Living with dying: Summertime and the living is… easy?

Editor’s note: This column is provided by the End of Life Care Partnership that has been operating here in Addison County for more than eight years. Its mission is “to create a framework for our organizations to collaborate on our common goal of providing education about dying, death and options for care.”
This column will work if we get questions from you, our readers. We want to hear from you, what is on your mind and heart regarding this challenging issue that each of us will need to address in our lives? Send your questions to [email protected].
Summer is a precious time full of anticipation for family events, travel and time to enjoy spontaneous fun. While serious illness can raise particular challenges to carefree living and travel, taking the time and effort to develop a plan for summer and travel can help minimize stress and maximize enjoyment for all.
Before starting on your trip, talk openly to your primary and specialty providers about summer plans. Basic items to have up to date and with you as you travel include:
•  a list of medical diagnoses and providers (along with contact information).
•  medication lists.
•  copies of Advance Care Planning documents.
Explore how medical conditions will be affected. Ask if it is reasonably safe to travel? What illness-related issues are likely to arise? Is it possible to shift the schedule for tests, procedures or treatments so that they do not interfere with special events?
Even with a careful plan, unexpected things can happen. If you will be traveling away from your medical home, prepare a list of available emergency services in your area of travel:
•        Where is the local emergency room or urgent care center?
•        If you will be near family, do they have regular medical providers available to offer urgently needed medical help or advice?
Consider modifying plans. If medical needs are very high, or if the stress of travel is too much for either the patient or caregiver, consider moving the location of a special event closer to your home. If a patient requires frequent medical care, it may be time to consider moving up the date of a special event. It may feel emotionally difficult to ask for these accommodations, but finding solutions to health challenges are what family, loved ones, and your medical team are there for.
I’ve had families I work with celebrate birthdays, anniversaries and even weddings months ahead of schedule. If energy and time allow, the original date can still be celebrated as well. Who does not like an “extra” party? Do not feel limited by tradition or artificial timelines. I’ve been blessed to attend impromptu weddings in the Intensive Care Unit to assure a grandmother could see her first grandchild married. When my own mother-in-law was terminally ill and living far away, we moved up our Christmas celebration to Thanksgiving and had a wonderful family time together while she was able to enjoy our company.
— Dr. Diana Barnard
“My mother is on Hospice and I’m the main caregiver for her at home. Our extended family is planning a reunion out of state and I’d love to go, but am feeling guilty about leaving. Besides, who would be available to Mom while I’m gone?”
When caring for a loved-one with a serious illness, daily logistical questions often take center stage. It’s easy to forget the emotional strain of prolonged challenges on all involved. Emotions can run even higher when upcoming travel plans challenge the comfort of daily routines. It’s tempting to simply cancel or postpone events. However, with illnesses and their unclear timelines, postponing a respite trip or family gathering can easily contribute to feelings of burnout and resentment over missed opportunities to experience joy.
Having been a long-term caregiver myself, I know how easy it is to pass up on breaks that take us away from our loved-one who needs care. Feelings such as “guilt of abandoning,” “no one provides better care than I do,” or “running out of gas” are normal.
In my own journey I realized I didn’t have to — and in certain situations could not — do it all alone. Truth is, we ALL deserve support, not only the patient. It’s the proverbial “oxygen mask” in the airplane safety instructions, that teaches us self-care in order to better assist others.
The Hospice team’s strength is to assist each person in their unique needs. I can only encourage you to speak to your team about upcoming travel needs and explore all available options and to ultimately follow your heart in your final decision.
— Dorothea Langevin
“I finally have vacation time, but my Dad is 95 and lives alone and needs someone to be with him. My siblings live cross-country and are too busy to visit. Who do I call?”
It is so important for caregivers to be able to get respite from their responsibilities. If all possibilities of other family members or friends stepping in are exhausted, there are resources available in Addison County. There are individuals and agencies who are trained to provide respite opportunities. The first place to go for information is your Medical Provider (primary and specialty care) – they are the gatekeepers to your care. Our partnership is happy to help provide information if you still need assistance – ACHHH: 388-7259 or HVS: 388-4111.
Sponsored by the Living with Dying — An Addison County Partnership

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