Caregivers of persons with dementia soon discover that placement does not reduce caregiver burden. Placement rearranges the challenges. Families and friends, however, mistakenly assume that once placement happens, caregiver responsibility magically dissolves away. Their assumptions often magnify the guilt and angst already flowing through the caregiver.
Dealing with Guilt
“Promise me you will never put me in a nursing home.”
“OK, after you promise me that you will never get dementia.”
Both of these “promises” are equally silly and unrealistic. Nobody knows how they will age or what ticking time bombs will go off…in our heads…in our hearts…in our lungs…or in any of our vital organs. I have seen too many people nearly kill themselves caring for someone who truly needed another level of care. I hear the guilt constantly, especially during this time of year. I overhear snippets of conversation while at the gym or the store, as naïve people pass judgment on a situation that they know nothing about.
Until you are the one providing care to a person with dementia, you will NEVER know or understand the unrelenting responsibility. And if you have taken care of someone with dementia, you may not understand the unique challenges faced by a spouse dealing with behavioral-variant FTD or an adult child overwhelmed with his parent’s Lewy Body dementia. Just because YOU cared for someone at home does not make you better or worse than a caregiver who decided on an assisted living or nursing home. (Click here to read about the difference between assisted living facilities and nursing homes).
Changes in Caregiving Responsibilities
There is a myth that placement equals the end of caregiving responsibilities. Placement does not reduce caregiver burden. Placement simply changes the caregiving responsibilities. First, the decision to move a family member with dementia itself is an extremely difficult one. Caregivers usually reach a heartbreaking place where they know that they can no longer handle the physical aspect. The needs of the person with dementia exceeds their abilities. That realization is followed by the draining task of finding the “right” facility: someplace nearby, affordable (or as affordable as possible), and appealing. Then, there is the roller-coaster ride of finding out that the number 1 choice has a 2-year waiting list but the facility with an open bed is an hour away. Finally, a decision is reached and a plan is put in place to relocate the individual.
Yes, there are some positive aspects to placement. The caregiver who never got more than 2 hours of sleep at a time because the person with dementia rose out of bed 8 times a night may finally get some nocturnal rest. Another caregiver’s daily schedule may be more manageable because he or she does not have to make sitter arrangements just to go food shopping.
But, there are new challenges. Caregivers worry that their loved one is receiving care and being treated respectfully. The assisted living or nursing home staff never seems sufficient for the amount of care everyone needs. Caregivers spend all Sunday afternoon visiting and then receive a call as they enter their own home because their family member has just used his last incontinence product. Which the family is responsible for supplying.
Families are also fearful of involuntary discharges, much more common on the assisted living side. Staff do not always know how to handle common dementia behaviors and may trigger behaviors that escalate into physical contact. The person with dementia is then labelled as problematic or as a legal liability, and the expulsion begins. Or, the family member is sent to an inpatient psychiatric unit and somebody discovers a raging urinary tract infection–which the family member suspected but could not convince the assisted living staff to look into.
Lessening the Burden
I want family caregivers to know that placement does not mean you failed. It does not mean you are a rotten son, daughter, partner, spouse, sibling or friend. It means that you are continuing to care for the person with dementia. You are looking for the best option for ALL concerned. Let’s face it: if you drop dead because you literally killed yourself trying to care for your loved one, he or she is going to be placed somewhere…and you will not be there to speak up for your loved one.
I have also seen MANY situations where the person with dementia DOES BETTER after placement. There is more interaction with others. There is more food variety. There is a definite structure and routine. You may not know this because the person with dementia constantly asks you to go home when you visit. But, they also asked to go home when they were living with you! Read here for information about visiting people in memory care.
And if well-meaning family members or friends comment about how easier things should be know that your loved one is living in a memory care unit or nursing facility, share this post.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.