Help Me Keep My Mom Safely Home: Accessibility Remodel Plea

This is the hardest thing I have ever had to do....

After a lot of internal turmoil, I am swallowing my pride and humbly asking for help. I am desperately trying to remodel my home to make it accessible for my disabled mom, Karen.

I've never been in a worse place emotionally, financially, or mentally as I am at this time.

I know this is so long, so please bear with me. I really want to put every detail and reason out there to honestly explain how hard I am struggling. I never would have made this if I wasn't absolutely in dire need of help. I feel so hopeless and defeated.

If you know my mom, you know she has a heart of gold. She is a medically retired registered nurse and my right-hand man in animal rescue. Even though she is only 62 years old, these past few years of life have not been kind to her. I will do anything to keep her home with me forever, even if it means asking for help. She raised me as a single mom while caring for her sick father. All while putting herself through nursing school to make a better life for us. She has spent her life caring for others, and now it's my turn to care for her.

My mom suffers from severe scoliosis of her lumbar spine, which is the root of her disability. All of the specialists we've seen have never seen a case as bad as hers. Only 1% of people have increasing curvature after puberty, and she is the "lucky one" in that 1%. The opportunity for fusion was missed by our medical system, and her curvature will only continue to increase.

Our house is full of steep stairs, and she has fallen down them way too many times. One fall caused a fracture of her cervical spine. The fracture of her c5 is unstable and she is at risk of paralysis at any time. However, she has such severe osteoporosis that two orthopedic surgeons have advised against a surgical fusion. They feel that the risk of paralysis is too high as there is not enough bone left to screw hardware to. At baseline she walks with a walker bent nearly in half, and has to wear a cervical collar to stabilize her at all times. Any mis-step and subsequent fall would likely fatally sever her spine. She is living on borrowed time. And I want every moment to be of quality and meaning, not alone and stranded upstairs struggling to do basic activities.

She has also underwent a multitude of GI surgeries over the past few years. Most of this is from IBS and the way her spine is "rearranging" her internal organs. I have watched my once healthy 125lb mom who ran 10 miles a day and worked out non-stop wither away to a terrifying 76lbs. Her spine has curved so much she has went from 5'4" to 4-10".

On Sunday, August 25th, she underwent an unexpected emergency surgery for a perforated ulcer. It's amazing that in her condition she made it through surgery. She shocked everyone with her strength and determination. After a stay in the ICU, she is home, but significantly more debiliated than before. She is currently confined to her in-law apartment in my home and requiring 24/7 assistance and supervision.

Her in-law apartment is on the second floor. Our home is an old farm house and is not safe nor accessible for her to regain any form of independence. At this time, I am having to physically pick her up and lift her in and out of the shower. There is a step up to a ledge and then the actual bathtub wall to get over. We need to have this bathtub torn out and replaced with a walk-in shower for both of our safety.

We are also in need of an electric stair chair lift for her to come to the main level of the house. She is not able to do the dozen steep steps, and we are again carrying her up and down. She spends most of her time up here in her apartment, and is not able to safely come down to be apart of the family.

I feel like I'm keeping her as a prisoner up here, and it is shattering my heart. In a dream world we would be able to knock out the walls to make her an open studio without so many narrow spaces causing trip hazards, but I know that isn't realistic monetarily. We have converted her spare bedroom into a little kitchenette/living room so she at minimum has everything she needs up here while in confinement.

Lastly, there is no entrance to the house that is ground level. For this reason, we need to install a ramp for her to get in and out. The lowest entrance has 6 stairs she can't get up and down. We ensure that one of us is home 24/7 incase there was an emergency and she had to get out. Thankfully, she is so small any of us could get her out, but it is so unfair and hard for her to be completely dependent on us.

She is hard worker and hates sitting still. Despite her constant severe pain, she is always up doing something to help me with the animals and housework (See photo below of Day 1 home!). Nothing would make her happier than to be able to get to the main floor and navigate it herself with her assistive devices as she was before this surgery.

My mom has always been my other half. I know I've posted that I'm overwhelmed and have had to take a step back from everything to focus on caring for her. At this time I have not only lost my mom as my partner who helped me keep up with all of the household and rescue things, but transitioned to caring for her as well. My workload has more than doubled. I have never felt so hopeless and defeated. Admitting I need help is the hardest thing for me. However, I am beyond desperate to modify this house for her mobility needs to get both of us back on our feet again.

I have spent the week we've been home exhausting all options before making this plea for help (see my edit below for everything we have tried!) We all know our Healthcare system is broken, but I really didn't see how terrible it was until this.

My mom has Medicare, and they do not cover any home modifications like this. Apparently, in their eyes, people aren't entitled to independence or access to basic things of "luxury" like showers and using a real toilet. Without boring you all with the details, we have learned that they only cover DME (durable medical equipment) that will give them the minimal mobility needed in the home. In her case, it was one single walker that she can use with a one person assist. They say that sponge baths are fine, and a commode could be used on the first floor as her walker doesn't fit in the half bath down there.

You read that right. Insurance doesn't cover a chair lift that would bring her up to her full sized large bathroom in her own apartment. Setting her up in our living room with no privacy and no bathroom was their answer. Instead of treating her like a person, they would rather pay the small amount for a commode for her family to empty in the middle of the house. Showers aren't considered a medical necessity, so constructing a walk-in for her isn't covered. I'm not sure about anyone else, but being told I wasn't human enough to deserve a shower or to use a real toilet privately is infuriating and disturbing.

The home modifications we need aren't anything but pure necessity to meet her basic human needs safely. We have spent days chasing dead end grants and payment options. At the end of the day, providing her with an accessible and safe home beyond what they deemed necessary is my responsibility to figure out. I refuse to put her in a nursing home. She deserves to spend her life with her family and furry grandchildren. I will go to all ends of this earth to give her the life she deserves.

Now here comes the brutally honest part that I hate making public. Normally, I would take out a personal loan and just do this for her. However, I can't. Animal rescue has consumed my life and really destroyed my financial stability. I cannot take out a loan for her. My credit is strapped. I am out of options.

In all transparency, I owe $57,000 in credit card debt plus $35,000 in personal loans. 90% of this is all cat related. Surgeries, medications, supplies, ect. added up so quickly. I pay out of pocket for my 21 inside cats and 15 outdoor ferals. As if food and litter isn't pricey enough, most of my cats are on medications and have special needs that I pay for. Combine that with my student loans, home mortgage, and both of our cars being in my name, even high interest lenders for bad credit won't give me a penny. I've even explored the option of putting my jeep up as collateral. I've also looked at home equity loans, but again, my credit is too destroyed to refinance. All efforts have been fruitless. ' I feel like I blinked and everything I worked so hard for is gone.

I'm currently out of work on FMLA with her. My paid leave has not went through, and even when it does is only 67% of my last 8 weeks average pay. I've only been working part-time as I have been off a lot caring for her. Even when that comes through it's not going to catch me up, let alone provide anything to achieve these modifications. I haven't had a pay check in weeks, and for the first time in my life my bank account is negative and I can't pay my bills. I'm struggling to even get food for both us and all of our pets and fosters. I am actively looking for a remote job I can do while being here caring for my mom. As much as I love love love rehab, I know working on site isn't realistic. I've worked 60-80 hours per week since I was 19, so I know this will be a huge drop in pay, but is the only choice I have right now to have some form of reliable income.

To add insult to injury, I am panicked about our adoption center coming Wednesday. It is in my name. I have to find a way to pay that off for $23,000 within 90 days of delivery or will face $12,000 more in rent to own and interest fees. Our totaled van we haven't replaced is also hanging over my head.

***While donations to myself are not tax deductible, donations to lessen the burden on me from the rescue standpoint are! Our rescue is Headed For Furever Inc. Our venmo is @headedforfurever under the business category and our PayPal is under [email redacted]. The links to these and our wish lists for supplies are on our profile page.***

If you've made it this far in this short novel, thank you. This GoFundMe was so hard for me to make. I've went back and forth for days on end. I haven't been able to sleep thinking about it. I never thought I would be the one asking for a "hand-out". I have been barely treading water for a while. Now I am drowning. Most days I don't even have time to eat. I'm lucky to get a granola bar and few cookies. Life has suffocated me. Getting out of this hole I have dug myself feels impossible. Please know that asking for help took me being on a level of hopelessness and despair I didn't know existed. I never thought I would make something like this for anything but our rescue.

I have fears of this being embarrassing and going nowhere. I expect backlash and being belittled and judged. But I'm so desperate I have to try. I really have nothing to lose at this point. I don't expect anything from anyone. I know how hard times are now more than ever before. If anyone even has a few extra dollars it will put me in a better spot than I am now.

I sincerely appreciate everyone that had had my back these past few weeks. While I haven't had time to answer everyone, know I see and appreciate you.

Thank you for all of the love and support as I work tirelessly to care for all of these tiny creatures and most importantly, my momma.

A few people have asked for other platforms to donate to avoid GoFundMe fees so I have attached my personal Venmo & PayPal links.

Venmo: @mccartym17

https://venmo.com/code?user_id=2590166657007616542&created=1725816275

PayPal: https://paypal.me/mccartym17?country.x=US&locale.x=en_US

** Edit to add everything I have done so far.

I appreciate the outpouring of support and advice! I just wanted to add a quick rundown of everywhere I have tried and what she has.

She has a PCP and Case Manager. Her insurance is only Medicare with Cigna for part D.

Her PCP did the scrips for the shower, lift, and ramp, however this was denied by Medicare for not being "necessary". Medicare only covers the minimum amount of DME (durable medical equipment) they deem necessary to menuver the home. I go into more detail above about this. The cover the bare minimum they consider necessary to maneuver the main level of the home. They do not cover anything for community mobility, and do not see it necessary to be able to access all levels of the home, even though her "home" is an in law on the second floor. They say that she could do the stairs in and out of the house with a rail and assistance, and could be set up on the first floor for living. Our half bath there is too small for her walker to fit in and there is no shower. Medicare's view is she can have a commode that family can empty, and sponge bathing is fine. In a nut shell, Medicare doesn't view the disabled as people who don't deserve privacy to use the bathroom or even a real shower! It's really disgusting how they feel these people should live. Especially considering the modifications needed are not astronomical or complicated to offer her an independent quality of life.

We applied for Medicaid back in January. She was wrongly told that she made $20 a month too much of Social Security Disability to qualify by the Marketplace. This is her only form of income. We have since learned this is false. Her yearly income is $17,500. She loses $174 of that each month for Medicare Premium.

The Medicaid application is complete and we have to meet in person at the DSS office to finalize. I cannot get Freedom Care to care for her until her Medicaid goes through as Medicare does not cover it.

We have also applied for the Medicare Savings to hopefully stop that $174 from being deducted each month.

I believe that installing her own kitchenette upstairs qualified her for SNAP. That application is complete and pending.

We have contacted Lifespan. They were wonderful and gave us a handful of phone numbers to call for grants/assistance with the necessary remodels. However, they did give me a warning to not get my hopes up as getting these modifications covered was highly unlikely. After countless hours on the phone and filling out applications all of those leads have been dead ends for one reason or another. Location/total household income/age of house/ect. They did offer free grab bar install, however we already have grab bars in. Unfortunately no number of grab bars will make her current bathtub safely accessible. The tub wall combined with the first step up isn't something she can maneuver. It was dangerous and she had taken falls there before this surgery. We have wanted to replace it for a while, but ran out of time faster than we thought we would.

I do appreciate any and all advice. I just wanted to be clear on everything we have tried so far! ***

Holding our Rollo girl as she crossed the Rainbow Bridge. My mom is a board member, and one of the most valuable parts of our rescue Headed For Furever Inc.

My Junior Prom before she got sick.

Day 1 home from the hospital. Insisting I set her up to help me. So, she became the laundry lady.