Caregivers: If You Don’t Have a Caregiving Plan You Won’t Have a Life
The Caring Generation® – Episode 177, October 4, 2023. You may not have a life if you are a caregiver and don’t have a caregiving plan. Learn the risks caregivers face when priorities shift to caring for aging parents to the exclusion of everything else. Gain insights into why thinking about the future is essential to avoid draining your bank account and how to convince aging parents to become more involved.
The Price Paid by Family Caregivers
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If You Don’t Have a Caregiving Plan – You Won’t Have a Life
If you don’t have a caregiving plan, you won’t have a life. While this may seem like a very strong statement, caregivers who have been in this role for some time will attest that caregiving responsibilities and related emotional stressors can become all-consuming.
Talking about having a plan to care for aging parents is relevant for caregivers who are young and healthy and who may not have a care plan for themselves and their retirement years. Everything learned from caring for an aging parent or a spouse is a lesson in preparing to care for yourself.
Family Caregivers Pay a High Physical and Emotional Price
The cost of hiring in-home care, accessing and paying for health insurance or medical care, and paying for assisted living or nursing home rates can be shocking. Medicare does not generally pay for this type of care unless there is a medical necessity. Medically necessary services are used to treat an illness or condition by a medical or health care provider. These services may include a hospital stay, health screenings, or lab tests.
The price paid by family caregivers of aging parents or spouses, specific to financial payments or emotional stress, can drain bank accounts, ruin health, and damage family relationships. So, if you are new to being a caregiver or new to the journey, know that being a caregiver can extend much longer than you think.
Why Having a Caregiving Plan is Important
Let’s look at three areas for why it’s crucial to have a caregiving plan:
1 Caregiving tasks can take over your life and empty bank accounts
2 Caring for aging parents involves medical tasks and financial management
3 Creating a plan supports meaningful discussions about care needs and decision-making
The caregiving journey is different for everyone, as are the circumstances. There may be no perfect answers because of the people involved, unexpected circumstances, and other factors.
The choices may not be perfect—meaning that none seem good—but still, choices must be made. Caregivers who have a plan feel more confident and less stressed.
1 Caregiving Tasks Take Over Life and Empty Bank Accounts
Caregivers and their loved ones are often shocked by the costs of care. The following information is from the Genworth Cost of Care Calculator for 2021, specific to assisted living and nursing home care in four states: California, Colorado, New York, and Texas. If you want to plan for the future, use an average 6% year-over-year increase.
- In 2021, the average annual cost for a private assisted living one-bedroom unit in Colorado was $57,500, California $ 63,000, New York $54,950, and Texas $47,940.
- A shared—not private—nursing home room in Colorado in 2021, $102,810; California, $ 117,530; New York, $153,500; and Texas, $61,503 in 2021.
How many of you have parents with $50,000 or 100,000 dollars sitting in the bank? If your parents have financial resources to pay for care, this situation allows more time to develop a comprehensive plan. If elderly parents are low-income and without substantial savings, investigating state Medicaid programs would be a component of a caregiving plan.
The benefit of working with aging parents to create a financial plan is that it supports practical discussions about money, the costs of care, and who will provide the care. If you are the caregiver, create a similar plan for you and your spouse or partner. This will give you a perspective on the type of planning and saving necessary to ensure a well-planned retirement.
Parents May Hesitate to Share Financial information
Depending on your relationship with your parents, they may or may not be comfortable sharing information about their financial situation, savings, monthly income, etc. If this is the case, it is essential for you to understand and be able to discuss the why.
It can be challenging to explain why planning is essential, even if parents do not have a lot of money if you don’t have the facts.
The why includes the costs of care associated with aging and health and timeframes to research and apply for public programs, like Medicaid, if necessary.
While none of us think we will age and need a caregiver, this stage in life will happen to everyone in varying degrees if one lives long enough.
This leads to consideration of factors that affect health but may not seem health-related.
Social Determinants of Health Factors and Caregiving Plans
You may heard the term social determinants of health factors in a video, podcast, or blog post on this site. Social determinant factors include children having a stable upbringing, education, parental support, a safe home, clothing, and access to food.
For young and middle-aged adults, social factors include education and if you have a job. Whether you can afford or struggle to pay for rent, transportation, or food. The quality of relationships in the workplace and family life impacts physical or emotional stress.
The effects of social factors may not be immediately noticeable, but over time, they add up. Did you know there are noticeable signs and health factors that appear 20 or 30 years before a diagnosis of Alzheimer’s or dementia? Looking back, many things in life have a timeline of cause and effect.
The Timeline of Caregiving
Caregiving is a lifelong role that begins at birth and ends at death. Babies are cared for by parents who are caregivers. Elderly parents may be cared for by adult children who become their caregivers.
The timeline of caregiving begins with the care of children and then usually aging parents or grandparents. Eventually, the timeline includes a spouse or partner, another family member, or a friend.
In the middle of all of this, you may be the person who needs care, or your timeline of needing care may be after you take care of everyone else in your life.
Traditionally, women have been the caregivers who give up jobs and income to raise children.
Then, they care for elderly parents or a spouse. While more men are becoming involved in caregiving, they rarely give up their jobs.
The Steep Price Paid by Female Caregivers
The price paid by female caregivers is steep. Many opt out of the workforce and give up careers and earned income to become family caregivers. Due to time out of the workforce and skill obsolescence, they rarely can make up for these financial losses. An article called Mother-Famillies-Work describes the price women pay to be family caregivers.
For all caregivers, other costs relate to physical and mental health problems. Caregivers place their healthcare needs at the bottom of their to-do lists because they are too busy to care for themselves. Placing their needs last means that they are more likely the next in line to need care.
Here is another example in the caregiver timeline. If you are an adult child caregiver married with children or single. Look at your care activities. What parts of life do you trade to have, care for, and raise children? What parts of life do you trade to care for elderly parents?
Every choice and every decision has short and long-term consequences. If you have children, you know you are committed for 18 to 21 years before they leave home to go to college or live independently.
The situation with the care of aging parents is similar yet opposite. You may be committed for the same period if you have aging parents. The difference is that you support a life in decline instead of a life of possibility.
While some caregiving skills may be similar, like empathy, compassion, understanding, and running a household, the skills required to care for aging parents are different.
Care Needs of Aging Parents
If you have an aging parent with health concerns like diabetes or high blood pressure, you may find yourself managing medications. In addition, you may be taking blood sugars or helping parents with insulin injections, managing continuous glucose monitors (CGMs) or insulin pumps. Persons who have diabetes have very detailed nutrition and exercise recommendations.
Parents with high blood pressure who have been prescribed medication may need to track their blood pressure daily to ensure the medications result in the desired medical outcomes. So, you or a parent may use an automatic blood pressure monitor to document readings in a notebook to provide to the doctor.
Older men and women may experience incontinence. So, like with babies, caregivers help with personal hygiene products. In other situations, a father may have an indwelling catheter with a bag that needs to be emptied. There are all types of unexpected tasks that caregivers find themselves learning.
Creating a care plan to help manage medication re-ordering, organizing medications in reminder boxes, or creating a schedule to order personal needs supplies can reduce a caregiver’s daily stress.
With all of these details to manage, it’s essential to have an honest discussion with parents about what is possible and practical.
Part of this discussion includes what parents will commit to doing for themselves versus the expectations of a caregiver’s activities. It’s also important to have an emergency plan.
Remaining physically active is one of the best things anyone can do to remain independent. If your parents want to continue to live in their home, gaining physical strength and remaining active may require effort.
It’s easy to take good health for granted when young. With age comes physical weakness, potential injuries, and health problems. If your parent sees a doctor, what health recommendations have been made? If your parent is physically weak, is mom or dad participating in physical therapy?
Steps to Create a Medical and Financial Care Plan
Part of the reason families don’t have a care plan is that care planning is rarely discussed until there is an interaction with the healthcare system or involvement with a caregiving group.
An online program called Support Caring for Aging Parents is available on this website—Module 5 offers step-by-step instructions for creating a medical and financial care plan for aging parents. There are eight modules in total offering caregiver support on various topics.
A Financial Plan for Caregiving
The caregiving financial plan begins with investigating money available to pay for regular expenses. Do your parents have a monthly budget? If not, can you help them create one?
Beyond this, what happens if additional funds are needed to pay for care? Is there money, and if so, how long will it last, given the rates for in-home care, assisted living, memory care, or nursing home? If no money is available for care, caregivers should investigate Medicaid immediately. Medicaid is different from Medicare.
Call your local county Area Agency on Aging or the county health department to request information on how to contact Medicaid, which a different name can describe in each state. Then, go through the process of learning how aging parents can qualify.
These discussions can be difficult. Talking about money, especially when insufficient, is never a pleasant topic. But if you don’t have these conversations, caregivers may pay a high price with their health and income if you pay for expenses for aging parents.
A Medical and Legal Plan for Caregiving
The other portion of a care plan relates to health and medical needs. In between financial and medical is a legal plan.
A legal plan includes designating a medical and financial power of attorney who can decide if or when your parents cannot. Caregivers should also have these documents.
Then, there is a living will, which everyone should have. This document says if this happens and I can’t make decisions, this is the care I want or do not want. Many people do not want to be kept alive in a hospital by machines.
A living will is a document in which you describe your wishes for extensive care, so there is a legal document that healthcare providers will recognize. This document will eliminate disagreement among family members about the care and treatment desired by the person who needs care.
Create these documents for yourself as you help a loved one create their documents.
A medical care plan includes a list of all doctors, health problems, medications prescribed, prior surgeries, allergies to medication and food, and a list of anyone involved in care with their contact information.
This includes references to the medical and financial power of attorney and as much detail as possible about care needs.
A medical and financial care plan ensures that another person can step in to help a loved one if you unexpectedly die tomorrow or can’t assist. There are many circumstances where caregivers die before the persons they care for.
2 Practical Steps for Care Planning
Practical steps to have a caregiving plan include researching and becoming educated about the health conditions of your parents and about options for care that do not involve you.
Depending on where you live, your local Area Agency on Aging or the state may have a website with a list of resources for caregivers. This research website or printed materials obtained from a community health center may provide information about disease-specific organizations.
Disease-specific organizations include the Alzheimer’s Association, the Stroke Association, Parkinson’s Association, the Heart Association, the arthritis association, and others. If your parent has a diagnosis, there is likely a disease-specific organization that offers free information. These organizations may have caregiver support groups.
Attending doctor appointments with parents is another way to learn about aging parents’ health conditions, their medications, and what the doctor recommends. Make sure your parent is involved in this process so that they know their participation is necessary.
If you do and manage care-related details for aging parents, you will do more and more, which means you won’t have a life. You may already be doing too much and not have a life.
Understand each health diagnosis and how each diagnosis relates to another. Ask the doctor or medical office staff questions about the medications a parent takes and why. Become the expert on your parent’s health conditions and do the same for yourself if you have health issues.
Preventative Health Actions and the Risk of Healthcare Bias
If possible, ask the doctor about preventative steps to manage these conditions instead of watching them become more severe. If you are unsatisfied with a physician’s answer or if recommendations are not resulting in improvements, it may be time to ask for a specialty referral to a doctor who has more skills in the area of the issue—for example, an endocrinologist for diabetes or a cardiologist for heart concerns.
Finding a geriatric physician can be very helpful if your parent is older and has multiple health concerns. Geriatricians have extra training in the care of older adult conditions.
If you have experience with doctors and navigating the health system, you will learn that healthcare providers can categorize individuals by age, sex, or skin color. While there are commonalities, there is a risk in categorizing people who may not offer the best solutions for aging parents.
There are always exceptions to the rule. Know that doctors—as much as they want to do a good job— make diagnoses and recommendations based on the information you provide or what they observe at an appointment.
This is another reason to have a medical care plan with a medical history, notes about the health of loved ones, and copies of doctor visit notes, tests, and other information.
Keep a notebook or create an online file. In the file, document changes in health or concerns. Include notes and follow-ups from medical appointments.
Doctors rely on facts and timelines. For example:
- When did X happen?
- At what time of day?
- Is X a one-time event, or is the experience repeating or continuing?
Sharing detailed information and asking questions results in better care. So be curious, research, and learn about health conditions so that you and the person you care for can make good decisions.
Investigate Care Services to Avoid Crises Planning
Specific to learning about care services that include in-home care agencies, assisted living communities, or nursing homes, call two or three to request information.
Meet with the organizations. Schedule tours to visit communities. While this may seem like a lot of time and effort, I recommend doing this groundwork before a need arises. This will ensure you have a care plan in place when something happens, so you don’t have to make a rush decision.
Crises planning—for example, when a parent goes to the emergency room and is sent home and suddenly can’t be left alone— can be very stressful if you don’t have a plan for arranging services. Do the work upfront. Make the time to prepare.
If something happens, with a care plan in place, you can make better decisions. Specific to financial matters, ensure that someone can sign checks or pay bills if a parent cannot. This can be accomplished by a parent appointing a financial power of attorney and placing the documents on file with a bank or other financial institution.
If your parent has an accountant or an investment advisor, talk with this person about having access to emergency funds if something unexpected occurs.
If you plan for a job and have goals to meet, you likely have steps or processes you use. Creating a medical and financial care plan for aging parents or yourself is similar.
These documents can help you move through situations that are likely to advance. By creating these documents, you can have discussions with the person you care for to gain agreement on what comes next.
What If Aging Parents Refuse to Plan
There will be situations where aging parents will refuse to plan. They may not want to share information—or they will say they don’t need help.
Some loved ones may be in denial about the seriousness of their health, financial, or home situation.
If you are the caregiver caught in this situation where you want to plan and your parents do not, then it may be time to consider setting ground rules, also called boundaries.
Beyond the skills we discussed earlier that caregivers never think they will need to learn, like helping with medical or personal, this is number 3.
3 Initiating Difficult Discussions about Why Parents Should Have a Care Plan
If your parents refuse or are in denial, and you are in over your head financially paying for their care and don’t have another minute to commit to help, it may be time to step back.
Many caregivers feel resentful that parents refuse to cooperate and feel guilty at the same time. Daughters and sons can arrive at a point where the price of being a caregiver is too costly.
Difficulties may exist at work. Relationships with a spouse or children may be on the rocks. Caregivers may be continually sick.
A setting boundary conversation might begin like this:
“I have spent hours researching your health conditions, medications, costs, and options for care because managing all of this is too much for me. I want to discuss and create a written financial and medical plan for your care so there are no doubts about what you want. I can’t continue doing everything.”
If your parent refuses, then be prepared to step back. Acknowledge the difference of opinion and then state your limits.
- I was hoping we could agree, but maybe we can’t.
- While you think about this, I will reduce the time I can help you to something more reasonable for my schedule.
- I researched all the information, including an in-home care agency and the Medicaid office. I suggest you contact these organizations to learn about options and costs so that if I can’t be here, you have a backup option for care.
This discussion may not go well. Your parents used to your help, may be angry. That is their choice.
You choose to stop paying with your life, time, or health. Everyone has the right to make impractical and sound decisions.
When you set this boundary, it’s also vital that you don’t rush in to save the day when mom or dad calls for help or has an emergency. Place the responsibility of planning on loved ones who refuse or deny the need.
This action helps your parent help him or herself and removes you from the position of being the one who made the decision.
So that if something goes wrong, you cannot be blamed because you called attention to the importance of planning.
So, for caregivers who feel stretched or overextended by caregiving duties, if you don’t have a care plan. You won’t have a life.
Many caregivers find themselves in this impossible place. Some decide to make a change. Others stay for the duration. There is no wrong or right answer. There are choices and consequences.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.
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