In 1991, when Mark was at Western Rehab after our automobile accident, the internet was unheard of so went to their Resource Center. This facility mostly cared for stroke and traumatic brain injury (TBI) patients so their Resource Center was full of material on those two topics. I wanted information that would help prepare me for our circumstances. I wanted to learn how I could be helpful and supportive for Mark, so I checked out books concerning TBI.
While I was in the Resource Center, I noticed a video (yes, this is before the days of DVD’s) on how to transfer a patient to the wheel chair. It felt like we were always waiting for two aides to be available to transfer Mark, so I checked it out and watched it that night. The next morning when I went back to Western Rehab I told the physical therapist I’d like to try to transfer Mark. Since I had just recovered from a broken collarbone (from our accident) she questioned my strength. I told her I thought I could do it and told her I’d watched the step by step video. She was willing to work with me and it went well. The video gave me the confidence I needed to ask if I could start transferring him. The disadvantage of my learning to do this was Mark then preferred me to do all transfer. So if the aides wanted to transfer him, he would ask them to wait until I got there.
Knowledge gives you power and the unknown becomes less fearful. When my daughter, Katie, was at the Huntsman Cancer Institute, I saw their amazing Learning Center. You can check out books, audiobooks, CDs, videos and DVDs for free. You can get answers to questions about cancer topics and help prepare for your next medical visit. You can learn about types of cancer, treatments and side effects, alternative treatments, coping and caregiving. The free library is beautiful and opened to everyone. You can email them at patient.education@hci.utah.edu or call toll free 1-888-424-2100.
I called the Learning Center and told them about my blog and that I was interested in information about caregiving. The librarian was informative and helpful. She emailed the following links:
Helpful Websites
- Caregiver Action Network: http://caregiveraction.org/
- Caregiver Guide (Utah Department of Health): http://ucare.utah.gov/caregiver_guide.html
- Circle of Sharing (American Cancer Society): https://circleofsharing.cancer.org/default.aspx
- Family Caregiver Alliance: http://www.caregiver.org/
- Lotsa Helping Hands: http://www.lotsahelpinghands.com/
- My Cancer Circle: http://mycancercircle.lotsahelpinghands.com/caregiving/home/
- National Alliance for Caregiving: http://www.caregiving.org/
- Well Spouse Association: http://www.wellspouse.org/
- Young Cancer Spouses: http://www.stupidcancer.org/ycs/
Caregiving Materials
- When Someone You Love Is Being Treated for Cancer (National Cancer Institute): http://www.cancer.gov/cancertopics/coping/when-someone-you-love-is-treated
- PDF booklet: http://www.cancer.gov/cancertopics/coping/when-someone-you-love-is-treated.pdf
- Caregiver Burnout (Huntsman Cancer Institute): http://healthcare.utah.edu/huntsmancancerinstitute/cancer-information/resources/factsheetpdfs/caregiver_burnout.pdf
- Caregiver Support (Cancer.Net): http://www.cancer.net/coping-and-emotions/caregiver-support
- Caregiving (Cancer Support Community): http://www.cancersupportcommunity.org/MainMenu/Family-Friends/Caregiving
- Caregiving for Your Loved One with Cancer (CancerCare): http://www.cancercare.org/publications/1-caregiving_for_your_loved_one_with_cancer
- PDF: http://media.cancercare.org/publications/original/1-ccc_caregiver.pdf?1342123192
- Caring for the Caregiver (National Cancer Institute): http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver
- PDF booklet: http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver.pdf
- Caring Advice for Caregivers: How Can You Help Yourself? (CancerCare): http://www.cancercare.org/publications/47-caring_advice_for_caregivers_how_can_you_help_yourself
- PDF: http://media.cancercare.org/publications/original/47-fs_caregivers_eng.pdf?1368046715
- Coping with the Stress of Caregiving (CancerCare): http://www.cancercare.org/publications/142-coping_with_the_stress_of_caregiving
- PDF: http://media.cancercare.org/publications/original/142-fs_caregiving_stress.pdf?1365603534
- Facing Forward: When Someone You Love Has Completed Cancer Treatment (National Cancer Institute):http://www.cancer.gov/cancertopics/coping/someone-you-love-completed-cancer-treatment
- PDF booklet: http://www.cancer.gov/cancertopics/coping/someone-you-love-completed-cancer-treatment.pdf
- Family Caregivers in Cancer (PDQ©) (National Cancer Institute): http://www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/patient
- print-friendly: http://www.cancer.gov/cancertopics/pdq/supportivecare/caregivers/patient/page1/AllPages/Print
- If Your Loved One Has Been Diagnosed with Cancer: Cancer Resource Guide (National Business Group on Health and National Comprehensive Cancer Network): http://www.businessgrouphealth.org/pub/1d3b0ba8-782b-cb6e-2763-971c7ce57f84
- Managing the Practical Concerns of Your Loved One’s Diagnosis (CancerCare): http://www.cancercare.org/publications/144-managing_the_practical_concerns_of_your_loved_one_s_diagnosis
- PDF: http://media.cancercare.org/publications/original/144-fs_caregiving_practical.pdf?1365603482
- Young Adults as Caregivers (CancerCare): http://www.cancercare.org/publications/141-young_adults_as_caregivers
- PDF: http://media.cancercare.org/publications/original/141-fs_ya_caregivers.pdf?1337090706
Communication
- Communicating When a Loved One is Ill (Huntsman Cancer Institute): http://healthcare.utah.edu/huntsmancancerinstitute/cancer-information/resources/factsheetpdfs/communicatinglovedoneill.pdf
- Communicating with Loved Ones (Cancer.Net): http://www.cancer.net/coping-and-emotions/communicating-loved-ones
- Communication in Cancer Care (PDQ©) (National Cancer Institute): http://www.cancer.gov/cancertopics/pdq/supportivecare/communication/patient
- print-friendly: http://www.cancer.gov/cancertopics/pdq/supportivecare/communication/patient/page1/AllPages/Print
- Communication Tips (Huntsman Cancer Institute): http://healthcare.utah.edu/huntsmancancerinstitute/cancer-information/resources/factsheetpdfs/communicationtips.pdf
- Listen with Your Heart (American Cancer Society): http://www.cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/listenwithyourheart/index
- PDF/print-friendly: http://www.cancer.org/acs/groups/cid/documents/webcontent/002873-pdf.pdf
- What Can I Say to a Newly Diagnosed Loved One? (CancerCare): http://www.cancercare.org/publications/104-what_can_i_say_to_a_newly_diagnosed_loved_one
- PDF: http://media.cancercare.org/publications/original/104-fs_loved_one.pdf?1302558150
Holidays
- For Caregivers: Coping with Holidays and Special Occasions (CancerCare):http://www.cancercare.org/publications/2-for_caregivers_coping_with_holidays_and_special_occasions
- PDF: http://media.cancercare.org/publications/original/2-ccc_cgholidays.pdf?1302555416
- Caregiving During Holidays and Special Occasions (CancerCare): http://www.cancercare.org/publications/145-caregiving_during_holidays_and_special_occasions
- PDF: http://media.cancercare.org/publications/original/145-fs_caregiving_holidays.pdf?1339212735
Advanced Cancer/End of Life
- When Someone You Love Has Advanced Cancer (National Cancer Institute): http://www.cancer.gov/cancertopics/coping/when-someone-you-love-has-advanced-cancer
- PDF booklet: http://www.cancer.gov/cancertopics/coping/When-Someone-You-Love-Has-Advanced-Cancer.pdf
- Caregiving at the End of Life (CancerCare): http://www.cancercare.org/publications/63-caregiving_at_the_end_of_life
- PDF: http://www.cancercare.org/publications/63-caregiving_at_the_end_of_life
You can search other topics by using their online library catalog at www.huntsmancancer.org/clc (Select “Search Our Library” on the left-hand side).
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Great info! Thanks for sharing and doing the research for others to benefit from!
Thank you for reading and making it worthwhile!
We used to have one here up at the old hospital before the new hospital moved in and shut it down.
Now thank goodness I have the internet to do research on.