for hospice services from an approved agency for terminally ill people.

 

Medicare Part B / Supplemental helps pay for physician’s visits, rehabilitation services, outpatient hospital services, ambulance services, some medical supplies and services.

           

Some Medicare Advantage Plans offer limited skilled nursing facility and home care coverage if it is medically necessary. Caregiving, or companion care services include assistance with activities of daily living, house cleaner, cooking, and shopping. Medicare has rules for approving home health care, such as the patient must be homebound, must need periodic rehabilitative therapy, and the agency must be Medicare approved.

 
 
Medicaid

Medicaid (or MediCal in California) is for those with very limited income and assets, and acts as health insurance for hospitalizations, rehabilitation, medicine, limited custodial care and long-term nursing home care. The rules for counting your income and resources for eligibility vary from state to state and from group to group. Until recently, getting Medicaid assistance for long-term care meant a trip to a nursing home. 

 

In some states Medicaid has recently improved programs to pay for Adult Day Health Care programs, meals, and portions of in-home supportive services. Medicaid has also started partially covering assisted living and other costs in some states.

 

   The following are some of the things that are considered in determining whether   

   someone is eligible for Medicaid benefits in a nursing home:

 

• You can have no more than $2,000 in “countable” available assets (these have general federal guidelines, rules by state may vary somewhat). 

• The spouse of a nursing home resident (called the “community spouse”) is limited to one-half of the couple’s joint assets up to $101,640 (in 2007) in countable assets. 

• In addition, the community spouse may keep the first $20,328 (in 2007), even if it is more than half the couple’s assets.

 

As you can see, most people are not eligible for Medicaid because their assets and income are too high. Contact a Medicaid Planning specialist to discuss the latest laws and regulations, and how to best plan for your long-term care needs.

 
Long Term Care Insurance

Long Term Care Insurance can help pay for many types of long-term care, skilled and custodial (non-skilled) care, at home and assisted living or nursing home. This can be good protection against the high costs of long-term care services. However, this is not something to be purchasing for a senior when the need is already present.

 

Policies vary widely and rates vary by age, health, and coverage options. These policies can be expensive. In general, you must be in good health when you purchase the policy, so it may be a good idea to purchase when you are younger and the premiums are lower.

 

Polices are sold by private insurance companies, and it is very important that you purchase coverage from a reputable provider. Do your research to insure you get the coverage you will need in the future. Compare costs and coverage from different companies. Make sure you examine what benefits the policy covers. Ask about inflation riders and deductible periods. 

 

Employees can sometimes get group rates through an employer or membership in an organization. Some polices offer tax benefits, under as Tax-Qualified policies and, depending on your age, premiums might be used as a medical deduction on your Federal income tax form. Talk to your long term care insurance agent, certified financial advisor, or your State Insurance Department to find out what is best for you. You can also contact the National Association of Insurance Commissioners (NAIC) and request their publication, “a Shopper’s Guide to Long-Term Care Insurance.”

 
 
Supplemental Security Income (SSI)

Supplemental Security Income (SSI) is a monthly income for older adults with limited financial resources. Typically SSI and Medicaid eligibility have similar income and asset thresholds. SSI provides a monthly federal cash assistance of up to $623 (in 2007) to cover basic needs of food, shelter, and clothing. Some states increase this amount. For example, California increased the cash amount by $233 per month in 2007.

 

Some states have programs through which SSI will cover assisted living costs (at approved facilities), for a shared room. One of the requirements of SSI is that a person’s assets are below a certain level – around $2,000 for an individual and $3,000 for a couple. Income levels also must fall below a certain level, which varies by state and circumstance.

 
Home Equity Loan

A home equity loan (or line of credit) is a second mortgage that lets you turn home equity into cash, allowing you to spend it on home improvements, debt consolidation, caregiving, home modifications or other expenses. There are two types of home equity debt: home equity loans and home equity lines of credit, also known as HELOCs. Both are sometimes referred to as second mortgages, because they are secured by your property, just like the original, or primary, mortgage.

If your loved one owns a home that is worth more than they owe on it, they may be able to use their home as collateral to secure money. Home equity loans and lines of credit usually are repaid in a shorter period than first mortgages. Most commonly, mortgages are set up to be repaid over 30 years. Equity loans and lines of credit often have a repayment period of 15 years, although it might be as short as five and as long as 30 years. Research the fees involved, interest rates, and what the payment amount will be.

Reverse Mortgage  

Reverse Mortgages are a special type of loan that allows owners to convert a portion of the home equity into cash. With this loan, no payment is required until the borrower no longer uses the home as their primary residence.

 

There are very strict rules for this type of loan, so seniors don’t get taken advantage of. Rules generally include that the senior must be at least age 62 and they must own the home outright or have a low remaining mortgage balance that can be paid off at closing with proceeds from the loan. There are no income or medical requirements to qualify and the income from a reverse mortgage is tax-free.

           

With a reverse mortgage, the senior still owns their home. When they sell, move, or die, they or their estate will need to repay the loan supplied by the reverse mortgage, and any remaining equity then belongs to the senior or their heirs. 

 

Costs for this loan can be high, so if the senior will be living in the house for only a short time, sale of the home rather than reverse mortgage may be a better option. There are formulas to figure out how much money a senior may qualify for with a reverse mortgage.

 

There are three types of reverse mortgages:

·         Home Equity Conversion Mortgage (HECM) – This program is offered by the Department of Housing and Urban Development (HUD) and is insured by the FHA. HECMs are the most popular reverse mortgages, representing about 90 percent of the market.

·         Fannie Mae Home Keeper Loan – Borrowers may receive more cash from these loans than with a HECM since the loan limit for these loans is higher.

·         Financial Freedom Cash Account Loans – These loans are designed for seniors who own expensive homes.

Reverse mortgages are not for everyone, and it is very important to consult a professional mortgage lender before making this choice. Search the AgingPro directory for Reverse Mortgage specialists or visit www.aarp.org for more information.

 
Veterans Benefits

The Veterans Administration has two disability programs available to veterans and their spouses or widows. Disability compensation is available to those veterans who have service-related disabilities. The amount of compensation relates to the level of the disability. The disability pension is available to any veteran who served in a time of war and has a disability (the disability does not have to be service related).

 

Some veterans or surviving spouses are eligible for veterans pensions, if you meet the following guidelines and your income is limited to between $11,000 and $17,000 annually (depending on marital status and number of children).

• You must have been honorably discharged.

• If you enlisted before September 7, 1980, you must have served 90 days or more of active duty with at least one day during a period of war. Anyone who enlisted after September 7, 1980, must serve at least 24 months or the full period for which that person was called to serve.

• You must be permanently and totally disabled, or age 65 or older. You will need a letter from your doctor to prove that you are disabled.

There is also an Aid and Attendance program for veterans who are in need of an attendant on a regular basis. This is in addition to the disability pension. Aid and Attendance helps pay for in-home caregiving or assisted living costs.

 

You can apply for both disability benefits by filling out VA Form 21-526, Veteran's Application for Compensation Or Pension. If obtainable, attach copies of dependency records (marriage & children's birth certificates) and current medical proof  (doctor & hospital reports). You can apply online at http://vabenefits.vba.va.gov/vonapp.

 

TriCare for Life is a VA benefit that is similar to Medigap (or supplemental insurance) with no premium, for those who have purchased Medicare Part B. Some VA facilities also have nursing homes, though they often have waiting lists.

 

Visit the Department of Veterans Affairs (www.va.gov ), call the VA at 877-222-8387, or visit your nearest VA medical center to obtain more information about what services are available in your area.

 
Life Settlement

Life Settlement is another option to pay for long term care. In a Life Settlement, the qualifying senior sells their life insurance for a determined market value of the policy. Life Settlements have age and health restrictions. 

 

This option can be attractive when the reason for the life insurance policy (to financially support someone upon your death) no longer exists (such as divorce or the death of beneficiary). Proceeds from Life Settlements are taxable so you will want to consult the IRS or your financial advisor before seriously considering this option.

 
Viatical Settlements

Viatical Settlements are similar to Life Settlements and can be an option for those who are terminally ill or chronically ill. In this type of transaction the ailing senior sells their life insurance to a third party, usually for a lower amount than the full face value but an amount higher than the policy’s surrender value. The amount paid depends on remaining life expectancy of the insured (which usually can’t be any longer than 5 years). Typical benefits are from 50-80 percent of face value. 

 

This option may be tax-free, but consult the IRS, your state’s Department of insurance, or your certified financial advisor for more information.

 
Annuities and Trusts

Annuities and Trusts can also sometimes be used to pay for long-term care.

 

An annuity is a contract between you and an insurance company, under which you make a lump-sum payment or series of payments. In return, the insurer agrees to make periodic payments to you beginning immediately or at some future date. Annuities typically offer tax-deferred growth of earnings and may include a death benefit that will pay your beneficiary a guaranteed minimum amount, such as your total purchase payments.

A trust is when a person (the trustor) transfers something of value (the asset) to another person (the trustee). Once that takes place, the trustee manages and controls the asset for the benefit of the trustor or for a named beneficiary.

A trust can provide flexible control of assets for the benefit of minor children, or for the benefit of an elderly or disabled person, including yourself or your spouse. Two types of trusts can be used to pay for long term care:

• Charitable Remainder Trusts

• Medicaid Disability Trusts

Charitable Remainder Trusts allow you to use your own assets for long-term care with the added benefit of reducing taxes. This type of trust is typically used by wealthy people with specific types of assets that they donate to a public charity at fair market value. The individual making the donation receives a tax deduction on the amount that has been gifted. The donor then receives payments from the trust that can be used to pay for long-term care. Once the donor dies, the balance of the funds in the trust go to the charity.

The purpose of a Medicaid Disability Trust (sometimes called a Special Needs Trust) is to enhance the quality of life of an individual with a disability who also qualifies for public benefits. Medicaid Disability Trusts are limited to disabled persons under age 65. With this type of trust, assets are managed by a non-profit organization. The trust may be established by a parent, grandparent or legal guardian for the benefit of the disabled person. This is the only kind of trust that is exempt from rules regarding trusts and Medicaid eligibility. These trusts are complex. Consult a tax professional for details.

Because of the technical aspects of all these approaches, we suggest you consult AgingPro’s directory for a certified financial advisor who can provide further information.

 
State-funded community-based programs

State-funded programs and services help people live independently. Available services vary by location. Learning about the “formal system” of care (companies and agencies) will take some effort if you are doing this without a Professional Geriatric Care Manager. AgingPro is dedicated to helping you make sense of this potentially confusing field. The AgingPro directory is filled with listings of services and products to assist you. You can also explore www.eldercare.gov or call 800-677-1116, or your local Area Agency on Aging office to find out what services are offered in your community.

 

When researching these options, will want to find out:

• What services do they provide?

• What are the eligibility requirements (geographical, age, financial need)?

• What are the fees or costs for the service involved?

• Are their services covered by insurance/Medicare/Medicaid?

• How quickly are services available? Is there a waiting list?

• What documents or other paperwork do you need in order to apply for services?

 
Is Your Loved One Financially Self-Sufficient?
 

The information below will assist you not only in gaining awareness of how financially self-sufficient your loved one is, but also in determining eligibility for government benefits.  

 
Start by writing down all their monthly/annual bills:
• Rent or mortgage payment
• Property tax

• Utilities: Phone, gas, electric, water

• Other household expenses (like housekeeper, etc.)

• Food
• Clothing

• Transportation (car, bus, taxi, tolls, parking)

• Medical costs (prescriptions, glasses, etc.)

• Medical supplies
• Insurance premiums

• Monthly loan or credit card payments

• Income taxes
• Legal and accounting fees
• Other monthly expenses 
 
Then list regular income:
• Social Security
• Pension
• Annuities
• Investment income
• Other income:
 

Once these are totaled, subtract the monthly expenses from the income. If the cash flow is low or negative, you can try these options:

 

• Make sure your loved one is getting the income they deserve. Are they receiving their social security and/or pension? Do they qualify for any government assistance programs [Social Security retirement disability, survivor, Supplemental Security Income (SSI), Veterans disability benefits]. To check eligibility for any government benefits, go to www.benefitscheckup.org.

• Ask the utility companies (phone, electric, gas) about assistance programs.

• Prioritize bills and pay the most important ones first, i.e., food, shelter, medication.

• People with limited incomes may qualify for assistance with the cost of prescription medications. Medicare offers a Part D “Extra Help” program. Pharmaceutical companies have patient assistance programs – contact the maker of the medication your loved one takes to see if they qualify. Your physician may also have information about these programs. There are also non-profit agencies that pay medication costs for people in need. These are usually disease-specific. Check with the association that deals with your loved one’s disease (ex: the multiple myeloma association).

• Contact your local Area Agency on Aging (AAA) (www.eldercare.gov) to inquire about their family caregiver assistance programs or state funded community programs.

• Contact disease-specific organizations for potential support.

• Contact debt consolidation services or debt counselors for solving financial or money management problems.

 
 

Step 7: Avoiding Caregiver Burnout

 

Here is a scenario that is common for those who take on family caregiving. If you are already involved in this, it may sound familiar: You started caregiving with enthusiasm and vitality. You were happy to help and received personal rewards from making a difference in your loved one’s life. As time went on, however, you became exhausted and you now realize that caregiving is taking time away from the important things you used to do. Still, your loved one continues to need your assistance—maybe even more than when you started. Your energy is not as great as your loved one’s apparent needs.

 

If this has occurred for you, then you may be in, or approaching, Caregiver Burnout.

 

Symptoms of Caregiver Burnout

 

Answering the following questions can help you objectively identify if/how you are experiencing caregiver burnout or stress. Knowing this, you can then explore the many options for remedies.

 

• Have your sleep patterns changed? Do you have trouble falling asleep or staying asleep, or, conversely, are you sleeping much of the day?

• Does your energy feel depleted most of the time (physically or mentally) no matter how much sleep you get?

• Are you more easily irritated or angered than usual?

• Have your eating habits changed? Have you experienced weight gain or loss?

• Do you have headaches, stomachaches, digestive problems, or other physical ailments such as aches or pains?

• Have you lost interest in hobbies or activities that used to bring you pleasure, or social isolation?

• Do you have difficulty focusing, remembering, or making decisions?

• Do you feel hopeless about the future?

• Do you have thoughts of death or suicide?

• Has your sex drive decreased?

• Do you have recurrent episodes of crying?

• Do you have feelings of anxiety, depression, grief, frustration, or guilt?

• Are you misusing or abusing sleeping pills, alcohol, or other drugs?

• Has your personal grooming declined?

• Have you neglected your own health and self-care?

• Do you have a new chronic health condition (an ulcer, high blood pressure)?

 

Answering “yes” to one or more of these could indicate caregiver stress or burnout. The more affirmative responses, the greater likelihood you are suffering from stress. Everyone experiences some of these symptoms occasionally. But, if you find yourself with these symptoms for more than two weeks, they have gotten intense, or they prevent you from leading a typical life, see a medical professional for support.

 

It is vitally important that you do not ignore these signs of stress. Significant health consequences could follow from ignoring these signs. The good news is that there is clear and effective treatment for this. Consult a professional counselor or physician to get the proper care for yourself. Remember, you must take care of yourself before you can help take care of others.

 

Stress Relievers - Caring for the caregiver:

 

Here are some steps you can take to get yourself back into balance and continue from a more healthy state.

 

• Remember the positive emotional benefits of caregiving: a sense of purpose, making a difference in someone’s life, feeling useful and valuable. Give yourself credit for what you are doing.

• Keep your eye on the big picture and what is ultimately important.

• Prioritize your to-do list to assure you get the most important items done first, and create a routine.

• Accept your limitations, and those of your loved one.

• Ask for help. Share the load – be willing to accept help from others (professional or friends).

• Research community caregiver resources by looking at:

- Area Agency on Aging

- State Agency on Aging www.nasua.org/SUAMembers.cfm#tx

• Look into respite care, such as: adult day care, hiring a non-medical caregiver from an agency, or short term stays at a nursing home or assisted living facility.

• Make a priority of doing the things you know to do to better take care of yourself.

• Take time to relax, move physically, and have fun.

• Get plenty of rest, take a long, relaxing bath, go to the spa.

• Eat a healthy diet – protein, fruits, vegetables, whole grains, and low fat. Cut down on sugar, flour, and alcohol.

• Find a way to take a break when necessary—and be aware of when it’s necessary.

• Consider taking some time off work.

• Visit your doctor regularly and ask about taking a multi-vitamin or other preventive measures.

• Talk to your doctor about any depressive feelings or physical ailments you are experiencing.

• Seek professional help, such as counseling, if needed.

• Use relaxation techniques, such as meditation, contemplation. Consider prayer if you are so inclined.

• Participate in faith-based support if you have it.

• Avoid isolation. The social support offered by staying connected with family and friends can decrease stress.

• Join a support group, either in your community or online (AgingPro discussion boards are excellent tools).

• Understand your loved one’s health conditions so you know what to expect.

• Educate yourself about the disease or the situation in which you find yourself. Contact disease-specific organizations to get up-to-date accurate information.

• Make an appointment for yourself with a health professional who understands the disease, make a list of questions, and make sure your questions are answered before you leave.

• Consult other professionals or specialists to gain information if needed.

• Accept changes when they come up.

• Set realistic goals—for yourself and your loved one.

• Do financial and legal planning.

• Don’t sweat the small stuff.

• LAUGH – find ways to nurture and promote your sense of humor.

 

The Family and Medical Leave Act of 1993 requires employers to provide (for eligible employees) up to 12 weeks of unpaid leave during a 12-month period to care for an immediate family member with a serious health condition. To find out more about the program, go to the Department of Labor’s website: http://www.dol.gov/esa/whd/fmla. Some states, including California, have laws that provide for partial pay for some employees during their leave.

 
 

Step 8: Preparing for the Ultimate

 

No matter our beliefs, hopes, or desires, sooner or later everyone is going to die. It is a good idea to talk to your loved ones about this so you can discuss their wishes around end-of-life decisions.

           

• Do you want life sustaining treatment, like ventilation or resuscitation?

• Do you prefer to spend you final days and moments at home?

• Do you want others around you? Is there anyone you particularly want present?

• Is there a particular environment you would like as the time approaches? Music? Silence? Family? Friend?

• Do you want to be cremated or buried?

 

It’s wise for everyone to have an advance directive for health care in place so family and caregivers know what medical treatment the person receiving care wants if they can no longer speak for her or himself. This is best done sooner than later once care starts.

           

Most Americans want to live out their lives at home, though not all are fortunate enough to have their wishes met. However, with hospice services today, it is possible to live out our days in the comfort and familiar surroundings of our own home. Medicare even pays for all, or almost all, hospice expenses depending on what agency you chose. This does NOT mean round the clock care: this refers to medical treatment, regular visits by a hospice nurse case manager, social worker, home health aid, chaplain (if requested), and volunteers, and most, if not all, medical support equipment. 

 

Exactly What Is Hospice?

Hospice is a program of care for patients who are facing end of life illness and their families. Usually a patient is considered eligible for hospice when their prognosis is that treatment has ceased to be effective and they have 6 months or less to live.

 

Hospice is a philosophy of care, not a specific place of care. Hospice provides palliative care focusing on quality, not quantity, of life and comfort not curative treatment. Hospice providers are experts at keeping people comfortable, educating patients and loved ones what the end of life is all about, affirming life, processing grieving, providing supportive services, improving quality of life, and more. 

 

These services address the physical, emotional, spiritual (if requested), and social needs of the dying process. Almost anyone who uses hospice services for a loved one becomes an instant advocate. There is no longer any need to suffer in the dying process. Medical care is available for almost all symptoms of discomfort associated with the end of life process.

 

Often hospice isn’t started soon enough. Sometimes the doctor, the patient, or family member will resist hospice care, believing that it sends a message of “no hope” or that it is a “give-up program.” This is not true. If the condition gets better or goes into remission, you can be discharged from hospice and return to active treatment. Hospice offers the hope of increased quality of life, compassion, support and expert symptom treatment during the advanced stage of an illness. You, your family, and the doctor together decide when, or if, hospice is to begin. 

 

If you have questions, talk to someone who has had hospice care for a family or friend for their first-hand experience. It truly is a remarkable service during one of life’s most challenging times.

 
 

Additional Resources Available to Assist You

 

There are many websites, government and private agencies that are poised to assist you in your caregiving. Some provide free services while others have a basic flat charge or are fee-based. The AgingPro Resource Link List will guide you to many other valuable services aimed at assisting you through every step of your journey.

 
 
References

The following are some of the information sources we used in preparing this guide for you.

 

Caring Today/CVS/pharmacy Family Caregiver Insights Study: Well-Being and Care Management, 2007. www.caringtoday.com

 

Evercare/National Alliance for Caregiving, 2007.  What They Spend, What They Sacrifice. www.EvercareHealthPlans.com

 

U.S. Department of Health and Human Services, Informal Caregiving

 

Langa K.M., M. Chernew, M. Kabeto, A.R. Herzog, M.B. Ofstedal, R. Willis, R. Wallace, L. Mucha, W. Straus, AM. Fendrick. 2001. National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia. Journal of General Internal Medicine 16: 770-778.

 

National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.

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