The Caregiver & Dysfunctional Families: How are you doing?

Ali,
You could write a book. It would be read, and may change things for the better for elderly in facilities.

I couldn't do it, but you could.

Can't get back to sleep. I need to practice more self discipline.
It's too early to get up and about.
Sorry to be repetitive, but I blame the full moon, 98.5% and waxing.

I will pray starting with all of you.

ali - I hear you. You are hurting and very, very angry. Rightfully so!!! What to do about it now is another thing.

I think first of all you need to deal with you. You have been overwhelmed with life issues - yours and your family's ever since being involved with GM's care. Probably before that too, but that it is the time period I know best.

It has been a lot!!! And you have powered through it, likely not able to deal with all the emotions as you went along, so they built up.

By all means write it all out. Feel your feelings as you do this. Use the energy you have now to benefit you. Send's idea of writing a book may be your answer. Write and exercise!

Be sure your health and hormones are in good balance. I am NOT using this as an excuse - the typical pre and menopausal junk aimed at women. I have had my thyroid out of whack and it affected my emotions deeply. You owe it to yourself to see that you are healthy.

Give yourself time and think how best to use that time.

GM would not want you to get yourself into any trouble either. She is gone. You and your memories and emotions are here. You have achieved academic success in an area where your reputation could be affected by your proposed actions. Glad made that point first. You have worked long and hard and succeeded admirably. What you have achieved is very valuable.

Right now look after yourself in all ways. Feelings are temporary. Remember we are powerless over other people. This is affecting and will affect you far more than anyone else. ((((((((hugs)))))))

Ali, I am right there with you, I don't think I slept a wink last night. The last time this happened I made a mental note that I had a piece of Hershey's Special Dark Mini too close to bedtime. Yes, I had a piece last night as well. No more of that!

I'm indulging myself too much with these posts...

But I want to say...

I never wanted any of this. I lived in Marina del Rey before I went to south Chicago in July 2011 to help my dad and GM. I had a great life at that time. I went because my dad - who never calls me - had called me asking for help in the months after my cousin Db, GM's previous guardian, had died. Dv was the new guardian, and things weren't going well under him. I had been to visit GM in March 2011 and was sad at how filthy everything was, and she seemed depressed. I figured I would go clean the place up and try to help my dad with the new caregivers he was butting heads with, and that would be it. I'd go back to MDR.

I started working as soon as I got there. I put the house in shape while the caregivers watched GM. But I noticed there wasn't food in the pantry or refrigerator when I arrived. The good caregiver, B, started the same day I got there. We noticed these things and were suspicious together from day one. GM's account was being charged for shopping, so where was the food? I knew there was a problem. So, in addition to non-stop housework, I started looking into things. And that caused issues because I was a pest. lol If I could go back, I would simply do the work and keep quiet, but 35yo me was so confident that right always wins over wrong.

Whatever chaos was in my life before caregiving was different. The experiences with GM, the house/mold, and my dad's care changed me. I hope I never feel that disheartened ever again.

Oh ali - Please know that I am not in any way questioning that it was as bad as you say or that it has changed you. I am just saying look after yourself.

When I said probably before that to, I was referring to your family of origin issues. I know nothing about your life in MDR.

Golden, it did sound like I was defensive in that comment, but I also wanted to add that context. I feel like talking about this right now, as you can tell! :) It's definitely ALL on my mind.

My life was more chaotic from 2011 forward, and you've never known me outside of that. I had different chaos before then, stemming from a rough, uber-religious childhood and the emotional immaturity I left it with. And I pushed myself hard, becoming my idea of what a successful, upwardly mobile young woman should be. lol My bf in 2011 was wealthy, and I had a spoiled life with nice things. We'd been off and on for twelve years at that point. He's still a friend and the best bf I've ever had. The sadness of losing him over this situation is also part of the grief because I regret that I left him long enough for him to realize he could live without me. :) I've often wished we had married and had children, and he wanted that when I was in my 20s. He's still a bachelor and the best man I've ever met.

I need to get over all of it again, and really, losing my bf isn't a big deal. Bringing myself back to 2011 through these videos is bringing all of this up again. I'm thankful for all the hard lessons I learned from my caregiving experience, but I paid a high price.

Thanks for being there for me right now. (((((hugs)))))

@Ali

Your family's story is one more sad tragedy among millions of others. An elderly LO needs care and the family get screwed over by a homecare agency or a care facility.
Most homecare agencies will hire anyone. It's a shady business and I own one. For every client case I go out to open I tell the client and their family to make sure the caregivers cannot access their money or their valuables. If a potential client is cognitively challenged or elderly I require a secondary contact that I personally check up weekly to make sure everything is going smoothly in the client's home. Depending on the care situation, if there isn't a secondary person listed, my agency will not take on the case.
When it comes to payment, the client or their representative deals with the office directly.
I believe you when you say you're not exaggerating, but I don;t see how a criminal office manager can prevent a care client from having UTI testing. Who had your grandmother's POA? At over 100 I doubt she was paying her own bills every month and managing her own affairs. Someone had her legal authority to make her decisions and it wasn't the agency office manager. I also know that I was an in-home caregiver for almost 25 years. Many of those years were as agency hire. A vulnerable person cannot be left dependent on a care agency. One of the reasons I went private care only was because the business practices of homecare agencies made me sick. They screw their employees over just as hard as their clients. Complaining about a caregiver to the agency that employs them isn't enough. There has to be someone checking up all the time. You also don't have to stay with an agency you're not satisfied with either. Every homecare client gets a Bill of Rights in their care folder. Most people don't even bother to read these. A client or their legal representative has a right to know if a convicted criminal is coming in their house and to refuse to have them. Clients or their representatives can also insist on regular drug testing results from any caregiver in their home and police backround checks. You have a right to all of this.
I'm sorry your family had such a terrible experience. You should write a book. I've been working on one about my long experience for about three years now. Do it.

(((((((hugs))))) back. You went through some horrendous situations caregiving. I have been amazed that you managed to survive. And to go on and thrive.

I have an idea of the chaos from a dysfunctional family and what that does to a person and how it affects their growth and development. It sure did a number on me.

So sorry about your bf. That was/is a great loss. It's more than losing a person, as you haven't lost him, but a role, a way of life and plans for the future as he stated them. Since he is still a bachelor I want to hope there still is a chance for the two of you, albeit a different scenario.

I'm glad that you feel safe talking about your stuff here. I let loose a few posts below re a number of things, including my daughter, and I realized I am grieving that she has her version of the family genetic curse from my mother's line and that. although she as gotten much treatment and still sees her psychiatrist, I suspect that things are about as good for her (barring the cancer) as they can be. I guess I need to rejoice they are that good rather than focusing on what isn't. No parallel to you here - just where I am at and an understanding that life isn't easy some times.

Thanks for sharing that, Burnt. The industry could use a lot more people like you in it.

The agency could refuse to allow her to be taken for UTI testing because my cousin was the guardian and living out of state. Since the agency perceived me as the enemy, anything I wanted was nixed. I didn't know about the elderly and UTIs back then, but I saw GM's urine was cloudy and knew she had BMs in her Depends. When I pushed for testing, the manager told the caregivers I was being dramatic and said they weren't to take her to the local clinic.

It just stinks. And yes, caregivers stole from her. The jewelry was long gone. One caregiver had opened a credit card under GM's name, and I reported that to APS. A check came in the mail sometime later for the amount charged. So, in my case, I was finding problems and reporting them, and since I wasn't the legal rep for GM, the agency wanted to get me out of the way.

Golden, that was the feeling I first had when I started reviewing these old docs a few days ago. How the heck did I live through that...!?? And then, in the past two days, the grief is coming on.

If nothing else, I think this could be good therapy for me to revisit this stuff in the long run. I think having a decade of perspective to view these things is helpful.

Hi, Duck. :) I almost missed you, in the middle of my upheaval. I recently worked on old paperwork and laptops that I want to get rid of and found many documents and videos from the start of my caregiving in 2011. Reviewing them is causing me a whole world of feelings. I'm always thinking of you, sis. Keep walking in the Light. (((((hugs)))))

Ali, all of this was before my time. I just want to give you a hug, tell you to do what you need to do to purge this toxic memory. If that means criminal prosecution, writing a book or whatever, do it

The board and care my dad was in was pulling some serious crap, I pursued getting this stuff exposed and corrected. They ended up being shut down by the state. That was their choice.

Evil flourishes because good people do nothing.

You do what you need to do.

@Ali

The responsibility was on your cousin then. I had a dementia case where the family lived far away. The client was incontinent, in diapers, and bedridden. When I suspected a UTI (believe it or not I could tell by the smell), I called an ambulance and explained that I suspected a UTI. I always sent a bag and gave it to the paramedics with her name, insurance information, and call me when she was getting brought back home. My crew covered her 24 hour care. If she got admitted I called her son. Other than that I handled all of her medical things and did roght by her.
No one ever asked for POA from me in the hospital to treat her. A care agency cannot refuse treatment. I'd talk to personal injury lawyer on that.
Why was her jewelry, cash, credit cards, and social security number accessible to the agency and caregivers? A care agency doesn't get paid by credit card. They get paid by check or insuance. This is pretty basic stuff now.
Did no one communicate any of this to your cousin the POA, or the police, or APS? Like how grandmother was left with crap in her diaper and you suspected that she was sick and needed medical attention. No one thought to call APS or the police and tell them that an elderly, vulerable senior with dementia is being denied medical attention by a minimum-wage agency caregiver and their convicted criminal boss?
They'd act on it.
The responsibility for a vulernable elder with dementia cannot be left totally in the hands of a care agency and their employees.
This is what happened with your grandmother. Sadly, this happens in many families. No takes any responsibility for the elder because they believe the care agency is supposed to because they're the one getting paid. It doesn't work that way.
I've been in this line for a very long time and have worked for more clients than I can even remember. I remember the families who thought that because their LO now had a paid caregiver that the agency or caregiver now assumes full and total responsibility for their needy elder on every level.
These families usually had to learn the hard way that we are not totally repsonsible for every need your elder has.
When I went private care I had a client taken into protective custody because her family thought they'd be slick and left from work and school for the Thanksgiving weekend without coming home (she lived with them). They didn't want to bring her which is understandable, but figured I wouldn't abandon her and would keep her with me for the holiday. I left her with the cops. Her family wouldn't take my calls, but they sure answered for the police.
Families will pull stuff like this. Now your cousin had the POA. They were legally responsible for your GM. You could have done things differently too. Like calling the police. Like communicating with your cousin.

HI Burnt, your comment coincides with some things I'm remembering.

I had good rapport with my cousin/guardian before I went to help in person. We had talked a couple of times. We were on good terms, and I could never have predicted that he would stop taking my calls within a couple of months and sign off on a petition to change residency for GM. I would have left the home before I let that happen, but they never gave me a chance. The petition also called for the eviction of my father, and I knew my GM would NEVER want that, so I had to stay and fight for his sake. I had my immediate family's support because we all knew GM didn't want my dad away. He wasn't physically/financially abusive, just challenged (TBI, disability rating), and sometimes difficult for bad CGs to interact with.

I had good rapport with the agency owner. We had talked many times on the phone and met several times in person. I couldn't have predicted that within a couple of months, she would be saying that I was a drug user and was financially abusing my grandmother. (I'm sure many family caregivers can relate to how ridiculous that accusation is. I left that situation with $16k in unreimbursed receipts and never got a dollar for helping). E.g., Rockhill said I ordered a new washing machine through the trust but didn't put it in the house. It was RIGHT THERE, in the house, and the caregivers used it.

I hired an attorney to file for my guardianship when I saw the direction of things, and I think I would have won. I also fought the eviction so my dad could stay in his home, as GM wanted per her trust instructions. She declined so fast once she was taken, though. Once she passed, my dad was the beneficiary, and there could be no more legal action against him. Guardianship was terminated, and the agency was done.

This has nothing to do with why GM was so neglected previously, but I want to emphasize how FAST my GM's situation went sideways when I tried to improve it after years of her wasting away alone. It's as if no one wanted me to rock the boat, even though I only wanted to provide improved QOL for my GM.

It's my family's fault that we left GM in that situation with no in-person oversight. It was depressing: she had lost her once-fierce independence, and she and my mentally challenged dad were in that filthy house. Bro and I would visit. No one would ever stay over, and we were relieved to leave. It's sad. We didn't know about the theft. I assumed GM got decent daily care. I mainly went to clean the place up. Only after being there did I see the neglect and theft. It wasn't just caregivers, as another cousin had ordered things on my GM's cards. Carlton Sheets, No Down Payment System, $450 on GM's card. Good grief.

GM wasn't left in soiled BMs, except sometimes by the bad caregivers. I mentioned that because, though I didn't know UTIs were common in the elderly, I knew that bacteria could cause one. More about bad CGs:

Since GM needed 24/7 care, there was always a 2nd/3rd caregiver. Br, a great one, was there throughout and a godsend. The others were a revolving door of bad ones: extremely lazy, unskilled, and worse. P started at the same time as B, the same time as I arrived. P had the habit of calling my GM "mom." My GM's deceased daughter is also the same name, P. It upset GM that P would leave every day. I asked P not to call GM "mom," and P took it personally. The deal breaker was one morning, P screamed at me over my cleaning (still not sure why cleaning was bad; I think P woke up on the wrong side of the bed) and later apologized to me. I called Rockhill and said P had to go. To cover their butts, P and the agency hatched this story that I left things out while cleaning that were a fall hazard.

If I could go back, I would work it out with P. She was the best of all the bad CGs to come, and I'll write more about them in a new post.

Thanks, all, for this opportunity to get this out. It's painful but helpful. 😢

Bad CGs:

After P, Iv was the 2nd CG. She was a 19yo who smoked pot in her car while on the clock and came back in to care for GM completely high and squinting/smiling like a doofus. I found Iv's public tweets were full of talk about smoking weed and getting high. I reported her to the agency. She was replaced with K.

K had been convicted of theft/assault, which requires a waiver per IL licensing for in-home caregivers. I said this to the agency. Nothing was done about K, as now the agency was working to frame me as the problem. Other than the conviction, the issue with K is that she simply didn't do the job of feeding and changing my GM consistently or with any professionalism. My GM would literally hold her poo until it was K's shift to show her displeasure with how K treated her. GM knew what she was doing and told B/me she didn't like K.

Ber was hired as a 3rd caregiver in the home for the sole purpose of getting dirt on me/dad. After I found out she covertly recorded us in the home, my attorney told her that she had to delete the recordings.

It was a proper mess all around. And while I would go back and change many things, ultimately, it was an evil agency causing the issues to avoid a hurdle to their cash. Rockhill lied to my cousin/guardian, and, for whatever reason, he took their side. Looking back, I think the owner was just that slick, and she threw enough against the wall that some of it stuck. She turned him against his uncle and me, even though he should have known better.

One day, I found all the new clothes I had bought for GM packed in trash bags in her room. The agency had told Ber to take her. I called the guardian and the police. The plan was stopped for that day as the police said they had to have an order. After that, a legal petition was filed, full of lies, and signed off by my cousin. To this day, he says he didn't know they were planning to take her. I don't know what to think. He signed it. Surely he read it.

They moved my GM to an assisted living over an hour away. The agency left a sign at the front desk saying that no family was allowed to visit. I got past that a few times, not knowing it was there, and visited my GM. Later, I was shown the sign. I called Dv. He wouldn't answer my calls. GM stopped eating in the AL and would lose 40 lbs in the next month.

She became so bad she was hospitalized, and c-diff was dx'd. I went to see her and was asked by a nurse and hospital security to leave. They were pleasant enough, just doing their jobs, and I was cooperative. They told me that the guardian said me/dad weren't to visit. Bro was with me during the trip and was allowed to visit. To this day, Dv says he didn't do this. I believe him on that one. I think it was the agency.

On discharge, one of her instructions was to take her back home. The agency had K remove the page from her file. I later got it through a records request.

They kept her away for about 45 days. At some point, I got Dv's permission to bring her back. B drove her home, and there is a video of me and B dripping juice into her mouth, and she is swallowing and asking for more. She would die in about two weeks.

...

There's more bad stuff I'm still finding. Many things about the agency seemed sketchy: a fictitious business address, a sales/marketing person getting into the caregiving agency business, and she openly bragged about having my cousin in her pocket. The franchise agency had a documented incentive contract for placement with the AL.

And I'm just grieving it fresh. I haven't thought much about it since then because once GM died, I had nothing to fight for. I became ill in 2012 and then was pretty much bedridden for a few months in 2013; the mold was found and remediated, and I suffered through the next 4-5 years chasing my dad's care needs around and kept us and the house together.

The one thing left to do in this situation is to put all of this online in a blog. It isn't something I'm going to jump into, and I'll get legal advice first, but I feel I must. My video editor roomie says he'll help. lol Idk, guys.. it seems the stars aligned for me to find this content in the right space/time.

I agree with ITRR that evil flourishes because we don't push against it. I don't want the drama, but it found me, and... what do I do now? Can I turn this bad situation into something good in the present?

I'd do it because this isn't an isolated incident, and it'd be worth it if it helped one person out there. And I think it could be cathartic for me. And it would hold Rockhill in some way accountable for what she did to my GM and family. She sowed the distrust that would take years to undo and led me to become a long-standing DYS poster on AC. lol

The dysfunction in my family is much improved since I no longer have to check in with my family for anything related to my dad or the house due to suspicions aroused by Rockhill. Of course, dysfunction was already present in my family, but it worsened considerably due to GM's situation.

The dysfunction with the trust is someone else's problem now. My GM would have never wanted the trust to act as it has, and I feel the situation warrants caution about what can happen once someone becomes incompetent.

Who knows if anyone will ever read/watch it? It'd be for my family and me, mostly.

All of it was avoidable.

I'm no longer drowning in resentment/grief from knowing I tried so hard and lost so much, and all I had around me were suspicious eyes. I still don't get that part of it. I believe my bro, mom, and cousin sometimes feel as if they acted wrongly. That's enough for me to forgive them.

About the potential impact of public posting: I don't believe an unrelated personal blog would jeopardize my future licensing. I will be more careful than I've been here, though. Thank you for your thoughts and concern.

I will sit with these feelings for a while. I'll be ok. I'm too busy being happy in the present to dwell too much on it.

Ali, great to hear you are doing great in the present. That is important.

I want to say something that I have believed for most of my life and has come front and center because of the situation with my mom. People accuse others when no proof exists because they are projecting who and what they are and what they would/have done in similar shoes.

If I am being accused of something I don't have in my heart, I call the accuser out. It's like the cheating spouse, they turn on the faithful one so nobody is questioning their crap and the faithful spouse is usually so busy trying to dispel the lie that they don't see the obvious. People use it because it works.

Great big warm hug!

APS involvement: APS (as the local Catholic Charities arm) was already involved when I got there because my grandmother was taken on a long road trip by a cousin from Illinois to Texas in Feb 2011 and returned with a bruise on her face, probably from resting her head against the seat belt for hours. A CG who actively didn't get along with my dad (I'd spoken to her via phone before I went, and she was hostile about him) had called APS about the bruise, alleging abuse. So my dad was investigated for physical abuse. This was also a big reason I went to check on them.

The APS worker, C, was already doing regular home visits, and I met her soon after I arrived. Over several visits, we talked about the situation. Per her advice, I set my dad up in a suite I made for him in the basement off the main floor. This fixed any issues with bad CGs alleging that my dad was interfering with GM's care. C took my dad to a doctor's appt at the VA, an hour away, and whatever was said during that trip satisfied her that he was not abusing GM.

I knew dad would never hit GM. He's just hard to get along with at times, doesn't understand how a thermostat works [so he set it too high/low, which caused the hostile CG to call the police on him], and often said caregiving fees were too high. To him, $5k a month was a crazy amount of money. On top of that, the CGs were sometimes abrasive and lazy, and he knew previous ones had stolen things. He resented some of them for being in his home but got along very well with others. There was a long-term one, S, that he got along well with in the years before this situation blew up. She had moved on at some point around the same time as GM came home with a bruise.

The APS worker, C, came to agree that my dad wasn't physically or financially abusive. She and GM's primary doc advised the agency not to remove my GM from her home when we found out they were planning to do this, but the agency removed her against that advice. That's when APS went from a passive investigation about possible abuse and keeping an eye on the situation to working with me against the agency.

But the agency didn't act alone, which prevented me from holding them legally accountable. The trust went along with whatever they said, but it was Dv/guardian who made it all possible. APS and PC doc gave written recommendations to help me obtain guardianship. GM died before I could get it.

I physically/mentally crashed in the six months after that due to different things, and the guilt, grief, and anger over my GM's death added to it.

Finding all of this again in vivid detail is a recipe for emotional chaos. It's a nice winter day, sunny and 43F here. I'm going for a walk in the big park nearby to shift gears. I wish I had never gotten involved because it cost me so much and deeply hurt me, yet I am thankful I got that time with GM before she died. I know I made a big difference in her happiness in those last months; she was my lovebug, my treasure, and we had a special, sweet connection.

Whew-kay, my freak-out is over. Arguably, I'd be much better off if I hadn't found the old cache of early caregiving stuff. On the other hand, it gives me a chance to open an old wound and heal it better than before. Maybe?

I will take time and process my feelings before I act on them. I love you guys just for being here. I don't know where I could go if I couldn't vent this heartache to other caregivers. I didn't want to keep it all in; barf it up and get it over with. "A sorrow shared is a sorrow halved." This hit hard. "Triggered" is definitely the right word.

In my experience sometimes opening old wounds helps to clean them out and heal better. I agree that "A sorrow shared is a sorrow halved." Be kind to yourself now - this has taken some energy to go through. Give yourself time to regroup. I am so sorry that you went through such a traumatic time with your grandma and the agency, and the trust, and with your dad. I know he wasn't easy to deal with. Thank goodness those days are over!!!. Breathe deep! ((((((hugs)))))

My DH and I say “A problem shared is a problem doubled”. OK to do it for a specific purpose. Counterproductive just to mull over it.

Ali,
You can sleep good tonight.
You shared, and will get no judgment here.
Sorry that was so awful for you.

I've been in absolute shock at rediscovering these details, seeing myself and GM together in that time, and at how much it grabbed me in the present. I've felt very peaceful for the second half of today. It's only up from here. I didn't mean to spread my grief and anger. Thanks for the space to get that out. 💗🙏

I think I can objectively say that I'm not ruminating too much on the situation since I haven't brought up my GM's dysfunctional death circumstances a single time in the decade I've been on AC. (I didn't bring it up like *this.* I've alluded to it vaguely before.)

Not defensive, and just processing. Tomorrow's a new day.

@Ali

If your grandmother didn't mind 'P' the caregiver calling her mom you certainly shouldn't have had a problem with it.
If you were living in your grandmother's house why did she need round-the-clock caregivers covering 24 hours? Or why did your cousin living in another state have the POA if you were right in the same house? Is your cousin the son or daughter?
Bottom line. You decided to knit-pick about a caregiver who worked well with their client, your grandmother. Even though she apologized for being short-tempered with you it wasn't enough. You escalated it further by calling her agency and getting her fired.
It backfired and bit you in the a$$. Only the one who suffered for it wasn't you, it was your grandmother.
You are not traumatized or have PTSD, You feel guilty about what happened to your grandmother and are looking for scapegoats to blame for all of it. There's plenty of blame to go around and some of it belongs to you. Take your share and own it. Then you can come to terms and get past it.
I believe everything you said about the care agency and their workers. It can be a shady business. An honest care agency is the exception rather than the rule for sure.
You could have done more to help your grandmother and didn't. You lived in her house.

Whoa, burnt. I think that is a bit harsh. You weren't there. Neither was I am not going to argue with you or anyone about it, just saying...

Burnt, it did upset my GM a lot. She would get very agitated. It was confusing to her that a woman named P***y called her "mom" because GM's daughter's name was P***y. When P***y left, GM would cry and ask why. The other CG felt P was unprofessional in this and other things. It wasn't just me.

I acknowledged in my comments that I should have worked it out with P. I was green and thought that CGs should always be professional. Trust me; my bar was lowered much, much further for CGs in the next couple of months.

It'd be more accurate to say that I have a lot of regrets rather than guilt. I gave everything to that situation to get good care for her. I was never cross with anyone. I handled it calmly when P screamed at me but called the agency. I didn't think it was appropriate.

I'm most definitely traumatized by the situation. I was then, and I was again revisiting it. Idk what else to say about that. That's the most off-base projection. I have deeply mourned the caregiving years, for years. I'm done with that now, but seeing my GM and me so happy together in old videos broke my heart again.

I wasn't living in her house. I slept on a couch in the dirty basement and fixed up the rooms for GM, dad, and the CGs. The CGs - all of them - were grateful for the cleanup work. I made their overnight room so nice. I got them a proper working washer and other things to make their jobs easier. I had a rental car and a suitcase, and I worked tirelessly, endlessly to clean the filthy, hoarded house up. Many days I lined the front walkway with bags and boxes for trash pickup. That was my job.

The CGs cared for GM, though I stepped in a lot to help by getting the foods she liked and ointments for her rashes, etc. I bought nail tools to help with grooming. I cut her hair.

But your response was typical, I think. No one could understand, I guess, why I would come there and stay and work so much if I didn't intend to live there. I think the rumor was I was trying to get the house or something. I couldn't have done that even if I tried, as it was in the trust for my dad's benefit. My bf was a very wealthy man, and I had no money concerns at that time in my life. I certainly didn't want to trade a fancy condo above the LA marina for a run-down house in a Midwest suburb.

Yeah, you're off base. But I'm not upset. You don't get it, but that was the common feeling of those around me. Suspicious. Blaming. For what? For doing the work everyone knew needed to be done in the house, but no one else wanted to do? For insisting that my dad was considered as part of the package with GM's care needs, as she clearly wanted? My family knew this about my GM and dad. She protected him and provided for his care until he died in her trust. The agency wanted him out. I felt I couldn't let that happen and worked with APS to prevent it. If APS was satisfied with my efforts, why aren't you? You have no clue, dear.

My cousin Dv (GM's grandchild) got pro se guardianship after Db died in Feb 2011. My dad suggested him, and I was unaware he had taken over until later. I asked my dad why he didn't recommend one of his children. He's not all there in his head. I was the one he called when he started having problems, though. I called Dv, and we talked about the situation. He knew I was going and was more than agreeable about that.

I was fine with Dv being the guardian because we were on good terms. I didn't mind going to do the grunt work, and he would remain guardian when I returned to California. He lived in the neighboring state; I lived on the west coast.

You're misunderstanding, but that's ok. I appreciate your thoughts over the past two days.

@golden,

I respect you and I'm not looking to argue either. Too many times have I seen a scenario exactly like Ali's. What it usually ends up being is that someone feels guilty about what they didn't do for their LO so they spoon the blame around on everyone else.
I'm not saying Ali did not have a hard time. Her grandmother had a harder time though.
I'm sorry but I really don't believe that the criminal office manager prevented the grandmother from getting medical attention even though her granddaughter (Ali) lived in the house AND was demanding it.

Everyone around the situation was happy to see the cleanup. The trust officer, cousins/family said it should have been done years ago. The trust officer smiled when he saw the house and said he couldn't believe what I had done with it. Among other things, I had taken up moldy basement carpet from the '60s. That was likely the start of my mold illness.

The house was nasty and cluttered, with random stuff from bottom to top everywhere, and within a couple of months, I had it clean and decently organized. I WORKED. So hard. Multiple neighbors thanked me for fixing the neglected yard/trees. GM wouldn't want to have the by-far worst house around; I did it for her.

The agency owner was the one who started the suspicions about my taking the house and used it to manipulate Dv. And to be fair, no one understood why I would I do all this if I didn't intend to benefit from it.

The plan was to clean up the house, set things in order with GM's care, and leave. When I saw how bad things could get when the trust filed to evict my dad - against APS recommendations, as they were fully satisfied he was not abusive and no threat - I felt I had to stay a little longer and protect him. He was a vulnerable elder, too. My GM was 103 when she died; my dad was in his late 70s, and everyone knew he was special needs. I'll never understand why they didn't work to accommodate those needs and instead wanted him out. To go where? He had lived in that house for decades; it was his home. GM wanted him there and was clear about that in her trust.

If I could go back to 2012, I would leave after my GM died and let the trust sort out my dad's needs. He was no longer in danger of being evicted and was now the beneficiary. The CGs were out of the house, so there were no issues there.

But he had bad skin cancer on his face. The docs wouldn't do Mohs, and I felt that was a much better procedure for him. I stayed to help get him Mohs and succeeded after a lot of advocating on his behalf. Then he couldn't urinate after being under anesthesia. Common enough, I later learned. And he had a scarred bladder for whatever reason. So I stayed to get him treatment for that. The urinary issues weren't resolved for years and several surgeries later. He got sepsis at some point due to a home nurse inserting the cath incorrectly and was hospitalized for two weeks. He was down to 110 lbs and needed a g-tube. He couldn't be relied on to use the catheter or tube properly.

A bad Toxic Mold infestation was found in 2013 after I kept saying something was wrong. My dad was having mini-strokes, and I was all-around so sick. We both got somewhat better after the mold was remediated. It was in the basement - he and I were the only ones who ever stayed in the basement, so I think that's why it didn't affect others as much. There is a link between mold and dementias, though. So who knows if it affected my GM's cognitive ability after living in that house for so long? But that exposure clouded my judgment. I trudged on day after day, taking it one day at a time during those years.

I was traumatized. By ALL of it. What I lost. What I endured. Everyone I had to fight to get proper care for both dad and GM. Losing my health. I look back at these videos and don't recognize who I was back then. She was strong and had never known the kind of chaos and pain I was about to experience for the next six years.

I didn't need to write all this, but I want to right now to get it out. There it is: The nightmare of my caregiving years. How could I not be traumatized? It is the pivotal experience of my life. Everything in my life is Before and After I went there to that house to try to help.

Eventually, I got my dad stable - no cath, no tube, and a good weight - and got him into a HUD IL closer to other family and walked away broke, broken, and homeless. Today I have my place, a new degree, and try to only look forward.

Welp, Burnt. It happened. I suspected GM had UTI, which was confirmed about two weeks later when she went for treatment for something else. The office manager scoffed when CG B said I wanted her taken for testing. I was "being dramatic." Those are the words she used. And since I wasn't the guardian, I had no say.

Later that manager would steal all the funds in the agency account. To say the agency had poor judgment in hiring is an understatement.

My GM loved my being there. I would sit down to talk with her daily. We had back-and-forth conversations, and I learned a lot about her childhood. I had her dancing in the living room one day, something no one else thought was even possible. She was all smiles and happier than she had been in decades after being neglected and wasting away in that house.

I wasn't the reason she suffered. I brought her joy and worked to do what I knew she would have wanted for her house and son. I gave her and my dad dignity, which was lacking. The local police/CG agencies called her home the Looney Home, a play on words of her last name. She would never have wanted that. She was a good woman who led the local Seniors club, was active in her church, and volunteered in local charities/hospitals. She didn't deserve the disdain from others, and it was classless for local agencies to perceive her and my dad like that.

Others caused her suffering, not me. But I was naive and, I guess, too demanding. Is it too demanding to insist on good care? You said this was what the family should do in another comment. Did I misunderstand?

Hindsight is 20/20 is more than just a cliche, can any of us can look back without seeing the mistakes we made, or where someone was obviously pulling the wool over our eyes, or when things could have been different if only we had said or done something sooner... or perhaps not done something at all? The thing is we can only act on the information we have available to us at the time and within the reality of the person we were then, shoulda coulda woulda thoughts are just lies we tell to ourselves to our own detriment.

WOW, Burnt! You are on a tear this afternoon.