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.
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.
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!"
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...
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
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.
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.
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.
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!
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.
They will take you in and help, with everything and anything finances and loving care to counciling.
Buying things at a thrift store is not the same as skipping a meal.
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.
Also, some drug companies will assist with medicines.
Elder Attorney is a good idea!
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!
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!
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.