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You need to keep yourself healthy and well in order to care for others. It's up to you; nobody else is able to do it for you.
Guide: Do something for yourself to avoid caregiver stress. Decide what you want to do (not what you should do, or have a need to do) and write some ideas below. For example, going for a 20 minute walk, or connecting with other care partners.
One possibility for connecting with other Care Partners is through support groups. Consider reaching out to your local Society to inquire about available support groups in your area.
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Some people find that writing and then thinking about what gives them hope can be useful to gain or keep a sense of hope.
Guide: Write below what will give you hope today. What helps you to have hope today is an exercise you can do every day.
Connecting with Hope
Is a video that reflects the hope experience of family caregivers of persons with dementia residing in Long Term Care Facilities. It was funded by the Nursing Research Chair in Aging and Quality of Life (15 minutes).
Use the following link to see the film: www.nurs.ualberta.ca/livingwithhope
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There may be times where you are unable to fulfill your responsibilities. Having back-up support in place can help you and your care partner, should the need arise.
Guide: Choose one person or more than one person who will take over your responsibilities if you are unable to fulfill them. The identified individual(s) is your back-up' to help the person you are caring for.
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Describing your goals can help you become aware of your current situation and personal expectations.
Guide: Write your thoughts about your goals as a care partner.
Some days may be challenging. Being reminded about the things that give you strength might help you.
Guide: Think about the things that help you and give you strength.
Some people find it helpful to write or talk about their story. You might find it useful to write your story here in order to better understand who you are, what brought you to this point in your life, and what strengths you might draw upon.
Guide: Begin to write your story below.
The purpose of this record is to have important documents in a place that you can grab quickly when you need to see a doctor or go to the hospital. The following are suggestions that you may wish to include:
This section includes samples of record keeping templates of medication, health information, and behavioural tracking log that you can use to keep information organized and accessible. You may find that making changes to these samples based on your needs may be helpful to you.
This section contains information about resources to help you as a care partner prepare for possible changes or events, and to connect you with services in your community. This section also includes a contact list template for you to fill in should you desire to do so. This section is based on what other care partners have told us is helpful to them.
Other people providing care to a family member with dementia have asked questions about the changes they experienced. In this section the most common questions are listed with answers provided. We hope these are helpful to you.
You may have other questions that are not listed here. The resources listed in the next section may help you find answers to those questions. Or you can take a look at the first questions section listed here.
Q: If a service I require is not available, how do I access this service?
A: Call your local doctor or the Alzheimer Society. You can find your local Alzheimer Society by checking out our contact page.
Q: How do I find information about disease and the symptoms I should expect?
A: Contact your local doctor or Alzheimer Society about getting information and ask first for their suggestions to how you can get information. Alternatively, try typing your search into the search bar above.
Q: Are there books or websites available that would be of help to me?
A: See the resources section of this toolkit for a list of useful items.
Q: If I need to talk to a doctor or any other health care professional, what should I do?
A: If speaking to your doctor is difficult, try using this tip sheet to prepare for your visit before hand.
Q: What do we do if the doctor doesn't see the changes?
A: Keep track of what you see and use the behavioral tracking form under the Important Health Information section. Then share the written information with your doctor.
Q: What do I do if the doctor won't talk to me?
A: Have the person you are caring for write a note, or tell the doctor that they agree that you are to have all the information about them and that they want the doctor to talk with you.
Q: How do I find information on medications?
A: You should consult locally with the pharmacist first. Pharmacies give information packages on the medication, they will also usually book appointments to discuss medications and side effects.
Q: Is counselling available?
A: Contact your local Alzheimer Society for information. Alternately, you may be able to pay for it privately if it is available in your community.
Q: I feel isolated. Are there support groups available?
A: Yes, click on the Help for Dementia tab for more information in your specific area.
Q: Is there someone to help care for my family member at home, or do I have to do it all alone?
A: Your home care contact can help you with this question. Usually there is someone on the healthcare team available to help, but asking friends and family is a good idea too.
Q: If I do not know how to do something for my family member, is there anyone available to teach me and show me?
A: Your nurse or doctor is available to teach and show you how to care for your family member while still at home.
Q: What do I do if I have difficulty responding to my family members' actions?
A: If you feel unsafe, call 911. Otherwise call your local Alzheimer Society or 811, the dementia help line for more assistance.
Q: Why does my family member have changes in appetite and activity level?
A: Often people with dementia have a change in appetite for many different reasons. Contact your family doctor to get more information specific to changes in appetite or activity levels in your family member.
Q: Is there someone to help me communicate with my family member through this process?
A: Communication can be difficult at times. The most important thing is to keep trying. Contact the Alzheimer Society or care home staff for more help.
Q: Who do I contact if I need support for myself as I care for my family member?
A: There may be many sources of personal and professional support available in your circle of family and friends and in your local community. We recommend that you also consider contacting the Alzheimer Society, Health Link 811, or caregiver network to discuss your needs and concerns.
This section contains information on what to expect. Other care partners said they had changes in their lives. You may or may not have these changes.
