Share Your Story

You’re not alone. Please share your story here so that others can benefit from your experiences. We can help each other heal and can take action together.

* Please note that we do not share your information with other organizations. We are here to support you and we may reach out to you to learn more about your story. Please let us know immediately via email if you are contacted by groups other than Kasem Cares as a result of your communication with us.  

Please leave your story and watch other people tell their stories at the Kasem Cares conference.

    Khadi shared a story:

    In 2009 my former son in law, Donald, was placed on hospice due to liver cancer, although, at the time laser treatment was available for lesions on his liver, he was rushed onto hospice. (Since then the hospice company has been found guilty of placing patients on hospice before their eligible time) and therefore obstructing possible curative measures. Hospice, naturally, puts an end to curative measures. Prior to that in 2007-08 his children noticed that he would get sick each time he would eat food cooked by his wife. They also noticed bottles of medications that were brought home by his hospice wife, an RN. When they asked about the people’s names on the bottles, none of whom they recognized, the teenaged children by his first wife were packed off and sent back to their mother. It had become known that this new wife had also changed insurance policies diverting funds from the children to herself. Further, while on hospice at home, the wife was seen to have injected Donald with pink fluid of some kind (later identified by a court expert hematologist as anti-freeze). The children were not ever allowed back in the home to see their father, and the deed to the house had been changed to the new wife taking it out of his ownership and therefore out of his control as to who could come and who couldn’t. Up until and upon his death the children were barred from not only seeing their father, but also from attending his memorial service and repast and had the police called on them when they tried to attend. Family members lived under fear that they would be thrown out and barred from seeing Donald in his last weeks before she gave him the final shot. Worse, these children now adult have never been able to obtain their father’s hospice records because the wife/widow has the power of attorney and even though she is now married over 10 years, under law she is still his next of kin, of which there should be a time limit if the spouse is remarried. These children suffered a trauma over this from which they are still suffering emotionally.

    Barb shared a story:

    My Mom is a current victim of Guardianship Conservatorship abuse in Boise Idaho. 3 attorneys and Guardian have put her in ALF. Over medicating her. Sold her home. Neglecting her eye health. I told on them and now they are targeting me. Won’t allow my mom to leave facility in Meridian Idaho to move closer to me. I was told today they aren’t going to let her move to the new ALF I found because “they hate me”.
    No one will help. I begged Idaho Legal Aid to help me. Nope.
    I turned all this and more in to Elder Abuse and they won’t hell.
    . Serenity assisted living hangs up on us when we call. Sometimes say she W doesn’t want to speak to us.
    We are being prevented from speaking to our Mom. We are 12 hour away. We wanted to move her to North Idaho and they sabotage it. Courts in Boise don’t care. They are spending away my Mom’s estate. No one will help me. Now this “Squad” is attacking me.

    This squad of attorneys are all conflict of interests too. Two work at same lawfirm. Other went to school with one. The two at same lawfirm… One is other’s boss.

    I cried all day. My poor poor mom.

    Michael shared a story:

    (There is a LOT of testimony taken waaayout of context AND documents AND procedures put in the Court record which were and ARE quite exaggerated truths…AND…)

    I love my mother beyond measure. I knew it would be a huge undertaking and a heavy responsibility to care of her at home; I did not take this lightly. Through training and research, mostly at and with the staff and facilities she was at prior, I felt confident and competent to provide care for her.

    At home, she has been well fed, medicated, bathed, turned, encouraged to move, regaining motor and cognitive skills to a degree that was humbling and rewarding to observe. I did have and will continue to have assistance from doctors, nurses, therapists, social workers and aides, both in the home and with outpatient appointments.

    I’ve been my mother’s guardian for nearly four years alongside my sister who was sole guardian for fifteen years prior to that. My mother has been living with me for five months. I have provided for her in every way possible with exceptional care. My mom does need assistance with a lot of things. I was able to provide for her on every level with the assistance of private pay caregivers, home health agencies, and some financial support from family. She had a seizure on the morning of April 21st. I called an ambulance, and the paramedics made observations about my behaviour and the way they found my mom. They forwarded these concerns to adult protective service, who in turn gave the go-ahead for an attorney from the hospital my mom went to to file an emergency petition for third party guardianship. This hearing took place, and effectively my sister and I were removed as guardians, albeit temporarily. Michigan guardian services is now The Guardian for my mom. I am more concerned about her placement. She has been put back into an institutionalised setting similar to the type of environment and place that I’ve been able to get her out of. At home, we were very successful with actually helping her recover, rehabilitate, feel safe, and be loved.

    Her current provider states that she has epilepsy when previous doctors have confirmed her seizure disorder came about from medications, as did her Parkinsonianism. She has no previous medical history following her, and I’ve been unsuccessful thus far with providing correct information to both the temporary guardian and the facility.

    I’ve been blessed with many friends in my time thus far, though my mom is truly my best friend. I made a home for her, providing for her in many ways…often saying I’m not married, but I settled down for the right girl.

    My objection was not acknowledged nor put into the court record, though I submitted the way I was instructed by a court clerk due to the short notice:

    I hereby Object to the petition for third party guardianship regarding my mother, Doreen (Berg) Lipson, case # 2001-277, 029-GA.

    There has been no substantiated evidence to show my care for her at home has exposed to her a risk of injury, illness, and/or death. Her needs have been exceedingly met under my care with assistance from outpatient treatments and appointments, home health agencies, private caregivers, and many professionals who have regularly seen her body, her cleanliness, her demeanor, the home in which we live, alongside how she is with me and I am with her regarding all aspects of her care. Her well being from states of mental, physical, emotional, and spiritual have improved beyond measure being with me…whereas: she has now been able to speak her mind, make some informed decisions, sing and talk, express her feelings, medicated healthfully, approved by many medical personnel involved in her care….able to eat well, and further been able to feed herself, holding cutlery, cups, regaining further cognitive and motor skills…stretching and exercising every day…able to move otherwise contracted body parts, gaining strength of all varieties, all the while being loved, feeling loved, cleaned, for both incontinence and hygiene, turned, and maintained in a myriad many ways.

    I did not neglect, abuse nor subject her to anything so grossly negative to allow for her to be removed from her private residence where there is plenty of corroborating proof in her care by me, let alone to have her guardianship modified nor changed to the effect of disrupting her fragile state.

    She has truly recovered, rehabilitated, and thrived with me. We have a lot more help on the horizon, as well. I am very concerned that she will be placed back into an institutionalized situation which will compromise the incredible strides my mom has made at this point in her life.

    There is no good, just cause to disrupt her living situation and guardianship based on exaggerated claims regarding my care for her with unfounded accusations.

    Please, for the true best interest of my sweet mama: consider this objection.




    Beyond the plethora of video and audio documentation I have of her care with and by me at home, I have a whole lot of people who tell me they will be willing to provide testimony and statements…

    I do not have all the specific numbers since my previous phone did not have contacts backed up properly ….so, now, it may be tough to get info without release forms signed, if they allow it..

    Pertinent Timeline (still not detailed enough) :

    September 13 2020-my mom had an aspiration episode and a seizure while housed at the MarvinBettyDanto facility in WestBloomfield…sending her to HenryFord Hospital for three weeks then sending her to Hospices intake even after recovering far better than her prior baseline and surely not needing the PEG tube which was ordered upon admission…only having hospice designation from a Parkinson diagnosis which had been previously and since been confirmed as Parkinsonianism.

    …Nov. 24 2020- mom discharged from Villa Park Ridge to my care at home 765 Waterman

    APS was alerted on this day to concerns for her safety, presumably based on conversations regarding her condition, care, alongside their obligations to follow Medicaid rules I had with high personnel at Arbor Hospice (she was in the intake in Saline there for three weeks prior to a month spent at Villa in Ypsilanti); there was a police call to the Intake on me as I was being loud in the room with my mom, which doesn’t help my cause, though it may not have been completely justified, it was misinterpreted as aggression. I feel this is not an excuse, as it does bear some explanation.

    …the initial Arbor nurse, Chris Heikka had agreed that since we didn’t want morphine, we didn’t need to have it.

    …I explained a possible theory of multiple personalities and referenced an exorcism in relation to that; NOT the seizures; since being prescribed Keppra on January 20, I had administered it to her as prescribed.

    …I had inquired with Arbor many times about my mom’s desires for plan of care, respite, Durable Medical Equipment and Supplies…and, informed them I was going to look at other agencies.

    …I had interviewed several, one ready to take her, but they and all the others said that she was a great candidate for home health since Hospice was not the right move for her at that time.

    …I had given my mom psilocybin after discussing and getting approval with Hospice Doctor and Villa Nurse Practitioner Christine Johnson. I discontinued this when the U-M neurologist stated this may not be a good fit for someone with a history of mental issues.

    …Hospice discharged mom claiming I had already signed up with a new company, February 21.

    …I had called many times before AND after to plead with them to remove the faulty catheter they put in mere days prior…since no coverage existed for a nurse or doctor due to Medicaid not releasing her from Hospice diagnosis for another eleven days.

    ……on April 21, I explained to a medical assistant outside the ER that I hadn’t slept much the day prior and that, though she missed two doses of Keppra in the previous week, I doubled the dose , as directed by doctor.

    …I also stated that I had given four measured syringes of liquid Arivan during the seizure episode, as directed.

    …the blood work from the ER will show Keppra!

    …the bedsheet will show sweat and prune juice!!

    …the tempurpaedic mattress she was on was stained, from other hired agency aides who had left her wet; I had dried and sanitized that mattress and she was free from even a speck of feces.

    …I provided complete, accurate information to APS. I know they didn’t come to the home on April 21st, as my sister got a call from them when my mom was in the ambulance. They would have found the house doors open, with my box of money, sunglasses and cell phone still sitting outside the front door, as I left them in the rush to follow behind the ambulance.

    …I told the paramedics on scene that I had her medications memorized and that there was already an updated chart with medical history in the file at the hospital. I did behave erratic, though with my mom having a seizure, me moving stuff out of the way for the paramedics to come in, getting the oxygen tank, putting a bag together of my mom’s belongings, starting my van, then being told I was unable to ride with nor visit with her due to covid spike, regardless of her being unresponsive with me being her support, son, caregiver and guardian…I was surely not so hysterical to have police called…as they arrived as a medical assist. Further, I said to my mom during the 911 call that she wouldn’t get, as she puts it, “toy-arrrested.”

    ..Dr. Adam Marks, Arbor Hospice discontinued seizure medication upon discharge from Hospice Intake to Villa Park Ridge, October 21. I asked for her to be on something for the disorder which “officially” began on September 13.

    fun times MUST return

    …I did indeed follow their covid protocol, though I was often told differing measures to take while visiting, as some staff were unclear alongside the government rescinding and changing their guidelines during this time.

    …Mom came to live with me on November 24.

    …Nov. 27- I was happy to receive a call from APS informing me that they were called to check in on me and my mom, as I invited them to come to the home and truly investigate the care for my mom.

    …Nov.‘20—-Jan.’21-I met and provided for ALL of the needs of my mom, with the limited assistance of a home health aide from the hospice, private pay caregivers, and visits from various hospice nurses and staff.

    (…Dec. 21-my mom requested a female charge nurse, so we requested this and started with Lori RN, and no longer Christopher Heikka RN)

    …Jan.20- my mom had a major seizure at home (she was provided absolutely no seizure meds even when I inquired and requested something since the first episode in September and I called for an ambulance. Hours prior to this, I knew something was wrong with her breathing…and there was emesis…I made calls to the Hospice agency since I was instructed not to call 911…i was told to keep an eye on her…when the seizure occurred, hospice did actually arrive and still did not want An ambulance since there was an insurance conflict…when they found she would be going to the hospital for a different reason than being on hospice, they “allowed” it.

    …Jan. 23- my mom returned home with me with a prescription for Keppra seizure medication which I administered to her as directed, 1000mg daily

    …Approx. Feb.16-the hospice company, upon my inquiry, inserted a catheter for a few days…so that she could sleep a little more uninterrupted without waking up wet and that I could also sleep some more too. I realized it was leaking upon the first day…and got an on-call nurse to remove and replace it…following day had a community paramedic arrive to determine that it was low on fluid and inserted more saline into it…the nurse who wound up coming with APS claimed she was going to remove the catheter upon my request and concern…but stated she was unable to since she didn’t feel she was well equipped to enter the tube into my mom due to her contractures…while I was able to work with my mom to help her relax her legs, with the assistance of the previous on-call nurse…

    …approx. Feb 17- Rita Sharma APS and Lori from Arbor (unannounced..as I found out this day that they are the ones who called APS) arrive at the home for an hour visit…accusing me of not providing medications as directed…wherein there was nothing from them I had been given for my mom which I was not providing for her. I believe the medication in question was morphine which, upon discussion with the previous nurse, we did not receive on our “comfort pack.” I was providing Arnica and Cannabis for pain, and it was approved by the previous nurse (since no doctor was ever available through hospice)…and those were absolutely working for my mom.

    …Feb. 19— Arbor tells APS who tells me that they want to remove us as clients due to indifferences so I was given the suggestion of finding another hospice company; I called and interviewed several and was told by most that she had recovered so well, didn’t require hospice, and that home health through medicaid would be a better fit. Arbor dropped my mom anyhow claiming that I had signed up with another company…which I did set up a future interview being assured we were still covered by arbor hospice…and they had no proof of their claim I had switched providers. Arbor then told APS they are afraid to bring staff to the house….not once consulting the many staff who entered the home and met with us, let alone the aide who saw my mom, her body, the home, my care for her, how my mom was improving on so many levels, aside from having each one of her needs met beyond what more likely could and would be done in any facility
    with Medicaid limitations, as well as staffing issues.

    …Feb. 21-still knowing there was something wrong with the catheter, I pleaded with Arbor to come and remove the catheter..since medicaid had her listed still as hospice, no doctor possible or any way to get another agency. We were also counting on a nurse on call to come and assist with suppositories (which I had at the home) when there hadn’t been a bowel movement in three days…I was told to call emergency…but I reached out again to community paramedic who sent an ambulance…my mom was waking up when they arrived with a low blood pressure so EMS stated they were obligated to take her…even when her BP rose to normal levels before getting in the ambulance; she was admitted for constipation…which was an 18 hour admission…with me changing her, cleaning her and reporting to the ER staff….then discharged back home.

    …approx. March 9—after knowing something was really wrong with the catheter and wanting it removed with no one able to touch it…even after we had signed up with PCP and a variety of home health agencies, I called for ambulance when I saw the motor skills and cognitive gains she had improved on over the time together and off the psych pills had started to drastically decline…I had suspected UTI for over two weeks…and this is what she had…she spent nearly three weeks at U-M where there was question brought up about my ability to care for her at home…they provided antibiotics …and even though a discharge seemed feasible after the infection cleared up, they sent her home to me with IV antibiotics to be administered at home…with follow up from Michigan Medicine Visiting Nurses…negating our previous home health agency…and disallowing a pending one; it was determined her infection had cleared…we did not get all of the visitis we were scheduled to have…but Social Work, Nurses, Aides, all had a different story to me regarding my mom’s care than what was represented in the courtroom. Their stopping of services was stated that Elara Home Health was ready to take over…which didn’t get completed either….

    …Approx. March 22-April 21-mom was with me, again having all of her needs exceedingly met, accompanied by the assistance of private caregivers and personel…while I continued to reach out for help, aid, and knowledge of other professionals…meanwhile continuously being forthright and honest with every agency and staff interested in my mom’s care…including the APS.

    ….incidentally, I had inquired with many companies for help and programs of a variety of types, including Area Agency on Aging…who were with us from the beginning of care at home…receiving no help until two workers show up in early April unequipped and unprepared to provide incontinence care and feminine hygiene even when they were represented as folks that would be able and willing to do these two tasks of priority for my ma. Area Agency claims we were given AND received 23 hours a day of home health care; we received about 18 hours total over a two week period and when I called the contracted company about the abilities and expectations of the workers as to if they were to be merely sitters or actual givers of care, the company dropped our case…all going back to APS now claiming that we could not work with Area Agency even after all the care and staff they provided.

    I know this is not concise, but it is fairly chronological. There is truly so much more as far as details; there truly has been no thorough investigation regarding my mom, her care by me at home, nor the home itself.
    feeding eating holding a spoon

    I do not feel she will be improving in a facility…as she was on many fronts with me at home. I am still very concerned about her overall well being, especially now that it appears she will be moved to a supposed rehab institution.

    I am in a continued state of getting and doing better, and I know where many of my deficits lay: I’m often sarcastic, obnoxious, emotional, uncivilized, rude, and otherwise difficult to work with because of these attributes. At times, I do have a disconnect from being calm and rational with becoming unruly. I do, like all folks, have many very positive qualities and learned to exhibit that positivity more and more, while being the opposite of violent, abusive and neglectful…especially towards my mom.

    My mental status has been brought into question alongside my ability to truly care for and provide care for my mom. My actions and words have been misinterpreted many times, and there are many aspects of the huge case made against me and the care I have been providing my ma that are blown quite out of proportion as well as being simply untrue.

    queen of the road:

    life will be Doreen…



Make A Donation Share Your Story