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I’m 66 yo retired RN living in NYC, widowed once and remarried in 2008. My husband was diagnosed with MS in 2009. He also has DMll and is now on insulin. He has cognitive damage, short term memory loss, incontinance , and uses a wheelchair. I was diagnosed and treated for breast cancer in 2014. I’m also being treated for PTSD since 2016 and awaiting settlement or trial. I’ve been through multiple bouts of burnout over the last 10 years. I have scheduled a consultation with an “elder law attorney”. It’s overwhelming!! We have no family assistance. I’m IT! I imagine myself alone and impoverished as the surviving spouse. A frightening prospect.

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Although finances are an important consideration, mental, physical, and emotional stress of being a care-giver are also front and center. Basically, caregivers are trying to live two lives and it can be overwhelming.

I was researching this exact situation for a post for my senior's website and came across a novel idea I think just might work for some people who are stressed out from being caregivers. You can read about it here if you like.
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Thank you all for your suggestions. I do have Senior Community Center a short walk from me. Also, my husband has finally agreed to sell his car. (I had already taken the keys away, which he only noticed today). We now have only one vehicle which is fully paid. That’s one less parking spot to pay for and less on insurance.
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disgustedtoo Aug 2019
Baby steps!!! Glad to hear about him giving up the car - selling it brings in a little money, saving on insurance and parking is another win!! More baby steps as you can...

I certainly can relate to the fixed income issue. I only care for myself and my cats (I do all the non-hands-on work for mom, which does add up and gets progressively worse), but my place needed a lot of renovation when I bought it, got laid off and stuck between two houses! I was finally able to move forward on the other house and sell it, but finding good workers (I have most of the materials needed) who stick around is a different issue! At the moment, I am not even looking for anyone because the money issue has reached a point of soon to be negative - a few more months to get through (til April) when I can pay down a big chunk of the mortgage and use the remainder to hire people to do work. Tired of living in limbo! But, I made a plan, and then had to adjust it when something else failed (brakes on my plow jeep), but... baby steps... hopefully I can get this place done and clean up so I can try to enjoy some of my "golden years!"
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"I privately hire an aide for 6 hours a week to assist in his personal care and to watch my husband while I attend to chores, grocery shopping, etc."

Please check out:
https://www.medicare.gov/coverage/home-health-services

You would have to coordinate with his doctor and the agency (if you have privately hired, you might have to use an agency for the services that Medicare might cover.) This could fall under the "Part-time or intermittent home health aide services (personal hands-on care)" The agency we had hired mentioned this benefit, but because mom didn't need/refused any "personal hand-on-care", we had to private pay, so I don't know how it all works or if there is a limit to the coverage.

When you need to get out for errands, sanity, etc and need a "sitter", that you would still have to pay for, but if you can get some Medicare coverage for some of his personal care, it could save you some. The page referenced above even mentions that the agency "should tell you how much Medicare will pay. The agency should also tell you if any items or services they give you aren't covered by Medicare, and how much you'll have to pay for them." It can't hurt to explore this...
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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.
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Llamalover47 Jul 2019
Riley: I agree as I, too, had suggested their town's elder case worker and dedicated social worker could be of assistance. Good suggestion to contact AARP
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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
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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.
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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.
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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.
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worriedinCali Jul 2019
I think based on her response to me a few days ago, that the $500 includes paying a caregiver. Otherwise I was wondering the same thing about the cost of his supplies
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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.
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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.
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DEPENDS WHAT COUNTY YOU ARE IN BUT YOU CAN CALL DEPARTMENT OF HEALTH AND HUMAN SERVICES THEY WILL COME OUT AND HELP YOU.
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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.
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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!
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evitaV Jul 2019
I’m not yet facing financial ruin, and if I can help it, we won’t.
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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.
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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.
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worriedinCali Jul 2019
The OP is in NYC and cannot use the Access Florida system.
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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.
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evitaV Jul 2019
Thanks for your reply. And my husband IS challenging. But there is no family member near us, except my 98 yo MIL.
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I assume you have filed for disability?
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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.
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Shane1124 Jul 2019
Agree with NYDIL. NYC is very expensive. I too would reconsider living in the city & perhaps seek other living arrangements upstate.
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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.
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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.
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evitaV Jul 2019
I have a loving sister in Arizona, great neighbors, and a few close friends.
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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.
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evitaV Jul 2019
Nothing against Christ, but I am a Buddhist, and I attend services and other temple activities as I’m able.
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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.
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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.
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Karsten Jul 2019
that was a very uncalled for response. I cannot believe six people viewed it as helpful. While the money saving suggestions are not the total solution, anything helps. The reason people get into financial difficulties in some cases is because they don't see where they can cut corners and save.

Buying things at a thrift store is not the same as skipping a meal.
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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.
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Karsten Jul 2019
You are a smart lady. Many people are in tough situations and as taxpayers we are happy to help those in need, but also expect people to do what they can like you have been doing.
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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!
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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!
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Lymie61 Jul 2019
It sounds to me like she has a full time job at home in her retirement caring for her husband and I didn't read anything that led me to believe she wasn't saving for retirement "the past few decades" she's once divorced and married to this man for only 10 years nine of which his health has been failing, cut the poster a break and don't judge so harshly. Any idea how expensive it is to live in NYC?
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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!
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lucyinthesky Jul 2019
Check your local Vet's Club, Lions and Rotary...they sometimes lend out Durable Medical Equipment.
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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.
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evitaV Jul 2019
Thank you for your kind response. I do see a counselor who accepts my supplemental insurance. I have a consultation with the lawyer this week.
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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!
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evitaV Jul 2019
I was referring to the cost of hiring someone to shower and groom my husband 2x weekly. And thank you for your suggestions. The cost of supplies does add up, also.
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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.
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evitaV Jul 2019
Thank you for your response. I will look into SNAP
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