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Changes in the physical environment include the change of location from home or hospital to long-term care, as well as changes to your home now that your family member/friend is living in a care home.
Examples:
Examples from others who have experienced these changes:
"I'm not very motivated to do anything at home . . . I used to cook good meals for my husband and myself, now I don't want to cook at all...."
"But then suddenly, you're living at home alone, and the biggest project was downsizing. I'm still downsizing. We've got so many things that I have a hard time getting rid of, but still, bit by bit-"
"Then, here comes the downsizing, and are you going to stay in your house or move to an apartment; that's things you have to think about, for sure."
"When we talk about lightening the load, the major load is the material attachments. So I let the material stuff go, and I had a better life. When I look back, that was the best thing that I have ever done."
When your family member moves into a care facility, roles and relationships often shift significantly. Some of these changes include:
"After I initiated care from others, what happened [was] I became the daughter again."
"I didn't have to, you know, be on guard all the time, which again was freedom within myself . . . but I looked forward to going up there every day to visit [her]."
"It's like a, uh, permanent part-time job! You know, to a certain degree."
"I hear this all the time: you've got to cut down, you've got to take care of yourself.'"
"Think about what you want to do for yourself. Then I realized, you know what, I don't know what to do anymore.' I'd been looking after my mom and dad, and that's the best I can do."
"I hope there would somehow be some teaching to show the whole family that they must stand together for it to work well. Because even though there's a facility for your loved one, it still takes family to keep that loved one content."
"But I also accept that this is where we are and that there isn't anything you can really do to change the situation other than see him as often as possible and give him support."
Changes in negotiating or advocating for care are related to supporting your family member in a care facility.
Examples:
Examples from others who have experienced these changes:
"It's still-it's a difficult transition, €˜cause you feel like you've lost control."
"I really didn't know where to go to find information. It seemed like a big void out there, and maybe I was too emotionally involved to comprehend or understand."
"Communication within the medical community; it's a power play."
"It's been a tough journey."
"Everybody just disappeared. Friends disappeared."
"You know he's safe. That's all you want: you want somebody to be safe and hopefully not distressed."
This section contains information about resources to help you as a carer prepare for possible changes or events, and to connect you with services in your community. It has suggestions and information to help you, and includes a contact list. It is based on what other carers have told us.
This section contains information on what to expect, as well what other care partners said they had change in their lives. You may or may not have these changes.
Videos:
The Caregiver's Journey When a Family Member Lives in Long Term Care: Cal's Story.
The Caregiver's Journey When a Family Member Lives in Long Term Care: Edith's Story.
The Caregiver's Journey When a Family Member Lives in Long Term Care: Jennifer's Story.
Other people with a family member/friend with dementia in care have asked questions about the changes they may experience and the support available to them. In this section, the most common questions are listed, and answers are provided.
Q: Is there a list of contact names and numbers of people who can help me?
A: See our List of Resources for helpful books, websites and telephone numbers.
Q: What do I do if my family member’s doctor won’t talk to me?
A: Talk with the staff at the care home to see if they can help you connect with your family member’s doctor or give you additional information.
Q: Is counselling available?
A: Contact your family physician or the mental health organization in your community to explore counselling services.
Q: I feel isolated. Are there support groups available?
A: Contact your local Alzheimer Society to learn about support and support group options.
Q: What do I do if I have trouble communicating with care home staff about my family member’s needs?
A: Visit Advocating for Care and Communicating with Staff in Seeds of Hope for tips on communicating with staff.
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. Talk to the facility staff, Alzheimer Society or your family doctor to get more information specific to changes in appetite or activity levels in your family member.
Q: How do I know if I am visiting my family member in the care home too much or too little?
A: It is up to you to decide how much you visit your family member. The amount of time varies from person to person. It will also change depending on the condition of your family member and your personal needs. It is important to remember that you also need to care for yourself as a caregiver. Finding balance in your life with your family member in LTC and your life outside of LTC is important. It will help you deal with the changes you yourself experience. Please see the article “Building a New Life”
Q: Who do I contact if I need support for myself?
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, or Health Link in your region, or caregiver network to discuss your needs and concerns.
Q: Will my relationship with my family member change now that they are in care?
A: Changes may occur in your relationship with your family member. See this toolkit's "What are possible changes in roles and relationships?" section for more information.
Q: I feel overwhelmed about downsizing now that my family member is in care. How do I start this process?
A: See the Tips for Downsizing Your Home.
Q: Now that my family member is in care, I feel very lonely. What can I do about this?
A: Loneliness is a very normal feeling that many carers have. See the Older Adults and Loneliness fact sheet in the Resources section of this toolkit for tips on how to deal with the loneliness you are experiencing.
Your well-being, both physical and mental, is crucial for you to be able to support others effectively. It's a personal responsibility, and no one else can do it for you. Here are two activities that might help.
Create a list of activities that help you manage the stress associated with caregiving. Focus on what you truly want to do, rather than what you feel you should or need to do. Jot down some ideas—for example, taking a walk or connecting with other care partners. Consider how you can incorporate these into your routine, especially if your schedule has recently changed or might change in the future.
Take some time to focus on a self-care activity.
It's okay if you can't manage it today; give it another go tomorrow.
If you want to connect with other care partners online, please visit our new virtual discussion space, Dementia Talks! Canada, to join the conversation!
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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: Hope is important for everyone, but especially for people who may be experiencing grief and loss (also see the Resources section for information on grief and loss). Write below what gives you hope today. Thinking about what helps you to have hope today is an exercise you can do every day. Some ideas include:
Connecting with Hope
This is a video that reflects the hope experience of family caregivers of persons with dementia living 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: Connecting with Hope
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Some days may be challenging. Being reminded about the things that give you strength might help you.
Guide: Think about the things or people that help you and give you strength. For example, think about activities or accomplishments that made you feel your best. What or who makes you feel good or strong?
Describing your goals can help you become aware of your current situation and personal expectations.
Guide: Write below your thoughts about your goals as a partner in your family member/friend's care (this may change over time).
