Meaningful Messages: Supporting a Loved One with a New Disability or Chronic Illness
Updated: Sep 11, 2020
***Disclaimer: This blog is for informational purposes only and does not provide medical, legal, or health advice.
When a person is diagnosed with a new disability or illness, their life, and the lives of their family members, are forever changed.
Learning how to cope and adjust to a new disability or illness is not only extremely challenging for the person directly affected, but it also can be a huge learning curve for a partner or a close family member to understand how to be there for their loved one when they need them most. Here are just a few ideas for family members to consider as they help their loved one cope with their ‘new normal’.
Your loved one may be dealing with a rollercoaster of emotions: anger, disbelief, guilt, grief, resentment, anxiety, depression, post-traumatic stress, and other feelings. They will need time to learn how to cope with their new disability or illness. Their timeline will be unique and specific to them.
Having someone in their life who is caring, compassionate, strong, and supportive can give them solace during these unprecedented and unpredictable times. Listening to them without sharing your own impressions, advice, or recommendations — really listening — can be very helpful when your loved one’s mind may be racing and overloaded.
They may not feel ready yet to talk about how they are doing emotionally, mentally, and physically. They might need time and space before they can open up about what they are going through. Your loved one will decide when they are ready to talk, how much detail they are prepared to share, and what kind of help they would like from you and important others in their life.
What they need from moment to moment or day by day may change depending on their situation at any given time, especially if they continue to go through constant changes, stressors, or challenges. Let them tell you what they need from you. Follow their lead.
They could be so overwhelmed that they may not be in a position to listen, receive, and process all of the medical, health, and resource information they are receiving on a daily and weekly basis. If they are feeling overwhelmed and stressed, they may ask you if you are comfortable being a point person or main contact for the healthcare team. If you are able and open to help them in this area, you have a unique position to possibly become the recorder, advocate, navigator, and communicator when they are not yet ready to take on these responsibilities. By helping them with these matters, you will be making a huge difference in this early stage of their new disability or illness.
You can assist by being informed about their specific disability and needs and acting as a personal sounding board while they try to digest what they are learning. Gather information from your loved one’s medical and healthcare team, with your loved one’s consent, to learn more about their diagnosis, prognosis, symptoms, risks, important future considerations and resources available that can help your loved one understand how to move forward with their life at a slow and steady pace. Caregivers may also begin to learn skills, routines, and practices to help support their loved ones in the community.
Your role is very important, valuable, and recognized. You will likely need as much support as they will, so learning about caregiver resources for you is also essential. There are many resources out there for carers, such as the Ontario Caregiver Organization
Of course, your loved one does not get to pass all the responsibility onto you indefinitely and that is certainly not the expectation. Depending on their disability or illness, their capacity to self-manage will likely increase slowly over time. Your role at the beginning of their journey will be very valuable to help them as they learn to set themselves up for a fulfilling future.
No one truly understands what having a disability or illness is like unless they have one themselves. Even when two people have the same kind of disability or illness, there are huge differences in regards to the way it may affect them and their life depending on their specific diagnosis and prognosis, other health issues they have, and a range of other factors. It is important to recognize that the person with a disability or illness knows themselves and what they need best. This needs to be respected and acknowledged.
If your loved one is not coping or adjusting well, try to empathize with them and know that they may need more time before they start taking action. They are doing the best they can right now.
It is normal for family members to feel frustrated and upset over time if their loved one does not seem to be moving forward with their life. To help manage these feelings, it might be useful to imagine yourself in their shoes and think about how you might respond if you were in the same situation. There is no right way to cope or adjust. Everyone has their own path. You are on this journey together and need to maintain open, and positive communication. Talking about how you are feeling will also help your loved one understand how you are being impacted and what your needs are as well.
Your loved one will be encouraged by their healthcare team to learn skills, routines, and tasks related to daily living, within their current abilities, in order to become as independent as possible with their new disability or illness. This could include basic care tasks (dressing, bathing, feeding, etc.), exercise/strengthening tasks, independent living tasks (cooking, shopping, banking, household tasks, etc.) and other activities.
Low motivation, low energy, a limited belief in themselves and their ability to learn new things or perform them well could affect your loved one’s desire to do these tasks. You are their biggest cheerleader — your encouragement and “tough love” may be what helps them get started. Beginning with small and realistic goals and moving on to more challenging but manageable tasks is key for your loved one to build higher confidence and acquire more complex skills over time within the context of their disability or illness.
You know them better than most and will have a sense of when to push and be firm or when to give them space. Ask how you can continue assisting them towards their goals. Be there for them in the best way you know how. You are helping them more than you will truly ever know.
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