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Caregiver School

Author: Pat Thorne

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A Training Program for the Family Caregiver
Go to the episode webpage to download the lesson worksheet
26 Episodes
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Are you one of the 40 million? ~ That is the estimated number of unpaid family caregivers in the United States today. And as our population ages and life spans are longer more of us will be finding ourselves caring either for an elderly parent or an aging spouse at some time. Family caregivers are usually unpaid and certainly not trained professionals. Most new family caregivers greatly underestimate the enormity of the task ahead. Many feel like they are “flying by the seat of their pants” having to make quick decisions with long-term consequences. Caregiver School is a training program designed to provide the needed information and education to help you be a more effective and less stress family caregiver. This nine-part program covers a variety of topics that will help you provide the best care for your loved one and yourself. Download and print the Course Outline to see that I will cover a lot of really basic yet important information that you will need to help you be a more effective and hopefully a little less stressed family caregiver.  This audio series is for information and educational purposes only. I do not provide any legal, medical or financial advice. My goal is to provide you with general information, so that you can seek out professional assistance from the appropriate subject matter expert.
Not all family caregivers are the same nor are they struggling with the same issues at the same time. Each of you is on a unique journey with your particular loved one and their individual needs and concerns. Some of you are more active in your loved one's care, while others have a much smaller role. Your unique circumstances can make a big difference in the amount of time or skill you will need to provide the best care. It is important to understand the different path that your caregiving journey might take so you can be prepared for the challenges ahead. Depending on the reason for the caregiving journey some of you might need to do more work and preparation upfront while other have more time to plan and prepare.   This audio series is for information and educational purposes only. I do not provide any legal, medical or financial advice. My goal is to provide you with general information, so that you can seek out professional assistance from the appropriate subject matter expert.
Many families find themselves well into the role of caregiver before they realize what has happened. Whether suddenly at a hospital bedside or slowly over time, families quickly realize just how difficult caring for someone can be at times. They search for information and answers to help make better choices and feel more in control. In my work with families, I've found that many just want to be told what to do next. When they had a plan or a set of instructions to follow they were better able to manage the day-to-day tasks of care giving. So in this lesson I will outline the six essential steps, which may help bring some order to the potential chaos of caregiving. I'll go through each of these steps in more detail in future lessons
For some the beginning of their journey as a family caregiver is obvious. A sudden heart attack, stroke, accident or injury requires a family member to step up and take charge. So what do you do if you are suddenly thrust into the role of family caregiver? When faced with a situation that requires a more immediate response and more definitive action plan. Priorities change, planning becomes a more urgent need and the learning curve is steeper and more critical.   So here is a Practical Plan of Action that you can use to prepare for the journey ahead. Print out the accompanying worksheet to follow along.
WHEN do you become a family caregiver? You are struggling with knowing when you need to step in and help and when you need to leave well enough alone.  When we care for our loved one we want our help to be received with a "thank you so much, I don't know what I would do without you!" and not "mind you own business, I can take care of myself". Knowing where this line is can be very tricky to navigate successfully and has lead to many family conflicts.   In part 2 of caregiver school you will learn how to assess your loved ones abilities and disabilities so that you will have a clearer understanding of when and how you might step in and help. Lesson 1 Understanding Normal Aging In this lesson you'll learn about how normal aging affects our loved ones ability to function independently and the difference between disability as a result of normal aging and that caused by the more serious disease process of dementia.
In this lesson we continue our discussion of normal aging and focusing on how it affects our brain function and its emotional toll. I will also cover how to tell when some changes might be a sign of something more serious. With normal aging our brains and cognitive or thinking skills will slow down, become inefficient but disease or disorders of the brain will destroy or impair these skills which is VERY different. An aging brain will have you forget where you left your keys a diseased brain will have you believe someone moved or took them. In the early stages of the disease process this difference can be quite subtle and difficult to distinguish. But as the disease progresses it will become too obvious to ignore.
Are you wondering if your elderly loved should drive? When is it time to stop someone from driving or should you intervene at all? As a family caregiver you might be the one who has to make this very difficult decision. So how do you know? Is there an age when someone is too old to drive? Maybe, but age alone is not the biggest risk factor in one’s ability to drive. As you think about limiting or eliminating your loved one’s ability to drive remember that you are not just taking away keys and assuring their personal safety you are also limiting their autonomy and independence as well as yours. Who will have to start driving them when they stop? Making this decision for someone else has the potential to create a significant amount of conflict and should be done so cautiously and only as a last resort. It is a difficult decision that is best handled as compassionately as possible.
Family caregivers struggle with knowing when to step in and help and when to leave well enough alone. But how do you know what to do and when? Maybe your 80-year-old mother is fine living alone right now with just some occasional assistance. But what additional help could she use now and what do you anticipate her needing in the future? Are there simple modifications that can be done today to avoid an injury or accident and is she able to recognize these as a need. What plan does she already have in place to help meet her changing needs and abilities? Are they realistic? What are the options available? How will you know when to make a change? Having the answers to these questions ahead of time will help you be prepared to respond to the inevitable changes. A "needs assessment" is the term professional caregivers use to determine what help is required in order to determine the services to be provided. From this assessment a plan of care is created.
So as we continue on the caregiver's journey we have already covered some essential first steps, hopefully by now you have a better understanding of your current role and the path your caregiving journey might take. Now armed with all of this knowledge and information it is time to figure out what to do next. Now is the time to make a plan or rather a series of plans. Many experts who work with caregivers will at this stage strongly advice you to hold a family meeting. This is where you with your loved one and all of the family involved in their care get together and discuss their needs, express concerns and formulate a plan. Sounds great right? And for many families this approach is all that is advertised itself to be, a helpful gathering of open communication and harmonious agreement.  But suppose your family doesn't work this way? Suppose your family has trouble gathering around the Thanksgiving table without tension or arguments? Maybe you and most of your family can do this but suppose the subject of this meeting - your loved one, is cantankerous and stubbornly refusing to see any problems, or worse has the early stages of dementia and is not even aware any of the issues or concerns. So my advice is to NOT have a family meeting! Do this instead...
In the previous lesson we discussed the importance of having a family meeting or at least conversations. In theory talking to your loved one and your family about their care needs, who will do what, when and how, should be easy - in theory. But the reality is - that having open and honest conversations about the difficult subject of someone increasing disability or incapacitation really only happens in Hallmark movies. But most of us don't live in Hallmark movies and reality is a lot more complicated. Families are a blend of personalities, idiosyncrasies and with shared history both good and bad. And all operate at some level of dysfunction. But regardless of where your family falls on the dysfunction scale, when dealing with human beings and human emotions you can expect to have some conflict. But you can learn to anticipate and therefore avoid or navigate around some of the more common reasons for conflict
Since this part of caregiver school is about holding a family meeting and creating an effective care plan, I would be remiss to not discuss some of the pitfalls of poor communication. Many families have the best intentions in communicating but never learned how to do so effectively. They think they are trying to start a conversation and soon realize they have started a confrontation. Effective communication is a skill that can be learned. So as a family caregiver initiating these family discussions and treading into the murky waters of conflicting goals, expectations, challenging ought to and should's you will need to be armed with some strong communication skills to accomplish your task. Now this is a huge topic and the subject and many books so for our purposes I will keep my focus narrow and as it relates to family caregiving. So begin by identifying five (5) the roadblocks to effective communication that you will probably encounter from your loved one
A plan of care is just what the title implies a plan of how to provide the needed care to an individual. Professional caregivers are required to create this written document, which details the client's strengths weakness, abilities, disabilities, level of independence and areas of need. It covers every aspect of the client's physical, mental and emotional status. It then identifies areas of need, establishes a plan of how to meet those needs and who will provide the care or service.   Family caregivers would benefit from creating their own plan of care. It does not need to be formal or even written. But it should be discussed and agreed upon. Putting things in writing would benefit those family caregivers who might need to hold others accountable and to clearly establish areas of responsibilities but it does not need to be in any particular document or form. An informal email summarizing a phone call or family discussion can help to clarify everyone's role and responsibility as well as communicate needed updates and changes.
Many caregiving journeys begin with a diagnosis of some kind. You or your loved one begins to notice changes or an increase of symptoms that are a cause of concern. For some it is obvious that something is wrong but for others they may be wondering whether this just old age or something else. Trying to decide if this something to just live with or is it a problem that can be fixed. What usually follows is a trip to the doctor to find some answers and the journey into the medical world begins. One filled with doctor's appointments, referrals to specialists, tests, follow up appointments, medication, side effects, new medication and more appointments. Not to mention unpronounceable medical jargon, endless and duplicative paperwork, out of pocket deductibles, co payments and constant worry about if it any of this is "covered" by insurance. So I thought it would be helpful if I gave you some guidance on how to navigate the often complex and usually frustrating medical world.
The most common solution to a physical problem is a medication. This can be as simple as an over the counter medication purchased in any drug store or complicated prescription and set of instructions to be followed. Most people can manage their medications on their own for a long time with little or no problems. Over time they develop a system of organizing and taking their medications. And since most start out with just one or two and add more over time they usually just adapt and are unaware of just how complicated their medication regime has become. They usually rely on memory of what the doctor told them and the instructions on the prescription bottle. But when our loved one starts to get a bit confused managing their medications is sometimes one of the first areas out loved one could use some help. But stepping into this new responsibility can be quite a challenge, a source of frustration as well as worry.
If you have been helping your loved one through the medical maze then you probably already have some understanding of the world of medical insurance. Terms like co-pays deductibles, out of pocket, out of network, HIPPA, informed consent and will all become a second language to you the longer you are a caregiver. The focus of this lesson is undestanding when medical insurance will pay for the cost of care.
It’s time to get your affairs in order” the words we dread hearing. It signals that the end is near and that there is nothing more that can be done. But the reality is that we need to have put our “affairs in order” long before tragedy strikes. In this lesson I'll cover the general topic of advanced directives, what issues they address, why they're needed and when they need to be prepared.
Being a family caregiver involves juggling a lot of different roles and taking on many new responsibilities. I always encourage families to divide these responsibilities among all of them so that the burden doesn't overwhelm just one person. But whether these responsibilities are taken on by one person or shared by a few think of managing your loved one's affairs as three unique areas of responsibility one of medical agent, another as financial power of attorney and as third as Executor of the estate. Each of these roles will require a written document or advanced directive to authorize you to manage these responsibilities. In this lesson we'll go over the role of the medical and financial power of attorney and I'll cover the role of the executor in the next lesson.
Do I need a Lawyer is a question everyone asks when talking about advanced directives. "It depends" was the answer the attorney gave to a caregiver at the elder law seminar I attended. A very frustrating and unhelpful response but actually it is the right one. But what does "it" depend on? Well everyone's circumstances are different and laws vary widely from state to state, so a lot depends on who you are and where you live. But I thought I would take some time to help walk you through a better understanding of the "it depends" answer. Now I am just giving you some general information and I am not providing any legal, financial or medical advice.
Helping your loved one manage their day to day activities is different for every caregiver. It varies because some caregivers live with the one they are caring for, some live near by and others live far away. And as you learned in the first part of caregiver school their are different caregiving journeys, some of you are caring for someone is just getting older, others their loved one has a disease or physical disability and some of you are caring for someone who is physically healthy but struggling with dementia. So the day to day challenges for each of these journeys can be very different. Part Six of Caregiver School covers what you need to know to care for your loved one's day to day needs. We'll discuss some of the options available to you whether you are caring for your loved one in their own home, in your home or in a professional care facility. In this lesson we will focus on the challenges, services and options available for caring for someone at home.  
So what do you do when your loved one needs more care then you have time or skill to provide? As your loved one moves from independence to increasing dependence it is the caregivers task to adapt the environment to meet those changing needs. But at some point a family caregiver will need to rely the expertise of a professional caregiver. Whether these professionals provide this care in the home or in a facility the services they provide are an invaluable resource for the family caregiver.
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