In 2018, Barron’s had a cover article on the costs of caregiving. What was interesting to me was that it wasn’t primarily covering the costs for the person needing care, but the financial and emotional costs associated with the caregiver.
The Gentle Slope
Giving care for someone who is older or has a degenerative condition starts out quite simply. In fact, you might not even call it care-giving. It can be as simple as lending a hand to get to an appointment now and then, or an extra trip or two to visit and help with moving into a new place. At this phase, it can easily seem manageable and not take much time. The time cost is very low, and the financial cost may be just to have someone check in on them regularly.
This is often a denial phase, since the caregiver recognizes that some help is needed, but denies that it might get worse. In addition, the caregiver may think this will just be once-in-a-while and not be prepared to do this for years. However, this is the best time to rally the family together and have frank discussions about what your family will do if aunt, uncle or parent needs something more. This is the time to figure out facilities, types of care, and financial implications because this phase won’t last. Plus, if there is a need to move into an assisted living or other facility, they often have long wait lists. Now is the time to visit them and determine where the loved one will need to go when it is time to do that.
The Health Crisis Sharper Slope of Caregiving
The next phase of caregiving may come suddenly with an injury or illness from which the individual doesn’t ever make it back to the previous baseline of quality of health. This can also appear to be temporary as they bounce back from the injury or illness and the caregiver is willing to put in a lot of time to assist but for short duration.
Often the individuals don’t bounce back and the caregiver quickly realizes that 1) they are going to need this level of support for quite a while and 2) the caregiver isn’t prepared or able to keep up the pace needed over longer than a few days or weeks. Many caregivers have discovered that something they think will be only a few months or a year or two are dismayed to discover that they are still doing this a decade later. That takes a real toll on the caregiver’s life – financially, socially, career and family-wise.
Over the Precipice: The Steep Slope
The last phase is the intense caregiving phase. This is when the caregiver is providing around-the-clock care or nursing care (not for the squeamish). The result at this level quickly results in burn-out and depression. Even before reaching this point, caregivers should consider respite services to allow them to take a breather from caring for a loved one. People caring for Veterans can often make use of VA resources to provide care for short periods of time. Other facilities such as assisted living and nursing facilities can also sometimes provide short-term care for individuals. Finally, home healthcare agencies can also be hired to provide additional assistance or time off for a primary family member caregiver.
Sometimes this is the point where it becomes too much for a caregiver to do and a facility with around-the-clock care professionals can help. Moving the loved one into an assisted living or a nursing facility may be the next step that provides for care, but doesn’t require a full-time caregiver to support them.
A Personal Experience With This Slope
As my parents aged, I watched my father go through these phases as caregiver to my mom. As she declined over time, my father took over more and more of the roles and activities. At first, she stopped driving, so he took over being her driver to take her shopping and to doctor appointments. But each time mom got sick or had an injury, she wouldn’t return to the same level of health, and dad would take on one or two more things each time.
As her world started to shrink in ability to go out and do things, his also shrank as he spent more time at home so that he would be available for her. In that third phase, she had so little energy that he had to help her throughout the day (and often the night). Mom passed away while still living at home, but that next step of moving into assisted living for her would not have been far away – he was at a point where his emotional and physical health were quickly reaching his limit.
The best way to prepare for this in your own family is to have a plan. Decide early who will be the senior care coordinator in the family, who will provide actual care, and look at the financial picture to determine what options are available. As the Baby Boom generation ages, more and more services are being made available. A few options include Geriatric Care Managers, Daily Money Managers like myself, and referral organizations such as the National Association of Area Agencies on Aging.
These can help you “learn to know what you don’t know” and put you in a position of knowledge before it becomes a crisis to deal with. My sister and I thought we had covered many scenarios and knew the names of the care facilities nearby, but it wasn’t until a crisis event occurred that we realized we hadn’t done the actual evaluation. That gave us just days to make decisions rather than weeks or months.
Even though caregiving can be really life-changing as you care for someone, it can also be very fulfilling. Planning ahead – even if it is learning about the stages and options available at each stage – can make that time more meaningful and less stressful when it comes.