Natalie Strouth is a nurse with Saint Elizabeth and the information specialist behind Ask Elizabeth, a free caregiver support service. Saint Elizabeth, a home health care company, has been a trusted name in Canadian health care for more than a century and is a national, not-for-profit, charitable organization.
In her weekly column, Natalie answers your questions about caring for a family member or friend who needs extra support -- and caring for yourself as a caregiver.
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Kerry asks: My sister was recently diagnosed with Multiple Sclerosis and she is refusing to accept any help from her family, friends or health care professionals. When I try to talk to her about it, we always end up in an argument. Do you have any advice?
Being diagnosed with a chronic condition like MS can bring on a tidal wave of emotions, and resisting help is a very common challenge. You sister is grieving the loss of some abilities, independence and freedom. She is probably very used to being in control of her life, and fearing the loss of that sense of control can be an immensely painful and scary experience.
It is important to know that there is no right or wrong way to cope with a diagnosis. Understanding your sister's pain and the grief she is going through to accept her diagnosis may help both of you cope in new and unexpected ways. Even though these emotions are upsetting, grieving allows us to survive change. It can help people to find new and creative ways to deal with their situation. For people with MS, grieving can be an important part of re-evaluating life, and making the right changes. In the longer term, grief can be positive.
The process of grief often involves extreme thoughts and a roller coaster of emotions. It is a process that requires your patience, love and ability to be present and listen. The experience will be different for everyone, but it can generally be broken down into five stages:
- Sadness and depression
Listening is often overlooked for more "fix-it type" approaches to helping the ones we care about. Although your sister's safety and physical needs are important her emotional needs are just as important. Your sister needs to feel that her feeling of loss is acknowledged, that it's not terrible to talk about it, and that who she really is won't be forgotten. Here are some tips to think about:
Understand that you can still have a full life with MS: Despite the complex changes a diagnosis of MS brings, your sister can still have an enjoyable life. While you can't expect her to accept her diagnosis right away, you can support her with adapting to it -- and not giving up on her activities and goals.
Listen without judgement: Create a safe environment for your sister to cry, get angry or to break down. Avoid trying to reason with her or tell her how she should or shouldn't be feeling. You want her to feel free to express herself without fear of judgement, argument or criticism. Silence can be powerful thing. Just making eye contact, squeezing her hand or giving her a hug will be all she needs some days.
Start small with offering help: It is very hard for those grieving the loss of independence and abilities to ask for help. Offer very specific suggestions, like "I'm going to the grocery store. I noticed you are out of the bananas, can I pick up some for you?" Consistency is good. You may have to suggest ways that you can help on a regular basis before your sister takes you up on the offer. Less can definitely be more, and offering small bits of help will get you further and be more supportive than trying to make huge gestures or changes to her life.
Plan to be there for the future: Consider the long haul and how you will be there for your sister in a six months, two years, and at the end of her life. Be sensitive to the fact that life may never feel the same for her. Her reluctance to accept help may never go away. See this as a strength, and remind her how much you admire her for these strengths. Be thoughtful and remember certain days, events or activities might be especially difficult for her.
Watch for the warning signs: The emotional roller coaster that comes with grieving can sometimes seem overwhelming. For most people this will gradually fade, however for some, these emotions will only get worse. Know when normal grief has evolved into a more serious problem and what to do. For more information on depression visit the Canadian Mental Health Association (CAMH) website.
Ultimately it is our connections with others that give us strength, that heal, and that help us move through the challenges of life. Your ability to create a safe and open space for her to share her fears and feelings may lead to her being able to ask and accept the help she needs.
Send your caregiving question to firstname.lastname@example.org. Answers may appear in an upcoming weekly column. Ask Elizabeth does not offer legal guidance, nor does it answer questions about personal health issues.