作为肝病患者的护理者，您可能感同身受着您的挚爱经历的情绪：恐惧，孤立甚至愤怒。 加拿大肝脏基金会的工作之一，就是帮助你将这些消极情绪变成希望和力量。 在应对不同程度的疾病中，为了避免时常遇到的精疲力尽的情形，您不只要照顾好病人，也同样应该照顾好自己。 该页面上的信息，从预期到加拿大肝脏基金会提供的支持计划，都是专门为护理者而设计的。 想要求更多有关护理者的资源，或想了解更多现有的支援，请 请联系我们。
Common questions and concerns for caregivers
As liver disease progresses, the scarring of the liver continues, and your loved one may develop symptoms and complications which may include:
- Loss of appetite, nausea and vomiting, weight loss
- A yellow discoloration of the skin and whites of the eyes (jaundice)
- Itching (pruritus) which is primarily caused by retention of bile products in the skin
- Fluid build-up and painful swelling of the legs (edema) and abdomen (ascites)
- Confusion and other mental changes, potentially leading to coma
- Swelling or rupture of veins in the esophagus from increased blood pressure in the blood vessels
Even when complications develop, they can often be treated. Please discuss treatment options with your loved one’s healthcare provider.
Before the appointment:
- List of all new symptoms (when it started and what it feels like) that you would like to discuss at the appointment.
- Write down all of the medication side effects your loved one is experiencing, and ask the doctor how to manage them.
- List of questions/concerns and prioritize them (place them in order of importance).
- Ensure you know how to prepare your loved one for medical procedure appointments (e.g. food and fluid restrictions).
- Help your loved one make a folder of all the essential medical information (medical history, test results, medication information, upcoming procedures, medical tips/recommendations etc.) and bring them to your appointments.
- Make arrangements and plan for how your loved one will be getting to and from their appointments.
- If you are unsure, call the office beforehand to confirm the date and time of your loved one’s appointment.
During the appointment:
- Take note of what is being discussed in case your loved one forgets any of this information.
- Let the healthcare provider know about the presence of symptoms and ask how they can be treated.
- Ask for clarification of any medical terms that you don’t understand.
- When your loved one is prescribed a medication, ask about what the drug is for and whether there are any side effects and how you can lessen them.
- Ask for clarification and interpretation of all test results.
Questions to ask:
- How will treatment affect my loved one’s daily life?
- Is there a special diet my loved one should be following or any foods/drinks they should avoid?
- How can we contact you in case we have any questions between now and the next appointment?
- Is there anything else we can do at home to slow down the progression of the disease?
- Are there any activities that can help my loved one stay strong? What activities should be avoided?
- What are the chances for success with the treatment you’ve provided?
- What are the support services available to us?
There are over 100 liver diseases: some that are caused by viruses (such as hepatitis A, B and C), some that are inherited (like hemochromatosis, Wilson disease) and others that are caused by lifestyle and the environment. If your loved one has viral hepatitis (hepatitis A, hepatitis B or hepatitis C), talk to your healthcare provider about prevention and getting immunized against hepatitis A and hepatitis B.
For more information on specific liver diseases and how to protect yourself, please read our liver diseases section.
If your child has liver disease, the treatment varies with the cause. In general, your child’s physician may prescribe a special baby formula as well as vitamin supplements. Some metabolic diseases, such as galactosemia, require specific diets or drug treatments. For some diseases, such as biliary atresia, surgery on the liver is required.
In many cases, childhood liver diseases can be managed or controlled through diet, medications or other interventions. If the liver is too damaged to function effectively, a liver transplant may be necessary during the first year of your baby’s life.
Please talk to your healthcare provider regarding the specific diet and treatments your child may require.
A yellow discolouration of the skin and whites of the eyes (jaundice) that does not disappear is a sign of ongoing liver disease and generally indicates severe liver problems. In an infant who appears to recover from a liver disorder, the return of jaundice is a sign of ongoing disease.
Viral infections and biliary atresia are extremely unlikely to affect more than one person in a family. Metabolic disorders of the liver are usually inherited and therefore may occur in more than one family member. Older children in the family should be checked for these diseases, and infants should be followed carefully after birth. Prenatal diagnosis is available for some of these disorders, and genetic counselling may be useful to families who have a history of hereditary liver disease.
For more information on specific liver diseases and to find which may be hereditary, please read our liver diseases section.
These helpful tips and recommendations were developed in part by people who have cared for those with liver disease.
- With new diagnoses, it’s important to do whatever it takes to get stabilized as soon as possible. This way, you can focus on what you need to do to change matters for the better.
- Don’t be ashamed to ask for help with the role of caregiving. Seek out others who could possibly share the caregiving load with you in order to avoid burnout. This could be family members, neighbours, friends, or members of your social/religious circles. Consider weekly family meetings to keep your loved ones informed on important matters and to check in on how everyone is feeling. It’s also a great way to plan out special time for families to spend together.
- Do not neglect your own needs, both emotional and physical. It is crucial to remember that you also need a break from the disease and the toll it can take on you. This includes continuing to do the things that bring you joy. The less neglected you feel, the better you are at helping your loved one achieve optimal health.
- Knowledge is power. Read a lot and gain as much insight about your loved one’s condition as possible. In doing so, you become informed of the best ways to help them strive.
- Give back to the community and volunteer for the Canadian Liver Foundation if you can.
- Plan for the worst-case scenario but always hope for the best.
- Don’t lose hope. A positive mindset uncovers great change. Aim to take one day at a time and make the most out of every situation.
- Understand that frustration placed on you by the one you are caring for is not purposeful or personal. The illness process takes a significant toll on one’s physical well-being, as well as their emotional well-being. Try your best to put yourself in their shoes.
- Having a support network is vital for your own emotional wellbeing. The Canadian Liver Foundation is here to help you access resources like the Peer Support Network where you can connect with others who are going through the same experiences that you are.
- Journal your thoughts and feelings. Don’t be ashamed to reflect on the things going on in your life. Addressing your issues is the first step towards finding a solution. Also, when journaling, use colour. Colour makes life seem much brighter.
- Start a list of coping skills that you either have or are willing to adopt in order to deal with and work through any stressors that may come your way. Visit this website to add more coping strategies to your list!
- Spending time with the one you’re caring for is extremely important. You might not be actively doing anything, but the fact that they have somebody there with them during such a vulnerable time could do wonders for them.
- Aim to take one day at a time and make the most out of every situation. Do not put an end to doing the things that make you happy.
- Ask your healthcare provider, employer, social assistance worker, social worker or someone in your social circle to help you find the resources you need.
- Do not leave the doctor’s office until you are fully satisfied with your understanding of the information provided.
Finances and other assistance tips
- If your financial circumstances change, rent and mortgage payments may become difficult to manage. If you think that your housing situation will be affected due to a change in income, check with your bank or financial advisor to see if they may be able to provide some short-term solutions for you and your family.
- Many employers belong to an Employee Assistance Program (EAP) and provide free counselling services to employees. Contact your benefits advisor at your workplace for details on how to access this support.
- If your loved one becomes very sick or has difficulty getting dressed, walking or bathing, you may be able to have a nurse or home care provider come to your home, so your loved one does not have to enter a hospital. Talk to your healthcare provider who can arrange home care services. A nurse may be able to arrange for other support to allow your loved one to stay at home.
当某人最初被诊断患有肝脏疾病时，他们可能会有很多问题想问，关于他们的病情有，病情如何影响他们的生活方式，以及可能采取什么治疗或其他干预措施。 作为护理者，您对病人的病情可能有相同的疑问。 请记得，我们既可以为您，也可以为您的家人提供帮助。 全国帮助热线： 咨询热线提供了一个资源，令您和您的亲人在诊断之后有一个可以解难答疑的地方，帮助您更好地了解相关疾病，并为您提供所需的资源。 你可以致电 1-800-563 5483 , 星期一至五从9AM到5pm EST。 病友支持网络： 这是一个全国性病友网络，供您与他人交流及分享经验。 它由加拿大肝脏基金会组织，将加拿大与肝病相关的家庭联系一起 —- 家里有肝病患者的，家里有护理肝病患者的，家里曾被诊断为肝病的 —- 供您与有过相同经历的人相互交流。 如果您想与您所在地区的病友支持者建立联系，或者想加入病友支持网络，请致电全国帮助热线 1-800-563 5483 , 或发送电子邮件 Chinese@liver.ca
It is important to know that there is help available for both you and your loved one. Below are some additional resources that may be of interest to you
- Caregiver Assistance from the Government of Canada
- Carers Canada (National Caregivers’ Coalition)
- Financial Budget Calculator Tools from the Government of Canada
- Home Care Services by Province/Territory (From Canadian Hospice Palliative Care Association)
- How to Meditate
- How to Stay Healthy and Active as a Caregiver
- Liver-Friendly Recipes (Canadian Liver Foundation)
- Liver-Friendly Recipes (Liver Support)
- Liver-Friendly Recipes (The Spruce Eats)
- Provincial/Territorial Caring for Seniors Forum from the Government of Canada
- Self-care Retreats by Province/Territory