Help Rob Live with Dignity & Independence

We never think it will happen to us—until it does.

Most critical need os caregiving support right now ($2,500=$4,000 a month).

My husband, Rob, has Primary Progressive Multiple Sclerosis (PPMS)—a slow, relentless disease that has stolen his mobility, his independence, and, at times, his dignity. He was once a thriving tax director, a dedicated single dad, and a man making plans for a retirement that should have been decades away. Now, at just 55, he can no longer transfer from his bed, use the bathroom without help, or get into a car without a difficult, exhausting struggle.

Rob and I found each other after we had both been widowed. We know what it means to lose someone too soon. We also know what it means to fight for every precious day together. Now, we’re fighting again—this time, for Rob’s safety, dignity, and ability to live as fully as possible for as long as possible.

We have fought every step of the way to get him the care he needs, but the system is stacked against people like us—those who don’t qualify for government assistance but also don’t have the financial resources to cover the crushing costs of long-term caregiving.

I am asking for help. Not because we want charity, but because we have exhausted every other option.

What Rob Needs

Right now, our biggest barriers to his safety and dignity are basic necessities most of us take for granted—getting in and out of bed, using the bathroom, traveling to doctor’s appointments, and receiving the daily care he needs.

UPDATE: GENEROUS FRIENDS HAVE COMPLETED THIS PROJECT!!! Thank you to Rob's friends he used to work with at E&Y he has a fully functional bathroom that meets his needs so well. A Bathroom Remodel – $15,000 (I had it at $30,000 but just found the quote from a year ago and it was half of what both of us remembered. So...with donations so far we're almost halfway there!)



Getting to the toilet and shower is dangerous and exhausting. We need to remodel our bathroom into a roll-in “wet room” with:

✔️ A zero-barrier shower he can roll into

✔️ A toilet that allows safe transfers

✔️ Space for a caregiver to assist when necessary

A Wheelchair Van – $80,000

Update: we have purchased using funds from selling my car for downpayment. Our monthly payment is quite large, but we have needed this vehicle to get Rob to appointments and to maintain any kind of normalcy in our life. Monthly contributions offset our $1,300 car payment.

Transfers in and out of a regular car are painful, risky, and getting harder every day. A wheelchair-accessible van will allow Rob to:

✔️ Drive his power wheelchair straight inside

✔️ Minimize dangerous, exhausting transfers --which have become impossible with Leslie's recent health porblems.

✔️ Maintain mobility and independence

Tilt in Space Wheelchair

This specialized wheelchair will allow Rob to go from sitting to standing, giving him:

✔️ Greater freedom in daily tasks

✔️ The ability to shift his weight and reduce pressure sores

Medicare will partially cover, but we will still owe about $5,000

Ongoing Caregiver Support – $2,500/month

Since I've been in and out of the hospital, we have someone coming for 3 hours in the morning to help Rob get out of bed, toilet, dress, and eat. He then has to try to stay safe until we can afford for someone to come back and help him back into bed. This is not idea. Ideally we need someone for about 8 hours a day to be available to him. The true cost of this would be about $4,500 a month --that's $20/hr for a neighbor without medical training. We can't afford that. It is still my hope my health with improve that we won't require that much help. But, right now we do.

For perspective-- Rob's needs being met living in an assisted living facility would be roughly $9,000/month. So staying home is still a deal. And a nursing home? That would take his entire income and then they would recoup from his estate after he dies. That's just not an option.

All of our kids are out of the house now. Because of Leslie's intensifying lung issues, her ability to do the heavy lifting of caregiving is increasingly limited. We have applied for every program and do not meet criteria as we are not poor enough for medicaid--but we are not wealthy enough to pay for as much help as we need. Trust me when I say I have banged on every door for this. Wait it until it is you. You'll see. We NEED to fix our healthcare/caregiving systems in this country. The situation is positively desperate.

Why We’re Asking for Help

For the past 10 years, Rob has been on a fixed disability income after being forced to leave work. I have fought for every single resource available—and the truth is, there just isn’t enough support for people like us.

We don’t have willing/able family to step in and help. That means caregiving, advocacy, and financial support for our household falls on me. And while I am determined to provide for our family, I also need to keep working to cover our basic living expenses--and my own health needs have kept me from even working as much as I used to.

We are not giving up, but we cannot do this alone.

If you are able to donate, every single dollar will go directly toward these life-changing needs. If you can’t give, please share this fundraiser with others who might be able to help.

Thank you for reading, for caring, and for showing up for us. This is difficult to put out there when we know SO MANY people are struggling in SO MANY different ways. But, we know you'd want to know we need this help. And your support means more than words can say.