{"id":451,"date":"2010-12-01T12:07:27","date_gmt":"2010-12-01T17:07:27","guid":{"rendered":"http:\/\/parkinson.netfirms.com\/epp_e\/?p=451"},"modified":"2010-12-01T12:07:27","modified_gmt":"2010-12-01T17:07:27","slug":"caring-for-a-loved-one-as-parkinsons-advances","status":"publish","type":"post","link":"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/","title":{"rendered":"Caring for a loved one as Parkinson\u2019s advances"},"content":{"rendered":"
\"Frank<\/a>

Frank and Carmel Boosamra <\/p><\/div>\n

First Person \u2013 Carmel Boosamra<\/em><\/p>\n

Carmel Boosamra thought she had read everything she needed to know to assist her husband Frank on his journey with Parkinson\u2019s but she didn\u2019t know the half of it. \u201cI hadn\u2019t even scratched the surface,\u201d she says, recalling some of the challenges.<\/p>\n

Economic impact.<\/strong> Frank had to sell his business. He had been a pioneer in supplying and installing solar control window film in the Ottawa area. \u201cHaving him lose his source of income was pretty traumatic for both of us.\u201d<\/p>\n

Loss of driver\u2019s licence.<\/strong> When the doctor notified the Ministry of Transportation that Frank should no longer drive because of muscle rigidity and some cognitive decline, \u201cthat had a bigger impact on Frank psychologically than anything else. Whenever anyone asked him what was the worst thing about dealing with Parkinson\u2019s, he would say, \u2018losing my driver\u2019s licence\u2019.\u201d<\/p>\n

Co-existing health problems. <\/strong>Frank had heart bypass surgery 10 years before he was diagnosed with Parkinson\u2019s in 1992, at age 52. He also had insulin-dependent diabetes and, in 1999, required surgery to amputate his foot. \u201cThe anaesthetic played havoc with his Parkinson\u2019s.\u201d<\/p>\n

Medication management in the hospital. <\/strong>\u201cThere was a big problem trying to get the meds on time every time Frank was hospitalized.\u201d Carmel recalls being stunned when a medical resident asked her how long her husband had been having psychotic episodes. The incident spurred her determination to educate and advocate on behalf of people with Parkinson\u2019s. \u201cDuring all the hospital stays, getting medication on time was a constant battle with the medical staff.\u201d<\/p>\n

Medication management at home<\/strong>. \u201cAs the Parkinson\u2019s medications were no longer effective, the neurologist kept trying different drugs to see what worked best but Frank would get severe hallucinations which I found very frightening. The neurologist was a great asset to me because he took the time to help me understand what was going on. At one point, Frank was on three different types of drugs but eventually it came down to one.\u201d<\/p>\n

Safety concerns.<\/strong> \u201cFrank was home alone while I was at work. He was falling all the time and he was hallucinating. I never knew what to expect when I came through the door at the end of my day. One time I came home and found everything removed from the china cabinet and packed away in boxes. Frank was cooking in the kitchen and something was burning in the oven but he didn\u2019t realize it. He was in his own little world and he was paranoid that someone was coming to take everything away. It was then that I decided this isn\u2019t good. We need to find a solution. Luckily, we had been receiving home care for three years, so they were ready to place Frank into a care facility as soon as I called them. \u201d<\/p>\n

Power of attorney.<\/strong> \u201cPower of attorney was something that we both discussed and planned. We arranged it while Frank was fully capable of making that decision, which made the whole process easier for me emotionally. We set up a power of attorney for finances\/property and a power of attorney for personal\/healthcare decisions. I highly recommend these legal avenues. Some people may feel it means giving up their legal rights or voice but it doesn\u2019t have to be, as it is not used all the time but is available when needed.\u201d<\/p>\n

Planning ahead for future care. <\/strong>\u201cFrom the start, Frank was realistic and practical when it came to his care and future needs. We had visited care facilities and decided together which one we wanted him to go to. When it was time to move, we didn\u2019t get his choice at first, but we eventually got the one we wanted.\u201d<\/p>\n

Dealing with symptoms of advanced Parkinson\u2019s. <\/strong>\u201cThe saddest day for me was the day we went to see his neurologist and the neurologist told me that Frank had Lewy body dementia, which can happen in late-stage Parkinson\u2019s. That was in fall 2007. From that point on, Frank just faded completely. I could see that he wanted to say something to me but he couldn\u2019t get the words out; his cognitive ability wouldn\u2019t allow him to form the words. As a partner and as a caregiver, it was tough knowing he had lost that ability to communicate verbally. After a time, I got used to it. He communicated to me through his eyes. I could tell what he wanted to say just by the look in his eyes.\u201d<\/p>\n

Scarcity of information. <\/strong>\u201cI wish I had known more about Lewy body disease. It was there long before it was diagnosed but I had no information to help me understand it. There was no resource available to tell me about advanced Parkinson\u2019s, such as what to look for when someone starts having swallowing problems. I watched these things happen gradually to Frank but I think I would have accepted it better if had some knowledge about it.\u201d<\/p>\n

The toughest issue.<\/strong> \u201cThe loss of the person. In the last year of Frank\u2019s life, I went to see him every day and held his hand. Our relationship was now simply holding hands. It was very sad. It\u2019s human instinct to just persevere when you\u2019re faced with circumstances like that with the person you love but I don\u2019t know how I got through that.\u201d Frank Boosamra died in July 2008.<\/p>\n

Asked if there is anything she would do differently, Carmel says, \u201cI did everything that was humanly possible, as a caregiver advocating for Frank, making sure we got home care when they wanted to reduce the hours, advocating with the doctors and nurses in the hospital to ensure he got his medication on time. My advice to anybody who is caring for someone with late-stage Parkinson\u2019s is to keep advocating for them and treat each moment you share with your loved one as a precious time.\u201d<\/p>\n

Carmel currently serves on Parkinson Society Ottawa\u2019s board of directors and is a member of the Ontario Advocacy Committee. She says, \u201cBecause I experienced and saw the misunderstanding and lack of knowledge about Parkinson\u2019s that\u2019s out there in the general public and in our government policymakers, I feel it\u2019s a public service, on my part, to become involved and do something about that.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

First Person \u2013 Carmel Boosamra Carmel Boosamra thought she had read everything she needed to know to assist her husband … En savoir plus<\/a><\/p>\n","protected":false},"author":37,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[237],"tags":[],"yoast_head":"\nCaring for a loved one as Parkinson\u2019s advances - Parkinson Canada<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Caring for a loved one as Parkinson\u2019s advances - Parkinson Canada\" \/>\n<meta property=\"og:description\" content=\"First Person \u2013 Carmel Boosamra Carmel Boosamra thought she had read everything she needed to know to assist her husband ... En savoir plus\" \/>\n<meta property=\"og:url\" content=\"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/\" \/>\n<meta property=\"og:site_name\" content=\"Parkinson Canada\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/parkinsoncanada\/\" \/>\n<meta property=\"article:published_time\" content=\"2010-12-01T17:07:27+00:00\" \/>\n<meta property=\"og:image\" content=\"http:\/\/parkinsonpost.files.wordpress.com\/2010\/12\/frank-and-carmel-boosamra.jpg\" \/>\n<meta name=\"author\" content=\"communications@parkinson.ca\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@ParkinsonCanada\" \/>\n<meta name=\"twitter:site\" content=\"@ParkinsonCanada\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"communications@parkinson.ca\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/\",\"url\":\"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/\",\"name\":\"Caring for a loved one as Parkinson\u2019s advances - Parkinson Canada\",\"isPartOf\":{\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/#website\"},\"datePublished\":\"2010-12-01T17:07:27+00:00\",\"dateModified\":\"2010-12-01T17:07:27+00:00\",\"author\":{\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/#\/schema\/person\/03860c23b3c90c09c6aade3ba61072d9\"},\"breadcrumb\":{\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/#breadcrumb\"},\"inLanguage\":\"fr-FR\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/archiveparkinson.thedev.ca\/fr\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Caring for a loved one as Parkinson\u2019s advances\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/#website\",\"url\":\"https:\/\/archiveparkinson.thedev.ca\/\",\"name\":\"Parkinson Canada\",\"description\":\"Empowering the Parkinson's community across Canada\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/archiveparkinson.thedev.ca\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"fr-FR\"},{\"@type\":\"Person\",\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/#\/schema\/person\/03860c23b3c90c09c6aade3ba61072d9\",\"name\":\"communications@parkinson.ca\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"fr-FR\",\"@id\":\"https:\/\/archiveparkinson.thedev.ca\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/931eabe92f8bed16e93390bff0d660ab?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/931eabe92f8bed16e93390bff0d660ab?s=96&d=mm&r=g\",\"caption\":\"communications@parkinson.ca\"}}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Caring for a loved one as Parkinson\u2019s advances - Parkinson Canada","robots":{"index":"noindex","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"og_locale":"fr_FR","og_type":"article","og_title":"Caring for a loved one as Parkinson\u2019s advances - Parkinson Canada","og_description":"First Person \u2013 Carmel Boosamra Carmel Boosamra thought she had read everything she needed to know to assist her husband ... En savoir plus","og_url":"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/","og_site_name":"Parkinson Canada","article_publisher":"https:\/\/www.facebook.com\/parkinsoncanada\/","article_published_time":"2010-12-01T17:07:27+00:00","og_image":[{"url":"http:\/\/parkinsonpost.files.wordpress.com\/2010\/12\/frank-and-carmel-boosamra.jpg"}],"author":"communications@parkinson.ca","twitter_card":"summary_large_image","twitter_creator":"@ParkinsonCanada","twitter_site":"@ParkinsonCanada","twitter_misc":{"\u00c9crit par":"communications@parkinson.ca","Dur\u00e9e de lecture estim\u00e9e":"5 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/","url":"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/","name":"Caring for a loved one as Parkinson\u2019s advances - Parkinson Canada","isPartOf":{"@id":"https:\/\/archiveparkinson.thedev.ca\/#website"},"datePublished":"2010-12-01T17:07:27+00:00","dateModified":"2010-12-01T17:07:27+00:00","author":{"@id":"https:\/\/archiveparkinson.thedev.ca\/#\/schema\/person\/03860c23b3c90c09c6aade3ba61072d9"},"breadcrumb":{"@id":"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/#breadcrumb"},"inLanguage":"fr-FR","potentialAction":[{"@type":"ReadAction","target":["https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/archiveparkinson.thedev.ca\/fr\/caring-for-a-loved-one-as-parkinsons-advances\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/archiveparkinson.thedev.ca\/fr\/"},{"@type":"ListItem","position":2,"name":"Caring for a loved one as Parkinson\u2019s advances"}]},{"@type":"WebSite","@id":"https:\/\/archiveparkinson.thedev.ca\/#website","url":"https:\/\/archiveparkinson.thedev.ca\/","name":"Parkinson Canada","description":"Empowering the Parkinson's community across Canada","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/archiveparkinson.thedev.ca\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"fr-FR"},{"@type":"Person","@id":"https:\/\/archiveparkinson.thedev.ca\/#\/schema\/person\/03860c23b3c90c09c6aade3ba61072d9","name":"communications@parkinson.ca","image":{"@type":"ImageObject","inLanguage":"fr-FR","@id":"https:\/\/archiveparkinson.thedev.ca\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/931eabe92f8bed16e93390bff0d660ab?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/931eabe92f8bed16e93390bff0d660ab?s=96&d=mm&r=g","caption":"communications@parkinson.ca"}}]}},"_links":{"self":[{"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/posts\/451"}],"collection":[{"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/users\/37"}],"replies":[{"embeddable":true,"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/comments?post=451"}],"version-history":[{"count":0,"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/posts\/451\/revisions"}],"wp:attachment":[{"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/media?parent=451"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/categories?post=451"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/archiveparkinson.thedev.ca\/fr\/wp-json\/wp\/v2\/tags?post=451"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}