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This section consists of activities about you. It is important as it helps you to reflect on your past, present and future experiences both as an individual and care partner. You are encouraged to think about changes in your life, along with your hopes and goals.
Each of the activities in this section has a brief guide with some ideas to get you started. You may decide which activities you choose to do and how to do them.
You can keep this private or share it with others. That is up to you.
Guide: Write your thoughts about the goals of care you wish your family member/friend to receive as they approach end of life, based on previous discussions or understanding of your family member/friend's wishes. Remember to consider supports that you need as well.
The facility and staff may want more detailed information, but this activity is to get you to begin to think about the goals for care at the end of life, now.
You can also see the Preparing for the future question prompt sheet, designed by and used with the permission of Genevieve Thompson*. It was designed to help family caregivers of persons living with dementia with communication between family members and care facility staff.
*Thompson, Genevieve. 2015. Preparing for the Future: Learning about Dementia and Care near the End of Life. Dignity in Care: Manitoba Palliative Care Research Unit (Unpublished).
, , Download File
Communicating with individuals with dementia can be difficult, however there are many strategies that family caregivers can use to improve the quality of their visits.
Guide: look at the "Tips on How to Interact with a Person with Dementia" factsheet to learn more about how to interact with your relative with dementia.
Remember: Individuals with dementia can experience frequent changes in mood, therefore an activity that did not work today, may work another day and vice versa. For this reason, it is important to keep trying the activities and tracking which ones you used.
,An important practice for carers of a person in care is advocating for them, meaning acting to support them, when they can’t or choose not to speak for themselves.
Guide: Begin to write your advocacy plan by thinking about the questions below.
For tips on advocacy and communicating with staff, see the helpful resources section.
,Working with care home staff so they can meet your family member’s unique needs requires communication and relationship building on both sides.
Guide: Think about how you would like to communicate and work with staff at the care home your family member/friend is at. Answer the questions below to get some ideas about what to communicate with staff.
For tips on advocacy and communicating with staff, see the helpful resources section.
,Guilt is a difficult and complex emotion. It is normal to feel guilty after your family member/friend moves into a care facility. You are not alone. Most caregivers feel some guilt after their family member/friend moves. Guilt may be related to feeling responsible for their illness. You may blame yourself for their move to care, and feel as if you "didn't do enough". You may feel guilty that your family member/friend is not going to get the same care that you provided. You may also feel guilty because you feel some relief that you are no longer responsible for your family member/friend's care around the clock.
Below is a written activity that may help you deal with your guilt.
Guide:
For more information and other activities - please see the Resources section.
,Advocacy and Communicating with Staff:
Person-Centred Language Guidelines
Grieving and Loss:
Seeds of Hope Family Learning Series (Session 14 - Taking Care of You: Grief and Self Care)
Ambiguous Loss & Grief - brainXchange Webinar
Transitioning to Long-term Care:
Visiting a Person with Dementia
The Visitor Guest Book: A Tool to Stay Informed
Other Information:
Helping children understand Dementia
Links to other fact sheets for caregivers by the Alzheimer Society, ranging from tips for after the move, care for the caregiver, maintaining relationships, taking a break, financial planning, and managing conflict.
Websites and Online Communities:
Alzheimer Society: About Dementia
Dementia is a general term that refers to a variety of brain disorders. Physical changes in the brain cause dementia. Learn more in this section about dementia, its impact on the brain, and how to keep your brain healthy.
Canadian Hospice and Palliative Care Association
The Canadian Hospice Palliative Care Association (CHPCA) offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened. You will find a list of palliative care programs in different provinces and resources.
The Changes Toolkit has activities and resources to help palliative care patients and their family caregivers deal with transitions.
Health Canada: Natural Health Products
The Natural Products site at Health Canada provides information on “herbal” or other natural products. Go to the Health Canada website (use the link above). Click on: (1) English, (2) Drugs and Health Products (on the left side), (3) Natural Health Products (also on the left side).
The Heart and Stroke Foundation, a volunteer-based health charity, leads in eliminating heart disease and stroke and reducing their impact through the advancement of research and its application, the promotion of healthy living, and advocacy. On this website you will find health information about heart disease, stroke and healthy living, as well as multicultural resources.
The Drug Products site at Health Canada provides information on drugs approved for use in Canada. Go to the Health Canada website (use link above). Click on: (1) English, (2) Drugs and Health Products (on the left side), (3) Drug Products, (4) Drug Product Database, (5) Access the Drug Product Database.
Living With Dementia was developed for persons with dementia and their family care partners. It contains helpful information and resources to help prepare for the road ahead.
Medline Plus contains information on a wide range of diseases, medications, and other health topics. Some information is available in multiple languages or in multiple formats (e.g. text, video, and interactive tutorial).
Books about Real-Life Dementia Experiences:
Dancing in the Elevator by Barbara Schulman, Beverly Grostern and Donna Lordon.
This book contains a compilation of anecdotes about life with Alzheimer’s disease.
Dancing with Dementia by Christine Bryden
This book is a vivid account of a top civil servant and mother of three who was diagnosed with dementia at age 46. The author writes about the day-to-day challenges she deals with as a person affected by dementia.
Guide: Write contact information of people you may wish to contact during your changes. These can include community resources.
For example: Family doctor, nurse practitioner, home care contact, financial advisor, lawyer, community center, spiritual support, grocer who will deliver food, pharmacist, friends, and family members.
Consider storing this list in your smart phone or other electronic device for quick access in an emergency.
,When your family member/friend moves into a care facility, your daily activities will change. You may notice changes in tasks, sleeping patterns, eating habits, diet, career, or social interactions. This can include anything that affects or alters the way you are used to living.
Examples:
Examples from others who have experienced these changes:
"There's the loss of a job, because I took early retirement. And I mean, I loved my job and I loved all the people I worked with, and it gave me that sense of empowerment. It also takes away some of your identity."
"Once you put somebody into care, that because you've been the caregiver for so long, it's hard to-you're still planning your life around that person."
"I think more about his goals than my goals."
"Think about what you want to do for yourself. Then I realized, you know what, I don't know what to do any more."
"I went from doing everything, like deciding what he'd wear, when he'd shower, when he'd shave, all of that stuff, that you're still the caregiver for that person, but you're-well, initially you become the parent to that person instead of the spouse or the child or whatever-you change your relationship. It was kind of difficult to live with somebody that had been your partner and is now your child sort of thing, and then you relinquish that to somebody else."
"Learning to plan your day around you instead of planning your day around your visits to your person that you're caring for."
"So I was still planning my life around his schedule, and you're right, it's something you have to do, to separate from that and plan your life around your schedule and fit him in. You still are taking care of that person, you're still an advocate for that person, but then you're fitting them into your schedule, not your schedule around them. It's something that's not easy to do."
These are changes in physical, mental and spiritual health that you may experience when your family member/friend moves into a care facility.
Examples:
Examples from others who have experienced these changes:
"You feel like you've lost control."
". . . and one must continually come and deal with waves of loss."
"You go out and you leave and the door behind you locks. All you could see was his new pyjamas and his eye in the door, that cracked double door and you are left with that. It was the hardest thing and the most difficult day of my life."
"Then at night, well, that was the worst part because I couldn't sleep . . . I was going downhill myself. Losing weight . . . it was just turmoil really."
"Uncertainty is a worry."
"You're in the forest and you can't get out."
"It's like survivor's guilt, in some ways; like, you feel you are surviving and living your life, and they're not. So it's kind of like being the only one off the train wreck. But is it guilt or is it grief? They talk about that ambiguous loss, because you've lost the person-you know, you've lost who that person was, but they're still there and there's still parts of them there."
"The psychological stress on the caregiver, you know. Everybody is very focused on the person who has the disease, . . . and a lot of the caregivers, . . . they're the ones dying first, probably from stress."
"A lot of it is . . . €˜cause you're in denial about it. We're conditioned to take care of that person and . . . not complain about it."
"And then the stigma when you do put them in. You've got the people that are saying, €˜it's about time you put him in', and then there's the other people who are, like, €˜he didn't seem that bad. You were managing'. You know, €˜How could you just warehouse him?'"
"You have to find it (hope) within yourself, uh, and just what gives you pleasure each day with friends and family."
