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I haven’t posted in awhile. At this point, my mom has been in an assisted living facility for four months. She thinks she is adapting well, I quietly disagree. She still refers to it as being incarcerated, and after we are out together for a day, her stress level visibly increases as we pull into the parking lot. She is socializing with people but spending the majority of the time in her room, by choice. She was a loner before she came here, so this is not unexpected. I would have expected my own load to decrease significantly once she was settled in AL, but that has not been the case. We communicate every day by text or phone, and I see her 3 to 4 times a week. I also volunteer there twice a week running a crafts class and an exercise class. While my doing this benefits her in general and she attends both classes, I know she resents my spending time with the other residents and not specifically with her, even though I visit with her separately in those days as well. I am trying to protect my days away for my own sanity and health, but she has developed a pattern of hating on me on the days I don’t see her, and letting me know how little I think of her or care about her welfare. She refuses to use the services because they aren’t “clean” enough (this is a very nice facility), and she wants me to do her laundry, wash her hair, and she has asked to use my shower but I’ve drawn the line on that. It has been absolutely exhausting and very frustrating. At the same time, I can empathize with her personal battle to retain what’s left of her independence while her brain and body are slowly betraying her.



My current dilemma is her health. She has had a number of symptoms since arriving. Lightheadedness in the beginning, gut issues as of late, and most recently, the sense of being feverish and feeling like she’s “burning up”. She doesn’t have a fever, and we have been to her NP several times. I personally believe these are all manifestations of stress and anxiety, and the NP seems to agree as she has found nothing wrong. I know it’s always possible there is something undetected going on, but for what it’s worth I’ve seen her blood work and her numbers are quite good, and better than they’ve been in several years. I’m admittedly anti-drug and believe problems should be resolved via nutrition and physical activity whenever possible, but I feel that she could really benefit from a sedative. She is already on the lowest dose of trazadone, but that has had little demonstrated impact on her anxiety. The NP prescribed Arisept following our last appt, but I have been reviewing the clinical studies and literature available and am not impressed. I personally don’t think this is the way to go, as she has demonstrated great sensitivity to meds in the past (it took two years to get her heart meds squared away). I think hitting her with new side effects now would push her over the edge. I have been frustrated with the doctors’ cavalier attitude in the past with regard to “trying” new meds and swapping them around with little regard for the impact on an aging body. After “trying” metoprolol for a few weeks last year, my mom’s memory took a severe and permanent hit. I don’t see enough evidence in the literature that Aricept will help her long term. I really feel she would respond best to a straight sedative. My question is whether there are effective sedatives that won’t exacerbate her memory issues or cause a boatload of other side effects? Her memory is very poor right now, in fact she often can’t retain what I told her five minutes prior. Dementia is still relatively new to me and I am slowly navigating my way through it, but my gut tells me that her early stage dementia is causing her a great deal of the stress, and the stress is manifesting in various physical symptoms and her lashing out at me while simultaneously clinging to me like a child.



I would appreciate any guidance you could give. Many thanks to this wonderful community.

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I think the bigger issue here is that you're not setting enough healthy boundaries between you and your mother.
The fact that you visit her 3-4 times a week, plus volunteer several days at her facility is way too much time with her. Of course she doesn't have to interact with the other folks there as you are pretty much there all the time.
I would perhaps cut back on your visits to just once a week, and limit your phone calls and texts to just a few days a week as well. There is no reason that you must text or talk every day. If there is an issue the facility will contact you.
I can understand you doing her laundry as often times otherwise her clothes might end up in someone else's closet, but I would draw the line there. There's no good reason that you should be washing her hair or anything else as the aides can assist her in doing that when she gets in the shower.
You say that she's adjusting well to her new home(though you're not)so let her keep adjusting and get used to you not being around so much.
You may be surprised just how well she really does, and in the end she may not need a sedative after all.
You placed your mother in this facility so she could get the 24/7 care she requires, so let these good folks do their job, and you my dear need to take several steps back and let go of the reigns a bit so that they can.
You are making it harder on yourself than it needs to be.

Now as far as Aricept is concerned, it's pretty much hit or miss when it comes to slowing down any dementia symptoms. And even if it does help at the beginning, it's said to loose its effectiveness after about 6 months. And if your mother has medication sensitivities, it may not be worth the side effects as they may just outweigh any help the medication may provide.
I believe doctors are quick to prescribe it because they really don't have many other choices at this point.
I wish you and your mother well.
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Please practice more self care by backing off on the time of visits. I fully agree with you staying involved, as mom needs an advocate, but you need to do it in less time and listen to zero complaints from her about it. The minute it starts, you’re off the phone or ending the visit with a quick “we’ll talk more when you’re feeling more positive”
I have no experience with Aricept but can tell you that a small dose of Zoloft was a huge help to my dad in his last 10 or so years. He’d experienced so many losses, was lonely, and frequently got sad. Zoloft tremendously lessened this with no side effects apparent to us. He called it his “attitude medicine” as he could tell it helped his attitude. It may be a possibility for your mom
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You're a helicopter daughter. Back off, as others have said.

You're trying to control everything about Mom's life, so naturally when you aren't there, she's at sixes and sevens. You're giving her no opportunity to be cared for by others or to assimilate into the community.

As to the meds, anything that controls her behavior is affecting her brain, and since that's where dementia is located, yeah, it's going to have an effect. Whether it will make it worse vs. making it "different" is up for discussion.

You should be focusing on the quality of her life, and if the medication helps that, then so be it. However, if you try to look objectively at the situation and determine you the cause of some of her anxiety, then perhaps a holistic approach would be to back off and see how she does with less interaction with you.

Don't just stop showing up, have a conversation with her so she knows you won't be coming by as much for a while. Quit doing her hair and laundry, too.

Tell her you're going on vacation if need be, and consider doing it for your own mental health.
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I agree with funkygrandma and daughter below. This is becoming habitual and almost obsessional behavior on the part of your mom and you. Much of placement and living in care is attitude. Generally we enter with the same attitudes we carried throughout our lives, and we live with them best we can, adapting and adjusting. Or we don't.
There is no "answer" to the end of life losses we have. They are constant and there's no upside. I guarantee you: I am 80. We lose things one at a time, and adjustment is a crucible.

My brother when he entered care said "you know, hon, it reminds me of when we were young and everyone was trying communes. They all bickered and complained constantly. Same here. It's like when I was young and in the army. I didn't much like it but I made the best of it".
Like your Mom he was a bit of a loner, happiest in his rooms reading old car books and car magazines, and etc. But he would come out and visit, watch some news in the common room, attend bingo once in a while, take a car tour to the movies, whatever. Did the best he could as he had always done in his life.

Your visiting and being there so much may not be helping your mom. It is worth a try cutting back just a bit.
As to medications, I just don't know. Some are helped. Some are not. For some there is a mellowing of the mood, but a worsening of the balance that can lead to falls. The back and forth of drugs and drug cocktails can become obsessional in itself.

I don't know about your Mom's facility, but at my brother's ALF there was actually a way they could reach out to a psychologist to make visits. They were covered by medicare as I recall or by my brother's friend's supplemental. I do know the visits helped this man adjust just with a bit of talk therapy. He was able to talk about his feelings.
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I don't agree about the phone calls. I see no problem in having a set time for calls. In my Moms AL they started getting Mom ready for the night about 7. Not in bed just in PJs and comfortable in her room.
Maybe right after dinner or after she is comfortable in her room call or text. Just to ask how her day was or to say goodnight. It doesn't have to be a long conversation. When she starts to complain tell her she needs to allow herself to adjust that you can do nothing about it. If she keeps going, cut the call short.

The craft thing, if you enjoy it continue it but count that as visitation days for Mom. You can always visit with her before or after the craft. I never spent more than a hr with my Mom. But I lived 5 min away. Some days it was just a pop in to bring her laundry.

I did do Moms laundry. It wasn't that much and the washer and dryer did most of the work. Her bathing, toileting and dressing were the Aides job. With bathing comes hair washing. I did none of these things once Mom was in the AL. Thats why u pay the big bucks.
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The human body was not designed for all these chemicals that are keeping it alive regardless of side effects. Everything has side effects. Passed a certain age, I guess we need to pick our poison e.g. keep the heart going with metoprolol and accept the side effects or say screw the heart, I'd rather not be depressed/dizzy/etc and die of a massive heart attack.

If she needs an antianxiety medication or an antidepressant, or both, see a geriatrician who knows much more about how these drugs affect the elderly. And many geriatricians are excellent at weaning patients off of meds that may be causing unwanted side effects.
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I have read a few responses. Everybody's situation is different. I experienced everything you are and moved back home around 13 years ago before my mother's passing in January. I've been through all her stages of dementia. All her critical and severe issues up until her last one. It's good to hear others experiences but in the end it's you're decision and you will have to live with the decisions you made once your mom is gone. People saying to cut back or don't talk as much or spend as much time if she starts complaining.... That's wrong. It's your mom. If she's got dementia you will not be able to reason with her. That's not how dementia works. You will only end up arguing with her or upsetting her and yourself. Can you imagine today how you are fine mentally and people telling you your wrong about everything and how you should feel and you have no idea you have dementia?? You think it's them.. You might even know something is wrong with you. So, you might cry alone wondering what is wrong with me and now the only person you are talking to or who you know or remember right now is not coming around or talking to you as much... She's going to get worse and go into depression along with the dementia which will speed up that decline. It's harder for the family member or caregiver because it's hard seeing them decline. But you don't want to upset her. I would differ and say spend as much time and talk as much as you can because one day you will wish you would have spent more time and talked to her more. Unfortunately, her time on this earth is unknown. And with dementia it can be sooner than later. She doesn't know what's happening to her. She thinks she's fine. So, as hard as it is you have to find a happy medium somehow. But pulling back might not be the answer and if you do and she declines faster you don't want to have any regrets. That will be hard to live with. Being the only caregiver if you are, is a very hard journey. And it is harder on you. However, it's funny how people make comments about pulling back and thinking more about yourself when our parents didn't pull back with us growing up.... Their time at a certain point is limited. We have the rest of our lives possibly without them. But they sacrificed for us. I never thought twice as hard as it was to go through that with my mom about the sacrifices I had to make and the changes I had to make from my own life to take care of her. I would do it again. You only get one time. And in the end (I'm not religious) but God granted me a moment with my mom before she passed that I might not had gotten had I chose to do things differently and not honored her the way I thought was right. It's not to say anybody else's way is wrong. But I believe and I know so many things happened had I not been home she wouldn't have made it for sure that long period of time. Dementia is going to have her possibly forget other things that affect her health. You don't think about it until they are gone. My mother went in the hospital for bowel obstruction. Not dementia related things. It was from a surgery 9yrs ago and old scar tissue blocking her digestion. Anyway, I just didn't think dementia was the sole reason but her mobility and ability to know how to do things and how the body and mind work it did. Just be mindful of the things you do and please try and find help or work and talk with the facility about solutions. It's going to be hard because she only wants you to do things. Because she's comfortable. That's what dementia does. Maybe a family member she's comfortable around or if you can find a good caregiver she is comfortable with or companion then use them. It will help you both. I tried to use herbal meds and not so much meds prescribed because they prescribe so much and my goal was to eliminate if possible. Not add. Also, just because they are Drs doesn't mean they have the quick fix. It's guesswork. It's like a trial and error situation. Do your due diligence which you have.
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Fawnby Apr 2023
Our parents didn't pull back on us growing up? Some of them did. It's wonderful if you had great parents who put you above other things in their lives, but not everyone was that lucky. That's why we get so many posters who are conflicted and in pain because they feel they must take care of parents who made their lives miserable when they were kids.
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Perhaps you are overdoing this caretaker thing. You are there so much she will never acclimate herself to her new home.

There is a fine line between caring and over caring to the determent of our LO's. You are there 5 days a week, call everyday as well, you are making her totally dependent on you.

Sit back and think this through, are your actions really helping her? Or are you doing this to make yourself feel better?

Sending support your way.
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A lot of these meds actually have so many side effects you have to wonder if it's worth it.... I was always worried about that. So, my mom just had BP, Cholesterol which she didn't need, and dementia meds. Losartan, amlodipine, and Atorvastatin/Lipitor. And I made sure to give her a multi with D3 and cranberry gummies for urinary health.... But be careful to just agree with what they prescribe. Some as I found out do not work and do more harm. I think you are doing the right thing and have the right mentality with the meds. In closing please try and get help however you can to not only make her comfortable with this terrible disease but to also help you to maintain some sense of sanity and peace. It's hard but you can do it. Lean on who you can to help you. You can't do it by yourself. Read up on Dementia and what it does to a person. Maybe it can help you understand what your mom is dealing with. There may come a point where she can't communicate. You'll wish she could call and talk to you or even if the conversation isn't that great or she repeats herself it's still her communicating. Regardless, I wish you well. I hope you are able to get the help you need to help both of you and give you both time to make memories and you can enjoy the time you all have together. It's a tough road but people used to tell me to take care of myself because if I'm not healthy in all aspects I won't be able to help my mom. So, I do agree somewhat with the responses about taking time for yourself or making time for yourself for your own health. It's just finding the balance so you are both happy. Hang in there and just believe everything will be okay and go day to day. Make the next day better than the last and if you are in to meditation or yoga or anything to relieve stress and clear your mind please do!!! I wish you both well!!
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The thing is the only way to know whether a medication is going to have benefits and/or side effects is to try it, IMO you are lucky to have a doctor who is not rigidly against looking for solutions. Studies have repeatedly said that Aricept (donepezil) does benefit many people, whether the the possibility of mild improvement or slowing the progression is worth the possibility of side effects is ultimately up to you.
As for her anxiety - I think that's a much bigger stab in the dark, meds like antidepressants can take weeks to titrate up to see whether they are helpful and more weeks to titrate down safely if they are not. Simple anti anxiety meds like lorazepam are known to be fall risks, plus they are highly addictive and were never meant to be taken long term.
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Thank you everyone for your thoughtful responses. I am so grateful to have found this community. I cannot be so reactive to my mom’s despair, and I do understand that can be manipulative whether intentional or not. She does need to get more comfortable with telling her aides when she has a problem, and not me. I have tried to explain to her that these “strangers” as she calls them are now her extended family and they are there to help her. I’m not sure she’ll ever get there. She’s a very private person and has never done much of anything in a communal setting. I have been setting boundaries and she is not happy about it, but I am quick to tell her if I’m dead or hospitalized she will really be in a jam. The text check-ins are something we have always done, so I’ll continue but they need to stay short. As I reflect on all this, I want to make sure our interactions are limited to quality time - long, meaningful conversations which we thankfully can still have, and activities that we both enjoy. That means, as many of you have said, nipping the negativity in the bud and not being party to it. Still, always, learning. Thank you 🙏
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