{"id":32071,"date":"2023-07-26T16:18:47","date_gmt":"2023-07-26T15:18:47","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=32071"},"modified":"2024-07-04T12:10:24","modified_gmt":"2024-07-04T11:10:24","slug":"a-day-in-the-life-of-a-parent-carer","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/a-day-in-the-life-of-a-parent-carer\/","title":{"rendered":"A day in the life of a parent carer for a child with complex disabilities"},"content":{"rendered":"\n<p class=\"is-style-intro\">Lowri, 27, lives in Hampshire with her partner Jack and their daughter Mia. Mia is three, and has a neurological condition called Rett syndrome. Her condition means that she is non-verbal, can\u2019t move by herself and has to be fed using special equipment called a PEG tube.\u00a0<\/p>\n\n\n\n<p class=\"is-style-intro\">Lowri is Mia\u2019s full-time carer. As we launch our <strong><a href=\"https:\/\/www.sense.org.uk\/get-involved\/campaign\/give-carers-a-break\/\">Give Carers a Break campaign<\/a><\/strong>, she tells us exactly what this is like \u2013 and why it\u2019s so important that carers like her get access to respite.\u00a0<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Lowri-James_-Jack-Kelly_-Mia-Kelly-1024x768.jpg\" alt=\"Lowri and Jack and their daughter Mia smile for the camera while sitting at a table together.\" class=\"wp-image-20906\"\/ style=\"object-position: 55.42% 48.95%;\"><\/figure>\n\n\n\n<p>Caring for someone with complex disabilities is hard work. It\u2019s very demanding non-stop, and it takes a toll physically, mentally and emotionally.&nbsp;<\/p>\n\n\n\n<p>When Mia became nil-by-mouth, which meant she had to be tube-fed, I quit working so I could become her full-time carer.&nbsp;<\/p>\n\n\n\n<p>I love caring for Mia. She is non-verbal, but she does show off a lot of love. She really speaks through her eyes, and we do have a really special bond. We spend a lot of time cuddling.<\/p>\n\n\n\n<p>Even though I love taking care of her, it doesn\u2019t change the fact that it can be exhausting.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Give Carers a Break - Lowri&#039;s story\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/p55TDjxWsVg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>I care for Mia 24 hours a day<\/strong><\/h2>\n\n\n\n<p>From the moment she wakes up to the moment she goes to bed, I am caring for Mia.<\/p>\n\n\n\n<p>Because she can only eat through her tube, I feed her every meal.&nbsp;<\/p>\n\n\n\n<p>I also dress her, and have to carry her around everywhere, because she can\u2019t move by herself.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-pullquote alignleft is-style-secondary-tint-10\"><blockquote><p>&#8220;I would just love a few hours or days where I could relax, and not have to be so alert and constantly thinking about someone\u2019s needs. It would really help me to unwind.&#8221;<\/p><\/blockquote><\/figure>\n\n\n\n<p>I also have to keep on top of Mia\u2019s medication. We have several specialist devices at home that I have to keep charged to help take care of Mia.&nbsp;<\/p>\n\n\n\n<p>She is incontinent and suffers with severe reflux, resulting in severe constant sickness. <\/p>\n\n\n\n<p>That means I\u2019m also washing clothing constantly throughout the day, and washing her bedding every single day.<\/p>\n\n\n\n<p>Even simple tasks can take a lot longer when you\u2019re caring for a child with complex disabilities.<\/p>\n\n\n\n<p>For example, if I need to pop into the shop for milk, it might take 15 minutes longer than it would take another person.&nbsp;<\/p>\n\n\n\n<p>That\u2019s because I\u2019ve got to get Mia\u2019s wheelchair out of the car, put it together, lift her into it, push her into the shop, and then get Mia and the folded chair back into the car.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Even at night and when Mia is at school, I have caring responsibilities<\/strong><\/h2>\n\n\n\n<p>My caring responsibilities don\u2019t end when Mia goes to bed. She often has insomnia.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image alignright size-large is-resized\"><img decoding=\"async\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Mia-Kelly-_daughter-of-Lowri_-779x1024.jpg\" alt=\"Mia, a young girl with blonde hair, smiling in her wheelchair. \" class=\"wp-image-20908\" width=\"415\" height=\"545\" srcset=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Mia-Kelly-_daughter-of-Lowri_-779x1024.jpg 779w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Mia-Kelly-_daughter-of-Lowri_-600x789.jpg 600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Mia-Kelly-_daughter-of-Lowri_-768x1010.jpg 768w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Mia-Kelly-_daughter-of-Lowri_-500x657.jpg 500w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2023\/02\/Mia-Kelly-_daughter-of-Lowri_.jpg 1080w\" sizes=\"(max-width: 415px) 100vw, 415px\" \/><\/figure>\n\n\n\n<p>So I\u2019ve always got to be alert at night, listening out for her. I do sleep, but it\u2019s a lot of broken sleep.<\/p>\n\n\n\n<p>I\u2019m so used to the broken sleep that even when Mia sleeps through the night, I struggle to get a restful and full night\u2019s sleep myself.<\/p>\n\n\n\n<p>Mia goes to school for two days a week. While she\u2019s there, my time is crammed full as I catch up on life admin.<\/p>\n\n\n\n<p>It\u2019s my time to do bits that I can\u2019t do easily when I have Mia with me. That means doing the food shop, popping to the chemist, or stocking up on her feed.<\/p>\n\n\n\n<p>The time goes so quickly, and before I know it I\u2019ve got to pick her up again.&nbsp;<\/p>\n\n\n\n<p>There\u2019s never been a time where I\u2019ve just dropped Mia off at school and been able to relax by myself for the day.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Respite would give me the opportunity to have a proper rest<\/strong><\/h2>\n\n\n\n<p>We\u2019ve been offered a little <a href=\"https:\/\/www.sense.org.uk\/support-for-carers\/respite-care-short-breaks-for-carers\/\">respite care<\/a> by our local authority.\u00a0<\/p>\n\n\n\n<p>It\u2019s one session of a few hours per month, at a centre a couple of hours\u2019 drive away from us.&nbsp;<\/p>\n\n\n\n<p>By the time we\u2019ve factored in the four-hour round trip to take Mia there and bring her back, it\u2019s not really a break at all.&nbsp;<\/p>\n\n\n\n<p>What would be more helpful would be an overnight break. If Mia could have a couple of nights away, with someone that can care for her properly, I could spend those nights just having full nights\u2019 sleep.&nbsp;<\/p>\n\n\n\n<p>I would just love a few hours or days where I could relax, and not have to be so alert and constantly thinking about someone\u2019s needs. It would really help me to unwind.<\/p>\n\n\n\n<p>I think every person would need support if they were caring for someone, especially 24\/7. You do need a break. You do need some sort of sanity.<\/p>\n\n\n\n<p>And the only way you get sanity is by having support and respite.<\/p>\n\n\n\n<p>While waiting for support or respite, I\u2019ve just got to get on with it, and make Mia the happiest I can, and give her the best care possible.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box  ctaBox    is-style-textured-secondary-tint-10\">\n    <div class=\"ctaBox__row\">\n      <div class=\"ctaBox__content\">\n        <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\"><strong>Everybody deserves a break<\/strong><\/h2>\n\n\n\n<p>Being able to take a break from caring is essential, but many people struggle to access the respite they\u2019re entitled to.&nbsp;<\/p>\n\n\n\n<p>Will you add your name and help give carers the break they need?<\/p>\n\n<\/div>\n      <\/div>\n\n      <div class=\"ctaBox__cta\">\n        <a href=\"https:\/\/sense.org.uk\/givecarersabreak\" class=\"button  button--primary\">Sign now<\/a>\n      <\/div>\n    <\/div>\n\n  <\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Lowri is a full-time carer to Mia, three, who has Rett syndrome. She tells us exactly what this is like \u2013 and why it\u2019s so important that carers like her get access to respite.\u00a0<\/p>\n","protected":false},"author":14,"featured_media":20906,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":true,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[488],"class_list":["post-32071","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-lowri-james"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/32071","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=32071"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/32071\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/20906"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=32071"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=32071"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=32071"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=32071"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}