From Colorado

I hope my story ‘fits in’ with others told here, because I WAS the Guardian.  My spouse was left incapacitated over 12 years ago.  After inpatient rehab in a specialized facility, he came home with me where I cared for him with very little professional help (I wanted the privacy and was young enough to do it).  I cared for him and our small children for 5 years, all the while pursuing anything that might improve his condition, even if it was a great hardship on myself and our kids, and that was often.  I didn’t mind it then, and don’t regret it now.  My mother-in-law, from the very first day, couldn’t accept her son’s permanent, devastating brain injury.  Nothing I did over those years I gave up everything to care for him was enough.  I did everything she asked, I brought in every type of specialist, therapist, healers and anything else she wanted.  I dared not say no.  But she said those were years not spent caring for him, but “keeping him a prisoner in his own home.”  Still to this day, she thinks something can “make him well,” and that I’ve “kept him” from whatever that might’ve been.

Two years after his injury, we got a settlement.  It sounds like a lot of money, and it did to me, but it was set up to be paid out in annuity payments; a monthly check. That only made things worse.  His mother flew into a grief-stricken rage at the thought that our kids and I would also be taken care of financially with “his” money.  I dedicated three more years of my life to him in order to keep him home. That was three years after I could have placed him in a nursing home because we’d “gotten that money.” Three MORE years. We all rarely left the house for many reasons. She hated that my family was there for us, and his wasn’t, so she showed her “love” for him by badgering me constantly about pursuing this or that because there was money to pay for it. “His” money. The fact that this was a family support trust fund never did sink into her brain.  After 10 years, it was impossible to deny the mountain of documentation I’d accrued that his condition was not going to improve.  She came at me through lawyers and social services “anonymously.”  All claims of sub-standard care were determined unfounded and my husband well cared for.

From the day of his accident, I’d acted as my husband’s Guardian, and once the trust was created, I acted as Co-Trustee with a corporate bank.  I was not allowed to just ‘ask’ for money, my requests had to be approved by a committee.  My husband’s medical needs have always been paid 100% by his military benefits.  The only out of pocket expenses that would be incurred for him would be for “extras” from some massage therapy to blankets and pajamas.  There is only so much you can supply for someone in a near vegetative state, but his mother saw it differently.

When her efforts were fruitless for over ten years, she finally wrote a letter to the probate judge who gave me Guardianship and approved the set up of the trust, also appointing me co-trustee.  She told this judge that I’d been neglecting my husband, not giving him the level of care he deserved (or that his money could and should pay for), and was “wasting away” in a nursing home while his wife was living “a life of luxury.” The settlement awarded me my own personal monies, just so that’s clear.  That was almost 4 years ago.  That judge, who’d recently been ‘slapped on the wrist’ for being lax in keeping up with Guardians’ abuse, strangely enough, obviously wasn’t going to ignore this letter.  That’s when the nightmare began.

I’d taken excellent care of my husband, personally and as manager of his care.  This is all very well documented.  Settlement funds were invested and spent appropriately, as outlined in the agreement.  This, too, is well documented as I insisted on it.  I didn’t want anyone to question any financial decisions I’d made or be accused of exactly what I’m being accused of today.  I thought that I’d both protected and proven myself, and was confident that this matter would be addressed and quickly dismissed by the judge as soon as she reviewed the years’ worth of documentation I had, one evaluation after another all stating the permanence of his injury, and the exemplary level of his care and condition.  I was stunned when not only did the judge not dismiss these allegations, but brought in a Guardian ad Litem, who brought in a care manager, who added her attorney to the team.  All of them, as well as my own attorney were being paid out of this trust account, which had more than doubled with ten years’ of investment growth.  With every day came less and less authority I had as my husband’s Guardian.  The opinions of the Guardian ad Litem and care manager were supportive at first, but after meetings and phone calls with my mother in law, without my knowledge or participation, which I was entitled to, they suddenly started sounding exactly like her.

I was quickly out-numbered, and as the picture being painted of “the wife who has control of the money” got uglier and uglier, everything spiraled down straight to hell. Not once in these  4 years has that judge supported me when I tried to submit all the information she could possibly need to see things clearly.  My documentation, provided by many different medical professionals, were ignored, while she allowed my mother in law to bring in a doctor to “re-evaluate” my husband. A research doctor for whom my husband is a perfect case study, and with whom she has a professional and personal relationship.  Needless to say, his “eval” recommended “therapy” and a particular surgery I’d long since investigated, and didn’t pursue, in agreement with a specialist at that time.  As Guardian, I declined this list of “do-overs” which had been done over and over again over the years, at his mother’s request.  The judge not only intervened and ordered that all his “recommendations” be implemented, but that the trust was to pay his $19,000 fee for “assessing” my husband for a total of less than 8 hours, including time that he was sleeping.

Since then, hundreds of thousands of dollars have been spent, mostly on legal and “court-appointed professionals’ fees.  My mother in law’s attacks were relentless and my attorney was overwhelmed with multiple, daily demands for action or information.  Fees soared.  Over those years, the most horrific, disgusting and devastating lies have been told to the court.  I was advised not to defend myself, not to get so emotional with a judge that had shown no support of me at all.  That infuriated me.  Finally, I was told that the writing on the wall was that my Guardianship would be attacked, and then my CoTrustee position.  I was advised to resign from both, specifically to step out of the line of fire from my mother in law, and “let her deal with a court appointed one.”  Little did I know, I gave away my life as I knew it that day.

That Guardian moved my husband into a new nursing home, with a new doctor, cared for by new staff, under the ultimate ‘direction’ of the research doctor.  The only doctors and specialists that are allowed to see my husband are in his ‘group.’  Though this is an “excellent” facility, she ordered that private staff be brought IN, to care for him at his own expense.  (Remember, all his care, including the facility costs, are covered 100%).  The Guardian’s fees, these caregiver’s fees, and her attorney’s fees, on top of the privately paid therapist that provides therapy that is included in this facility’s care already, are mind boggling.  On a more personal note, this Guardian doesn’t have to tell me ANYTHING about my husband’s care.  A call to let me know he’d spent the previous 18 hours in the ER was a “courtesy call.”  I can’t ask nurses about his meds, or therapists about his progress (or lack thereof), or expect to know where he is, what’s being done to/for him, or if his health deteriorates.  I am “assigned” two visits a week.  If I can’t get there for any reason, the private care shifts are “the priority” and my visits are simply “missed visits.”  If I go during a shift, the CNA is not to leave “his patient.”  I feel like my husband has a body guard and he’s being protected from ME!

As soon as the new Guardian was appointed, the judge ordered no funds to be released from the trust to anyone other than the Guardian for fees and “recommended care.”  That meant that half of our income was cut immediately, and that my attorney wasn’t to be paid.  I couldn’t get a penny on behalf of my children, even though they were legally entitled.  That was over a year ago.  Approximately $150,000 has poured out of that trust fund, (more than has been spent over the ten years I was a trustee), which is now under a conservatorship which they control completely while my debt to lawyers and hospitals (due to a horribly timed, huge medical bill) among others, mounted due to the slash in our income. Because the Guardian says all of this privately paid “care” is “in his best interest” (which can literally mean anything), and it is costing all income and sometimes principle funds to pay, I’m being told that our family trust fund is now unavailable to us and is “needed to cover medical expenses” for my husband.  He has no medical expenses.  His care is fully covered.  The trust has been depleted now to a critical level, and to less than half of what it was originally worth.  A decade’s worth of savings and growth, nearly gone in one year.  The Guardian arranged that surgery, with the research doctor of course.  He has since had several bouts of pneumonia, mysterious fevers, digestive issues and seizures. His medical records prove that he has been astonishingly well and healthy under the years of my care, and never had these issues before.

I am desparate for the judge to hear my side, to read my documentation, but have not had the opportunity.  All the judge hears is “it’s in his best interest” from the Guardian, who has yet to provide one single page of documentation by any professional whatsoever to support her opinion.  Oh, well, as long as the research doctor backs her up with HIS opinion, and he too has nothing to contribute in fact or documentation, the judge gives the green light. The judge herself even brought in an ethics committee for their opinion.  After weeks of investigation, they supported me completely.  My mother in law told the judge that they didn’t know what they were talking about and needed to be told to reconsider.  They expanded their investigation, and again supported me 100% and recommended therapy for my mother in law.  The judge never mentioned it again, and their opinion changed nothing.

The obvious common denominator in all of our stories is money.  Money and a family member who wants that money.  I, too, would think myself a despicable person if all I knew about me was what was submitted to the court.  I protected and cared for my family.  I provided for all of them and at great personal expense. I wanted money to be there if any one of us needed it in the future.  For emergencies, for any new technology for my husband, anything.  It’s gone now and I have little faith the judge will acknowledge this crime, as she’s a party to it, much less do anything about it.  Yesterday, I found out that my oldest child’s only acknowledgement of the loss of his father, which is monetary and intended for a college fund, will now be taken into the Conservatorship, which may or may not decide that the funds need to be spent on the astronimical “medical” expenses “recommended” by the Guardian, and not his education.  Unbelievable.  More unbelievable is that his grandmother is well aware of this, and is cheering her “victory.”  Money brings out the worst in people, but to toot my own horn, I was determined not to let that happen to me.  I’m the same person I was when I met my husband as a teenager, over 25 years ago.  To his mother, I’m a cruel, selfish, money hungry *itch.  As much as I’ve tried not to, but have indeed grown to hate her, her words hurt me deeply, and her actions leave me stunned and speechless.  I take a little comfort in knowing that her son would literally, methodically tear her limb from limb if he knew what she’s done.

Big Question:  If I wasn’t going to “inherit” this trust fund, and didn’t have “ATM-like” access to it until he died, why would I have spent so many years making sure his care was top notch, and for 12 years?  I would certainly have put it to good use when I was ten years younger!  Who is willing to wait that long for a “windfall” when they’re in complete control of the health of the one leaving behind the funds?

This may be too long to include on your website, but thank you for the opportunity.  Now that I see how many platforms there are for addressing this nationwide crime, I’ll be telling my story as often as I can.


Stories of Denial
  • Pgensel 1

    I hope you and your children’s lives prospered after this terrible situation one person made for you – notably your mother-in-law.