Questions about best next steps for retiring mother in law with MS. Are there any errors in our thought process?

if it gets worst then she can look in to other options

i think she should still try and work as long as she can it helps to be active

Imho, since she plans to retire early, she won't be eligible for Medicare until that time that she reaches Medicare eligibility age. Also her SS payment will be less than if she waits to file at normal retirement age. Prayers sent.

My feelings are this - it is obvious you care about her but I would think very hard and long about getting involved with her daily care which, as time goes on will get more demanding and harder. You are both young and no doubt have goals and dreams for the future - you won't get to see them if you have to take care of her. I would enlist the help of an eldercare attorney for professional advice. I think that perhaps in her case, and your ages, the best advice would be to place her into an assisted living facility which is not at the high level nursing home stage. She will adapt and be cared for. Some day when the money runs out, as long as she used it for her care, she would be eligible for Medicaid which would pay her expenses. You can look after her and care for her but at a distance - don't let her live with you - you will be sorry down the road. YOU have a life to live and deserve to do so.

If she really doesn't have much in the way of finances, home health care (as she needs it) will use that up pretty quickly. Medicaid will only kick in when she has spent down her money to about $2000 in the bank. Depending on her retirement income (that she can start drawing at age 62) or disability payments if she is approved for disability before age 62, will determine eligibility for a Medicaid bed. Medicaid and Medicare do not pay for assisted living - they pay for nursing home beds. Mom's assets (savings, sale of house) will be better spent if used for in home health assistance.

Since you already have a two family house, I would focus on that. Let's say you move her into an apartment. She begins to fail just ever so slightly. You/your wife will have to start splitting time between your own house and her apt in order to help her out. That gets old very quickly. Would work out the same if you purchased a house to rent to her or let her live there rent free. A two family home is ideal. She lives independently as long as she can with very easy access to you. Anyone in your family can check in on her during the day, share a meal with her, etc without having to drive to her location...and those drives can increase over time.

I would contact an elderly attorney if you plan to charge her rent at the two family home so that everything is document and above board. Medicaid looks back 5 years at her expenses. Without a legal contract, they could consider money she gave you as gifts and it would penalize her from getting a Medicaid bed at a time she really may need one. Whatever you charge in rent on the contact will need to be reported as income when you do your taxes. So consider that, too.

Use her house sale money to handicap proof the two family house. Widen doors, especially the bathroom so that a walker or wheelchair can get in (amazing how many bathrooms have skinny doors). Get a wheel chair and sit in it yourself and see which rooms are the easiest to get in/out of, straight shots to inside of room w/out a lot of turns. Also from sitting in that chair - where would you put a bed, dresser, nightstand, potty chair if you had to. I highly recommend a walk in shower with very minimal lip on outer edge so shower can be accessed as easily as possible. I left the tub in my mom's house and installed a lift chair that she sits on from outside the tub, lifts her up, and lowers her all the way to bottom of tub so she can take real baths - best money I ever spent. (spraying someone off while they sit on a shower chair is a wet job and person on chair is cold all the time. I ordered this lift chair and installed it myself while someone just held it still/straight while I secured it to floor and ceiling. It's called Probath Chair lift. Private msg me if you want a phone number to call the person who manages the mfg of them now. ( I shoutout this chair from the rooftops!!)

Then use her monthly income to pay for in home health care and increase hours as needed. If you get her started off with little things like someone (not you) come in to dust/vacuum weekly in the beginning she will be used to having hired help. Then when you/wife want to get out of town, you will feel ok about leaving her and she will be ok in the care of hired help. Maintain that arrangement as long as you can to avoid becoming 24/7 caregiver and wearing yourselves out. Again if you or relative interested in being paid to do things for her, get elder atty to create the contract, issue tax documents at the end of the year, and the 'employee' pays taxes on earnings. -- You do NOT want to deal with a penalty period when she will need 24 hr nursing care the most).

So nice to see someone getting into the details BEFORE an emergency happens and you end up just throwing darts at a wall hoping to pop a balloon with answers. Bottom line - move once, save as much of her money to be used as her needs increase, get her used to outsiders helping her.

My great aunt lived 4 decades with MS and she said staying active was the best way to keep the disease in check. She was an RN until she was forced to retire at 70 years old. She l8ved alone until she was 85 and remained active until then. She only went into a wheelchair when she entered a care facility. And no, she shouldn't have been using one any sooner, she did great with her walker.

Just curious why you think that you should be telling your mother in law what she needs to do with her life?

She is a grown woman and should be allowed to make her own choices and not feel like she has to comply with a son in laws expectations. Let her live until she can't anymore.

Hi, I don't have a lot of experience with much of the financial and SS benefits side of the picture, but as a healthcare provider who has worked with MS patients, planning ahead for handicapped accessible apartment NOW is a very good idea. Depending on the sub-type of MS, the disease can progress consistently, or can relapse and remit with each relapse frequently resulting in a lower functional baseline. So, sometimes things can change suddenly (after an acute episode) that would affect independence and increase the need for services and assistance. I wouldn't rule out handicapped accessible senior housing because of covid as someone with MS would likely qualify for earlier vaccination due to an underlying medical condition (but of course, run this by her doctor). Many senior housing arrangements have a case worker assigned to help with basic issues that come up with residents. If there might be a need to go on Medicaid at some point (sounds possible as she is still young), you would be wise to get very clear guidance on how to spend down her assets in order to qualify (and not make an error in the financials that would make her ineligible). Maybe some people on the forum might have some suggestions on who to consult for this (Elder law attorney? Social Worker? Geriatric Care Manager?). Joining support groups (a lot of stuff is happening on ZOOM) can help with information sharing and support from those who are tackling the same issues and might give some valuable advice and leads. You are great to be thinking ahead. She's lucky to have your level-headed support. Wishing you the best!

I have not ready all these replies but what caught my eye is your assumption that she will quality for SS disability. You really want to have her look into all her options. If she qualifies for SSDI, it does convert to regular social security when she reaches full retirement age. If she does not initially qualify, she might just take early social security at age 62 but it would be better if she can wait as her payments will increase 8% each year until she gets to full retirement age. If she has short and long term disability at work, she may not qualify if she cannot do her job; fear of Covid, although real, might not be enough to qualify. If she does get long term disability, I don't think she can get both that and SSDI; there may be an offset. You can really get into trouble making "assumptions" about how much she will get to live on so please make sure she considers all the options. She has a little money and will have to spend that all down to later qualify for Medicaid. Your idea about an apartment is probably better than a house. If she has a house, you will eventually be paying for maintenance etc or doing it yourself if she becomes unable to do that.

You can get some of this information on line at Social Security website but you might want to meet with her and a elder care attorney who can advise you of what is best now with an eye for later. You are asking the right questions, I think. What does she want to do know and how does she envision the future? Those are questions you should also ask; you say you talked her into retiring; what does she want to do. She also needs to have her POA and will updated so as not to make your lives more complicated later as well; the attorney can help with that too.

Legal and Financial Arrangements
Please take your MIL to a family practice lawyer, She should have powers of attorney drawn up for medical and financial. Preferably, she should name either you or your wife to manage these affairs if she becomes mentally incompetent to manage her affairs. Also have a will drawn up with one of you to be the executor. You'll need this to settle her affairs after she passes. Talk to your MIL about advanced directives and what kinds of medical treatment she wants if she can't make decisions: CPR, ventilators, artificial means to deliver hydration and nutrition... Have a document drawn up that outlines whatever she says she wants and does not want. Keep a brightly colored folder with all her documents in it: medical/surgical history, current medications and allergies, powers of attorney, advanced directive, doctors information, pharmacy, insurance information...

Staged Living Facility
It might be a good idea to look for a place that has staged living: where she can have an "independent apartment" with amenities like dining facility and recreation, then it phases to "assisted living" where she can have help, and finally phases to "total care" when she will need somebody round the clock to care for her. Talk with any facilities about the types of payment they accept, You will want a place that will take Medicaid and Medicare, the place gets bonus points if their social workers will help file the necessary paperwork.

Another option - Granny Cottage
My mom currently can live independently at 77 in her 2 bedroom condo, I expect in the next couple of years, I will help her with cleaning it and running errands since her eyesight is going and she is a little off at times. Rather than having a sitter for her, we plan on buying a home with enough space to put a small "granny cabin" in the back. Basically, it will be a 2 bedroom place with an everything room - kitchen, dining table, and sitting area - and a smallish yard. When my mom needs to live there permanently, she'll pay "rent" to cover utilities, taxes, and may mortgage as long as she maintains enough in the bank to cover for future hospitalizations. If she can't pay, she'll stay for free. Look online and in your community, there are mobile homes that are set up for this type of living arrangement.

There are retirement communities with varying levels of support. For example a person might start in their own condo with minimal services provided like cleaning. As they need more help it becomes more of an assisted living situation and there is a traditional nursing home setup in the complex. Shared recreational facilities like a wood shop, sewing and crafting area, are available. Rossmoor in Walnut Creek CA is such a place - not suggesting them as an option but as an example of what to look for.

Also...there is extended unemployment support available now, and if your mom resigned her position it might affect eligibility

Good answers here. You are smart to be thinking ahead but don’t be in too big a rush. I suggest you take some time to research and understand the different levels of care facilities in your area, the fees involved, and the types of care they provide.

Senior apartments, especially fixed-income ones, can have very long waiting lists. It might be proactive to get your MIL on the lists now. My Mom was told 3-5 years!

Assisted Living facilities often do not accept Medicaid waivers unless the person has been a resident for 2 years while most Nursing Homes are required, by law, to have a certain number of beds reserved for Medicaid patients.

Catholic Family Services (You don’t have to be Catholic) and A Place For Mom were a big help to me in figuring out finances and locating housing options for both rehab and placement. APFM is paid by senior facilities to recommend them so do some independent research too.

Medicare has a section on their website that rates Nursing Homes but not AL. Spend some time looking thru site this to see what factors are important, what the ratings mean, etc. so you can make your own list of what is important to your MIL.

And lastly do tours if possible, ask friends and family for recommendations, check if she has a religious affiliation that might give advice.

Oh yes, if her deceased husband was a veteran who served in a time of a war she might be eligible for an Aid and Attendence pension, Check with the VA.

Thank you everyone for your responses thus far. With so many I can't reply to them all, but have read them and appreciate the advice. We will definitely try to sit down with an elder care attorney and ask him appropriate questions.

And, yes she is absolutely on board with this plan.. My wife is her only child and we're planning to start our own family soon, she is excited to be close by and be a part of it. Hopefully it all works out as good as it can!

Be aware that what MIL gets SS wise at 62 is only 75% of what she would get at 66 which is 100%. She cannot get Medicare until 65. If she wants to get SS disability, it has to be gotten before 65. It does not happen overnight. She may be turned down the first time. It can take a year or more. You need a lawyer versed in Social Security Disability. He cannot charge you for his services. You receive a retro payment from the time you apply once ur approved. With my nephew he got 5k in hand and that was after SS paid the lawyer his 15% of the gross. At that time the Lawyer couldn't receive more than 6k. Now its 25% and I am not sure of the cap. If she receives SSD she will get Medicare. Medicaid is an income thing so she may not be able to get that with the savings she has. But u can check that out in your State. If like my cousin, her Med cost are out there so figure that in. A friend of my daughter pays thousands for a yearly shot she gets. She is in debt.

My cousin was diagnosed with MS at 50. She was an RN at the time. She was told that the sooner she applied for SSD the better. The longer she worked the more likely Social Security would not approve her because she "had" worked with MS, why can't see now mentality. This "was" 30 yrs ago. Things change.

The house should be sold for Market Value. The proceeds being put aside for her care. Medicaid does not allow big amounts of money being given away. Nor do they allow an addition to a childs house or like me, I remodeled a bathroom for my Mom when she lived with me. I could not recoup that from the sale of her house if it had sold while she was on Medicaid. Medicaid looks at it as an approvement I get the advantage of if I sell.

Now, selling the house. In my State, at one time, you could sell property one time after the age of 58 and not pay Capital Gains tax if u don't by property within two years or at all. This is something that you can discuss with a lawyer. Which I think is a good idea to consult with.

I would not have her buy another home. Even though its an exempt asset when applying for Medicaid, MIL once in a NH on Medicaid will not have the money for upkeep. Her SS and any pension will go towards her care. There is more to this but Moms house was my Albatross and I so wish I had talked her into selling when my Dad died. Then all I would have had to deal with was cleaning out an apartment and being able to walk away,

You've gotten great advice here; and eldercare attorney who is certified and who understands Medicaid in your state is key.

I am going to move on to the medical side of things. MS frequently causes emotional lability as it progresses. Get a good geriatric psychiatrist on MIL's team as soon as you can and get one close by when she moves closer to you.

Good luck and hope you will stick around to let us know how you and MIL are doing.

I second the advice to consult with an elder law specialist, they will be able to see any potential pitfalls and may have some good ideas about alternate plans; it would be money well spent.

In NY, (lived there until 5 years ago), there are many services- some not available in other states.

-Centers for Independent Living. These are not for profits that help people with disabilities. A wealth of information and help with services and education. My husband used to run one.

-County Offices for the Aging will come out and do a needs assessment. In the county we were from, they would be able to get you a Care Manager to help with your questions.

-The ARC may have some ideas for you. The one near us may have been only for people with Intellectual Disabilites- I can’t remember. But I do know that they have Social Workers with knowledge about local resources.

-Spend a bit of time each day here on the forum. You will find info on so many topics related to care giving.

Best Wishes.

Good for you to not only be thinking this far ahead, but vetting it with seasoned caregivers.

Since your MIL has humble finances it is of utmost importance that she, you and your wife all understand the importance of being able to qualify for Medicaid. This is why you 3 must seek the professional advice of an elder law attorney/estate planner who knows Medicaid. Many Americans are responsible and have saved all their lives, but the cost of care and the increased lifespan of people is outstripping their savings. In the app process there is a "look back" period. In my state (MN) it is 5 years. In other states it is 2.5 but you need to know what it is in NY. She cannot make any transactions of cash or property or assets that may look like "gifting" (and Medicaid gets to say what "gifting" is). If during the app process they find transactions they don't like, this can delay or disqualify your MIL at a time when she may really need it -- meaning, she will have a gap in time without being able to afford her care. Caregiving for someone who cannot carry out ADLs (activities for daily living) can be all-consuming, exhausting and financially draining -- even for someone you dearly love. There is NOT much other "help" (care of financial) to be found (i.e. govt programs or charities) as many burned out caregivers have come to find the hard way. Rules about Medicaid can differ from state to state: in some states it will cover AL and others not. So, your MIL must qualify to medically need a facility. This is a discussion with both her physician(s) and the admins of any facility she is applying to. In most cases being a Medicaid recipient means she will share a room in a facility, but she will get the same level of attention and access to activities. So, when researching facilities your MIL MUST ask if they accept Medicaid. If they don't, move on. Also best to only consider facilities that have a continuum of care meaning: they have IL, AL, MC and LTC all in one connected campus (even ask about hospice).

I think moving her as close to you as possible is a smart idea. My mother lives next door to us. She gets to be near me, her only child, her 3 grandsons, and now her 2 great-grandchildren often. This is a wonderful blessing and she likes to help and be "useful". Not sure if you now or ever will have children, but living in close proximity to elders also teaches kids much they won't learn out in the world.

Your MIL must have all her legal protections in place and she must understand what it means. This is the other reason to see the elder law attorney. She must give durable PoA to her daughter (or anyone she chooses to trust). I recommend your wife if she's going to live closest to her). She must understand when the PoA kicks in. The PoA must understand the duties and responsibilities. MIL should create a Living Will and a Last Will (so that if she does have possessions at the time of her death, the probate process can be hastened or avoided).

I fully agree with those who have said that MIL living with you "says easy but does hard". There is a human tendency to romanticize caregiving for those we love. You and your wife must educate yourselves because in the vast majority of cases it is not how it plays out. Just read the many many posts on this forum under the topic of Burnout. It will be good for MIL to be as fully in charge of her life for as long as possible and then she transitions to a care facility that she chooses in advance. A good facility will have more social interaction, activities, good medical care, etc. You and your wife will have peace of mind and not be burned out. My MIL is in a fantastic place (as a Medicaid recipient) that is a faith-based organization. They and the staff see the caregiving as a mission, so they are not so focused on profit. And, they recently moved her into a private room.

I wish you all the best and hope that MIL is as interested in planning for her future as you two are.

As to real estate changes, buying and selling I would take the advice of a good elder law attorney as to the repercussions. You do know, if she pays rent that is declarable income for you, and meticulous records must be kept on her own expenditures to make certain they don't exceed rules for medicaid in your area should she need care in future. MS is unpredictable at best as to when and how it progresses. I would definitely, after you make plans, run it all by an Elder Law Attorney in your area to see if there is something you and we and anyone else missed that must be known. When things are done wrong they cannot be taken back. It sounds like you three are really thinking about so, so my congratulations. I hope Igloo is about to give some opinion about house sale, and perhaps Mstrbill.
Your Mom may like making an account here as well. Welcome to the Forum.

First, congrats on working to find her independent living and NOT moving her in with you. This site is filled with caretakers suffering from burnout.

If you buy a house for her to live in, would you seriously be able to carry the cost of that if she can't pay rent? If she's going to be on disability SS, she will have some income, but probably not enough for long term rent. Make sure you set things up properly so that the money she pays you for rent will not be considered a gift to you if she ever needs to file for medicaid for a nursing home when her disease progresses. I don't know how to tell you how to do that so talk to an accountant or someone that knows how to do it correctly.

Encourage your mom to stay as active and independent as possible. Set reasonable boundaries NOW. Do not take on more and more. Help her find helpers to do for her what she can't do for herself. Before you get in a habit of doing too much. Much easier to set the tone in the beginning.

Is mom on board with selling and moving close to you? Seems like a good idea.

If you have siblings, don't count on them for anything and don't waste your energy resenting their lack of assistance. They are free to make their decisions too. Even if you disagree with them.

Best of luck. She's lucky to have you helping her get settled with an eye to the future.