I was ill prepared for my mother’s decline. She lived alone until she was 96 and refused to let me get her home health care help. My husband and I had done everything we could so she could live comfortably at home.
And then she fell.
It wasn’t the first time, or the last time, but it was the fall that changed everything. Statistics show one fourth of Americans over 65 fall each year and the results can be devastating and life changing. Women, often with kids and lives of their own, become the primary caregivers and decision-makers when a parent has an accident.
My mom―so strong-minded, stubborn and commanding―could no longer walk on her own or care for herself. After 6 weeks in rehab I brought her back to her home and had to face a new reality: She could no longer live alone. Ambulettes to doctor appointments, a stair lift to get her up to her bedroom, and 24 hour live-in care were her new life.
I promised her long ago that I would never put her in a nursing home, and I nearly quite ran myself into the ground that first year trying to keep my word. But over time, once I got the right caregiving team in place, I was able to deal with the day-to-day running of her life as the aids in her home cared for her needs and kept her safe.
We made it through the first two-plus years and she turned 99 years old in March. I survived the role reversal and trauma of the crisis her fall created in our family system. Here are some of the things I learned and discovered trying to navigate through eldercare.
1. It’s like going to a new country. You will find yourself in terrain never traversed before. It is especially hard when you are new at caregiving — as many of us are — and perhaps more accustom to your parent taking care of your needs. It may be extremely uncomfortable, painful, and traumatic — for all involved. And it is not a country you really every wanted to be in but there you are. You must adjust to the language and customs of that world, and a new way of being in relationship to your parent.
2. The workload is enormous. Caring for an elderly parent becomes a second job — or a third, or fourth job if you have a job, a family, kids, and other responsibilities as most of us do. Or it is a first job when you jump in to deal with a crisis and then have a hard time getting out and back to your life as you knew it. People say the parent becomes the child. But this nothing like caring for a child. This is caring for a full-sized person who has a life, a personality (sometimes a really strong one!) and the needs of an adult. This person is not as easy to lift as a child. Caring for an aging parent involves caring for an entire life—dealing with their bills, banking, medical care, insurance, home care, end-of-life care, managing the staff in their home or dealing with a facility.
3. One person usually does the lion’s share. A good friend of mine told me that when her mom became less capable, she and her two siblings all moved permanently to Florida to care for her with their respective mates. “It takes three of us,” she said. Sadly, most families cannot or do not pool together to share the workload. The person closest, and most able or willing, often ends up with it by default. It can tear families apart so try to find a way people can contribute in a way they are best able. And do what you can to avoid resentments because when your parent is gone, your siblings are all you got. (That is not to say the main caregiver will not get resentful sometimes. We have to honor that feeling, too, rather than stuff it down).
4. Fear that a parent will die on your watch is overwhelming. Most of us are terrified a parent will die, under normal life circumstance. When that person is under your care and you are responsible for health decisions, it can be very scary. Especially if you are caring for that person in their home or your home. Calls have to be made to experts, research on state laws have to be conducted, and you absolutely have to know your mom or dad’s final wishes. The natural thing to do is call an ambulance if someone seems sick, dizzy, weak, or appears to be having a stroke or heart attack. Or has had an episode that has rendered them unconscious. But what if your parent has a health directive of DNR (Do Not Resuscitate) under any circumstance. How can you not call an ambulance? Most of us will instinctively react by doing all we can to keep our parents alive, but that may not always be their final wish. One doctor I know told me her mother died in her arms, at home, in the throes of a cardiac event. She said it took every ounce of strength for her not to try to resuscitate, but she had to follow her mom’s directive, just as she would have if her mom was hospitalized.
5. Anticipatory grief can grip you. When a parent becomes injured or too sick to care for themselves, it’s a shock. The worry that a parent will die can be overwhelming, especially if you are called to prepare for it medically and logistically. Anticipatory grief lives beneath the surface and is the grief over what is to come. It can make you deeply sad and cause depression. We may not even know what’s causing it because we think we have nothing to grieve over if a parent is still with us. It is best to recognize it, address feelings and fears, and have a good cry (on a regular basis if need be). Seek professional help as needed. The anticipation of possibly losing a parent can be overwhelming and sometimes unbearable.
6. You are nearing the end of a road long traveled. The most awful revelation is that your parent’s life is fading, coming to a close, and that is a hard thing to let in. You’ve known that person longer than anyone in your life and whether the relationship has been wonderful or seriously flawed, this has an impact on adult children. Even if they are not in the final stages of life, everything has changed and they are closer than ever before. It is a little surreal when it sets in that the final chapter is near (or nearer) and, again, many emotions may surface. Sometimes it makes people regress and feel like helpless five year olds again. It is always best to stay aware of feelings that come along with this new experience and to make sure you have emotional support.
7. When you find good home care attendants honor them. The person caring for your parents becomes one of the most important people in his or her life. And this person is integral to every day as well as every emergency. This person becomes like family. They are family, and often more involved than any other family member. A good, professional home care attendant who has a good work ethic, and realizes her or his main and only job in your parents’ home is to care for that person, is key to peace of mind for you and your family. Thank them regularly.
Authors note: My mom has been blessed a steely determination to outlive the rest of us. It turns out that good care at home has kept her reasonably healthy and happy. She’s weaker, but she’s got a lot to live for: 12 grandchildren,19 great grandchildren and her first great-great grand child on the way. Friends still come and visit. She can no longer go out, so I’ve have to bring all the medical and nursing services into her home, but she keeps in touch with the world by phone. My husband and I still have to run it all (he is constantly fixing things in the house, replacing things and running around shopping for my mom) but we’ve all become more accustom to the new normal. Most significantly, we are all planning her 100th birthday party in March. It’s not easy to watch her shrink into a tiny, frail little lady but she still has all her wits about her, with a sharp mind and good sense of humor. I have tried to switch from constant worry and stress to gratitude at having my mom for so long.
-Laurie Sue Brockway
Have you learned a special lesson while caring for an aging or ailing parent?