Mother diagnosed with dementia, denies it, refuses medication

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bluerose

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The title pretty much sums it up. My mother is in her late 70s and has a lot of health issues. None of them are particularly life-threatening, but one of them is causing a lot of discord at home. And that is dementia. She has been diagnosed with it by several doctors. They all concur that medication is indicated. She refuses to accept the diagnosis (“I’m not crazy!” is her reaction, no matter how it is explained to her) and so she refuses to agree to treatment. This is putting an incredible strain on my sister, who lives with her, because she never knows what kind of a day Mom might be having, if the things she says that have happened really have happened (several interesting episodes with the neighbors have come to light), what kind of mood my mother will be in because she forgets things my sister has told her and she believes my sister is conspiring against her and stealing money from her. And the list goes on and on.

I live over a hundred miles away and only get to visit a couple of times a month. I know there is a lot of tension between my mother and sister and I get stories from both of them about the other all the time. I don’t take sides, and I know they both lose their patience and tempers flare a lot, but part of them problem is trying to get my mom the help she refuses to believe she needs.

Has anyone else had this experience? How did you deal with it? My sister works full-time and is a single mom. She works in the medical field and has called in a lot of favors from friends and colleagues who are therapists, nurses and doctors to help with my mom’s care, but any hint of full or part-time nursing care or medication for dementia brings up a huge storm of anger and denial. Even the doctors won’t broach the subject because they know that my sister ends up with the worst of it, getting accused of conspiring with the doctors to have my mother “declared crazy” (whatever that means). She is on anti-depressants but she says it’s because she’s depressed that everyone is against her and trying to say that she is “crazy”.

If you have no advice, then I’ll take prayers! Thank you!
 
My mom went through this and several of our relatives have, too.

I went to a one-hour talk, given by a geriatric nurse who specialized in dementia. It was very helpful. I’d suggest looking into the geriatric psychology literature. If your sister can get support from someone who specializes in dementia care, so much the better. Just the hints she gets will be like gold.

In my experience, this:
–There is nothing that will cure her, and although some things might slow it down, there are things she will not tolerate. Whether she throws up or throws a fit, it isn’t tolerated. We did get her to take one medication that her physician did not describe as being for dementia but as something that was meant to slow memory loss in older people. Still, she might not “tolerate” even that much.
–When you first have dementia, every day is a bad Monday. Things are going wrong for no reason, you’re messing up things that you know you can do in your sleep, everyone is acting like an idiot and treating you like an idiot, and your memory is still quite good enough to remember that it has been an awful, terrible, really rottenly bad day. The paranoia isn’t caused by that, but in that context, it does seem to make sense to her. I mean, really, what is worse than a month of Mondays capped with a doctor and daughter who say that maybe your brain is the problem? (The only “good thing” about totally losing your short-term memory is that you can’t remember what an awful day it has been. I’ve seen a lot of dementia patients have a much-improved outlook on life when their short-term memory got worse, surprisingly enough.)
–Distraction is your friend–“Oh, that’s a bummer. Well, they’ll turn up. Why don’t we ____ now, instead”. Empathy is your friend–“oh, I hate it when I can’t find my glasses…oh, here they are!” Talking “sense” is not your friend. If she isn’t getting it, then she’s not going to get it. You may as well have someone asking you to do vector math in your head. It is frustrating and embarrassing. You wrinkle your brow, act as if maybe you’re the one who’s not “seeing it”, and change the subject. You don’t say, “Mom, you see? You keep losing things. I keep trying to tell you, this isn’t right. You have a problem!” That dog won’t hunt.
–“Soap opera talk” is your friend. A long-running “story” show always has dialog that brings people up to date on what the “story” is without being obvious about it. That’s what you want–that is, drop subtle clues to help her keep up without her having that awful feeling that she has no idea what anyone is talking about. You will not hurt her memory by covering for her–so cover for her!! (This is possibly the best advice the geriatric nurse ever gave us.) If she calls the keys “those car-starter things”, don’t correct her. Just communicate…“oh, here they are, is this what you’re looking for? Oh, silly me, no that’s not what you’re looking for. Sorry about that.” Whenever possible, when it won’t hurt anyone, let her be right. When you can’t let her be right, you can still say, “I know this frustrates you, but I can’t see your point. We have to do X, instead.” At least empathize with how frustrating it is when someone just cannot see your point. (But DO NOT let her catch you being patronizing. That’s too far.)
–Do not “break news” to her when she is not going to remember it. If she doesn’t remember her sister is dead, don’t remind her if you can help it. Instead, try to meet her needs. “What are you doing, Mom?” “I’m trying to call Lucille, I’m going crazy with all of you.” “I’m sorry, but you’re not going to get her. Lucille isn’t anywhere near a phone.” “What? Why not?” “That’s a good question–like Lucille ever gets ten feet from the horn!–but I guess being away from a phone is restful. She’s OK, though. Maybe you could call Sally? Or we could go for adoration? Since Lucille isn’t around to talk, what would help you out? I know we haven’t had a great day, but if I can help you out, I’d like to.”
–Figure out how to get your sister respite care. There is nothing worse than living with someone whose dementia has made them unpredictable. It will only get worse. You cannot believe how tiring it is to be in that situation, especially when you become “The Evil Daughter”…and every dementia patient seems to have an Evil Daughter or an Evil Son. If at all possible, you or her doctor ought to be the person blamed for “the badness”, BTW. Your sister will have to repeat, “I’m sorry, Mom, but the doctor says…” “I don’t care what the doctor says! You’re all out to get me!!” “Well, the doctor said you had to do this, and Pam says I have to do what he says. I see your side, but I’m between a rock and a hard place here, Mom.” Your Mom will be mad, all the same, but it will hurt nobody for your sister to hide behind a Blame Game. Your mom is not dealing in reality, so while I’d stop short of out-and-out lying, your sister needs to do what she needs to do. Give her permission to blame you or whoever, just to get out of the firing range. She deserves that.
–She’s going to have to “Mom proof” her house. At our place, this meant putting in a cut-off switch that Mom couldn’t figure out how to access for the kitchen appliances–better she be frustrated than that she burn the house down–putting “The Club” on her car, and all sorts of little things like that.
–We also were able to get live-in help for my dad that my mom would accept. Maybe your sister can get an “exchange student” or someone she’s “helping out” by giving her odd jobs at her house? Any excuse to have someone drop by or hang around the house all day. Mom may not like it, but pretty soon it will either be that or move Mom out.
 
Thanks, EasterJoy, I’ll pass your information on to my sister!

I try to relieve her when I can, but living so far away doesn’t make it easy. She does have some rather saintly neighbors who come over and help out, but my mother makes it hard by complaining that they don’t do things the “right” way (meaning HER way), but of course, she only complains to my sister and it bothers my sister that Mom seems so ungrateful for the help. What’s even harder is that Mom is constantly paying for every little thing the neighbors do for her, whether it’s coming by to help with the dishes and laundry or picking up a carton of milk from the store. My sister has told her, “You don’t need to give the neighbor ten dollars for picking up milk. She was going to the store anyway and offered to pick it up. You didn’t ask her to make a special trip.” And Mom replies, “Well, maybe you have no shame in taking advantage of the neighbors, but I don’t need charity!” Of course, this adds up over time and my mother complains that she has no money for anything (meaning to pay for the neighbors to help her.) She rarely leaves the house and only goes out when my sister can bully her–for lack of a better way to say it!–into getting dressed and going. She used to be quite active but her arthritis is bad and she refuses to use a wheelchair or walker or cane in public (“How embarrassing!”)

I appreciate your advice and I’m sure my sister will find someone to give her some help in dealing with this!
 
We have a remote controlled power plug that is out of sight behind a cupboard, that we use for the entertainment centre. The remote unit turns it on and off, and is great for controlling what has power going to it. We use it so that the youngest can’t watch TV at 5am, so I can see it could be very useful for other appliances as well.

The remote comes with 4 power plugs that work off the same remote. You place them in the wall sockets, and plug your appliances into them.
 
If u dont believe just read this . It means adam was created from eve and not otherwise .So she is suffering from dementia , that simply means she wont b able to gain insight into her disease. Its absolutely natural. in such cases we have to force the treatment. . I am deeply religious but oneday i came across an article in medical journal . and i happened to read the book . it shook me completeltly . As i am hindu we dont allow our mind to question religious thinking . But then i am surgeon and i had to accept this , READ this if it helps u to feel BETTER
“Scientists have somehow missed definitions of gender in human beings,” states Dr. Makarand Fulzele. Insights gained from years of practice as surgeon makes him wonder if indeed we have overlooked facts staring in our face. Nature has a tendency to hide many secrets but at the same time it provides enough clues to unravel its mysteries. Dr. Fulzele picks up loose threads from life to stitch together the theory that man is an extension of woman in his new book, “Man Is the Extension of Woman: Know the Ultimate Truth about Yourself” (published by iUniverse). Dr. Fulzele’s book explores similarities between men and women against the backdrop of their genetic differences, physical variations, and emotional and intellectual dissimilarities. Dr. Fulzele who is a successful surgeon further explains in his book: The main hypothesis I discuss in this book is that, if a woman lives long enough she will be converted into a man physically. A similar thing can also be stated about man. It is wrong to categorize humankind into two genders as it implicates that they are extremely dissimilar and physically opposite to each other. I try to prove that man and woman are just two different stages of one developmental process. And physically they are very similar. The ideas presented may sound unconventional but Dr. Fulzele implores readers to consider his point of view with an open mind. “Your world will not change if you do not agree with me. But if you agree with me, how does it change your world? If more people agree with you and me, how does it change our world? The possibilities are limitless.” About the Author Dr. Makarand Fulzele is a successful surgeon and medical superintendent of a government hospital in Mumbai. He enjoys tapping into hidden and mysterious regions of the human mind, where many strange thoughts occur and get ignored. He is also the author of “Rainbow,” a book similarly dedicated to the spirit of light.
bluerose said:
The title pretty much sums it up. My mother is in her late 70s and has a lot of health issues. None of them are particularly life-threatening, but one of them is causing a lot of discord at home. And that is dementia. She has been diagnosed with it by several doctors. They all concur that medication is indicated. She refuses to accept the diagnosis (“I’m not crazy!” is her reaction, no matter how it is explained to her) and so she refuses to agree to treatment. This is putting an incredible strain on my sister, who lives with her, because she never knows what kind of a day Mom might be having, if the things she says that have happened really have happened (several interesting episodes with the neighbors have come to light), what kind of mood my mother will be in because she forgets things my sister has told her and she believes my sister is conspiring against her and stealing money from her. And the list goes on and on.

I live over a hundred miles away and only get to visit a couple of times a month. I know there is a lot of tension between my mother and sister and I get stories from both of them about the other all the time. I don’t take sides, and I know they both lose their patience and tempers flare a lot, but part of them problem is trying to get my mom the help she refuses to believe she needs.

Has anyone else had this experience? How did you deal with it? My sister works full-time and is a single mom. She works in the medical field and has called in a lot of favors from friends and colleagues who are therapists, nurses and doctors to help with my mom’s care, but any hint of full or part-time nursing care or medication for dementia brings up a huge storm of anger and denial. Even the doctors won’t broach the subject because they know that my sister ends up with the worst of it, getting accused of conspiring with the doctors to have my mother “declared crazy” (whatever that means). She is on anti-depressants but she says it’s because she’s depressed that everyone is against her and trying to say that she is “crazy”.

If you have no advice, then I’ll take prayers! Thank you!
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Easter Joy,

Thanks for the great advice. My dad is 77 and we are just starting to deal with some dementia or Alzheimer’s. I am going to share this with my mom. It’s always been my thinking that there is no need to remind him of what he has forgotten. If he forgets that he went out to eat with friends two weeks ago I would just let it slide. My mom will say, “Don’t you remember”, and try to coax his memory. Sometimes he’ll remember, but I wonder if it’s worth it if it makes him feel bad, realizing how much he is forgetting.

Also, just today, the doctor told them to think about my dad taking Aricept. He wasn’t pushing it, but just said it might help. Does anyone have any suggestions on this? If he is still functioning pretty good, mainly just some short term memory loss, do the benefits outweigh the sideeffects? We are leaning towards no, but any (name removed by moderator)ut would be appreciated. Thanks
 
10gr8kids said:
Easter Joy,

Thanks for the great advice. My dad is 77 and we are just starting to deal with some dementia or Alzheimer’s. I am going to share this with my mom. It’s always been my thinking that there is no need to remind him of what he has forgotten. If he forgets that he went out to eat with friends two weeks ago I would just let it slide. My mom will say, “Don’t you remember”, and try to coax his memory. Sometimes he’ll remember, but I wonder if it’s worth it if it makes him feel bad, realizing how much he is forgetting.

Also, just today, the doctor told them to think about my dad taking Aricept. He wasn’t pushing it, but just said it might help. Does anyone have any suggestions on this? If he is still functioning pretty good, mainly just some short term memory loss, do the benefits outweigh the sideeffects? We are leaning towards no, but any (name removed by moderator)ut would be appreciated. Thanks
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Realize, too, that this will be hard for her. She’s used to him forgetting things and needing reminding. Having him forget things not due to the natural aging process that they and all their friends are going through is quite different, and not easy to accept.

It will help her, I think, to realize that nothing that upsets him will help him. She may be very much helped if the two of you can find a local hospital that offers classes for those who are caregiving for dementia patients. As I said, I went to one one-hour course, and the gems of wisdom I picked up there helped our family tremendously, not the least of which was the sense of humor and generosity with which the nurse taught her course. There are some very special people in this field, and their experience and support is invaluable. If it is available, don’t miss out on it!

As for medical advice, that is why you have a physician. If you’re concerned that he is out of his depth because he is a family practice physician, though, by all means have your dad seen by someone who specializes in geriatrics. Just as pediatric and pregnant patients are very different in their physiology than non-pregnant adults, just so patients whose livers and other organs have started to metabolize differently are very different animals. So while I wouldn’t second-guess your physician myself, I would suggest that geriatrics is absolutely a specialized field of medicine. Just as with any other issue, if your family practice doctor is on top of your case, great. If he or she seems out of their zone–and *especially *if they suggest a specialist might be a good idea!–then by all means ask to be referred to someone with more experience in this particular patient population.
 
My mother used to work in geriatric nursing. It was often found that many dementia patients were suffering from bad nutrition. They often saw great results making sure that these patients had a good diet as well as vitamin supplements such as vitamin E, fish oil, magnesium and zinc. According to her some of the results were remarkable.

They should also have a blood panel done to check thyroid level and in men testosterone levels. If any of these are abnormally low they can affect memory retention, mood and exacerbate joint and muscle pain.

Mild exercise can also help, i.e. going for a 20 to 30 minute walk each day, gardening.

I’m not saying these will cure the problem, but they might help and are not too difficult to try.
 
Father_of_10 said:
My mother used to work in geriatric nursing. It was often found that many dementia patients were suffering from bad nutrition. They often saw great results making sure that these patients had a good diet as well as vitamin supplements such as vitamin E, fish oil, magnesium and zinc. According to her some of the results were remarkable.

They should also have a blood panel done to check thyroid level and in men testosterone levels. If any of these are abnormally low they can affect memory retention, mood and exacerbate joint and muscle pain.

Mild exercise can also help, i.e. going for a 20 to 30 minute walk each day, gardening.

I’m not saying these will cure the problem, but they might help and are not too difficult to try.
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I have heard many physicians say over and over that dementia is a diagnosis of exclusion. A urinary tract infection can cause an alteration in mental status and can hang on for a very long time…cure the infection, and wow, we have Mom back. As you note, many other changes that would maybe make the rest of us feel a little “off” will cause severe changes in the mental status of someone who is older or just in frail health. Therefore, it should never be concluded that altered mental status is simply a result of aging or due to an irreversible cause, even if it seems to be a long-standing problem. That must be proven by a thorough medical work-up. On top of that, it will help even the true dementia patient if he or she is kept in the best physical condition possible.
 
I just lost my mother last Thursday. She had been in a nursing home (memory care unit) for two years with dementia. Before she went into nursing care, we tried Aricept and found it didn’t really help. I think my mom’s anxiety was actually far worse to deal with than the dementia. Perhaps your mom might be more open to anxiety medication. The one thing I wish I had done was to keep a journal. I know your sister must be terribly busy with work and her children, but it might help to have an idea of the progress of the disease, especially when she is talking to you.
bluerose said:
I live over a hundred miles away and only get to visit a couple of times a month. I know there is a lot of tension between my mother and sister and I get stories from both of them about the other all the time.
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This actually made me cry. When my mom was starting to slip, I would call my sisters. Most of them belittled everything I said and would tell me mom was fine. The would base this off ten minute phone conversations. They felt even if her memory was going, it wasn’t a crisis. It really was though, because the day to day can just be so frustrating, and on top of that it is scary to watch someone you love suffering. Dementia tore my sisters apart. Please-please-please don’t let that happen to you. Make sure you guys work together as a team. If you guys can approach your mom as a team, with love, you may get her to participate in various programs available. alz.org/
bluerose said:
If you have no advice, then I’ll take prayers! Thank you!
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I will definitely be praying for your family.God Bless.
 
Lovemyfaith said:
This actually made me cry. When my mom was starting to slip, I would call my sisters. Most of them belittled everything I said and would tell me mom was fine. The would base this off ten minute phone conversations. They felt even if her memory was going, it wasn’t a crisis. It really was though, because the day to day can just be so frustrating, and on top of that it is scary to watch someone you love suffering. Dementia tore my sisters apart. Please-please-please don’t let that happen to you. Make sure you guys work together as a team. If you guys can approach your mom as a team, with love, you may get her to participate in various programs available. alz.org/
I will definitely be praying for your family.God Bless.
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Oh, thank you for the prayers and do not worry about me and my sister! We are definitely in each other’s corner… it’s hard on her when she knows Mom is calling me behind her back and telling me that my sister is stealing her money and that she neglects her and doesn’t tell her what the doctor says or is telling the doctor lies about her and on and on. We all need all the prayers we can get!
 
bluerose said:
Oh, thank you for the prayers and do not worry about me and my sister! We are definitely in each other’s corner… it’s hard on her when she knows Mom is calling me behind her back and telling me that my sister is stealing her money and that she neglects her and doesn’t tell her what the doctor says or is telling the doctor lies about her and on and on. We all need all the prayers we can get!
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Ask her if she can find a caretakers’ support group, because these problems are extremely common. Being in the same room with people who have also fallen down an Alice’s Rabbit Hole of their own can be very helpful–particularly when the whole room can start trading stories and getting helpful hints and a sense of humor about it. I knew a lady in a nursing home who called 9-11 because she was mad at her caretakers. It turns out that this happens all of the time. You gotta laugh, or else you’d have to cry.
 
One thought from Sirach, Ch 3:
“A father’s glory is glory also for oneself;
they multiply sin who demean their mother.c
12
My son, be steadfast in honoring your father;
do not grieve him as long as he lives.d
13
Even if his mind fails, be considerate of him;
do not revile him because you are in your prime.
14
Kindness to a father will not be forgotten;
it will serve as a sin offering—it will take lasting root.”
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This applies to mothers as well, so whether or not you can get her to take meds or go to a nursing home, you should be kind, considerate and never demeaning of her.
 
**Holy Mother, please intercede for us.
Hold the sorrowful, strengthen the fearful,
give aid to all needing help or healing,
assist those who are sick, in pain or suffering,
be with those needing peace, console the lonely,
comfort the lost or hopeless, guard the unborn,
pray for those who are dying or who have died,
soften those with hardened hearts,
enlighten those who do not yet see truth,
help us be brave enough to let our hurt and anger go,
show us the way to do the right thing,
protect those who are in danger, and guide us from every evil;
may all who keep your sacred commemoration
experience the might of your assistance.
Amen **
 
I think there are many forms of dementia, so some may present a greater risk to sufferers than do others. My mother also suffered from the condition, and for her it manifested primarily as short/medium term memory loss (which gets worse…), but not loss of control of self.

Nevertheless, this was a dangerous situation, given she lived alone. Consequences included:
  • inability to take medications safely;
  • forget to shop for food;
  • inadequate diet;
  • forget to wash clothes / bed clothes
  • etc.
We “caused” mum to relocate to a retirement village with a small 6-person dementia unit (very nice, with separate room for each lady, etc.). This was not easy to achieve, but had to be done. We made the case based on practical considerations: eliminate burden of housework & shopping, meals and other services supplied, ready access to Church/Mass, availability of company, financially efficient, etc. Certainly, no talk of “dementia” or going “crazy” etc.

Best Wishes.
 
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