If we get lucky and then live long lives, that often means extra time to mend relationships before it’s too late, no matter how frayed.
It’s also the time for many of us to start managing the care of our parents and that often means putting whatever issues you have with them on hold as we take over management of their lives. This may entail making housing arrangements if they cannot live independently without assistance. Most want to age in place which in elder care parlance means staying in their homes and hiring someone to care for them if affordable. If not, we often need to decide on which family member might step in.
Whether they age at home with us as the lead caregiver, which is exhausting emotionally and physically but often a necessity financially if we can’t afford or don’t want aides, assisted living or a nursing home, the burden falls on us.
Most often, it falls on the shoulders of the daughter in the family or the adult child who lives closest. This is one job where the hours can be indefinite, there is no training, the pay sucks (what pay?), and, at times, the payoff is questionable.
This role can be stifling. Our typical lives and hard-achieved independence are suddenly compromised. We’re angry at times and conflicted about our feelings. These revelations have come out in sessions with our much-needed expensive therapists as we babble in stream-of-consciousness about the vicissitudes of parenting our parents. It really isn’t anything our parents did. They just got old. It’s sad watching them decline with our front-row seats.
We know nothing will ever be like it was before. Who knew when they once changed our diapers that one day, we’d be changing theirs? They once cajoled us into eating commercially pureed baby food in a jar and now we’re begging them to eat the same soft food slop—eggs, Jell-O, applesauce and more. When they talked to us about managing our money, who knew that we’d be managing theirs along with dispensing their meds, bathing them, preparing meals and a whole list of duties that go along with caring for a senior. This is not exactly what we thought we had signed up for in our 50s, 60s and 70s.
But as we look back, we realize we’ve had some wonderful times with our parents. It’s important to bear in mind that we share so much--DNA, history, family, love, and typically a lot of angst after both generations have lived so long.
Also, we’ve come to realize everyone’s family is dysfunctional in some way, and sadly, caring for our parents as they age exacerbates that dysfunction. It requires Herculean patience as they repeat themselves, can’t hear “What, what did you say?” and forget. “I never said that!” becomes a frequent refrain on their part.
All this also requires inordinate attention as they revert to 2-year-old behavior when their cognitive skills decline. They beg us, “If I eat two bites of my meatloaf, may I have a cookie?” They also cost themselves and us gobs of money (which they may no longer have) to help care for them. Some of us feel we’re single handedly supporting Jeff Bezos as we order dozens of Depends or other brands of diapers for the typical problem of incontinence. Add to that bottles of Ensure, soft foods for fewer teeth and sweeter foods as many crave sugar.
Both of us have played the caregiver role to our mothers but fortunately have been able to afford professional assistance. Margaret’s mother lived independently in a senior community with a few hours of daily professional assistance starting after her father died when her mother was close to 90. It still meant Margaret had to manage the caregiver and field the dozens of calls she received each day from the aid, help dispense pills, drive to doctor’s visits, make sure the caregiver managed her appointments, fed her properly, interacted with her socially and so much more. It also included almost daily visits to make sure she was being cared for properly and getting the attention she needed and deserved.
When her mother fell at age 91, she went to rehab in an extended care facility. There she refused to cooperate with the staff to do PT, OT and talk therapy with a social worker to alleviate her depression. She would shut down, yell or refuse to do what was asked of her. One time in a moment of frustration, she threw a walker at the caregiver when she tried to get her mother out of bed to take a walk down the hall. She wouldn’t participate in any group activities and would only take meals in her room alone.
As she declined, it meant a choice of going back to independent living with a caregiver 24/7, choosing assisted living or staying in extended care. She was in such bad shape at that point and needed enough help that we opted for extended care with caregiver assistance a few hours during the day. The guilt of putting her into a nursing home was enormous and in retrospect, we wish we had found her a small apartment where she could have lived with 24/7 help.
Barbara’s mother—who just turned 100—is still living in her NYC apartment with 12 hours of professional care during the day throughout the week. Barbara comes in town from her home in upstate New York, Monday through Friday to care for her at night. Barbara’s sleep is interrupted as her mother moans and groans in pain and calls out to Barbara to help her to the bathroom. In addition, the clunk, clunk, clunk of her mother’s walker on the wood floor when she goes and sits at the dining room table—even in the dark to wait for a meal, disrupts Barbara’s sleep.
On weekends, Barbara goes home to decompress and has a caregiver on duty 24/7. Barbara can’t wait for her weekend sabbaticals and dreads returning come Mondays, but she does because she made a promise to her father and she knows how much her mother waits for her return.
Here’s more of this reality and our lessons learned:
- Put on your armor because you’re going into battle and the siege can be long. Some days the war in Afghanistan pales by comparison. Caveat: Taking on this responsibility tends to cause us to exaggerate.
- Forget sleep and a normal workday. You will get calls any hour of the day or night from the parent or the professional help and often multiple times a day, as you become the CEO of your parent’s care--chef or grocery shopper, diaper buyer, medical supervisor, pill dispenser and boss of them and any help you hire.
- Forget gratitude. You may get crumbs (and some in the bedsheets, too) if you’re lucky and your loved one remembers it was you who’s juggling all these roles rather than some dutiful stranger.
- Forget kindness. Barbara’s had to deal with bouts of anger, screaming— “Get out! I don’t want you here” and worse. She’ll often ask the caregiver if she’s around since her mother loves bossing the kind aides, telling them, “I’m the boss, not you!”
- Well-meaning friends may remind you how lucky you are and not to take anything said too personally. Here we pause to remind our friends of some of our favorite conversations, many of which focus on food. Some are poignant, many are funny and sound as if they’re on a loop as we sometimes laugh at the absurdity of this parent-child role reversal.
Here is a sample of some of those conversations.
Parent: Where is my cookie? I want a cookie.
Daughter: You already had one mother.
Mother: No, I did not! I want a cookie. You are not the boss of me.
Enter Medicare nurse.
Mother to nurse: Get out. Leave me alone.
One minute later she’s all chirpy and sweet as she bellows: Is my breakfast ready?
Daughter thinks to herself: Is this a hotel or restaurant? I’m off duty. She should pay me for overtime.
Daughter: It’s time for lunch.
Mother: I want red Jell-O, a bagel and a cookie.
Daughter: How about something with protein before the Jell-O? You know it’s important to eat right to stay healthy
Mother: NO, red Jell-O now. (pounds her fist.) I’m the boss and a very old lady.
Daughter: You can have it after you eat the quiche I prepared.
Mother: You’re mean, mean, mean. You used to be such a nice little girl. Why don’t you get out? Nobody invited you here. But first give me my red Jell-O. And then she salutes her daughter.
Mother: I can’t find my wallet. I need my credit card. You or Celeste must have taken it.
Daughter: No one took your wallet. It’s here somewhere. You probably misplaced it when you were going through all your papers and other stuff.
Mother: One of you took it and I want you to give it back right now. You’re upsetting me.
Daughter: I’ll help you look for it when I have time. I’m sure it’s around. Nobody took it.
Mother: Nobody wants you here. But I want my wallet NOW!
Daughter: Please let’s be patient.
Mother: Why don’t you just shut up?
Ten minutes later she is staring at you with a big smile on her face and says: “You are so talented, and I love you so much.”
11 Essentials to get you Through this Phase
- Patience—all that you can muster and pick your battles. Also set boundaries about the way they talk to you and order you about, what they can do and not do and what they can eat and when. Margaret’s mother was addicted to the Home Shopping Network and kept calling to order mostly cooking items (she never cooked) and face creams to erase wrinkles (oh, sure). Talking to her about it did no good, so Margaret called the company and told them to refuse to take her credit card. Her mother was furious. She also wanted to eat only candy. That wasn’t okay obviously, and when the caregiver or Margaret were out of earshot, her mother would call the pharmacy (which delivered) and ask them to throw in candy bars along with her prescriptions. She would then insist on opening the bags and would hide the candy in her drawers and under the mattress. What a mess that was!
- Humor—stuff might not seem funny in the moment but in retrospect, it can be.
- Take breaks. You need to veer from the routine with dinners out, short vacations, whatever lifts your spirit and lets you recharge. Margaret would go visit her children; Barbara visits her grandchildren and plans painting retreats.
- Pamper yourself. Take a walk, a manicure or pedicure or an exercise class, even buy those shoes you’ve dreamt about.
- Encourage as many people to visit. Tell them they don’t have to stay long, even an hour periodically is a gift. And they don’t need to bring anything with them.
- Engage in pleasant tasks together. That can mean spending time looking over photos from the past, recalling fun times like family trips, listening to music or reading.
- Exercise together. For an aging parent that can mean walking a hallway together or even in an apartment. Getting out of bed and moving can be beneficial for circulation and spirits.
- Get your parent outside to enjoy nature. Nature is known to offer physical and emotional boosts to their spirits. It revs up the serotonins, according to scientific evidence.
- Hire as much help as you—and they--can possibly afford. Now is not the time to cut back or be cheap.
- Stockpile “happy pills” not for the parent but for you. First, if you become dispirited about what you are doing, seek help from a social worker or therapist. You might also need antidepressants or your favorite candy, cupcakes, wine, whatever. The adage is true: put on your oxygen mask first to take care of someone well.
- Count your blessings. No matter how tortuous these times can be, they also are a gift for you to remember happy times when you can and share memories. Do it now rather than later when they are gone.