I’ve been having really odd insomnia for months like literally my brain won’t go into sleep mode, and now I’am noticing my reflexes and co-ordination feeling off/worse and walking feels like a chore suddenly.
In Australia Victoria,
Creuztfeldt-Jacob disease we think, though the tests from his lumbar draw aren't even back yet, but the doctors said that's almost certainly what is was. He'd been having memory issues and confusion lately. Alzheimer's runs in his family, it killed his father thirty years ago.
He went for an MRI and cognitive test back in January or February, and they came back normal, but obviously something was wrong. The day before Easter he was feeling so anxious and confused he called 911. This time the MRI showed the right hemisphere of his brain all eaten away with white spots. The next day, against the advice of the doctors and nurses and with my mom begging him not to, he checked himself out of the hospital. So we had Easter together, but he was in a really bad way.
He was back in the hospital by the next weekend and deteriorated fast. Couldn't walk, barely could talk and soon not at all. My parents live about a 2 hour drive from me, so I cleared my weekends for the foreseeable future. Spent all weekend last week with my mom at their house and with him in the hospital.
He came home on hospice this Saturday. I was supposed to head back to my place Sunday night but he had deteriorated so much more, so quickly, I didn't think he'd last the night, so I called my boss and I stayed. I stayed up with him all night.
He knew he was dying the last time he'd been admitted, even though nobody else did yet, and told my mom he didn't want to die there, he wanted to die at home. So I told him over and over he was safe here at home, we had him set up in a bed in the living room, the dogs were over on the couch, we were all here with him and it was okay. I told him over and over how much I love him, and that I know he loves me. I played his favorite band The Beatles for hours. He always slept with the tv blasting all night anyway.
We had a somewhat difficult relationship and my family is one of those that doesn't confront our issues, we just play nicey-nice with each other, and I have bitterness and loads of regrets, but at least we had this time together. I don't know how much he could understand at this point but whenever I spoke he'd turn his head toward me and his ragged breathing would quiet for a little bit.
He died at 8:18 pm. My mom was on his left side, my brother at the foot of the bed, I was seated at his right holding his hand and rubbing his shoulder. Every time his breathing would get really bad and then stop, I felt for the pulse in his wrist. I knew finally when I wasn't gonna feel it, and I didn't. I waited 20 or so seconds before I said it. He took a few more rattly spaced-out breaths and that was it.
Now he's gone. They came and took the body. I gave him one last big hug before they did and bust into tears. He was 72. Their 52nd wedding anniversary is tomorrow. I don't know what to say or do besides just be here for my mom.
Someone else to me had confirmed sCJD about 3.5 months ago, after about 5 months of noticeable symptoms. They were diagnosed via Rt-quick test, mri, and then dna testing confirming sporadic. So, they’re at least 9 months in. Still able to swallow, shuffle around independently and use the toilet. Noticable mycolnous and hands are basically worthless at this point due to the “frozen” posture. Can still communicate but it’s diminishing to simple answers.
Has anyone else’s loved one maintained physical abilities through the end? I feel like the end must be near considering the time since symptoms showed up (and honestly we thought there was FTD for about 1.5 years before, which is why we even discovered the CJD)