How to Estimate When Care Will Progress
Caregivers often worry about what is going to happen next for how to estimate when care will progress for elderly parents or a spouse. Persons with health concerns and their caregivers can lose sleep or become immersed in a whirlwind of constant worry and negative thoughts that can be very challenging to stop.
Being in a spiral of negative thinking and worry is like being a passenger in an airplane nosediving to the ground. The goal of this information is to help you avoid a crash by helping you understand four stages of caregiving that can help you predict how care needs might change or progress.
You can learn to:
- Identify current care needs
- Predict future care needs
- Minimize unexpected surprises and the need for emergency healthcare
- Feel more in control of your thoughts
- Reduce caregiver and care receiver stress as the result of having discussions and planning
- Understand Pamela’s four stages of caregiving so that families can manage care expectations
Stages of Care Needs and Caregiver Roles
The four stages specific to care needs and caregiver roles include the Fledgling, the Test Run, the Mezzo-Mezzo, and the Home Stretch. These stages move through the beginning caregiver roles through the caregiving role at the end of life for loved ones.
In all stages and roles of caregiving,
creating an emergency care plan for parents can give confidence to everyone in the family that steps are in place for unexpected situations.
Stage One
The caregiving role is Fledgling. This occurs when caregivers say, “I don’t or didn’t know that I was a caregiver.” When parents are relatively healthy and need low levels of assistance, the Fledgling stage can last for years. This stage presents a significant opportunity to estimate when and how care will progress.
However, even in the fledgling state, caregivers may initially spend 1-2 hours a week with a parent, and the time begins to creep up, adding more hours. It is essential to track the time to estimate how care will progress as caregivers devote more time to caregiving activities. One to two hours a week can quickly become 4 to 6 hours a week and then weekend time commitments.
An accident or a change in health that requires more help can be a catalyst that moves caregivers from the fledgling stage to the next stage, which is the Test Run.
Stage Two
The Test Run is when parents begin to experience physical changes that make them less able to
perform daily activities. One example is the activity of walking up and down the stairs to do the laundry.
Another strenuous physical activity for an elderly parent may be hauling a heavy trash bin to the curb. Activities previously completed with ease become more difficult because of physical weakness, balance problems, parents with heart problems, shortness of breath, and other health problems.
During the Test Run, household support and help with daily chores begin and increase. For example, household tasks might include dusting, sweeping, or vacuuming floors. Caring for pets might involve buying dog food or taking them to the vet. Doing laundry and changing bed linens requires physical stamina, bending, lifting, and hand dexterity.
Deep cleaning bathrooms, removing spoiled foods from the refrigerator, carrying in items from the grocery store, and preparing meals happen during the Test Run stage. You may feel more like an errand runner or maid than a son, daughter, or spouse.
Opportunity to Learn about Health Concerns
The Test Run is the time to learn about health issues that require health and medical decisions to estimate how care will progress. At this stage, an elderly parent may be experiencing slight physical or mental declines. It can be difficult to identify
what is wrong with aging parents. The presence of chronic diseases like high blood pressure, asthma, arthritis, diabetes, or other conditions may result in parents having good and bad days. Loved ones may begin worrying about their health.
As the Test Run stage progresses, caregivers become more involved. Medical providers, including doctors, nurses, and others, may begin calling you the caregiver and expect you to attend all appointments.
When caregivers attend appointments, they may provide background information to medical providers who help with treatment plans for their parents. Caregivers may also follow up to set additional appointments and implement doctor’s recommendations.
Time off Work for Caregivers
Caregivers may notice that The Test Run stage is when they begin taking time off work to attend routine medical appointments. Parents may begin to call more often at work.
This stage offers the most significant opportunity to be proactive in talking about managing health to improve the situation instead of focusing on an illness becoming worse. It’s also important to talk about the time caregivers are contributing and to begin to investigate other resources like paid caregivers coming into the home.
Instead of mom or dad accepting that this is what happens with aging, encourage parents to participate more proactively in their well-being, health, and healthcare appointments. Managing expectations about caregiver time and type of participation is very important to avoid overcommits or over-promises and estimate how care needs will progress.
Set Clear Expectations and Ask Direct Questions
As a caregiver, be clear with elderly parents or loved ones to share what help you can and cannot provide. Do not feel guilty if you cannot do everything that loved ones want.
As elderly needs grow and the time to meet them increases, it may not be possible for one person to do it all without totally disrupting life. Paid caregivers can be hired to run errands, pick up prescriptions, clean the house, do laundry, and cook meals.
Ask your loved ones:
- What plans you have made for when you can’t care for yourself and your needs are greater than what I can offer as your caregiver?
- How much time do you expect me to give each week?
- Do you have the money to pay for caregivers, an assisted living community, or a nursing home?
- If you don’t have the money to pay for your care, have you investigated the state Medicaid program?
In some cases, caregivers may learn that loved ones thought Medicare and Social Security would pay for all their care, so they did not save for retirement. This can be a shock and a great lesson for caregivers of all ages to begin caring for their health today and saving for future care expenses.
If money to pay for care is an issue, investigate the Medicaid program in the county and state where a loved one lives as soon as possible. This may require an estimate of how care will progress in addition to identifying medical care needs and financial resources.
What are 4 Steps to End Worry About Caring for Aging Parents
Click the red arrow button in the picture below to watch the video.
Watch More Videos About Caregiving, Aging, and Health on
Pamela’s YouTube ChannelCaregiving Tasks Grow
As the Test Run stage moves forward, caregivers’ tasks increasingly relate to managing the health conditions of elderly parents. For example, a parent who has diabetes may have a different need from an elderly parent diagnosed with heart disease or arthritis.
While daily activities may be similar, variations in medical care and the use of medical equipment may be involved. Home is becoming the new hospital as many tasks that used to be done in the hospital are shifting to family caregivers.
Coordinating care between multiple doctors can become the caregiver’s responsibility and should be taken very seriously. Medical records and information are not always shared between physicians. This includes medications and tests that can be duplicated or conflict with each other.
These additional tasks and the frequency of caregiver involvement transition into the Third Stage of Caregiving, which I call Mezzo Mezzo, meaning half-half, or one foot in and one foot out.
Stage Three
During the Mezzo Mezzo stage, caregivers spend more time providing healthcare support. The frequency of medical care and appointments increases. You may attend medical appointments monthly or quarterly on a rotating basis to manage current health concerns.
In the Mezzo Mezzo stage, caregivers help elderly parents evaluate information and make medical care decisions. A loved one’s health may fluctuate, change quickly, or experience frequent emergencies that require a visit to the hospital emergency room.
Balancing parents’ independence and their dependence on the caregiver becomes critical in the Mezzo Mezzo stage. Maintaining a work-life balance for the caregiver is essential.
When
caregivers trade parts of their lives, this may be the time to insist parents hire outside help if they have the money to do so.
Being too helpful when elderly parents can still manage safely can create greater dependence. Elderly parents can become prematurely dependent on caregivers to provide help and support.
Do only what parents cannot, even if caregivers can complete tasks quicker, faster, or easier. Let elderly parents and loved ones retain their confidence and self-esteem to manage day-to-day tasks.
Work-Life-Caregiving Balance
The Mezzo Mezzo stage may result in more time balancing caregiving and work responsibilities. Caregivers may come to work early, leave late, or take half or full days off from work to attend medical appointments or have medical procedures.
Caregivers can talk to workplace HR managers and supervisors about a commitment to manage caregiver responsibilities and work. Some companies offer employee resource groups for family caregivers or have other programs available. Make a plan to work your schedule around caregiving appointments.
Increased Time Commitments
Caregivers may feel stretched, stressed, and overwhelmed as time spent on caregiving tasks may be upwards of 20 hours each week. As a caregiver, you may find yourself driving to a parent’s home and spending the weekend to provide help.
Many caregivers in the Mezzo Mezzo stage average 30 hours per week of care for elderly parents while holding down a full-time job. Think very carefully before you give up a job, your career, income, and future retirement savings to become a full-time caregiver.
As elderly parents become less able to manage all aspects of care, caregiving, and legal responsibilities move into the Fourth Stage of Caregiving, The Home Stretch, which is when health problems significantly affect daily activities and
caregiver stress levels can rise.
Stage Four
The caregiver may participate in daily care, or a spouse may become a full-time 24/7 caregiver. In-home caregivers and other services like meal delivery, housekeeping, yard care, and others may supplement the care provided by family caregivers.
Eventually, care needs may advance to the point that the family caregiver cannot emotionally or physically meet the daily demands of care even with the help of in-home caregivers. If care needs will extend for years, money to pay for home care may be an increasing concern.
The Home Stretch may be a time when discussions about continuing to stay at home or thinking about moving to a care community may happen. At this stage, loved ones may not want extensive medical care.
Instead, they may value the quality of life over the length of life. Loved ones may decide to stop treatments for cancer because of the side effects and consider stopping dialysis and other routine health procedures that no longer have a benefit. While these decisions may be heartbreaking for caregivers, they are even more difficult for the person with health conditions who is confronting their mortality.
What is a Good End of Life?
Talking about death and dying is uncomfortable. Society does not openly talk about death. Families may not talk about death and dying until forced to have these conversations.
Planning for end-of-life care can be done prior to reaching this stage of care.
What does a good end-of-life look like for a loved one or for the caregiver? Is a good end-of-life time spent with family and friends that doesn’t involve more medical care that extends the length of life but not the quality of life.
Would you want to live if you could no longer enjoy your favorite activities and felt sick all the time?
End-of-life care is an aspect of caregiving that is most difficult for caregivers to understand unless they, too, have health problems that greatly affect their lives. Everyone will confront these decisions at some point in life unless an unexpected accident results in an unexpected death.
To reduce unexpected situations and emergency care and provide confidence in care situations, talk about how care will progress in your families so that you can be prepared for decision-making, caregiver time expectations, money, and legal perspectives.
There’s a lot to think about. The earlier these conversations occur, the more families can be aligned on a plan.
Looking For Help Caring for Elderly Parents? Find the Information, Including Step-by-Step Processes, in Pamela’s Online Program.
©2024 Pamela D. Wilson All Rights Reserved