Caregiving for a terminally ill person at home and keeping your loved ones abreast of the latest developments can be a challenging feat but, fear not, there are some simple ways to help keep the lines of communication open and free of mayhem.
When someone is newly diagnosed with a terminal illness or their existing condition becomes more resource intensive, it can be overwhelming and stressful for caregivers to coordinate everything that is happening between the physical care, the appointments, the medications, and the equipment needs all the while also tending to their own self-care and working through, for themselves, what is happening to their loved one.
On top of that, family and friends often want to check in regularly with the caregiver to find out how the person is doing, or when they could visit, or what they could do to help, or when they can drop off some food. It is a normal human response to want to help and it is wonderful if you do have a community that is able to offer their support, but all of this is a lot to manage.
Finding ways to streamline communications helps. In practical terms, it comes down to keeping everyone up to date with the latest information while handling incoming offers of help.
How can you meet the needs without having to repeat the same message all the time
or onset chaos and confusion or missing important details?
In this article, I offer some tips on setting up a communication network with your family and friends as well as what information to provide to maximize the medium and minimize repetition.
Practical First Step
When doable, it is very useful to assign a close friend or family member the task of coordinating your communications to funnel the influx as well as the output of information through one person. It is more effective to have a coordinator who has organizational skills to facilitate the process. This relieves the caregiver of having to keep tract of several threads, instead s/h/they have one person to contact who can then forward the necessary information to the rest of your community. This helps eliminate the possibility of details being lost or misunderstood.
Special Note on Caregiver Self-Care
Caregiver burnout is very real. No matter the length of the illness, it is wise to schedule regular self-care. Start as early on as possible - even if you don’t think you need it - and plan a respite at regular intervals as caregiving is demanding work, on all levels, not just physical. This gives the caregiver the much-needed time and space to process what is happening emotionally and spiritually as well as get some resting time. It also helps prepare others who could be supporting as death approaches since they are more “in the know” of what to do or not do, and the sick person is more familiar with them. As the sick person gets closer to the end of their life, often their circle of people gets smaller, therefore, if you want to introduce other caregivers it would probably be easier, for the dying person, to do so earlier on.
The mistake caregivers often make is that they don’t start scheduling respite time early on because they don’t think it is necessary, “I feel fine, I don’t need it. I got this.” But then the caregiver is taken seemingly unaware - the illness progresses faster than they expected, or the demands increase without really noticing the level of stress they are under, or they get used to the intensity and their “new normal” isn’t problematic until it is.
S/h/they often feel unable to take time for themselves. Sometimes it is because they feel they should be there when the person dies (or in case there is a health crisis) so they don’t want to go out, just in case. Sometimes, they feel they are essential to the process because a network was not set up to step in when the need arose. This is just to name a couple reasons.
Caregiving of a terminally ill person is often experienced as a marathon rather than a sprint, therefore, preparations early on are necessary to assure the possibility of having the stamina longer-term.
If you need assistance to help you set up self-care or a network of support,
contact me and I’ll be glad to assist you.
Messaging Syspextems:
1. Group email
The coordinator can gather the email addresses and create a group email distribution list. On a regular basis, s/h/they can write up the email update, send it to a group then field all the questions and responses.
Suggestions of the type of information you could share in the email:
Current condition and what has developed since the last email
Any tasks that you need help with e.g. dog walking, groceries, meals, laundry, medication pick up, etc.
Types of meals or treats welcomed and any food allergies/sensitivities
Visiting times available and any restrictions – what to do or not do while visiting
Respite needs – volunteer caregiver needed, date/time
Advantages:
Most people have easy access and are familiar with email both on their personal computer as well as their phone
Everyone gets the same message and can refer to it later, if needed, instead of calling
People can feel comfortable to send their questions and requests for clarifications any time of the day knowing they are not disturbing the caregiver or the sick individual
Caregiver only has one person to connect with (the coordinator)
Disadvantages:
Time to set up the distribution list
Keeping track of tasks/needs – hence, the much-needed organization skills!
Time to write up the email
Anyone who doesn’t have access to the internet or email is at a disadvantage
Overall, in the practicality of the real world, I have found the advantages outweigh the disadvantages because so many people are familiar with email.
The success of an email messaging system will depend on the coordinator’s ability to keep track of tasks/needs and sending clear updates.
2. Online Care Calendars
Care calendars are interactive tools that are shared with a group of people, allowing the caregiver to list specific needs for certain days and times and allowing members to sign up for tasks on that same schedule in live time.
These calendars are quite practical. The coordinator can build and update it that way the caregiver doesn’t have another layer of detail to manage.
These calendars have multiple purposes such as delegating tasks, booking visits, sending email reminders, news updates, maps/driving directions, personalized cards, and sharing pictures, are just a few examples of their possibilities. A simple internet search will reveal several care calendars sites, some of which are free, others are offered by donation, and some have a set fee.
Advantages:
Depending on your needs, this could be a “one stop shop” type of site
Many aspects of communication can be addressed such as email reminders and updates
Ability to schedule tasks and modify as needed
People with accounts can access the site and see what is needed, what is scheduled and any updates
Disadvantages:
Time to set up calendar, tasks, community accounts
Everyone involved must have an account, therefore, a certain level of tech know-how is necessary
How successful this option is will depend on the coordinator updating the site regularly and the level of tech know-how of the folks using it.
3. Telephone tree
For people in your community who do not have access to email, set up a volunteer (one who already receives the email updates or accesses the care calendar) who can then initiate a telephone tree where person A phones person B on the list then B phones C and so on down the list and share the details and updates.
Advantage:
This option can be a lifeline for folks who don’t have access or are unable to use email but wish to stay connected
Disadvantages:
There is a possibility of information being missed, creating frustration or confusion
Risk of the telephone tree being left out of the loop especially when there are increased stresses to attend to
4. Social media
Social media may be a useful tool if your coordinator is familiar with the uses and your network is also connected to the same platform.
Advantages:
Depending on the platform, you may be able to create a closed group
It may be useful to have the ability to send quick notifications
Disadvantages:
Folks need an account and familiarity with the uses, preferably on the same platform
Coordinator must be familiar with creating closed groups to keep information from being public
Assess your comfort level with the type of information being shared, how the community is sharing (with whom), as well as the security of the platform used
Work with me
If you want assistance to organize your communication network, schedule an appointment with me and we can discuss your needs and what support would be useful for you.
Debbie Charbonneau
613-619-1969