Starting Out as a Caregiver
Starting out as a caregiver can make your head spin at first. You may even feel overwhelmed but take a deep breath and let me help you get organized. I’ve been a caregiver for more than thirty years and have some great tips to assist you in getting your feet wet and starting on your journey.
How you became a caregiver often influences how your future path progresses in caregiving. It certainly influences the type of supplies and resources you need and the skillset you must acquire. However, it also influences how quickly you adapt to your role and your emotional adjustment to the changes in your life.
Becoming a caregiver slowing through a progressive illness allows time to adjust to the idea in advance. In contrast, a sudden accident with devastating life changes requires tremendous changes to caregiving requirements and everything about your life—that’s a lot more change. How you adapt and set priorities requires different skills, greater focus, different timelines, and resources. There are similarities in what is needed but the “how” changes significantly. Therefore, I try to talk about the process of what you do rather than specifics so you can adapt to any situation.
In a crisis or whenever emotions run high, communication suffers. People don’t listen with their ears; they listen with emotions, and those emotions are raw. Therefore, before any conversation about providing care with another party who has a stake in the caregiving outcome, remember that the other party intends to stand up for what they believe is the best course of action based on their history and experience, just like what you intend to do. In most cases, all parties think they know best and have the best intentions, but their communication methods may be disgraceful. Therefore, it’s essential to set up expectations about boundaries and authority and make some essential decisions as soon as possible before territorial wars, and hard feelings get out of control.
First Things First – Crisis Caregiving
The priority in crisis caregiving centers around decision-making authority for medical care. If the one needing care is of legal age and mentally and physically competent, they make all their treatment decisions with or without input from others per their choice. They call the shots and make caregiving decisions in consultation with them.
However, if they are not competent, someone must be in control of the decision on their behalf.
- If a previously executed medical power-of-attorney or medical decision-maker document exists, implementation of the directives stated begins immediately. Without a legal document establishing authority, the state’s legal authority guidelines determine who makes the decisions.
- Initially, while in the hospital, a case manager from the hospital assists you in obtaining the resources needed. Most hospitals have a care coordination department that helps families connect with social services, medical equipment, and other external services needed to get home following a serious health crisis. Feel free to use their assistance because that is what they are there to do. Once you are home, you are alone so take advantage of them while they are there.
Progressive Illness Caregiving
With progressive illness caregiving, a medical condition becomes worse over time. The time frame for the progression may be short or long, but no “point-in-time” occurrence sparks an event leading to a change of status from well to not well. For example, after my husband’s diagnosis of multiple sclerosis in 2006, his medical condition progressed from independent living to needing complete care assistance. With each change in his medical condition, I reassessed his needs and adapted accordingly. However, what is different for me from someone who must deal with a crisis is that I can plan for what I see coming most of the time. Therefore, I have time to prepare myself for the change.
Let’s consider a situation where “Mom” had a stroke and suddenly needs care. Mom has memory loss with right-sided paralysis now. Three siblings exist who all think they know best what Mom needs. Mom left an Advanced Directive that says all three children could serve and have power of attorney over her estate, but all three must agree on all major decisions. This situation could be a nightmare if the three can’t get along.
How Do You Decide Who Makes the Final Decision?
Someone must be in charge. Perhaps everyone can decide what to do with Mom, but someone must make a final decision, and the healthcare team must know who has that authority. Healthcare workers could waste critical time waiting while the three POAs decide on Mom’s care without a pre-determined decision-maker. Meanwhile, someone must try to locate the little sister (the missing POA) who left on vacation to Aruba without leaving a contact number.
Once a situation arises that Mom can no longer care for herself, the siblings need to meet to hash out who will have veto authority. If bad history exists among the siblings, or even if that is not the case, I recommend inviting a third party to help facilitate the meeting to help prevent it from taking too many detours. This type of meeting is full of sensitive topics and memories, making it easy to walk down memory lane. If you allow that to happen, it could take you weeks to finish the process.
One approach to conducting the meeting is to start with a less sensitive topic and work your way into the major decision. If all three want to have the same “job” and the role comes with many responsibilities, try talking about how the other two will support the selected sibling first; what better way to get a commitment from all three siblings to help the one who ends up caring for Mom than to get that commitment in advance! Therefore, work out the details before selecting where Mom goes. Here’s what I mean
Before deciding where Mom will live, decide the following:
- How much each of the other siblings will pay to assist with the cost of Mom’s care (medical supplies, food, clothing, treatments, travel expenses, caregiver help, etc.) because the sibling housing her should not carry the full burden.
- How much time will the others contribute to providing relief care? Will they stay overnight and for several days or just a few hours?
- Can the housing sibling hire help and get assistance with the cost?
- If changes are needed to the house to make it accessible, will the others help with the remodeling?
- What do the siblings expect regarding communication updates related to Mom’s health status?
- How will holidays be handled?
- What if it becomes too much?
After discussing all the above and making decisions about these questions, deciding where Mom will go should be easier for everyone. However, suppose you have difficulty having this type of conversation without much emotion getting in the way? In that case, I recommend seeking the assistance of a family counselor or other impartial third party willing to help you calmly work through this process.
Once making all the decisions, write them down and get everyone to sign them. We all tend to forget them once we’re ten feet away from the table. I recommend writing out the final decisions together. Have one of you be the scribe while the others come up with the wording. All agree on the words, then one of you takes the document and pretty it up, sends it to everyone else, and gets the signatures. Then, send everyone a final copy with signatures to everyone—full transparency. Doing it this way prevents anyone from saying, “I don’t remember,” “I didn’t agree,” “we didn’t discuss that,” “if I had known,” etc. It’s your safety net. Furthermore, it proves to Medicare where you are spending your money if a lot of your money suddenly starts leaving here to pay bills. Finally, it serves as proof that you did not violate Medicare.
Decision Made – You’re the New Caregiver
Since you are reading this article, the chances are that you were the one selected to be the caregiver. You now have full responsibility for care, total decision-making responsibility, manage the financial flow, keep up with appointments, monitor care, order supplies, and try to sleep somewhere in there before you take care of the rest of the family and maybe work a full or part-time job, too. Right? God bless ya, you will survive, but you must learn to take life one day at a time, no, sometimes one minute at a time. Furthermore, learn to let much of life roll off your back and cut yourself a lot of slack. So, let’s get started.
Getting Started with Basics
After the family meeting, you know what duties are left for you to manage. Now, it’s time to figure out which duties are essential and which are not. If you are both the caregiver and head-of-house, you may not be able to give up much. However, there may be a few non-essential tasks that you can set aside.
Essential or Non-Essential
Try sorting your list as follows, using these labels and definitions to make decisions:
Critical – Must be done (Essential) – i.e., something bad would happen if this were not done, such as someone would get hurt, sick, or there might be legal or financial consequences.
Necessary – Must be done (Essential) – i.e., required tasks indispensable to someone’s well-being or the care of the home. There may be some flexibility in the timing or method of completion, but someone must do them at some point.
Supportive – Not essential but should complete at some point. These items are maintenance items with longer timelines and provide greater flexibility in completion dates. (Should be added to the list at some point but not during times of crisis.)
Can do without – If truth be told, you can live without these. Nothing and no one will die, get sick, break down, lose its mind, or otherwise result in a negative consequence you can’t handle if you do away with these things. Therefore, these tasks you either eliminate or put far, far to the bottom of your list.
Also, as you decide under which list a task belongs, ask yourself some of the following questions.
- What would happen if I didn’t do this task?
- Is there anyone else who could do this for me?
- Could I afford to pay someone else to do this for me?
- Can this be combined with something else to make the two things easier together?
- Do I have to do the task as often as I was doing it, the way I was doing it? Is there a better way?
After you go through all these questions, you have a good idea of what you need to do; therefore, you now have a task list. With a task list, you can create a care agreement.
Other Types of Decisions You Might Need to Make
Expectations About Living Arrangements and Overall Management
Suppose “Mom” wasn’t coming to leave with you, but you were going to live with Aunt Jane to be her caregiver? The same situation exists—Aunt Jane had a stroke. She has three children, and all three are her POAs, but none want to take care of her. You are a nurse, and they asked if you might be willing to come to take care of her? Before making up your mind about saying yes or no, you might want to find answers to the following questions.
- What is the level of care required? i.e., Do they need limited, partial, or total care? Or just companion assistance?
- Does the role include managing the home as well as providing care? For example, who is responsible for paying the bills, taking care of business transactions, managing house maintenance, vehicle maintenance, etc.?
- If you are responsible for bill payments, will you also be named a Durable Power of Attorney, or will you have to have a family member pay all the bills?
- Will you have any Medical Decision Making Authority? Are you the only one, or is it shared?
- How much time do they expect you to be physically present with them? Are you on 24-hour call? How much freedom do you have?
- Will you have a private room with a locked door if you live with them?
- Will you receive payment, and if so, how much? As a domestic worker, you should receive pay for all hours worked. That means any hours over 40 in a workweek require overtime pay. However, hiring more than one caregiver would help reduce the risk of paying overtime. Furthermore, if Aunt Jane needs the skilled care of a registered nurse, they would only need to pay you a salary since professional positions are exempt from overtime pay. In either case, families who hire their caregivers to provide care to family members become employers and must get federal ID numbers, hire the caregiver as an employee and withhold taxes from their pay.
- When you are there, are you free to use their phones, eat their food, and use their supplies, or must you have your own?
- Can you have friends visit? Do you get time off?
- Do any other family members have concerns about your role(s)?
- What hours do they expect you to keep? Will you have a vacation?
Expectations About Personal and Physical Care
You also need to think about all tasks that need accomplishing. Here is a list of categories to consider as you put together your list. Which of the following will you do?
- Assisting with daily physical care-bathing, toileting, oral hygiene, feeding, hair care, nail care, grooming, dressing
- Transportation– going to doctor’s appointments, senior center, rehabilitation facility, grocery store, retail store, bank, running errands, etc.
- Medical care and treatments- wound care, nebulizer treatments, changing dressings, medication administration, monitoring oxygen, tracking the location of wandering individuals, scheduling medical appointments, monitoring symptoms, tracking progress, etc.
- Financial management – paying bills, calling bill collectors, talking to insurance companies, accounting offices, researching errors, etc.
- Food manager/cook – Plan menus, buy food, prepare food, serve it, feed it, clean up afterward, and store it.
- Fitness Trainer – determine what type of exercise they need and help them obtain it (daily).
- Building and Equipment – Complete house, car, and equipment repair and maintenance responsibilities.
- Advocate and legal authority – respond to all inquiries from legal offices, business offices, insurance companies, and others regarding legal matters.
Asking for Help
When first getting started as a caregiver, many people try to prove that they can make it independently, but all they prove is that they can survive. Many caregivers become exhausted because they fail to ask for help. Whether you are a spouse, parent, or sibling, calling a family conference is good.
Creating a Task List
Create a task list of duties that need completion but do not require the caregiver to perform. Next, present your workload to those present and the difficulty you have with managing all of it alone.
Then, Ask Who Can Help with What?
Ask what each of them can contribute to lightening your load. Hopefully, peer pressure will encourage everyone to chip in and take some tasks away from your “to-do” list with everyone present. You might not lose all the jobs, but anything you can reduce from your list is a plus.
Follow-Up and Confirm Commitment
After the meeting, follow up with an email to everyone outlining the final decisions. You want it clear to everyone who has agreed to do what. Often what one person thinks they said is not what everyone else has understood them to mean. Therefore, it’s important to find out as quickly as possible if someone seems to have agreed to a responsibility they didn’t intend to do.