Wednesday, 17 December 2014

Carepartner Wednesday--The Carepartner's Alphabet--B

B is for Boundaries and boundaries are hard.

Jody receives multiple phone calls in the night from her mother, who is living in a retirement home. Mom has an anxiety disorder and although Jody knows she is getting excellent care that extends to her emotional needs as well as the physical, the calls continue. Mom is worried about various aspects of her care, even though the staff looks after all that. She calls again and again, sometimes sounding strained, sometimes crying. Guilt is Jody's constant companion, but so is exhaustion. What should she do?

Dolores was leaving the husband for whom she cared for years, in the hands of others for the first time. He moved into a care home because of his worsening condition, but Dolores was having trouble letting go. She put the move off for months, and then kept moving back the day they would arrive. Finally, he was having lunch with the other residents (and without her) and she asked, "Can I peek in on him?"

Boundaries are difficult because they involve love and guilt and uncomfortable decisions. The carepartner is seldom sure if the decision they are making is the right one, and sometimes the person they care for assures them it is not. Even people with dementia (sometimes especially people with dementia) are adept at manipulation.

So how do you set boundaries?

Here are a few suggestions. This is by no means an exhaustive list.

1) Evaluate. What is being asked? Why is it being asked? Is there a reason behind the request that has nothing to do with the actual request? It's helpful to look at what is really going on. An example is someone who is asking for your time, when what they are really wanting to know is their purpose and value. Sometimes, when assured that they are loved and important in your life, the demands are less. Sometimes.

2) Beware of button pushing. In our family of two girls and one boy, my son could almost effortlessly push his sister's buttons. He was the youngest, but he knew the exact words and actions to drive them nuts. (What makes me chuckles is that it still works!) Just as siblings or our children can find our soft spots, so can those we care for. When Jody was away for two weeks (and couldn't be phoned) her mom was content and seldom anxious.

3) You aren't the only solution. Even though you may be convinced that nothing will be done correctly unless you do it, that is seldom the case. "As caregivers, it's often hard to shake the idea that we're responsible for every aspect of our loved one's care," says Pat Samples, of Brooklyn, Minnesota, author of Daily Comforts for Caregivers. "It's easy to take on more and more responsibilities and believe that you're the only one who can properly care for your loved one and that no one else can do it as well as you do."1 Find people you can trust to share the load--then share it!

4) Get support. It might be helpful to talk to a professional about your feelings and the struggles with boundaries. But often what you need is a good friend who can listen and give you permission to do what you know you should. I have been the "permission person" for many family members. I love to see the freedom and de-stressing which comes when carepartners let go. Often it takes the relationship to a healthier level.

Jody learned to trust the excellent nurse who made her mother Ovaltine and sat and chatted with her to reduce her anxiety. After a special signal was developed for emergencies, she turned off her phone and got a good night's sleep. So did her mom. Dolores went to lunch with her friend, and her husband chatted with the man beside him. Boundaries make it possible for both members of the caregiving relationship to grow.

Now, go build that fence. Start small, but start.


  1. This is a wonderful article, Ann! It can help so many people dealing with a close-to-impossible situation! Not only have I cared for the elderly with dementia as a Psychiatric R.N., Clinician-Coordinator, but my mom had dementia. My life experience helped me in many ways regarding my mom -but not as far as boundaries go. I struggled along with every caregiver. It took me a long time before I began to care for myself while caring for my mom. Thank you your insights.

  2. Thank you, Carol. I hope you keep reading. My mom had Alzheimer's, but it was long before I knew much about the disease and my dad and my sister were primary caregivers. I was also caregiver for my first husband, who died of heart disease. There are no rules about boundaries, only suggestions, as every case and every person is different. Thank you for commenting!