The role of caregiver is an extremely important and challenging undertaking—and one that most of us are not fully prepared to undertake. Although having a background in health can help at the margins, it is instructive and sobering to interact with the system in an up close and personal way.
When my husband suffered a stroke 18 months ago, we faced a broad array of challenges in dealing with both the formal health care system and the new roles we were playing as patient and caregiver. But now with a little bit of distance, I hope to share some insights and lessons learned that might help others in similar situations and/or suggest some new directions for policy thinking.
In the summer of 2014, my husband and I were beginning to get things in order to enjoy our retirement; he was no longer employed but still very active as a writer of books, and I had been planning to phase into retirement. But in September, everything was suddenly put on hold.
A stroke to the left occipital lobe left my husband with vision loss, memory problems, and an inability to read. As his sole caregiver, I found myself plunged into a confusing world of poorly co-ordinated care, confusing systems, and an expectation that the caregiver could take on full-time responsibilities. As an aging researcher of more than 30 years, I have focused extensively on Medicare and long-term care issues, so I should have been prepared. But studying issues from the perspective of how to improve overall policy is very different than trying to do the applications required. I probably was more prepared than most but still found many confusing and frustrating challenges along the way.
The U.S. health care system essentially assumes that unless a person is fully unable to function, someone else—usually a spouse or close relative—will be available to perform innumerable activities: co-ordination of care, making decisions about appropriateness of providers, performing
skilled therapy and related tasks, dealing with payments, and keeping the rest of life at bay. Most of these activities are outside the purview of any insurance protection, and without these informal supports, the costs of health care would be much greater (Chari, Engberg, Ray, and Mehrotra, 2015; Donelan et al., 2002; Levine, Halper, Peist, & Gould, 2010). And the demographic changes ahead suggest that this issue will only rise in importance (Congressional Budget Office, 2013).
Caregiving is a supremely lonely experience and one
which is taxing on even the most able and energetic person.
I also became aware of how lucky we were to have resources and my time to fill in the many gaps in care—but
even that has its limitations. One can find a lot of advice
about short-term illnesses or end of life care, but much less is written about the serious health condition that takes
a year or more of your life but for which the outcome is
potentially positive. The challenges are many and often surprising. How do you keep pushing for positive results and
improvements over an extended period of time?
The Nature of the Challenge
Many complicated long-term illnesses have their own specific issues and likely similarities with our experience, but I am speaking in the context of dealing with stroke. It is a particularly nasty problem because it seems to be unique
to each individual, and many of the general treatments and
recommendations just don’t always apply. At no stage in
the process, did we ever have anyone really provide a useful, realistic picture of the things to look out for, the likely areas of setbacks, or even the most productive treatments.
The closest explanation that made sense to me came just
several months ago from Douglas’ optometrist who indicated that although scientists understand what parts of the brain do what types of things, no two patients have the
same symptoms even if the damage is in exactly the same
area of the brain. She explained that everyone learns differently all their lives, so the pathways and specifics are
naturally going to vary. That was about the most coherent explanation I have heard despite talking to numerous
One particularly vexing problem has been my
husband’s inability to read. He can write, spell, carry on a
sophisticated conversation, but initially he was unable to
make sense of any letters or numbers. He is getting better—
but it is slow going because the first letter of each word
remains a mystery to him. No one, it seems, has ever heard
of this specific issue, so no one has any concept of how to
address it. Much of the literature on stroke is pretty general
when in reality each patient faces very different challenges.
In addition to the inability to read, Douglas’ short-term
memory was severely compromised and for months he
was not able to keep instructions with multiple steps or
the details of his daily schedule straight (and because of
his inability to read, writing down the instructions is not
an option). Being a diabetic who needs to test his blood
and then do multiple daily injections, it has been difficult
for him to achieve any semblance of independence. That is
extremely frustrating for him and makes caregiving very
time consuming. But his challenges are not of physical functioning or ability to understand issues, so the typical paid companion is not a good fit. Such folks are trained to help with basic functioning and not with figuring out how to
provide a rich environment for re-learning and developing
a (new) normal existence.
How do you go from a life built around reading and writing to being challenged to read a
simple paragraph or set up the DVD to run a movie? It is extremely difficult to maintain optimism about the future
when your whole world is turned upside down.
Finally, vision problems have been an important impediment to recovery. In addition to a loss of peripheral vision, Douglas’ eyes don’t always function well together, making it difficult to have good depth perception and fine motor skills that depend on sight. This means not only no driving, but walking through a crowd or a dimly lit restaurant is also extremely challenging.
The very good news is that except for the peripheral
vision, most of these challenges have lessened and will continue to improve over time. But it means developing a
whole new sense of what one gets pleasure from and how
to interact with others. It means striking out on our own because much of the literature focuses on early recovery
(Rao, Conroy, & Baron, 2009). Many of these challenges
are beyond the capabilities of the health care system,
although there are still important lessons we have learned
the hard way. It is my hope that sharing some of these lessons may help others and will certainly affect my approach to policy analysis and advocacy in the future
The Good, the Bad, and the Ugly of the Health Care System
Even though I have studied the Medicare program for many years, this was an enormous undertaking. When the practical meets the theoretical, look out.
Co-ordination of Care
One of the basic tenets of improving the health care system is to co-ordinate the care that is received in different settings and by different providers (Anderson & Knickman, 2001; Komisar & Feder, 2011). The fragmentation of the health care system should never be underestimated, and consequently, it is difficult to navigate successfully.
In the fee-for-service world, each patient or caregiver is their own general contractor: making appointments, cajoling providers at different levels to communicate, and even deciding what the next steps will be. Many of the specialists are skeptical of each other’s skills and seem to be in competition. Each different setting has a different set of rules and requirements. And particularly toward the end of acute care treatment, it becomes less and less clear what is next and what further progress should be expected.
Do you want to read it complete? Here
Fuente: Marilyn Moon, The Unprepared Caregiver, The Gerontologist, Volume 57, Issue 1, 1 February 2017, Pages 26–31, https://doi.org/10.1093/geront/gnw080