The Vine: April 15, 2015
My siblings and I are writing to ask you and the Nation for advice on fundraising for my parents.
Our poor mom suffered a hemorrhagic stroke last summer. After emergency surgery and 10 days in the hospital, she went to a rehab clinic, where she made good progress the first five days. Horribly, due to the clinic’s negligence, she fell out of bed on the sixth day, hit her forehead on the tile floor, and suffered a new, deeper bleed in her brain. The second brain injury severely set back her recovery. What was supposed to be a two-week stay at the rehab clinic turned into 5.5 months of hospitalization and rehab clinic incarceration. As a result, she now has a feeding tube, a catheter, and can’t walk on her own.
In early January, she returned home. But now she’s in caught in Medicare limbo — our dad is her caregiver, but he needs home-health assistance. Their state’s Medicare office is backlogged with cases. It takes up to eight weeks before patients are eligible for its subsidized program of care.
We, the children, are unable to provide caregiving ourselves. Two of us live out of state, and the one who lives nearby has a full-time job and cannot afford to resign. We have contributed thousands of dollars for medical supplies and bills. The out-of-state kids have flown back several times to help run interference with healthcare workers and government agencies. Our love for our parents, and each other, has grown stronger during this adversity. Unfortunately, our bank accounts are tapped out.
So, we started an online fundraiser to cover the cost of a caregiver while our parents wait to be deemed eligible for the government program. Thanks to some very kind donors, we raised enough money to pay for a caregiver for two weeks. But there are six weeks to go. We “only” need $8,000 now.
Are there other sources we can ask for financial assistance? Emergency grants we could apply to? What have Nation readers done to help pay for their elders’ health costs?
For the record, our parents downsized years ago and have since lived quietly in a tiny home on their Social Security checks. Both have health insurance (which does not cover caregiving expenses). They gave up smoking and drinking 40 years ago, and generally had healthy diets; our mom has been a health-food fanatic all her life. She didn’t deserve a stroke or a preventable fall. And no one deserves to battle Medicare mumbo-jumbo while they’re trying to heal.
Thank you.
How Do We Help Mom?
Tags: Ask The Readers health and beauty the fam
im not one in favor of suing generally, but sue the clinic. At the very least additional care should have been taken on by them in a good faith effort. Also, find a social worker at elder services to help you navigate the system, it is what they do. You’r dad will need respite care at the very least. Your parents bills are not your and your siblings responsibility. Payment and payment plans should be negotiated based on your parents’ resources. Don’t let those owed bully you. If your parents belong to a church/synagogue, contact the pastor/rabbi. They may have discretionary funds, may be connected to organizations who can provide social services or aid. Talk to state or local politicians to see if they can get your dad moved to the front of the insurance line.
I’m so sorry you are going through this.
Call their local elected officials! They’ll be the ones who’ll know if there are programs in their state or city that can help – there probably are!
Suing the original rehab clinic seems like a given, although that won’t help with short-term expenses. And make sure you’re keeping track of ALL your expenses, that includes all your travel costs, lost wages, and anything else that you’ve incurred solely because of the problems with the follow-up care.
How did you publicize the fundraising efforts online? Was it just a link circulated among friends and family? You should probably try to hit more people than that. Send it out far and wide on Facebook. Also, in the city where I grew up, the local newspaper had a columnist who would do an inspirational-type life and family column every week. There were often requests for assistance in there. Strangers can be strangely generous.
Or, a fundraising event could be something. Sometimes a restaurant will host fundraisers; I think they have deals where they will offer 10-20% of their takings for the night. Alternatively, you could get a restaurant to donate food to a fundraising party. You could get friends and family to offer services that people could bid on. Of course, these types of events take time and energy to plan, and those things you may not have. Maybe friends or former co-workers of your parents could help with something like that?
What a terrible situation. My condolences, and best wishes for you all.
My God, how awful! You and your siblings are good, strong people!
I’m not up on Medicaid, but is there any way to get an affordable lawyer or advocate for your parents if they don’t already have one? Elder law is a growing field and it sounds like having a legal person in your corner is going to be a godsend.
My condolences, OP. If your parents own their home outright, a reverse mortgage may be an option (but make sure it wouldn’t affect their ability to qualify for Medicare assistance). I would also check for any local senior centers in the area as they may have more knowledge on how to navigate the system and resources available. If there are areas where your parents could get other assistance (food pantry, utility expense relief), I know that certainly won’t cover the cost but could help close the gap.
Check out friendsofman.org. It doesn’t specify caregiver salary as an allowable expense, but it may qualify.
What Bo said. Sue.
The reverse mortgage is also worth considering in these circumstances.
Visit the BenefitsCheckUp website (https://www.benefitscheckup.org/) if you haven’t already. Even if it doesn’t help you find the money for home health care, it may help you find financial assistance with other costs which helps to free up money for the in-home care you mom needs.
I’m so, so sorry your family is going through this. As you know, “deserve” ain’t got nothin’ to do with it. Terrible things just smite people out of the blue, and as a society the U.S. does an appalling job dealing with this basic fact of life.
I’m so sorry you’re going through this.
My only thought was possibly contacting service clubs in the area, as well as any clubs, churches, social groups that your parents were a part of, to both publicise the fundraiser and to ask about any short term grants in the interim.
This can vary widely from one place to the next, but check if there’s a VNA that serves the area where your parents live. We used the local VNA with my grandmother and they were fantastic, even helping us deal with sorting out Medicare. I’m pretty sure they offer sliding-scale pricing, as well.
NY has an agency called the Office for the Aging. If your state has something similar, they will be your best resource. They typically employ an ombudsman to assist the elderly with various legal and care related issues as well, which sounds like it would be an excellent resource in this case.
So sorry this happened!
So sorry you’re having to go through this. The people who are supposed to make us better should NOT be the ones to make things worse.
Because of that angle, I say get the local TV networks on the case. Not sure where you are, but here in Chicago we have an investigative-reporter-slash-bull-terrior (Pam Zekman) who LIVES for these sorts of stories. Stick someone like her on their tails and see what happens.
Best of luck in an awful situation.
I am so sorry that you and your family are going through all of this. I’m sure you’re all at the end of your ropes.
I wish that I knew more helpful advice, but I would definitely contact every media outlet in their town – television especially – and try to get a reporter interested. They do these things on stations in Minneapolis all of the time and there is more often than not a follow-up talking about how many people helped; how much money was raised. This is the kind of story that I would think the news would love – lots of angles to draw people in.
re: my own typo … “terrior” … ha!
That’s what you get when you combine “bull terrier” with “holy terror” (which is what my father calls that particular investigative reporter…) Oops.
My Dad was sent home from a nursing home New Year’s Eve, with my Mom as his sole caregiver. She’s 83, he was 87. That would NOT work.
Contact your local Council on Aging. At least here they have grants available to pay for home care assistance. Ask also about respite care. I’m not in the same city, but contacted elected officials and anyone I could think of, and got one reply a few weeks after the crisis was over (in a bad way — Dad fell again, went back to the hospital, and was sent home with Hospice. We lost him in February).
I’m sorry y’all are all going through this!
I’m so sorry that your family is going through this. I can’t offer any better suggestions that what is listed above about the fundraising side of things. However, if you decide that you need legal assistance (either to navigate the health care bureaucracy or to engage in Medicare/estate planning or to pursue claims against the rehab facility), I recommend that you check with local law schools. Many have clinics staffed with law students (supervised by licensed attorneys) that provide low- or no-cost legal services in various areas for people who need them.
If either of your parents are veterans, contact the Veterans Administration. It’s possible that they have funds to help. I know that when my Dad was ill, the Vets took great care of him and then when Mom had to have Alzheimer’s care, the Vets gave her a monthly stipend as a widow of a veteran, which helped pay for her care. It can take a few months if your parents are qualified, but the stipend is retroactive to when you applied. At least it was a five years ago when we applied.
A reverse mortgage is only available if the homeowner is living in the house, which your parents are. I don’t know what happens to a reverse mortgage if your parents no longer live in the house. Reading the fine print on this would be a must, I would think.
Is it possible to take an equity loan from the house to help with medical bills? You said your parents are on a tight budget but I would explore this option if they own their house.
There is a company called Elderlife Financial Services, that we used as a bridge loan to covers costs until Mom’s house sold. It’s been a few years but I found them to be helpful.
One thing I found is very helpful is be persistent. A pleasant phone call to social services every week or so helps to keep your parents plight in the foreground rather than lost in the shuffle. And social services knows someone has your parents backs, so to speak.
Good luck. It’s a tough situation that you’re in.
Eldercare.gov is a fantastic website for finding local resources: http://eldercare.gov/Eldercare.NET/Public/Index.aspx.
While not religious myself, in the town where I live, there are a number of churches who regularly help out citizens (whether they are members of a particular church or not) — Churchy people can be very good sometimes –
As an almost-but-not-quite-lawyer, I just wanted to second the suggestion for student legal clinics run by a local law school. They can at least be a good resource for pointing you in the right direction, legally-speaking. So sorry this is happening to you and your family, OP.
Would you consider sharing your fundraising link here? The Nation is pretty good about helping its own; I imagine you might get some donations and also lots of people sharing the link. Maybe people would have suggestions about optimizing the text, too – I know that can make a big difference in how well an online campaign does.
You need an attorney immediately. I work for lawyers. We had a case very similar in general circumstances (a woman with a debilitating disease was allowed through negligence to fall and break a hip). You’re not doing it because of greed, you’re doing it because they had a job to do and they failed. Hopefully you can get a settlement that will help with the medical bills.
Be aware, however, that if you do take my advice, insurance companies have been known to pursue the settlement to cover the bills. You should absolutely seek legal advice, though.
I wish you all the best. I live with elderly parents. My mom is my dad’s caretaker. Although he’s not bedridden, he’s fragile, and it’s stressful going from day to day. It’s not easy. All good wishes to you.
Thank you, Nation. All excellent suggestions, and we’ll follow up on as many as possible. I wish I had thought to ask your advice when the fall occurred.
Since the time this letter was originally submitted, Mom is now in hospice at home. But her health has somewhat stabilized (!) and she no longer has the catheter, which is a minor miracle.
We are still trying to obtain Medicare assistance. Donors have generously paid for a caregiver through the end of April. Our reach has been limited, so we’d greatly appreciate others sharing the link (thanks Wehaf and Erin W): http://gfwd.at/1vm7pFH.
This horrific ordeal has been a terrible education in how the U.S. treats its elders, as The Other Katherine noted. If not fixed, the infrastructure will implode by the time the Baby Boomers need caregiving services.
Hugs to all of you who have been or are in my shoes — it’s a club no one wants to join (Lisa, Dayna, Mingles’ Mommy, Angharad — I’m so sorry). And thanks to everyone for the condolences. Your kind words mean a lot during this confusing, distressing time. xoxo