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My mother has been sitting for days now crying, depressed, and asking why my father, who has been dead for 25 years has left her for other women.. Right now she is yelling at me to write him a note telling him where we are going to be. She's angry when we tell her he's dead. She doesn't want me to lock the front door at night because he won't be able to come in. She says over and over again she doesn't know where he is or why he won't come home. She asks everyone who comes in the door if they have seen him. We've tried playing along and aswering with simple answers letting her know we haven't seen him we don't know where he is or how to get in touch with him. We've tried telling her that we did see him and he is stationed somewhere else and can't come home. Nothing seems to satisfy her and to be honest I am completely out of patience. It is so hard to come home from a long day at work to this. It is nonstop until she goes to bed and she begins the minute her eyes open in the morning.
Suggestions? Advice? I'm really at my wit's end with this.

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If her doc is 50 or older, it's unfortunately embedded in their training that dealing with the elderly is a bother. My first DH was a ped. cardio. and when he was in training it was routine that when elderly came in they would be noted on charts as "crocks" or gomers (get out of my emergency room). Really. The low man on the totem pole on-call would be stuck with the old ones. Kinda like hazing. Also the reinbursement from Medicare is so low that many MD's can have a more profitable practice by not seeing any elderly Medicare patients.

If my mom didn't have a federal BCBS secondary policy, her opthalmologist, neurologist, cardio. would not see her as medicare alone isn't taken by their practice.

Geriatrics is just so opposite of what we all learn - "you go and do and learn and grow" for the elderly they "shrink and forget and can't do and stop". Something has got to be figured out for dementia. When we the boomers get into our 80's & 90's and if still there isn't workable solutions for the issues our mom's have, the system will just collapse.

Hope you sis is better and next week too.
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Thanks, igloo. We are working on finding her a geriontologist. I do feel we are spinning wheels with her current physician. We have to tell him that it is time to draw her blood, etc. I don't think he's very interested in caring for the elderly, particularly those with dementia. It appears to be out of his field of expertise.
We appreciate the prayers for my sister. She has a team of physicians working against the clock to find a way to help her.

I am , indeed, the elementary teacher. I never had children of my own outside of my "borrowed" children until now! ;)
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T - as far as I'm concerned no apologies are ever needed on this blog. We'll include your sister in our dinner prayers tonite.

You & your lil' sis have alot to juggle. If you're the one that's the elem. school teacher it must be so frustrating with your mom as dealing with dementia means that they do not experience, learn and go forward as happens in teaching. It's all the reverse and can be quite maddening for caregivers.

Try to get an appointment for her with a gerontologist. Put together a list of her med's, how they are taken and her behavior. Call your nearest medical school for names. What you've experience with her MD is such a common complaint for caregivers. Keep in mind that the vast majority of physician training is all about fixing an ailment or curing a disease. Patient comes in & presents = Physician prescribes = Patient cured. How MD's, hospitals, etc get paid is all based on that.
There is alot of ageism in health care (crocks, gomers) so finding one who likes having an elderly patient base is a gem.

Dementia is terminal and there is no cure - this requires a whole different mindset and approach to care which I've found comes from an MD who did their residency in gerontology.
Narrowing down the type of dementia she has could make a real difference for the best care for her.

What he has her on makes sense: Exelon for memory and awareness for early stage dementia; Xanax for anxiety & Lexipro for depression. It could be that the combo is just too much for your mom if she is petite or if the drugs are not given on an exact schedule or if there is any alcohol used.Whatever the case, if the meds need to be changed it will take several weeks of decreasing it to wean off of them. Xanax and Lexipro are both considered "physical dependence" drugs.

It could be that your mom's dementia is more severe than her current MD thinks, so she might need the combo of Namenda along with Exelon/Aricept. The gerontologist will have a better grasp of what's what.

Is her MD doing a clock drawing test on every other visit? Has she had a mini mental state exam (MMSE) done in the last year - this takes about a full 15 minutes to do with the elderly. Has she had an MRI to provide for a baseline for brain shrinkage?All these help determine in a more exact way at what stage her dementia is and more importantly they are used to see what her decline is after 6 or 12 months of a drug or other therapy.
Medicine is a science and science works best with data.

Telling her doc stories of what mom does is just too subjective.
What I've found works best in getting through to doc's is having them ask her a question that will show them in real-time what her thinking is like. For example, my mom has Lewy Body but until we got her doc to tell him about the rabbit she saw in her IL apt it wasn't noted in her chart. Another was having him ask her about the stealing of flashlights. She went on about how "they" come in while she is a lunch and take her flashlights and put jewelry and money in them to pay for the batteries taken.
Your mom'd doctor could ask her about her husband in a casual way so he can see what happens.

If you live where there is no nearby medical school or gerontologist (my mom lives in a top 10 city with a medical and dental schools), call a couple of the local nursing homes or assisted living facilities and find out who is their medical director is. This may also be good because if the day comes when you need to move mom into a higher level of care that LTC or SNF provides, you will move ahead in line as their doctor is her doctor and all the paperwork and crap you need for admission is more easily obtained.

Good Luck and keep a sense of humor.
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First, I would like to apologize for what was referred to by christina28 as "ignoring your responses". Since the posting of my plea for help my oldest sister has been rushed to the hospital and is fighting for her life. I have just now been able to sit down and read over your responses. I found several good pieces of advice that I'll pursue as soon as I can find her another doctor. The one she insisted upon going to should not be allowed to practice medicine. He likes to throw prescriptions at us without hearing us or investigating our concerns or possible causes of some of the behavior we see in Mom.
My mother's care falls upon myself and my youngest sister. We are doing the best we can to manage caring for her, a full time job teaching second graders, a teenage daughter with Down Syndrome, a son about to go away to college, a broken engagement, and the very possible death of a sibling.
We know Mom has dementia. She takes Exelon twice a day. Xanax, and Lexipro along with numerous other medications. We are attentive to her diet, try to feed her nutritious meals, and make sure she has plenty to drink throughout the day.

In dealing with this new behavior we have tried all possible approaches. When we try to redirect it she gets angry. When we go along with it, she accuses us of lying. When we tell her the truth she cries.

This is the second time I have posted on this site. Both times it has been when I was feeling particularly exhausted and frustrated. Upon rereading them I can see where my impatience was showing. Please don't confuse this impatience with the situation to mean that I am mistreating my mother. Again, I am doing the best I can with very little support. That's why I turned to this community. However, I have to say that some of the responses I received have left me feeling more judged than supported.
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No, don't feel like you gave bad advice... I sure didn't mean for you to feel that way... You were speaking from your experience and that is really all we can do! I had a dear friend once say medicine is not an exact science and that somewhat applies here. Dealing with folks with dementia or alzheimers disease is not an exact science as the loved one with the disease is an individual! My Mom (God Love her) has always been rather stubborn and she still is. She can hang on to a grudge till you are ready to scream... I was in no way trying to be condeming of you... this forum helps us to get other points of view... If I offended I did not mean to... please take care.
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Thank you, Jaye, for replying and not ignoring what I said. I appreciate your point of view and explanation. My Mother spent her whole life in denial --I used to call her "the ostrich". Maybe she does not really have dementia now, just an advanced form of denial? Perhaps I am mistaken to relate only to her behavior.
Sorry, all of you, if I gave bad advice. I will shut up.
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Oh Christina I do understand what you are saying about not lying however it has been my experience that there comes a point that they cannot accept reality! I talk very honestly with my Mother and try to help her grasp what is real and what is not! I cared for a little lady with advanced alzheimer's who just could not cope with the idea of her husband being gone. When she asked we would say do you suppose he is out in the barn? they were farmers... that sometimes helped. Each individual is differant. The approach I was taking was to avoid her being more upset. I don't by any means think I have all the answers... take care...
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grreat 1 and sundancer have given very good answers. Also, jaye about the UTI, who posted while I am writing.
Why would you exacerbate a fantasy? I think lying and giving them false hope is much worse than GENTLY giving them understated facts.
My Mother, at 93, has recently been Remembering things she couldn't a few months ago. She now "remembers' that my Dad committed suicide, and that my younger brother died in 03. If I had been filling her with a bunch of fabrications, she would be very confused.
Additionally, I have not brought up any of these things to her. She has recalled them on her own, which was interesting, as we usually have to initiate all conversations.
I know individuals are unique, and the 'dementia mind' is stirred up all the time, however: if the Mother in question here is obsessing over the dead husband "non-stop...from the minute she wakes up.." etc.--and daughter is getting exasperated, time for a UA, a call to a geriatric specialist, and not letting her stress out ALL DAY LONG!
It would be good if tchk4 would respond to our answers.
With Respect to all here, Christina
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Jaye and tchrk4,

Yeah! We have really-really come to understand anytime mom (85-stroke-dementia-Dad passed 3 yrs ago) gets what we call her 'doe' eyes on, and the saddness sets in that 90% of the time she is either; dehydrated, has a UTI or is experiencing some kind of discomfort/pain -- bowels/stomach/other). Once we get that discovered and corrected... we're essentially back on track. So we are hyper-sensitive at this point to 'new' behaviors especially those that play out emotionally.
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She has Dementia. What type really should be evaluated by a gerontologist to determine.

Dementia is both a physical disease and a mental health illness.Having a "fixed false beliefs" or delusion is a part of the illness.It is not going to get better, the focus of her concern may change so the belief will change, but she still has dementia,
which is terminal. The type of dementia (Alzheimer's, Lewy Body, FCA) makes a big difference in how to approach her care. That why a gerontogist is the best MD for her.

There are several Rx's out there to deal with dementia. There are the memory & awareness enhancers - like Aricept and Exelon; then the antianxiety & antidepression ones - like Ativan, Xanax. There are a bunch of "newer" depression drugs out there too, like Cymbalta, Zoloft.

My mom is on Exelon & Remeron. Exelon seems to be helping with her motor skills and attention span. She's only been on this a bit, so we'll see what's what 6 months from now. Remeron she's been on for 3 years and very positive when taken properly. Remeron is an old-school tricyclic depression drug. It's relatively mild, has a spot-on exact generic (which is very inexpensive); great for appetite stimulant & taken at night provides at least 6 hr sleep. Another old-school one is Valium.

The drugs cannot cure the underlying problem, which is dementia, but can relieve or lessen the symptoms.

I have a suggestion for you - contact her doctor and schedule and appointment for you to meet with him/her to talk about your mom. This would be a visit separate and apart from the appointment of his seeing her and you would be paying for a consultation as insurance usually will not cover this. At this consultation take a list of all the medications that mom takes
and a list of what her false beliefs are and long they last and her sleeping pattern and monitor how much she drinks (6-8 glasses a day). Have this all in writing - time is $$ for how MD's work because of how insurance pays - so they really appreciate you're having the details together. This way you are working together in coming up with a plan to make mom less anxious.
Most doc's won't charge you for this, especially if you have your stuff together and get to the point. Ask to be referred to a gerontologist if her doctor won't do this.

About the water. Our gerontologist told me that the single biggest health issue with the elderly still living in their home or living with family or in IL is dehydration. Alot of elderly don't want to drink because they know they have a problem with leaking or soiling themselves, so they think if I don't drink, I don't have a problem. Dehydration causes confusion and disorientation & lightheadedness. Combine that with dementia and you can see how this becomes a real problem.

In AL or LTC or SNF, they are usually getting prescriptions that require them drink & are watched to drink something with their meals, so they are pretty hydrated.

You need to look into yourself to decide how you want to deal with this. This is going to be a continuous issue with your mom. For some of us, reality (Mom, XXX died in 1972) works; for others white lies work (Mom, XXX is on vacation that's why they haven't been here); some may use deflection (Ignore totally what Mom says about XXX and talk about something else entirely that they will know about, like "I just saw Gone with the Wind last night, what a great movie"; for others not going to see Mom works best. If the family that is with Mom regularly can all be in agreement on the approach to take with her false beliefs that is consistent is best in my experience. Good Luck.
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got point about the possible UTI if this is new behavior is there something else going on??? Is she eating and drinking well??? My Mother recently got extremely dizzy I took her in and she was dehydrated. Simple fix really. take care and good point sundancer2!
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I think that if my husband and I were having to deal with this one (and we have several like it that we do have to combat)... we might use a lighter/factual response for this one, but it would have to stay aligned with the truth. Meaning we'd remind her that Dad has passed away over xx amount of years ago, see if that helps comfort her cognition even the smallest amount (I think that they 'sense' the truth even if they can't be clear about it and that sometimes the white lies end up unsettling them more than helping -- like they know it doesn't 'fit' and so all the screws start coming undone...) We find that tone of voice and lightness of reassurance works best in our home. When she's crying over something, especially if what she is sad about isn't quite true we just dig down to the raw emotion... she wants her husband. "Mom, dad passed away. He's in heaven with God and he is with you in your heart everyday." Can you give her a picture or a locket with his photo to have nearby? Everything depends of course on her level of dementia. Has she been tested recently for a urinary tract infection? (last question applies if this is 'new' behavior)
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From everything I have read and from my experience, Her reality is her reality you cannot change that! It is very possible that she just cannot face the fact that he is gone, if you can get her to understand she will just be incrediably sad!!! I would try to get her interested in something else, answer her with comments like he is working somewhere out of town... I know this is a theraputic fiblet but the truth won't work in this situation. Perhaps she needs to see the Dr preferably someone who specializes in geriatrics. I am really not for just medicating people however maybe something for depression or anxiety would be helpful! I know this is hard please know there are those of us who care and understand. My Father passed away in July and my Mom says "I will never be okay again." She wants to go to heaven to be with him!!!
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My Mom does the same thing but all the therapeutic fibbing in the world does not work. It just starts all over again later. There are no meds that she has been able to take, and I am at my wits end. I feel for you....but I am the sole caretaker and 24 hrs a day is getting to me. I cannot hire any help because she will not allow it....I have tried. I am surreptitiously having a PRI done this week and placing her in a nursing home. I feel horrible....but she does not know me half the time. I have big guilty but I am 63 and tired.
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4 things to do - Validation, Redirection, Therapeutic Fibbing and Medication. You cannot correct an individual with dementia - it challenges their "reality". All that does is raise their already high anxiety and it raises your blood pressure. Your Mom's reality is that he is not there - validate her feelings - "I know you miss Dad - so do I". Redirect her - "He was a handsome man - how did you two meet?". Use Therapeutic Fibbing - it is moral & ethical & it works. "Mom - Dad's on a trip and I really do not know when he will be here". Get a good Neurologist to do a review of all of her Medicagtions - perhaps ther is a counter-indication. Without going to heavy pychotropic drugs, perhaps there is an anti-anxiety Med that can help her. Get respite care for yourself from a home care agnecy that specialzes in dementia care.
God bless & good luck.
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This is the hardest part for me, to try to answer mother when she wants to see her son. My borther had Downs syndrome and died over 7 years ago. She still is taking care of him in her mind. I also initially told her he has passed away, was with dad, was in heaven. Her caretaker told me she goes out of the room and then tells mom that Wayne is sleeping or he is eating and can't come in... That works so much better but it still hurts.
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Oh, oops! I thought JKH was talking about anti-anxiety meds for Mom! Sorry!!! For Caregivers, deep breathing, walking, and venting on forums like this is great! :-)
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From what I have learned, you must join them in their journey, no matter where/when that is. She's living during a time, years ago, when your father was alive. To tell her he has died is like telling someone, for the first time, that their loved one has died. She'll have to live through that grief over and over and over if you tell her that. Instead, "get him on the phone", and get his assurance that he can't come home tonight, would you please stay with mom, and he will probably be home in the morning. Tell her that. She'll only remember how you made her feel, not what you said. I agree with JKH about the 5 minute thing. If you set her mind at ease, maybe you 'll get a bit of a break because, although she doesn't know WHY, she just knows she feels better. Rather than adding to her stress by saying you don't know where he is or how to reach him, try something like "Mom, Dad just called. It's unsafe for him to drive home right now but he wants you to know he's safe where he is. He said for you to stay here with me tonight." Or "Mom, Dad is at work and has a special project to do. I'll leave him a note telling him where we are so he won't worry when he gets back." Work WITH her, not against her. I know it's frustrating. I agree, also, that it might be necessary to get medication to lessen her anxiety, although I truly hate drugs...

Ruth
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You do not say that your mother has dementia, but this is classic dementia behavior. In her mind, she is in a time and place where your father is alive and should be home. She remembers that time and place more clearly than she remembers the time she is actually living in. She probably realizes that something is wrong with her, and naturally wants the comfort of her husband. When you tell her that your father is dead, she probably wonders why you are lying to her about something so important. No matter how many times you tell her the truth, it will not "stick" because of memory problems. You may have to remind yourself of that over and over. Five minutes after you tell her something, she may not remember that you even spoke to her, let alone what you said. And if you do manage on one occasion to convince her that her husband is dead, she will feel all the terrible grief of first hearing that news. And the next day she will probably be back to asking you where he is.
I believe that sometimes there are medications that can lessen the anxiety for situations like this. You might want to talk to your mother's doctor and see if there is something that would help her. Failing that, many of us who are caregivers are on medications to lessen the anxiety for us!
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I am not an expert, but telling her the truth sounds like a good idea. You can gently remind her that he passed away, and give a little detail. Is there something wrong with gently bringing her into reality? If I am wrong here, please, someone tell me.
You may have to remind her a couple of times a day that, "Dad is in Heaven, Mom. He passed away 25 years ago...etc."
Perhaps take her to a family therapist who might have a better approach than this. It would be worth it for your support and direction on how to handle this situation further.
I think it is too stressful for her to keep on BELIEVING there is a chance he will return. Don't you?
Please let us know what happens. Hugs, christina
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