In my role as a hospice social worker, I have encountered patients who have an able and involved network of family and friends in caregiving roles.  They are the fortunate few.  More often than not, the situation is an elderly married couple whose children live in other states and who have a dwindling network of friends who are able to assist.  Or, the patient is a middle-aged person who is riddled with cancer or an advanced illness needing 24/7 care and the only person available is their 20-something child or their spouse.  No one person can provide 24/7 caregiving for very long.  There’s no shame in admitting that help is needed; there’s no shame in accepting when help is offered.

Much of the focus on end-of-life healthcare planning is centered on the patient’s choices.  Caring Choices advocates strongly for patients to consider their options and discuss healthcare choices with their healthcare team and people they love.  We also, however, advocate for meaningful conversations that encompass not only the healthcare choices but also the caregiving needs, the availability of options, and how those options will be financed.

Depending on which article you ready, 75-90% of Americans wish to die in their own home.  Dying in your home, for those who want that, can be a peaceful, comfortable end if there are adequate planning conversations long before the chronic illness progresses or the terminal diagnosis is pronounced.

In order to remain at home through the end of life, you will need help.  This is a fact that you need to wrap your brain around before you read further.  YOU WILL NEED HELP whether you are the patient or the caregiver.

My first recommendation is to look within your family/friend circles to find private duty caregivers.  Typically, these are people you already know and trust.  Some will supplement caregiving out of the goodness of their own heart; others may ask for (or you may offer) minimal remuneration ($10-18/hour).  This is also the network who will most often provide meals, run errands, visit and provide some relief of the caregiving role.  They key is to ASK them for the help you need; people don’t know until they’re asked.

A second option is hiring caregivers privately through homecare agencies. These caregivers help provide care for yourself or your loved one at home in addition to enlisting hospice services.  Many agencies provide in depth training on how to provide care from bathing/dressing to bedsore prevention and caring for people with dementia.  Some agencies, however, do not provide much training.  You want to be certain you are asking agencies about the training they give their staff.  In our local area, these agencies typically charge between $22-25/hour depending on the level of care needed.  That adds up to a lot of money pretty quickly.

A third option is to qualify for Medicaid (Medical Assistance, MA) Waiver services but be prepared for this process [from application to approval] to take about 90 days.  Unfortunately, many people who elect hospice do not have 90 days to wait for caregiving help (but that’s for another blog).  In order to qualify for MA, you (the patient) must: (1) meet income and asset guidelines; (2) submit an application which can often include a myriad of paperwork including 6 months of bank statements, life insurance and investment valuations, and proof of income to mention a few of the requirements; and (3) have time to await the approval process.   Once qualified for MA Waiver, your options for caregivers expands to usually cover whatever hours you need (up to and including 24/7) and whatever services you need (personal care, light housekeeping, errands, companionship, etc.)

So, those last three paragraphs talk about the “who.”  Your next consideration is “who will do what.”  The language you use in these discussions needs to be very clear and not open to interpretation.  [Remember the Abbott & Costello “Who’s On First” routine.  Language is important.]  As the dying process progresses, patients typically become less able to do things on their own:  walking independently progresses to using a walker/wheelchair to being bedbound or unable to move on their own.  This typical progression often results in needing assistance with other Activities of Daily Living (ADLs) like bathing, dressing, and toileting.  This is where the really important caregiving questions begin.  Who among your family and friends will be able (willing, comfortable) to help you bathe?  Who will be able (willing, comfortable) to wipe and clean you after toileting?  Who will have the physical strength to help you get up out of a recliner and into the bed, or to turn and reposition you in the bed?  Who will be able (willing, comfortable) giving you specifically measured doses of comfort medications as your end draws near?  (There are many other caregiving questions to consider but if you can answer these four most challenging queries, the other caregiving roles will likely “fall into place.”)

These are important conversations to have now with your family and friends.   That way, when the time comes that you or a loved one decides to stay at home through end of life, you’ll already have the structure in place.  Everyone always says “I don’t want to burden my family.”  Having these conversations and getting a plan is place is exactly how you alleviate much of that “burden.”

Embrace the elephant in the room.  Start talking about healthcare choices, but also talk about who can provide caregiving assistance and when they are available to provide it.

© 2017 Caring Choices