Bridging the Distance
A “natural bridge” in SE Utah. Connectiveness with each other and our world opens insights into the disease as well as our physical world.
Carey - Visits, phone calls, texts and emails
We decided that this topic arises frequently enough for those with a terminal illness, and their families (as well as their friends and family) that it would be worthwhile to address. As we have noted throughout our posting, one size does not fit all.
Firstly, once one has a terminal illness, expect to be treated differently by others. Mainly this is an awkwardness that forces many to avoid or have only abbreviated contact. And much of this stems from a desire on their part to not pester or inconvenience the ill and their family. Unfortunately it also results in lost opportunity. Even now, some 3 years after my diagnosis I still receive e-mails from friends, grads and colleagues that start off with “I’ve meant to send this so many times, but the timing never seemed right” (or something similar). It’s awkward to communicate with a dying person, and more-so if you care about them. It is also an important thing to do. Consider focusing on what’s going on in your and your family’s life. I’d much rather hear about that than have to relate my travails.
So these are a few things to consider in this fine balance.
Just as for communicating the initial diagnostic news and navigating its aftermath, having one or two people to “gatekeep” things over the final portion of the journey is important, particularly when it comes to visitors. While visits are welcomed, they can be exhausting to both immediate family as well as the patient. Both may overextend physically and emotionally. This is balanced by the joy and appreciation of a face to face visit.
A few things to consider about visits:
Coordinate with the “gatekeeper” about duration and expectations. At minimum the immediate family will have additional work (housecleaning, restocking kitchen items, etc.). This can be balanced by doing grocery shopping and “kitchen take-over” and limiting shared meals to once each day. Robin has successfully used spreadsheets to assign these tasks. And guests get to clean up too. Sorry - we no longer entertain but focus on the visit.
Coordinate with the gatekeeper about physical limitations that the patient may have. They may be sleeping in late, taking long naps, or going to bed early. Expecting their undivided attention all day may foster overextension. So when the gatekeeper says “it’s time”, then it’s time.
Develop some plans/itinerary that allow you to leave for portions of the day to allow everyone to rest and recover.
Be flexible. New treatments or diagnostics may cause unanticipated trips to providers, or leave the patient with low energy. Chemo brain is real, and it hurts to think sometimes. We have always worried that folks who fly out for a visit may end up being here during one of those “down periods” and feel slighted.
Please consider rescheduling your visit if you or family members have been ill and not fully recovered. Anyone who is sick or has a sick family member will be required to wear a mask indoors and eat/drink outdoors.
But again, let’s not make this too onerous. If time and logistics and the patient’s condition are not conducive for an in person visit, the gatekeeper will tell you. Overall, nothing is better than the in person visit.
If the logistics of an in person visit don’t work - go with “Plan B, C, D, etc.” . While Zoom has been a terrific way to stay connected with groups of friends and family, it mandates a set time to be “up and ready”. Be understanding if the patient doesn’t have the energy. But I have loved my zoom calls with my old camping group from the 1970’s and 1980’s, our friends in Cape Breton Nova Scotia, and colleagues/friends from the recent and more distant past.
Texts and phone calls: We often expect a quick reply to these. Please don’t. It all depends on what’s happening that day and one’s energy level when these come in. And the gatekeeper can screen some of these to assure that time critical ones aren’t missed.
E-mails: as above, please be patient. Replies are likely going to lag, sometimes for weeks. Even if you don’t get a reply right away, these are read and appreciated. Photos and humor are always welcomed.
Nicole -
When someone is ill or dying and family and friends are far away, the distance seems cruel. Our ability to see each other, connect and be present for others is severely challenged. Ironically, the pandemic created the same situation for those who live next door. Living far away is complicated because family and friends want to be close but have to choose their time from jobs, spend money to travel and are unsure whether they should “come now” or save time for the very end of life and after death ceremonies. There is no right answer just as there is no similar journey but I believe in living without regrets. Creating time together sooner rather than waiting until later is important. Often in the final days and weeks of life, a person doesn’t have the energy to do things or be present in the same way. So spending time together before hitting that stage can be rewarding. As physical decline starts the chance to be together shifts to sitting quietly and sharing thoughts which has a beauty of it’s own. Tapping into things you enjoyed together before getting sick is important because while we all need to talk more about our dying journey and how it makes us feel, we also need to feel “normal” again. Too often, discussions of treatment and side effects takes over our life and we need a reminder to be just ourselves together again. A balance of talking about it and not talking about it. Declaring “Illness free zone for the next 15, 30, or 60 min” can be a useful way to force our minds away from the current situation and back into what connects us as family and friends.
A wise friend, Tom, was dying from COPD in an emergency room in Wisconsin and I was two time zones away. Luckily, a friend called me from his bedside and I asked him to put the phone up to Tom’s ear so I could talk with him. Tom couldn’t speak because his severe shortness of breath and I wasn’t sure if he could even hear me. I didn’t know what his level of awareness was at that moment. Plunging ahead tearfully, I told him how much he meant to me as a friend and how grateful I was for all of his advice and help through the years. After telling him I would miss him, I also told him I understood that it was his time to go and gave him permission. It felt awkward and sad talking into what felt like an empty phone. I wasn’t sure if I should do it but I knew I would regret not telling him these things if I didn’t try. Months after he died, the friend with him told me that when I was talking into the phone to Tom, he began to smile. Knowing that my friend had heard my words and felt my love and gratitude from far away gave me peace.
Carey has an army of friends and family living at a distance from him. The web that his emergency medicine colleagues and graduates weave around him from positions across the country and world is astounding. The emails, calls, texts and visits to his retirement home in Idaho have given him a reason to continue living. For those who haven’t known what to say, it is ok to do it now. In the comment section below or in a private way. After he dies, it is ok to continue those words coming to Robin, Tyler and Kelsey. Knowing that others also loved the person we love helps sustain us in our grief.
Milky Way at moonrise. Bayview ID (deck shot). Our “bridge” to the cosmos.
Robin – Communication: What to say when you don’t know what to say
Many people avoid the dying because they don’t know what to say. My advice is not to treat them any differently than you would if you didn’t know they were dying. The patient and the family would prefer not to focus on the illness and impending death all of the time. Tell us about what you and your family are doing, reminisce about past trips, meals, or events and future plans. Don’t be afraid to ask questions after reading updates on CaringBridge or whatever platform the family has chosen for health updates. Please know that emails, texts, letters and messages are read or listened to and appreciated even if there is no response for days or weeks.
I have always felt like I am intruding with visits and phone calls when someone is ill but being on the other side, it is not intrusive as long as the family feels like they can say not right now. A text or email to ask if a good time for a visit or call might be today at 3:30 or tomorrow at 10am or should I check back next week and see how you are doing? Phrased with specific dates/times only requires a single reply rather than back and forth to coordinate schedules. Don’t be offended if the answer is no visits or calls right now as it is not a reflection of you or your relationship but the burden on the patient and family who might not want to “entertain”. We have always said the more the merrier when entertaining, but lately smaller gatherings are more meaningful and easier to manage without getting exhausted.
People often feel better if they can do something and most offer “let me know if I can do anything”. Sometimes family members and patients have difficulty thinking of things they might need so offering something specific might be the easiest way to help. If you are available to drive to appointments, cook meals, walk the dog, clean the house, run errands, grocery shop, relieve the caregiver for an afternoon, sit and chat, babysit, drive the kids to school, weed the garden, wait for the cable guy, mow the grass, etc. offer a specific day/time and activity that you want to do.
Tyler - Staying Connected
One of the most difficult parts of the last few years, for me, has been being far away. When a loved one gets a diagnosis like this, all you want to do is spend time with them. Living on an island in the middle of the Pacific Ocean makes that part a bit tricky, especially in the last year with the COVID-19 pandemic. This distance has brought on feelings of guilt, helplessness, and anxiety. When do I need to come home? Will this be the last time I ever see him? How can I help when I’m so far away? How can I continue on with my normal life when my dad is thousands of miles away dying? It’s rough to say the least.
For the most part, we’ve handled the separation fairly well. My partner and I are fortunate enough to have supportive, flexible jobs and financial positions that we could visit every few months, making the separation between visits a little more manageable. Of course, phone calls kept us connected with the day-to-day, but what about spending quality time together?
At the beginning of the COVID-19 pandemic we tried Zoom “Happy Hours,” but quickly found that with everyone in lock down and not much happening, conversations quickly turned to COVID, politics, and current events. Not the most stress relieving topics… Eventually we turned this “Happy Hour” into a virtual game night and were able to spend time together without the pressure of coming up with something to talk about. When I discovered Dungeons and Dragons (and my Mother ran with it), this amped up the engagement, the laughs, and gave us something to look forward to together every week.
While embarking on a quest in the fantasy world of Dungeons and Dragons may not be something that you are particularly interested in, I highly recommend finding something engaging that allows for quality family time with a little distraction. While talking about treatments and how folks are doing is important, taking some time for a little fun is also important.
Virtual activities to try together:
Try a new recipe. Cook something “together” virtually.
Go on a walk together. Take your family on a virtual tour of your neighborhood or local park.
Watch a movie or read a book together.
Another natural bridge located in Arches National Park