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I agree with all of you regarding the psych facility. They have a special floor at the hospital for the psych patients and I'm thinking that may be the next move. Since I am no longer going to be a part of the decision making process - I'll have to stand on the sidelines until she comes around - and then I'll explain again why I wasn't there to visit and why I didn't call - she probably won't believe me - but I'm hoping I'll have a chance to give her a hug and say goodbye (again)...maybe knowing what I do now - that each time, could be the last time...so very sad to watch her decline this way. I'll know more on Monday when the social workers are back in the offices to see whether or not I will even be invited to the meeting for discussion about where to place her.

And, no she does not have 5K a month for any kind of living situation. She has around 2K and that's it. Unfortunately, too much for Medicaid, but not enough for any where that isn't a 'shared' living situation. And, yes, she's had this paranoia for years - she divorced my step-father because she firmly believe that he was trying to kill her - and had placed 'bugs' in the electrical outlets to spy on her. I listened to all of that talk for a long time and she finally left him - I said maybe that's for the best - your safety is your priority, however, knowing him, I highly doubted the validity of the stories I was hearing - he thought she was crazy when she left - and called me to discuss. I told him at the time she believed he was trying to hurt her and it maybe was for the best they separate. He was hurt and stunned that she went that far ...it's a long and sordid story but it does say something to her mental status - I think the instability has been a recurring theme in her life for a very long time.

I'm grieving - I feel like I've already lost my mother - and in a way I have. I'm very sad and am glad of you ladies out there listening. Thank you for your supportive comments...and yes, I'm in the front seat now of Mr. Toad's Wild Ride and I'm feeling carsick. Hope it doesn't last too long :(
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Sue, I can't imagine what you're going through. It's just too, too sad and distressing. Makes the problems most of us face seem terribly petty.

In terms of "making too much for Medicaid", if you are ever in a position to offer advice to POA, there is an instrument called a Miller Trust which can be set up by an eldercare attorney. The excess monies each month go into a shared income trust which reverts to Medicaid upon death. It gets mom under the income limit and she qualifies. So, something to think about.

It sounds as though you've been supporting your mom in her decisions for a long time; it must be devastating to realize that this may have been schizophrenia or another mental illness for a long time.

You might want to consider some supportive talk therapy while going through this terribly rough patch of yours and mom's relationship.

Hopefully, she'll get stabilized on meds and recognize you for the absolutely fabulous daughter that you are and always have been.
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BarbBrooklyn, thank you for your kind words. I wake up in the middle of the night - 1:30 and think 'maybe my mom has died'...OMG will they even be able to call me and tell me??? I worry half the night if they're doing everything they can for her. Why did her mental status deteriorate so suddenly? Does she have another UTI? I know that makes her go off the deep end. Are they even evaluating her for that? She peed only once on Friday - they started an IV late Friday to get more fluids into her - I know she's prone to UTI's and with so little liquids going in - I encouraged her to drink the entire time I was there and she never once had to go to the bathroom - my mother is a frequent 'gotta go pee' gal. So this was unusual for her. But now I'm cut off - so this no contact thing - I'm not even sure the nurse would take my call??? Should I call anyway and express my opinion? I'm worrying myself sick over this situation.

I'm sure they'll do the very best they can for her - but if you're familiar with hospitals and I am - everyone should have an advocate when they're an in-patient. Most often it's a close relative, but in this case there's no one else. I'd like to know what caused her mental state to go down so quickly yesterday - what a change from her status on Friday - she was loving and seemed genuinely interested in getting out and into a situation where we would both be happy - in a home with other ladies so she can crochet (and she told the nurse, somewhere with nice people so she can bake cookies)...at any rate it was an unexpected decline in her mental status to the point that she thought I was trying to poison her. And apparently today nothing has changed. I'm worried sick about her...

I will call tomorrow and see if there is some counseling available for me to talk this out with a professional - I recognize that I'm coping with a great deal of stress right now - my inability to focus on my own priorities right now is a clear signal to me that I'm overwhelmed trying to process my grief - I don't know how else to describe it - it feels like I'm grieving for my mom who hasn't passed yet. Does that make any sense at all?
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It's called anticipatory grief, Sue. I was so glad to find out that there was a name for it, because I thought I was going nuts a couple of years back.

The person you knew is gone. Imo, you HAVE to grieve for that loss, or you can't do the work of getting this new person care, because you're always looking for that "partner" person who, at least in my case, is the one who taught me how to read med labels, how to fight with an insurance company and how to be nice to medical secretaries. Does that make sense?
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On a practical note, the hospital can't give you information about your mom. But I'm sure they would be happy to GET info from you.
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Update: Mom took me off the 'no contact' list on Sunday - and called and talked to me for an hour - said we (you and me) will work this out. Interesting.

Today was the meeting with Social Workers, her doctor and the church elder who has her medical DPOA. They discussed levels of care for her discharge - NH, AL, or group homes. They did not feel she's medically in need of a nursing home; and probably could not afford assisted living - so the group home was described to her and to my amazement - my mother said that situation sounded great! Someone to do the cooking, cleaning and manage her medications - of course there was no mention that she'd be sharing a room with up to two other ladies.

I'm going to go on Wednesday (along with the church elder) to view two places nearby - one of which he already supports an elderly lady by taking her to the dentist, etc. - she's 90 and lives at a group home that focuses on 'memory care'. I think that might be a better fit for mom than one that does not - because her memory is gone.

She forgets everything from one moment to the next.

At the end of the discussion we stepped out in the hall and they explained to me that mom's mental issues were 1)Dementia and 2)Delirium. Her delirium is exacerbated by any medical issues and caused the behavior I've been seeing. Her dementia will continue to worsen with age and the delirium will come and go as her health changes - if she gets an infection, if her blood pressure isn't well managed, etc.etc. So anytime her health gets a little askew she's going to go nuts basically and will lash out at whomever is nearby.

The SW's, et al (there were 5 of them) seemed very supportive and have a great deal of experience/familiarity with our situation. They were very pleasant and when it was all said and done, unbelievably everyone was happy. Especially my mother!

It eases my mind a great deal to see her doing so well. She appeared to look better and feel better - was sitting in the chair - not in bed thankfully - than I've seen her in a while. She was quite childlike though and didn't remember a lot of things (like she told me yesterday this church elder wouldn't be coming, but I disagreed with her...and she didn't remember that we'd even talked about it; she gave me her credit card and she thought she'd lost it - had the nurses looking all over the room for it - I reminded her that she'd given it to me to take care of)...She's just really forgetful, but at least not making accusations, etc. She did however spend the first 10 minutes of my visit telling me what a b*tch the lady in the previous room (she was in a shared room with another patient originally - and the lady complained about how loud my mother was - so my mother was moved to a private room to get her away from that lady)...so she went on and on about what an awful person 'she' was..

That's a familiar story...my mother never likes anyone for long. My worry is that she's going to behave the same way at the adult foster home and she'll be begging to leave - oh boy :( How many times will we have to move her until we find the right fit? The SW's warned us today that 'could' happen...so be mindful of that...

At any rate, my husband is having surgery later this month so all of the moving furniture out of her place, dispensing with everything and getting her settled with clothing and personal items needs to be taken care of by then. Now I have about 3 weeks to get this straightened out...my son and others have offered to help - and I'm going to take all I can get to get mom into the best place. Hope it all works out.
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I have learned so much from being a member of this site. All of us have so many complicated issues when it comes to family dynamics. In my case, my mother was abusive with me and my father. My dad and I were exactly alike in every way and I would jump over the moon for him. I did give up my career to care for him after my mom passed away, and I had the most wonderful 11 years and 3 months with him. I must add that my father's mind was totally intact until the day he died. He did not have an abusive bone in his body. He helped me raise my four kids after my "X" left. I sacrificed a lot for him but it was worth it because of the job he did with my children. He was relentless with my boys and taught them to do so many things like painting, plumbing, ceramic tiles, gardening etc. He also taught them how to be a good husband and father by preaching to them that drinking, gambling, and womanizing was wrong and would bring them problems in their lives. Everyone's experiences with caring for their parents is so different and it sounds like we all need different kinds of advice. There doesn't seem to be ONE fit for all. Even though I became impoverished and my sisters have made it clear that it was my choice to care for them and do not want to give up a penny for me, I still feel so much richer than they will ever be. They were waiting for the cash after my father died. The time I spent with my parents before they passed was so special to me. I got to know them when they felt helpless and vulnerable. I got the chance to be strong for them as they were for me when I was a girl. Passing away is the hardest time in all of our lives. I am thankful that I was there for both of them when they took their last breath. All of us are faced with extremely hard decisions to make when our parents age. No one can tell us how to handle our own personal situation. To answer your question about leaving your job. Follow your heart. Make a decision that suits your life and ensures that your parent(s) will have the best care possible. It might be necessary to seek advice from a lawyer that deals with elder care issues especially if you have siblings. That is the one thing that I regret not doing. Even though you grow up in the same house by the same parents, money seems to be the only important issue at the end. I did not believe it would happen to our family but it did. Don't take the burden on yourself. After all it is a FAMILY decision.
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I feel your pain. My mom just moved into an independent living facility in our town and its a constant barrage of complaining, nastiness and blame (You made me move, blahblah) I also work FT with family commitments. With that being said, DON'T QUIT YOUR JOB. You love what you do and need it for your mental and financial health. Its hard. You want to do the right thing for them even though they make it REALLY HARD, but you can't do it at the expense of you, your family and your happiness.
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Totally agree. Look after yourself yoo.
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An update: Just as I'd expected, mom despises the AFC she's in. Hates the lady who runs the place and is suspicious of her - thinks she comes in to deliver her medications - but mom says 'why does she have to bring it in the room? She could leave it on the dining room table and I'll go there and pick it up. She's coming in to 'spy' on me. She wants to 'look around'. She's 'watching me' to make sure I don't say anything to her 'pet' - mom is certain that the lady who runs the place has 'favorites'. She doesn't like me! A thousand reasons why it's imperative that she must find her own apartment! She told me on the phone yesterday that she DOES NOT HAVE DEMENTIA - and that she's going to find another place to live! She just cannot stand it there - sharing a room with another lady (who farts, plays her TV and naps - with a game show running - and various other offences) However mom doesn't realize that she has her faults as well (including farting, burping, belching and her stuff is all over the place - she just can't seem to get organized! Everything is a mess - to quote her)...the other lady however is neat as a pin - keeps all her things put away, hung up and her bed made. Mom can't or won't make her bed and all her things are in a state of chaos. Whenever anyone tries to help her get organize she always declines ' I'm too tired to mess with that right now'. People go to try to help her review/organize her clothing - I don't feel like trying on clothes (that are too big) right now. And NO you cannot get rid of any of those clothes (that I've never worn)...and probably will not wear..She insisted on having two pair of old stretch pants taken to someone for alterations! Some of these clothes are so big and of so little value - they aren't worth altering. She actually let go of two pair, and is now insisting that the lady return them - and she'll 'take them in' herself....right...

So, nothing has changed...mom complains constantly. She hates the food, she hates the people, she hates the AFC. She cannot afford to move to a nursing home or assisted living facility - I've searched and there is nothing in her price range. She's even asked me if I'd pay the difference if she could get into one of those 'nicer places'. However, I don't have that kind of money - to pay somewhere around $4000 a month for her to live in another place.

The only other AFC's I've contacted are between $5000-6000 a month - and have waiting lists. She does not realize how lucky she was to have found this AFC that has a reasonable monthly rate that she can afford. From what I've seen the lady is kind but not overly hovering or meddling; she tells me that she prefers not to mess with residents things - I had to specifically ask her if she'd help my mom put away her clothes - mom just couldn't seem to get it done. I'd already put things away - put she'd take them out and leave them in a pile of chaos...

Oh well...here we are back at the drawing board. She's even mentioned moving into my house while I'm away - the water is turned off, the heat is down, the cable/internet are shut off - basically it's a house closed for winter - with stairs; but that's not in her ability to comprehend.

I've asked her, if she were to find a suitable apartment how is she going to afford to have someone come in to stay with her around the clock - doctors have already said she cannot live alone - does not have the mental capacity to make complex decisions - and that's when she launches into ' I do not have dementia' I'm perfectly capable of taking care of myself!

The doctor is going to have to discuss with her. I'm at a loss as to what to say to her - and refuse to argue with her about it. I've already told her she cannot safely live alone - she doesn't drive, she thinks church people are going to come over and take care of her (they will not). They visit a couple of times a week - but they are not offering round the clock care services.

She can't even take care of her possessions at the AFC - how in the world would she manage an apartment?
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Sue, your mother may or may not have dementia. But it doesn't matter: what she definitely does NOT have is good-enough mental health to maintain her grip on reality - I don't use the word paranoia lightly, but somebody must have said "paranoia" about her, surely? - or to make decisions that will safeguard her.

The AFC Manager sounds a gem, really experienced in her work? I should lean on her expertise and advice heavily, if I were you. And stop worrying about the possibility of your mother's moving into an apartment, and how it would work... There is not a snowflake's chance of that happening. It just isn't a scenario you have to consider.
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I did get a return call from her doctor today and he agreed wholeheartedly that she is not able to live alone in an apartment. I asked him if he would please discuss her mental status with her and be very clear about her living arrangements. I also told him that she feels that I am 'blocking her' from moving into her own apartment. When in fact I'm simply concerned about her safety and that of others in an apartment building - she denies leaving the stove on and/or any other dangerous behaviors like setting a fire - she never set a fire - but did leave the stove on - but she assures me that was only due to a bad reaction she'd had to medication that had been prescribed to her...

And so it goes...she's certain that her mind has restored itself to full functionality - however she cannot bring herself to ASK her caregiver to heat up her food or to give her a second portion of food (she always says the other ladies get bigger portions of chicken or whatever they're having - although it's not due to the fact that she doesn't eat very much at any meal; and she complains constantly about the food being no good)...but she wants a larger portion??? She also feels that the caregiver there does things to 'spite her' - such as mistakenly giving her two cranberry supplement tablets instead of one. It could very well be that the lady has made a mistake or two - she is on a great many medications each day - I'm not sure I'd get them all correct every time either! So I've asked the doctor to have the pharmacy send over blister paks of all of mom's meds - that should take care of that (he agreed to do that right away - easy)...

However he isn't sure what he's going to say to her about her mental status - he doesn't want to upset her -well I don't either - but she appreciates the truth and would rather hear the truth than some kind of beating around the bush.

I hope she will accept what he says as being for her own good and stops this pursuit of an independent living situation where she will be alone and in a dangerous situation - handling her medication, preparing meals and cleaning up after herself - all out of her realm of comfort.

I hear what she has to say on the phone every day - and she has trouble remember people's names, events, and other details. Often filling in the blanks with information that isn't really true - confabulation they called it at the hospital. Some truths but some not so truthful things. I've compared notes with the lady who visits with her regularly and some of the things she says are based in truth - just twisted around somewhat (or a lot) to suit the listener...Always trying to negotiate to get what she wants. I'm sure it's exhausting.
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I hope that the "doctor discussing her mental state with her" doesn't fall on deaf ears, but it may.
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It may be too late. Mom is having a severe paranoid-manic episode currently. She has called me and the friend who looks in on her multiple times today - she contacted Adult Protective Services recently (did not tell me she'd done that)...to report to them that the caretaker at the AFC has not been giving her the twice daily medications in the dose packs that they were sent in. I called the caretaker yesterday and spoke to her and asked her why she had been taking them out of the packs and she said she thought she was helping my mom because she thought it would be difficult for her to open the packs by herself. Mom is furious because for the past several months since she's been there the caretaker has been removing her meds (only her meds, not that of the other 4 ladies) from the dose packs and giving her meds to her in a paper cup - and a couple of times she made a mistake by either giving her two of a med or none of the med - mom questioned her both times about the error and it was corrected.

Now she's convinced that the caretaker is trying to poison her or make her sick. She is also concerned that by contacting APS (who arrived at the home today and spoke to the man up front - the caretakers partner) and told him why they were there before speaking to my mother - that the caretaker lady is going to be furious with her and will retaliate by 'taking her revenge out on her' - possibly harming her - she said, ' she may hit me in the head tonight' - I want you to know that this might happen so you can contact the authorities to investigate my death.

When I spoke to the caretaker yesterday she was very kind, answered my questions appropriately, did not sound angry or upset - and the very next day the meds were delivered as requested - all in the dose packs to mom. But she persists in this manic ' now what about all the months I've been here and she was giving me my meds in the paper cup????' What about that????

I asked her, mom, what can I do? What would you like for me to do?

I want out of here! I'm not safe here! I have to get away from the caretaker!!! I'm in fear of my life here!

The other lady was there today when APS arrived and my mom was so paranoid that the caretaker would overhear their conversation through bugging devices (?) that she insisted that the only place they could converse was in the bathroom (mom did not tell me this, the other lady who was there did)...

She told the lady who was there to take her groceries, and clean laundry that she may have to call 911 tonight if anything happens..

The lady who was there was able to briefly step outside with the APS lady and they asked her if mom suffers from dementia - yes, she said she does...and at this point her mind is really bad - she was unable to remember today what several of her meds (that she's been taking for years) are for. I told her that she gets meds in the evenings that do not come in the dose packs - she wanted to write them down - but couldn't remember how to spell them - she also couldn't remember what they were for - she's been taking these same meds for a very long time - but she said, to be on the safe side, I need to write this down and I need to know what it's for. She has a list of all her meds in her purse (I think)..or did...but can't absorb all the meds on that list or what's given when.

I don't know that it would do any good to contact her doctor at this point - he's scheduled to come back to see her around March 1. In the meantime, I fully expect that she will be calling EMS to go to the ER for an evaluation. Perhaps they can do another workup there - I have also wondered if this is a ploy on her part to find a way to get out of the AFC where she's living - she absolutely hates the place but so far we are unable to find anything else she can afford or that would be suitable. The doctors already said she's not sick enough for a nursing home and possibly not for assisted living since they're usually large places that require some level of independence. The last AL my mother was in she hated - didn't like the food, the people, the staff...nothing is every 'right' for mom. And even if it appears to be initially - she finds fault in every situation - with everyone.

She told me and the other lady who has been so kind to her - that we were both stupid for not being able to understand the issue of the meds being administered in a cup for all these months...

No idea what to do about this mess...
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