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Prior to her move, I went to see her and realized that she was more withdrawn than I had ever seen her.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.
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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. 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.
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.
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.
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.
it seems your grandson is speaking VOLUMES by just putting a hand out to her! How wonderful!! God bless the little children.
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
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.
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!
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.
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!!
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.
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.
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
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.
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.
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.
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.
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!
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.
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. :)
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.