Hello folks, I apologize for the delay in updates as things have been extremely difficult as of late. I felt Adivie’s condition was rapidly declining and something wasn’t ringing quite true in what I was being told. I arrived in Amsterdam on July 3rd, 2021. I soon realized I was misled to believe every effort was being made to get her out of the Hof Van Sloten Dementia Ward, where no one seemed to how they misplaced her in there. I was also told she would start getting the physical therapy they neglected to continue when they moved her, but she had not.

I arrived in Amsterdam to find my sister in an appalling condition, mentally and physically. She had passed out several times and had received a CAT scan and we were waiting on an MRI because they believed there could be an issue with the drain in her head. I couldn’t comprehend the delay on the MRI if they truly believed it was due to her drain, and I kept pushing the facility about it.

I could not leave her in that room alone; it truly broke something in me to see her like that. I spent every day with her until she fell asleep, until the day the results of the MRI came in. I kept pushing to have it done earlier but kept getting told there was no room on the schedule. The entire time I was there, two of the nurses were adamant she did not belong there and encouraged me to take any steps necessary to get her out. I told them once the MRI results were in, I would remove her and take care of her myself.

Once the MRI was completed we received mixed messages about the results. First we were told they would bring her to the hospital for additional tests by one doctor, then told by the facility doctor that there was no issue with her drain or valve, and further tests or procedures were not needed.

Needless to say, if any of you know me, I did not take their incompetence lightly. I scolded the doctor and told him that they violated the Hippocratic Oath. Instead of helping they did nothing but harm her. The social worker (whose identity I learned after the fact) tried to convince me to leave her there, that it would be too stressful and difficult to take care of her. I told him he had NO idea of the stress I was in because of her current state, which should never had happened, had she had competent care. I told him considering all they did was feed her and help her bathe ever few days and neglected all therapy, I knew I could take better care of her than they did. I let them know I was disgusted by their health system; one that neglects patients because it would require the facility to make an effort to help them. Apparently, after the meeting the Doctor yelled at the social worker because it had been his responsibility to get my sister placed correctly. He also arranged for a series of tests at the hospital to make sure they didn’t miss anything in their incompetence. It is ridiculous it took my flying from the US, berating doctors and pulling her out of a facility that was supposed to help her, to get the Doctor to do anything at all.

I arranged to take her out of the facility. I cannot begin to describe the state she was in. Those 6 weeks truly traumatized her and I refused to let her stay there. I was devastated that I was not informed how bad it was. Her boyfriend Martijn assured me he was doing everything he could. However, I began to doubt his efforts when he suggested we tell the facility to keep a bed open in the Demnentia Ward, in case she was too difficult to handle. I told him absolutely not, I will take care of my sister. I began to make plans for her recovery, where I was looking into home care for her and the necessary therapists. My doubts about her boyfriend Martijn were realized as he told me that, once I left, he could not be responsible for her. He needed to think of himself first, and he couldn’t take care of her, either physically or financially.

While I can understand the difficulty facing him, my sister helped him to find a home by moving in with her, then doing what was necessary to obtain another apartment, was their for his heart procedure, and helped raised his son for 3.5 years. Additionally, at that point I had assisted him with the the rent, her insurance payments and anything else she needed with the funds raised from family and friends. I had also told him that if she had home care I would continue to do so, and pay for any care the insurance didn’t cover. This was because my sister LOVES Amsterdam, and her life there. I tried to get her to come back several times, even offering to pay her ticket fare, but she refused. It was her home and I felt horrible for her that she had to leave it. However, when he told me that, I told him, then she will be coming back home to live with me.

Up until my return to Amsterdam, I had believed he truly cared for her and had her best interests at heart. Seeing her condition, hearing him suggest possibly putting her back in the dementia ward, then telling me he had to think of himself, that changed my thoughts quickly.

I advised him that since I had planned to stay until September, I needed to build up her strength, get her some physical therapy and I would take her back to the USA.

The first weeks home were heartbreaking. The trauma from the Hof Van Sloten Dementia Ward kept her from sleeping properly. She was afraid she would wake up with the “crazy people”. She is suffering from PTSD and all efforts to get her the neuropsychologist she desperately needed in Amsterdam failed, due to the incompetence of her Doctors and her boyfriend’s lack of urgency for her care.

After a couple of weeks she started to finally feel safe to truly rest and sleep. I know this because she has continually told me “I feel safe with you here”. Her short term memory is almost non existent. She will continue to have issues for more than a year as the brain tries to heal itself. She is often confused and also realizes there is something wrong with her, just not what. Patients who have a burst aneurysm never can remember what happened or the weeks following, so that is not unusual. Hopefully with time, she will remember what we have told her instead.

Her lack of physical therapy led to muscle atrophy in the leg and she had difficulty walking. I kept pushing her boyfriend to contact doctors and therapists. His lack of urgency in helping to get her the care she needed was something that tried my patience immensely. It took until the end of July to finally have a physiotherapist start making house visits three times a week.

The therapist Nina was a God-send. She has been using a new laser therapy technology that truly has helped improve her leg. (God bless Nina!) She recommended special footwear and a brace, and I tried for weeks to get it done. I kept running into obstacles, with her boyfriend Martijn cancelling the fittings and her Doctors taking vacation for 3 weeks straight. Her boyfriend said her Doctor has arranged for one (she had not) and I could not find a single doctor to write the prescription needed for the brace and shoes. I admit I had a breakdown when I failed in that endeavor.

With proper sleep, nutrition, vitamins and therapy, Adivie finally improved enough to be able to travel. Oddly tickets were ridiculously expensive from after September 6th, so I booked a return to America for September 6th. I spent the weekend of 8/24 packing up the 8 years of her life in Amsterdam (8 suitcases later). She did not want to leave Amsterdam and became extremely upset as the day got closer. Martijn decided to go away that same weekend, the 2nd to last weekend she would be there, to visit his parents. Yet once again, the boyfriend who tried to convince me with words that he cared for my sister, showed by his actions that all he cared for was himself.

Frankly, I am extremely disappointed and disgusted by her boyfriend’s behavior, an officer of the law in Amsterdam. I learned his interest was only in how he could benefit from her trauma. He made it clear to me on July 14th, 2021 he had no interest in having her at home and taking care of her during her recovery even with financial support. He spent very little time with her, staying out until late nearly evening evening, drinking and often becoming intoxicated staying up late (and keeping me awake). He clearly wasn’t working more than a handful of days, in his job in Amsterdam. In fact, he had told me his Captain gave him a lighter schedule in order for him to help Adivie. Other than an hour or two when he finally woke in the early afternoon, he did very little while she was home. Later I was to learn he did not visit her at the dementia ward as often as he tried to make it seem.

On two different days, he made it clear that he was more concerned about getting money for his own personal use from the fundraising I did for her care, than her actually leaving. He wanted me to provide funds for his future rent, despite it being his choice to distance himself from Adivie and her life (Thank God and Good Riddance!).

When I made it clear that was not happening, that the remaining funds were for her medical care and needs that will need to continue in the USA, he became difficult. His behavior led me to call the police on him, the 2nd time he tried to bully me into giving him money. The first time, thankfully there was a witness to the event, a dear friend of Adivie’s who helped immensely,

Why am I sharing this information?

The next day, I learned that he has decided to perpetrate what equates to fraud. He sent out a notice via an attachment in messages to friends and family. He advised them of a bank account he opened up in his name alone, supposedly for Adivie’s care, written as if it was with my approval. This is completely false. The account is NOT for Adivie’s care and I DID NOT approve any such account despite his words. His message is written to deceive people and to receive funds for his personal benefit. I was made aware of it by MY relatives that he had the audacity to send the message to. Additionally, friends in Amsterdam notified me they received the same note as well.

Below is the message he sent out. Very little of it is true other than she was happy to be home (with me, not him), I have been dealing with her challenges, and she has a big support group in the USA. As for Martijn being devastated about her leaving, it was clearly about the money he would not be receiving once she was absent.

That same night, he kept us awake until late, continuing his nightly bouts of drinking. After another night of his unacceptable behavior, I booked a hotel room for Adivie and I for the remainder of our trip, where we stayed until we left Amsterdam.

Frankly, it’s been a nightmare on top of the nightmare of Adivie’s burst Aneurysm. I am glad I brought her back to the USA, even though it will be another complicated process of getting her treatment she needs. It has already been a rough start, but I am hoping it’s the change of location and that she will begin adjusting to life here, and will continue to improve.

One good thing about this trip, is getting to know Adivie’s wonderful friends. They helped me keep my sanity in what became an insane world.

Adivie’s friends in Amsterdam have left me speechless with their love and care and help while I was there. Bailey Kauwen, Joan Lu, Tracey Prince…..thank you for your friendship, your kindness, your help and caring. I love you dearly and you all have become family to me. Patrick….thank you for everything you did. Cheryl, thank you for all your support and love and so happy we got to see you! The Cave Crew…thank you for caring about Adivie and arranging to see her again before she left. It’s not good-bye, just farewell until she heals and can come back to Amsterdam.

I’ll keep everyone updated on her progress now that we are back in America. Thank you everyone for the love, support, caring and donations that truly, have touched and helped us with Adivie’s care.

Thank you all!

Hello everyone, the last couple of weeks have been tough. The facility Adivie is in moved her from the room that she had. That room was designed for patients coming out of Brain Surgery and had a more homey comfortable feel to it. Being there enabled Adivie’s brain to start healing without the shock of being in a “facility”. However, on May 21st, they moved her. Apparently the facility did not have an in-between section for patients like Adivie; younger, still mentally recovering and but not yet able to move to a full physical rehab facility. Unfortunately, they moved her into a cold, stark, falling apart, tiny hospital like room in the Nursing home section of the facility. Adivie did not react well to the move.

She was upset and felt like she was being locked away, that no one wanted her. Her boyfriend Martijn was furious they did such a move, but unfortunately since they waited until Friday afternoon to do it, all the bureaucrats involved were gone and nothing could be done. We spent the weekend trying to calm her and assure it is temporary, we will resolve the situation and get corrected.

By the the time Monday came, she wasn’t sleeping, and her mental progress took a few steps back. She was getting lost in the past again. However she did recognize she was somewhere she did not want to be, and kept telling me she would leave the next day, they couldn’t keep her there. By Thursday, she did just that. She walked out of the facility.

They did bring her back in. I was extremely upset, as they hadn’t done anything until then to resolve the situation. My sister is tough, even in her weakened state, and her walking out was intentional. As much as that frightened us, it woke up the facility and had them re-evaluate her case again.

They moved her to another section with supervision but still not the ideal place for her recovery. Martijn set up appointments to speak to the doctors, both on the phone and in person, in order to resolve this. I was concerned that they were just sweeping her under the rug, because it was easy to do. I called her the other day, and although it was 11 pm, she had two members of the staff there. One was a woman who I ended up speaking to, and expressing my concern about her regression, how she regressed, the lack of sleep and my fear of leaving her in the section she was at would not be beneficial to her recovery. The woman was very kind and agreed she was in the wrong place and assured me they were working for a solution to suit her needs.

My big frustration is that Martijn kept saying they did not have the facilities for patients like Adivie, younger, with brain trauma needing to recover. Personally I think it’s ridiculous that a facility in a medically advanced country like the Netherlands were saying such a thing.

They are now working to get her rehabilitation on track, and finding the best location for her. However, my big concern is what they told us about the insurance. Despite the Netherlands having government funded healthcare, to have decent health insurance you DO have to pay extra. Adivie had been doing so. My concern is they did say that the insurance does have limits on it. They told us the funds do run out, and when that happens, her therapy runs out.

So guess what folks? Government healthcare isn’t all its cracked up to be, even in the countries that have had it for years. Their preventative care is non-existent, which we believe to be the reason she ended up with a burst aneurysm. Her government paid general practioner did not send her for the proper tests when she was in excruciating head and neck pain, with fever and vomiting for THREE weeks, just wrote it off as a flu. And no, you cannot sue; you will not win.

The Neurologist told Martijn today, that for someone of Adivie’s age, with what happened to her, the normal recovery time is two years, and could even take a little longer. That’s two years of care and medical treatments that will not be fully covered.

So please, please contribute to her fund raising accounts if possible. We are nowhere near our goals, and the expenses will keep growing.

I do expect to be going to Amsterdam at the end of the month. I would love to have her friends and family send me any photos of them with Adivie, anything that will help her memory. If any friends or relatives have pictures or stories they would like to share, please send them to me or contact me. I am going to consolidate them and create an album she can keep with her to assist in her recovery. I would appreciate anything you have.

I also want to thank everyone who has donated on behalf of Adivie. We are blessed to know such wonderful people, and I pray that many blessings fall upon all of you.

Please, if you can, continue to donate and/or share her page and her information, for more donations. We do not know how long this recovery will take and have a ways to go to reach her goal.

Again, THANK YOU! All of you, from the bottom of my heart for all the love and support

.

MAY 21, 2021

Adivie was progressing physically at this point. . She is able to walk and get around by herself, although she is a bit on the frail side. She was slowly gaining weight and we had hopes her stomach tube would be removed.

Adivie’s biggest hurdle is mental cognition. Her brain is still struggling to accept her situation. Adivie has a cell phone with restricted access to her. She can call a limited amount of people when she likes. It’s these calls that allow us to learn from her what is going on in her brain.

Sleeping has been a struggle and she is not on any medication at this time. She often texts or calls past midnight her time, so we are witnessing her sleepless nights. She usually looks exhausted and I encourage her to sleep, telling her we will talk in morning.

The lack of sleep tends to exacerbate her cognitive impairment. At times she tells me she is at a bar in Ridgewood, waiting for me to pick her up from work. Sometimes she is at O’Reilly’s in New York City, having a drink before heading home, or in the parking lot of her job. Other times she believes she is in our old room at our parents home in Midland Park. She doesn’t “see” where she is, only what her brain is telling her. The Center’s staff become waiters and waitresses, as she sees them providing patients with meals or beverages at times. Their station appears to her as the bar, where she would sit and hang out with them. When she asks me to come see her “today”, it breaks my heart to tell her I can’t, I am in America and she is in Amsterdam.

It is these times I ask her to stop and look around, to really try and see her environment. I describe to her what it looks like and tell her she is in a Rehab center. The little bit of amusement I had was her reaction to using the term “Rehab Center”. In her mind a Rehab Center is a Drug Rehab Center, and she was very indignant and upset with me that I would think she would need a Rehab Center. I clarified it was a Physical Rehab Center, not a drug one, and I summarized once again, what has happened.

During these calls, I run through what has become my standard speech to her. I ask her if she knows what an aneurysm is. She usually says yes, as our mother passed from one. I tell her again that she had an aneurysm in December. I recount her hospital visit, her stay in the Center, my previous visit, what the date is, etc. When she tells me she doesn’t remember being in a hospital, I tell her she never will. I assure her that it is ok, it’s normal with this type of brain trauma. I make it clear to her that she is healing, little by little, and that she needs to sleep and eat properly, in order for her brain to heal.

What is really rough, is her emotional days. On those days, she is more aware and realizes something is wrong with her. She feels confused, sad, upset, and afraid. One day she told her boyfriend Martijn, she was just waiting for the next bad thing to happen to her. He reassured her that she was getting better and was very much loved. I encourage her not to worry about anything, that we have it all covered. I try and impress upon her how much love and support she has from her friends and family, and even strangers. I list the names of all the people who have reached out to me to relay messages to her. I do not get off the video call until I see her calm down a bit, and stress how much she needs sleep and rest. I remind her how I have always loved her and watched out for her, and always will do so, even if she gets sick and tired of me, that she will never, ever be alone, even if I am not physically there right at the moment.

It is really, really heartbreaking to watch her go through this from across the ocean. I tell her I will be there to visit her soon, as that is the plan at this time. Her cognitive impairment is keeping her from being able to move to a more intensive Rehabilitation Center, which would help in her physical recovery. The neurologists cannot give us a time frame on any part of her recovery. Patience may be a virtue, but it is a difficult one to accept at times.

There are some positive points though. Since she can now walk, the Center arranged a visit to her apartment with a care taker, to test her memory and reflexive actions (see video). They recently took away her wheelchair, hoping that will keep her in bed at night, where she may fall asleep.

The plan at this point, is my returning to Amsterdam to be there again to help her through this. The hope is that with me there physically there and able to talk to her about her past, may help her in some way. For me to be able to visit again, will require jumping through hoops. Letters from her Doctors regarding her condition, letters from the Dutch consulate, PCR tests, are all required before I would be allowed into the Netherlands.

To that point, if any friends or relatives have pictures or stories they would like to share, please send them to me or contact me. I am going to consolidate them and create an album she can keep with her to assist in her recovery. I would appreciate anything you have.

I also want to thank everyone who has donated on behalf of Adivie. We are blessed to know such wonderful people, and I pray that many blessings fall upon all of you.

Please, if you can, continue to donate and/or share her page and her information, for more donations. We do not know how long this recovery will take and have a ways to go to reach her goal.

Again, THANK YOU! All of you, from the bottom of my heart for all the love and support.

Adivie has continued with her rehabilitation in Amsterdam, and is progressing physically, slowly but surely. Her biggest obstacle these days is cognitive impairment.

Adivie’s memory fluctuates back and forth from the present to the past. When Adivie is fatigued, she tends to believe she is living in a past time frame. This leads to a roller coaster of emotions from her on a daily basis. Some days are good – she eats, she smiles and laughs. Other days are difficult, and her behavior and symptoms are those of a person with extreme depression.

Those difficult days are the hardest to watch her go through. Her brain cannot yet absorb the fact that she had an aneurysm, had surgery and now in rehab. She often times insists she is in the United States rather than Amsterdam.

For example, a few days ago, she asked me when I was coming to visit. I had to explain to her I was in America while she was in Amsterdam. I patiently explained everything that had happened to her since December, until it appeared she accepted what I was saying (for the moment). I assured her I would be returning to Amsterdam to be there for her, and her boyfriend Martijn would come by to see her. She told me how she felt she was going crazy, and she didn’t know if she would be able to get through what ever was happening to her. She didn’t remember being in the hospital or anything happening to her. I told her she likely never will, and that it was normal to not remember. I promised her she was healing but it would take time, and that she was NOT alone. Frankly, by the end of the call, I was in tears and swearing on everyone I held sacred that I was not lying to her.

Her neurological issues mean her emotions have no filter. When she is upset, or happy or confused, it is evident in her tone and facial expressions. It is truly hard to keep stoic and not break down when she is scared, stressed and confused.

Her brain is not accepting what is truly going on around her at those times. It is those times that I have to walk her through what happened and where she is. She is not “seeing” the staff as people who are there to help her. To her, they are characters of her mind, depending on “where” in her mind she is. Convincing her that they are there to help her heal can be a challenge at times.

She “sees” her mother and her brother Jim (Xhemil) often, both who have passed. We always try to ground her in reality and not humor her, in order to help her heal. It’s not easy to witness someone you love, someone so sweet and caring go through this. Words will never be enough to fully explain to anyone, unless you witness it yourself.

Her boyfriend in Amsterdam, Martijn, has been wonderful in making sure she is being cared for. He brings her the foods she loves, in order to get her appetite where it needs to be and helps to keep her grounded. His video calls to me during the visits are the only times I see her looking happy and more herself.

Below are some pictures and a video. Again, we would appreciate any donations to assist her in the long struggle ahead. Please feel free to contact me on the Contact Page and I, her sister Femide, will get back to you as quickly as possible.