Project: Caregiver for blind husband

1. Project: Caregiver for blind husband By: annemeyer Class: cre101 sec#; 29485 Instructor: phyllissalsedo Date: December 6, 2011

2. INTRODUCTION • When approaching marriage, the majority of people never envision themselves marrying someone who is not “perfect”. Therefore, caregiver for a blind spouse would not fit into the world’s perspective of perfectness. I apparently do not fit the typical marriage mold. I met and married an amazing man, who just so happens to be blind. Not the typical marrying kind according to society, but this did not deter me. In fact, “65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member” (nfcacares.org). As one of those 65 million, I fully embrace my role of 24/7 caregiver for my husband who is blind, yet sees me through perfect vision – the heart. My project revolved around my life as the spouse of a blind man. Along with media and statistics, this is my story.

3. The Thief of Sight • A little background on my husband and his blindness. Larry was diagnosed at age 4 with type 1 diabetes. Desperate to help their son, my in-laws did everything possible to ensure a reasonably normal life for Larry. Unfortunately, rebellion is a normal part of life, especially during the teen years. Larry was no different. A Big Gulp of Mountain Dew and Twinkies became the regular after-school snack; not for intentionally disobeying doctors advice, but just wanting to be a normal child. • Larry suffered a near-diabetic coma, and it was after that he decided he needed to make lifestyle changes, perhaps a little too late. The thief came and slowly robbed Larry of his vision. The process was gradual, but by age 19 vision was completely gone. This thief has a name: Diabetic Retinopathy.

4. What is Diabetic Retinopathy? • According to the American Optometric Association, “diabetic retinopathy is a condition occurring in people with diabetes, which causes progressive damage to the retina” (aoa.org). Source: http://www.aoa.org/diabetic-retinopathy.xml

5. Symptoms of Diabetic Retinopathy • Seeing spots or floaters in your field of vision • Blurred vision • Having a dark or empty spot in the center of your vision • Difficulty seeing well at night Source: http://www.aoa.org/diabetic-retinopathy.xml

6. What causes Diabetic Retinopathy? • Damage caused by diabetes to the small blood vessels located in the retina. Source: http://www.aoa.org/diabetic-retinopathy.xml

7. Diabetic Retinopathy Results in Needing a Caregiver • Once Larry lost his vision due to diabetic retinopathy, it became apparent to all involved that he would always need a caregiver in some capacity. Humbly, his mother assumed the role of primary caregiver for Larry’s entire life. But, in 2005, the role was about to change. I met Larry in July 2005 and we were married in March 2006. Undeterred by his blindness, I fully embraced the new role as primary caregiver. In both the good times and difficult times, my feelings of being Larry’s caregiver has not changed.

8. General Statistics • 1.3 million people in this country are legally blind. • 39 million people worldwide are blind. • Diabetes is the leading cause of new cases of blindness among adults aged 20-74 years. • In 2005-2008, 4.2 million (28.5%) people with diabetes aged 40 years or older had diabetic retinopathy. • 78% of all adults living in the community and in need of long-term care depend on family and friends as their only source of help. • 51% of care recipients live in their own home, 29% live with their family caregiver, and 4% live in nursing homes or assisted living. Sources: http://www.diabetes.org/diabetes-basics/diabetes-statistics/ http://nfb.org/nfb/blindness_statistics.asp http://www.nfcacares.org/who_are_family_caregivers/care_giving_statistics_cfm

9. Economical Statistics • Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. In every state and DC the poverty rate is higher among families with members with a disability than among families without. Disability and American Families: 2000, Census 2000 Special Reports, July 2005. Source: http://www.nfb.org/nfb/blindness_statistics.asp

10. Economical Statistics (cont.) • Number of working age legally blind adults who are employed: Approximately 30% (National Center for Health Statistics, 1998 National Health Interview Survey – Disability Supplement, 1994 and 1995). • Estimated annual cost of blindness to the federal government: $4 billion (Prevent Blindness America 1994) • Cost of lifetime of support and unpaid taxes for one blind person: $916,000 (Figured using SSI & SSDI average payments and unpaid tax estimates) Sources: http://www.nfb.org/nfb/blindness_statistics.asp http://www.nfcacares.org/who_are_family_caregivers/care_giving_statistics.cfm http://www.diabetes.org/diabetes-basics/diabetes-statistics/

11. Caregiver Statistics • The value of the services family caregivers provide for “free” when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion). • Approximately 66% of family caregivers are women. More than 37% have children or grandchildren under 18 years old living with them. • 20 hours per week is the average number of hours family caregivers spend caring for their loved ones while 13% of family caregivers are providing 40 hours of care a week or more. Source: http://www.nfcacares.org/who_are_family_caregivers/care_giving_statistics.cfm

12. Resources Available for the Blind • BRAILLE ‘N SPEAK THIS IS LIKE A NOTE TAKER. Source: http://www.edb.utexas.edu/ATLab/Clipart/devicepics/BrailleNSpeak.jpg

13. Resources Available for the Blind • CANE TYPICALLY SEEN BEING USED BY A BLIND PERSON TO HELP GUIDE THEM. Source: http://assistivedeviceskey.com/files/2316996/uploaded/1617.jpg

14. Resources Available for the Blind • TALKING BLOOD GLUCOSE METER USED BY PEOPLE, SUCH AS MY HUSBAND, WHO ARE BLIND AND DIABETIC, WHICH ALLOWS THEM TO TEST THEIR BLOOD SUGAR Source: http://cdn.lssproducts.com/images/uploads/6583_1553_large.jpg

15. Resources Available for the Blind • COLOR DETECTOR A DEVICE USED BY THE BLIND TO KNOW WHAT COLOR THINGS ARE SUCH AS CLOTHES, ETC. Source: http://www.maxiaids.com/prodimages/302538.jpg

16. Resources Available for the Blind • DARK SUNGLASSES USED FOR PURPOSES OF BLOCKING LIGHT (LOW- VISION) OR FOR THE COMPLETELY BLIND TO HIDE THEIR EYES. Source: http://library.thinkquest.org/J002084F/sun%20glasses%203.gif

17. WHAT MY LIFE ENTAILS AS LARRY’S CAREGIVER • TRANSPORTATION • Due to Larry obviously not being able to drive, I am his transportation to and from 90% of the places he needs to be. • RUNNING THE HOUSEHOLD • Larry is capable of doing several things around the house but essentially the majority of the work is on my shoulders. • NECESSITIES • Always making sure Larry has what he needs to get through day to day, e.g. hygiene products, diabetic supplies, prescriptions, etc. • NURSE • Helping maintain control of Larry’s diabetes. Staying calm during difficult times in dealing with the disease. • WIFE • I am his wife who pledged to be by his side till death do us part.

18. CARTOONS This cartoon depicts what life would be like for those trying to lead the blind when never having done so before. Also, this cartoon could be seen as depicting a blind person seeking assistance and yet receiving none as all too often the disabled are “ignored” by many people in society. The life of a blind person might not be as lonely if only people would take a chance and see blind people are humans with feelings just like the rest of us. Source: http:www.toonpool.com/cartoons/Blind%20leading%20the%blind_40902

19. CARTOONS This cartoon made my husband laugh out loud. It’s amazing how many things in this world have Braille on them, yet how can the blind know where these items are. The cartoon accurately illustrates really how absurd the types of things are that have Braille on them. In this cartoon, the man proceeds to pass by the “Important” sign and will never even know it was there or what was so important on the sign. Assisting the blind is a wonderful gesture, but practicality is more important. Source: http://www.cartoonstock.com/newscartoons/cartoonists/rro/lowres/rron5101.jpg

20. SUBJECT OF MY PROJECT:LARRY

21. SUBJECT OF MY PROJECT:LARRY

22. AVAILABLE SERVICES TO ASSIST THE BLIND • BRAILLE AND TALKING BOOK LIBRARY (http://www.lib.az.us/braille/) • LUTHERAN BRAILLE WORKERS (http://www.lutheransonline.com/servlet/lo_ProcServ/dbpage=page&gid=01196001360996) • AMERICAN FOUNDATION FOR THE BLIND (http://www.afb.org/Section.asp?SectionID=42&DocumentID=2783) • NATIONAL FEDERATION OF THE BLIND (http://www.nfb.org/nfb/About_the_NFB.asp?SnID=314375369) • AMBUTECH (http://ambutech.com/about/) • FOUNDATION FOR BLIND CHILDREN (http://www.seeitourway.org/about-us/who-we-are) • MAXIAIDS(http://www.maxiaids.com/store/m_company.asp?idstore=0)

23. INFLUENTIAL BLIND PEOPLE HELEN KELLER FANNY CROSBY

24. FAMOUS QUOTES • “God will answer your prayers better than you think. Of course, one will not always get exactly what he has asked for…We all have sorrows and disappointments, but one must never forget that, if commended to God, they will issue in good…His own solution is far better than any we could conceive.” -Fanny J. Crosby Source: http://www.goodreads.com/author/quotes/128744.Fanny_J_Crosby

25. FAMOUS QUOTES (CONT.) • A blind man will not thank you for a looking-glass. • English Proverb • Sometimes, I feel I am really blessed to be blind because I probably would not last a minute if I were able to see things. • Stevie Wonder • There’s none so blind as they that won’t see. • Jonathan Swift • To be blind is not miserable; not to be able to bear blindness, that is miserable. • John Milton • What a blind person needs is not a teacher but another self. • Helen Keller Source: http://www.famous-quotes.com/topic.php?tid=128

26. CONCLUSION • This project has been one that enabled me to learn more about the blind and their caregivers. Before I started researching the topic, I was mainly aware of what my personal role as caregiver to the blind entailed. Being a caregiver to someone you love really takes the term “caregiver” to another level. Many people care for the disabled in various capacities, but when it is your loved one, something deep within your heart is moved and giving all the devotion you can seems merely second nature. • Jumping into the role of a wife to a blind man is not for everyone, and it certainly does not make me someone extra special. Something just sparked in my heart the day I first met Larry and without hesitation I embraced this new role of caregiver. • In conclusion, providing unconditional love and care to a disabled person is not always easy. Take a moment to get to know the person and you might be surprised in how they are so much like you and me.

27. WORKS CITED • http://www.aoa.org/diabetic-retinopathy.xml • http://www.diabetes.org/diabetes-basics/diabetes-statistics/ • http://nfb.org/nfb/blindness_statistics.asp • http://www.nfcacares.org/who_are_family_caregivers/care_giving_statistics_cfm • http://www.edb.utexas.edu/ATLab/Clipart/devicepics/BrailleNSpeak.jpg • http://assistivedeviceskey.com/files/2316996/uploaded/1617.jpg • http://cdn.lssproducts.com/images/uploads/6583_1553_large.jpg • http://www.maxiaids.com/prodimages/302538.jpg • http://library.thinkquest.org/J002084F/sun%20glasses%203.gif • http:www.toonpool.com/cartoons/Blind%20leading%20the%blind_40902 • http://www.cartoonstock.com/newscartoons/cartoonists/rro/lowres/rron5101.jpg • http://www.lib.az.us/braille/ • http://www.lutheransonline.com/servlet/lo_ProcServ/dbpage=page&gid=01196001360996 • http://www.afb.org/Section.asp?SectionID=42&DocumentID=2783 • http://www.nfb.org/nfb/About_the_NFB.asp?SnID=314375369 • http://ambutech.com/about/ • http://www.seeitourway.org/about-us/who-we-are • http://www.maxiaids.com/store/m_company.asp?idstore=0 • http://www.goodreads.com/author/quotes/128744.Fanny_J_Crosby • http://www.famous-quotes.com/topic.php?tid=128