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Prior to her move, I went to see her and realized that she was more withdrawn than I had ever seen her.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