Advice on next step care, when family is struggling

CassieHoll

Hi All, 

My mother is only 65 but in late stages of EO. I'm only 36 have a 15 month old son and live out of state. My 30 year old sister is my moms part-time caregiver (my dad is full time and we have a caregiver 10 hours a week just to give my dad a break). My sister is due with her first baby in April. 

My mom's mobility has declined rapidly in the past few months along with bathroom control, and mental abilities. I feel like I am grasping at straws trying to decide what to do next. My dad and sister insist they are what is best for my mom, and we have hypothetical talks about "putting her in a home" but I'm over here on FaceTime watching them STRUGGLE and don't know what to do. 

What even are the steps for putting someone in a AL or MC? How can you figure out if you can even afford it? Is there a go between before moving to memory care? A nurse? Overnight help? What do people do? We are absolutely in a situation where money is tight and limited. 

April is fast approaching and there is absolutely no way my sister can recover from birth and care for my mom at the same time. And my dad is just...in survival mode already is really the only way to phrase it. 

The extra hours are not going to be manageable for him. I am the most removed from the situation so I hate coming in all bossy, but I am truly concerned for everyones health in well being in the coming months. 

Someone please help me! Where do I start?! 

M1

Cassie, who has power of attorney for her? That's the person who makes the decision. Perhaps you all should have a meeting with a certified elder law attorney to help figure out the steps necessary to qualify her for long-term Medicaid. That's likely the place to start.

CassieHoll

thank you that's helpful!

abc123

Hi Cassie, I'm so sorry about your mom. I understand your concern. This disease can and will take down your dad and sister if they aren't realistic about the facts. I agree with M1 about meeting with a CELA. Some offer a first time consultation at no charge. They are expensive BUT worth every cent. A good CELA can give you important information and guidance that no one else can offer. Please try to do this as soon as possible. It will put your mind at ease. 

From what you have described about your mom, she might qualify for hospice. I suggest calling a few different ones and also ask friends if there is one they have worked with in the past. The worse that can happen is they say no. Hospice is a wonderful source for help for all of you. Things have changed greatly in the past few years where hospice is concerned. My mom has been on hospice for about 4 months now. She is considered stage 7 but her vital signs are still very good. The hospice RN told us today that mom could pass any day or she could linger while continuing to decline. It's a terrible disease. I'm sorry you have to be here but you will learn a lot from the people here. We are like a family and we support each other. Please read as many post as possible, ask any questions you may have. Nothing is too sensitive. And vent! You can come here and unload on us. We understand. Good luck Cassie! 

harshedbuzz

You might try the Area Agency on Aging local to them to get the names of facilities that do accept Medicaid patients and perhaps even names of CELAs. You can also find a CELA here-

National Elder Law Foundation (nelf.org)

You can do some research on your end about what's available, what waiting lists look like and also check out ratings from the CME. Skip services like "A Place for Mom" as they only offer the sorts of places that are self-pay in their contacts. 

Medicaid is the safety net, but it is impossible to make generalities as each state offers different options- some will pay for MC, some only for a SNF (and she'd need to qualify for that level of care), and some will pay for some in-home care in avoid the additional costs of a facility. If they don't have much in the way of assets, she will likely qualify easily, and your dad will be able to retain a share to be a "community spouse". A CELA can spell this out. 

Assuming your sister is keeping this child, she is going to be too busy to be of much assistance to your dad. Timing is critical. Unless your parents have money to pay for a couple years out-of-pocket, their choices will be limited. This is especially true in areas where staffing shortages have put a freeze on new admissions.

CassieHoll

This is incredibly helpful thank you so much. This gives me a little direction to get started.

CassieHoll

Thank you so much for the welcome and taking the time to put that together. It really helps.