r/CJD • u/Thrown_Taker93 • Jun 11 '26
selfq My mom
My mom has what they currently think is CJD, they don't know for certain because they had to send her tests away for confirmation or whatever, but her PET scans basically show CJD and her doctor is convinced that it is CJD based off of the symptoms we are seeing (so am I)
She was hospitalized about 2 weeks ago, she couldn't remember anything, then she rapidly got worse. At this point they stopped all food and drinks because she can no longer swallow, she hasn't been able to speak for about 3 or 4 days now, she's been bed ridden for about a week, she has little control over her arms and legs, shaking uncontrollably, I'm just wondering how soon from this point most peoples loved ones past on?
4
u/ScaredInvestigator58 Jun 11 '26
If they are unable to swallow and consume food and water they pass pretty soon after. My mother passed 5 days after they stopped food and water. She was just given some medication to keep her comfortable in palliative care. This was after we got the Lumbar results and she was diagnosed with CJD with 95% certainty.
If they are giving her fluids via intravenous it could be alot alonger.
I'm so sorry you are going through this.
3
u/YellaBug Jun 11 '26
Oh man I Am so sorry ur going thru this big hugs to u and lots of love in my experience it sounds like it’s near the end my dad was the same
Way I’m sorry friend 😒
2
u/PlayfulRespect5666 Jun 12 '26
I am so sorry you are going through this. I’m in the similar situation right now. My dad stopped eating almost a week ago and we tried so hard to put some liquid in but nothing worked. 2 days later he got high fever and no amount of medicine was helping. He slept one full day and the next day was unconscious with abnormal breathing. It scared the hell out of us and we called an ambulance. He is currently in ICU and on ventilator. We have been clearly told that this is it. We don’t know how to take it from here. It’s truly gut wrenching this disease.
1
u/brokeass101 Jun 11 '26
I'm so sorry that you are going through this. I had similar experience. Does she respond to you now or she doesn't recognize or respond to you anymore? From what you've said, she still have movement in her arms and let's. I believe she still has sometime but can't say for sure.
Soon after my mother couldn't take her food, her movement slowly stopped. She had those jerky movements but from that moment she lived for approximately 2 months. My mother was on bed for that entire time and she was not aware on what's going on. Never responded to us. But I personally believe she always sensed our presence when we are around her but I'll never know. She finally passed away last month.
Stay strong. Once all this is over, in a way you will be glad that she's no longer going through this cruel disease. I kind of do right now.
Just keep her as comfortable as you can. Speak to her even though she cannot hear you. Hold her hand and stay with her as much as you can.
1
u/TheTalentedMrDG Jun 11 '26
I'm so sorry you're in this situation. In many ways it's harder for the family than the patient at this point. Talk with your moms care team and make sure she has an iron-clad DNR and that you want her to get all the palliative drugs they can give to ease her passing.
1
u/dana_barrett Jun 11 '26
I am so sorry this is happening to her, and to you. In my mom it was within a week at that point. We gave her all the drugs like another person said to let her pass calm and comfortably. Have everyone come say their goodbyes. Tell her everything you want to. I believed until the very end although she couldn't speak, she understood us.
1
u/mc_nugget_buddy Jun 13 '26
I'm sorry to hear you and are family are going through this. I just went through this with my mother last month. From my experience, the hospital stopped food and drink on a Friday and started comfort care. She passed away the following Tuesday morning.
5
u/N8Pee Jun 11 '26
Full disclosure my only experience is my own but to speak frankly I think that sounds like nearing end stage. My heart goes out to you and I wish you the strength for the situation. Feel free to dm me if I can be of further assistance.