I have arthritis so I cannot offer Much aid getting her to and from everywhere. Purchased a transport wheelchair for trips to doctors appointments. My husband is strong !
This is a new situation for us. No siblings to help us. I have children that can help out when they aren’t busy with their families!
I have no idea how to find care to help us. Who do I trust? Any names you can offer? Don't know how we can afford care. I hear it’s costly. She has Medicare and a secondary plan. Just has social security as her income.
we plan on selling her small home in the spring. Need to clean it out and prep it For the sale. (That’ll be time consuming.)
From what I read on this helpful site... It makes me scared!
Thank you!
Are we allowed to exchange e mails, if anyone wants to e mail privately? Or not a good idea?
If you are the US, find out who your local Area Agency on Aging is. Call them and ask for a "needs assessment" for your mom.
You need to find out what help mom is eligible for. The AAA can help with that.
Before you sell the house, you should consult with a certified Eldercare attorney who understand Medicaid eligibility.
Remember that your mother's money pays for her care, not yours.
You can Private Message people. Click on their name and you will be taken to their profile and there is a place to send a message it can be private of it could be viewed by others just indicate what you want.
You can contact an agency and they will have a manager interview you, and you interview them as well. Determine what you need first so you can tell them. Ask them what protocol they follow and what their employees follow to keep safe.
I would interview more than one agency if possible.
And when they send you a caregiver take time to interview them. Let them know what your expectations are. Have them written down. Maintain a schedule of what they are to do. but most important is your mom so if she does something to throw off the schedule learn to go with the flow!
So you find out what type of blindness she has and so know what type of treatment might be available to her and get an idea of what her “field of vision is”. So you can imagine seeing how she sees the world and create a space that works best for her.
To go “recently blind” is kinda unusual..... most blindness builds up over time due to a disease like diabetes or glaucoma. Did she have a chemical exposure or trauma to her eye or head?
Like for my MIL she had “wet” macular degeneration and glaucoma; her peripheral vision was zero; she was noncompliant on doing her glaucoma drops for eons before too. And when it finally dawned on her how serious it all was, did those anti-VEGF injections into her eyes to try to stop degeneration.... which was painful and did nothing to change her situation. Her blindness happened over likely 2+ decades. She was most difficult. I will say for her, she got loads of items for free or on loan from Lighthouse for the Blind, like table & lap top magnifiers to help her read.
But for my dad, he had diabetic retinopathy and lacrimal insufficiency from chemical and nuclear exposure that etched his cornea. He was “blind” in that his field of vision was compressed so could not continue his job due to this but still could see for regular activities; he was legally “handicapped due to blindness” from the exposures and got early retirement. For dad, being type 2 diabetic, made all this even more at risk. But he was really good at watching his diabetes. He did a lot of adaptive behavior to compensate for his compressed vision. He died during heart surgery, nothing related to his blindness.
and then there's vision stuff that happens with some dementia’s. If they have some degree of partial blindness the having dementia can make matters more difficult for family to deal with. My mom had Lewy Body Dementia and 1 biggie with Lewy is that they “see” stuff that isn’t there. For my mom it was 2 things, animals and flooring. She saw cats and rabbits.... like over there in a corner, nonthreatening, just sitting in a semi dark, dappled light area. They stay pretty cognitive & seem competent on Lewy and she was totally believable first couple of times “there were cats”...... like I asked others on her floor at her IL if their cat was MIA. She also saw flooring different that how it actually was.... like surface looked like cobblestones rather than the flat plank floor it was. She’d step hesitantly as if the floor was uneven. Would happen occasionally like the I see cats did. ((Personally I think it’s that something happens with Lewy plaque buildup in their brain that flakes off and interferes with how they see shadows and lighting.)) When she got into later stages of Lewy, after she was in a NH! it all stopped. But if mom had some degree of blindness along with Lewy, there’s no way she could have lived on her own, or in IL as long as she did.
Really “needs assessment” as a first step.
- unless her home sells for over $300k / $350k, the long term situation for her will be that she runs out of $ and will need to eventually apply for Medicaid, maybe initially community based Medicaid (as she’s living with y’all) and then eventually LTC facility based Medicaid (as the level of care needed is best done in a NH or other facility).
- as she’s looking at a Medicaid application eventually, you as her DPOA, need to be aware at just how much financial details Medicaid will require from her, years and years from now. Imho you need to right now start thinking what she spends her $ on and if it could be an issue for Medicaid. Her money needs to be used to pay for the whatevers to get her home market ready for next spring, her $ needs to have paid for that transport wheelchair, needs to buy her clothes, visits to the beauty shoppe. Her money NOT yours. The issue is that Medicaid can look at any $ given to you as “gifting” from her to you. Gifting is not allowed by Medicaid & can place a penalty on her eligibility for Medicaid. Medicaid tends imho to look at anything we do for our parents as done out of a sense of familial duty and for free.
- To establish that it’s not this, you’ll need some sort of legal rental agreement (so mom pays rent) or a personal caregiver agreement (so mom pays you to “care”); or if it’s $ to be spent on her property, so sort of Promissory Note or Memo of Understanding as to being repaid. You can’t be reimbursing yourself here & there as stuff gets paid for; it’s going to be beyond a hot mess to unthread say in 2024 when mom needs to get placed into a NH ASAP. None of these are DIY imo & just what works best very much interdependent on your state laws, how your states Medicaid program is administered and what tax-wise works for you. Really plan on finding an elder law atty who works with Medicaid applications and come up with options as how to deal with mom’s future finances and get all her legal updated as well. Meet before house gets sold as thete might be ways for her to do a more creative spend down to get her Medicaid ready than you’d think.
1) call Area Agency on Aging (AAA) for an evaluation for services
2) Do you have a special low vision optometrist? If not, find one that specializes in low vision. They will help you identify services and equipment that will help utilize any vision she may have left.
2) call the state agency for services for the blind and disabled. In some states it's a separate agency, in some states it's part of disability services, and some places it's hidden in human resources. The AAA may be able to refer you to the proper contacts. They agency for blind will help you get special services and adaptive equipment, often a no or low expense
3)Call you local library and ask about the National Library Service of the Library of Congress for Blind and Disabled. They can provide you with a special talking book reader and unlimited talking books free of charge.
4) Get an Amazon Echo or like piece of equipment. That can provide her music, news, reminders, weather, etc.
5)Look through some Low Vision Catalogues available on-line. You'll find things that make her life easier like a talking watch and a talking clock. I love the sticky rubber buttons that help my dad identify where to push the tv remote and the 30 sec. button on the microwave.
Depending on any vision she may have left all of these people will help you make the most of it. My dad has had limited vision from both glaucoma and macular degeneration and a retinal occlusion (totally blind in one eye) for at least 10 years. He lives very "independently" in an assisted living apartment. Although it seems like the end of the world it is not. Keep breathing. And feel free to PM me if you think I can provide any help.
Great advice from posters. Wishing you all the best in this challenging situation.
Sounds like you are exhausted. Don’t push yourself until you are running on fumes.
Follow the advice given by the posters. Hopefully you will receive relief and answers soon.