My mom is losing her battle with breast cancer

My mom has been battling stage 4 breast cancer since July of 2015. Unfortunately, that battle is coming to an end as the result of liver failure and kidney failure.

Since November of 2023, she's had multiple hospitalizations, and severe complications. Her medical team at the Cleveland Clinic has done what they can, but they've stated that she will not recover, and it's now time for hospice.

My mom has told me that she wants to come to my home to die, rather than at the hospital or a facility. We don't know if she has 2 weeks left or 2 months, but I am having to arrange home health care and make arrangements for her passing. Even though she's intellectually disabled, she's been able to live fairly independently, so I'm moving out of my bedroom and packing up her apartment, so she can have enough space and privacy and be surrounded by some of her stuff (especially her 2 cats) while she tries to enjoy her last days.

My name is Jamie Van Doren, I'm my mom's only child, so this is all on me. We're not rich or even middle class. Because of a past battle with cancer, my mom wasn't eligible for a life insurance policy. Because she's been intellectually disabled (she's the equivalent of a 10 year old) since she was a toddler, she's never really worked and get's a small social security check that has always gone towards her rent, food, and pets. She doesn't have any significant savings or assets to liquidate to cover the expenses of a funeral, home healthcare, or special foods and supplements she needs as I try to ensure she's as comfortable and taken care of as possible before the end.

I also don't have any savings to dip into for funeral expenses or the increased costs of care, like special foods, and so on. A few years ago, I started a company and all my savings have gone into that (no, we're not profitable, and I do consulting on the side to pay my bills). I'm just not in a position to be able to afford the $1,100/week costs for a home health aid. We'll get a home health aid for 1 - 2 hours a day through Medicaid/Medicare, but that's simply not enough.

My mom needs help feeding herself, bathing, and getting cleaned up. I'm happy to help with that, and I'll do my share of the work cooking, cleaning, and taking care of her. But I still have to work to keep a roof over our heads, and because of her urinary and bowel incontinence and other issues, she just requires more care than I feel comfortable providing 24-7 on my own with no support.

I've budgeted $1,100 week for home health care for 6 weeks, and $5,000 for a modest funeral and memorial. If I can get that covered, I'll find a way to cover things like pull ups, disposable mattress pads, baby food and high calorie meal replacements (she's lost 40 pounds over a period of 3 months (down to under 90 lbs from 124), because we've had a hard time ensuring they give her food she can/will eat while in the hospital). Every dollar goes towards her care, and then the care of her pets if there's anything left over. My biggest concern is making sure we can afford the medical supplies and the extra home health aide help.

** 3/8/24 EDIT: as of Feb 29, 2024, my mom is home with me and we're doing home hospice. Unfortunately, most of what I was told about the amount of support was simply NOT true. Hospice provides 3 - 4 hours of care per week. The rest is on me. When doing the budget I also did not account for overnight care, because I wasn't aware of how often my mom would need to be cleaned after using the bathroom (3 - 4 times per night). Unfortunately, I have to adjust the budget to account for this, because I have been getting maybe 4 hours of sleep per night. I'm worried about my ability to provide the best care, if I'm so constantly sleep deprived.

Ironically, we could get more care if I said we'd do full comfort care and not allow any interventions (dialysis, etc) - then they'd give more help . But there are some medical interventions that will help my mom be more comfortable, and I don't want to have those excluded as an option for her.

I've never had to ask for help before and this is incredible embarrassing and humiliatingly, but I'm at the end of my resources and I can't figure out any other options or solutions. I want my mom to be comfortable. I want her to be able to pass where she wants to, and not in a facility. I want her to be able to have some kind of burial and service, and I guess I'm willing to put myself out there, set aside my pride, and ask for the help, so that I can make that happen for her. She's incredibly sweet and kind, and she deserves so much better than the hand she's been dealt. And she deserves better than the suffering she's gone through for le last several months. And I feel completely helpless to fix any of it. So, I want to do my best to ensure that while she's at my house she's not suffering. And when she dies, she is remembered, rather than just dead and forgotten with no one other than me speaking for her.

Thank you for reading this. Thank you for any kind words. Thank you for any support. I'm grateful for any support, even if it's $1. I'm grateful for any social media shares as well.

I'll do my best to update as frequently as seems reasonable.