Which led me to ponder:
- How can I advocate for myself, while showing that I am an independent, cognitively functioning and capable person, despite having some wrinkles and gray matter in my hair, but not my brain?
- How can I be assertive, not passive or aggressive, and say no to demands upon my time?
- How can I show that need, want and deserve respect for both my time and my boundaries?
- How can I show respect for other's time and boundaries?
Why Communicate Issues to Family Members?
First and foremost, understand that many diseases and disorders are silent, and remain undiagnosed long after one would benefit from medical or pharmaceutical treatment, e.g., dementia symptoms can be reduced and ameliorated. Delirium can be prevented, through the careful monitoring of drugs and the Ontario Medscheck program available through your pharmacist.
That said, when you children show concern it is important to tell them the truth. Symptoms of dementia are easily covered up, well after the time when interventions can assist you. My father, for example, had trouble finding his own street when driving home. I knew nothing of this, and the doctor did not tell anyone. This is a sure sign of concern. If my father had had an accident I would have felt much guilt.
The Purpose of Communication
Communication is a multi-facted process: it is dependent upon effective listening strategies, body language, that lets the other person know you are taking in the information. Adult children are well-meaning. We want to ensure, first and foremost, that you are healthy and safe. As my parents moved from able and independent to frail and fragile, in their fights with cancer they took risks and depended upon other's for their ADLs and IADLs. They fought to cover up their frailty, devoting limited energy to activities, such as making us meals when we visited, that sapped them for days. That was their choice, and their decision, and I felt obliged to point it out to them. It is difficult giving advice, much harder to receive it. I knew I could have done better, hence this blog post!
Barriers to Communication
If you act like a child, or treat your parent like a child: covering up issues, making unsafe decisions (i.e., climbing on the roof to remove snow!), you might be compounding the issues. My mom acted like a child and I treated her like a child. It was crazy, when I look back! She refused to accept or admit she needed help with groceries, housecleaning, and other Activities of Daily Living (ADL). My mother, in her chemotherapy treatment lost her ability to think and act clearly. My father, after radiation treatment, had an infection and became delirious. We began to fight. I tried to ensure that Mom her needs were being met, but when that mother-daughter relationship changes, it is a new course to navigate. You need to renegotiate your relationship.
Family dynamics, bias, prejudice, ageism, family privacy issues, or physical communication issues (hearing impairment, faulty hearing aids) all provide barriers. Also, incommunicative physicians (lack of concrete test information - "you let me worry about that!") can complicate diagnosis, informed decision-making, and a treatment plan that takes you and your particular situation into consideration.
Passive-aggressive patterns of interaction can complicate issues, as well. If you usually give in, and allow others to control you and monopolize your time, it might be time to step up! By being assertive you show that you respect yourself and love the other person enough to ensure that both your needs are being met.
Ensure that your body language matches your emotions and your message: relaxed arms, facing towards the person, making eye contact.
When you communicate, ensure that you use "I messages". This sets up boundaries: that you remain in control, but that you are listening to their concerns. Such language as:
- "I feel upset when you speak to me as if I were a incompetent."
- “When you [their behavior], I feel [your feelings].”
- i.e., “When you yell, I feel attacked.”
- "I feel like a child when you talk to me that way. Please speak to me like an adult?"
- "I feel you are worried and appreciate your concerns. I will speak to my physician/specialist about them."
- "You seem to know something about [dementia, cancer, heart disease, cholesterol - fill in the blank!] can you bring me some more research-based information?"
- "I disagree with your opinion/idea/suggestion, but I will take it into consideration."
- "I respect your opinion, can you explain it more fully to help me understand it?"
- "I will take your concerns to heart. Will you accompany me to my doctor's appointment?"
- "I don't know the right answers, but I will make the best decision with the information I have at the time."
- "If I understand you correctly, you are saying..."
- "I understand that you are concerned, I will not do anything dangerous."
- "I know you love me, I promise not to do anything drastic without talking to you first."
This works, as well, for those who make demands upon your time and energy. Many caregivers care for community members. Sometimes you just have to say "NO" when demands on your time or energy will drain you. Promise you will think about it, do it at another time, or get back to them.
- Make sure your body reflects confidence: stand up straight, look people in the eye, and relax.
- Use a positive, but pleasant and firm tone.
- Try to understand the other person’s motives, love, concern for your safety or others.
- When in a discussion, don’t forget to listen and ask questions!
- It’s important to understand family member's point of view - and let them know that you do.
- Work on a win-win solution: find a compromise or a way for you both resolve your concerns for health and safety.
These types of therapeutic conversations help the carer and the caregiver, as well as the care recipient. It shows that you take their concerns seriously. It open up the paths of communication, ensures that you can establish golas, expectations, values and beliefs that fit in with your family values. Effective conversations can prevent misunderstandings, and reduces anxiety, isolation, clarifies understanding, maintains a relationship of trust, improves pain and symptom management, and prevents conflict.
As a family member tries to advocate for you, and many of us must do so, it is important to show that you are listening to them. Many dysfunctional families do not function well during a medical crisis. Sometimes, anger towards a disease or disorder becomes displaced as you take out frustrations with the system or health care professionals, on family members. How many times have we come home stressed from work, only to take it out on our kids? It is modelled behaviour!
Pasacreta et al, (2001) in Textbook of Palliative Care, suggests that you self-advocate by
- provide concrete, neutral information
- prepare yourself before a stressful event
- increase opportunities to maintain control
- encourage participation in health care
- use a medical diary to record information
- acknowledge your fears
- explore near-miss events
- manage your physical symptoms (prevent pain, keep on top of it)
- structure uncertainty
- encourage hope
Pasacreta, J. Minarik, P., & Nield-Anderson, L. (2001). Anxiety and depression. In B. R. Ferrell & N. Coyle (Eds), Textbook of palliative nursing. (pp. 269-288). New York: Oxord University Press.
SHAQ Internet Assessment. To get an overall assessment of factors that can cause you to be too nonassertive or aggressive, take the Success and Happiness Attributes Questionnaire (SHAQ), which contains several scales related to relationships and assertiveness. This is the best place to start your program. You will get a chance to look at yourself in detail to see what self-esteem, internal control, nonassertive or aggressive beliefs, lack of assertive interpersonal skills, or other factors may be causing your nonassertiveness or aggressiveness. Go to http://www.csulb.edu/~tstevens/success.