How do you care for someone with Dementia and Schizophrenia?

My mom recently moved to an assisted living close to me. For the last 35 years, she has had periodic psychotic episodes that resulted in hospitalization - and all of them have involved religious thoughts and issues. Many of the episodes involved actions that were humiliating to her once she was stabilized. She was diagnosed with schizophrenia at that time (she was 50) and it is somewhat controlled by her meds. Now she has the added diagnosis of dementia.

She was raised in a cult-like religion that was guilt-based and still goes to that type theology like a moth to a flame. She feels that there is a list of requirements for salvation that she can never achieve, but constantly strives anyway. Logic does not work with her.

She moved to an assisted living closer to my brother several years ago, but he was not involved with her on a day-to-day basis and she would periodically spiral out of control until she landed in the hospital and then we would start the process again.

So we moved her here a few weeks ago and when we went through her belongings, every book was either a Bible or religious material and there were stacks and stacks of papers that she had typed or written "her story" and long explanations of her religious beliefs and scripture verses. Every CD and DVD was a sermon. We (my brother and I) were both grieved to see that and really know the depth of her agony. She had stacks and stacks of religious tracts and from experience, we knew that when she was headed for another psychotic episode, she would become frantic to "share the gospel" with everyone, passing out tracts, until she would lose sleep and lose her grip with reality, do something totally bizarre and public that could not be ignored and end up back in the hospital.

Prior to her move, I went to see her and realized that she was more withdrawn than I had ever seen her. Many of her possessions were missing and she was wearing mis-matched clothes - and she had always been meticulous about the way she looked. So we agreed that she should move closer to me so that I could help her. She was very excited about the new apartment and new furniture and new clothes, but she absolutely will not connect with any of the other residents at this new facility. The staff is wonderful and keep me informed, but all that she is interested in is her Bible and what someone's denomination may be. We take her shopping or take her to our house and even when her greatgrandchildren are visiting, she is not interested in anything that is going on.

She sits in a chair and naps or reads her Bible or copies Bible verses. She is now wearing me down to help her find a church. She is not interested in any of the other residents. I will her if she has met any of the other residents (I've been there when they've reached out to her) and she says things like, "If they won't talk to me, I won't talk to them." I know that she's already made a name for herself because according to the staff she's asking people if they are saved and what church they belong to and outside of that, cannot be engaged in conversation. Many of the residents without mental issues of their own are now avoiding her.

What do I do? Do I help her get to a church? If she can't even make conversation to a person next door, how will she cope in a new church?

How do I help her without losing my mind? I've tried reasoning with her and you can imagine how well that went. Today she told me that she was happy at the other assisted living because she had friends and a Sunday School class. Of course most of her friends were in the same shape mentally that she is or were tender-hearted toward her situation. A part of me desperately wants to say - it's her life, let her go - and another equally desperate part of me wants to protect her. But one thing is for sure, I've lost perspective.

Have any of you dealt with anything close to this? I did read the first few months of caregiving can be the hardest emotionally and I am clinging to that - that either I will figure it out or get used to it.

Answers 1 to 10 of 31
Most 'facilities' have visiting 'pastors' or priests, or rabbi's that come and visit with residents. There is nothing wrong with what your mother is doing (in her eyes) or the eyes of the Lord. What is perceived as being 'wrong' in the eyes of the staff is that they are not understanding where your mother is coming from. Her deep rooted concern/upbringing is definitely affecting her behaviors now, much like a person that was tramatized in the past and is now distrustful of anyone that reminds them of that experience.

Why not have a 'visiting pastor' visit your Mom and talk to her on a regular basis. Doesn't this facility have services on campus? Surely this is not an unreasonable thing to expect, as they say: "the closer to the end, the closer to God" we are!

I would allow, even encourage her to continue to read the bible and then ask her what "Jesus" would do instead of asking what 'faith' others are. Perhaps this is her only way of communicating with others!

There was a woman in the facility where my mother was, that would carry on a SERMON after dinner! We would just join in with her, so she felt comfortable, and within ten minutes her praises to the Lord were over and she was happy! Isn't that what we want for all? Happiness?

God bless your mother, tell her to just relax and be happy. She knows the word, sometimes you just don't have to say ALL of them to get your point across.
I hope you don't expect her to give up her Christianity for you.
If you have rejected God, Christ & Bible that is your choice; but she has embaced her faith.
Please do not deny her the relationship with God she desires.
As has been said; ecourage her faith and find a church/pastor to help her on her journey. Is this so much to ask? Are you afraid a little may rub off on you?
She's not psychotic just because she has faith. If that is the case, then only the psychos are going to Heaven.
Oh - I certainly was not clear in my explanation. I not only have not given up Christianity, I'm on staff at a church and often my faith is the only thing that keeps me going.

The hard part is that this gives HER no peace. When she is witnessing and praying, reading her BIble and copying tracts and verses, she is wringing her hands and crying and extremely anxious. which then leads to another episode.

Yes, there is a church service there and the people are wonderful. However, even though it is a non-denominational service, the sweet people who do this every week are from a denomination that she thinks will not be saved. So she is distressed by that and won't attend.

I'm not taking her God away from her. If it gave her any peace, I would never have posted the question in the first place. I would have been thankful. I'm not talking about a normal person with a normal faith. What I'm trying to describe is torture for her and torture for those who love her to watch.

But thank you both for responding.

And thank you for the "hug" MiaMadre. :)
And to further try to describe the situation: this is the kind of torture that caused a once quiet, reserved woman to run screaming down the aisle in the middle of a televised church service so that she can witness to the entire congregation during the sermon.

This is not a peaceful situation at all. Over the years she's had discussions with many people - including pastors - who try to give her comfort and reassurance, but, again, this is not a normal situation where logic can give her that peace.
From what I have read here and seen in my own Mom (who also has dementia), obsessiveness is part of the disease. If she already leaned that way about religion, then it makes sense that is what is getting worse. I totally understand how this is not giving your mother any peace. With my mom, she paces and is constantly up and down. Some people told me to just let her walk, but it upsets her and she would also wring her hands and cry. She would ask me to help her stop.

Have you talked to her doctor about the obsessive behavior? I'm not fond of drugs as the first approach, but they can be helpful. In my mom's case, it took several weeks, but an mood-leveling medicine has helped to reduce her pacing and anxiety. She still does it some, but is much better.

One thing to know, logic does not usually work with dementia patients. You can try to find someone from a church your mom "agrees" with to visit her, but in her mind there may be no one who is as good. You might be tempted to try to explain to her how to "live and let live" - enjoy her religion and not quiz people on theirs. But I would be surprised if she is capable of doing that. With my mom, once a specific action or thought is in her head, there is no getting rid of it. It has to run it's course.

Good luck!
"One thing to know, logic does not usually work with dementia patients." I am finding that out firsthand, Julie! I think I've explained something and sewn it up and gotten rid of all the loose ends and I'm patting myself on the back thinking what a great job I've done and the next thing I know, she's on the phone telling someone that I'm losing it. My brother and I have to laugh about that. He would do the same thing when he would visit with her - listen to her, talk to her and reason with her and think that he had really made progress and before he could get to his car she would call me and tell me that my brother was a know-it-all who didn't know a thing. Whew. I sure hope this is all character building.

I will talk to her doctor because the obsessive behavior you describe is what I'm seeing. We (including her medical team) are trying to find our way in this. We don't have much medical information on her because she was free to go from doctor to doctor on her own until now.
Top Answer
PLEASE make sure that you mother isn't suffering from a urinary tract infection (UTI) which seems to exasperate ANY odd behaviors they have. It's easy enough to check for, and 9 times out of 10 there is a UTI!

My heart breaks for those of you still walking down this rocky road. Elizabeth, your faith will help you, Julie... you are so right, the deep seated beliefs will surface and it can be ugly sometimes. Castoff: I think we all feel like you do when faced with a non-believer. But Elizabeth has her faith to help her, thank GOD!

Here is my personal experience: my mother was ALWAYS a child of God, said her rosary every day, went to church, taught us, corrected us when we didn't follow our faith, but in the last six months of her life, her entire demeanor changed. She would start out saying the rosary, and then stop and CURSE out someone or something, then bow her head again and continue with her prayers!!

The things that came out of her mouth were unbelieveable. She said words and phrases I NEVER knew she could speak, and when she did so, at first I was startled and actually at a loss as to what I should do! One day she did this in front of the pastor, and he just sat there and listened to her, without word or judgement. Then when she stopped he welcomed MOM back! The peace that he had was truly inspiring and I knew that if we just waited my 'mother's true spirit' would return to her.

When it happened and he wasn't there, I tryed to just listen and be peaceful, but it wasn't working, so I started saying the Lord's prayer and before I finished reciting it, my mother joined in, and then she was quiet. This didn't always work, but I did tell her time after time, to get ALL that cursing out here on earth, because there is no room for it in heaven!

One day she asked me "Why is God doing this to me?" At first I didn't know what to say, but after thinking about it, I gave her the same answer she would give me when something didn't go my way: "This is God's way of testing your faith, and He KNOWS you will not let him down" "Your place in heaven is waiting, Mom, don't worry"

If the facility is familiar at ALL with Alzheimer's and schizoprenia, they should know the behavior your mother is exhibiting is part of the disease. I don't know what the answer is, but I know that with the support of this group you will feel less 'out of control' and more like the rest of us. God bless you and your mother!

Sometimes we have to just stop and let all hell break loose, so we remember what heaven is.
You haven't mentioned whether she is seeing a psychiatrist or not. The obsession could very well be from her schizophrenia also. Many schizophrenics get better with medication and then as soon as they are better, stop taking their medication. This could explain her downward spirals. Many with schizophrenia are obsessed with religion. I would definitely talk with her doctor about her dementia, but also with a psychiatrist since it seems her behaviors are very much related to her mental illness and please don't wait or she could have another psychotic break soon. You might also want to research everything you can on schizophrenia and contact the National Association for Mental Illness (NAMI) if you haven't already. They can help you understand her better. Please keep us updated.
elizabeth, First of all I'm so glad to hear that your brother and you are on the same page so to speak, and have each others backs. So many times I've read on this website how siblings turn on each other, so bravo for that. Next, I don't see how your mother could have been in a 'cult' and also a Christian, that makes no sense to me. All this guilt that she is seemingly worried about it NOT part of Christianity, so that part I don't get. I agree with the person that suggested she be seen by a psychiatrist and maybe put on some meds. Maybe that would stop the screaming down the aisles at least. I also agree with having a minister come in and talk to her one on one and see if that alleviates some of the franticness ( if that was a word).
Anyway, you've got your hands full for sure. What a weird thing life is some times I swear. But God is still in control, and this thing with your mother has NOT taken Him by surprise, so take heart.
Thank you all! I feel so encouraged by just knowing I am not alone - I don't even know where to start. I felt like I wrote a novel to begin with, but didn't even touch on a tenth of it. So here goes the sequel...

Yes, thankfully, my brother and I are on the same (although confused) page. I am determined not to lose him in this - and, like you, I've seen that happen more often than not - the stress makes you turn on each other. I appreciated everything he did for Mom when she was close(r) to him and he thanked me for that and said that he will always stand by the decisions we make now. I know he did the best he could and he knows that's what I will do now.

And, yes, she did have a UTI! The doctor found it about 10 days ago and has been treating it. That - combined with the move - probably did much to put us where we are now.

Her schizophrenia is controlled by meds, but as you said - part of the illness is thinking that you're better and getting off the drugs, because I know the side effects are unpleasant. Here her meds will be administered to her and she is closely monitored. The hallucinations and voices are kept under control for the most part with the medications. What a cruel cruel disease that is. Her episodes have always been in direct response to thinking that she heard the audible voice of God telling her to do these things.

As for the cult and how she could be a believer. Here's what I understand from my uncles' perspective who lived through the same thing and for the few times that I attended when we visited my grandmother. While the pastor preached from the Bible, he eventually set himself up as the ultimate authority on what would be considered sin. From the pulpit he would name names and call people forward to repent for things like staying out past midnight on Saturday night...that's the first one that comes to mind because I remember seeing that first-hand - and the sinners came forward tearfully to confess, that, yes, they had indeed lost track of time at the bowling alley and had gotten home at 12:15. These "sins" were treated with the same harshness as someone who murdered. And if you didn't repent publicly immediately during that service? Your name was published in the bulletin next week as being unrepentant and, therefore, it was questioned whether you were truly a Christian. As a child I was terrified of the man and his power over the people. There was always crying and yelling and hell-and-brimstone preaching. As a three-year-old child, he told me that I was going to hell because I did not know the "plan of salvation". I'm sorry if that offends anyone, but that is harsh to tell a baby who is still singing "Jesus Loves Me" and looking at the picture of a smiling Jesus holding little children.

Thankfully, when she was grown and married, she joined a mainstream, conservative religion and I have no doubt about her salvation or her sincerity. Just somehow those early years embedded themselves in her heart and her mind and she is tormented and no longer able to reason out truth. Sometimes she will say, "I just wasn't a good enough Christian to be able to stay in that church." With her illness, she can no longer see that the fault was not hers.

Over the years - when she lived away from me - some of her pastors in these reasonable, conservative churches would communicate with me to let me know what was going on. She wanted to be rebaptized frequently or would go forward at the end of every service just to make sure she was saved once the schizophrenia "started". I know there were conversations repeatedly by them to assure her of her salvation, as there have been by my brother, me and my husband. Nothing gives her peace for long.

She met with a psychiatrist today - who is reviewing what little information we have from the psychiatrist who treated her during her last hospital stay in another city. I have not met with him yet, but have spoken to him on the phone. I am hopeful. And, with his help, I will educate myself on these two cruel diseases and we will just take it a day at a time.

And I thank all of you - who have your own hands full - for helping me navigate this. I reached out to you at a very low and frightening point and I am touched at your concern.

And this really did turn into a novel.

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