What to do when you have a fixed income, small savings but do not qualify for Medicaid? I’m spending $500/mo for husband's hygiene needs.

evita, I read your profile and you both are so young to be going through all of this, plus needing to be there for your 97 year old mother who is in a nursing home. This isn't the type of retirement any of us had planned upon. It's definitely not fair.

I can understand your own feelings especially when diagnosed with a serious illness. Was glad to read that you are now in remission, but the treatment for breast cancer can leave a lot of lasting side effects. Especially those pills one needs to take for 5 to 10 years. I couldn't deal with the side effects any longer so I tossed those pills after 4 years :P And I started eating organic foods, do feel better. Organic corn on the cob is wonderful this time of the year :)

Yes, go see the "Elder Law Attorney", I know I was glad I went. I even had my very elderly parents [also in their 90's] to have all their legal documents updated, as everything they had was older than dirt, and filled with landmines as they didn't use a specialized Attorney in the far past. Anyhoo, an Elder Law Attorney knows the ins and outs of Medicaid, and will guide you.

Find something to do that you find relaxing, anything to allow you some brain space. You are clearly completely stressed and this is making being about to prioritise difficult. If you read what you have written, your post is nothing to do with your title which shows how overwhelmed you are.. Please try and make some time for you that will enable you to approach things without the stress and panic.

1. Is your husband a Veteran? If so many supplies are covered and provided by the VA. Also if he is a Veteran depending on where and when he served he may qualify for a LOT more. Please check with a local Veterans Assistance office.
2. Depending on your husbands other medical conditions he may qualify for Hospice. (It can not hurt to call and ask, no longer is the time on Hospice 6 months or less, my Husband was on Hospice 3 years) Many Hospice will provide incontinence products as well as cream, gloves and other supplies. Not to mention you will get someone in to help a few times a week. And you can request a Volunteer that will come in and stay with him while you run errands or just take a bit of Me time.. (Medicare requires the 5% of the cost of patient care be Volunteer time)

Money seems to be part of your stress. If you haven't already, please contact your Area Agency on Aging and let the social workers there help determine what services you and your husband qualify to receive. You may not qualify for Medicaid due to your savings, but you still might qualify for SNAP because it's income based and that $500 you are spending on hygiene needs is a qualifying expense for SNAP, so is your husband's insulin and any other medications the two of you are taking.

My understanding of Medicaid qualification is in most states your savings can be split between you and your husband. You will still need to spend down his share of the savings before he can qualify for Medicaid but that will still leave you with some savings remaining.

Since it’s going to take some time to secure financial assistance and other assistance for your husband’s needs......consider visiting local thrift stores. My local goodwill often has a table full of brand new adult diapers and pads. Check locally owned thrift stores-I went to one yesterday and they had a small wall full of incontinence supplies! I was shocked! If you’ve got a local flea market, I’ve seen supplies at flea markets too. Good luck!

Try again to fit a therapist into your mix and get your elder care attorney's office a call for emergency consultation. You have challenges that are unique. Be grateful that your courage & character have sustained you this long. I admire you, and anyone that reads this that has moral fiber will feel the same.

Big hug to you! Know you are not alone on the fixed income, sick spouse, sick self. Due to continual job flux for the first 10 yrs of our marriage (my 2nd), we don’t have the savings we should. And with chasing work, paying to move out of our own pockets, incomes were never enough to save much. It’s hard, I agree! It was forced into retirement, medical stuff, despite being able to work remotely when we relocated to a lower cost of living retirement area., Employer would have none of the remote work. I’m now too ill to work anymore -my last few years in the workforce were so difficult due to my own poor health. Now facing hip replacement, plus two knees replacement. Hubs had lung lobectomy for cancer last Dec, many complications, 2nd emergency surgery a week later-GI bleed. Nearly lost him on the 2nd one. Despite being barely able to stand up, for the pain, I’m the caregiver here. Medical supplies are horrifically expensive, I agree. Good to know to check Goodwill & other thrift stores for incontinence supplies.
We use the Walmart Relion Prime blood glucose meters & strips here, (both of us T2), as they are cheaper than our drug plan copays, & sufficient for our needs. I check my Blood sugar whenever I go for labs, so I can check the fasting blood glucose number on my meter against the one obtained during the blood draw, as my way of assessing my meter’s accuracy. Maybe you can save there on diabetes supplies?
I just had to lay out over $4000 for a portable oxygen concentrator for myself, entire cost falls on the patient. That included the lifetime warranty, but I’m not that old, could use the machine many years, and I absolutely need the portability in order to be his caregiver.
I agree, the medical products we need are horrifically priced! I have a walker here, from hubs’ December hospitalizations disaster, he’s not using at this time. Will be needing that after my surgeries initially. I am currently looking at getting the raised potty seats for myself for the hip surgery, having been through this with one prosthetic hip over twenty years ago. They aren’t that expensive, but the wait to get home health assessment after one gets home from surgery, is going to force me to shell out of pocket. And we need a shower chair/bench as well. We got by without one when he was so ill some months back, but my own unsteadiness with three more joints being bionic soon, (knees buckle for the damage), I need to purchase. With my gut, liver, and bladder issues, I’m also looking at incontinence products for myself before long. I can’t say what’s more dignity-sapping - wearing oxygen, depending on walkers/canes to ambulate, or the incontinence issues from bladder spasms, IBSD, BAM, and symptomatic diverticular disease. My lifelong hypothyroidism is a blessing, compared to the rest of this package!
Besides other’s suggestions on thrift store incontinence supplies, if you do not have a cash back credit card, you might benefit from one. I have the AMEX Blue Cash Back Card, Run all household expenses through it, even online property tax payments. Plus you get 6% cash back, up to $6000 per year on groceries. Even with yearly card fee, I end up with decent cash back every month. I get gas cards at grocery store, when they run the $10 off. AMEX doesn’t see that as part of my groceries purchase, so I end up getting $50 gas card, discounted to $40, plus 6% cash back on the $40, bringing cost of gas card down to around $37 for $50 worth of gas.
Here in GA, disabled seniors get a sizable property tax break, and no school tax. Check for possible discounts there. Also check with your electric power company for possible discount.. We don’t yet qualify, but I check periodically for new discounts.
High medication costs, I sometimes use CanAm for imported prescription drugs. They will tell you the price plus source, when you inquire. It is sometimes cheaper than the copay using your insurance. My FL gastro put me on to them for a safe source. Shop price!

Depending on your assets and income, at least one of you should qualify for Medicaid. Especially in New York. If your income is stressing you out, why not go back to work? Saving for retirement is what you should've done the past few decades. But you couldn't/didn't, and now your here so the only thing you can do is make the best of a bad situation and keep moving forward. As to the burnout, talk with a support group in your area or call the Alzheimer's Association, they'll gladly help you out.
You've already taken the first step towards being proactive by scheduling time with an elder law attorney. Just take it from there. Good luck!

Is your DH a veteran? The VA will assist you in NYC. They did everything for my brother when he became disabled.

Also, some drug companies will assist with medicines.

Elder Attorney is a good idea!

As working class retirees, many of us never made enough money to save that recommended $1 million for retirement. (Does that mean $2 million for a married couple?!) We’ve saved the best we could. Not enough.

A few practical suggestions, reasonable cost. Purchase energy efficient light bulbs as you go, if can’t replace all. Our home has only emergency efficient bulbs/fixtures.

I purchased a counter top toaster oven/rotisserie. Uses much less electricity than full size oven, rotisserie chicken at home is half price of a deli rotisserie chicken. The Toshiba was under $100.

Finally convinced hubs to be onboard with a small freezer, to allow me to take advantage of meat sales. I found a 5.3 CU FT one, dented, for in the garage, on sale, additional markdown for dents, for $155. It is perfect for our needs, chops off a good deal from grocery budget, when only purchasing on sale.

if you have a dog, consider making your own dog food. I have a dog on expensive prescription dog food, for her tendency to get pancreatitis. After two $1000 emergency surgeries, to figure out the cause, the homemade food replicating the expensive stuff, plus doggy vitamin, saves a lot. Make one month worth at a time, freeze in containers, five days worth, thaw as needed.

The old cook once, eat twice maxim saves not only cooking time, but gas or electricity cost as well. I’m freezing the second cooked meal, cooking double batches each dinner, for when I have surgery.

With your hubby’s health issues, I’m venturing the guess you don’t get out much. Maybe try to only take your car out when you have three or more errands, make best use of fuel and your limited time.

Consider downloading Ibotta, for small amounts of cash back, quite a few stores offer cash back, a couple of grocery stores, Amazon, Walmart. Example: link your customer information with Ibotta. Select the offers you want to use. Then order $100 worth of groceries online through Walmart or Amazon, by first entering the website through the Ibotta link. Once you have $25 cash back credit, you can get the cash back. Now I just have to remember to do it.

If you have a local farmers’ market or produce stand, go when near to closing time; often get your produce at reduced prices end of day, so they don’t have to pack it up and transport back to the cooler. We have something here called Everybody Eats Fresh, once weekly, with free produce distribution, bring your own bag. Very popular with retirees as well as working poor.

If any of your meds are tablets that can be split, ask if you can be prescribed double strength medication, use pill splitter, to get the prescribed dose, at half the copay cost.

if you have emergency fund in low interest CDs, consider taking advantage of bank promotional for opening new accounts. I picked up $850 last year moving emergency money from bank to bank. Be sure to satisfy all the fine print. It’s fast, easy money. Not a lot, but we retirees are looking for the big picture, stretching the overall budget.

For every purchase not made at a thrift store, check price online, and check for discount codes online, for online shopping. No sale, no discount code, not BOGO, sorry, won’t buy this week. I can be stubborn like that. Once you have a good pantry, you only buy sale items you actually use.

I’ll be following the suggestions on Medicare and elder care resources here, to try and reign in expenses further, and obtain community resources as available to us.

i Can imagine how stressful your situation must be as finances are a struggle for me as well. I’m getting angry with the replies Im reading. While I don’t have any to offer, people who suggested energy efficient light bulbs, thrift store shopping and going back to work are inconsiderate idiots. That doesn’t help your Problem. They might as well have said stop eating a meal or two and watch how much you’ll save. Sheesh. I hope you can find some type of state program that helps with his needs.

Check to see if you are eligible for your State’s Medicare Savings Program. It helps with premiums and copays. It is not Medicaid, but has some income and savings restrictions by tiers. See your State Aging Department.

I truly feel for you, and will earnestly pray for you. I dont know if you are a believer in christ or not, but and good church family is a blessing, and sometimes the only thing between sanity and a nervous breakdown. Please find a good church if you dont have one,
They will take you in and help, with everything and anything finances and loving care to counciling.

My first suggestion is to move some place that is less expensive to live and has lower taxes. I realize this might be difficult, but it is necessary sometimes.

As other people said, there are possible resources from the state and check into local churches or synagogues. From what you have written, it sounds as if you have no family, friends, or neighbors for support. This is one of the worst things about your situation. Please try to find a group that you feel comfortable with and get some emotional support at least.

Praying for you.

Ask your Dr. about any care that they know of, i.e. to help with your husband's bathing, etc. Call your insurance company - you say you have supplemental - it may be that your Dr. can order some add'l care, at least for a period of time, for your husband as there may be something through medicare. Call your local area on aging group and see what might be available. Finally, you are both young, but your husband's conditions may qualify him for help through hospice. This is -not- end of life care, but care in your home based on diagnosis that would include bathing, some supplies and visits. It may not be time for that, but you could check into to know. Hope things improve for you.

Retired and living on a fixed income with only small savings is a tall order in NYC. If you and your second husband both paid into the NYS payroll tax system, then I would urge you to remain in-state and start investigating cheaper cities Upstate. There are plenty of articles dedicated to "best places" for retirees that have a lower cost of living than NYC. In the event you need to place your husband into a care home, they will be cheaper Upstate. Please let us know what your attorney says.

I assume you have filed for disability?

I am so so glad you are going to see an elder law attorney and hope you have found one that charges not by the hour so much as by the task. Ours was a blessing. They will better understand the medicaid process and may have info you do not know to reapply for coverage. I wonder...though I hate to consider/mention this if, because of the idiocy of our system you might fair better getting legally divorced. Clearly you can't go on like this. I'm sure once you get some info you will feel better and better able to plan. I hate to also say this but is it possible your spouse is so challenging that family is not there for you? As in would they be if his needs were taken of, for you? Or friend(s)? My suspicion is more and more of us will need to share space to survive and thrive, those of us without family member. Please let us know how things turn out. Be sure to let the attorney know about the potential settlement. Timing may be a factor.

Florida Has something called medically needy for those who don't qualify for Medicaid. You get a case number and fill out the form on Access Florida website. You have to provide a financial release form. They will assign an amount that you will have to meet before they start to pay in the event of an emergency. As for prescriptions, Please use Goodrx.com & Check with Costco, as they price above cost very different from others. Most pharmaceutical companies will also give you a break if you appeal to them so check out the site of the brand pharmaceutical company. Also check with Canadian drug companies that are legitimate. That's the only way I can afford my hormones.

doesn’t your husband qualify for medicaid? If no, when you have spent your savings you might then qualify for medicaid. I know this is hard to hear, but that is probably what will have to happen, and I agree, it’s not fair.

I am sorry that you have had such a difficult journey and now you are facing financial ruin.

Have you talked to your insurance company to find out if they will cover any in home help?

I would contact the MS association to find out if they have any services that you can get.

I would contact his doctor and ask about hospice, they will bath him and he will be eligible to go to a hospice facility to give you some respite.

I would check with every charitable organization in your area and find out if they offer companion sitting, it is usually an adult babysitting situation. Someone comes in to be with your husband while you get out. No hands on caregiving at all, no brief changes, no meds, they can offer food and drink that has been prepared and left.

Contact your local area on aging and they can help you find local resources.

Go to www.nelf.org and find a certified elder law attorney that can help you protect your future security and help you find assistance for your husband. Interview several attorneys, good ones will offer a free consultation, if they don't, move to the next name. Get pricing and ask if it is hourly what type of money are you looking at. You will be their boss, so you want to feel comfortable and free to speak your mind. If someone offers a package deal, do your due diligence, I personally think that you are paying to much and for things you may not need. A good attorney will be honest about how much money and what you really need to be protected and prepare. Find one that encourages you to do the things you can to save money on your bill.

It will take some work on your part, but you will find resources. Hugs! You can do it!

Ask your town's elder case worker and social worker for suggestions on what you should do. These are dedicated people whose job is just that - to help people.

DEPENDS WHAT COUNTY YOU ARE IN BUT YOU CAN CALL DEPARTMENT OF HEALTH AND HUMAN SERVICES THEY WILL COME OUT AND HELP YOU.

https://aging.ny.gov/Index.cfm

Have you contacted the local AAA?

If you are having difficulties accessing services, call 311 and tell them that you need to talk to an elder services social worker to help you get services arranged.

My heart feels your pain because I feel you've described what is happening to me exactly. It took courage to say what you've said. I was granted Disability in late 2014 for Caregiver Burnout with PTSD. It continues to be a struggle. Every door has been closed with assistance. I have decided to rent the room out in our home which is in Southern California and commands above-average rent of over 1200. per month and take those funds for a 3/4 time Caregiver. I don't know if you have thought of something like that, but I choose to look at the cards I have been dealt and now I need to play them. BAD THINGS HAPPEN TO GOOD PEOPLE. Reach out to people. Join a caregiver support group. In my case I go to Alanon Family Groups. Call every resource help line out there. States have Federally mandated Area of Aging, your County may have a Health Care District which can assign you a case manager at no cost, there is Ombudsmen when the care of my husband becomes questionable. The Center for Quality Care with Medicare when hospitals or SNF's fall short and even Adult Protective Services was contacted because of the poor care we received with KAISER SENIOR ADVANTAGE. Demand Palliative Care from your insurer for your LO. It's one tier before Hospice and is for management of a serious illness. They can bring in P/T, Psychologists, Clergy, RN's to support you and your LO. I again feel your pain, but I refuse to let this journey of watching my love one suffer and pass take me with him.

I am just wondering, what hygiene supplies do you use that run you $500 a month? I wait for the sales at Walgreen’s (buy one, get one half off) and stock up. I can buy enough diapers for six weeks for under $100. I do the same with bed pads, no rinse body wash and gloves. But, having said that, I completely understand how you feel as we filed for bankruptcy this year and even then, I am still walking a financial tightrope. Get on the Internet and research help in your area. That’s what I’ve done and continue to do. Good luck. Holding good thoughts for you.

FYI...This might be something to check out in your community...The Senior Center where I am has a Diaper Bank and people bring in briefs when they are no longer needed or they just donate them and anyone can come in and "withdraw" briefs if they need them.
This might help out some.
And often Costco puts the large boxes of Depends on "sale" for $8.00 off. I never had a problem with the store limiting the number of boxes that I purchased.

I looked up the best states for retirees from a tax standpoint and found the following: https://www.kiplinger.com/tool/retirement/T055-S001-state-by-state-guide-to-taxes-on-retirees/index.php

Now there are all kinds of rankings for the best and worst states for retirees based on various metrics, such as climate, health care, cost of living, etc. so you might want to google that and see how the states compare.

Since you have a sister in AZ, that is certainly one place to consider. Hope this helps.

If your husband was in the service you can try getting supplies from them. I told a friend to try and the VA gave her diapers, medicine and home visits even though he never was diagnosed and getting a disability check from them.

If you live in New York there is a program called Community Medicade which gives supplies. The person is not on full Meicade and only gets supplies. Hope this helps. Peggy

Find the local Office on Aging in your county and talk with social workers who are trained to handle these issues. There is help out there - but it takes determination and effort to find the right people for answers. Also contact AARP - American Association for Retired People. They can provide help for you. In the meantime, can you seek the help of a therapist to support you and give you strength. I pray for you.