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.

• Think about the changes your family member/friend may experience as they approach end of life
• Begin to write what type of care you would want your family member/friend to receive at the end of life
• What is most important to your family member/friend?
• Discuss this with other carers and family/friends

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 Dignity in Care: Manitoba Palliative Care Research Unit (Unpublished).

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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.

• Pick one or two activities from the factsheet and try them at your next visit with your relative
• Use this space to write about what worked, and what didn't work with the activity you chose

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. 

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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.

Activity 

Begin to write your advocacy plan by thinking about the questions below.

• What are you hoping to accomplish for your family member/friend? (What is your goal or desired result)
• What is your message?
• Who should you talk to? Who needs to know about your goal?
• Consider the perspective of the person or persons you are talking with.

For tips on advocacy and effective communication with staff, please visit the following sections in Seeds of Hope.

Communicating with Staff

Advocating for Care

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Reflect on how you would like to communicate and collaborate with the staff at the care home where your family member or friend resides. Use the questions below to gather ideas for sharing with the team.

• What do you want the facility to know about you and your family member or friend? Create a short list of points to share, including pictures if you wish.
• What should your health care providers know about your family member or friend as a person to provide the best care possible?
• What would you want any staff member to know about you or them as a person?
• What are their likes, dislikes, hobbies, interests, favourite foods, and previous occupations?
• Are there special qualities you would like the staff to recognize?
• Are there key roles or relationships you want the staff to be aware of?
• Are there specific concerns or important beliefs you would like the staff to consider?

Additionally:

• Get to know the staff who are caring for your family member or friend. Make a list of their names.
• Make a list of what is most important to you about the care provided for your family member or friend. For example, "My wife is very proud of her appearance."

For tips on advocacy and effective communication with staff, please visit the following sections in Seeds of Hope.

Communicating with Staff

Advocating for Care

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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:

• Write a list of what you feel guilty about (no need for explanations - this is your confidential list)
• Beside the list, write some ideas that you can do to address the underlying reason for the guilt
• What is one small thing that you can forgive yourself for, today?
• Imagine if this list belonged to a friend, what would you tell them?

For more information and other activities - please see the Resources section.

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Advocacy and Communicating with Staff

After the move: Communicating and Working with the staff Strategies to help you in your role as a care partner

All About Me

Adjusting After a Move

Working with Care Providers

Person-Centred Language Guidelines

Seeds of Hope Family Learning Series (Session 14 - Taking Care of You: Grief and Self Care)

Living with Dementia

Ambiguous Loss & Grief - brain Xchange Webinar

Reclaiming Yourself

Visiting a Person with Dementia

The Visitor Guest Book: A Tool to Stay Informed

Helping children understand Dementia

Dementia Resources

Alzheimer Society: About Dementia

Canadian Hospice and Palliative Care Association 

Changes Toolkit

Health Canada: Natural Health Products

Heart and Stroke Foundation

Health Canada: Drug Products 

Living With Dementia 

Medline Plus (U.S.)

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.

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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:

• Changes in routine as your family member/friend moves into care
• Sleeping difficulties
• Changes in hobbies, leisure activities
• Feeling guilty about not always being with your family member/friend in care
• Planning your life around your own schedule rather than your family member's/friend's schedule
• Changes to your financial situation, now that you are paying for a care facility

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."

When your family member or friend moves into a care facility, it can impact your physical, mental, and spiritual health. Here are some changes you might experience:

Physical Changes

• Fatigue
• Weight loss or gain
• Appetite changes

Mental and Emotional Changes

• Sadness
• Loneliness
• Anxiety
• Anger
• Guilt
• Relief
• Confusion
• Mood swings
• Grief
• Denial

Spiritual and Identity Changes

• Loss of faith
• Loss of identity
• Feeling like an outsider
• Isolation

Insights from Others Who Have Experienced These Changes

• "You feel like you've lost control."
• "One must continually come and deal with waves of loss."
• "You go out, 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 and 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."
• "Uncertainty is a worry."
• "You're in the forest and can't get out."
• "It's like survivor's guilt, in some ways; you feel you are surviving and living your life, and they're not. So it's 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 and who that person was, but they're still there, and there are 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 because you're in denial about it. We're conditioned to care for that person and not complain."
• "And then the stigma when you do put them in. You've got the people saying, 'It's about time you put him in,' and then the other people say, '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 and just what gives you pleasure daily with friends and family."

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Does this meet your expectations?