Caregiver School

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.

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.

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.

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.

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.

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

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

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...

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.

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.