Care after a stroke?

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Gnu262 Asked December 2019

Care after a stroke?

From rehabilitation center to ‘skilled’ nursing facility; what next?

My wife is disabled one arm paralyzed and wheelchair bound; needing the care that I cannot give her at home! She may also be having dental problems with pain that I cannot tell except strong breath.

Will it be assisted living or nursing home ?

Assisted Living Care Decisions Rehabilitation Center Stroke

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score 1 · Answer 1

Gnu262;

"Thanks for sharing your experience.
I should be looking into Medicaid while spending down to poverty."

1) You should be consulting with an EC atty before "spending down."
2) Spend down ONLY applies to the patient, NOT the spouse.
3) Spend down shouldn't just be spending on whatever, it should be used to cover the facility, however much she gets from SS (and if she worked/has a pension.)
4) The home, car, and savings, etc would be considered "shared", but in general the home, car and AT LEAST half (possibly more) of the savings you get to keep for your expenses. This is where EC atty can help!
5) Do have a good talk with the rehab people, to find out what your wife's needs are/will be.

You can find EC atty through the following link, entering your zip code. Call several, find those who might give a free initial consult, make a list of questions, take notes AND ask for a estimate of their cost for help. It won't be cheap, but it is the best way to ensure you get what you both need. YOU should not have to impoverish yourself to get the needed help for your wife.
https://www.naela.org

From reading on other threads, if your wife qualifies for NH, check those in your area and find the ones that accept Medicaid, in the event that she qualifies. My understanding is that she can be accepted PENDING Medicaid (application needs to be done first.) If the EC atty/recommendations from rehab point to needing NH, she will most likely be accepted - they just have to wait for back payment (but this is where the "spend down" comes into play - EC atty can guide you, but any income that is hers would be used while waiting for Medicaid decision.)

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score 2 · Answer 2

After experience with both for profit and not for profit facilities I have been much happier with the not for profit facility. Of course this can differ in different areas of the country but if possible I would suggest visiting both if available and also in general visiting different facilities.

You should take into consideration the rehab area. Regarding dental issues you most likely need to take her to the office of one. A basic cleaning may be the most you can hope for initially. It might be advisable to have her pre medicate with an antibiotic for that. My mother always does due to having had hip and knee replacements. I myself had the nightmare of experiences from an endodontist not prescribing antibiotics after a root canal and then starting with a weak one but that is a whole different story.

I think you are looking at NH rather than AL facilities with her needs you describe. I wish you the best with this search and decision. Difficult as this may be the right place may offer you some reassurance.

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score 2 · Answer 3

After my mother had a devastating stroke she was transferred from hospital to rehab. After weeks of therapy and despite her best efforts there was no improvement and we knew her care needs were far beyond what could be provided at home. She lived out her life in a nursing home. My dad was her greatest caregiver and the rest of us helped too in varying amounts. It didn’t take long for her to need Medicaid. The business manager of the nursing home was very familiar with the process and walked us through it, no charge. Other than selling a car, my dad’s life didn’t change. The nursing home got my mom’s SS and he kept his, along with his other retirement income. There was no hiding anything and nothing illegal. We became our mother’s advocates in her new situation. She was mentally fine in a completely broken body. We brought her to her home every few months, out for car rides, to see doctors she knew, and to some fun things like events of her grandchildren. It was team effort as she couldn’t help at all in transferring. I wish you the best with your wife, sometimes the best thing you can do is just hold her hand. This is a huge life change for you both, check in here anytime you have a question

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Thanks for sharing your experience.
I should be looking into Medicaid while spending down to poverty.

(0)

score 1 · Answer 4

Hire an elder law attorney.

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score 3 · Answer 5

Talk to the Social Worker at the facility your wife is currently at. They know the laws and the local resources. They can help you with creating a plan of care for "after".

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score 3 · Answer 6

Usually if a person requires a two person assist, it’s a skilled care facility. Assisted living for the most part is a one person assist. Hope this helps.

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score 4 · Answer 7

I know you are hearing this from others on here but I'm throwing it in too because I did it and that is to get a consultation with an ELDER Law attorney. It was the best thing I ever did in dealing with that for my mother. It may cost you approximately $300.00 for one hour. Yes, that sounds high but it was worth every single penny. He saved me from getting myself into a mess with the spend down to Medicaid and issues dealing with my mother's financial affairs (her money). There will eventually be two government agencies you will answer to at some point. Medicare/Medicaid, and Social Security. They both will audit for any shifting of monies and Social Security will audit to be sure her check is used for her care and if she's getting the use out of her money and that a family member is not spending it. So make a list of questions, and get an appointment. I ended up in the lawyer's office 4 times over 4 years my Mom was in the nursing home. Don't go on hearsay from anybody including some suggestions on here. Get professional legal advice. Protect yourself from the start.

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score 2 · Answer 8

Spousal refusal is legal in NYS and in Florida; again, the OP does not need to fear that he needs to spend down to poverty levels in order to get his wife the care she needs.

It does not profit Medicaid to impoverish the Community Spouse who then becomes an additional burden on the State.

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score 1 · Answer 9

It is okay, and it is legal.

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Another note - when we consulted with EC atty for mom when dad needed services, they set everything up, BUT dad's pension and I believe also his SS had to be paid to the facility, with Medicaid covering the remainder. Other than getting mom to the EC atty and helping with that (until she lit into me about something, which is when I butted out), I have no idea what happened or how much Medicaid might have covered.

Since then, we revisited the EC atty for mom. Although I still would have moved her funds to the trust we set up, it wasn't until later that the EC atty said to contact him if/when she needed NH (she's in self-pay non-profit MC for now.) He also told me I should not be paying trust funds needed into her account or direct paying the facility, however, moving those funds to my account would incur several nasty results:
1) the IRS (and possibly the state) would consider this income to ME, and I would have to pay taxes on it and
2) turns out that SS/Medicare also has some kind of look back and can charge the person MORE money for Medicare. When I received notice of the big increase resulting in less SS money, I contacted them. They look at income, and they consider the trust money income, (starts at 2 years I was told by them, and mom just finished year 3 in the MC facility.) I questioned that, saying well, if the money was kept in her account/CDS, then it wouldn't be income, why is it now? Same money, just held in a different place!

The only good news was that MC is considered a medical necessity, so it is fully deductible (NH would be as well, only AL is not considered necessity, but some care can be deducted.) Result is that she is now at a no-tax status. This means there are more funds available for covering the cost of her care.

Personally, I find the "method" wrong, and until her funds are depleted, even if she had to move to a NH, I would NOT apply for Medicaid. There is no spouse at this point, so the only benefit is that her remaining funds could be left to us. Sorry, but I feel HER funds should be used for HER benefit, not ours and certainly NOT to use taxpayer money.

(3)

score 1 · Answer 10

You need to see an elder law attorney. They can transfer all assets solely into your name and then file a refusal to support spouse and Medicaid will pay for nursing home. You will get to keep your assets. At least, that's how it works in Florida.

Helpful Answer (1)

Thats not okay, if there is money this should be handled so that she is paying for her own care, as per the rules.

People cheating the system will cause it to go broke and then no one gets help.

(5)

score 4 · Answer 11

Can I encourage you to go to www.nelf.org and find a certified elder law attorney to help you navigate the financial end of getting your wife the care she needs.

As far as what that care looks like, ask the facility to do a needs assessment. Then ask them to help you find a facility that can provide the level of care that she requires.

I know that you feel completely overwhelmed and alone, but there are people available to help you navigate through all of this. Just ask.

One thing that I would recommend, when they start making noises about discharge do not let them just send her home. I found that they will say anything to get you to agree to take the patient home. This is an unsafe discharge because you can not take care of her at home, memorize that term "unsafe discharge" and repeat it until you get help finding your wife the care she needs.

I am sorry that your family is dealing with such a traumatic incident. You will find a way to live with your new normal.

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score 4 · Answer 12

Prior to discharge from the skilled nursing facility, I would request a meeting with her care team to discuss current level of functioning, home care coverage, current medications, medical equipment needed, and anything else related to her care. I would also have a conversation with her physician regarding diagnosis and prognosis. Whether assisted living or nursing home depends on the answers to the questions above AND her financial status. Most if not all assisted living do not have Medicaid coverage. Nursing homes do but any resources must be spent down first while completing a Medicaid application for financial assistance.
In regards to the dental issues prior to her discharge from the facility, I would ask for a dental consult to assess any dental issues.
Lastly, I would start this process by talking to the social worker of the facility.

Helpful Answer (4)

Pretty much what I would have suggested. One needs to be assessed and require skilled nursing care in order to require a NH. The rehab place should be doing assessments and discussing the results with OP and his wife. Her doctor(s) should also make recommendations.

Note that "resources must be spent down first" should be qualified with the PATIENT's resources need to be spent down (Medicaid will determine how much that might be) AND don't just spend willy-nilly on anything, use it to cover any costs in the care of the patient (aides or AL cost.) Giving away anything and/or frivolous spending could result in a penalty (delay in getting access to funds.)

Also, curious why no SS - others have questioned this as well. Gov't job? That should have a pension associated with it, although the various costs in her care already could be dipping into savings. So long as one has worked the required # of years in a non-gov't job, one should have SS. (Gov't jobs can be federal, state or local, in which generally you pay into a pension system and not SS.)

(0)

score 2 · Answer 13

Call your doctors office and ask if they can connect you with a social worker to come to assess her needs. They can help guide you.

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score 3 · Answer 14

Of course nursing home as limited assistance at the assisted living

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score 2 · Answer 15

The deal breaker for my dad leaving AL and needing skilled care was that he couldn’t transfer himself. He couldn’t bear any of his own weight. To use the toilet, or get in and out of bed. He needed a lift and a SCF had that. In my experience there is no more personal care in either place. You may still need to hire a personal companion to provide the care you may want her to have.
best wishes

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score 1 · Answer 16

To get the best answers, you should provide more detailed information about your situation on this forum.
Are you working? Are you and your spouse on Medicare and SS? Do you have family? Etc.

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score 3 · Answer 17

You need to get yourself to a certified Eldercare Attorney who can aid you in applying for Medicaid for your wife. You are the Community Spouse.

You will not be impoverished.

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Will definitely look into it ASAP - thanks

(1)

score 2 · Answer 18

Greetings all ,
for not having time to indulge but thanks to all for sharing thoughts and experience; I kick myself for self pity.
my wife had the stroke on Oct 21 thru Nov 14 was in ICU with all body functions failing . But she came out from critical condition and had been in rehab, Meanwhile my anxiety BP took me to Emergency twice . I am in no position to bring her home. Our Kaiser Permanente Medicare Advantage Plan allows some time in a post- acute care facility.
Down the line it is looking like spending savings down to poverty level for Medicaid. so be it.

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That is fairly recent and I hope she is medically stable now. Look for a facility that provides PT and OT at least 5 days a week so she can continue some rehab if she wishes. Assisted Living does not include therapy, unless you arrange for a Home Health Service to visit. Most AL places also do not provide equipment like wheelchairs while most NH do.

(1)

score 2 · Answer 19

When did the stroke happen?

Ask the SNF staff to show you how to help your wife clean her teeth. If there are any dental problems, rather than just hygiene having been overlooked lately, they should come to light then.

Is your wife's speech/communication badly affected by the stroke?

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Called aphasia ; she struggled for the wanted words to express her thought.
( I gather that patients can hear everything, intellect is retained and need a long time to come out of this )

(1)

score 2 · Answer 20

I would plan for a NH. I’m curious - when was her stroke? If she has been hospitalized then sent to rehab I am thinking 2 months ago?
The reason I ask is trying to establish what is baseline for her....can she swallow without aspirating for instance? Usually with time she will reach her maximum potential if she has not already.
When you have time, give her good oral hygiene. That strong smell may be pocketed food.
For your wife’s care, a NH will provide more support than an AL.
Good luck to you both.

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score 2 · Answer 21

So sorry to hear about your wife’s stroke. That’s tough. I am thinking she will be in a nursing home rather than assisted living but I really don’t know. Can you speak with a social worker to help you sort this out? Best wishes to you and your wife.

My daddy had a stroke. It’s interesting how different strokes can be depending on the circumstances.

Daddy had his after his heart surgery. He was actually in the hospital recovering from his bypass when it happened. He was in ICU.

After he was released from the hospital he did rehab. No paralysis. His stroke effected his speech so I took him to speech therapy three times a week.

He would mix up words. Once he told me to pick up a gallon of paint for mom. I called mom and she had told him to bring home a gallon of milk.

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score 1 · Answer 22

Why do you not get SS but you get Medicare. You have to work ten years at least to get both? If you were government, you get a pension and Medical.

An AL may not be able to care for your wife. Plus its private pay.

LTC can be paid by Medicaid. As a "Community Spouse" Medicaid will look at your finances and will split them. Your wifes split would need to be spent down. You will not be made impoverished. This is just an overview. You will need to talk to Medicaid because each person has a different situation.

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Joann, not everyone pays in to social security. My husband will get Medicare at 65 but not social security. The OP may not even be getting medicare. His profile statement can be interpreted as they don’t get SS or Medicare.

(1)

score 0 · Answer 23

My mother just had a stroke, she was placed in AL, doing fine, but she is not wheelchair bound, she walks with a walker. Still having some therapy at the home.

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Thanks for sharing; I hope over time, my wife can do that too.

(1)

score 1 · Answer 24

Depends. Medicare, medicaid. Both are very expensive. Call.your Dept. of Aging, speak with her primary doctor, insurance company but Primary DOCTOR knows best.

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Care after a stroke?

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