feeling frustrated, alone with problematic family

anjolie

To start; I'm 44, currently living in Colorado. My mom was diagnosed in 2016 at the age of 63 with early onset. I signed her up for medical trials, the first round did really well and was helping until it was de-funded. Tried again with another one, that treatment didn't take at all. She has obviously gotten worse as there is no getting better from this disease. At the present moment I'm living with my parents. My father who is absolutely no help at all when it comes to my mom. Constantly yelling at her (short term is gone) and ignoring her, leaving my sister and I to do most of the caregiving. We all live together so there's 7 of us in one house, makes it crowded and stressful. He's not in the best health; diabetic, had a heart attack in December, recurring bladder cancer and he's incontinent 70% of the time but refuses to wear the diapers we bought. My mom is also incontinent, has a habit of pooping herself, grabbing it out of her pants and throwing it on the ground/floor. All the while I am the one who is home with them 100% of the time. I'm currently not working due to a back injury so there's that added onto everything else. He blames me (I'm the oldest) for everything wrong. So I'm having to deal with his incompetency as well as trying to take care of her but I'm beyond burnt out as I've been her main caregiver for 8 years. I can't leave them unattended for long periods of time; my mom has wandered twice, both times ending up with police and Adult Protective Services involved. It never goes anywhere with any of them. I've tried caregivers with their insurance but they're only alloted 8 hours per month per person. My father refuses so I tried for my mom. That caretaker lasted 4 months and I found out she was clocking for hour she wasn't working. I've tried countless times to remedy that situation but keep getting the run around with their insurance. My father currently pays for a 1 day a week caregiver that's here for 4 hours to take my mom for walks, shower her and help clean, but 4 hours isn't enough!!! And he constantly complains about paying for it when it's the ONLY respite we have. They are terrible with money but won't allow anybody access to their financials. It took my father 5 years to finally sign over medical POA. There is no way for them to move into a home.

I have a hard time connecting with people because a LOT of people in my situation are older than I am. All of my friends and people my age all have "normal" parents. I'm at my wits end with all of it. My sister & I are both on the brink of mental breakdown.

I don't know what else to do!!!!!!

Quilting brings calm

You say there is no way for them to move into a home / but you also don’t know their finances. So can you explain why they can’t move - or us it that he refuses to consider it?

What do you think would happen if the five of you( you, your sister and whomever the other three are) moved out and refused to be your parent’s caregivers? Would your dad then be interested in moving into assisted living with your mom- or placing your mom into memory care?

It is legally your father’s responsibility to care for his wife, not yours. You can indeed move out if you can afford to do so.

What does your father think would happen if your mom wandered off again - especially if you all moved out?

In a different direction altogether- have you talked to a lawyer about becoming your mom’s guardian? I assume your father would need to open up the financial info for that.

anjolie

The house is in reverse mortgage and there's no extra savings anywhere for them to move into a home. If they did so we lose the house which then leaves 5 of us without a place to live. He's also stubborn as hell and says he's going to die in the house. Yay.

If we were able to move out we would have done so already but the cost of living in Colorado is insanely high. All of us would have to work 3 jobs to afford rent on anything.

My father didn't notice the first two times she wandered. The first time he thought she was just in the back yard. Second time she took the dog for a walk up and down the block but managed to talk to someone, get in their car with our dog and go to the cemetery for 3 hours. He didn't think that was a big deal and told me to call the police. I was in the hospital that day getting an MRI done for my back pain so I told him he had to handle it. We now have cameras and she has air tags attached to her shoes as well as one on the dog.

We've tried to have the conversation of guardianship but he is dead set on fighting us on everything. None of us have the income to retain a lawyer either and unless he's deemed incompetent by a doctor and the court it wouldn't go anywhere.

Another reason we don't want to do it is to watch him learn his lesson. He has no idea how to take care of another person, he's always had my mom or his mom taking care of him and I am NOT the daughter who will do the same, especially with the way I'm treated. I know that sounds bratty in some sense but I also have to put myself first. I've been neglecting to do that for so long and now I'm so damn tired of being used and abused that I'm not taking his shit anymore.

I'm STUCK! Every time I've tried to call for resources it doesn't last and eventually blows back up in my face so it's difficult to want to try. And being the oldest with no husband or kids I'm the one that everything falls on, which isn't fair either. I'm just tired of being the one taking care of EVERYTHING.

mabelgirl

Frankly you must make some hard decisions. You say you are on the verge of a mental breakdown and from reading this it’s no wonder you are. Is your health less important than your parents? What would your parents want for you ? I am 65 and have children your age. I would not want them sacrificing their lives to carry me to my end. In order to get your parents the help they desperately need you guys need to leave the home so that APS and the state take over. You may want to verify there are no familial laws in CO requiring children to take some responsibility for parents but a google says CO is not one of those states. I believe as long as there are able adults in the home to take care of mom and dad the expectation is you will. Your other recourse , expensive, is to get guardianship of your parents. If you can get your dad to file for Medicaid to get some long term care assistance that can give you more resources. It just didn’t sound like your dad would cooperate thus I think you either leave or force guardianship. I am firm believer that generally when we will feel stuck it’s really because we don’t want to do what we know must be done as it is painful and hard. If you guys do leave I would contact social services or APS and let them know your parents are alone now.

Prayers for you and siblings for strength and wisdom.

anjolie

My sister and I just had this conversation earlier. Right now we both have medical issues that we need to resolve first, for ourselves. She's concerned about a lump in her breast and I have a bulging disc in my back that I'm going to PT for and getting a second steroid injection at the end of the month to see if that eases any of my pain. I can't work until I get that figured out because I don't know what my limitations are and I the last thing I want to do is reaggravate it and have to start over with everything.

Attempting any conversation with my father about anything is nearly impossible. He's a narcassitic, verbally abusive, pathological liar so even trying to have a conversation he's yelling and bringing up stuff he did for us 20 years ago. It's all bullshit with him. He also doesn't give me any respect for the fact that I was the one, from the day of diagnosis, that was her main caretaker. I signed her up for medical trials and took her every month. I'm the one who makes all of her dr's appointments. He is still so delusional about everything it makes it impossible. So there's no conversing with him, it's just a screaming match. He just expects my sister & I to take care of him. "We took care of you so now it's your turn to take care of us". The biggest thing with that is he was never home when we were growing up so he doesn't have a right to claim that. He thinks that we're supposed to sacrifice ourselves for them and we can't anymore. And we've had the conversation that WHEN we do leave we're going no contact with him. He's on his own, he can learn his lesson. It's just getting everything else figured out that's causing all the issues.

He's already been flagged by APS and doesn't realize if we leave he's on the hook for EVERYTHING. And trust me, we want him to learn his lesson. Financially we're screwed and so it makes everything that much harder.

We have also talked about guardianship and have brought it up to our APS case worker to see if there's any way they could help. I'm looking at a ton of other resources as well. They both have Medicare so it can be difficult to navigate with their insurance restrictions. I'm trying my best to figure things out but also just so tired of having to be the one to take care of it all the time. Just once I'd like someone else to write the emails or make the phone calls. It's all extremely frustrating.

M1

Sounds like your dad is probably having cognitive shifts of his own. Trying to "teach him a lesson" is likely just as futile as trying to reason with your mom. You may be better off emotionally if you can let that go, but I know it's hard. Probably should look at it as that they are both affected by dementia at this point.

Victoriaredux

I suggest that you and your siblings have a visit with an elder law attorney to have the reverse mortgage reviewed and what options can be suggested. Maybe your local Aging Council can refer you to a low or no cost firm .

This maybe prudent to do asap since :

https://www.consumerfinance.gov/ask-cfpb/with-a-reverse-mortgage-loan-can-my-heirs-keep-or-sell-my-home-after-i-die-en-242/

if your parents die or are placed it doesn't sound from the article I posted you can stay in the house.

Better to have a say in your future rather than have it happen when you need medical attention of your own.

Take care of yourself first, not selfish, because without your health , who can care for you.

I'm sorry you are all going through this .

housefinch

I’d recommend getting yourself evaluated for whatever social services resources you might qualify for —-Section 8 housing, Medicaid for health insurance, SNAP food benefits, etc. Section 8 waiting lists can be long and you don’t want to go down with the ship. I don’t know what legal options exist locally. I live in CO, and unfortunately a private estate planning attorney will be $5000 at minimum I’m guessing. This has become a very expensive state and if you have any other living options, you might consider those. It’s not a state with a very generous safety net. Wishing you the best.