Experienced Adults Special Edition: The reality of being a caregiver

By Kate Klimesh,

The hardest part of taking care of someone you love, especially a parent, sibling or spouse, is seeing the change in that person as they go through the natural decline that can come with aging, or suffer through a round of critical, debilitating illness. The biggest part of the sadness that comes from watching this process is two-fold: this is someone you know and love – care for deeply, that has been a part of you, who is now, simply not who they always were. They become frail or forgetful, or suddenly dependent or unsure – simply not the same personality. And this sometimes jarring loss is what caregivers grieve.

Caregivers also grieve because they are powerless to affect any real change against the symptoms and signs that come about as age, illness and infirmity takes hold. Whether over weeks, months or years, they cannot make it better by willing it so, nor by being there extra hours or through countless hours of encouragement and planning.

Behind the pain of grief is the reality of being a caregiver – that one day their loved one’s needs will be beyond what can be given in the current setting. That no matter how hard they work, or how much support they give, their loved one will be in a better place and receive more appropriate care in a more formal setting with medical services and 24-hour care available.  

What does this mean? This means a team will coordinate and work together to provide food, shelter, housing, medical care, daily monitoring, and social, spiritual and emotional support. 

These are typically difficult conversations to have with loved ones as it can bring up feelings of guilt and failure.  “They took care of me, but I am unable to meet all their needs.”

According to a 2020 AARP.org study, one in five Americans are caregivers. The average length of time a caregiver spends taking care of a loved one is five years. Many lose their jobs due to caregiving responsibilities and endure financial distress, as well as physical and mental well-being declines. One in five caregivers suffer their own major health crises, ending their caregiving abilities.  

Even those not living with their loved one can feel pulled or distracted by feelings of worry that something will happen – a fall, medication error or scam – or become fatigued by being “on-call” 24 hours a day, or simply from keeping track of and maintaining two separate households. 

Caregivers may feel like they’re always watching, observing, checking, double-checking and trying to investigate issues covertly when they can’t recall if medication schedules were kept, or meals were missed, or what the doctor said at the last visit.

It is equally important for any caregiver to remember that their primary goal in providing care is to support the loved one’s independence as much as is possible for them in this new situation.

Five stages of caregiving

Caregiving is a complex, emotional experience with inherent rewards, risks and roadblocks. A variety of experts and specialists who understand the intricacies of caregiving
conceived and refined these stages.

Expectant Caregiving: In this initial stage of caregiving, potential caregivers come to the realization that an ailing loved one can no longer care for themselves entirely. This realization may come from observed behavior, from a medical professional, or a combination of the two.

In some cases, a diagnosis may be a surprise. With it comes feelings of dread and stress surrounding a number of unknown issues, as well as an upset to routine for both the caregiver and loved one.  

When a loved one was suddenly told they could no longer drive, it was expected that I be available to them for shopping, appointments, banking, etc. When physicians would ask if they needed transportation arranged for appointments, the answer was, “No, my family will take me.” This was a simple, yet stressful expectation as the caregiver tried to balance work, family, mental health and caregiving.

It’s of great importance, then, that caregivers educate themselves as much as possible during this stage. Information needed includes (but is not limited to) the severity and prognosis of the ailment, availability of community and peer resources, traditional and non-traditional treatment options, and details regarding the roles and responsibilities of a caregiver.

This is the most important stage for setting boundaries successfully for all involved. Draw clear and mutually understood distinctions as to what is within the loved one’s abilities to perform independently, and what they truly need assistance with. It is also a perfect opportunity to ask the loved one what aspects of daily life are important to them, to best prioritize the support that can be provided.

It is at this point that Assisted Living options are appropriate for alternate housing, based on recommendations from a physician.

Freshman Caregiving: The freshman stage includes the first six months or so of caregiving support. As this stage begins, caregivers have moved out of the initial shock and unsettling nature of the first stage and have figured out how to make at-home caregiving work. Continued emotional connection with a loved one as well as a greater quality of life for them are tremendous benefits of the at-home caregiving experience.

As caregivers acquire more knowledge and experience in the role, routines become easier to manage. Some may secure third-party paid care as this stage begins, realizing that they cannot be or aren’t willing to be a caregiver in the capacity needed. Community resources usually enter the picture at this stage as caregivers look for additional support outside of their home.

This is typically where home health care and/or in-home services like housekeeping or shopping services are utilized and appropriate.

Entrenched Caregiving: The majority of the caregiving journey is spent in the Entrenched stage. In this third stage, caregivers have established a firm routine for taking care of their loved one. Medications are routinely autoshipped; bills may be handled by autopay or a third party, medical professionals have visits scheduled throughout the month and know the patient’s prognosis well; patients have time for socializing and other activities in a monthly schedule.

Entrenched caregiving can encompass mild, medium or advanced impairment. 

Mild impairment needs little assistance with activities of daily living – cooking, cleaning, walking, socializing and attending recreational activities, but caregivers can help set up systems to ensure success in areas of difficulty. Basic monitoring and frequent communication ensures they stay informed. A log book or journal for keeping track of daily must-dos, medication dispensers with alarms, scheduled time to go through the mail, and a series of notes can be just a few systems that may be helpful.

Medium impairment requires more direct supervision and support as mobility and cognitive function dictates. Caregivers must be organized and ensure there is adequate support for the loved one and for the caregiver, as caregivers may find themselves breaking down physically, mentally and emotionally trying to deal with this all-encompassing endeavor.

Advanced impairment means the loved one needs assistance and supervision around the clock in their home. Patients need help waking up, getting dressed, eating, taking medication, moving from one area to another (if possible), taking a bath and more. If care is continued at the home, a second caregiver may be needed to cover the primary caregiver’s off hours. 

This stage can utilize more extensive home health services, or skilled nursing facility services based on the advice of the physician.

Transitional Caregiving: Assisting a loved one to move from one level of care with medical professionals, whether in-home health care around the clock, or into a skilled nursing facility. This is the difficult time when a caregiver may feel self-doubt, guilt and regret. It is important to remember that as a caregiver, you have done what you could to the best of your abilities to provide care and support for the loved one. There is absolutely no need for shame or regret simply because your loved one needs more care than you can provide as an individual.

They say it takes a village to raise a child, and even in elder care facilities there are teams of staff to provide round-the-clock care – it is impossible for one person to be able to meet each and every need 24-hours a day, seven days a week.  Know you gave all you could, and be grateful for the time you had together. Know that this transition is in the loved one’s best interest for their well-being.

Death, Rest, Renewal (End of Caregiving): The final stage of caregiving begins with the death of the loved one. This is a time for caregivers to reflect, meditate and share on the experience. Revel in the memories made with a loved one, and they are no longer in pain, no longer bound by their physical ailments and limitations. Caregivers can celebrate the lives of their loved ones, while grieving their loss. They may need to take some time for themselves, to reinvent what they want for their own lives beyond caring for their loved one. What now makes life most worth living?

Many caregivers may experience a level of grief leading up to and following this stage. This is normal and working through your grief, either on your own or with the help of your agency, is a healthy part of moving on.

These stages aren’t concrete examples of what every caregiving experience will be like, but rather signposts revealing the different degrees in which a caregiver can be tried and tested. Each stage has its own issues, appropriate actions and possible outcomes.

The Driftless Region has many resources available to caregivers with a wonderful central resource at Northeast Iowa Area Agency on Aging (visit www.nei3a.org or call 1-800-779-8707). In Minnesota, contact the Southeastern Minnesota Area Agency on Aging at semaaa.org or call 507-288-6944.

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