I hope you are well. My sincerest apologies if research projects are not welcome here, but I would like to tell you about a study we are conducting at the University of Newcastle:
You are invited to participate in the research project identified above, which is being conducted by a team of researchers led by Professor Billie Bonevski from the Faculty of Health and Medicine at the University of Newcastle. This project has been approved by the University’s Human Research Ethics Committee, Approval No. H-2017-0312.
My name is Alexandra Denham https://www.newcastle.edu.au/profile/alexandra-denham. I am a PhD student at the University of Newcastle (AU) who is leading the study, “Caring for those who care: A global survey of the health behaviours and health-related needs of informal caregivers.”
This study aims to investigate the prevalence of health risk behaviours and unmet needs of informal caregivers of a person with a health concern requiring in-home care by conducting a global online survey of caregivers. The caregiver groups that we are interested in include, but are not limited to: (1) Alcohol and other drug issues; (2) Alzheimer’s, or other dementia; (3) Cancer; (4) Mental/emotional illness; (5) Mobility/physical disability; (6) Stroke; and (7) Surgery/wounds. However, caregivers will have the opportunity to specify another group if they feel that they care for someone with a different health concern. The survey will be conducted in Australia, New Zealand, the United States, the United Kingdom, and Canada.
With this information, we will be able to develop helpful tools and resources to support caregivers in achieving healthier lifestyles, and address their unmet needs. This will also be the first study
Our survey is now available online from the 16th of March 2018 to the 14th of June 2018.
Please do not hesitate to contact me if you have any questions, comments or thoughts about this study. We would also appreciate suggestions of any other organisations and/or services to contact who may be willing to promote our study through their networks. The research team is available via HealthOfCarers@newcastle.edu.au
Looking forward to hearing from you, and we greatly appreciate your participation.
I am part of a cross-disciplinary and intra-institutional graduate team at Harvard University working on a class project to improve digital services for Veterans’ caregivers (for more information on the class visit www.innovategovernment.org). On behalf of our client at Veterans Affairs and the United States Digital Service, we are interested in speaking with informal Veterans' caregivers who we can briefly interview regarding their daily experiences. Your help is invaluable for our team, as we are using all available information to build a broad understanding of the caregiver space. We look forward to corresponding with you soon. If interested, please send your availability to email@example.com. Thank you!
I am part of a small student team working on our final thesis project, and we are researching the habits of seniors who receive assisted care and their relation to technology - specifically mobile devices and computers. Our end goal is to work with a telecommunications company to create solutions that improve and enhance seniors' experiences with buying, learning about, and ultimately using technology.
I am reaching out to this amazing community in the hopes of getting some first-hand insight about how the people you care for utilize (or don't utilize!) technology.
Please tell me about the experiences with technology and/or telecommunications services the people you care for have had in the comments! Or, if you are particularly interested in the work and research that I am a part of, I would love for you to DM me so that we can have a more in-depth conversation!
Thank you for any and all insight that you can provide!
It was easy to hide the pain when I worked full time and was constantly on the go. Hide the limp, hide the grimace, fake the smile, and no one knew how badly I physically hurt. These actions also hid how badly I mentally hurt too. The feelings of despair and failure that dogged my every waking moment—and still do. Then my mother was “discharged” (and I use that term loosely) from the nursing home and I was able to work from home in order to be a 24/7 nurse’s aid.
I went from sitting at a desk to being on my feet, barely able to sit for 20 minutes at a time. Running a Hoyer Lift, providing bath care and other personal cares, and assisting with physical and occupational therapy. This on top of a full-time job, a couple of side gigs (because the full-time job pays below poverty level), keeping the homestead running, and trying to manage the household. To say that my pain levels escalated and my depression spiraled down as my pain increased would be an understatement.
We’ll forget about my own medical care for a moment. I’ve forgotten about it quite nicely since my primary care physician says she’s not allowed to do anything for fibromyalgia other than the “tv drugs,” and those only work for 30% of the patients who use them. I live in a rural enough area that the specialists my city-dwelling fibro friends see aren’t available or are two or more hours away. So I have kept on doing what I do, which is taking care of everything and ignoring my pain.
Until I experienced being a full-time caregiver, I didn’t know how the medical system completely ignores caregivers altogether. One of the first things I learned since my mom came home was that my pain didn’t matter… my health doesn’t matter as a caregiver. My mom, who used to be my confidant, tells me she doesn’t want to hear about my pain or my worry for her health because it makes her feel bad.
So I live and work with invisible pain, in a place where my pain levels on that stupid 1-10 scale, range around 8-9 most days. I find silent, stolen moments where I’m by myself to cry because the head demons tell me that no one cares, and I don’t deserve care. That I’m broken and flawed.
Through it all, I have to still care for my mother and her 24/7 medical needs. So here is what I have learned about being a caregiver with invisible pain.
Cherish those moments for yourself and protect them like a mother bear protects her cubs.
When you have quiet moments that you can use for yourself, do so. Find something, even just a cup of tea, that you can do for yourself and enjoy without anyone else requiring your energy. Focus on your own projects, and if you don’t have the energy, then focus on relaxing. Curling up in bed with a book, or just curling up for a short nap. Enjoy the moments you have to yourself because they are what will refill your well and allow you to continue caregiving.
Tell your head demons to take a hike.
I know, easier said than done. If you can’t tell those voices in your head to get lost, then at least be able to identify them. Saying to yourself that “this is my depression talking,” at least puts space between it and your daily life. Remind yourself that you are loved and you are seen. Remind yourself that you matter.
Again, something else that’s easier said than done, I understand. It doesn’t matter if that support is a friend, a loved one, or venting on Facebook. Make sure you know there are people, or even just one person, who has your back.
Most of all, remind yourself daily that you are doing the best you can, both with your own personal care and the care you give your family member. There is nothing wrong with taking care of yourself or even knowing when you’re at your limits. Each of us is doing the best that we can, no matter our illness, visible or not.