Linda661 Posted July 3, 2006 Share Posted July 3, 2006 What do I do as mom's ONLY support when mom's confusion is to the point that things just aren't rational anymore, but mom now insists that she is coming home no matter what (says she's not sick and I can do this) -- without posting all the grueling details, the bottom line is that it is not safe for her or me or anyone else for that to happen. Not the way this is progressing -- and it's part of the medical records in her history that she is required to be in the nursing facility. It's also part of the record that she is in denial and can be difficult to get along with....and they tell me it's gonna' get worse. It's not helping that the nursing home social worker has fueled her in his efforts to "empower" her lately! She adamantly denies that there is anything wrong with her and will not listen to me at all -- our last 5 visits together have been so horrible that I now don't even want to go see her (includes coming after me in a fits down the hall when I do what the social worker said when I can't take it anymore and all the aides want to do is let me know my mom is calling for me and to bring me back to her in that moment). I'm also afraid to take her off-site anywhere at this point because I don't know if I can get her back if she pulls something in public, yet she pushes for that and won't hear at all of what all of this is doing to me (there's something wrong with me, she says; oh, come on, I'm a big girl.....on and on it goes, so now I'm her enemy that she wants to call the police on and disown me and on and on it goes). She wants me to bring her vast sums of money to the nursing home so she can go shopping in "the village" (whatever that is); I did put a small amount at the nursing home in their safe which mom could have access to and the next day, she calls me because she forgot that's what we agreed to do (plus she forgot she's had it on her person for months now, but we at least agreed to put it in a safe place so noone can steal it from her). I have no idea what she can do with it, but I'm trying my best to do what I can within reason given the situation. Her mother must have poisoned me against her (I never met her mother and her mom has been gone for many, many years).....And what I'm saying here is NOTHING compared to the actual depth of trouble the situation is. Hospice wants me to take time off, yet I get innundated with calls at home from mom that go nowhere -- mom is not about to give me that breathing room --- I don't get mental time off from this now. I may not be there physically, but having to screen calls at home at times isn't exactly peaceful recoup time and it's very interruptive when you have calls out to deal with mom's other business matters -- I'm a prisoner whether she's home or not (that's what it feels like). Got a call on Friday from the hospice social worker. The nursing home social worker had mom back in his office that day and mom is adamant that she's gonna' hire some caregiver to bring her home -- the nursing home social worker doesn't know what to do with this other than figure she can afford it (oh lord what a thing to say when he doesn't even know her personal circumstances), so he called hospice -- hospice says if she goes off-site, there is no guarantee that they could get her back (yikes!!!). Anyway, hospice social worker and I are going in together on Wednesday -- I now want no unsupervised visits with my mom because it's horrible (it has taken me 4 days just to decompress somewhat from the last visit! needless to say, nothing else is getting done while I'm in a collapse like that). Mom called me yesterday and I told her I was bringing the social worker with me for our visit -- to me, if you really want to address this and we are having problems dealing with it personally, you get intermediary help....she said "oh, that's trouble" -- she doesn't want to work this out! Yet, two visits ago, she said the nursing home social worker wanted to have a meeting with the two of us on this vacation issue (wasn't true)......which way is it????? She doesn't want me to have help through this -- she just wants things her way no matter what and she wants to keep what goes on between us private. I just don't know where I stand in this: where's the line between what the patient wants and what's actually do-able? -- I'm all for doing everything possible, but what do I do when what she wants just isn't possible? We are BOTH in this journey, not just her. There's more to this than bathing, feeding, etc. that makes it unsafe for her (and me) to come home....plus mom's playing everyone differently now (but we've compared notes and we know this is going on...a lot of fabrication going on)....someone new (caregivers are unskilled) won't have that history and I'll just be left with more horrendous mess. I've researched that scenario too (happen to know folks who have been through it too) and it's horrible what can happen with these independent caregivers in situations like this. I'm over the edge of capacity to cope with this one. If this gets forced on me to live with, I'll break and I know it -- I have no idea how to advocate this one. Am I looking at having to go to court for legal help if I have to or will the professionals already on board be able to support me adequately without putting me in such circumstances so I can support mom as I have to and am required to? There is sooooooo much more I have to do for mom and what's left to do for my dad's estate other than this being home issue and dealing with her dx. What am I gonna' do if she gets mad at hospice and wants them cancelled (they've been ordered by the doc. and was what she agreed to before this all hit)? Managing this is bordering on absurd if my input doesn't matter -- I just don't know where I stand in this no-win situation. What a mess. Linda Link to comment Share on other sites More sharing options...
Don Wood Posted July 3, 2006 Share Posted July 3, 2006 Linda, your problem is overwhelming. I hope it helped to vent it here. I don't have any experience with this, so I can't even advise you. You do have to take care of yourself first, and don't forget that. You may have some tough decisions ahead. Do you have power of attorney for your mom? If not, you may want to get that. Don Link to comment Share on other sites More sharing options...
EastCoastLadi Posted July 3, 2006 Share Posted July 3, 2006 Linda, This is definitely an overwhelming situtation. From a legal perspective it sounds like your mom is incapable of making the right decisions for herself, you could go the way of declaring her incompetent, but it is quite an ordeal, my mom did it w/ my grandmother. I also agree w/ Don.. are you her POA? I was my dads' and oversaw his finances. It sounds like it's coming to the time where you have to step back and admit that you can't control everything that your mother is going thru. I'd also like to know is your mom on any medications that can help her w/ her agitation, perhaps the best thing she needs at this point is to be sediated, I know you may not like hearing these things, but you can't burn yourself out. Definitely talk w/ the social workers. I think that maybe you taking on caring for you mom right now would be an incredible task for you to do. It is ok to say NO, you're not a bad daughter. Please keep us up to date. Grace Link to comment Share on other sites More sharing options...
mamasbabygirl Posted July 3, 2006 Share Posted July 3, 2006 LInda, Why does she want to come home? I know at my mom's nursing home, there were people who yelled in pain all the time and when I asked the aides, they repied "They have dementia". Are her needs being met? Link to comment Share on other sites More sharing options...
ma's kid Posted July 3, 2006 Share Posted July 3, 2006 Oh, Linda...so sorry for all you are going through. I don't have any experience either with this kind of situation but Don had some good advice about the power of attorney... Please take care of YOU. Praying things work out for you all. Have you spoken with her doc? Grace had some really good suggestions and I agree with her in that you are NOT a bad daughter!!!!!!!!!!! Hugs, Linda Libby Link to comment Share on other sites More sharing options...
mamasbabygirl Posted July 3, 2006 Share Posted July 3, 2006 I think Linda has all of this legal authority already. I just think that if your mom's needs are being met and you are absolutely certain of that, then all you can do is chalk this up to the disease getting to her. Let go and let God. Prayers dear... Link to comment Share on other sites More sharing options...
Linda661 Posted July 3, 2006 Author Share Posted July 3, 2006 Mom's needs are being met, Lori -- remember, hospice just got on board about 2 weeks ago and this situation has been escalating in the meantime, including as recently as just last Friday....it's an everybody getting up to speed and on the same page sort of thing. Mom's not in physical pain, Lori. It's her struggle with the irrationality from where she's at in her particular disease progression and life moment. She's already on a couple of different anti-anxiety/anti-depression meds, but it's probably not going to be enough. (I hate this......yeah, she's irrational, but all I can imagine is having to add more drugs to calm her down for something that to me is legit despair somewhere in that mix ....I just hate this). Wanting to come home isn't from maltreatment anywhere: it's emotional anguish from living in denial about being sick and not wanting to know just how much care she needs now and how quickly she's progressing and it's catching up to her. She can't recognize the "dementia" in her. What she thinks is fact is obviously fact to her, no matter how untrue it really is (like her mom and other similar matters) and she doesn't want to hear it differently. Yes, I am mom's POA. I just got off the phone with the hospice social worker to ask him the direct question of just where I stand in this ..... if mom should become hostile, want to fire hospice, insist on coming home, etc. etc. whose decision stands, mine or hers? I just can't calm down enough until I know this for certain. He doesn't think I have anything to worry about (he thinks there's enough medical evidence and I was the one who signed all the papers to hire hospice upon last doc. orders and what I understood to be mom's agreement/wishes when I last saw her "rational"), but he will bring it up at their staff meeting on Wed. am with their medical director (that helps); plus I am to meet with him on Wed. at noon, so I'll know definitely then (I hope). Thinking I'm OK isn't enough....I need to know that for certain. I tried researching this issue over the weekend and just couldn't find anything to "sink my teeth into." And please no one bombard me with more research right now -- I'm just plain exhausted right now to keep this worry up and it burns major mental energy to keep thinking about this (very hard for me not to think about it at the moment).....gonna' get a massage today at home and just try again to think about something else as much as possible until Wed. so I calm down and make sure my blood pressure meds hold their duty. And I've talked, talked, talked about this all weekend to other friends of mine -- does help somewhat to de-stress on this for some period of time (just doesn't work for near long enough right now). Fortunately, Don, I had POA long before this happened. Right now legally, I don't think an attorney would let her sign anything that would hold water (at least I think that's what I understood from our attorney....in tears, I already asked him last week if mom could legally change her documents in her present condition and he said no because she is too open for predatory actions by others -- seems a terminal doctor decision mattered in that one). I'm all for admitting I can't control this, never thought I could... What I am going to take charge and control, however, is what happens to me -- I have to to survive this. I've been advocating and supporting all this time, adapting/adapting/adapting to mom to my detriment at a lot of times, but not over the line sort of (i.e. potential life-threatening) detriment to me. But now I can't adapt anymore to the irrationality in this ......it's where the world believes I stand in this -- that's the scary part....everything as we know is geared to patient first as it should be in treatment decisions, etc. But if I don't matter at all in this the way it is right now, I just don't know what to do. It's no win and my mind just aches for mom -- mom's had betrayal in her life and good reasons not to trust people in her past.....here comes the final betrayal from her only family she's got left?????? Family is supposed to be safe haven and security . I hope no one ever has to go through this because I surely can't explain how the disease is doing it (last doc. said it's from it)...I had the CT scans done (whether those couple of small nodules in the head are causing it, docs. said no; plus mom was too weak and in some complications to pursue treatment -- I followed that to no end already by numerous hours of study here and elsewhere/with our docs. to try to get mom out of this mess if possible); electrolytes are fine; some have speculated that she's just not getting enough O2 to the brain from her impaired lung function, continuous O2 and great O2 sats, or not. Linda Link to comment Share on other sites More sharing options...
Suzie Q Posted July 3, 2006 Share Posted July 3, 2006 I agree with the meds issue. She definitely needs something for her agitation. Can you get a plan of care that requires the nursing home social worker NOT be working on her case? She should have adequate social work services through Hospice. No sense doubling up on services (not to mention the additional charges!). Go check in to a local hotel for a few days. You can have the ability to do all of your correspondence wothout interruption. Take a bath...get your nails done...get a massage. Whatever it takes to rejuvenate! You can leave an emergency contact number with a friend and they could decinde if you need to be disturbed. I'm so sorry this is being loaded on to your shoulders. Please do look after yourself. Be firm in getting a firm plan in place with the home. You KNOW it's not possible for her to be released from there, and let the Hospice social worker intervene with your mom to get her to understand that it's just not going to happen. Hugs, Karen Link to comment Share on other sites More sharing options...
Linda661 Posted July 3, 2006 Author Share Posted July 3, 2006 The nursing home social worker did the right thing -- it was mom who went to his office twice now (mom pursued him). He called the hospice social worker....(was just his comments that I found out about that didn't help my worry factor). Mom doesn't currently really remember the hospice social worker -- I'm not quite sure she fully recognizes at the moment that she's actually on hospice either.... We're gonna' get a plan, it's just happening faster than I can get things like this organized with a new set of staff to figure out what to do with. Linda Link to comment Share on other sites More sharing options...
Treebywater Posted July 3, 2006 Share Posted July 3, 2006 Linda, I just ache for you. There is nothing that I can say.... I know... I'm just so sorry. Having your Mom on hospice, knowing the disease is progressing is difficult enough.... With all of her irrationality and all that is going on... I can't even imagine how difficult it must be for you both. Just wish I could come hug you and help somehow. Know that you and your Mom will be firmly in my prayers. You are right to advocate for yourself. You have to. And doing so IS caring for your Mom. If you are incapacitated from the stress of all of this, your Mom is up a creek. So feel no guilt for thinking of yourself here. What you do for yourself now, is as much about caring for your Mom, as it is about caring for yourself. Here if you need to vent. Anytime. love, Val Link to comment Share on other sites More sharing options...
RandyW Posted July 3, 2006 Share Posted July 3, 2006 If ya need me pm me Sending Prayers and Big fuzzy towels out of the dryer for comfort they are the best you know!! Link to comment Share on other sites More sharing options...
cindy0519 Posted July 3, 2006 Share Posted July 3, 2006 Linda, Sending you thoughts of strength and praying that you and mom can both somehow find some much needed peace. I would also suggest talking to hopsice about med's for the aggitation. Dad had a bad day or so with this and they suggested that he might need something to help but it ws never necessary. Maybe they would help. Dad really wanted to come home to (though I think in his heart he knew he never would) - not sure this would work with your mom due to the confussion -- but something that really helped Dad was talking about coming home, the nurse sat with us (he/I) one day and we talked about him coming home, what would be required, what potential obsticles there would be, how he would feel/react to them, adn how we (SM & I) would be able to care for him. After all of this the hospice nurse simple explained that nobody would "keep" him there-- the alone could choose and suggested that we sit down and talk/plan his coming home again when SM was there and we all had a bit more time to think about it and get things organized. This "talk" seemed to really calm Dad and set his mind at ease, he never again mentioned coming home and spent his last two days at the hospice house quite contently before he passed. Oh Linda, I can only image how very, very difficult this must be!! As someone else pointed out - taking time for you does not make you a bad daughter! Please make sure to take the necessary time to remain sane and healthy...and vent away anytime!! Thinking of you and wishing you peace! Cindy Link to comment Share on other sites More sharing options...
MsC1210 Posted July 4, 2006 Share Posted July 4, 2006 Linda, Just adding my prayers to the mix here. You have so much great advice here now that nothing I can add would be much different, but I wanted to let you know I am thinking about you and mom and keep you both in my prayers and positive thoughts, Hugs Chris Link to comment Share on other sites More sharing options...
Don M Posted July 4, 2006 Share Posted July 4, 2006 Linda, what a tough deal. You have my prayers. I hope the hospice can step in and be assertive and can track evrything well. You really need to get away from the situation for a few days. Don M Link to comment Share on other sites More sharing options...
Maryanne Posted July 4, 2006 Share Posted July 4, 2006 So sorry Linda for all you are going through.You are doing this by yourself and it has to be so hard to carry this load alone. I wish you had someone to help you. You do need a time out for you. Please do something that will take your mind off of the present situation. A couple days of relaxation will not make a difference in your moms case but certainly help you to rejuvenate so you can handle what is being dealt to you. If your mom was in her right mind that is what she would want you to do. Just want you to know that I am thinking of you and sending prayers to your mom and you. You can vent all you want on here. We hear you and we fully support you. Maryanne Link to comment Share on other sites More sharing options...
Linda661 Posted July 4, 2006 Author Share Posted July 4, 2006 As I told a couple of people in private, I thought long and hard about even posting/venting this in public -- started to and didn't several times, before I actually hit the submit button. Among everything else, I am very, very concerned about patient reaction to this -- not a real comfortable or uplifting situation to read about. Though I am trying to regroup now (things are calmer today after that massage yesterday....another one coming soon in the days ahead), I still need/want to advocate somehow the issue of mom's lifestyle change: how in the world I am going to put in place things to keep her stimulated with this situation? She may have the greatest care in the world (she does), but it's going to be boring as all get out no matter how necessary it is for her to be where she is -- she may be confused and sleeping a lot, but she's still a person with quality of life needs. There are activities available to her there and the ability to take meals in really nice group dining areas, but so far she resists them and doesn't want to participate or socialize/meet new people. How many times can you cruise the halls in your wheelchair or sit in the hallway? That hurts too and I'm wanting to do something about that, I just don't know what yet when off-site stuff isn't really feasible (who knows? maybe it will be in the future). Hospice is currently sending in a volunteer to visit with her and try to engage her in activities like card playing 1-2 times per week; Mom has very few friends of her own to visit and they are not able to visit much with the hectic pace of their own lives and no other family, except me. Mom never was interested in much except her horses (which she hadn't been able to take care of for quite awhile even before her dx) -- no other hobbies. This issue is going to be hard too and hopefully Hospice and I can come up with something that might help there.....eventually? Really up to mom and whether she can or will adapt to this. Just plain hard, no matter how I look at it. Linda Link to comment Share on other sites More sharing options...
stand4hope Posted July 4, 2006 Share Posted July 4, 2006 Dear Linda, I get it. I didn't live it like you are having to, but my MIL did with my FIL. It was awful, just awful. He was competent but crazy at the same time when he became ill. I can't even begin to tell you how horribly verbally abusive he was to her, and that was after 50 years of marriage. Horrible isn't even a strong enough word to describe the hell my MIL went through. My niece also went through this with her grandmother on her dad's side. She was the only family member left, and the grandmother was sweet as an angel one minute and meaner than a snake the next and did CRAZY things, too. I'll have more to say about this in a minute. Her grandmother is deep in dementia now and in a nursing home. I want you to know this: You will NOT remember your mother this way. My MIL (who has also since died) didn't remember him like this after his death and neither did his brother or sister. Oh, sure, they remembered it, but when they thought about or talked about him, it was mostly about the good things from when they were kids and lived together as a family. At the time, I think they all nearly hated him, though. I came real close to that hate word myself. My niece would get so mad at her grandma when she would be mean to her that she would walk away for days on end. My niece is one of those ones that puts her foot down and says you won't pull that crap on me, or I'm out of here, and if she pulled that crap, she was out of there! Of course, she would return later because she loved her and would just keep trying. And this crazy woman was STILL driving. My niece went to the license branch when her grandma said she was going to get her expiring license renewed. My niece went to the license branch and told them they had to give her a driver's test and not give her a license because she was incompetent and an accident waiting to happen. They said it was illegal for them to do that and if she passed the eye test her license would be renewed. The problems she had became insurmountable - and she had a POA, too. She had problems with the bank because her grandma was doing crazy things with her money, and even though she had POA, the grandma told the bank that her niece was not allowed to pay her bills, write checks or access her bank accounts. My niece had been paying her bills for her for several years. The bank had to honor the grandma's requests, so the grandma's lights got shut off, etc., etc. My suggestion on how to get control is that you find out from your attorney what you need to do in your state to get guardianship over your mother (both person and estate) if that's the way it works where you are. The POA only works for you to do things for her and to act in her behalf as long as she consents. She has the power at any time to revoke that POA. If she is competent enough to find an advocate or get an attorney in that nursing home, even in her state of dementia, she can do whatever she wants - unless someone has guardianship over her person and her estate. At least that's the way it is in my state. Here, you can get guardianship over the person or the estate, or both - depends on the situation. The hoops aren't really that difficult to go through, it's not that expensive and you might even be able to be reimbursed from her account for attorney fees, etc. I think here you have to have a doctor's written statement as to her dementia, and the court appoints an attorney to represent the patient. Linda, you may reach a point where you won't visit very much at all, even with supervised visitation. It just may be too difficult for you, and she could even reach a point where she is thrown into a rage when you just show up. You aren't the first person this has happened to and it's always heartbreaking and mentally and physically exhausting. Just promise me that you will know in your heart that you have done the best you can, all you can, and that later in life you will NOT remember her like this. All my love and great big hugs, Peggy Link to comment Share on other sites More sharing options...
Suzie Q Posted July 4, 2006 Share Posted July 4, 2006 Any chance of a day trip to see the horses? Link to comment Share on other sites More sharing options...
Linda661 Posted July 4, 2006 Author Share Posted July 4, 2006 My legal documents already also name me as guardian -- I have two durable POAs: one general for household matters (personal finances, taxes, etc. etc.) and one durable power of attorney for healthcare decisions and nomination of guardian. Now how exactly that is used and viewed in the world, I don't know yet. I am also the named executor of mom's estate (and dad's now). Now if I can only review the draft of my own documents (since I don't have anyone around to advocate for me right now and no valid will), I'll be OK.....surely can't go over the edge NOW. Day tripping anywhere right now is downright not wise until more professional assessment is completed. One thing about me though: I take all this seriously and have been reviewing often mom's healthcare directive and instructions for what to do in all those documents in this kind of situation -- I'm still following mom's documented wishes, even if she can't do that rationally right now. Fortunately, I know how she felt about this home issue when we had to go through this with my dad not that long ago.....she was adamant he could not be home for all the same reasons I am now. We had him home for a bit and it was an impossible hell, even with home help. Plus, she has been voluntarily in that nursing home all this time for the very same reasons....she just thought she was gonna' get well enough from treatment to be able to come home. We both were scarred from the dad experience when the docs. didn't expect the severity and fast pace of what happened to my dad and we were left with a royal mess that just made it impossible to do much of anything, including simply get sleep at night or get away from the situation among many other home issues (including cats just destroying everything with bodily functions from all the strangers coming and going -- I know animals shouldn't matter, but those cats are her dears and they have to be kept inside....another story and there's so, so much more to things, including general house layout for the needs). A pat on the head saying it's fine to be home just doesn't work when you've learned to know better and to err on the side of safety and cautiousness when faced with unknowns that can just devastate in a hurry. At least I have that to go on -- my conscious is clear because of all of what mom has voiced in the not too distant past. And, I don't hold a grudge on her -- it's the damn disease, not her -- I forgive her in my mind every time I have to leave after horrible encounters. It's what the world does by default and assumption in this situation that I worry about. I absolutely cannot allow myself to go under in this -- I would have no choice but to walk away permanently if my back gets put against an impossible to deal with wall and my being were in danger of just plain going under. Linda Link to comment Share on other sites More sharing options...
mamasbabygirl Posted July 5, 2006 Share Posted July 5, 2006 I hope that mom comes around...sorry you are struggling right now : ( Link to comment Share on other sites More sharing options...
TamHol Posted July 5, 2006 Share Posted July 5, 2006 Hi Linda, I'm very sorry to hear things are getting so hard for you. As the only person to care for your Mom I can sympathise with your efforts and frustration. Although my father isn't as far advanced as your Mom, he is Manic Depressive and with that comes hilusinations, confusion and parinoia. It's horible to see them that way, but keeping the arms length away is definately a way to cope with the ringing phone and comments. I can't count the amount of times my Dad did alot of the things you discribe....that's been over a span of 20 years as Manic alone. My 83yr old neighbour who was diagnosed in Feb/06 with lung cancer, and 5 weeks later told he's terminal. Tried to shove his 60+yr old wife in the closet and lock her in there this past weekend. I don't know why RoseMary didn't yell knowing our dogs would hear her and they'd wake us? I think she thought she could handle it, or it was her job to try to handle it. She had to admit him to the hospital, something he, during a 5 min dose of lucsidness, agreed with. He wept when he found out he didn't know her and that he hurt her at the house the night before..... The point is the safety and concern of the ill person and the people surrounding them....the hospital deals with this everyday. Get stern with your papers in hand, even if you have to dictate to that social worker what is appropriate subjects to disguss with your mother. She can lie or give your Mom some technical garble to make her feel "in the loop", but she must chose that wisely as well. Take your papers to a lawyer, it's money well wasted if you can find your legal standing with the hospitals use of control with her. Funny how some care centers do too much for one, and not enough for another. She won't know how much you've done or endured for her, or what you've been willing to do for her and her well being Linda. But everything you do is enough, and you too may have your 5 min's where she knows and expresses her appreciation of all your help and effort. I hope things work out for you .... and your Mom. Tammy Link to comment Share on other sites More sharing options...
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