High Caregiver Stress Increases the Difficulties of Working with Clients
By Pamela D. Wilson, CSA, MS, BS/BA, CG
Many attorneys become involved with families when health care issues arise, especially memory loss. I see many cases where a caregiving situation running smoothly for years suddenly turns into a nightmare. Perhaps the individual requiring care becomes combative or incontinence becomes an overwhelming task to manage. A previously comfortable situation becomes turbulent and turns into a situation where the caregiver is at a breaking point.
However no thought was previously given to legal needs. Thus there is no vehicle for the family member to make health or financial decisions on the part of the person needing care especially if the consideration is to place the individual in a care community. And, as their attorney, you are brought in to work magic and to provide a solution for an individual who seems to lack the ability to make their own healthcare decisions or to direct care.
Sometimes it is a more basic situation where the person requiring care denies they have any memory loss issues in spite of bills not paid and car accidents. Many times the caregiver just gives up the discussion because they lack the ability to negotiate a conversation that results in change. I have experienced this many times and have a relatively high degree of success in moving the situation to a compromise for help that includes agreeing to legal intervention by a family member.
Imagine how just a change in the caregiver – care recipient situation can have drastic consequences. A study released in the Journal of the American Geriatrics Society1 indicates that caregiver-care recipient interpersonal interactions contribute to the presence of neuro psychiatric disorders in individuals with dementia. The neuro-psychiatric disorders studied included: restlessness, constant talking, hallucinations, paranoia, uncontrolled anger, combativeness, and danger to self, danger to others, destructive behavior, repetitive questions, wandering and waking the caregiver.
Experiencing these disorders may be the difference between a caregiver who helps for short periods being able to calm the individual versus a family member living in the house 24/7 whose presence heightens the activities of the individual. There are times when a person with caregiver stress becomes the wrong person to care for the individual. It’s not easy to tell a spouse they are the cause of behavioral issues in their loved one. Often I am brought into these situations to work through not only the interpersonal issues of caregiving but to educate about the progression of memory loss. Often I’m the bearer of reality, or bad news.
It is well documented that caregivers are depressed. It can be a difficult, time consuming and tedious role especially when care needs are high. This depression has a dual effect on the person receiving care. This means that caregiver depression contributes to challenging behaviors in the care recipient and vice versa, challenging behaviors contribute to increased depression in the caregiver.
How many times have you been involved in an interaction where as the other individual became more animated, you became responded with similar behavior? It is difficult to maintain a calm demeanor when the other person is bouncing off the walls. Not surprising, more depressed caregivers report more behavioral issues in the persons for whom they provide care.
There are times when a family member will tell me that their mother called them a bitch or refuses to bathe. I smile, acknowledge the bumps and bruises and talk about the importance of education or support groups because these interactions are perfectly normal with an individual who has memory loss. I’ve been called worse and have had my hair pulled by clients with memory loss, bringing back memories of interactions on the playgrounds of my childhood. We begin as children and return to children.
Caregivers with lower levels of education generally have a lower level of understanding of dementia and less well developed coping skills than individuals with advanced education who may be caregivers. At the home of some clients there is a revolving door of in home caregivers because many agencies lack the time to arm their employees with the education and skills required to care for a more advanced memory loss client. Believe me – this is a learned skill and many caregivers new to the situation do not survive.
In addition to being the legal expert, some families expect you to have all of the answers. Those of you who deal with memory loss clients certainly become more skilled at helping families navigate, however there are times when the outside perspective of a specialist in care navigation will benefit your family and build on your already positive relationships. And sometimes initiating this relationship will allow the family a resource as their family member progresses through the disease and the last years of their life.
(1) Sink, K.M. and others. Caregiver Characteristics Are Associated with Neuropsychiatric Symptoms of Dementia. JAGS 54:796-803, 2006.
©2012, 2013 Pamela D. Wilson, All Rights Reserved.