Sometimes I feel like writing a book about what I’ve experienced in the last three years, because boy, do I have content. My life has spun largely out of my control since the end of 2019. When my dad died in January 2022, three weeks after mom got diagnosed with cancer, I did not have time to process his death. Mom needed me big time.
My parents meant everything to me. We were extremely close (I lived with them) and I helped them where I could. Now, life was already different after my dad’s first stroke on Christmas Day, 2009. But when he got his second stroke in 2020, everything went downhill from there for our family.
I want to share my personal story on my blog post because I need an outlet. And I strive to create a personal connection with you, my dear reader. Should you have experienced similar struggles, I hope reading my story can make you feel less alone.
2023 Recap: My Personal Story
Before January 2023, mom was already having more and more medical issues that our doctor did not properly address. Long story short, from the moment mom was diagnosed with a rare, incurable form of cancer, she was treated as a dead woman walking. And yes, I am very angry and bitter how she has been treated. This blog post doesn’t even cover half of what she has been put through at the hands of her ‘carers’.
January did not start off well. Mom had a lot of pain. The pain medication, as discussed many times with our doctor, did not work. As always, he insisted to just “take more” instead of prescribing something else.
That pain medication was fentanyl.
After increasing her dosage, mom always got side effects: sleeping lots, trouble speaking, loss of motor skills, pain in her leg and even hallucinations.
She had a urinary catheter and dealt with many issues her caretakers couldn’t fix. A main problem was the urine not draining into the bag. (Air lock.)
Meanwhile, my boyfriend and I guided mom to lower her dosage of fentanyl and she was doing very good. We got her down from 50 mcg to 12 mcg transdermal (patch on the skin).
Her catheter problems persisted. She was admitted to the hospital to try and get this solved. I went with her in the ambulance and stayed with her to explain to several nursing staffs why we were here: the catheter doesn’t work properly. We suspect an air lock (“what is that?”) and mom certainly does NOT need any pain medication right now.I can’t stay 24/7 so I go home.
The next morning, mom messages me on WhatsApp saying: They’re going to hook me up to a fentanyl pump.
This was exactly what I feared. Mom herself and I told them MULTIPLE TIMES that she didn’t need pain medication. I called the hospital and explained to the nurse that mom becomes worse on higher fentanyl, without reducing her (perceived) pain. I said: “she stops eating when her fentanyl goes up”, and the nurse blew me off asking me what’s better, mom not eating or mom having pain? I said if mom stops eating she’s going to die.
Mom was already close to emaciated at the time due to her previous issues with fentanyl.
Anyway, my concern was ignored and the pump was hooked up. This led to my mom becoming worse and worse in 4 days time. She stopped eating, stopped being happy and talkative, couldn’t use her phone anymore, started hallucinating and being suspicious of everyone around her, including me. She said things to me she would’ve NEVER said if it wasn’t for the fentanyl.
I mentioned this to the nurses and they went “it’s good you let us know!”.
Next day, her fentanyl was increased again. She was at 75 mcg. (Remember: she came in with 12 mcg and got put on 75 mcg in the span of FOUR days. AND she was given extra shots in between.)
Her oncologist said she was doing so bad “because of the cancer”, it would be better to send her to a hospice. She was given 3 months to live.
I refused and took her back home.
Through some miracle, I was eventually able to get through to her again and we started slowly decreasing her fentanyl again. Mom was doing well pain-wise.
Oh and that catheter problem? Yeah the hospital didn’t even look at it. The problem was still there.
Mom receives night care in addition to day time care.
Through another miracle, it was discovered that mom was able to urinate without a catheter, so her catheter was left out. Being bed bound, she needed proper care to ensure no problems would occur.
Well, unfortunately the story worsens from here.
After pushing the doctor to test for a UTI again, it was discovered she had one. She was given antibiotics.
By the way, I already suspected she had a UTI and asked the hospital last month to test for it. They never got back to us about it.
Her day time care starts talking negatively to mom about her condition, telling her that her urination pain is caused by the cancer and antibiotics won’t fix that.
They also complain about the number of hours they have available to take care of mom, now that she receives night care. (Something about a budget they are allocated.) What it comes down to is that the day time care wants to severely cut down the number of times they come over to take care of mom.
The lack of proper care and washing then results in another infection.
To “fix this problem” the day time care and our doctor decide to cancel mom’s night shift nurse(!) because and I quote: “You’re doing so well, maybe you’ll make it to summer after all.” (And having repeatedly told she would have maximum days to weeks to live.)
The doctor had been telling mom for past three months that she would have days to weeks to live.
The night care was taken from her and mom’s situation went down hill. Lots of pain, lots of crying, scared to enter the night. I was on my feet to help her EVERY SINGLE DAY from 7 am to past midnight to care for her. Where we initially had the help of a night shift nurse at home to take care of mom at night, now it was my turn. This meant I would also be woken up at night by mom for her on going issues. Sometimes I was too tired and didn’t hear her WhatsApp message, and my boyfriend let me sleep and went to her instead.
On another night I had to call for assistance at 3 AM, waiting for someone to come by for mom. After which I would go back to bed and get up as soon as mom woke up (I had set up a camera to check on her.)
Thankfully, mom was given back the night care and I told the day care that I would help mom with washing, brushing teeth and combing her hair every morning.
Unfortunately, mom never became alright again.
Due to the new infection issue, mom was having a lot of pain. Because the doctor refused to change to a different opioid, her fentanyl was increased again and mom started doing bad rapidly. This was accelerated after she was given midazolam for the night.
My boyfriend and I talked for hours every day with the night shift nurses to discuss mom’s situation. They could not believe that the doctor refused to give her anything else. Methadone was mentioned as an example.
On Saturday morning, April 15, I talked again with the night shift nurse who finished her shift at 7 AM. She said: “I can’t understand why your doctor doesn’t do anything. I’m going to call him on Monday.”
Sadly, 7 hours later, mom was put to sleep through palliative sedation.
She died on April 18. My boyfriend and I stood there by her bed and watched her take her last breath at 11:49 AM.
April to October 2023
After mom’s funeral, there was a lot to arrange. I spent the first month grieving. After that, it was time to clean up the house and empty it.
I would be put out of my childhood home, as I legally had no right to continue renting it. At least, so they said.
Having basically only spent our time taking care of my parents after we returned from The Philippines, we had no job other then a small online income.
I tried researching my options and asked a nonprofit organization in my town for help, but received no response.
We continued cleaning up. We sold items, we trashed items. We had 6 months and a big house, front yard and backyard to empty.
We got rid of cabinets, couches, beds, kitchen equipment, clothes, plants, garden decor, lamps, clocks, shoes, tables, bikes, appliances, TV’s, Christmas decorations, food and of course… our own stuff as well, as we could not take everything along on our next adventure.
Instead of returning to The Philippines, we decided to go and check out Eastern Europe. With Bucharest, Romania as our first destination.
October – December
Upon arrival in our Airbnb in Bucharest, we had our ups and downs at first, as we struggled (still to date) with everything that happened since end of 2019.
To make matters worse, my boyfriend’s existing foot condition (gout) got worse and he became unable to walk. His foot condition was developed while living in The Netherlands and drinking the tap water from lead pipes.
And to top it off, I ended up with a severe stomach issue that I was real close of seeking medical care for. I’ve never been on more pain medication in my life.
Luckily, my issue is resolving itself after three weeks of suffering. As for his foot, it’s getting there but not 100% yet.
So before we knew it, our time here in Romania is almost up and we have to move on to a new country as we were unable to go out apartment hunting in our state.
Another downer to finish off 2023.
All in all, it had been a very difficult and painful year. Mentally and physically.
But I am grateful for the experience and I am grateful that the cats are doing surprisingly well. I hope they will adjust just as well when we move to a new place in January.
And hopefully we will be granted some good times, and we will be able to figure out where to settle for the long term.
Thank you for reading my personal story on what happened in 2023.
Watch out for yourself and your loved ones. May 2024 brings us health and progress.
(Edit December 31: Just heard that my aunt – mom’s oldest sister – has passed away today.)