Follow
Share

I've found this forum to be so helpful over the last few weeks and wanted to share my story in hopes it helps someone else.
My mother has been a fairly functional schizophrenic since she was in her late 20s. I was eight at the time of her diagnosis and seeing my mom suddenly turn into someone I didn't know was terribly scarring for me. My relationship with her has always been watchful - monitoring her every mood for a hint of the next psychotic episode so I could be prepared. I never was. I am always ill at ease around her as a result and to this day, I am still paralyzed in fear every time she doesn't act "normal."
Like many schizophrenics, she's been a heavy smoker and is now in the final stages of COPD. The memory loss due to the vascular dementia really started to kick in after my dad passed away last year. So we eventually got her to agree to move into assisted living.
My mom was lucid when we moved her originally and we even had some enjoyable visits. Then she contracted RSV. After that hospitalization and moving her over to the hospice program, the dementia really kicked in. Daily around 1pm she would loop over and over about being out of cigarettes. She would sometimes get dressed and say she was going to walk to the store to buy them (she's on 6 liters of oxygen so she could never have done it.) Many nights she would call the hospice help line saying she was dying or being held prisoner. Mind you she went from lucid in March to sundowning by July.
As a result of this behavior and an additional hospitalization (she asked to be taken off of hospice at that time), her assisted living facility did not want to take her back. With her litany of health concerns (COPD, ileostomy bag, dementia, schizophrenia) it seemed impossible to find her a decent place. But, I was very fortunate to be guided to a placement agency who found her a private home facility with 24/7 1:1 care. Yes, she is paying out of pocket for it at the moment but they assure me that they will be able to take Medicaid in a few months.
She's been there a week. The day I moved her in she called me and begged me to come get her. The second night she called me demanding that I get her out of there, that I was abandoning her and ashamed of her. She also told my aunts she was waiting for my dad to come pick her up (she occasionally forgets he died.) My brother and I went to see her after a few days, hoping she would settle in with routine and increased meds. It was a heartbreaking visit. We managed to get it through to her why she was there, that she would be staying there, and that we would make the best of it. She sobbed throughout the entire visit as she came to terms with her situation. I have to mention here that prior to this episode, my mom had not cried in probably 20 years. Not even when my dad died. We think it was due to her medications. But there she was, sobbing as reality finally set in. It's been a week and a half now. She's very depressed but has not asked about going home.
Like many of you, I contemplated walking away for my own sanity and health. I have been having panic attacks constantly, unable to eat and drinking too much to give myself some relief. But I finally feel like we turned a corner. It's her journey and I can't walk her path for her but I can hold a hand out to steady her as she navigates the obstacles in her way.
Be sure you ask for help. Tell people you aren't okay. Accept hugs from nurses and caregivers. Ask a friend to sit with you when you don't want to be alone. Avail yourself of organizations like hospice and placement agencies. They are angels on earth.

Find Care & Housing
I’m really sorry about all of this. So sad. One thing stands out, though. She might not have had to have RSV, which kicked off much of this tragedy, because there’s a vaccination for that.

We had ours last year. No pain, no reaction. Only one shot. No booster every year. In our case, Medicare paid for it.
Helpful Answer (0)
Reply to Fawnby
Report
PeggySue2020 Sep 19, 2024
I turned 60 last month, and Kaiser did not tell me I could get this shot. I’m sure I could have if I brought it up. Maybe I should have.
(0)
Report
In response to your reply to me.

They are called filial laws and very seldom used. They are on the books pre Medicaid, SS and Medicare. If used, income of the children is taken into consideration. In the time I have been on the list, only once was it used. A woman visiting her son from Greece was hospitalized to the toon of 80k, I think. When she was discharged she went back to Greece without paying the 80k. The son was sued by the Hospital and they won. But, he had money.
Helpful Answer (1)
Reply to JoAnn29
Report
itsgoingtobeok Sep 19, 2024
Oh thank goodness!
(1)
Report
See 1 more reply
We have schizophrenia in my family as well as bipolar. As a child I was around the schizophrenic a lot. My heart goes out to you. This is tough as a child as well as for an adult.
Helpful Answer (1)
Reply to brandee
Report
itsgoingtobeok Sep 19, 2024
My heart goes out to you as well. Thank you for sharing. ❤️
(1)
Report
You are lucky in the respect to found an option for Mom. Not all people who come to this forum have the resources where they live and have to walk away.

I agree, very well written. Your post may help someone else. Could you please fill out your profile so we have a quick reference to how your dealing with your caregiving journey.
Helpful Answer (1)
Reply to JoAnn29
Report
itsgoingtobeok Sep 18, 2024
I am very fortunate to live in a state where there are plenty of resources for my mom. I have been horrified to learn that in some states children are held financially liable for their parents. This needs to change. I hope I can help others by contributing to the forum.
(1)
Report
Thanks so much for sharing your journey with us.
I welcome you to the Forum and I hope you will stick around because there is so much you can contribute to help others given how articulate and well-written you are.
Again, welcome. Thanks for your honesty and your story.
Helpful Answer (1)
Reply to AlvaDeer
Report
itsgoingtobeok Sep 18, 2024
❤️ thank you. I will for sure.
(0)
Report
Wow, this is powerful. So glad a good place could be found for your mother, with all of her very serious issues and needs.

“I was eight at the time of her diagnosis and seeing my mom suddenly turn into someone I didn't know was terribly scarring for me. My relationship with her has always been watchful - monitoring her every mood for a hint of the next psychotic episode so I could be prepared. I never was.”

This is heartbreaking. I can only imagine the pain having a severely mentally ill parent causes. I hope as time goes by you are able to focus on YOU.
Helpful Answer (1)
Reply to SnoopyLove
Report
itsgoingtobeok Sep 18, 2024
Thank you for seeing me, SnoopyLove.
(1)
Report
See 1 more reply
Ask a Question
Subscribe to
Our Newsletter