{"id":157,"date":"2017-12-08T14:07:00","date_gmt":"2017-12-08T19:07:00","guid":{"rendered":"http:\/\/pbdev.ca\/ocp\/?page_id=157"},"modified":"2020-12-14T12:27:53","modified_gmt":"2020-12-14T17:27:53","slug":"topic-5-what-do-people-with-a-life-limiting-illness-want","status":"publish","type":"page","link":"https:\/\/caregiversupport.hpco.ca\/ocp\/topic-5-what-do-people-with-a-life-limiting-illness-want\/","title":{"rendered":"Topic 5: What do People with a Life-limiting Illness Want?"},"content":{"rendered":"<div id=\"pl-157\"  class=\"panel-layout\" >\n<div id=\"pg-157-0\"  class=\"panel-grid panel-no-style\"  data-style=\"{&quot;background_display&quot;:&quot;tile&quot;,&quot;cell_alignment&quot;:&quot;flex-start&quot;}\"  data-ratio=\"1\"  data-ratio-direction=\"right\" >\n<div id=\"pgc-157-0-0\"  class=\"panel-grid-cell\"  data-weight=\"1\" >\n<div id=\"panel-157-0-0-0\" class=\"so-panel widget widget_sow-editor panel-first-child\" data-index=\"0\" data-style=\"{&quot;background_display&quot;:&quot;tile&quot;}\" >\n<div class=\"so-widget-sow-editor so-widget-sow-editor-base\">\n<div class=\"siteorigin-widget-tinymce textwidget\">\n<div class=\"ocp-green-heading\">Topic: 5<\/div>\n<h2 style=\"text-align: left;\"><span style=\"color: #5ca14d;\">What do People with a Life-limiting Illness Want?<\/span><\/h2>\n<\/div>\n<\/div>\n<\/div>\n<div id=\"panel-157-0-0-1\" class=\"so-panel widget widget_sow-editor\" data-index=\"1\" data-style=\"{&quot;background_image_attachment&quot;:false,&quot;background_display&quot;:&quot;tile&quot;}\" >\n<div class=\"so-widget-sow-editor so-widget-sow-editor-base\">\n<div class=\"siteorigin-widget-tinymce textwidget\">\n<p class=\"p1\"><span class=\"s1\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-140 size-full alignleft\" src=\"http:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2017\/12\/Adobe_PDF_file_icon_32x32.png\" alt=\"PDF\" width=\"32\" height=\"32\" \/>\u00a0<a href=\"http:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2020\/05\/5-What-do-People-with-a-Life-limiting-Illness-Want.pdf\" target=\"_blank\" rel=\"noopener\">Download a PDF version of this topic<\/a>\u00a0<\/span><\/p>\n<p class=\"p1\"><span class=\"s1\">Use the player to hear an audio version of this topic&#8230;<\/span><\/p>\n<audio class=\"wp-audio-shortcode\" id=\"audio-157-1\" preload=\"none\" style=\"width: 100%;\" controls=\"controls\"><source type=\"audio\/mpeg\" src=\"http:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/01\/Topic-5.mp3?_=1\" \/><a href=\"http:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/01\/Topic-5.mp3\">http:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/01\/Topic-5.mp3<\/a><\/audio>\n<\/div>\n<\/div>\n<\/div>\n<div id=\"panel-157-0-0-2\" class=\"so-panel widget widget_sow-editor panel-last-child\" data-index=\"2\" data-style=\"{&quot;background_image_attachment&quot;:false,&quot;background_display&quot;:&quot;tile&quot;}\" >\n<div class=\"so-widget-sow-editor so-widget-sow-editor-base\">\n<div class=\"siteorigin-widget-tinymce textwidget\">\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-1274\" src=\"http:\/\/pbdev.ca\/ocp\/wp-content\/uploads\/2018\/03\/t-5.jpg\" alt=\"\" width=\"852\" height=\"564\" srcset=\"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/t-5.jpg 852w, https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/t-5-300x199.jpg 300w, https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/t-5-768x508.jpg 768w\" sizes=\"auto, (max-width: 852px) 100vw, 852px\" \/><\/p>\n<div class=\"ocp-blue-heading\">What You Need to Know<\/div>\n<p>People who are sick and weak and who are struggling to help themselves, have the same priorities as you do. They want for themselves what you want for yourself:<\/p>\n<ul>\n<li>To maintain a sense of dignity and privacy, as much as possible;<\/li>\n<li>To maintain a sense of control, as much as possible;<\/li>\n<li>To be treated with respect, sensitivity and an awareness of their feelings; and<\/li>\n<li>To avoid being a burden to their family and friends, as much as possible.<\/li>\n<\/ul>\n<h4><span style=\"color: #5ca14d;\">The essence of your role as a caregiver is to do the very best that you can to honour these priorities.<\/span><\/h4>\n<p>There is no magic formula for caregiving; each caregiver will do the best that they can. But, by giving attention to these four priorities and by adopting a problem-solving approach, you too can be an effective caregiver.<\/p>\n<h4><span style=\"color: #5ca14d;\">How to Use a Problem-Solving Approach<\/span><\/h4>\n<p>Adopting a problem-solving mind-set and approach will help to decrease the feelings that you may have of being overwhelmed. It can feel like putting the pieces of a puzzle together; but, if you follow these key steps, you can work out most problems that you are faced with as a caregiver.<\/p>\n<p><strong>Step 1: Gather information <\/strong>by observing any changes in the person\u2019s needs or abilities and any reasons that you can think of for those changes.<\/p>\n<p><strong>Step 2: Gather resources <\/strong>if possible that address the issue that you are facing.<\/p>\n<p><strong>Step 3: Make a plan<\/strong> of action based on what is realistic and manageable.<\/p>\n<p><strong>Step 4: Choose what action<\/strong> you will take, share it with the person; and then act!<\/p>\n<p><strong>Step 5: Evaluate the changes, results<\/strong> <strong>and outcomes<\/strong> with the person that you are caring for.<\/p>\n<h4><span style=\"color: #5ca14d;\">Create a Plan to Live Well Now<\/span><\/h4>\n<p>You could suggest to the person that you are caring for that you work together on a legacy gift for friends and families. A legacy gift can take many forms. It can be a final trip you all take together, a handwritten letter, some hand written notes, a journal, a narrated or captioned photo album, a video, an audio recording. Take some time and help the person that you are caring for to create a legacy gift for their loved ones. It can be satisfying to make and wonderful to share.<\/p>\n<div class=\"ocp-green-element\">\n<div class=\"ocp-green-element-side\"><\/div>\n<div class=\"ocp-green-element-content\">\u201cCarve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.\u201d (Shannon l. Alder)<\/div>\n<\/div>\n<p><strong>\u00a0<\/strong><strong>What to write or talk about?<\/strong><\/p>\n<ul>\n<li>Relationships<\/li>\n<li>Family history<\/li>\n<li>Highlights of your life<\/li>\n<li>Trips you took<\/li>\n<li>Favourite music, sports teams, heroes<\/li>\n<li>Your favourite saying<\/li>\n<li>Hopes and dreams for your family and friends<\/li>\n<li>Favorite books, poems, songs<\/li>\n<li>Favorite places in the world<\/li>\n<\/ul>\n<div class=\"ocp-green-element\">\n<div class=\"ocp-green-element-side\"><\/div>\n<div class=\"ocp-green-element-content\"><strong>Your story is the greatest legacy that you will leave to your friends. It\u2019s the longest-lasting legacy you will leave to your heirs.\u201d <\/strong><strong>(Steve Saint)<\/strong><\/div>\n<\/div>\n<h4><span style=\"color: #5ca14d;\">Be a Friend\u00a0<\/span><\/h4>\n<p>A young woman named Courtney Strain died of brain cancer in June 2010 at the age of 25. In the months before she died, she said that when she was diagnosed with brain cancer she sometimes felt like an outcast. People didn&#8217;t know what to say to her, so they said nothing at all. So, with a friend\u2019s help she wrote a simple guide called &#8220;What You Can Do When a Friend (Like Me) Faces the End of Life.&#8221; <em>\u00a0<\/em><em>Here are some of the things she wanted people to know:<\/em><\/p>\n<ul>\n<li><strong>Hallmark doesn&#8217;t fix it all.<\/strong>&#8230; Write a letter or send an email. &#8230; [Talk to me when] I&#8217;m strong enough to sit and laugh or cry with you.<\/li>\n<li><strong>Don&#8217;t pretend that everything is going to be OK.<\/strong><\/li>\n<li><strong>Don&#8217;t abandon me at my most vulnerable time.\u00a0<\/strong>&#8230; Sit and pray with me. Don&#8217;t just pray for me.<\/li>\n<li><strong>Don&#8217;t treat me like a child \u2014 even a well-loved child.\u00a0<\/strong>&#8230; Include me in decisions that affect our family or social group.<\/li>\n<li><strong>Instead of asking, &#8220;What can I do for you?&#8221; <\/strong><strong>Offer some concrete suggestions<\/strong> \u2014 like bringing a meal or treat, or running errands.<\/li>\n<li><strong>Respect my decisions about my health care \u2014<\/strong>my doctors, my medications and my treatments \u2014 and about my end-of-life plans.<\/li>\n<li><strong>Just because I&#8217;m dying doesn&#8217;t mean I&#8217;m any less capable of being your friend.\u00a0<\/strong>Dying isn&#8217;t my whole identity.<\/li>\n<\/ul>\n<p><em>\u00a0<\/em><strong><em>(&#8220;What You Can Do When A Friend (Like Me) Faces the End of Life,&#8221;\u00a0<\/em><a href=\"http:\/\/www.bjchospice.org\/?id=30995&amp;sid=17\">BJC Palliative Home Care and Hospice<\/a>)<\/strong><\/p>\n<p>&nbsp;<\/p>\n<h5><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-1133\" src=\"http:\/\/pbdev.ca\/ocp\/wp-content\/uploads\/2018\/03\/walk-shoes-1.png\" alt=\"\" width=\"852\" height=\"53\" srcset=\"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/walk-shoes-1.png 852w, https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/walk-shoes-1-300x19.png 300w, https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/walk-shoes-1-768x48.png 768w\" sizes=\"auto, (max-width: 852px) 100vw, 852px\" \/><\/h5>\n<h5><strong>1. Think again about the four priorities of people who are ill: <\/strong><\/h5>\n<p>People who are sick and weak and who are struggling to help themselves want what you want:<\/p>\n<ul>\n<li>To maintain a sense of dignity and privacy, as much as possible;<\/li>\n<li>To maintain a sense of control, as much as possible;<\/li>\n<li>To be treated with respect, sensitivity and an awareness of their feelings; and<\/li>\n<li>To avoid being a burden to their family and friends, as much as possible.<\/li>\n<\/ul>\n<h5>2. Read each scenario below then problem solve the situation by honouring these priorities.<\/h5>\n<p><span style=\"color: #1b4c9f;\"><strong>Scenario #1<\/strong> <\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><span style=\"color: #000000;\">John needs to use the toilet or commode. There is a minimal risk of him being injured if left unattended. So what should you do to allow John to maintain a sense of dignity and privacy?<\/span><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><strong>Answer? <\/strong><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\">Leave the room. If there is a minimal risk of John being injured if left unattended and if you are dedicated to helping John maintain a sense of privacy and dignity then the answer is clear. Leave him alone when he is using the toilet or commode. If you are worried, close the door and stand right behind it. Provide John with toilet paper prior to leaving him.<\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><strong>Scenario #2 <\/strong><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><span style=\"color: #000000;\">Diane isn\u2019t hungry at lunch time. She simply doesn\u2019t want to eat. What should you do to help Diane to maintain a sense of independence and control?<\/span><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><strong>Answer? <\/strong><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\">Ask her what she might like for lunch when she is hungry. Ask her to tell you when she is hungry and then prepare what you have talked about together. Give the person choices in the food provided, and offer reassurance. By doing so, you will help her maintain a sense of independence and control. Remember: very ill or dying people don\u2019t feel hunger like well people do. Do not force food. She may enjoy only one spoonful of her favourite treat. Do not make big plates of food. Smaller, more frequent snacks are often better tolerated and accepted.<\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><strong>Scenario #3 <\/strong><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><span style=\"color: #000000;\">Natsu needs to have access to some special equipment that represent \u201csick rooms\u201d including a commode, wound care dressings and adult incontinence garments or briefs. What can you do to be sensitive and respectful of Natsu\u2019s feelings?<\/span><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\"><strong>Answer? <\/strong><\/span><\/p>\n<p><span style=\"color: #1b4c9f;\">Remove these items when they aren\u2019t in use. Store them in a nearby closet or drawers. If you are ill, you don\u2019t need to be constantly reminded of your medical needs. Being sensitive to a person\u2019s feelings often means treating them as you would like to be treated. Cover a commode with a throw rug when not in use if you have nowhere to store it. Do not refer to adult incontinence garments as \u201cdiapers\u201d as such a term can be very demeaning.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-1207\" src=\"http:\/\/pbdev.ca\/ocp\/wp-content\/uploads\/2018\/03\/add-resources.png\" alt=\"\" width=\"400\" height=\"63\" srcset=\"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/add-resources.png 400w, https:\/\/caregiversupport.hpco.ca\/ocp\/wp-content\/uploads\/2018\/03\/add-resources-300x47.png 300w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/> <strong>Print these <em>Tips for Caregivers<\/em> and keep them handy.<\/strong><\/p>\n<h4><span style=\"color: #5ca14d;\">Tips for Caregivers<\/span><\/h4>\n<ol>\n<li><strong>Make time to care for yourself. (<a href=\"http:\/\/pbdev.ca\/ocp\/topic-3-care-for-the-caregiver-and-handling-your-emotions\/\">see Topic #3<\/a>) <\/strong>You will be of no use to the person you are caring for if you don\u2019t take the time to care for yourself.<\/li>\n<li><strong>Listen to the person<\/strong> and empathize with their concerns. Avoid saying \u201cI know how you feel\u201d or \u201cTry to cheer up\u201d or \u201cPull yourself together.\u201d Rather, use empathetic statements such as \u201cThis is obviously a horrible time for you.\u201d<\/li>\n<li><strong>Take your cues from your loved one<\/strong> but acknowledge how you are feeling too. Keeping a daily journal may help.<\/li>\n<li><strong>Answer<\/strong> <strong>the person\u2019s questions<\/strong> as best you can. If you don\u2019t know, say so. Try to find out what you don\u2019t know. Always be truthful; everyone, whether sick or well, should be treated with honesty.<\/li>\n<li><strong>Reinforce the person\u2019s dignity at all times. <\/strong>Respect the person\u2019s privacy and allow as much control as you can about decisions over care and activities.<\/li>\n<li><strong>Support the person\u2019s sense of independence and control. <\/strong>Help the person do what they can for themselves and give them choices whenever possible. Help maintain their normal routines and rituals.<\/li>\n<li><strong>Respect the person\u2019s right to choose.<\/strong> Go easy on giving advice and be open to it being ignored.<\/li>\n<li><strong>Support the person\u2019s sense of hope. <\/strong>Hope can change over time. If a person is diagnosed with a life-limiting illness what they hope for when first diagnosed may change over time. That is okay. Be the person that supports a person\u2019s sense of hope. Ask the person, \u201cWhat are you hoping for today?\u201d It could be as simple as having no pain, sitting outside, seeing a friend, etc. Once you know what they hope for, you can perhaps help it happen.<\/li>\n<li><strong>Maintain family relationships<\/strong>. Create a place where family members feel welcome. Encourage people to visit and to share some of their time. Include your loved one in family activities whenever possible.<\/li>\n<li><strong>Reminisce<\/strong> about your life together, the good and not so good.<\/li>\n<li><strong>Spend time together<\/strong> talking, listening to music, watching television, playing cards or games. Share your laughter and your tears. Work on that legacy gift and that bucket list.<\/li>\n<li><strong>Resolve any unfinished business<\/strong> as best you can even if this means involving a third person.<\/li>\n<li><strong>Help identify unmet spiritual or psychosocial needs.<\/strong> If a person you are caring for feels anxiety or fear, ask if they would like to talk to a priest, a clergyman, a spiritual leader, or counsellor. Help your loved one put affairs in order.<\/li>\n<li><strong>Build in time for the person to rest <\/strong>and let visitors know when that is.<\/li>\n<\/ol>\n<p><em>(Adapted from Canadian Hospice Palliative Care resources)<\/em><\/p>\n<p><strong>Sex and Sexuality in Advanced Illness<\/strong><\/p>\n<p><iframe loading=\"lazy\" title=\"Sex and Sexuality in Advanced Illness\" width=\"720\" height=\"405\" src=\"https:\/\/www.youtube.com\/embed\/_gpqEgnelGo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Topic: 5 What do People with a Life-limiting Illness Want? \u00a0Download a PDF version of this topic\u00a0 Use the player to hear an audio version of this topic&#8230; What You Need to Know People who are sick and weak and who are struggling to help themselves, have the same priorities as you do. They want [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-157","page","type-page","status-publish","hentry","post"],"_links":{"self":[{"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/pages\/157","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/comments?post=157"}],"version-history":[{"count":54,"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/pages\/157\/revisions"}],"predecessor-version":[{"id":2665,"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/pages\/157\/revisions\/2665"}],"wp:attachment":[{"href":"https:\/\/caregiversupport.hpco.ca\/ocp\/wp-json\/wp\/v2\/media?parent=157"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}