Please help Gilly Ruben living with MS

Hello Friends,

I am writing to share the story of my friend Gilly Ruben, and her courageous battle with Multiple Sclerosis (MS). On Gilly’s behalf, we are seeking financial support to help alleviate some of the burden of her increasing care expenses.

Gilly was diagnosed with MS 34 years ago and lived a relatively normal life continuing her career as a Production Supervisor on some pretty great films. Around 15 years ago the MS progressed, and she became entirely dependent on a wheelchair but has lived independently in her wheelchair accessible apartment since then. That is until February 2024, when Gilly had a terrible fall, and no one found her for 16 hours. She was discovered on the floor of her apartment and hospitalized, unable to move or feed herself for three weeks; she then transitioned to skilled nursing for two weeks and then finally on to a rehabilitation facility. She was eventually able to return home to her dog Clover and have her life back. However, she was still quite weak from the fall and not able to make the transitions from her wheelchair to her bed or bathroom without help.

Home help was too expensive, so Gilly checked herself back in to a “Skilled Nursing Facility” to gain more strength and be in a safe place where there was 24-hour care. Unfortunately, that facility was not as “skilled” as we thought. She was left for hours in her bed, unable to move. The bathroom was not wheelchair accessible, and she had to be lifted or moved to wherever she needed to go. Sometimes she was left for hours in a soiled bed or chair waiting for a nurse to help her. Very humiliating. Gilly has had a special diet tor the last 20 years o help avoid inflammation with MS – gluten free & dairy free – not too much to ask. And yet the nursing facility would consistently bring her cheese sandwiches and ice cream for meals.

Two weeks ago, Gilly decided the better environment for her was to be in her own home that is totally set up for her needs. However, she is not able to live there without additional help. That’s where you come in.

Gilly lives on her disability payments of only $2,649. Her family continue to support her, paying for home owners association and other living expenses that have enabled her to remain in her apartment all these years. However, home healthcare costs are exorbitant (over $11,000 per month), and her family cannot cover them. To stay in her own home that is fully wheelchair accessible and not have to go back to a nursing home or assisted living facility, we need to raise enough funds to pay for home help, plus some other expenses to cover the next three months. We understand this is only a temporary solution to a long-term problem. Gilly has applied for In-Home Support Services (IHSS) from Medicare and Medi-Cal, but the application could take over three months to be approved, and there is no guarantee that she will be approved.

In the interim, to keep Gilly at home and live her life on her terms with her sweet, emotional support, doggy Clover, she needs help 12 hours a day from a healthcare provider. That adds up to nearly $3,000 per week. In addition, although her apartment is fully accessible for her wheelchair, it needs a few updates. For instance, she needs a new oven with the knobs closer to the front – she can’t reach the back, and it’s hazardous for her to use a tool leaning over the heat (which is what she’s been doing). She needs an adjustable frame below her mattress for easier access in and out of her wheelchair. Gilly is no longer able to drive her adapted car because she suffered seizures back in December, so she needs funds to pay for wheelchair-accessible Ubers to go grocery shopping or to doctor appointments. She often orders food delivery because she currently cannot cook anything.

While Gilly waits for the IHSS to be approved it’s better for her general health for her to stay at home than to be moved to another facility, and anywhere else she goes will not allow Clover to go with her.

Any amount you can give will help Gilly continue to live independently for the next 3 months. She has an incredibly strong will and spirit, and that is what has brought her this far living alone. Gilly has a fantastic group of friends that have always been there to help her. But we are not healthcare professionals and cannot manage her day-to-day needs. She knows that’s what is needed for now. Medicare will cover PT for a while, and hopefully, that will help Gilly gain her strength so she can return to full independence.

Thank you so much; Gilly and her family really appreciate it.