“Do you have any advice for those of us who have surrendered our family members to care?”
I saw this comment on one of my FB posts. This question broke my heart. It was the word, “surrendered,” that hit me emotionally. The word, “surrender,” carries a lot of feeling and imagery. A family who is homeless, surrendering (giving up) a beloved pet to the animal shelter. Weary, beaten soldiers laying down their weapons and hoping for mercy. Ukrainian townspeople unable to hold back opposing Russian forces anymore and waving a white flag—knowing everything they have will soon be taken away.
I don’t have to tell anyone reading this blog or listening to my podcast that dementia caregiving is challenging. Especially if you are flying solo. Placement is likely going to be a necessity—not an option—at some point.
First, please stop comparing your situation to others and feeling like a failure. Other caregivers can be super f*cking judgy, and this sucks. Support groups can be helpful, but they can also be a source of problems. This is because some groups are well moderated by facilitators who are knowledgeable about dementia and who have some type of formal training (social worker, nurse, gerontologist), while others may be run by a well-meaning individual who cared for 1 family person and now believes themselves to be an expert. If you have cared for 1 person living with dementia…you have cared for 1 person living with dementia.
Placement may be the kindest decision you ever make…and here are some reasons why.
Your Health is Taking a Hit
Dementia caregiving involves physical and mental effort.
Dementia does not get better or improve. Some challenges go away, but they are immediately replaced by new ones. For example, imagine that you are currently struggling with your loved one wandering off. You are finding different and creative solutions to prevent what is called “elopement,” that is, your loved one leaving your home and getting lost somewhere. You are losing sleep because you are worried that they may exit in the middle of the night. You are mentally exhausted, trying to come up with solutions to the wandering problem.
Over time, your loved one with dementia starts to have problems walking. Wandering is replaced by falling. Sometimes, you can get them up, but when you cannot, you must call the local paramedics or fire department. The wandering concern is slowly disappearing but you now you are dealing with falls—and injuries and trips to the urgent care center or emergency department—regularly. This new problem is taking a toll on both your physical and mental health.
Then one day, your loved one living with dementia can no longer walk. The wandering problem is “solved,” but the new problem is a lot more physical effort on your part. You must help them stand, pivot onto the wheelchair, and move them to the bathroom to get cleaned up. Then, you help them stand, pivot onto the wheelchair, and wheel them to another room in the house. The physical strain on you is enormous.
Too many caregivers push themselves well past their physical and mental capacities. Researchers have reported that caring for a family member with dementia can shorten one’s life by 4-8 years. Around 20% of spousal caregivers die before their loved one living with dementia. Dementia caregivers have higher rates of depression and anxiety than non-caregivers. Only you can make the decision about when placement is necessary to preserve your own mental and physical health.
Dementia Behaviors Can Make the Home Environment Unsafe
The needs of the person living with dementia may outstrip what you can competently and safely provide at home. Some people are able to obtain in-home caregiving assistance, depending on the resources available. Others have more limited resources, and they cannot keep up with the care needs of the person living with dementia—especially incontinence. If you cannot safely and competently provide the level of care your loved one needs, keeping them at home may result in inadequate care. This is another situation where placement may be the kindest thing to do.
Constant wandering away from the home, threats of violence, bouts of rage—these are but a few of the behaviors that create a need for placement. These same behaviors can also make placement difficult as well…but that is a topic for another blog or podcast.
Some Aren’t Dementia Caregivers
There are people who are just not made to be dementia caregivers. I have a friend who is fond of saying, “everyone one can sing, but not everyone is a singer.” I’m going to steal her comment and say, “everyone can care, but not everyone is a carer.” Some people are natural carers—like my mom. Others learned to be dementia caregivers—like me. Dementia caregiving can be taught—I teach it all day long. But just as there are people who will never be singers no matter how many years of singing lessons they receive, there are people who are just not cut out to be dementia caregivers. Period. And if they try to meet societal expectations and take on a job for which they are unprepared, the person living with dementia will be the one to suffer.
Another interesting societal behavior, at least in the US, is that a man who places a family member living with dementia into some type of facility will not receive the same level of condemnation and reproachment as a woman who makes the same decision. If you are a woman and a wife or daughter or daughter-in-law, note how you become the default caregiver. No one assesses you for aptitude, and it does not matter what else you have going on in your life. And heaven help you if you have some type of healthcare background. This gender expectation drives me crazy. Maybe someday these gender roles and expectations will disappear, but for now, the gender-based assumption is alive and well.
Being a woman does not make you any more qualified to be a caregiver than being a woman makes you qualified to start working as a midwife. True, many of us were socialized to accept a caregiving role. But there is no dementia caregiver gene that lives on X chromosomes.
I am not a family therapist–although I feel like one by the end of most of my clinics.
Physical abuse, incest, emotional abuse, neglect, substance abuse, interpersonal violence–these are sad but true realities in many families. These problems tend to be hidden; if these problems are shared, they are shared with a trusted therapist. Then the abuser develops dementia and his or her victim (and survivor of these traumas) is expected to step in as a caregiver.
I get really pissed when I hear, from well-meaning but clueless people, how someone “should just get over it” because the trauma happened decades ago. Or that a son or daughter should “forgive and forget” and step in to take care of the abusive parent.
People living with dementia move backwards in time, and they may return to that abusive behavior and trigger the caregiver. The caregiver, in turn, may lash out. They could not fight back when they were children, but they can fight back now! This is a really bad situation that is going to cause harm for both the caregiver and care-recipient. Placement would definitely be a kindness to all involved.
Placement Does Not Reduce Caregiver Burden
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 investigate further.
Dealing with Placement Guilt
“Promise me that you will never put me in a 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, as comments on FB posts or in the emails I receive. 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.
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!
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! And if well-meaning family members or friends comment about how easier things should be now 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.