How do you care for someone with Dementia and Schizophrenia?

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.

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.

My mom and yours have something in common - they are both doing what they think is right. It is wrong, it is crazy, it is hurting them and the other people that they could otherwise have a caring relationship with, but they are doing what they think is right and doing it faithfully. They cannot admit to being wrong because they do not understand forgiveness. My mom will not participate in much of anything any more because it is difficult and she may not do it well. She also mistakes imperfection and physical limitation for moral weakness, I guess. Sometimes I think she wraps herself in her shame like a comfortable blanket. I try to console myself for the things we are missing out on by reminding myself that at least she is trying to do right, however misguided, and I should not try to take that away from her...for my mom, its all she has left to do. Sorry I do not have an answer, only commiseration!

LIZ:

Nothing wrong with embracing our faith, but sometimes we run the risk of becoming so Heavenly-minded we become unable to function in social settings -- even among other faithful. What on the surface appears fanatical is another manifestation of her psychosis, so I suggest you introduce her to some pastors/priests she might be willing to listen to to remind her how to be Earthly-good again. If you can find one who's a psychiatrist at the same time, it'd be perfect.

-- ED

I would like to go around to all of your "walls" and thank you personally for your words of wisdom and concern. Rereading all of them this morning brought me to tears of gratitude.

So much wisdom from people who have walked this road. Until yesterday, I had never heard from anyone else who had dealt with the religious obsession issues. In 35 years of this. Never. It has always been a puzzling problem for us - how faith that can give such great comfort to us can cause such great torment for another. Now that this has landed at my doorstep, so to speak, I realize that I can't just sit around puzzled any longer - I need a way to cope and help her cope, as well.

We're less than a month into this. We are blessed beyond measure that we have a team of caregivers at the assisted living who are truly mericiful, as well as capable. I watch them with her and they try to involve her in activities and search for ways to reach her. They've learned that complimenting her on how she looks each morning gives her a little spark in her eyes. There is a doctor there that sees her in her apartment and she has set up nurses and therapists and physical therapists who are trying to get her to the highest quality of life that she can achieve at this point.

It's hard to let go of the mother of your childhood. I pray daily that I will never put my daughter in this position. And I know that if my mother had any control over it, she would feel the same way. Today I have a little better perspective on what I need to do and that I am not alone with these emotions. I sincerely do not want to have any regrets when this is over. Thank you all again.

Bless you, ElizabethGrace! The obsessive compulsive behavior that comes with dementia is bad enough but to have started with schizophrenia and then adding dementia - I just cannot imagine. I have dealt with both separately but I am fortunate that my dear little Mom (94) just has dementia.

I may be wrong because it may not have been stated but I didn't read anything in your opening comment that indicated violence of any kind. If there is no violence, I would view that as the silver lining! I have watched, years ago, as my 4 month old baby was thrown across the room by my sister-in-law in a moment of anger. Only later did we learn that she was schizophrenic. Between that and raising a daughter with epilepsy, I have learned to always look for the bright side.

MiaMadre, God love her, has the right outlook. I know you hate to see your mom frantic but if you can just love her as she is and find those things that can be viewed as blessings, you'll be more at peace yourself. You have done the right things for your mom and for the right reasons. Your peace may, in some small measure, help your mom also.

Elizabeth Grace, what a perfect name for you to have. You are doing what is best for your mother, and thank GOD have the staff to help you. I know that she will get through this with YOU by her side.

JollyJ: my journey with my mother through Alzheimer's has ended. The final lesson my mother taught me was how to find PEACE in the midst of turmoil. I knew that there was little I could do but sit with her and allow her to get it all out. I was careful not to antagonize her, and some days we would just sit for hours, while she stirred a cup of tea with a spoon. At the end she was unable to speak, and that broke my heart, I would have welcomed the 'rants' to total silence. But then I realized that was a part of this terrible disease. My mother isn't gone, just gone ahead, as she has always done! And her last gift to me was PEACE!!

Elizabeth,
Sorry, I misunderstood your original post. Also sorry that folk's faith can be so twisted by a clergy member in whom they place their trust.
As MiaM said: Pray with her. Hold her hands while doing so.
"If any two agree in prayer....".
I might add: Concentrate on the peaceful, loveing & joyful scriptures with her; steering clear of the judgement & justice. You know what I mean.
With the dementia comes regression. My mom forgets what she had for lunch but remembers & reiterates much from her childhood these days. Going back in her mind brings back the condemnation and damage of that twisted pastor she once had. The wringing of hands should not be by those of faith so please keep trying to assure her of her salvation. Not she that was not good enough but the pastor that was not of God. (Careful...that may backfire if she's been too engrained).
You are on the right path & doing the right thing by her and our Lord. I am sure you will pass this trial/test with flying colors.
God comfort you & your's.

You are right MiaMadre, your mother isn't gone. After watching my daddy go through Alzheimer's, I decided that he had already gone through his hell and would go straight to heaven. Some religions believe in purgatory, some believe that, like Jesus, you decend into hell before going to heaven. Me, I believe that Daddy went straight to his place in heaven and that he is waiting there for all of us. I hope that someday soon, Mom will join him. I will miss her but I will be so happy that she will be where she has wanted to be for years.

So MiaMadre, enjoy that PEACE!

ElizabethGrace, I wish you all the peace that God can give you! Just remember, He will not give you more than you can handle. You just may need to dig deep but He has faith in you!

Have any of you read "The Hedge People" by Louise Carey? I ordered it from Amazon and it just arrived today. I can't put it down. She tells stories of caring for her father-in-law with dementia - many of them humorous, if you take them for what they are. One of her prayers at the end of a chapter was to not live in sadness for what they are not, but accept where they are. I'm not there yet.

She tells many stories that remind me of listening to my very funny little 4-year-old grandson. Things he says are so touching and funny and I enjoy him immensely. I will make an idiot of myself just to entertain him or join in his fun. He's sitting by me now laughing at a Charlie Brown movie he's seen for the 20th time. Today, I took off my shoes and went down an inflatable slide with him just to hear him laugh. But it's hard to just let go with my mom - I miss her dignity and being capable. It's so hard not to compare the desperate and confused person she can be with who she once was.

Way honest there, but that's where I am now. I don't intend to stay stuck here, but for today that's the truth. At this point, I would just be happy if she was happy. Forget confused - bring it on - just peace and a glimmer of happiness for her would go a long way.

But it's been a good day with our little boy. 4 nights with this little bundle of joy. Good medicine. He sticks to us like double stick tape, cracks us up and wears us out. Tomorrow he'll put on his policeman costume and go see MiMi. Maybe he can sprinkle some of that joy on her.

Elizabeth: I am SURE he (your grandson) WILL sprinkle his JOY On her! Children have such a positive effect on the elderly, like little energizer bunnies!! And he won't judge her, or mind it if she doesn't make sense, it truly is a Godsend to have children around the elderly!

It will take time for you to accept where you mother is in her journey. Sometimes there is little we can do but just observe. God Bless

Here's a funny story about my little guy with his great grandmother. I told him that she would need his help when she walks, so he jumps up and holds her hand anytime that she gets up. Compassionate little soul. The other day when everyone was visiting us, she decided that she wanted to sit outside and watch him and his brothers play ball, so he took her by the hand...and led her right into the bushes. She even laughed at that. What a pair.

'Whoever receives one little child like this in My name receives Me'.....

it seems your grandson is speaking VOLUMES by just putting a hand out to her! How wonderful!! God bless the little children.

I struggled when I first brought Mom to live with me even though I had been through Alzheimer's with Daddy and Mom has been heading down that path for years. It was the first time, though, that I was with her 24x7 and actually saw everything. Whew!

Over time, I am adjusting (and MiaMadre's comments have helped A LOT) and I do my best now to keep a straight face when Mom is acting like my 2 year old grandson. Just the other day it was so funny! I was telling her that we needed to change her Depends and put on fresh socks and she started running (as much as you can run at 94) around her room saying loudly, "La la la la la la la..." It was like a child with their fingers in their ears when they don't want to hear you! I did everything I could to keep a straight face!

So the good news, ElizabethGrace, is that at some point, you will find that peace and acceptance of her as she is now and you'll find that new way to love her for who she is. It is a journey, and don't be surprised when you slip along the way, but you'll get there.

Elizabeth,
Sometimes God provides the balance in our lives Himself.
Sounds like your grandson is the joy balance for you. I'm so glad you have him to shake things up.
Our human experience....laughter & tears.
Grateful to God in all.

My Dad - diagnosed with alzheimers and schizophrenia in '08 at age 85 - is very much like your mom. Church quit being a good idea when he began to tesify (extensively) every Sunday that God had told him that the earth was a prison planet and we were here to be trained so that when we die, we'll be sent to other planets to be warriors and take over the planets for God. Dad's belief in God is still strong, but the specifics of what he believes have gotten tangled in the schizophrenia. It's worked best to keep him out of public worship and let a pastor who is familar with the futility of challenging Dad's mental-illness-inspired beliefs hold "private services" with him - makes Dad feel special and chosen and still in touch with God without subjecting others to a forceful testimony of false doctrine.

Leslee, I'm so sorry! I think your solution is perfect and very kind. Thank you for responding to me. Until this site, I wondered if we were all alone in this situation.

Unfortunately for us, Mom is still determined to get to a church and told me yesterday that she has managed to get a ride to a church in the area with 5K people. She won't talk to anyone about anything, but somehow she has managed to find someone to give her a ride to church? I have to remember that I have a life going on and she has nothing to do 24x7 except to figure out how to get what she wants - which is to get to church. But it still surprises me that she comes out of her shell enough to manage this.

I've talked with her psychologist about this and I guess I will let it continue until there is another incident. At the psychologist's suggestion, I have ordered a medical alert bracelet with my name and number on it as an emergency contact Seriously, she cannot find her way to the bathroom in my home 15 minutes after she was just there. So I cannot imagine how she will manage this.

I hope that she will feel overwhelmed at the sheer size of this church and decide on her own not to return. She went to a different church last week (again, figured out how to get there), but said she wouldn't go back because they had drums in the service (too contemporary).

I'm trying to back off and not do battle with her on this. It was agonizing to me and I'm not going to win. Maybe it will be like driving - if she gets herself into a situation and gets scared, she will willingly give it up. (Sure. Right. And this will be right after "world peace".) :)

Please keep me posted on your dad.

Ed is on target with his comment about psychological issues hiding behind religious masks. There are only two books written on this subject. Oates, Wayne. Behind the Masks: Personality Disorders in Religious Behavior. and Pate, C. Marvin Sheryl Lynn Pate's Behind the Masks: Personality Disorders in the Church.

THANK YOU! I have never heard of these books. I will order them immediately. I thought I had done an exhaustive search online, but obviously, I had not.

Those are two rather hard to find books and no one seems to want to touch this with the exception of a book, Overcoming the Dark Side of Leadership by McIntosh, Gary L. & Samuel D. Rima, Sr. That book is focused more on clergy in the following areas.
i. The Compulsive Leader
ii. The Narcissistic Leader
iii. The Paranoid Leader
iv. The Codependent Leader
v. The Passive-Aggressive Leader

Another book, Weiser, Conrad Healers: Harmed & Harmful, goes deeper but again is focused on clergy. What caught my attention was his statement that it appears we have more with borderline personality disorder going becoming clergy than before.

What your mother experienced was spiritual abuse. There are several books on this.

I wish that she or her immediate family could acknowledge that they had been spiritually abused, but some of them will go to their graves believing that the only lack in that church was in themselves. It is very hard being on the outside and not understanding how someone can really and truly fall for what is going on in those situations.

I found the books on Amazon. I have the book Toxic Faith, but it does not address mental illness - and again it was more from the clergy perspective. Very interesting though.

I think reading those books on religious masks and some books on spiritual abuse will help you see why they can't see beyond the F.O.G., i.e. Fear, Obligation and Guilt of the spiritual and mentally abusive religious system that they are in. There are cults who do this and there are cult like Christian groups who do this and there are Christian groups who are doing this, but it is done so smooth by wolves in sheep clothing like a Trojan Horse. The sad thing is that Christians lay back and take it instead of standing up to these people, but sometimes this is because that abusive person is their relative or they have to live around that person. Such namsy pamsy Christianity is not effective against spiritual and emotional terrorists in churches.