I don’t know what to say

difficult conversationsYour husband “performs” well when his adult children visit and at testing appointments with his doctor, but you know it’s a different story when it’s just the two of you at home. What can you do to get the help you and he both truly need?

What should you do when your parent with dementia doesn’t remember previous discussions about decisions about their care? And how do you even have difficult conversations with a parent when you live on the other side of the country?

These are just some of the complicated issues that were addressed during the question and answer portion of the caregiver webinar entitled: “I don’t know what to say”… Beginning difficult conversations. The webinar was presented last month in collaboration by Alzheimer Society Canada, Parkinson Canada and Multiple Sclerosis Society of Canada. Social workers Elaine Book and Amy Freeman made the presentation, with social worker Theresa Jiwa joining the panel for discussion afterwards. This is the third in a series of webinars especially for caregivers. You can access other webinars and podcasts here.

We all want to develop deeper connections with the people who are important to us. The webinar begins with this statement and explains the attitudes, processes and strategies that can help you achieve a meaningful connection, especially when relating to loved ones with neurological conditions.

A difficult conversation usually means the issue is emotionally charged and we are reluctant to talk about it. We may not want to talk about it, but we must. Feelings of dread and fear can cause anxiety and sleeplessness. And, anticipation of the conversation is often worse than the reality.

Shift your attitude about the conversation. Having the discussion shows you care. Approach your loved one to discover what matters to them, rather than what is the matter with them. Consider how you would like to be approached about the same topic. And do a little homework. Ask others how they have conducted similar conversations and what worked for them. In addition, have the facts available to present options, not decisions, to them. You can even bring notes to the discussion.

The presenters suggest “setting the stage” for the conversation. Set up an appointment, with a date, time and time limit, in advance, and tell them what you’d like to discuss. Only address one issue at a time.  Set up an enjoyable activity, like an outing to a coffee shop, for after the conversation.

Pay attention to your tone. Speak calmly and avoid judgements. For instance, if you are concerned about a parent’s nutrition, instead of saying “Dad, there’s nothing in your fridge!” Try, “I notice there’s not much in your fridge. How are you getting your groceries and preparing meals?” This may be a better way to then explore solutions to the situation – together.

The webinar addresses six challenging topics that caregivers frequently need to address, including:

  • Sharing the diagnosis
  • Recognizing and sharing changes with health care professionals
  • Accepting help
  • Concerns about driving
  • Intimacy
  • Advance care planning.

Elaine Book and Amy Freeman offer strategies and advice for talking about each of these challenging topics. For instance, accepting help is not a sign of weakness; it takes strength. You cannot go it alone, you need help to manage. Try to focus on positives, what is gained, not lost. Reframe accepting help as a way to maintain independence, not take it away.

When someone is reluctant to accept help, listen to their concerns and don’t try to change their mind. Instead, plant seeds with possible solutions and go slowly, taking small steps, one at a time. It does require patience. Another option is to have your family member’s doctor suggest assistance as part of the person’s health care plan, and even write a prescription for specific assistance.

And if you are the person able to help, make the offer, and be specific. For instance, an adult child may offer to spend time with their mother or father, who has a neurological condition, because of concern about the caregiving parent. Make the offer, for example, by saying you want to spend time with that parent, for two or three hours each Sunday afternoon, not because the primary caregiver needs a break.

Underlying all of these difficult conversations are the emotions of loss and grief, for the loss or changing of the relationship and the feelings of sadness, anger, fear and guilt that accompany a loss. The webinar offers advice on how caregivers can deal with these emotions. A quote from caregiver guru Rosemary Parse, provides a guiding light: “Quality of life is not what those outside the life looking in think it is, but rather it is what the person living the life says it is.”

Each person’s journey with a neurological condition is as distinct as they are; so is your journey as a caregiver. Above all, the webinar presenters urge caregivers to be kind to themselves.

So, what about the husband who performs well on tests that we mentioned at the beginning of this article. Know that most physicians consider facts beyond the test results and will usually ask for family input too. And, you are certainly within your rights to ask for your own appointment with the doctor to share your concerns and observations. Social workers can also meet with caregivers and adult children to discuss concerns, strategies and solutions.

If you are connecting from a distance, technology can help. Try Skype or other video/phone options. It’s not quite like being there, but at least you can respond to visual cues. You can also consult by phone with your loved one’s health care professionals, including social workers.

At the close of the webinar, you’ll find a number of other resources to help you begin difficult discussions. Know that you are not alone. Parkinson Canada staff are ready to help you. Call our Information and Referral Helpline at 1-800-565-300 or email your questions to info@parkinson.ca.

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