Living well - Emotional wellbeing - Living and transforming with loss and grief

Yes, persons with dementia can experience the loss of their abilities, employment, meaningful relationships and activities. Family members also experience many losses. It is normal to grieve these losses. Grief associated with dementia is often misunderstood because it does not follow the accepted pattern of grief following the loss of life. Everyone grieves in their own way and at their own pace. Try to understand that loss and grief are ongoing throughout the process of the disease.

Source: The above information was reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2009). By Us for Us Guide: Living and Transforming with Loss and Grief. Waterloo, Canada, University of Waterloo: MAREP.

After being diagnosed, you will need time to think. Be honest with yourself about the disease because this will help you to communicate and share your grief with others. Take some time to think about what you are going to say about the disease and who you will tell.

The following suggestions might help you to take care of yourself while you are grieving:

• Do not ignore your grief, but take steps to deal with it
• Recognize the reality of what the losses mean to you and acknowledge them
• Do not judge your grief
• Know it is okay to cry, feel sad
• Take the time you need to grieve.
• Treat yourself to something nice
• Give yourself permission to take a break
• Keep humour in your life
• Try to focus on the good things in your life
• Accept the new normal, that you are the same person, but your life is taking a different direction
• Try to stay focused on today and enjoy the moment
• Draw on spirituality by turning to your spiritual leaders or community and use prayer or medication
• Keep a journal

Source: The above information was reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2009). By Us for Us Guide: Living and Transforming with Loss and Grief. Waterloo, Canada, University of Waterloo: MAREP. 

Find a person who has always been there for you and talk to them. Let them know that you "just need to talk". Be open and honest about the disease and what you need from them. Do not assume they will know what you need. It might be helpful to share advice with other people who are experiencing similar issues.

Source: The above information was reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2009). By Us for Us Guide: Living and Transforming with Loss and Grief. Waterloo, Canada, University of Waterloo: MAREP.

Support for dealing with loss and grief can come from a friend, a professional organization (such as the Alzheimer Society) or a professional counsellor. Some tips for getting more support include:

• Spend more time with your family and friends
• Rebuild relationships that are important to you if possible
• Commit to maintaining your relationships and find new ways to be together with those you are close to
• Join your local community centre
• Participate in a local early stage support group or family support group
• Include your family in the process of diagnosis and disease progression
• Build new support networks

Source: The above information was reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2009). By Us for Us Guide: Living and Transforming with Loss and Grief. Waterloo, Canada, University of Waterloo: MAREP.

Becoming knowledgeable about dementia and planning ahead can help with the grieving process over time. You might want to gather information quickly, or take your time. This information will help you to plan ahead for your condition. Here are some more strategies:

• Look for information on how to live positively with the disease
• Look at more than one source of information
• Read reliable information
• Be critical of the information you read
• Recognize that not all information will be suited toward your situation
• Talk to other people experiencing memory loss or other partners in care

Planning ahead can also help you deal with the unknown. The following are suggestions for the planning process:

• Recognize that you may not have control over the progression of the disease, but you can control other parts of your life
• Plan for losses and how you will deal with certain situations (e.g., loss of driver's license, loss of work, need for home care, moving to long-term care)
• Set a realistic goal everyday (exercise, play with the grandchildren, get groceries)
• Set realistic goals for tomorrow the night before
• Treat yourself for meeting your goals (make sure it is something you like)
• Do something positive every day
• Plan for the future, but do not dwell on it (revisit your plan as necessary)

Source: The above information was reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2009). By Us for Us Guide: Living and Transforming with Loss and Grief. Waterloo, Canada, University of Waterloo: MAREP. 

Even though dealing with loss and grief are difficult, it is still possible to find joy and hope while living with dementia. Some people with dementia and their family members talk about the experiences they have had or the strength they have gained that might not have happened if they hadn’t been affected by dementia. Keep a positive outlook. Accepting an illness can be difficult, but this new reality can make room for new possibilities. Experiencing dementia can result in:

• Learning to value yourself and your contributions
• Learning new things about yourself
• Appreciating the small things in life that are often overlooked or taken for granted
• Becoming more compassionate toward other people
• Developing inner strength and confidence
• Developing new skills and talents
• Being open to new ways of learning
• Meeting new friends through a support group

Here are some strategies to help you keep a positive outlook:

• Express your grief through writing, painting, or creating a memory box or album
• Reminisce with others
• Write down your feelings in a journal
• Listen to music or dance

Start your day with a positive affirmation. Some examples include:

• "I am grateful for all that I have received"
• "I can do it"
• "I am not alone"
• Considering starting a gratitude journal to write down your daily affirmations and to acknowledge what you are grateful for. By writing down these positive thoughts, you can build happiness by maintaining a positive outlook.
• Choose a location, such as a favourite chair. At the end of the day, take up a position in this favourite location and reflect on the positive aspects of your day and what you are grateful for.
• Be an advocate for people with dementia and their care partners
• Be proactive about creating a life plan that focuses on relationships, finances and learning about the disease
• Live in the moment

Source: The above information was reprinted with additions with permission from Murray Alzheimer Research and Education Program (MAREP). (2009). By Us for Us Guide: Living and Transforming with Loss and Grief. Waterloo, Canada, University of Waterloo: MAREP.