Main Street News

A funny thing happens to children as they age – many find themselves becoming caretakers to their aging parents. While it can be a natural progression to take on these added responsibilities and many do so out of love, respect, and compassion, the role reversal can be stressful, confusing, and sometimes frustrating.

For children living in oblivion unaware of such necessities, transitioning from being the one who is cared for to the one who is doing the caring might catch them unexpectedly. But even if taken by surprise, the reality is it’s inevitable most parents will need a child’s care. For as our patriarchs and matriarchs enter their sunset years, who else but their children should tend to their day-to-day needs?

Asking for help

It can become tense for parents who don’t know how to walk that fine line. Many fret over asking for the help they need without imposing on their children. They want them to have their own independent lives while still being at their beck and call. It’s a delicate balance – one that’s difficult to achieve, can be fraught with tension, and often involves tough conversations. But it’s well worth the effort, from this writer’s perspective.

First, though, we children must accept that while once the center of our parents’ universe, cooed and coddled over, that’s no longer the case. For years, our parents lent us their shoulder to lean on; now they need ours. It’s the pattern of life, yet it’s not one that a lot of kids are prepared for, surprisingly.

I know I wasn’t, and neither were my sisters. As the youngest of three girls, all 23 months apart (unbelievably no planning was involved, according to my mom – just a lot of crossed fingers), I was not actively involved in my father’s care during his struggle with Alzheimer’s disease. It was very hard all the way around; he was in South Florida with my mom and middle sister, who with her family bore the brunt of his highs and lows. It exhausted them – physically and mentally. My older sister did her due diligence in visiting on occasion, certainly more than I was able to arrange. Before my father’s illness took full grip of his cognitive abilities, I cherished the talks we shared on the phone, though certainly that wasn’t nearly adequate. Knowing he was miserable in a nursing home down south, wishing every single day to go back home with my mom, was heartbreaking.

My mom’s middle-of-the-night call to tell me he passed away in his sleep was a gift; at least he had escaped any added suffering. Still, knowing there was little I could do from New York for my father was hard and still weighs on me nearly a decade after his death.

These days my focus is on my mother, whom I love dearly. I’m thankful she’s still around and nearby, relatively healthy, and able to spend time with me. She’s in her early 80s and has just minor health issues. A recent bout of skin cancer was successfully dealt with; otherwise, she has similar complaints as other octogenarians: arthritis, high blood pressure, insomnia, unsteady gait, aches and pains, and several ailments I’m sure I’m forgetting. What really troubles her along with many seniors I know, especially those living alone, is a combo of anxiety and depression – especially in the wake of the COVID-19 pandemic. It’s not easy for the elderly, especially if widowed, to venture out into today’s world.

Consider how high-tech everything has become, from our phones to our TVs to our computers to our cars to our banking to our shopping. It’s difficult to navigate life if you’re not “plugged in.” It’s no wonder those over a certain age bracket need constant tech support and who better to provide it than their own kids – other than their grandkids?

My parents spent their lives doing everything possible to ensure my sisters and I had everything we needed and most things we wanted. I’m grateful for their love and support. I feel privileged to help my mom, despite the stress it sometimes causes. Some of that stress crops up because of lingering unresolved issues, time or work obligations, or expense.

I’m also worried that if I don’t schedule time with my mom, I’ll miss out on precious moments together. When I do see her, I just want us to enjoy our time together. We do, too, as we have since I was a kid; we could always be silly together and simply have fun. I’m so thankful for that. I’m especially grateful as I know many aging parents are too ill to enjoy spending time with family.

Leslie’s two stories

I spoke with my friend, Leslie Farhangi of the town of North East, recently. She understands what it’s like to care for aging parents battling disease; her mom has Alzheimer’s disease as did her late father.

“My dad passed away at the end of 2022,” she said, adding that her father’s personality remained the same until the end – loving, kind, sweet. My parents regularly said “I love you” to each other. “It was not a surprise as he was almost 92; he had a particular kind of dementia. My mother is still alive. She went to assisted living and is now in memory care for Alzheimer’s and vascular dementia.”

Before going into assisted living, Farhangi and her husband brought her folks to live on their horse farm. They’d been visiting from Missouri regularly during the past 20 years every summer and for the holidays.

“The plan was always to move them here when they needed more care, but they never could make that decision. So, during the pandemic we moved them here in the spring of 2020,” said Farhangi. “They lived here full time for those two years until my dad passed away. Shortly after that my mom moved to assisted living.”

Farhangi and her husband, who works out of town during the week, converted a building on their property into a two-bedroom cottage to accommodate her parents. They moved in at the onset of the COVID-19 pandemic, when two of her three adult sons were home and able to help care for their grandparents.

Still, Farhangi said she suddenly found herself caring not just for herself and her 12 horses, three donkeys, two dogs and one cat – plus her husband and three sons when they were home – but also for her two infirm parents. One was easy-going and calm while the other was feisty and fiery, she said.

“It became kind of a full-time job. Because of the pandemic, two of my kids were living at home, so all of a sudden, I went from pretty much living alone because my husband works on Long Island during the week to having five to six people over for dinner every night and having to care for them. And they had medical and other needs, too.”

She said her father “never forgot who I was and remained sweet until the end, so caring for him was not difficult.” He also had a 24/7 live-in caregiver because he had many physical needs as well as a risk of falling. “It was a pleasure being around him.”

Caring for her mother, whom she called “a handful,” has been another story, shared Farhangi.

“Unfortunately, my mother’s dementia caused a personality change and she’s quite difficult. She had fewer physical needs but it became a mental strain to see her so often. She would berate me every single day. That’s one thing that doesn’t get talked about enough in my opinion, people hear dementia and think people are just forgetful, but that’s not always the case. Sometimes they go through quite the personality change too.”

Farhangi said while you can “know intellectually it’s the disease, not your parent, it still takes a toll. It becomes really hard to remember that this mean, nasty person in front of you is the loving, kind mother you remember.”

That behavioral change can be difficult to process; I speak from experience. While in the grips of his disease, my father experienced episodes during which he became argumentative with his nurses, often battling them when they were doing their best to save his life. Whether it was while trying to insert life-saving IVs into his veins or feeding tubes into his abdomen, my father would become combative and violent – completely atypical from the non-violent, peace-loving man I knew and loved.

Yet that’s what geriatric diseases can do, as Farhangi knows all too well. That’s why she prickles when urged to simply accept the reality of those with dementia.

“A particular pet peeve of mine is when people always say, ‘You have to go along with them and enter their world.’ I’m all for that generally, but when I’m being told how horrible I am, and that it’s because of me that my father died, it’s a delusion and that’s one that I’m not going to go along with. With my dad’s dementia, I could tell him I loved him, and he would say, ‘I love you. You’re the best daughter’ and that’s why caring for him was a pleasure,” said Farhangi. “My mom said I was the worst. My old mother, my real mother, wouldn’t mean it; the person in my mother’s body does mean it.”

Senior behavioral health

Because diseases like Alzheimer’s can alter one’s personality, Farhangi said it’s vital to beware of your loved one’s mental state. She noted Sharon Hospital has a special unit for senior behavioral health.

“What I would want the world to know, if anyone is facing this, is that they should get a geriatric psychiatry consult, because as much as someone may be difficult to deal with, they’re not happy if they’re angry and mean and everything is terrible. That’s no quality of life for them. An antidepressant helped for a while with my mom, and now she’s on stronger meds.”

The National Institute on Aging explains on nia.nih.gov how Alzheimer’s can affect behavior, citing “in addition to thinking and memory problems, people with Alzheimer’s may experience symptoms such as agitation, trouble sleeping, and hallucinations. They may wander, pace, and behave in unusual ways.” It acknowledged that such problems can make caregiving more difficult, noting “it’s important to remember that the disease, not the person with Alzheimer’s, causes these changes.”

The NIA listed several common behavioral changes in Alzheimer’s disease:
• Anxiety
• Fear, worry, or anger
• Depression or non-interest
• Hiding items or suspecting others of hiding items
• Imaging things that aren’t there
• Acting suspicious or feeling threatened for no cause
• Frequent pacing
• Unusual sexual behavior
• Wandering from home
• Hitting others
• Misunderstanding what one sees or hears
• Trouble sleeping

Its website offers information about Alzheimer’s and other geriatric ailments and tips on how to best deal with them.

Christal’s story

Christal Furphy, director of social services at Geer Village Nursing and Rehab in North Canaan, CT, understands the difficulty in learning how to become a caretaker. She knows both professionally and personally how taxing dealing with aging family members can be.

“My grandmother is adamant that she is staying home forever, but at her last hospitalization they had recommended a short-term rehab stay and she was not about it at all. They told her, ‘Then you need 24-hour care for a week.’ My dad, my uncle, and I were there, and we sorted it out,” said Furphy. “It’s tough. It was weird to be on the receiving end of it. I do my best to help families navigate these types of decisions when I’m here at Geer, but it was weird to be with my dad and uncle for the same thing.”

She continued, “Then I helped my mom with her dad, who needed to go to an assisted-living facility, to find the right placement. Even for people who see this every day, it’s really hard when it’s your own family.”

Dealing with those same issues at work and at home only seems to have fortified Furphy’s resolve to help ease the burden for others managing their loved ones’ geriatric care.

“I would say to somebody when they’re working on this planning: No one size fits all, no matter how you spin it or how you try to prepare; it’s difficult,” she said. “Yes, planning can alleviate and help with the stress, but it’s never easy. It’s a loss to get older, and it’s always hard to navigate. It’s always hard to prepare for but it’s better to have these family conversations. It’s better to be prepared.”

Plan and prepare as a family

Farhangi said it’s not only parents who should share in the preparation ahead of time; middle-age children with their own kids should also make plans, so the next generation doesn’t find itself in the same scenario.

“We’re all focused on caring for the elderly from our parents’ point of view,” said Farhangi, who scrambled to get her folks’ financial, legal, health, and living arrangements in order when they first moved in with her. “Don’t be like your parents. Organize your affairs, talk to your kids, and write down your thoughts on how to care for you if you get dementia. Assume it’s going to happen to you. Don’t repeat the same pattern.”

It’s all in the planning, advised Furphy, who said simplicity and compassion are key. “I’d say focus on comfort, ease, safety, and peace of mind rather than ‘You’re getting older and needing help.’ Really focus on spending time with them and wanting to take care of them, not just convenience and fear.”

She suggested getting basic documents in order: power of attorney topped her list, a living will was second, considering a do-not-resuscitate order is also important, and, of course, discuss wishes concerning living arrangements. Options range from apartment-style assisted living (myriad choices exist within that category; prices at Geer range from roughly $6,000-$9,000/month) to long-term care in a nursing facility (with prices roughly double that of assisted living that are often covered, at least partially, by Medicaid or private long-term insurance).

Furphy stressed that “even if nobody ever anticipates they’ll become forgetful or need that level of support, it’s really important for your loved ones to know how to act on your behalf. There can be confusion on how to act for you or to know who’s legally responsible for you. It’s so much easier to have a go-to person for those types of things. It’s also a good idea to learn about resources in your area, even if you plan to stay at home as long as possible.”

While managing elder family members can be grueling, it can also be incredibly rewarding. Furphy said as much about helping her grandparents as well as about her role as social worker at Geer. “I’m happy to be where I am, that’s for sure. It’s hard work, but it’s important.”

Farhangi likewise agreed that caring for her parents has been extremely fulfilling, regardless of whether dealing with her more easy-going late father or her more challenging and sometimes hurtful mother. “The most satisfying thing about caring for my parents has been that I could be there for them when they needed me. They were wonderful parents, and I am doing my best to return the favor,” she said.

For my part, I feel much the same. Yes, knowing that I (along with my sisters) am responsible for my mother’s welfare can be overwhelming and, sometimes, exhausting. But after what I can only describe as a fairly magical childhood, I would probably say looking after my mom is both an honor and a privilege.

Does it get frustrating at times? Absolutely. Do I have to set boundaries? Again, yes. But it’s also very rewarding. And as I move through what I’m finding to be a very personal part of my adult journey, I’m finding opportunities to learn fascinating family history while working out old wounds that had developed at random points in my relationship with my mom that I now have the opportunity to heal, before it’s too late. I think that’s part of the beauty of what happens when one’s progeny becomes one’s protector.