After the April disaster in Miami, something had changed. It wasn’t really obvious at first, but in hindsight, Ralf’s disease presentation had begun to change. But he is not the only one: my mom has cognitively declined for a while now. People around her didn’t pick up on it but I know her good enough to see the changes. I call her pretty much every day, and I started to monitor her emails since she has now the tendency to buy things online but then forgets to pay for them. Over time, she forgot how to properly use the landline telephone, pushing random buttons to make a call, then declaring that the phone is broken… I used to have someone, who got paid very well, to look after her, clean her place, and took her to doctor’s appointments. I heavily relied on her because I couldn’t be in two places on earth at the same time. Ralf was still not well after the hospitalization in April and my mom had an important appointment with the neurologist coming up May 27th to go over the brain MRI results. But then I found out that the lady I trusted my mom’s care with was stealing from her, so I had to cut her lose. Awesome. The only lifeline I had to make sure my mom was taken care of. And not only that, my mom was of course attached to her by now, and trying to explain to her why she is no longer coming was a difficult and hurtful task.
But the full disaster hasn’t even unfolded yet: beginning of May, I called my mom on my way to work when she said “I have nothing to eat or drink… and I am having a rash that really hurts”. Turns out, she had shingles. And because of that, she became weak and disoriented even more, unable to go to the grocery store. And nobody noticed, even though she lives in a Red Cross facility (independent but under “assisted living”). So in my desperation, I called Roswita, a very kind and helpful friend, who works part-time for the Red Cross. She brought my mom food and water and promised to take her to her appointment. However, I already knew in my heart that something was seriously wrong, and if I don’t fly to Germany now, she may not make it. But what about Ralf? He was not doing good at all, and I really didn’t want to leave him alone either!!!! Pick and choose? Clone myself? Who would die first, him or her? So I made a compromise: I booked a flight to Germany for 6 days, hoping it would be enough time to stabilize her, take her to the neurologist, and put reliable resources into place. Six days Ralf was alone at home, and all I had was Facetime to keep connected. But it had to be done, and he was so supportive – despite his own fears and separation anxiety.
So on May 24th, I had to leave Ralf behind and fly to Germany, with my return flight booked for May 31st. When I arrived in Hamburg, I already knew things were bad because Roswita picked me up from the airport without my mom. My mom would never ever not come to the airport – this was usually non-negotiable. And I was right: when we arrived in the parking lot of the Red Cross complex, I saw her pale face behind the living room window (facing the parking lot). Then my mom shuffled outside to greet me…. She looked like a skeleton, with sunken eyes, collar bones sticking out… it was awful. I almost burst into tears but held it together, supported her frail body while leading her back inside to lay down. I knew in my heart that she was on the brink of no return.
Over the next couple days, I cleaned her place and threw out all the spoiled food in her fridge, which had expired in chronological order. I found pans with molded food in it, covered up by more pans with molded food... it was awful! I went grocery shopping and nudged her to eat... I wasn't hungry myself, but I noticed that she would eat if I ate...
One pre-existing issue in her apartment was the toilet, which was installed too high, and since the Red Cross marked it as acceptable when my mom first moved in, they refuse to fix it. The previous renter must have installed a higher toilet to suit her needs, but it was never reversed. My mom is 5 feet tall, so she has to slide with one side onto the seat, which naturally doesn’t work out very well, leading to urine running down the rim often. So, with nobody cleaning her place anymore for weeks, one can imagine what condition I found her bathroom to be in. And it’s really not her fault at all, that stupid toilet is even too high for me, and I am 5’6!
It was May 26th, my birthday, which my mom also forgot, when I scrubbed her place… and now I know it was my last birthday I would have had with Ralf. I didn’t know, but it didn’t change the circumstance anyways... I found her blood pressure pills and other medication under her bed and in other random places, so she wasn’t able to manage her meds anymore either, so something needed to be done. Ralf and I facetimed, he gave me a gift virtually: a gift certificate for a tandem parachuting jump, including video. A gift I have yet to redeem. God, I love him so much, and he was suffering with vicious digestive issue, afraid to end up in the ED again without me being at his side.
But I had to pivot and focus on the task at hand: putting lasting resourced into place in less than five days. It was Monday morning, the day I was taking my mom to the neurologist. It’s something she was dreading because she was always so afraid to get dementia. This morning started already in the most cruel way: my mom and I have this ritual in the morning, where when we wake up, I take my blanket to her bed, then we have coffee in bed together. She looks forward to this every time I come. This morning was no different, however, I had to make sure we were up and ready to go by 8 AM for our appointment. So I hand her a cup of coffee, and she was all happy and giggly… I asked her how long she would need to get ready because Roswita is picking us up at 8 AM… she looked at me wide-eyed, asking me “why is she picking us up?”, I said “well, remember, today is the appointment with the neurologist…”, she looked at me with a blank stare “huh?”, “remember, the appointment with the neurologist to go over the MRI results…”. Finally, I saw acknowledgement in her eyes, her face went from smiling to a deep frown… “Oh”, she said, put down the cup, rolled on her side, and cried. I felt like the biggest asshole on the planet, but what was I supposed to do??? It NEEDED TO BE DONE! Damn it, life sucks.
Long story short: we went to the neurologist, got the (not surprising) diagnosis of intermediate dementia. From there, Roswita drove me to the AOK health insurance agency office in Heide, where an admin person took mercy on me and filled out the paperwork, applying for disability. After that, Roswita took me to the Red Cross main office to try to initiate services, such as medication administration and cleaning service to start with. I am now the official caregiver for my mom and Karl-Heinz. And this is just the cliff note version.
Now that I set everything in motion, I was busy trying to organize and improve the medication situation: I got the orders for all her meds, went to the pharmacy to refill what was needed, bought a new pill box system, and got everything ready for when nursing service would finally kick in.
Then came the pain. My mom’s shingles had resolved (no longer contagious), but the severe nerve pain was hitting her now in waves. I already made an appointment with her primary care to get her pain medication prescribed, but it was just awful to see her suffer so much. All I could do was hold her when the waves came… meantime, I was also so worried about Ralf.
In the end, it all turned out ok. In those six days, I made sure my mom ate, had a clean place, I sat with her on a bench outside in the sun, managed her meds, took her to all necessary appointments, applied for disability, and just held her when the pain came. It was a miracle that she was looking so much better by the time I had to leave, and now a nurse would come every morning to give her her meds. She even came to the airport this time to drop me off – a huge turnaround, I would say. Crisis averted, now back to Ralf.
