Hello, brief background: H and his 2 siblings have an ailing mother, who has been in poor health and out of work for nearly a decade. She is early 60s, receives an income from a pension and is under the pension's health insurance. She owns her home but has an equity loan on it. Due to depression, Parkinsons and Diabetes she is not capable of caring for herself. She falls constantly with nearly weekly trips to the hospital, as of late the hospital visits are followed by a stay at a nursing facility for PT work.
Younger sibling (YS) is the primary caregiver, taking her to appointments, feeding her, cleaning her waste pail, etc. She does not receive an income from this.
About 5 years ago, H tried to convince siblings to create an estate and move the assets to it, no one wanted to; they weren't prepared for those conversations then (at the time, she was often sickly but not incapable). Now, with the situation worsening and YS not being able to be the primary caretake for much longer, everyone is much more motivated (except MIL). It is starting to affect YS mental health and well being. They have a social worker through the local elder care services but has not been much help and is very hard to get a hold of.
No one knows where to start. The end goal is to have MIL in some sort of assisted living facility, and ideally get YS some sort of funding for having provided care the last 2-3 years. Currently she has tried several times to apply for Medicaid (medicare? masshealth) and is denied because her pension payments + her assets are in too high a bracket. The social worker said YS could be getting paid as primary caregiver but then no information given on how - is this possible? Maybe with the added expense, MIL could qualify for aid?
If the house is sold, it all goes to the assisted living facility and then...? The children will not be on the hook for keeping her in care, they have been caring for her since they were preteens, so family assistance is out of the question.
Another possibility could be she buys a small garden condo, and then pay for some kind of daily care? Would that be cheaper? Could any profit from the house go to the YS and be protected should she eventually end up in a nursing home (maybe the condo can be purchased in YS' name?)
What are the options? Where do we start? It feels like everyone just keeps going in circles trying to get the wheels spinning but hospital visits and nursing home stays seem to always derail the focus. Really appreciate any help or guidance, it's not something either of us has had to face, and being early 30s, most friends have not had to either, we don't know where else to turn.
Anyway, all of you as a family will need to discuss all of this with a GOOD Family Law attorney. Together, the decision of who will be in charge will be, the fees this person will be able to receive. This person will become Guardian/conservator. Even though this person will be in charge does not mean everyone will not have a say.
The attorney will also be able to help direct with the type of care, agencies etc to help.
With the way things read, everyone is still afraid to face the future.
I'm the Guardian/Conservator for our Mother. I had to start without knowing what had gone on the prior 5 yrs as I live out of State. Our Mom had us face these situations when we were kids as family members and family friends were dying or needed the help.
I took these lessons to heart because it would eventually come around. I always told Mom I'd be there for her.
1. I make sure she is taken care of the best that is available for her, which she is in a wonderful assisted living home
2. I take care of her investments and finances
3. I take care of her property
4. I make all of the medical decisions
5. My siblings are just waiting for the expiration date
Everything I do is per my Court appointment. I keep my siblings involved yet far enough away that I won't have any unnecessary issues. I have had to go so far as to start divorce proceedings to keep step-siblings out of my business and hands off Mom's sole/separate property/money....they stole over $30.000 and trying for more.
It's not going to fun. People are not going to be happy with decisions made.
Iit's called LIFE and we all have to participate no matter. It starts the day one is born.
Start with a very good Family law attorney
Copy & paste this website to your browser. It has information about Care Needs, Care Options, How to Choose, Plan & Prepare, and other resources.
According to the website,
"There may be a time when you or someone you love will not be able to care for themselves. Care Conversations™ helps you have the honest and productive discussions needed to plan and prepare for the future. Whether you’re seeking care for yourself, or for a loved one such as a spouse, parent or sibling, Care Conversations™ connects you with advice from long term care professionals to help you every step of the way. Worry less about tomorrow. Start a conversation today."
There is so much information on this website that I can not even begin to list all of it. Go to "Care Conversations" website and see what fits your situation and what does not. Good Luck.
One of the experts on this forum, K. Gabriel Heiser has a book on the maze that is NH & Medicaid, “Medicaid Secrets: how to protect your family”. Most libraries have it, but you can order it online. There’s a couple of additions. Provides a detailed overview that is easily understood.
So how old is YS? And has YS in the past had any work history? So does she have any quarters reporting for her own future Social Security? I’m gonna bet she’s built up very little for her future & these years of working as mom’s caregiver for free means zero into SS. She can go to the SSA site to see where she stands in her future SS. Yes it’s good you are looking into this now. Her building into her SS now will be mucho importante in 20 years. Really, the only way around this is that she seriously starts adding work income to her SS ASAP for the next 10-20 yrs; or marries someone who has had higher Salary at SS max so she can file for spousal benefits when she turns 62.
The SW can’t give you specific info as it’s treading into legal advice which they cannot do. But here on this forum, we can give you our unvarnished opinions or experiences.....
Mom can do a caregiver agreement between her & YS. Realistically you have an elder law atty set this up so that it’s all ok for mom’s future application for LTC Medicaid and keeps everyone legit for reporting and taxes. Yes it will be taxable income for YS, no way around that. Mom has monthly income and that income less whatever she must have to pay her living & property costs can be paid to YS for caregiving. It’s done with FICA and IRS & state tax filing, so it’s all above board. YS can’t bill for past work, but I’d try to get this set up this month (June) so that it starts July and so she has 1/2 yr of reportable income. Caregiving rates kinda based on what your community standards for paying caregivers are.... so you could contact a couple of companies to see what they would charge for coming 4 -5 days a week to deal with mom. Gather up mom’s info and set an apt with atty. ASAP. This site has a link for elder law atty at the bottom of the page btw.
I’m concerned abt the Heloc, when will that be paid off?
And how much of a debt into her income is it? Is it crazy interest?
I ask cause mom cannot do anything creative with her home - like placing into a Trust, or transferring to YS, or even selling it - until the Heloc is repaid & release of its lien filed. If it’s manageable and the siblings want to (excluding YS) paying off the heloc may be the best gift for your mom from you all.
Also try to get the needs assessment from her last 2 hospitalizations and the discharge report with the rehab orders sent to the NH. If she is falling repeatedly weekly, has diabetes and Parkinson’s, she may not meet the criteria to live in AL. She may need a NH. The cost diffis pretty huge. It may be that IF YS with family help can have mom at home another couple of years, pay off that heloc, have a YS getting paid, it may have things so that she goes into a NH like 2022 & onto LTC Medicaid with YS somewhat with a nest $$ egg so that she can afford to stay & live in the home (which is now debt free since heloc paid) and get title transferred to her via Medicaid caregiver exemption. To me, unless you’re really savvy, doing all this is not ever a DIY but done via the elder law atty. That relationship will be beyond setting up YS caregiver contract to go to dealing with Medicaid application and then exemption to whatever Estate Recovery/ MERP does in your state.
Your mom is awfully young, she could easily have another couple of decades so you want to stat planning now. Best of luck!
Yes, MIL is only early 60s. She has been in ailing health for as long as I've known my H and had to retire early due to being out 80% of the year, getting progressively worse over the last year or so with more frequent hospital visits and rehab/nursing home stays.
YS is young, 27, and has only ever had a part time job, too much work to care for MIL now that she cannot work full time, so all valid points that she is falling very behind in setting herself up for future success in retirement.
Very very good info about the HELOC and the restrictions it places on being able to do anything with it. All I know is it was $50k taken out 5-6 years ago. We do not know much about any of her other debt (ie, she has a 2018 car but not sure how it's paid for or if there's a loan). So it's clear they all need a better picture of her current financial standings.
Thank you again, so much! This is so helpful.
Really find atty to set up caregiving salary for a July - Dec. If MIL really does not have disposable income to Pay YS, I’d actually suggest mil draw from the line of credit from that HELOC to pay YS whatever atty deems is the max amt ok for in home caregivers for the balance of this year. YS has got to have a $ nest egg to end the yr 2019 with imho & start on SSA credits..
Then in 2020 you do whatever best to 86 that HELOC $ loaned out. I’d suggest she does NOT cancel the HELOC per se but pays off the loan leaving the heloc still open & available for mil just in case there’s an emergency. She likely cannot get a new heloc now if not working and major health issues. The heloc stays open as a line of credit with no $ out, just in case big emergency. Comprende?
Get a handle on just what mil owes. Put on your best Nancy Drew or Veronica Mars and get a couple of binders going for household & another for medical & another for auto & property costs (taxes, insurance). Does the income / assets actually work for what their expenses are? Hopefully the #’s work. Take to atty meeting.
Also contact the Parkinsons association for caregivers support group for YS & family to be a part of. There’s a wealth of true experience there & you may find folks who will volunteer time for YS & MIL as their family member has passed and are at loose ends with time.