When I do eldercare, it’s not the crises or acute events that are the most difficult. It’s the daily slog of mundane tasks involved in helping an elder for the long run. I have no bedside manner skills. I’m just not good at it. Often I see my roles as:
- Life organizer
- Nag-o-matic
- Worrier-in-chief
- Human scrub brush
Most of the conventional wisdom for caregivers comes down to putting yourself first, making time for yourself. To a large degree, that’s a crock. Your priorities won’t come first for the present, and probably for a while.
In the last 30 years, I’ve helped elders, from my former mother-in-law, my father, my partner, to my mother, through cancer, heart attacks and bypasses, serious falls, and hip replacements. I’ve learned how to be organized (with a notebook that I tote to hospitals that has every bit of info I could possibly need), how to manage medications, and how to keep healthy (eat snacks often, trot down hospital halls, sleep as much as possible when the patient does).
Sometimes it’s the elder themselves who can determine whether caregiving is ennobling or enervating. My first experiences with acute caregiving were with my former mother-in-law and my dad. What a gift it turned out they gave me. Both were model patients despite, or maybe because of, their diagnoses with terminal cancer. They did what they were capable of and showed gratitude to all who cared for them. One of my favorite memories, when my dad could no longer walk, was my mother pushing me around in a wheelchair. We wanted to be sure she could handle it safely so that my dad wouldn’t tumble out. When I fell out at the first pass, we had a good laugh.
Caring for an uncooperative or grumpy person, however understandable their attitude, or one with whom you’ve had a problematical relationship, is very trying. Love him though I do, my sweetheart was a notoriously bad patient during three long convalescences at home. For two of these episodes, I still was working full time, so I had aides during the day and took the 12-hour night shift and the early morning hours. Not taking meds, refusing to eat what we cooked, and terrorizing the aides to the point that they quit were a few low points. I was in tears almost every day. My wise house cleaner told me, “Just go to the other room and cry, and when you’re done, go on back.”
The Daily Drag
Maybe it’s because I’m childless and didn’t have the day-to-day tribulations of childcare. I am having difficulty with the bevy of ongoing tasks involved in having an 88-year-old partner and a 92-year-old mother in my life, one with me at home and the other in a senior residence an hour away. I feel blessed that they are both doing very well. However, each month there is a need to take on more. I hear the “drip, drip,” and see the drops of tasks filling up my cup. For instance, that “executive function” they talk about, and its decline, are real. Understanding complex ideas or making logistical plans can be difficult. What to do, and when to take over? Do I ask first, or just jump in?
My mom is good about verbalizing what’s going on. “I don’t understand this letter I got. … Why is my bill like this? Is everything OK? … I’m having trouble making an appointment at the DMV. … Help, I need to do this paperwork and I’m overwhelmed.” That makes it easier for me to help. But, my sweetheart can be obstreperous, and I can have a short fuse. I have lots of mental checklists and verbal questions for him.
“Honey, we are going to the play tonight. Let’s pick a restaurant to have dinner before … no, not downtown, we won’t be able to park close enough for you to walk. … OK, the one on California Avenue. And they emailed us that the theater parking lot is closed for repaving, so I’ll need to drop you off and we’ll have to add an extra half hour of time. … Yes, that much because it could take me 20 minutes to find a parking spot. Please give me my ticket now in case I have to come in late. … Yes, we did decide on leaving by 5 PM, not 5:30, do you remember? … No? Well, we’re already behind, so please hurry. Have you got your wallet? The other ticket? Cell phone? Cane? … I told you it was chilly, you didn’t believe me. OK, go back in the house and get your jacket …” And on and on.
Final Confessions
Most of the conventional wisdom for caregivers comes down to putting yourself first, making time for yourself. To a large degree, that’s a crock. Your priorities won’t come first for the present, and probably for a while. I’ve found that accepting this alleviates some of the frustration that comes when your own expectations not being met. I just enjoy the quiet morning cup of coffee when others are asleep, and revel in any day that there wasn’t something late, forgotten, spilled, or broken.
I often feel guilty about not wanting to go out, but sometimes the exhaustion of planning overwhelms the need to have fun. I often feel guilty about my short temper, having gone to caregiver support groups and seen what other people go through, and knowing any problems I have are trivial by comparison. I often feel guilty about using my caregiving responsibilities as an excuse for not doing something I either “should” be doing or know would make me feel better if I did it.
But I find it very challenging not to keep a mental and physical buffer, saving time and energy for the inevitable surprises and minor daily disasters. I’m working on all this to be a more compassionate, patient person, to take consolation that someone has been made happier and more comfortable because of my caregiving.
MarianI have recently retired from a marketing and technical writing and editing career and am thoroughly enjoying writing for myself and others.
Marian, you show what a good life organizer you are just by the way you wrote this story. I am so sorry for all the eldercare you have had to do, and still have to do, but you do it with grace and intelligence. Thank you for your confessions. I am sure you are as compassionate and patient as it is possible to be, and certainly much more so than I would be in your shoes. You are amazing, and I hope your mother and your sweetheart appreciate you!
Thank you, Suzy. It’s comforting to know a lot of in this age group have been through this process, and it can be a bumpy ride no matter how much you care about the person. These experiences do help you grow!
Oh, Marian, “I’m just not good at it”? How I love your honesty, and how I relate to it! Your house cleaner was wise, as are you . . . you’ve given me some good ideas for the next time I find myself in a caregiving situation and determined to do better. Frankly, I think you’re wise to maintain that buffer — you know what you need most. And yes, that morning cup of coffee can be everything!
It’s wonderful to have your understanding and support, Barbara. I really identified with your situation as well because my relationship with my mother has been extremely complicated (her frequent comments about me being like my father were NOT compliments). However, in recent years she has shown a lot of appreciation, which is fulfilling and energizing.
Brava to you Marian, your loving commitment to those you’ve cared for and are still caring for comes through and your anxieties are normal and are surely unwarranted.
Enjoy your life with your sweetheart,
I’m sure he’s loves and appreciates you to the moon!
Thank you, Dana, and it’s good to remind myself that I am loved and appreciated. I get good comments from his sister and his kids, which is very encouraging.
Marian, you are way too hard on yourself! You have had a heavy burden of caregiving and by your own account, have done a brilliant job. You’ve kept track, organized everything, gotten people to doctor appointments, looked after medication, even taken a dry run in the wheel chair.
Caring for people who don’t want to be cared for isn’t easy. Your cleaning lady gave you good advise. My younger child (who ultimately had so many diagnoses), could throw a temper tantrum like nobody’s business, going on for an hour. I would tell myself that I could stand anything for an hour and break the day down, hour at a time. These are the tricks we must play to get through our lives. Going into another room to have a good cry is a totally acceptable way to relieve your tension. Do what you must to remain intact. Don’t sell yourself short. You are a great caregiver.
I love your hour-by-hour trick, Betsy, that’s a great technique. We all can tell ourselves that the next hour will be different (maybe even better), and so can carry on.
Marian, you are amazingly good at the difficult role of eldercare. Your notebook technique is one I employ whenever medical care is needed for a loved one. When my parents were failing in the last years of their lives, I kept a binder filled with doctors’ notes, to-do lists, important documents, etc. It was the only way to for me to stay sane. I really understand your life organizer approach, and I relate to the way you describe your role as nagger and worrier. Those are qualities we share. I agree that, while everyone recommends “me time” for caregivers, it’s not easy to do without a heavy dose of guilt and the “have-to-do” list that runs through your mind. You may feel short tempered at times, but your compassion, patience, and empathy for those you are helping exceeds what most people could do. No one is “good at this.” All we can do is the best we can each day and forgive our lapses and start fresh the next day. Wonderful and important story.
Laurie, it’s great to be reminded that no one is “good” at this. I think there is some social conditioning that prompts people, especially women, to think we need to be saintly. Good reminder that we all are human.