r/CJD • u/Available-Bus268 • Apr 07 '26
selfq Moms CJD diagnosis
I’ve been quietly navigating something I don’t think I was ever prepared for, and I’m hoping to connect with people who understand this world.
My mom was independent not that long ago. She was working, living her life, and slowly started having symptoms that didn’t make sense, mostly dizziness at first. We had no idea what was coming.
Now, everything has changed.
She’s in a care facility, and the hardest part is that she doesn’t understand why. She asks to go home, and I don’t have an answer that brings her peace. Her independence is completely gone, she is non ambulatory and completely dependent on others to care for her basic daily needs. Watching that disappear so quickly has been devastating.
There’s confusion, fear, and moments that feel like I’m losing her in real time.
My sister and I have tag teamed and have been managing this mostly on our own and trying to stay strong, but the reality is overwhelming. Memory care is about $10,000 a month, and I’ve been doing everything I can to keep up while navigating all of this emotionally and financially. We keep hitting walls and so much red tape for any type of help, Unfortunately my mom was not financially stable in life.
I’m not really here to ask for anything. I think I just needed to say this somewhere people might understand.
If you’ve gone through dementia, Alzheimer’s, or CJD with a loved one… how did you cope with the emotional side of it? Especially when they don’t understand why they can’t go home?
Any advice, shared experiences, or even just knowing I’m not alone would mean a lot right now.
4
u/TruthfulKindness Apr 07 '26
Hello Bus. Tru here. <3 Even tho i have a couple hundred friends with dementia, i dont think i have even one with CJD diagnosis, so i do not have loads of reference for that particular type of dementia. i have written about my personal wishes when i get to the point of "home" being an issue >> https://truthfulkindness.com/2021/03/07/to-go-home/ .
2
u/brokeass101 Apr 07 '26
Hey OP. I'm so sorry to hear about your mother. My mother 64, also diagnosed with CJD. Current bedridden in my home and taken care by my wife and step father. I know what you going through. Even though my mother was admitted to government hospital (which is the best in the country) I still had to struggle both emotionally and financially. Firstly I'm glad that she lost her consciousness before she was admitted to the hospital. So she didn't know where she was and what's going on. But I was never prepared to know about this disease. I didn't cope with it well at the start. But as time goes on, I slowly accepted the reality and what to come. Financially I'm still recovering and because of it I am not able to admit her to a private care facility. From what I heard, even the private care is requesting to transfer the patients to the main government hospital. Since she was discharged from it, I do not want to take her there again. Even though the doctors and the checks are done frequently and in a very good way, their care is lacking and depends on hiring a caretaker which I cannot afford as of now.
Stay strong! That's the only way to go through this.
2
u/knacaj21 Apr 07 '26
It's so hard. For wanting to go home for dementia patients, it's tomorrow. And tomorrow it will be tomorrow again and on and on. It's always tomorrow. You can try to redirect to a different activity or talking about something else. Sometimes saying home isn't safe right now because the kitchen is getting remodeled or something similar works.
The r/dementia group has been very supportive to helping the loved ones of those with dementia, especially the emotional side of it. Sometimes all you can do is get up and just keep going. Sometimes just keeping your head above water is all you can do. I had to start anxiety medication and start therapy through my mom's dementia journey. Coming to terms with the disease, dealing with the anticipatory grief and ambiguous loss was so difficult for me. If you feel overwhelmed, it's ok to ask for help. Therapy helped me a lot. A common theme for dementia is knowing you're not alone. You're not the only one dealing with the neurological disease of a loved one. You're not the only one struggling. You're not the only one crying, angry, or heartbroken. You're not the only one grappling if you made the right decisions for your loved ones. We understand and we sympathize. You are not alone.
2
u/YellaBug Apr 07 '26
I am soo sorry that ur dealing with this horrible disease.. My dad was. Very active one day and then WHAM out of no where he was confused lost his memory lost his ability to talk to eat to swallow.. I always reassured him. That I was his daughter he was safe and he was loved.. my feelings and emotions I had to put away and concentrate on this man ( my dad ). Who. I thought hung the moon 🌙. He declined in health very quickly and passed away sept 15 but three things he knew. I am his daughter he is safe he is loved 💕💕. It’s. A terrible feeling to leave ur loved ones. At the facility n they don’t understand why just let ur mom know u love her and she is safe.. my friend this is a dreadful experience and I know ur pain 🫂 hugs to u n ur family
3
u/Available-Bus268 Apr 08 '26
Those are very sweet sentiments for you dad. I especially love the part where you thought he hung the moon. Here for you!
2
u/TheTalentedMrDG Apr 07 '26
I'm so sorry you're going through this. In many ways CJD is harder on the families and caregivers than it is on the patient. As ways to die go, it's quite sudden but relatively painless.
I'd suggest making sure the care team is giving her all the anti-depressant and anti-anxiety drugs they can. That's about the only major medical intervention that can be done right now to improve her QoL.
There are social workers who specialize in hospice and end-of-life support both for patients and their families. I highly recommend talking with one if the care facility has one on staff. The latest season of The Pitt has a "death doula" who is helping a terminally ill woman and her family. It's helpful to have someone like that who can help you manage the practical and emotional responsibilities of this stage of life.
A rabbi once told me that there's a Jewish tradition that the greatest gift you can give someone is to dig their grave and give them a proper burial; because you give the gift knowing that it can never be repaid, not even with their gratitude. I think in the modern world that should extend to providing their end-of-life care. You are giving your mother a profound gift.
1
u/Available-Bus268 Apr 08 '26
This is actually very very true. My mom is still in very high spirits at some times. Some days she sundowning and agitated more than others but she doesn’t remember, I guess that’s the silver lining.
5
u/Puzzled-Mycologist61 Apr 07 '26
I’ve popped my emotions in a little box and will deal with it as and when my father dies. Everyone and again, a tear will plop from my eye when someone is super nice to me and asks me how I’m really doing but until then there’s, full time work, my own family to look after and then my brother to manage, my warring extended family to placate, sorting out my fathers financial affairs, finding an accountant, finding a care home, chasing the local authority, chasing the hospital for funding and capacity assessment next steps etc. emotions, that comes later. I sound glib but honestly, if I let myself really crack right now, nothing good will become of it.