GRIEF AND LOSS. Agenda ADJUSTING YOUR ATTITUDE TOWARDS GRIEF AND LOSS. Definition of Grief

Transcription

1 ADJUSTING YOUR ATTITUDE TOWARDS GRIEF AND LOSS Grief and Loss Agenda Alzheimer Society Saskatchewan April 2, :00 9:00 pm Nuelle Novik, MSW, PhD, RSW Anticipatory Grief and Ambiguous Loss Caregiver Coping End-of-Life Planning Dementia Death Loss Resources Definition of Grief GRIEF AND LOSS Keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret A cause or occasion of keen distress or sorrow 1

2 Definition of Loss The disappearance of something cherished The act or instance of losing; the harm or suffering caused by losing or being lost Loss is a common experience that can be encountered many times during a lifetime GRIEF AND LOSS FOR THE CAREGIVER Grief and Loss Loss comes in bits and pieces over many years Why me/us? How could this happen? Specific losses Who the person once was the previous person Functioning/activities Other Common Losses Intimacy, sex, privacy, independence, dreams, partnership, dignity, money, control, intellectual stimulation, friendship and family position Accompanying feelings of anger, sadness, guilt, depression, and abandonment It is common to feel isolated, invisible, and numb 2

3 Common Losses GRIEF AND LOSS FOR THE PERSON WITH DEMENTIA OR ALZHEIMER S DISEASE Loss of abilities to read, cook, enjoy hobbies and other activities Loss of independence the ability to drive Memories and relationships Death Loss For someone without dementia, recovery from a death usually involves: accepting the reality of the loss learning to live with it finding a new normal The pain of the loss can transform into beloved memories Dementia and Grieving People with dementia who are grieving are often agitated and restless they may sense that something is not right They may feel that something is missing They may confuse one loss with another A recent death may stimulate the memory of loss from childhood 3

4 How to Tell about a Death How to Tell about a Death Tell the news as soon as possible if you are too emotional, find someone else who can talk to them Choose a time when the person with dementia is well rested Don t give too many details; this may overwhelm them Answer questions as honestly as possible Use clear words like died instead of passed away or at peace now. Consider involving the person with dementia in funeral planning, assigning a simple task You can support them with physical touch, such as a hug or holding hands Plan for someone to be with the person during services who can also take them out if they become agitated Accepting the Death Short Term Accepting the Death Long Term Speak in the past tense about the person who has died Talk with them about the person who has died and express your sadness Accept how often they want to talk about the person who has died perhaps frequently, not much, or maybe not at all Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern or confusion Check their mood at the moment Look for patterns in the times they ask for the person who has died look for an unmet need Use distraction only when other ways of dealing with their grief are not working 4

5 What is Anticipatory Grief? ANTICIPATORY GRIEF AND AMBIGUOUS LOSS A common phenomenon among those who care for someone who is terminally ill Refers to the emotional pain of losing a loved one, felt in advance of the person's death Anticipatory grief refers to the process where we begin to mourn past, present and future losses SYMPTOMS CAREGIVER GUILT Denial Mood swings and forgetfulness Disorganized and confused behavior Anger Depression, anxiety and nervousness Feeling disconnected and alone Guilt Weight loss or gain; sleep problems Thinking that you could have done something differently pre/post diagnosis Feeling that you ve failed Regrets Still enjoying parts of life Negative thoughts Unrealistic expectations 5

6 What is Ambiguous Loss? Refers to the confusing feelings that family and caregivers have when they interact with their loved ones - particularly in the later stages of Alzheimer's Disease This can be very difficult because it seems as though the person is still physically alive but is no longer there mentally or socially Others do not acknowledge the loss PHASES OF COPING Phases of Coping When dealing with any life-threatening illness including Alzheimer s Disease there are four phases of coping: Pre-diagnosis The acute phase The chronic phase Recovery or death Pre-Diagnosis The period of time just before the diagnosis when there is a realization that there may be an illness Not usually a single moment but extends throughout the period when the person has a physical examination, including various tests, and ends when the person is told of the diagnosis (if a diagnosis is possible) 6

7 The Acute Phase Occurs at the time of the diagnosis, or the time of realization, when a person (and/or the family/caregivers) is forced to understand the diagnosis and make decisions about medical care The Chronic Phase The period of time between the diagnosis and the result of treatment The period of time when a patient and family/caregiver tries to cope with the demands of life while also undergoing treatment and coping with the side effects of treatment With Alzheimer's Disease, the period between a diagnosis and death may last many years Recovery or Death When people cope with the mental, social, physical, religious and financial effects of the disease The final (terminal) phase of a lifethreatening illness, like Alzheimer's Disease, occurs when death is likely The focus changes from curing the illness, or prolonging life, to providing comfort and relief from pain CAREGIVER COPING 7

8 CAREGIVER COPING COPING WITH GRIEF There really is no easy way through anticipatory grief and ambiguous loss These are very difficult but still very normal experiences for caregivers of those with Alzheimer s Disease and other types of Dementia These feelings can occur throughout the caregiving process often more than once Accept and acknowledge your feelings Talk to others Do things that you enjoy Let go of the guilt Find support Do what you can to establish balance and prevent depression Establish healthier ways to deal with stress The Different Kinds of Stress How to Prevent Depression Acute Stress A person suffering from acute stress may feel numb and unable to connect with others or to feel involved in the world Chronic Stress Chronic stress is the grinding stress that wears people away day after day, year after year. Chronic stress destroys bodies, minds and lives Reduce stress Cultivate supportive relationships Take care of yourself Get regular exercise Eat a healthy, mood-boosting diet Know when to seek out additional help Challenge negative thinking 8

9 Challenge Negative Thinking Types of Negative Thinking Think outside yourself Ask yourself if you d say what you re thinking about yourself to someone else Allow yourself to be less than perfect Socialize with positive people Keep a negative thought log All-or-nothing thinking Overgeneralization The mental filter Diminishing the positive Jumping to conclusions Emotional reasoning 'Shoulds and should-nots Labeling How to Keep Stress in Check Dealing with Stressful Situations Identify sources of stress in your life Look at how you currently cope with stress Avoid unnecessary stress Alter the situation if necessary If necessary, adapt to the stressor Accept the things you cannot change Make time for fun and relaxation Adopt a healthy lifestyle Change the situation: Avoid the stressor Alter the stressor Change your reaction: Adapt to the stressor Accept the stressor 9

10 Avoid Unnecessary Stress Learn how to say no Avoid people who stress you out Take control of your environment Avoid hot-button topics Pare down your to-do list Alter the Situation Express your feelings instead of bottling them up. Be willing to compromise. Be more assertive. Manage your time better. Adapt to the Stressor Adjust your Attitude Reframe problems Look at the big picture Adjust your standards Focus on the positive Don t try to control the uncontrollable Look for the upside Share your feelings Learn to forgive 10

11 End-of-Life Planning Dementia Death Loss Prepare early Seek financial and legal advice Focus on values Address family conflicts Communicate with family members You may grieve for the loss of that person, and for the relationship you once had. Some people find that they have grieved so much during the course of the illness that they have no strong feelings left when the person dies. Strong feelings may surface at a later time, sometimes quite unexpectedly. Reactions Death Loss After the Death Sadness Shock and pain Disbelief and an inability to accept the situation Guilt about something in the past Relief Anger and resentment Lack of purpose in life Try to avoid making any major decisions Accept that, even though you may generally be coping, there may be times when you will feel sad or upset Events such as birthdays or anniversaries may be difficult If necessary, talk to your doctor or to a professional support person 11

12 Saskatchewan Resources Alzheimer Society of Saskatchewan: Government of Saskatchewan HealthLine Call Greystone Bereavement Centre Call (306) Other Online Resources Alzheimer Society Canada good information and includes forums and chats: Alzheimer s Foundation for Caregiving in Canada: Canadian Virtual Hospice great resource lots of information for family caregivers and professionals: on/home.aspx Dementia Guide good information Canadian company there is a cost associated with joining: ElderCare Online good information based in the U.S. alot of advertising on the site: References Frank, J.B. (2008). Evidence for grief as the major barrier faced by Alzheimer Caregivers: A qualitative analysis. American Journal of Alzheimer s Disease & Other Dementias, 22(6), National Institute on Aging. (2012). End-of-life: Helping with comfort and care. Bethesda, MD: Office of Communications and Public Liaison Ott, C.H., Reynolds, S.A., Matovina Schlidt, A., & Noonan, P. (2006). A guide to supporting family caregivers through the alzheimer s disease trajectory: Grief and personal growth. Retrieved from Pathways. (2013). Helping people with dementia cope with loss and grief. Retrieved from Rando, T.A. (ed.). (1986). Loss and anticipatory grief. Lexington, MA: Lexington Books Silverberg, E. (2007). Introducing the 3-A Grief intervention model for caregivers: Acknowledge, assess and assist. Omega, 54(3), Walsh, K. (2006). Grief and loss: Theories and skills for the helping professions. Upper Saddle River, NJ: Pearson Education Inc. 12