One of life's major transitions arrives when a parent's health declines to the point that they can no longer care for themselves, and one of their children becomes their guardian. It may happen suddenly–perhaps after a medical emergency requires a prolonged recovery period. Other times, the realization of the need is more gradual: You may start noticing slight behavioral changes that don't mean much individually, but collectively suggest that the parent's cognitive abilities are in decline. However it comes about, the process can be emotionally wrenching, and as with any major life change, a considerable amount of adjustment is required.
No matter how tactfully you try to introduce the change, it's never easy for a parent used to taking care of others to find themselves compelled to rely on someone they used to take care of (and whom they may still regard as a child). It disturbs the natural order for both of you. Depending on the parent's personality and mental state, there may be resentment, confusion, or irritability.
As a guardian, you'll find yourself dealing with the additional stress of having your own life become more restricted. A Humana study that asked Children Caregivers what sacrifices they were making to care for aging parents revealed that 63 percent were now devoting less time to hobbies and personal interests, 46 percent had given up social activities, 43 percent had skipped a vacation, and 36 percent had dipped into personal savings.
A rising trend
Data from Caregiving in the U.S. 2020, the most recent in a series of studies conducted by the National Alliance for Caregiving (NAC) and AARP, reveals that more than one in five Americans currently care for an adult family member. Looking at the number who care for adults over 50, previous NAC-AARP reports had shown that the percentage of unpaid caretakers looking after a parent grew from 11 percent in 2008 to almost 14 percent in 2014. The 2020 report revealed that the rate subsequently rose from 16.6 percent in 2015 to 19.2 percent in 2019 (from 34.2 million individuals to 48.1 million). Thanks to rising life expectancies due to medical advances, this upward trend is likely to continue for decades to come.
The 2020 study, conducted before the pandemic, also revealed that family caregivers are in worse health compared to five years ago. Caregivers reported suffering from physical, emotional, and financial strain, with 21 percent reporting that they felt alone, even though most of them work full- or part-time. Compared with 2015, fewer caregivers reported their health status as excellent or very good (41 percent, down from 48 percent in 2015). Those caring for their older relative because no one else in the family was willing to (so-called “no choice” caregivers) were more likely to report feelings of high emotional stress, high physical strain, and loneliness.
What causes this stress, and what can be done to manage it?
The battle over the car keys
Many adults have had difficult relationships with their parents going back for years. Past disagreements are bound to flare up when both of you are placed in the close proximity that guardianship implies. But even when a parent-child relationship has always been good, one of the earliest stressors that can arise is the parent's desire to maintain their independence–signified by driving themselves wherever they feel like going, whenever they want to go there.
“For the past two years, Joan's father has been living in her home with her three children. ‘Right now, we're fighting about his driving. Not out of malice, but because I know it's better for everyone if he doesn't drive anymore. Heaven forbid if he injures himself or someone else.'
Joan's father, who has had some fender benders and mistakenly parked in the wrong driveway, disagrees. ‘They can take away my driver's license, but I'm still driving,' he declares.”
“After my mother had been driving fairly cluelessly for two years or so, we hid her keys. Her dementia had progressed to the point that she didn't remember that she couldn't find the keys. She had been a widow for 25 years; driving was vital to her.”
While today's 20-somethings tend to be less interested in car ownership than their parents, having access to a car represented independence and freedom for the Korean War and Vietnam War generations. Therefore, it's not surprising that the battle to persuade a parent to give up driving can be the first big clash between a guardian and parent. Driving is a key symbol of independence, and admitting one is no longer capable of doing it safely is often difficult: The parent senses this is not temporary and implies the beginning of an irreversible decline of muscle memory and instinct, along with encroaching cognitive impairment.
Elderly parents whose adult children have forbidden them to drive have been known to react like rebellious teenagers put on restriction. Stories abound of guardian caretakers hiding keys from the parent, only to have the parent find them and head out on an unsupervised “joy ride.” Some adult children of dementia patients have gone so far as to disable the engine or sell their parents' cars to prevent the risk of the parent defiantly driving away, only to end up lost, or even worse, in a bad accident.
As difficult as it may be to confront a parent about the issue, safety must override kindness. It is irresponsible to allow someone to drive when you know they pose a danger on the road. Many caretakers have found that parents accept a doctor's order to quit driving more easily than when it comes from their adult child. The parent-guardian tension generally ends one of two ways: Either the parent adjusts to being driven everywhere, or their mental state declines to the point that they no longer think about the car.
Siblings: help, hindrance, or a bit of both
Becoming a parent's guardian can lead to disagreements over everything from daily routines to major life choices, not only with the parent but also with siblings who have strong opinions about how and where care should be provided, money matters, and which doctors and treatments to seek out. While siblings may assist the primary guardian with caretaking responsibilities, the situation may also exacerbate pre-existing tensions and decades-old relationship habits.
Finances can be one major cause of disagreements: Elder care is expensive, and the chilling prospect of having to drain your parent's savings and dip into your own is upsetting. When siblings sit down together to work out a key decision, such as placing a rapidly declining parent in a nursing home, what should be a rational, reasoned discussion can devolve into a fight. Siblings may find themselves screaming at one another in a way they haven't done since childhood.
“My mother drives me crazy when she acts normal to others and not to me. If I tell her something, it is wrong. If someone else tells her the same thing, she does it and acts like they know everything. She also lies to everyone about everything in order to have a good story, and no one knows what is real. They think she is so adorable and sharp. They think she is sane and I am an idiot….
She appears very normal and sane to others, but when she is home, she has different actions. She has fooled many people, including doctors.”
Some guardians encounter a phenomenon they call “Show-timer's”: when a parent suffering from dementia, who is consistently difficult to reach mentally when they're together at home, somehow manages to summon all their mental energy in public and behave as if there were no problem.
For example, when visiting with company or at doctor visits, early-to-moderate dementia patients can gather up all their composure, put on their best behavior and appear perfectly normal. This gets harder as dementia progresses, but it's maddening for the caretaker whose concerns are dismissed by others.
Burnout: heading it off at the pass
The examples above help explain why caretakers face so much stress–stress that can lead to burnout if left unchecked.
Burnout doesn't happen overnight. A primary caretaker who goes through the same exhausting routine day after day with a declining parent can gradually slide into an exhausted state without even recognizing it.
Signs of encroaching burnout include:
- You're always tired, yet can't sleep well;
- You can't get rid of a cold or another relatively minor ailment;
- You have trouble focusing;
- You're unable to enjoy activities and things that used to give you pleasure;
- You get angry more often and more quickly than you used to;
- You find yourself withdrawing from others;
- You're depressed and find yourself either over-eating or, conversely, lacking any appetite.
Self-care cannot be neglected. Pushing yourself to a point where you cannot competently handle your responsibilities isn't healthy for you or your parent. Sacrificing your own health and well-being could end up harming the loved one whose care has been entrusted to you. To echo flight attendants' oxygen-bag instructions during takeoff, “If you are traveling with a child or someone who requires assistance, secure your mask on first, and then assist the other person.” The same philosophy applies to guardianship.
Here are suggestions from guardians who have been in that grim mindset and managed to find ways to cope:
Keep a daily log and, if possible, a journal, as well. The purpose of the log is to briefly record that day's interactions with your parent and how they affected your mood. You should periodically review to see if your mood or stamina are on a steady downswing.
The journal's purpose is to write down more in-depth thoughts, impressions, and feelings–a form of self-therapy.
Find support systems – virtual and IRL
You can find useful mutual aid and support resources online that are moderated by senior-care specialists. The support resource centers connect families who are caring for aging parents, spouses, or other elderly loved ones with the information and support they need to make informed caregiving decisions.
IRL (In Real Life)
Senior centers, adult daycare
Most communities operate senior centers and adult daycare, so you can get the parent out of the house for a few hours one or two days a week to give you some time to take care of your own needs.
The National Respite Locator Servicecan help you find resources for respite care. Respite care provides short-term relief for primary caregivers, and it can be arranged for just an afternoon or several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center. Respite services charge by the hour or by the number of days or weeks that services are provided.
The Eldercare Locator is a nationwide service that connects older Americans and their caregivers with trustworthy local support resources. There are also many consultants such as Creative Eldercare Consultants to provide families help in making housing and care choices.
Unpaid leave from work
The Family and Medical Leave Actentitles eligible employees of covered employers to take twelve workweeks of leave in a 12-month period to care for a spouse, child, or parent who has a serious health condition. The law protects the employee from being fired or demoted for taking the leave.
“Covered employers” include private employers with at least 50 employees. All government agencies (including local, state, and federal employers) and public and private elementary and secondary schools are covered by the Act, regardless of the number of employees.
Hospice care is state-subsidized at-home services provided for those who have life-limiting illnesses from which they could die within six months or less. Hospice care focuses on comfort (pain control and symptom management), not on finding a cure. All U.S. citizens age 65 and older are entitled to Medicare or Medicaid coverage for hospice at the end of life.
More information is available at the Michigan Department of Health & Human Services website.
Some final advice from guardians who have lived through the arduous process of being guardian to their elderly parent and came out the other side:
“Mom's doctor told me a couple years ago to come to grips with the fact that, in Mom's mind, nothing I do or say will ever be right, so I'd better get used to being wrong. That's a tough thing to live with, but at least it grounds me and helps me shrug off the comments and weirdness. I still lose my patience, I still get angry, and I still feel guilty about that.....but I think that, if you deal with or live with dementia behavior on a daily basis, you need to recognize your limitations.”
“To those of you still dealing with the day-to-day aging issues, hang in there, give yourself breaks, get walks, and also some latitude to know that as long as you are trying your best, that's the best you can do. We are not perfect.”
For those of you struggling with a parent with increasing health concerns, consult with a professional. At Great Lakes Family Probate & Estates PLLC, our team can help you in the guardianship and conservatorship process and provide crucial Elder Law planning. We have been guiding clients find solutions these life changing transitions for years and we can help you too. Call us at 888-554-5373 or contact us online to set up your consultation.