Living well - Emotional wellbeing - Coping with day-to-day emotions and feelings

When people are distressed, it can often be difficult for them to find the right words to express their emotions and determine why they are feeling distressed. Because each individual experiences life with dementia in different ways, expressing your emotions may become harder for you. It may also be harder to understand what people are saying to you. Remember to take your time when you are trying to express yourself. It is okay to tell people that you need more time for thinking, communicating and remembering things. If you do not understand something, it is okay to ask someone to repeat it. Also, if there are too many people around or it is too noisy, ask to go somewhere quiet. It is okay if you forget a thought, it may come back to you.

It is important to find meaningful ways to express grief. This can involve crying, but there are other ways to express grief which you may find helpful, such as through:

• Writing – songs, poetry, sayings, stories
• Painting or other art forms
• Capturing one's biography – written, audio, or video-recorded
• Creating a memory box/album
• Reminiscing with others
• Engaging in other valued activities
• Listening to music or dancing

Writing down your emotions might also help you verbalize them. Consider beginning a journal. Many people find that writing things down is a good way to reflect on and express how they are feeling. You may experience a wide range of emotions and feelings throughout the disease process, and this may include loss and grief, which can cause physical side effects. Keeping a journal may help you to identify where you are hurting, and how you are hurting, so you are then able to take steps to deal with grief. Additionally, keeping a journal is a good reference for doctor's appointments and can help you recall emotional reactions and describe them to your doctor.

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

You are not going crazy, but having dementia might make you feel like you are losing control. Telling other people around you how you feel can help. Reflect on what it is that is making you feel like you are losing control and talk with others about how they can support you in feeling more in control. It is also a good idea to share these emotions with others who have dementia.

Source: The information above was compiled with permission from Australian Government: Department of Health and Ageing. (2006). Living with Dementia: A Booklet for People with Dementia. Canberra, Australia: Commonwealth of Australia.

It is natural to wonder why this is happening to you and to feel angry about being diagnosed with a dementia. It is also normal to be in a bad mood sometimes. All human beings have good days and bad days and this is no different for those experiencing dementia. When you are having a bad day, remember tomorrow is a new day. Try to do something that you enjoy to make you feel better. If you are feeling angry, try talking to a counsellor who knows about dementia. Your doctor or the Alzheimer's Society in your community can recommend a counsellor for you.

Source: The information above was compiled with permission from Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada.

Receiving a diagnosis of dementia can be overwhelming, and this may cause different reactions and emotions to surface. The grieving process does not have a set timeframe, and is often ongoing throughout the disease process. Dealing with emotions and feelings of loss and grief is different for each person with dementia and each partner in care. Some people are able to adjust more quickly, but it is important to know it is okay to cry, and to allow yourself time to be sad and to release those feelings.

Try talking to the people in your life you are close with and trust. If you continue to feel sad for a long period of time make sure to tell you doctor. Chronic feelings of sadness may be a sign of depression, in which case, you doctor can help you find ways to deal with depression.

Other things that might help include:

• Spending time with a friend or your family
• Participating in an activity you enjoy
• Watching a funny TV show or movie
• Letting yourself have a good cry
• Focusing on the skills and abilities you still have
• Becoming knowledgeable about the disease by seeking out reliable information about living positively with the disease
• Joining a support group, to connect with others who are experiencing memory loss or who are partners in care
• Focusing on living each day and enjoying the moment
• Drawing on your spirituality; use meditation or prayer to cope
• Taking steps to plan for the future

*See section below on 'How to Manage Depression'.

Source: The above information was compiled 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.
• Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada.
• Australian Government: Department of Health and Ageing. (2006). Living with Dementia: A Booklet for People with Dementia. Canberra, Australia: Commonwealth of Australia.

You might notice yourself getting lost, forgetting familiar faces, and struggling to find the right words. The first thing you need to do is to accept your diagnosis. Once you begin taking steps to accept the diagnosis, explaining to people that you are having trouble with your memory because of a dementia may help to ease those feelings of embarrassment. Remember, people can be very understanding if they know about the problem. Also, a good sense of humour is essential. You need to be able to laugh at yourself. If you laugh at yourself, others will laugh with you.

Source: The information above was compiled with permission from Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada.

It is common to feel lonely when you think that people around you can't understand what you are going through. Talking about your emotions with people who care about you can help. Be sure to explain what you know about dementia to your family and friends, or have someone else do it. It is important that they understand what you are going through so that they can help. If you just need them listen, tell them that. Make sure to tell your friends and family how much their visits mean to you. It is also helpful to talk with other people who have been diagnosed with a dementia.

Your local Alzheimer Society will be able to connect you with other people who are having the same experiences as you. Work hard to remain engaged and maintain your connections to your community. These connections can help combat the loneliness you may feel from time to time.

Source: The information above was compiled with permission from Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada.

It is natural to feel frustrated when activities that were once so easy become more challenging. This is one of the most common emotions people with dementia experience. Tell people you trust why you are frustrated. They might be able to help you and offer advice. Discuss with others how you might adapt a task or activity so you can still perform it independently. Do not be afraid to ask for help and focus on what you are able to do now. By focusing on the positives, you may be able to minimize the feelings of frustration.

Other ways to deal with feelings of frustration include:

• Make sure to pace yourself. Try not to overwhelm yourself by taking on too many responsibilities or activities at once
• When an environment becomes too noisy, try to find a quiet spot where you can let your mind clear. You may also find it helpful to wear headphones or earplugs to drown out the noise. Additionally, headphones can be a helpful way to concentrate when you are watching TV.
• When you feel frustrated, try taking a nap to re-energize and focus
• It can be frustrating to make decisions when you have too many options, so try to remove clutter. For example, keep your toothpaste and toothbrush on the counter in the bathroom to access easily, while avoiding getting sidetracked with other options in cabinets or drawers.
• Keep things simple!

Source: The information above was compiled with permission from:

• Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada.
• McKinlay, M. (2011, March). Adapting to change. Presented at A Changing Melody International, Toronto, Ontario.

It is natural to feel guilty about asking for help because we value our independence and do not want to be a burden on others. Part of the problem is that independence is valued so much more in our culture than the value we place on interdependence and depending on one another. Not many of us like to rely on other people for help. But you should not feel guilty about asking for help.

If others ask you for help, you would likely assist them. Asking for and being okay with receiving help and support from others is important for living well with dementia. Help and support from others is also important for family members to feel well in their care roles. When you are feeling guilty make sure to talk honestly and openly about how you are feeling with people you trust.

Source: The information above was compiled with permission from Alzheimer Society of Canada. (2003). Just for You. Toronto, Canada: Alzheimer Society of Canada

There are many things that you can do to help you feel more positive about living with dementia:

• Focus on what you are still able to do
• Stay connected to your friends and family
• Continue to participate in activities that you enjoy and are meaningful to you
• Eat properly and exercise
• Take your medications as prescribed
• Use humour
• Live in the moment

Source: List reprinted with additions with permission from Australian Government: Department of Health and Ageing. (2006). Living with Dementia: A Booklet for People with Dementia. Canberra, Australia: Commonwealth of Australia.

Physical and mental exercise can have several benefits for people with dementia. In particular, it can help with reducing stress and depression. If you incorporate physical and mental activity in your life during the early stages of dementia, and make it part of your daily routine, it is more likely that you will continue these activities as the disease progresses. When choosing activities, make sure they are enjoyable and within your ability to avoid any potential stress or frustration. If you are going to start a physical exercise program, be sure to talk to your doctor first. You can try:

• Puzzles (e.g., crosswords, Sudoku, word find, etc.)
• Dancing
• Gardening
• Meditation
• Walking
• Reading
• Playing a musical instrument

Source: The information above was compiled with permission from the Australian Government: Department of Health and Ageing. (2006). Living with Dementia: A Booklet for People with Dementia. Canberra, Australia: Commonwealth of Australia.