Hello, I'm new to the caregiver life. My mom is 69 and has dementia type symptoms with delusions and hallucinations. She had been involuntarily committed from 2/27/14 until 3/21/14 between 3 medical hospitals and 2 mental health facilities in wa and or. The last place tried to commit her for a further 180 days after they gave her a vague diagnosis of Alzheimer's type dementia with psychosis nos. She has only had a CTscan and bloodwork at the first edicts hospital and the last mental health facility in or. The last facility lost their case and I brought her to live with my family and I (husband and 2 kids 11&13yrs old). Our house is to small for all of us and as it was we were already financially struggling. Since bringing her home I have had to quit my new job to be home with her. I have tried every resource I could google and every other one anyone recommended. I had a memory care facility lined up but the 'diagnosis' was not confirmed and she was denied Medicaid thru sr&disabled services. She only qualifies for $15 a month in food stamps which won't even start till the intake appt in June that somehow will qualify her for Medicaid and maybe a program i can be paid as her caregiver and maybe other programs, a big Maybe. We are drowning now and I am at my witts end with no support. My husband doesn't agree with helping her or anyone for that matter and since our house is to small I am sleeping on the couch, my son is in my room and my mom has his room. My moms psychosis started this year in jan after she gave up trying to save her home she owned of 20 yrs that the city in wa kicked her out of and boarded up nov 2012. The whole 2013 yr was spent with her trying any and every possible help she could find and nothing. My mom is a retired registered nurse for over 30 yrs. proud, stubborn and always had what she needed. Her mental state now is her personality exasperated by 1000 and from her hiding, stealing, lying, hoarding, forgetting, calculatedly remembering, and out right belligerent behavior my family is having a hard time. The delusions and hallucinations are mild but control her every thought. The fascinating part is they are based on real people and events but the outcomes are opposite of reality. Like she says her house is being moved to Alaska and she is getting all the money from it, when actually her house is in short sale and she is only getting a tiny amount; her 'husband' she waits for with everything she owns (not
Much) packed and ready to go with to her 'home' in wa and is a real person but in reality is an old neighbor that she absolutely despised because he called the animal control with complaints about her barking dogs. She actively converses with them and only believes them and I and anyone 'real' is a liar. She refuses to think anything is wrong and that she is now an empath who can talk to animals as well. Overwhelming to say the least. I one of there kids and the only capable one to be able to care for her. Well supervise her is more like it. I have literally exhausted every possible resource that or is supposed to have and nothing is available. With all the 'parents are better with family' garbage they make it impossible for that to happen. She refuses to go to a dr and get the necessary tests done to confirm the 'diagnosis' cuz she says this is how she's been. I finally got her to say 'she need her head checked' but now she's adiment that she's going to an appt with her dr in wa. Since being with us she has improved 100% and has only attitude, refusal, denial, and some mild cognitive issues. She did share with me that when she bends down and stands up she get dizzy and 'it starts again' which is the loud buzzing in her ears, which is a huge concern and points toward something medical. Without the money and resources needed to move into a bigger place or even place her we are slowly falling apart as a family. I know what I'm doing in my heart is better for her but with no support from anywhere I don't know how long I can do this.
It's going to be ok. You have done NOTHING wrong. It is vital to find out what exactly is going on with your mother, and that is what you have got under way. You are RIGHT to have done that. Honestly, it'll get better for her from here.
As for your husband, please, as far as you can, just mentally take time out. He's broken down under the strain: it's not admirable, but it's understandable and it could get healed if nobody says anything they can't ever take back. Just for now, try to let him be.
Keep in close touch with the hospital and don't be afraid to ask questions - write down the answers, including names and contact details, because you won't remember what's been said.
I know guilt isn't voluntary but I PROMISE you you have no grounds for guilt. You are doing the right thing. Thinking of you, best of luck x
Well, first that night I talked to the social worker that actually listened, asked me questions, and was genuinely concerned for my mom, not his ego ad who was to say the least was fantastic. And the dr was beyond good. He said the words I have been waiting for, reading about and told by other drs I've called should happen. 'I think we should put her up on the ace unit and make sure there's nothing medical going on first' I almost fainted.
Ok ok I can't stand it. Not only did the er doc do what he said he would, despite the hospitalist being doubtful. in less than the time it took me to drive home she was taken to a comfortable in a huge room, on a floor for Geri medical PTs. that was the first hospital ward that didn't make u feel like u were in a sterile looking meat locker. My mom is finally finally finally in the right place!
Oh it gets better-
In less than 48 hrs this hospital not only made me comfortable, that was immediate just stepping onto the floor. My mom was to. So here it goes- in less than 48hrs this hospitals staff has determined that there is no way that my mom has Alzheimer's let alone dementia!!! In fact the hospital social worker I talked to for over 30mins, who was fantastic as well, called it in talking to my mom in 5 mins. I already knew that but doubting myself and not wanting to make these people shut me out to, I zipped it. So yeah to say the least, my drive home was pretty much an out of body experience. To back up a little, the power of attorney I found from 2012 was honored so that made it much easier. Eventhough, if anyone isn't aware, there's statutes states have that say when a patient doesn't have a poa or other paper giving power the spouse, adult child and so on has the right to advocate for their relative. In wa is a surrogate decision maker, here in Oregon it's similar. I don't know if every state has it but it's worth finding out. But as I've found out in wa, nobody that should know about the statute including lawyers have any clue it exists. And it is almost impossible to get them to honor ur rights.
So from the minute my mom got to the floor she finally started receiving the help she so desperately needed. And get this, she knew it. When I came to see her the next day and the first day in her room it was like night and day compared to every other hospital stay that I could hear her misery on the phone. I was here and she was in wa at the time when this all started.
The look in her eyes was disappearing. It's a look of anger, sadness, frustration, and well to be honest a lot creepy psycho movie like. So finally feeling like, after all this complete hell she's gone through for so long and never receiving the respect and proper care from the 'professionals' she deserved and needed so badly. Finally she's going to be taken care of. That first day she talked to a psychologist for a long time before I got there. And, as I knew it would help to talk, I was blown away by how much more it did than anyone would think. That first visit was amazing. she could feel my relief. And to further help I wrote her a note in the er telling her the hospital name and city. As well as pleading with her to give them a chance because they are supposed to be the best in the area she needs. And through the whole visit she did most of the talking, well more like asking me questions that pertained to her but she was acting like it was about me. Does that make sense? My mom is starting to filter through her mind and trying to come to terms with the situation and why she should be there. She did add a confabulation that I to was admitted and was having scans and issues. I went along with it to keep her asking and talking. That went on pretty much the whole time. And I in turn used what she was asking me as a way to get her to think about her own issues. Without her catching on. To quickly. And then she would clam up. Psychology is fascinating. I think I was there like 5-6 hrs till she asked me to go so she could rest.
So the first day after this seemingly endless nightmare she has almost accepted being there because she knows just by interacting with the staff. I wrote her another note telling her that this hospital is going to help her feel better , please cooperate because if she didn't it would end up like all the others.
I gave her my acceptance and trust of them and she is finally cooperating. They've done, I believe as of today almost everything necessary to diagnose her and take the wrong one off. And the meds she's taking are helping. Today she looked so much better. Than ever. And she is more comfortable because of it. She's more herself to. Just all around she's soooo much better. And since the zyprexa is working I'm hopeful her over reactive body won't flip it and render it useless and cause nasty side effects.
I also talked to the psychiatrist and she wanted to know info history etc and if I thought it was possibly mild dementia or depression etc.
Wow the first willing psychiatrist that wasn't a complete disrespectful jerk.
So yeah finally after so much unbearable, unimaginably rude professionals with a god complex hell bent on doing everything possible to not include family and stroke their fragile existence my mom is being taken care of. And the best part- She's gonna get better!!!!! Not saying there won't be more curve balls and tears but for now the final words that will complete this new circle of hope - a final, thorough DIAGNOSIS!?&! That by the way I believe will be determined by the neuro psych eval she did today along with all the other tests she did. Yes I said 'she did'. Not meaning to leave this out - she's still hearing voices, one so far, and having a little paranoia, and delusions. But mild. And I could tell whatever the psychologist is doing is working. The first day she said before I left 'ill just sit here and feel sorry for myself' words of acknowledgment of feelings she's stuffed for to long.
And the feeling of confidence that I haven't felt in years was amazing enough to say 'I KNOW MY MOM AND I WAS RIGHT ALL ALONG!' And I can proudly say it was because I followed my gut feeling that hadn't stopped the whole time. The feeling so strong that it wouldn't be ignored. 'My moms not in the right place and these people aren't treating her right, I've gotta get her out of here before they hurt her' and so on.
If I had ignored it and listened to people that were thinking only of the inconvenience and told me to put her in a home, loony bin etc she would not have gotten better, or believed me. They can all suck it!! Shame on them for purposefully shutting me out. Wooooohooooo
I see SDO is in one of her preachy moods again, but demons? Please - what nonsense.
Kamdushka, hang in there; you'll make it to a better point when Mom's more settled and getting the treatment she needs.
I am 60, so I feel sorry for your mother and her predicament. Is she drawing Soc. Sec.? I would take her to the ER and then, tell them that she cannot live alone or with you. It sounds harsh, but you have to be a too and protect your kids.
After she is placed in a psych ward, again, you need to apologize to your family for bringing her into your home. You did the best that you could and that is all that you can do.
If another hospital tries to release her, tell them that she has no place to live.
What if I don't go to church or believe in anything except myself? Will u not offer me advice?
If you think that u have such a hugely superior right to come onto this forum and ask such obviously judge mental, closed minded questions that have no place in this particular discussion with the intention of using the answers to withhold advice back, because u have given urself permission to interpret this 'bible' so u can be the judge in who is worthy of hearing ur advice, well, i don't need to really say anything. U are already on ur way creating ur own world of eternal judgment.
If u think using religion as a tool to try and criticize or judge me or my situation is in anyway what 'god' intended, u should be ashamed of urself. If I thought it was ur business to know
If I am religious or go to church or not, well, I would say: if I was to believe in organized religion, go to church and need to believe there is a god so I can then not feel alone and have the power to get thru this I certainly wouldn't believe any god would condone u passing judgements on people. And I wouldn't want to believe in a go that would encourage his followers to be judge mental and criticize those that don't need to be a part of organized religion to feel whole. So for u I ask such a question using such a controversial subject is sad.
What if I said yes I do go to church, would that then make u feel as if u had a connection with me and u could then seem me worthy of ur advice? What if I said I didn't go to church? Would that then compel u to try and save me from myself? Or would it give u a feeling of superiority and u then make it ur mission to say I'm not worthy of ur advice or help? What if I said I worship a rock, on thurs between 12-2 by a river and that I have had spiritual enlightenment and the rock has given me the strength i needed to handle my situation better? Would u think ur opinions on how a rock isn't somethjng to be worshipped and cannot help me and is ur duty to point out and criticize me for not believing the way u do?
What would u say if my religious beliefs are that if I did believe in a god, that that god gave me and every living thing all the tools We need to get thru life's challenges without needing to be in a structure first in order to be worthy of his guidance?
Do u honestly think that if i go to church and have religious beliefs i could handle my life any better and have a solution sooner? Are u even a caregiver? Will I miraculously have what I need handed to me of I do go to church?
What I do believe is that if there is a god or higher power that did in fact create us and earth and life then I surely would hope he would have given us the necessary tools within ourselves and already have the answers to all out questions in our heads and all the cures for all the ailments in our earth. Why would he create us just to rely only on him?
Basically- I believe in myself. My beliefs are in each and every living thing being complex piece of a bigger picture with purpose and infinite power. My church is earth and my faith is in myself. I worship my own creations - my children. And with them the future has a little more chance of becoming better for everyone. Not that I need to explain myself to u. But unlike u, I am comfortable enough to not get offended by ur need to know if I'm worthy.
Now back to the subject at hand. Sorry for the rant and if I offended anyone. But some people don't mind forcing their opinions on people. Especially here, when it wasn't asked for or relevant.
I say this as a Southern Baptist who has had theological training every single day kindergarten through high school and Honors Theology at university, plus church three times a week. The Bible is a lot of things and sacred to many people, but it's not a medical reference.
Kudos to you!
Blimey, people, SDO only ***asked***! If you don't find a response particularly helpful, you're free to ignore it, after all?
Never mind all that. Kamdushka, this must be unbearably painful for you - how could anyone make that kind of choice? The thing to hang onto is this: you are happy - aren't you? - with the immediate care your mother's receiving at last. You're more confident that the people looking after her are interested in getting a true picture of what's going on, and coming up with some constructive proposals for her ongoing care?
So, if it's a yes to those, you've got at least a few days before you even could make any decisions about what happens next. But look at these two things together:
You say: "I cannot say that she can't come home with me. If the alternative is somewhere she will regress and never recover."
Your husband comes up with: " him assuming the worst and starting in with the hateful yelling names at me.
You are both of you predicting disaster. Don't.
Now I know you - quite rightly - were asking him for help. So, I guess, he first of all demanded your solemn promise that you wouldn't bring your mother back to your home? Which you can't give, because you don't know what the alternatives will be.
Well of course you can't. But on the other hand, you did seem to be assuming that the alternatives will necessarily be as dreadful as some of the (wildly inappropriate) options that your mother's experienced before. And I don't think you should assume that. This hospital has already taken a radically different approach, hasn't it?
Just for the next few days, go and see your mother as often as you want to. Then, when you're home, try to get your husband to agree to a no-talk zone until there is word from the hospital. You can't make any decisions or even explore any options until then anyway, so take this chance to have a break and call a truce.
Oh. And money wouldn't fix your poor mother's head, or your heart. Big hug. You're doing brilliantly.
WOW! And from a dr dr. Well if all the stuff I read and talked to about was written using one hospital as an example it would be this one. Except the er desk people. Nasty ninnys.
Yes she's getting excellent care, but, tues is the last day of the dr hold. They've already been checking in to see what I was considering etc. Especially now since she doesn't have Alzheimer's dementia. So no nursing home she won't qualify.
It's not that I think all places are horrible, not at all. In fact I had called many homes figuring out the steps. Out of maybe 15-20 in the 2 hr radius that spec in Alzheimer's etc. 1 of the contact people with all the info. That was right down a 1/2 block from my job at the time. Perfect. I still haven't met her face to face. She has kept in regular contact since the beginning and has been instrumental in just plain being there. It's very appreciated. As it has here.
The that my mom has always said she never wants to be put in a home. I've heard her say that since I was little. And after seeing her just in a hospital I can see why. She hates being controlled and told what to do when and she hates not being able to get up and walk out. She's always been that way, the worst patient in a normal frame of mind. I was just trying to do what's best and what she'd want.
Got both accomplished but came out scarred. Well worth it.
And as for him, well, not over yet. There's only a few simple things a guy considers, its not a truce but, a partial peace offering.
Now to see what the MRI said and the neuro psych eval my mom did fri. Yes she did ;-).
I would like to thank everyone who shared their stories and offered kind words. It truly helps. Now for her story. Since my last post things went ok. The mri was insignificant and only showed even more she doesn’t have alzheimers.
From the beginning of june until beginning of july she progressively began to improve even more. Surprise puppies that were sold made her dive deep into herself and she packed some stuff and for the first time in weeks she sat in front of the store from early morning until after midnight. refusing to even look at me.
I had began to be numb in order to handle his spiratic fits of angry word bashing. So I called the local police dispatch line and asked for their assistance. The sergeant and one office came in separate vehicles. They asked if I would take her home and i told them NO. The officer asked her if she would come home with me and for the first time she said yes. Further explanation to the officers and I watched my mom get into the back of the cop car on july 3 and thats the last time i will. The crying didnt stop tip the next day. From here to the hospital eugene where she had been twice prior so they knew her. I only saw her for a sec as she glared at me and looked me straight in the eyes with so much sadness and anger and confusion on her face she told me to leave. That was 2 months ago. I haven’t seen or heard her voice because I became comfortably numb. I might have cried to myself many times and a few unexpected times.
Not good to stuff that much.My sadness was to much for him again and it started all over again. Not a hint of light anywhere in my dark hole of sorrow. I desperately tried any kind of meditation, reiki and self help books i guess there called. Rhonda Byrne is the author of The Secret books. Helped so much i pulled myself out of my hole alone and handled life for a while. and as grief is one wave was just to much and knocked me down enough for him to see and lose all hope i was not having a good day and that was his que to start in with his version of my feelings.
All I have to say about this whole roller coaster from h*ll ride of my life is:
Never underestimate the power of your mind. I do not see my moms situation as one that is weird or strange. I look at it like, my mom is such a strong person that she has created her own world in order to survive such a huge blow to her soul that without strength she would not have made it to morning. I can say without a doubt that because i listened to my gut and knew my mom so well and i was sure once she started to be around normalcy and familiar people and stuff she could slowly get out of her own head. I witnessed it.
Never take anything or anyone for granted in your life. In a blink of an eye what you thought would always be there could vanish without warning.
Ive lived a nightmare that hasn’t ended. She has been in 3 of the best hospitals in oregon in the last 2 months. the state hospital gave her meds for over a month and finally conceded they weren’t helping and since she’s not improving with that one way the dr said they don’t think she’s fixable. I asked about alternative methods therapy and the dr said they don’t have the time for that.
The dr was apologetic and understanding. today isn’t the day for drs to actually practice medicine without racing against the clock.
Who’s the victim in the end. The woman who gave me life has had her own life dismissed on paper and filed away with the rest of the ones nobody can take the time needed for their recovery.
Im working again and have a straight line to my goal to move into a place with more land and a mother in law type small space for her. Unless I win the lottery moving isn’t going to happen warp speed but it will happen rather quickly. All i need to think about is the end result.
Having a plan is great. Even if it doesn't go as expected, at least it gives you some idea of where you are - much better than feeling lost and not knowing which way to turn.
So where is your mother staying for now? It sounds as if you're able to keep close tabs on how she's doing. Not seeing her must have been hard, but you needed that cordon sanitaire, you know - otherwise the working, the planning, the orientation all go to pot. Keep in touch, hugs to you x
My soul is bruised and battered and my heart hurts every time I think of her in a place that I know all to well she hates and is herself reeling pissed off at me and the world.
My husband has made himself believe that I deliberatley moved her in and somehow waved a wand to make every place not help her or keep her. Even though he has heard it from them himself, it is not his truth. I've been so depressed that I can't find any way out of my own black hole and I did get out once only to be kicked right back down into a bog of despair that now I have to endure alone.
He is positive they since the social worker is dealing with it and they have a lot more records on my mom that there's no doubt the place will take her and keep her. Initially he said we just needed to get a bigger place and get me a job and be stable enough to have her with us. That has since been revoked and he now just wants to be happy and not have to deal with my emotional outbursts. He says I need to snap out of my depression and stop neglecting my family. I have changed to the point he doesn't like me and he thinks somehow that this happening wouldn't change anything. The feeling of regret for not being strong enough to help my mom, the guilt I have for not paying attention in the beginning when I could have done something before all this started is overwhelming. And the thought of losing my husband over this is so unbievably confusing that I cannot even think straight.
At one point I think that if he can't hang on and support his wife through such a bad situation no matter what and continue to go so far as saying it's all my fault I don't have anyone to call or talk to and if I want to off myself then that's my fault to?! You just don't say thjngs like that to someone who U promised to love no matter what thru good and bad, especially when that person is so depressed that it's almost time for my padded room. Now he has decided he hates where we live, he hates his life and wants to move back 'home'. He is perplexed as to why I wouldn't want to move. For one, my mom is here now and it's because I brought her here, for two our kids are at an age where a move could really affect them, for three I never liked where we lived before. This whole situation is so screwed up I am unable to find a solution that doesn't require a lot of money really quick to buy a house w/a mther in law apt and acreage do my mom can recover if it's not to late. I am broken and without support.
Is it possible your husband was letting off steam? Give him a chance to calm down and think about what he said - could be there'll be words he'd rather take back. I really hope so.
By the way, *none* of your mother's ills are your fault. Thought I'd just put that on record in case it isn't completely obvious.
Big hug. Feel better. This too will pass.
On July 3, 2014 as I previously wrote my mom has been in the state hospitals Gero psych unit. I have visited her exactly once. As it is an hour and a half north of me. That was my choice. Do I regret it and feel guilty for not visiting her more often. Every second of every day I feel more guilt than words can express. Why would I not go more often, well, to sum it up, I gave up on trying to help her. I left it to those who are supposed to know how to help her. I stepped back from everything. Well, let me be honest, I fell straight into a black hole of depression so deep that I almost didn't see the light of day again.
Not sure if I already said this before but up until months ago I had no clue what depression actually was. Until I was fully emersed in it myself. And to be honest, nobody can say they do until they, themselves have actually felt and been thrown into the dark depths of depression.
You have no idea what being depressed feels like and cannot begin to imagine how utterly and completely the feeling of being alone can do to someone.
I can tell you this. The one thing that everyone in my life misunderstood about what it means to support someone through a time so confusing and so completely foreign to them is being there. The one simple act of just knowing that someone is there to listen on the other end of a phone your afraid to pickup is the one thing that I didn't have from any of my long time friends or my family, save one friend that has been my friend since 3rd grade and surprisingly my dad who in doing his best to keep in touch on a very regular basis, is something he doesn't do and for him to hear in my voice how badly I needed him is monumental. I will finish this in a bit, my son has requested I show how I don't throw like a girl. ;-)