Caregiving at Home - Communication with the Care Team
Caregiving for a terminally ill person at home and keeping the health care providers involved abreast of what is happening can be a trying process for the best of us, but there are some straightforward ways to keep the lines of communication clear and concise.
Being cared for at home is often the desired choice to going to the hospital or a hospice. Making it a reality can be a challenge considering the resources required at home to tend to someone who is terminally ill. For those who can choose this option, clear communication plays a key part in making this situation workable at home.
Aside from managing the communications with the family and friends and attending to their own self-care, the caregiver needs to keep on top of the needs of the ill person – from booking and attending appointments, the medications inventory, ordering and setting up the equipment needed in the home to facilitate the sick individual’s mobility for as long as possible, these are among many other details to keep track of. Then, once the illness becomes more resource intensive, there are several care providers that may come into the home environment to attend to the medical and other needs. What services and type of health care professionals come to your home depends on the services available in the area you reside. Inquire with the physician and/or the homecare team caring for your loved one.
It is helpful to organize your communications in such a way to create quick and succinct summaries that are easily accessible to all the care providers who visit the home prior to going in to see their client.
How to keep track of the many and varied details with the assortment of people involved in the process whilst things are changing so frequently.
In this article, I offer some tips on setting up message boards in the home as well as who to give what information to make the best use of the medium and decrease repetition.
Depending on the circumstances, it may be helpful to have different boards for the different care providers or, alternatively, separate sections on one board for health care providers, for volunteers, and for visitors.
Types of Message Boards
There are different types of “boards” you can use to share updates with the care providers who come visit in the home. If you don’t already have something at home that fits the bill for your purposes, below are reasonably priced options to consider.
Cling-on static sheets or static dry erase sheets with dry erase markers are wondrously handy. These sheets stick to the wall or a window and because it is attached with static there is no damage to the surface it is pasted on. You don’t need tape or glue or nails/screws. Cleaning the sheet can be done with a dry cloth but no liquids as they cancel the static.
Large white paper sheets and markers. Sheets of paper could be taped on the wall or window. A caution, depending on the type of markers used they may bleed through on the surface underneath.
Self-stick wall pads with markers. These are generally set up on an easel or something similar, so it is at eye level.
Large wall calendar with markers. Different options are available depending on your preference: paper, dry eraser board, peel and stick, magnetic board. This option may be very useful to keep track of appointments and visits. Providers can quickly see what is scheduled in the coming days.
Messages for Health Care Practitioners
Below are examples of messages that could be written on the board which helps the health care professionals visiting the home to know, at a glance, the latest information about their client’s condition.
List of current medications and dosages
Prescriptions renewal needed
Appointments / Services scheduled – who is coming when and what is their specialty e.g. nurse, personal support worker (PSW), physiotherapist (PT), physician (MD), social worker (SW), foot care nurse, etc.
Questions to ask the physician / nurse
New symptoms and since when
Equipment required or to order
List of visitors for the day – friends and family
To do list e.g. book clinic appointment, ask about equipment for bathroom
Messages for Volunteers
Depending on where you reside, there may be hospice organizations established in your area with whom you could request a volunteer to visit your home to offer aid. Inquire about this possibility through your physician, homecare nurse or through your local community deathcare groups about trained volunteers for home support.
Below are possible tasks for volunteers that could be attended to while they are visiting, although note that any volunteer assistance must be congruent with the agreement made with the hospice management team.
Walking the dog
Sit at the bedside while caregiver does groceries/laundry
Warm up a meal
Help with household chores
Location of …. keys, leash, book, etc.
Special notes, e.g. “Please sit in living room, I’ll come get you when I need you.”
General Messages for Visitors
Below are a few examples you could relay to all visitors to assist them in knowing how to be around the individual that is ill. You may choose to send this information by email to the family members and friends as well as have a board at home for the care providers.
Inquire with your loved one, the sick individual, about what brings them comfort and feelings of safety. Think about what could be lovingly and compassionately offered by the visitor.
Knowing what not to do is as important as knowing what to do and can be very helpful for the visitor so as not to create distress or more suffering.
Please limit your visit to …. minutes
S/H/They are happy to ….
Receive flowers, hand massages, music, treats, cards, well wishes, etc.
Have their hair brushed
Chat about …. e.g. anything aside from their illness
Loves the sunlight, please leave the curtains open
Enjoys someone reading to them
Loves music, please share a song or sing a song
Pray with you
S/H/They are having some challenges with …
Sitting for longer than 15 mins so they’ll need to lie down after that time
Keeping their eyes open but know that s/h/they is listening while you are talking
Pain levels. Please refrain from hugging them, gently touch their hand instead
If the person falls asleep, just be present and know that your visit is appreciated. Please don’t try to wake them up as s/h/they has difficulty getting good sleep these past few days
Noise level. Please speak softly
Please refrain from talking about ….
Overstimulation – please be calm, speak softly, lower the light
If you need assistance is setting up a communication board or network, I’m happy to assist you to sort out what would work best for your circumstances.