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.