Exhausted and angry--venting

OnlyChild1970

Please forgive my ridiculously long post. It's a character flaw.

Background: My mom (91) was fully independent til last October. In hindsight, there were signs that she was deteriorating--she was suddenly unable to navigate the remote control and the phone, for example, and I made quite a few drives to her house to assist her with things like that. She wasn't always able to bring up the word she wanted. She was beginning to have frustrating episodes where she couldn't articulate what was in her mind, and she would get angry at me when I would try to draw out whatever she was trying to say.  But it was a workable situation until an afternoon in mid-October, when she called me and told me she had fallen in her den and needed to go to the ER. She'd broken her toe--thank heavens that was ALL she broke!--and the doctor gave her a walking shoe and told us it would heal in 6 weeks or so. Even with the broken foot, she was still able to live independently until mid-November, when she woke me with a phone call telling me she was short of breath. I took her to the hospital and she was admitted for 4 days, largely waiting for her COVID test, and I'm fairly sure she was in complete isolation for those 4 days. (The issue ended up being related to her COPD, not COVID.) When she came home it was immediately apparent that she was not able to be on her own--she was unable to get out of bed on her own, to say nothing of the broken toe. I arranged for 24-hour nursing care, for which she had provided many years ago via a long term care plan. She always said "if anything happens to me, I'll be able to stay at home instead of going to a nursing home." She was fine with the presence of the nurses and often thanked me for arranging the care, and the nurses for being there. 

She had a very sharp and sudden mental decline around Thanksgiving. She was agitated, repeated questions again and again, wouldn't eat, wouldn't sleep, didn't want to be alone in a room even for minutes. She stayed in bed except to get up to go to the bathroom. She talked incessantly about dying--she would start every conversation with "I think today is the last day. If something happens to me, know that I loved you..." Over and over. She was so obviously suffering that I took her to several doctors in an effort to find something that would help. Finally, after several referrals, she had an EEG which revealed changes in her brain waves consistent with dementia.  (That's per her neurologist.) On Christmas Eve, she was seen in the ER because she "didn't feel right"--she couldn't articulate further--and she told the personnel there that she lived "alone". The ER nurse told me she was not in any condition to live alone; I told her we had 24 hour nurses there, that she was NOT on her own at any time.

The neurologist prescribed antidepressants to deal with the anxiety and agitation. And lo and behold, once they took effect, Mom started improving. She wasn't as scared. She was more engaged with the world around her. She went from a terrified, frail woman to someone more like she'd been before......

...and then she started trying to kick the nurses out.

For about ten days now, every day like clockwork, at 4 PM, I get a phone call. (Mind you--I call her at least 5 times during my workday, to check on her and see how she's feeling. I answer the same questions--where am I, what am I doing, where is my house, what is my phone number, who do I live with, etc--at least 3x every call, and I am patient with her. And I try to make sure everything in her situation is acceptable to her. I have talked to the nurses about giving her some space, now that she's doing better; about giving her options, letting her choose what she wants to eat, things like that. I have told Mom this: The ONLY non-negotiable part of this situation is that the nurses HAVE to be there. Anything else--which nurses, how they treat you, what they let you do--ANY of that can be worked on and changed if there's something you don't like.)  And every day at 4:00--even if I talked to her at 3:30 and she was FINE--she wants the nurse to leave, wants to be by herself, wants "those people" out of her house. And for the next three hours, usually over several calls, we go over and over the situation: No, the nurse cannot leave. Yes, I told the nurses they can be there. No, you cannot live alone. Because the doctor SAID you can't, that's why. Because I am responsible for your safety, and I take that responsibility very seriously. You have a medical diagnosis of dementia and it is not safe for you to be in the house by yourself. No, the nurse cannot leave. No, the nurse is NOT eating your food--they bring their own food. No, the nurses do NOT sleep on their shift--they do your cooking, your cleaning, your laundry, etc. Yes, I told the nurse they can be there.  Over and over and over. We re-legislate her diagnosis, the nursing care situation, everything. Finally I have to explain to her: Mom, we have two options here. Either you can be in your own home, with your own comforts and your own things, with the nurses there, or the other option is, you can move into a nursing home. I know -I- don't want that, and I'm fairly sure YOU don't either. And eventually, usually with a very bad grace, she capitulates.


Today she said something really cutting to me--she literally asked me "So what's in it for YOU?"--and I snapped. "What's in it for ME? Are you SERIOUS? Headaches, stomachaches, sleepless nights, stress, no time to myself, anxiety attacks--do you want the rest of the list?" I mean, I went OFF. (Which I think I have maybe done ONCE in my 50 years--I was an easy kid, an easy teenager, and a secretive young adult.) And she seemed to recognize that she'd gone a little too far with that one. "Well, I'm angry at you!" she said. "Why are you angry at me?" I asked. "Because you told these people they can be in my house!"

I know, I know, I know this is sundowning. I've told her the same--"this is part of your disease, and I know it's not intentional." Four hours from now, when the next nurse is there and giving her ice cream, Mom won't remember this. But I will. I'll be the one with the stomachache. I'll be the one with the tension headache. I'll be the one who wakes up tomorrow morning dreading another day. I'll be the one who watches the clock and tries to figure out how I'm going to handle going through this again. I'll be the one who thinks about getting in the car, throwing my phone out the window, and disappearing forever. 

My mom and I, mostly due to her disapproval of my choices as an adult (some legitimate, some less so), had a rocky relationship for quite a few years (from my mid-20s til my early 40s). We worked it out. We had a pretty decent relationship for these past few years. I don't want to resent her for the last years of her life, especially for something that's not her fault. I can handle the repeated questions, answering the same things over and over, 20 and 30 times a day in some cases. But I just can't have this "I don't need the nurses" argument every day, especially not for hours at a time (and especially ESPECIALLY not at the end of my workday!) 

Any ideas on how to get Mom to accept the existence of the nurses would be appreciated, especially coming from the hardy souls who might still be reading this post. (Please note:I am new here, and new to the whole situation as well, so please excuse any faux-pas or unintentional microaggressions. I'm VERY open to learning.)

M1

Welcome to the forum. I'm going to throw something out for consideration: maybe your mom is lonely. I wonder if she might actually do well in a memory care unit with other folks to talk to and socialise with.

Another thing though I know it's hard: I would try to quit rehashing things with her. Just don't answer that 4 pm phone call if you have to, it's just agitating both of you.

Good luck, there are many wise folks here.

star26

I just have to say that the way you have handled everything and the care you've provided for your Mom is stellar. She is one lucky woman. Also very smart to get the long term care insurance. Since we seem to mostly be talking about obsessive complaints just during the sundowning period, I think it's okay to not accept her calls from 4pm on. You can call the caregivers in the evening to make sure she's okay, and of course they know to call you if there's any problems, but otherwise avoid her calls. If the caregivers at that time are skilled in handling her demands for them to leave, or any escalating agitation, I think you can feel fine about doing this. This is the same thing that would be recommended if she were in memory care and calling for you to "get me out of here". I had to do it when my Dad was in the hospital and calling all night for me to pick him up and I found that he didn't even remember the calls, from one call to the next, or the following day. It is totally unreasonable for you to have to take those calls every day, especially since you are already talking to her so often. If the sundowning worsens or becomes more than what the caregivers can reasonably handle, maybe her MD can suggest a gentle medication to calm her at that time.

Quilting brings calm

I’m going to agree with Star. You’ve got nurses there.  They are being paid to occupy and calm her down.  It’s not like she’s alone.  Those of us who have been thru a few sundowning nights understand exactly where you are. The nurses at the hospital sent me  home  late afternoons when mom was sundowning with urosepsis.  They knew exactly what to do. 

I’d also recommend that you cut your phone calls to her down gradually to one a day.  Don’t worry... as you know she will call you.  You will probably still end up talking to her several times a day 

Oh- and it’s normal to feel exhausted and frustrated and resentful. Never be afraid to vent here 

towhee

Oh, Onlychild, I know exactly what you are going thru. Although in my case I was going back home to my LO at 5pm and being greeted with "why are you late, this girl (companion/CNA) needs to be home fixing supper. And I do not need a babysitter!" It did not matter whether I was late or not of course. This went on for months and I did not always handle it well.

A few thoughts:

1) Your mother seems to have progressed in her disease. Like some of the other posters have said trying to reason logically with her is useless and just causes you (and her!) more stress. Repeating your reasons is just going to make things worse. You have to find something that makes sense in her universe. Part of the problem is that she feels a loss of control and anxiety. Some people have had success by saying that the CNA really needs a job, and letting the PWD feel in a position of "power". The most success I had was by saying that the CNA had a plumbing disaster and was really grateful for the extra time. This worked for three weeks and I was able to come back to it a few times.

2) I also tried resetting the clocks back half an hour, having the CNA shut the drapes, turn on lights, change the TV show to one she didn't watch at that time of day, anything that would hide the cues as to what time of day it was. I was a little desperate. Routine is your PWD's friend usually, but sometimes they get stuck in a bad rut and you have to break them out.

3) I also had the caregiver start a special activity sometimes, but what worked best was to have one of her friends call right before I came in and occupy her for a few minutes. Caregiver gone, me fixing supper, her train of thought derailed. Couldn't do that too often unfortunately.

4) I also agree with other posters that you are calling too often. Try to gradually, very gradually, stretch out the time between your calls until you are only calling twice a day. Try to have a short topic when you call like I saw the most beautiful bird, or I ran into your friend at the grocery store, and a reason she will accept without anxiety to cut the call short and hopefully remove the need for those anxious questions. 

5) If she is capable of it and when she is vaccinated it might indeed be good for her to have outings. I know my LO got worse when she was stuck in the house for weeks on end, even thought the caregivers were great. Some adult day cares are very good, and even just getting out for ice cream can be helpful.

6) If necessary, talk to your doctors about a very small dose of anti-anxiety medicine for the afternoons. 

7) Choices - Our LOs sometimes reach a stage where choices just make anxiety worse. Usually try to limit choices to two- red dress or blue, coke or tea, turkey or ham. The caregiver can usually judge whether choices are a problem.

My apologies if I seem to be preaching. This post brought back too many memories.

Cynbar

This is going to be difficult to hear, but the rules have changed. You are talking to her too much, trying to reason with her, trying to make her come to a rational understanding of her limitations. She can't do this anymore, her brain isn't working right. It's almost like you are talking in a different language now. The long, detailed explanations are only increasing her anxiety and agitation. Try keeping things simpler, even if small filblets are required. Tell her the nurses need to be there on doctor's order tonight, you'll talk to the doctor tomorrow. Avoid telling her she has dementia, avoid discussing home care vs nursing home, avoid trying to convince her she can't be alone. Most people with dementia do not acknowledge or understand their limitations. Change the subject, tell her you'll see her soon --- then let the nurses deal with her. Anyone working in home care should have experience with dementia and sundowning, or you have the wrong help in place. But please don't expect her to be rational here. Less is more, and the goal is to deflect and defer, not make her agree with your decisions. It's a big hurdle to get over, most of us have been there.

OnlyChild1970

Thank you all for the kind words and the welcome!

As an only child, and especially after my dad passed when I was 17, Mom and I have always been close, even when it was a very rocky closeness. People have told me how wonderful it is that I'm doing the things I am for her--without going into too much detail I'll say this: Every single thing I do, she MORE than deserves. She has gone above and beyond for me throughout my adult life--through some critically bad decisions (divorce, substance abuse, dumb relationships full of drama, financial stupidity galore) as well as some perfectly reasonable decisions she just ferociously disagreed with (my current marriage, buying a house in a neighborhood she didn't approve of)--through all of that, she was still there for me. And as I've told her--she spent her whole life caring for everyone else. Her siblings, her husband, me, her parents, me again, and again, and again....It's time someone takes care of HER. I wish I could get her to see the nurses as "assistance" rather than "intrusion". I hate that she's always trying to chase the nurses off, as they all love her and talked about what good company she was before her decline, and once she started improving again--it makes me sad that the unpleasant side of her personality (which, as I can acknowledge from earlier times, definitely exists!) seems to be resurfacing now.

While the notion of not answering her calls is tempting, I'm fairly certain it would bring on the end of the world. I exaggerate, of course, but not by much. She is accustomed to having me at her beck and call, which is fine when the conversations are reasonable, but when the whole point of the call is to argue about why she needs nursing care....What I'm saying is, that's gonna be a big mountain to climb, but I'm sure I'll get there.

As far as not trying to explain or reason: That worked PERFECTLY while she was going through the "anxiety" phase. Now that SHE believes she's "normal"--with, might I add, no recollection whatsoever of the last 4 months!--but now that she believes she's "normal" again, she is DEMANDING to be treated as such, and DEMANDING explanations as to why things can't be exactly the way she wants them. (Mom has, all her life, been accustomed to getting her way, and has many, MANY strategies to get there, none of which appear to have deserted her at this time.) It's like if you took an average independent (and extremely stubborn--as I've told her, I see where I get it!) adult and the only thing you did was to erase their memory going back ...maybe 10 or 20 years. So when she calls and demands to know WHY the nurse is there and WHY she has to be there and so on and so forth....Everything I've read about dementia totally reinforces the whole "don't reason or explain, and it's ok to fib, etc" but ....right now, that's a really hard guide to follow, most especially the fibs. But I think you all might be right, and it might be time to stop answering those calls.

I appreciate the guidance and the voices of experience. It's good to know I'm not alone.

mommyandme (m&m)

I would remove “nurse” from the conversation.  That points to a medical problem, her medical problem. When my respite help comes, I say “your friend Ashley is here.” ... “She’s going to hang out with you while I’m blah blah blah...” She’s our friend, not anything else to my mother.  Although Ashley is a CNA and completely capable and does so many wonderful things that help me (and my mother). 

Your mom is probably grieving her health, her life, her independence etc... She may not even know she’s grieving.  Grief takes a different approach and even without cognitive misfires, reasoning often doesn’t help.  Saying things like “I understand... I know it’s different/difficult... I wish things were different too... I’m  so sorry you feel sad/mad etc...I need you safe and warm... I love you...I’m going to be here for you...” is what works here.  Just validating her  feelings may help even though there may not be the changes she desires. 

One of the most profound things I was told by a caring Occupational Therapist is that mom and I are partners in her care.  I think the OT was hoping my mom would understand, not sure she did, but what it helped me understand was that mom needs to help me too.  It helps me if she takes her pills for instance.  Earlier on I was able to say to mom something to that effect.  She has some responsibilities here to help this run smoothly, if that makes sense.  

I’m probably not articulating all this as well as I hope, a definite character flaw.  

Sending thoughts of a peaceful day for you and your momma. 

Iris L.

OnlyChild1970 wrote:

but when the whole point of the call is to argue about why she needs nursing care....

  Now that SHE believes she's "normal"--with, might I add, no recollection whatsoever of the last 4 months!--but now that she believes she's "normal" again, she is DEMANDING to be treated as such, and DEMANDING explanations as to why things can't be exactly the way she wants them. 

Welcome.   Your mom is not arguing nor is she in denial.  She has anosognosia, which is a common characteristic of the dementia.  She TRULY believes she is fine.  PWDs with anosognosia will become upset if you try to convince them otherwise.  You are fighting a sign of disease.  Please read more about anosognosia.  

 Iris L.

Cynbar

Just because your mother is asking for answers doesn't mean she can process the truth, especially a detailed argument that tries to make her understand. This was a big hurdle for me to get over. My DH sundowns like crazy. He used to be very involved in several men's organizations, and will suddenly decide he has to leave for a meeting, right now. Occasionally I can change the subject but more often he won't let it go, demanding to know why he can't get in the car and go to that meeting. Yes, he is looking for answers, but it only made it worse when I tried to reason with him . He has always been an educated and discerning man who was very reasonable. Now, I try to find an answer that will satisfy him. I might tell him the meeting is tomorrow, or canceled because of COVID. Sometimes I get on the phone and call a friend but pretend it's a meeting attendee, confirming the change. I keep it as simple as I can. If I try the real truth ---- he has advanced dementia and certainly could not attend a meeting, much less drive there --- he gets angry and defensive and agitated . After a year on these boards, I've gotten pretty good at it, and I must say it has helped.

Azadi

My experience with my mom advancing to late stage of Alzheimer's was that during the day I had to give her anti anxiety medicine every 4 hours. So I gave one at 8AM, 12PM, 3:30 PM  (before the 4:00 pm sundown episodes) and one before sleep. According to her neurologist, the pill had to be always in her system. There was no guarantee that everyday will be a good day but at least the medication was in her system. If I waited until 4 PM to give her next pill, she would refuse to take the pill. At the end, while she was getting worse, I had to take her out at 3 PM to stop her agitation. As far as your mom, do the nurses give her anti anxiety medicine around 3 PM before the 4:00 pm phone call?

Rescue mom

A strong second to what Cynbar said, and maybe more bluntly. Your mom has dementia. Her brain no longer works right. You are still trying to rationally answer long, detailed questions. But, as said, just because the question is asked, does not mean she can understand real answers. Too much talking is often too confusing for the PWD, and obviously stressful to you. Yes, she deserves a lot, and you are doing so much. But what she needs now is different from what she needed before dementia.

ButterflyWings

OnlyChild - welcome! It was hard for me to fathom that DH was not in denial; he truly did not and does not comprehend that he is impaired in any way. So, I was the one that wasn't facing reality which was hard, but necessary for me to get my own comprehension straight. 

Ditto to what many above have said, especially Cynbar, RescueMom and Iris. Learning about anosognosia really helped. See link below. Also, we found that safe medications are a lifesaver for his anxiety, agitation, and exit seeking that starts at 3:30-4p and will not stop without an intervention. So, melatonin helps him slow down or sleep at naptime and nighttime. Seroquel is like gold for us. He started at 25 mg, now takes 25 mg on waking, 25 mg early afternoon, and 25mg at bedtime. Missing just one dose throws our entire day and night off. We used to be an 'all natural family'. Herbs, exercise, clean eating, etc. rather than prescriptions. Then, dementia came to town and changed everything. Now, whatever makes life more manageable is the right thing, even if it is meds. Or fiblets. Or noncomittal answers. Oh wow!, Really? Huh! Is that right? Hmm. You don't say. Tsk, tsk. My, my, my. Isn't that something?  Goodness gracious. I'm not sure, but I'll try to find out... (rinse and repeat as they say in this forum).

You are letting someone's brain disease make you crazy. Don't. Good luck - you sound like an amazing, caring, daughter!

6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

 

6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Deme...

If someone won’t believe they have cognitive problems, it might be anosognosia in dementia. Find out 6 ways to g...

OnlyChild1970

Thank you all again for the welcome--and a special thank you to those of you who had kind words about "being a good daughter", because that seems to be my own personal issue right now. Mom has decided that I'm "against" her. Which I recognize is just dementia being horrible, but....

As most of you know, I'm sure, the mother-daughter dynamic is often fraught at its best. Nobody can push your buttons like your mom. And ...well, let's just say this "you have to do exactly what I say or you're the enemy" thing from Mom is NOT a new development in her personality. We have a long history of butting heads, generally when I wanted to be or do (or date!) something with which she disagreed. But we had gotten past those days--starting about 25 years ago when we both made some MUCH-needed changes to our lives--and our relationship, up til the point when all this started, had vastly improved. And I know the circumstances are different now, but hearing how I'm "not on her side" and "working against her" and all the rest.....it brings stuff back. 

Add to that her little snide comments about "why aren't YOU here instead of THEM?" (meaning the nurses) ...things of that nature (and yes, there are good reasons I don't live with Mom, and even if I did move back in I don't think I'd be able to keep up with her needs and make sure she's safe--I can work from home, wherever "home" is, but I have to WORK--which means I can't watch to make sure Mom's using her walker, or not doing something unsafe, etc.)....but at any rate, the current theme is "GUILT GUILT GUILT". (I was raised Catholic--and I mean old-school Catholic, not the modern kind that was taught in my school. Mom and Dad came up on the Baltimore Catechism and they raised me just the same--and one of the main tenets of old-school theology was GUILT. I learned it VERY well.)

I'm learning how to deal with the 4-7 PM decompensations--I knew about sundowning already, but it's different to have to deal with it. She's threatened to call the police on the nurses; she's threatened to get a lawyer, and to hide the checkbook so I can't pay the bills.  The more I deflect, the more she gets angry--so I've just developed a very basic script that I go over when she starts in on the wheres and whens and whys and whats. I did, however, finally realize: there are times she honestly doesn't know who is in her house or why, or even remember that they've been there for the last 8 hours. That's got to be terrifying.

I do better with being patient/compassionate when she's confused; when she starts out angry at me already, it's a lot harder to respond non-defensively, but I'm trying. This is where I have to be very conscious of my own emotional buttons, and recognize that this is NOT 25 years ago, or 30, or 35.But man, it is DIFFICULT sometimes!! The constant implication that I'm doing something wrong, or not doing enough, or working against her....And she has a sharp tongue when she's mad, always has.

I'd never seen or heard the word "anosognosia" before now--which is weird, because I am a MAJOR vocabulary nerd. This one's a whole new concept to me, and also it gives me pretzel-brains just trying to think about a disease which makes you unaware that you have a disease. But boy oh boy, do I recognize its effects in my mom! She's convinced she's 100% steady on her feet, her memory is fine, and everything is just peachy, so why would she need any help?  She's also demanded that I get the diagnosis in writing from the doctor--because apparently I'm making it up, as she sees it, for some benefit of my own--so I talked to her doctor and he's sending me a letter. (I'm more interested in having it just in case she DOES call the cops on the nurses--a document from a doctor saying "this person has dementia and can't safely live alone" seems like a good thing to have under the circumstances.) She's pretty much decided that she doesn't believe this doctor (or the other two doctors who also tested her, or the brain scan, or....oh look! Anosognosia again!! ) so I've told her that if she finds a doctor who tells her she can live alone, I'll go along with it.  That seems to slow her roll somewhat, at least sometimes. Some days she just stays mad; I'm learning to deal with that, as well. 

I'm going to do what I can, for as long as I can. That's the best I can do. But man, I miss my mom. This disease just sucks.

Chela Z

Hi everyone,

I just joined the group today. My mother, who is 96 and has advanced dementia, has been cared for in her apartment in NY (I'm in CA) for the past 4 years by a live-in person who manages her care, plus now 24-hour a day aides who come in and take care of her, helping her get to the toilet, making meals and reminding her to eat, reading to her, etc. This all fell apart about a month ago when several of her caregivers, including the live-in person, were diagnosed with COVID and were not able to come in. We were down to one person who stayed with her even though she was getting sick herself, and finally, after a positive COVID test, Mom went to the hospital, although she never developed symptoms. Given that the caregiver situation was in disarray, we put Mom in a MC facility, breathing a sigh of relief that she was in a place where COVID was being managed and where there was back up in the event of workers getting sick.

Well, as it turns out, the MC facility does not provide close to the level of care that Mom was getting at home. They check in on her ~2 hours or so. They don't make sure that she eats. They don't get creative when she refuses to take medications. She is now incontinent and she sits around in soiled diapers for 2 hours or more. Their protocol is that showers happen once a week (sponge baths other days). They have no way to watch her at night, and the first night there she fell. Is this typical of what to expect in assisted living/MC facility?

If anyone has any recommendations in NYC for a better place and/or someone who could help manage/oversee Mom's care at home so she could return, I would greatly appreciate it.

RunningWorried76

I think at least one response above was to not refer to them as nurses. That is great advice. PWD usually don't want feel like they need help or that even anything is wrong with them.

With my mom, who lives with us now, we hired an in-home care assistant to help her out during the day while we work (wife goes off to work, I work from home). Before we had the assistant, we were afraid mom would reject any help. What we did was have the lady come over one night for a small birthday party for one of the kids and introduced her as a friend. Which, technically was true, as she was a friend of a friend. Then the next day, when the assistant came over in the morning, I told mom that 'Jane' (that's not her name, but I don't to use real names on here) was over and I was wondering if it was ok if Jane helped mom get dressed, etc. She agreed right away. I was pleasantly shocked! Keep in mind that mom thinks nothing is wrong with herself. I can't even say the D word around her.

Since then, mom and Jane have pretty much become great friends. I think mom actually thinks of Jane as more of a 'butler/maid', but she always also says how much she loves Jane, "when is Jane coming over", "is Jane coming over today?". "Oh, Jane! How are you doing? So glad to see you!" It's amazing.

Now, maybe we just got a little lucky and/or blessed (I think a bit of both), but I'm pretty sure if I told my mom, "You need someone to take care of you" she would get angry.

Maybe give that a try. Try to somehow make it seem like it's her decision that she has help. I know the situations are different for everyone, but it's worth a try. Maybe in your situation, you can refer to the nurses as mom's staff. Her cook, her phsyical therapist, etc.

Best of luck to you.

mommo1029

Within the first minute of timidly navigating to this website, I saw your post, and I felt a million tons of bricks lifted off my shoulders.......I'm not alone!  Other people are going through this!

I also had never heard of anosognosia - it makes so much sense!  We are having to take steps that feel so underhanded and disrespectful - things like moving money out of my dad's accounts so he can't spend it all, filing POAs with different agencies while still trying to make things feel "normal" to him.  It is such a mental struggle for me, because it feels disrespectful and sneaky.  But he thinks he is fine to make decisions on his own and doesn't admit anything is wrong.  I honestly thought it was just him being stubborn before reading about anosognosia.  

And I hear what you are saying about how it is so much easier to be patient when your mom is confused rather than when she is angry or upset.  When my dad is confused, it is undeniable that he has this disease.  When he is furious at me, telling me I am ruining his life, telling me to leave him alone, when in reality I would LOVE even one day without thinking/worrying about him - those are the times that I struggle to get past, because he seems like my dad, just a very angry, disappointed version.

Ugh.

HeyDforDaughter

Dear OnlyChild1970, I'm only-child -12 years-older-than-you but can totally relate to your situation. My mom is 92 and her dementia progression follows your mom's timeline to a tea. My mom's symptoms became more pronounced in October but before that she was active and engaged despite her age and mobility. and declined rapidly from there. My question for you is you said her neurologist put her on antidepressants which improved her. May  I ask which ones and at what dosages? What time of day did you give them to her? I would love to achieve improvement. My mom (who lives with my husband and me) is currently on a low dose of Setraline (Zoloft) for a couple of months now and I'm still not sure it's helping her or if I'm giving it to her at the right time of day. She's still agitated most of the day whether I give her the zoloft at night or morning. Docs say to up her dosage but I'm hesitant to if it makes her worse. I don't have the strength to deal with worse.  Like you, I miss my mom the way she was. I see glimmers of her on a good day (or I mean good hour, its never a good whole day anymore ) but then most of the time now it's the mean-spirited, narcissistic one who constantly wants to go home (her childhood home), delusional in that she thinks anyone on t.v. is talking to her and wants to comb the house looking for them, and what hurts the most probably besides forgetting my name time to time is that the names she does remember are family members that don't even call her or never have done anything for her. Anyway, would love to know the antidepressant. Hang in there. We may be only children but we're not the "only" ones facing this. Take good care.

DocEm

Only Child and all who've answered,

Wow! When I read your initial post Only Child I thought I could have written it! Except your mother's decline has been much faster; it's taken my mom 9-11 years to get to the point you describe. (Diagnosis 9 years ago; symptoms apparent 11 years ago.) And, technically, I have siblings. Although as far as caregiving for Mom goes, especially this decade into it, I'm essentially an Only Child.

I can't add much to the great advice you've gotten here. In the past when my siblings helped more (read: at all), and when I tried to learn as much as possible (now, I'm too burnt out to try to learn anything new) -- anyway, back then, I got a lot of good advice about not arguing with Mom. That fancy word all are referencing here that indicates she doesn't think she's being unreasonable or even argumentative so SO TRUE. 

Here are two additional suggestions that I got, though, along these lines, that may be of help:

1. Instead of arguing or even trying to reason, do the "3 R's" : Reposition, Reassure, and Redirect. 

• Reposition YOURSELF into THEIR world. Logic will not work. Your LO is cognitively incapable of rejoining "our" aka "the real" world. This horrible disease locks our loved ones in the the limits of their dementia. So YOU must join THEM there. In my mother's case, she nearly bedridden in a memory care facility. Yet, for years (as she's declined from assisted living to 24/7 care to memory care in different facilities), she insists she's "going home." I've learned to agree but say "tomorrow." There are days even that does not work, and then I just agree. Because literally 5 seconds later, she's going to forget we had this exchange and insist again that she's going home. 

Before I learned this lesson, I'd try to reason / argue / discuss, etc. And that used to just upset her. Now, tho she still repeats herself, and her baseline despair at not being able to go home remains unchanged, at least each one of our exchanges about it is our first (as far as she knows). She's NO MORE UPSET the 11th time we go thru this (in 5 minutes) than she was the first time. This is a huge improvement.

• Reassure your LO how much you love them with every interaction. This doesn't need to be super emotional or heavy or deep (tho I suppose it could be, if you wanted). Just a quick "I love you," or any positive encouragement (like "that's my mom, always on the go!") or maybe just to let them know "it's alright and we'll go home tomorrow"--whatever works for you & your Mom, I've tried zillions of these. It's helpful even if she doesn't seem to hear and we know she doesn't remember. None of us tires of hearing that we're loved.

Redirect. In many ways the most challenging of the 3R's. Because we know no matter how much we TRY to redirect them, they are going to remain OBSESSED with getting home until the day they die. (I'm a religious person so I find some comfort in thinking about how Mom finally will get home, that day.) Still, trying to redirect 1000 times over is vastly preferable to arguing, and you'll be doing one or the other. Redirecting does not upset the LO's (fragile) emotional balance as much, at least not with my Mom.

2. Although AD sufferers do not remember facts, interactions, memories, ANYTHING in the external world, they ARE aware of how they feel (their interior world), and those feelings (especially bad ones, of course) can last a long time. Back when I'd have interactions with my Mom that were like arguments (even reasoned ones), she would of course totally forget EVERYTHING, even that we had talked or she had seen me that day, or 2 minutes ago, but her UPSET would STAY. It has become my primary goal to keep her from being upset, EVER. I believe this is easier for her to live with, and I know it has reduced my anxiety and stress.

You and your Mom will find your own ways to interact and cope. You are certainly doing everything you can, and more, which I'm sure is true of everyone who's read your post. You are a good daughter! (As many have said to me; I tell you, I almost got shivers up my spine, your post is so much like I could have written. Notice I also have a tendency to run long! ) 

Please know there are people out here who understand what you are going through, admire and appreciate it, and whom you have helped by posting here. Count me as one of each.

Peace to you, and your mother.

Rockym

Since I too was an only child and went through all of this (most of us do), I will pass along the best info. I received during my stress... Teepa Snow.  She has many videos on YouTube and she approaches the illness straight on. These videos were the best coaches (along with this group).  On another note, I had to stop "discussing" anything with my mom. I would say sure and okay because SHE WILL FORGET very quickly.

Your mom is discussing these things with you because it is all she has left, she is scared and once that is gone she doesn't have any idea what will happen.  My mom had a caregiver in her home who was patient and lovely, but without my oversight things couldn't get done. I moved her to an AL first, a higher AL after and eventually an MC. I will say what I tell many on this site... your mask goes on first.  We don't always do that, but I can say from my experience, once I started to take care of myself by stopping the obsessive calls, moving mom, changing meds, etc. things got a bit better.

senwithers

I don't know why I waited three years, suffered through extreme burnout, and never thought to look for help from people going through the same thing. Just reading this one thread has helped me feel INFINITELY better and gave me a few tips to help better care for my LO.

OP, you are not alone. This has been one of the HARDEST things I have ever done in my life.

I can't wait to see what else I can learn from you guys. Sending love.

OnlyChild1970

Well, we've had a couple of really good days in a row, so right now I'm pretty thankful. (We'll see if it lasts--one of Mom's regular caregivers had to call off tonight, so she's got a new nurse and that usually doesn't go spectacularly well. My hope is that she'll take her night meds and go to sleep, and by the time she wakes up, a familiar face will be there instead.)

HeyD, you asked about what antidepressants Mom was on. My mom is also on sertraline, and I believe it's the lowest dose--I want to say 25mg?--in her morning pills.  That's been sufficient for her--honestly, it's darn* near been miraculous, the difference between where she was before sertraline vs now. It's been a tradeoff, of course--she was much more tractable when she was in her anxiety stage, always glad to see the nurses, always grateful for everything that was done for her--but she's much more FUNCTIONAL now. She gets up and reads the paper over breakfast, and even makes a stab at the crossword puzzle (her morning ritual since before I was born). She can hold a conversation, even if it's punctuated with repeated questions or the odd non-sequitur. Pre-sertraline, she was about 90% dementia, 10% Mom; now, it's closer to a 50-50 ratio.....at least, til about 4 PM, the witching hour, when the ratio goes back to about 60% dementia, 10% Mom, and 30% Angry Mom.  The days where we don't have the Sundown Breakdown are good days indeed. Maybe your mom needs a higher dosage?? Definitely run it past her doctor--maybe he'll have some other ideas.

I have got a long, long way to go before I can implement most of the wisdom I've found here already. Here's where MY stubbornness and inflexible worldview come into play, I think, as well as some artifacts from my pre-dementia relationship with Mom. 

Even before dementia, Mom had some SERIOUS trust issues, with the world in general but with me specifically, and not without good reason. The most prominent feature of my personality, the one that informs my every action, is this: I am the most conflict-avoidant person you can possibly imagine. This led to a lot of...let's call it "dissimulation"...during my teens, 20's and 30's, which took a toll on our relationship.  So for a lot of reasons, even though I know it would make it so much easier to just tell her whatever...I also feel compelled to be truthful with her. Intellectually, I realize the rules have changed now, but I still have this guilt. And also, a slightly-more-relevant concern: if she catches me in a fib now, she'll dig her heels in even more forcibly and I won't be able to get her to do anything. That MAY be more my fear than any feasible reality--more likely she wouldn't even remember the interaction--but this is all so new, relatively speaking, that I'm still not good at separating real fears from overblown ones. And also, have I mentioned GUILT?  

All the same, though, I'm learning a lot here, and I'm grateful to find people who have been down this road, or who are currently travelling it too. Thank you all for being here!

HeyDforDaughter

Thank you! Mom has a video visit with her  palliative care doc tomorrow. I'll ask about dosage of the setraline. Thanks again.

GrannP

Hello I am new here and just wanted so say I am my mothers caregiver but she lives alone in an apartment.  She has someone only a few hours in the morning.  I talk and see her using Alexa.  I understand what your experiencing about no time for youself.  I wish I knew how to not be so exhausted.  I also work full time and have 2 adult sons still in my home and have no room to bring in my mother very frustrating

dancer daughter

I have the same things going on with my mom. Freaking me out. Basically managing her independence with care support. I  live in a different town and am trying to make arrangements to move her closer to us because I know it is inly a matter of time. The mother/daughter dynamics are so intense! She basically relies on me but doesn't believe anything i tell her (thought she will believe my husband or the doctors - a result of her upbringing). It's really hard. I love her so much, but am trying to figure out how to to do the best for her with this disease, and not make my life a living hell in the process.

Azadi

Another medicine that hepled my mom besides sertraline was serequel which helped with agitation. I combined it with magnesium twice a day to keep her calm.