Caregiving for my blind husband

[Winterbaby60]

Hi. I'm new here. My husband has a genetic disease that started in 2003 and has progressed to the point that he cannot see at all. I am on call 24/7 and I feel burned out. I don't really have much time for myself and in some ways his blindness has had a catastrophic effect not only on him, but for me too. We never go anywhere, and I think the fact that he can't see is the reason why. But I keep asking myself what about me? 

[sbiondo]

My husband was origianally diagnosed w early onset Alz at 56. We went to Duke Medical for care. A year and a half they diagnosed him w “Posterior Cortical Atrophy” , a rare disease only affecting the young. I believe to this day that is what he has. It has helped me navigate his life for 13 years w/o a proper diagnosis. He passed away recently, peacefully and in my arms at our home. It was a long, arduous venture but I would do it again. 

[NathanS563186]

Sounds like a good first step might be getting in touch with local resources that provide respite care - someone to be with your loved one while you take a break for a few hours.  I found the info below online. 

For more information about respite care and taking care of yourself, read FCA’s Fact Sheet Taking Care of YOU: Self-Care for Family Caregivers.

To find respite services available in your community, contact the following resources:

ARCH National Respite Network a service to help caregivers and professionals locate respite services in their community.

archrespite.org/respitelocator

Eldercare Locator

Connects older Americans (60+) and their caregivers with the local Area Agency on Aging’s Family Caregiver Support Program, which provides respite assistance, support groups and other services for caregivers.

eldercare.acl.gov

National Adult Day Services Association (NADSA)

NADSA is membership organization with a directory of adult day services across the country.

www.nadsa.org

AARP is another great resource for all things aging related.  Their website is www.aarp.org and it is brimming with information, resources, and tools for every area of life.  This link is to their resource guide on family caregiving:  https://www.aarp.org/caregiving/?CMP=EMC-MIM-GOI-OTH-CG-1282201-1574104-6634805-NA-20220908-BacktoSc...   

AARP's article Fantastic New Tech for People with Low Vision or Blindness reviews several new assistive devices that may improve your husband's experience: 

1) OrCam MyEye Pro:  a pair of glasses with an attached camera that captures an image of what's in front of you and communicates the info audibly through a tiny speaker that rests above the ear. 

2) WeWalk Smart Cane:  uses ultrasound to detect obstacles that are above chest level and can wirelessly connect to a smartphone for audible GPS navigation. 

The article also reviewed several devices for low-vision individuals:  3) eSight Headset houses a small camera that captures everything the wearer is looking at  and allows the user to zoom in or out as needed on the image projected onto the headset. 4) IrisVision headset uses virtual reality to project reality onto a screen and gives the wearer control of how close or far away the image appears.

I encourage you to visit the reference librarian at your local library.  They are very happy to help people find information and resources and will put it all together for you in either electronic or printed format.  

[KCN22999 · Accepted solution]

Google this: "Resources for blind spouses,"

this one sentence came up with 15 separate resource sites, even support groups for spouses. You can reword this for more results using your location/town/area,

and use different search engines (Firefox, Safari, Chrome, Bing, Duck Duck Go, All the etc) and research resources for seniors, disabilities, state and county resources for seniors. Be aware if your city has a School for the Blind, local library Talking Books, Senior Center, Optometry/eye doctor, many local public services (After School children Programs, YMCA, Veteran, Aging in Place, Public Transit, etc) of disabilities know what is offered in your area. Blindness doesn't discriminate- research all age groups, keep notes so you have info/knowledge at fingertips and cull.

Who knows-this may work into something that makes you both happy.

[JohnS857378]

Was diagnosed with wet AMD in 2009. It progressed to the metrics of blindness. If you cannot read eye chart you are "blind". Medicine was available in 2012 & beyond. Try going to low vision support groups, at community centers, senior centers, et al. Maybe your coping skills and experience will help others & make positive impacts.☺