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.

Repairing the transportation system within our brain cells

Stefano Cataldi

Within every brain cell, proteins are constantly moving from one compartment to another. As new proteins are produced, others are degraded or recycled – an internal traffic system designed to keep the neurons healthy and ensure the body functions properly.

If one or more proteins within those cells malfunction, however, the whole system can break down. Researchers theorize that in Parkinson’s disease, an accumulation of proteins that don’t get cleared away, such as clumps of alpha-synuclein, can cause dopamine-producing brain cells to die and lead to the movement disorder.

At the University of British Columbia, graduate student Stefano Cataldi is studying a particular protein, called VPS35. He believes VPS35 is involved in regulating this cellular traffic flow. He’s trying to identify the specific role that the protein plays in the process. Cataldi received a Quebec Research Fund on Parkinson and Parkinson Society British Columbia, two-year, $30,000 graduate student award from the Parkinson Canada Research Program to pursue this research.

Cataldi, a neuroscientist, is using mouse models of Parkinson’s disease to observe the way that mutated forms of VPS35, or mouse models where the gene is absent, affect movement and the symptoms of the neurodegenerative disease.

“We want to know why, when this protein is altered, you have these malfunctions, and what that means in the mouse behavior,” Cataldi says.

If he can determine whether VPS35 is working more or less than it should be during the protein transportation process, Cataldi believes the protein might become a drug target that could either slow down or speed up the traffic jam taking place within affected brain cells.

Unclogging that traffic jam early in the process of neurodegeneration, before the symptoms of Parkinson’s are advanced, could preserve neurons and prevent the progression of the disease, Cataldi says.

“The neuron is still alive, so we could still fix the problem before it dies,” he says.

Cataldi, whose background is as a pharmacologist, began studying Parkinson’s disease at the University of Ferrara in his native Italy. When he moved to Vancouver to complete his PhD at UBC, Cataldi also began volunteering in the Parkinson community. That fueled his passion to continue his research into the causes of this disease.

“Parkinson’s patients don’t give up. They are singing and exercising and dancing and doing whatever they can to beat this disease,” Cataldi says. “When they come to you as a scientist, they actually thank you for what you’re doing. I think they are amazing people.”

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

Your Will, your wishes: November is Make A Will Month

Have you ever dropped a pebble into a pond? When the stone hits the surface of the water, you see ripple after ripple spreading out from the point of impact. Did you know that your legacy could be like that? Properly prepared, your Will can create a ripple effect of goodness and generosity to the people and charitable organizations you care about. A carefully written Will ensures that your assets can be distributed according to your wishes, after your death. You can ensure family members can afford the costs of higher education. You can also leave something to the charities you have respected and supported financially — a charity like Parkinson Canada.

The possibilities are endless, and to make these good things happen, you must complete your Will, sign it and have it witnessed. By taking the time now to consider your wishes and write them down, you provide such an important planning tool for the financial security of those you care about. Financial advisors and estate lawyers recommend that everyone should have a Will. Age is not a factor in determining when is the best time to prepare your Will, or update the one you already have. If you have assets, a Will is essential.

When you don’t have an up-to-date Will, you lose control of what happens to your assets. Gifts to specific individuals or to charitable organizations will not occur. Your estate will be divided according to a rigid provincial formula and may go to close relatives who may not need the money or, worse, for whom you have little connection or bond.

Your Will is a vital document to have for the above reasons and more.

Making a gift to charity in your Will, is:

  • Convenient. It can be made regardless of your age and for any amount.
  • Cost effective. Your present income will not decrease.
  • Simple. It is easy to arrange. Simply instruct your lawyer to include a gift to Parkinson Canada in your Will. It can be a specific amount, a percentage of your estate, or the remainder of your estate (a gift after debts have been paid and other gifts have been distributed.)
  • And, provides tax relief. Your estate will receive a charitable tax receipt, which can be used to reduce taxes on your final tax return and, in some cases, the previous year’s tax return.

A gift to Parkinson Canada in your Will:

  • Helps people with Parkinson’s. Your gift becomes the gift of education and support services, and enables Parkinson Canada to advocate on behalf of Canadians living with Parkinson’s.
  • Is an investment in a cure: Your gift provides funding for innovative research, expanding our knowledge about symptoms, diagnosis and treatments for Parkinson’s disease, and ultimately brings us closer to a cure.

If leaving a gift in your Will to Parkinson Canada is something you would like to consider, please contact Sue Rosenblat at 1-800-565-3000 ext. 3386, or PlannedGiving@parkinson.ca to explore your options in confidence.