Caregiving Blog: The Four Stages of Caregiving for Elderly Parents
The Four Stages of Caregiving for Elderly Parents
The four stages of caregiving for elderly parents relate to the challenges and time commitment of being a caregiver as elderly parents and spouses need increasing levels of care. Based on my personal and professional caregiving experience of more than 20 years care planning for my clients, I developed The Four Stages of Caregiving. The stages of care for elderly parents begin with Fledgling, move to Test Run and Mezzo Mezzo and end with the Home Stretch.
The First of the Stage of Caregiving: “Fledgling”
The first of the stages of caregiving is the “Fledgling stage,” when caregivers say “I didn’t know that I was a caregiver.” Becoming a caregiver for an elderly parent comes as a surprise for adult children. Adult children helping elderly parents with small tasks rarely call themselves by the word caregiver. Thinking of the idea of care planning in the early stages of caregiving supports family conversations and eases stress about future care needs.
I became a caregiver for my elderly parents more than 30 years ago. As the youngest child, I visited my elderly parents each week to help with small tasks. This help included activities like taking my mom for social visits to visit family, grocery shopping, running errands, and helping with small tasks around the house.
We sat, we visited with family, played a game of cards, worked on a crossword or jigsaw puzzle. The idea was that we were spending time together in activities that were helpful to my mother or that were socially interactive and enjoyable. The list of things that caregivers can be a very long list.
The Fledgling Time Commitment
The Fledgling stage of caregiving is the caregiving stage where caregiving creep occurs. Caregiving creep is the slow and barely noticeable build in time of caregiving activities. Initially, a caregiver may spend 1-2 hours a week with an elderly parent. Slowly and almost unnoticeably, the time spent in caregiving activities “creeps up.” All of a sudden, the 1-2 hours a week turns into 4-6 hours a week and continues to increase.
When elderly parents are healthy and need low levels of assistance, the Fledgling stage can last for years. An accident or a change in health, that requires more assistance, is the catalyst that moves caregivers from the one stage of caregiving to the next. At the time care needs change discussions with elderly parents about care planning are essential.
Caregiving creep happens without much notice because the time spent is enjoyable. Fledgling tasks usually do not involve hands-on care or participation in medical care. As caregiving creep happens, caregivers move into the second stage of caregiving that I call the Test Run.
The Second Stage of Caregiving: “The Test Run”
The Test Run stage of caregiving is is when parents begin to experience physical changes that make it more difficult to perform activities of daily living or ADLs. ADL is a term you will hear used by medical providers like doctors and nurses. When activities of daily living become a concern, care planning to identify solutions for areas of weakness are beneficial to help elderly parents remain independent.
One example of an ADL is the activity of walking up and down the stairs to complete laundry. Another may be hauling a heavy trash bin to the curb. Activities once done with ease may become more difficult because of physical weakness or changes in ability.
Activities of daily living include bathing, managing continence, eating, using the bathroom, and transferring meaning sitting or standing from a chair or bed. There are also instrumental activities of daily living or IADLs. These are tasks like using the telephone to make doctor appointments, managing medications and paying bills.
A gap in ADLs or IADLs begins the period of time when elderly parents start to need more assistance. ADLs – or the inability to perform ADLs – are also the main reason elderly parents move from their home to a care community. It is important to notice concerns with ADLs and IADLs so that a plan may be put in place to help an elderly parent retain these skills as long as possible.
The Test Run Stage of Caregiving Accelerates Caregiver Learning
During the Test Run, household support and help with daily chores begin and accelerate. Help with the regular or frequent light work of managing a household begins.
For example, dusting, sweeping, or vacuuming floors. Care for pets that might include buying dog food or taking pets to the vet. Doing laundry and changing bed linens that require physical stamina, bending, lifting, and hand dexterity. Deep cleaning of bathrooms, cleaning out the refrigerator or cabinets of dated of spoiled foods, carrying bags into the home from the grocery store, and preparing meals is part of The Test Run stage.
Health Issues and Medication Management
The Test Run supports learning about health issues and early medical decisions. At this stage, an elderly parent may be experiencing slight physical declines. Being interested to ask questions and learn about health conditions is important and is the beginning of health advocacy.
The presence of chronic diseases like high blood pressure, asthma, arthritis, diabetes or other conditions may result in elderly parents having good and bad days. Chronic conditions in the early stages are not life-threatening but are likely to advance to more serious conditions.
During The Test Run, caregivers become aware of medications taken by an elderly parent. You may hear about medical appointments. You may begin attending medical appointments with a parent to provide support with driving, picking up prescriptions, and organizing future appointments. At this point, medical care may be routine, and the health of an elderly parent stable.
Increased Contact with Medical Providers
As The Test Run stage progresses, caregiver involvement grows. Medical providers like doctors may begin formally calling you the caregiver and expect you to attend medical appointments. As caregivers begin attending medical appointments, background information is asked by medical providers to help with the treatment plans for caring for an elderly parent.
Caregivers may notice that The Test Run stage is when you begin taking time off work to attend routine medical appointments. You begin to learn more about the health and well-being of your parents when you call to check-in. You may notice that one or both parents are having more difficulty performing ALS or IADLS and may seem to be slowing down.
As the Test Run stage progresses, caregivers continue to provide help with social visits, companionship, and household chores. However, greater time is spent talking about and helping with health concerns, medication management, and medical appointments.
In the Test Run Stage of Caregiving the Caregiver Begins to Do More
You may begin to take a more active role with prescription medications. For example, re-ordering, picking up, and setting up prescriptions in easy to use medication boxes for a parent. You may begin taking a more active role in grocery shopping and making sure that parents are eating healthy meals.
These additional tasks and the frequency of your involvement transition caregivers into the Third Stage of Caregiving that I call Mezzo Mezzo, meaning half-half, or one foot in and one foot out.
The Third Stage of Caregiving: “Mezzo Mezzo”
During the Mezzo Mezzo stage, caregivers become more involved in providing healthcare support, attending medical appointments, and supporting elderly parents. Support is provided to evaluate information and make medical decisions. The health of an elderly parent or a spouse may be up and down, change quickly, or experience frequent emergency situations.
Balancing the independence of the elderly parent and dependence on the caregiver becomes critical in the Mezzo Mezzo stage. Maintaining a work-life balance for the caregiver is essential. Being too helpful when elderly parents are still able to manage safely can create greater dependence.
Unless caregivers are attentive to not being too helpful, elderly parents may become prematurely dependent on caregivers to provide help and support. Discussions should also occur within families about additional support either from other family members or the possibility of paying in-home caregivers. When hiring in-home caregivers, it is important to understand your role in managing the caregiver that you hire. Watch this video for practical tips and information.
Juggling Work and Caregiving in the Mezzo Mezzo Stage of Caregiving
The Mezzo Mezzo stage of caregiving involves time away from work. Caregivers may come in early, leave late, or take half or full days off from work. This time off is spent to attend medical appointments and procedures with an elderly parent or spouse. Maintaining a work, life, caregiving balance can be challenging.
At this point, it is essential to talk to your workplace supervisor or manager about being a caregiver and have a plan for how you will work your schedule around caregiving appointments. If your workplace has no programs for caregivers, bring up the subject. I offer a variety of workplace programs to support corporations that recognize the effects of caregiving on their employees.
Mezzo Mezzo is the caregiving stage where caregiving responsibilities and tasks pose greater interruptions to work, family relationships, personal time, and self-care. You as the caregiver may feel stretched, stressed and overwhelmed. Time spent in caregiving activities may be 20 or more hours each week. You may be driving to a parent’s home and spending the weekend because of the distance involved.
Mezzo Mezzo Stabilizing and Maintaining the Care Situation
The goal in the Mezzo Mezzo stage of caregiving is to stabilize and maintain the care situation. The Mezzo Mezzo stage can last for years until the health and well-being of elderly parents or a spouse experiences further decline.
There may be family discussions between siblings about who is available to help elderly parents with different tasks. Disagreements may occur with elderly parents about becoming more involved in their care because they want to remain in control. Elderly parents may have one desire for care that contradicts what adult children think is best.
You may notice that your elderly parents seem less able to manage daily tasks, are more confused or are in denial about the steps needed for them to remain independent and living at home. Siblings may be in denial about the situation because of lesser involvement—meaning not seeing your parents as frequently.
Changes in health may concern you as you notice the health of an elderly parent becomes worse — not better. Concerns may exist that an elderly parent isn’t telling you everything. When you call, you hear, “everything is fine.” When you visit, you discover that everything is not fine.
Stages of Caregiving Stress
As the caregiving needs of elderly parents or a spouse increases, caregivers also experience stages of stress. Initially, when caregivers are in the Fledgling stage of caregiving there may be little emotional or physical stress. As caregivers progress through the stages of caregiving for elderly parents, stress increases in proportion to the time devoted and the level of tasks completed.
It is vital that caregivers seek support through educational channels or spending time with other caregivers who understand. Family members, friends, and others can be judgmental about the aspects of caregiving if they have no experience with the subject.
Being An Advocate for Elderly Parents
Greater participation being an advocate for elderly parents is needed in the Mezzo Mezzo stage of caregiving. Advocacy is a leaned and necessary skill for elderly parents and the caregiver as we age.
Mezzo Mezzo is the stage for talking about legal and estate planning. It is essential to make sure that elderly parents and loved ones have completed medical and financial power of attorney documents, a living will, and a will. Few family members are familiar with the responsibilities of being a power of attorney .
Mezzo Mezzo means you are half-half or one step into the stages of caregiving. You are one step out of going beyond being an occasional support to taking a more active role in making decisions and managing daily care. You may talk to elderly parents about their wishes and plans for care.
Discussions about money and how to pay for care must happen to avoid crises and being pressured to make decisions. It is essential that these discussions occur. Elderly parents may not want to talk about care needs, their wishes, or money. Delaying or avoiding these discussions will result in crises at the time a health emergency occurs, and decisions have to be made.
Managing Caregiver Stress
The realization of the need for care for the caregiver is important during this stage because of the time commitment and level of involvement. Caregivers tend to want to do it all, which poses negative care issues for an elderly parent when a caregiver is exhausted, stressed, or may be inattentive or distracted.
In many of the articles, blog posts and in The Caring Generation® radio program podcasts, I talk about ways to manage health and well-being, initiate family discussions, and make plans for care as medical needs advance. The radio program podcasts are available on Apple Podcasts, Google Podcasts, Spotify, Spreaker, Stitcher, I Heart Radio and many of the major podcast sites.
As elderly parents become less able cognitively, emotionally, and physically to manage care movement to the Fourth Stage of Caregiving, The Home Stretch occurs.
The Fourth Stage of Caregiving: “The Home Stretch”
In the Home Stretch, elderly parents or a spouse are likely to need significant care because of health issues or an ongoing need for medical care. The caregiver may be participating in daily care or may be a full-time 24/7 caregiver. In-home caregivers or other services may be hired to supplement the care provided by family caregivers.
Activities of Daily Living and Hands-On Care
In The Home Stretch stage of caregiving, daily monitoring and hand-on assistance are needed. Caregivers may be assisting with bathing, dressing, incontinence, medication reminding, meal preparation, and other daily tasks. Medical care or oversight may be required to record blood pressure, manage blood sugar or insulin, prepare special diets, empty catheter bags, or other advanced types of care needs.
Ongoing contact and coordination with medical providers are necessary. Elderly parents who need care may be in and out of the hospital or may experience rehabilitation or nursing home stays. If an elderly parent stays at home, this is the stage where a move to a care community may be considered and necessary.
Advanced Care Planning
Caring for elderly parents 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. Money to pay for care may also be a concern if care has extended over a long period of time.
Discussions about back-up plans, accessing veterans’ benefits or public programs, and end of life care wishes for the care of elderly parents is essential. The medical and financial power of attorneys have a duty and a responsibility to ensure that care is provided in the best interest of the elderly parent, spouse, or other loved one.
Palliative and Hospice Care Planning
The Home Stretch is the time where difficult and heart-rendering decisions may have to be made about care. Elderly parents should make their wishes clear about life-extending treatment and planning for end of life care decisions. Adult children may disagree—but have the responsibility to honor the wishes of a parent who wants to avoid extended care.
Palliative and hospice care may be engaged for the last six months or more of life. Plans for burial or cremation, if not previously made, are an important component of end of life planning.
The stages of caregiving provide a guideline for caregivers and elderly adults to identify the transition of aging to needing more daily care. As we age health issues advance. Planning and making decisions about medical care is important so that family caregivers know how to help elderly parents and spouses.
While this time of life can be challenging, caregivers who are more informed and educated can be better advocates for elderly parents through the stages of caregiving.
Looking For More Help With Caring for Elderly Parents. You’ll Find What You’re Looking For In the Caring Generation Library in the Care in the Home Section.
©2020 Pamela D. Wilson, All Rights Reserved
Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate, and speaker. The rare experience of more than 20 years as a court-appointed guardian, power of attorney, and care manager delivers unique and valuable insights. She supports family caregivers and aging adults interested in health, well-being, and caregiving. Wilson is a keynote speaker and educator for corporate human resources departments. She also provides education and programs for financial, insurance, legal, and consumer organizations. Wilson hosts The Caring Generation® radio program and is active through social media.