I don't know if I should make Mom aware that she has dementia (we weren't told what kind was suspected)? Need advice.

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I don't know if I should make Mom aware that she has dementia (we weren't told what kind was suspected)? Need advice.

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I'm a caregiver for my 92 year old Mom. In the past 4-5 months she has been having hallucinations and delusions on occasion. She has had 3 fairly bad "episodes" where she doesn't sleep for 2 days. I've taken her to a geriatric psychiatrist where she diagnosed her as having dementia. She instructed us to give her a very small dose of risperidone when she is having the hallucinations. I don't think it is working at all so they want to double the dose and give it at night, even when she isn't having hallucinations. They want me to bring her in any time I call for advice or have questions. Is this normal? Also, I don't know if I should make Mom aware that she has dementia (we weren't told what kind was suspected)? She is pretty sharp when she's not having an episode and I don't want to upset her and I want her to have the best quality of life she possibly can. Someone in my family called her crazy when she was having an episode so now she is constantly saying she's crazy, even though I reassure her she isn't. I'm worried if she knows she has dementia that she will think that even more. Am I wrong for not wanting her to know?

Alzheimer's & Dementia Anosognosia Care Decisions

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clb2930:
My husband suffers from dementia caused by PD. I belong to a caregivers support group of person's living with dementia, and also consult with many medical professionals. What I have learned is that most persons living with dementia don't know they have dementia. They know they can get confused, forget, and see or hear odd things, but they don't know it is their brain not functioning optimally. They really don't comprehend our reality vs. their reality. It is just their new normal. Read everything you can about dementia, research, and join a support group or two. Use humor and coping strategies to make your life easier during this stressful experience. Takes breaks from caregiving and take care of yourself. HUGS.

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I am writing from the patients point of view. I was diagnosed with Dementia/Prob ALZ based on MRI and Neuropsych exam at the age of 56. I'd lost my job after a 38 yr career. I knew something was wrong and complained of memory problems for the 5 yrs previous to my diagnosis 2 1/2 yrs ago. I personally think each family has to make the decision for themselves as to whether the patient should be told or not. I felt a breath of fresh air when I was given the diagnosis. Finally, I knew there was something really wrong, and no I wasn't crazy. Regrettably, I went through all the testing and received the results on my own. My DW was quite busy keeping a roof over our head and I felt I could do all of this on my own. Looking back, I should of had someone with me because the oral report given to me of the Neuropsych results, differed greatly from the written report I received in the mail. I encourage all facing this problem to always have another adult family member with them. Now, my DW attends each appointment with me and we discuss what the doctor told us following each meeting. I hope this is of some help to all that read Agingcare.

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Another possible cause of sudden dementia symptoms could be bleeding ulcers, or elsewhere in digestive tract. I think any infection or dysfunction adds to the stress on the brain and can make symptoms suddenly worse.

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When my father was still able to understand, I would tell him he wasn’t crazy, his brain was just playing tricks on him and the doctor gave him medicine to take to make it stop doing that to him. He accepted this gratefully each time.

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I wouldn’t tell her. She is living in a different world when those episodes happen. If she doesn’t remember them, I don’t see the need to upset her. It’s like dementia; they advise to go into her world, don’t insist that she always live in yours. Best of luck, hon.

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I'm not sure what you would expect to happen by telling your mother this diagnosis. Is she already being care for by others? If so, then, I'd consider how keeping her safe and protected and made to feel secure might help her feel better. You can discuss it with her doctor, but, I'm not sure how how getting her to understand that she has a terrible condition would help. Also, she'll just forget, so it might be a daily thing of reminding her and making her feel bad day after day.

Based on what you said about the psychiatrist.....I'd inquire if this doctor has experience in treating geriatric patients who have dementia. IMO, that's important. The idea of continually bringing a ninety year old dementia patient into an office for multiple visits, is quite shocking.

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Possibly someone has suggested this, but in addition to Bladder Infections causing confusion in the elderly, so will low levels of Vitamin B12 . Once we get over 50 our bodies may not absorb VB12 from food, etc. I can tell when my mom needs her monthly B12 injection, her confusion levels are much higher. She has her injection and within a couple of days she is much clearer. If you haven't already suggest to her gp to complete blood work, you might ask the GP to check her B12 levels as well as her thyroid. Both are checked through a blood test. My mom is 91 and has Dementia. When her GP diagnosed her, we were referred to a Geriatric Specialist. The Specialist was not keen on giving drugs that may or may not help, but will have side effects. The family was fine with her not taking drugs. Risk with minimal reward. My mom takes synthroid for her thyroid and low dose aspirin daily and once a month VB12 shots.
We all want to do what is best for our loved ones, however, it is concerning that the Dr is increasing her dose, especially for someone in their 90's.

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Rather than getting a shot, my doctor recommended I take a pill once a day. He felt that kept my B-12 stablized. I am 84 and it seems to work for me. In fact it has been like a miracle.

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question to you: what is your goal in telling her she has dementia?
Naming a set of symptoms (x disease) does Not a solution create.
Therefore, will telling your Mother this medical tentative diagnosis ie label..help her life in any regard?
I am doubtful

Rispiradol was developed for treating schizrophenics. Studies on elderly suffering dementia diseases are mixed as to its effectiveness in improving quality of health & life in elderly suffering Dementia. It has many severe side effects including parkinsonism symptoms , tremor, drooling, & many others very distressing problems
In most cases this medication when given to dementia patients causes worsening of the problems it is being taken for
You didn't mention what are other medications your Mother is taking.
There are medications that are known to induce delirium & lead to behavioral disturbances in patients with Alzheimers type dementia.
.eg. steroid and narcotic pain killers
Before prescribing a double dose of a medication that has at a moderate dose not brought any improvement is short sighted and medical folly;
The recommended dose of respiradol in elderly with Alzheimers type dementia is
1gm. Any more causes a great increase in serious side effects
It is appropriate to do a medical workup (blood test, physical exam) & make sure she doesn't have any infections eg bladder infection...as this can also cause increase in the behavior problems that one is taking the drug to treat.
Insomnia is one of the most common side effects of rispiradone
Sleep is 'the great Healer" of life.
Without deep sleep your Mother will deteriorate & pass away rapidly
You might consider making her a big pot of herb tea each day. Herbs are foods & will nourish the body & help to regulate her nervous system.
The recipe below I have seen work very well when people are bone tired yet can't sleep.
And alternate between agitation & apathy
1tspn to a cup. 1oz to a pint. Bring Distilled water to the boil.
Its important to drink & cook only with Distilled water. It is sold at all big markets & pharmacies next to the other waters.
Pour over the herbs. Stir & cover. Leave 10mins to overnight. Overnight is ideal. These herbs are foods & are completely harmless. They will not interfere/interact with the medications she may be taking at all.
Take 1 cup am & pm & more if possible
1 part lavender flower,
1 part Chamomile flowers (lavender is best)
1 part Nettle leaf.
Organic is preferable..And purchased loose. Measure the water & weigh the herb
Keep in glass container in the fridge for up to 3 days
Warm one mug at a time & add 1 spoon raw honey from your local area
This tea smells wonderful, tastes delicious, and brings a strengthening & calming of the nervous system...and deep sleep
Nettle Seeds (etsy.com) A teaspoon of the seeds swallowed twice daily would be a wonderful tonic also.
I recommend both of these foods (tea & nettle seeds) for both you & your Mother. They will benefit both of you in many regards
We are all to die...its the quality of life that is the key to a happy life
Best regards

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Thank you. I find this also helpful. And in the end we will all be somewhere else. It's inevitable. I find that part what makes now matter most.

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Insist that her neurologist's protocol is for your mom to have an M.R.I., which is typically the gold standard for brain functionality.

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My husband and I were in the doctor's office when he was diagnosed with Alzheimer's. He said it was a relief to have a name to put with what had been going on in his head. Now, he knows what the problem is. He has told his other doctors too. Someday he might not remember, but for him it was a blessing to know what was wrong.

Not everyone feels that way, but every one in my family wants the truth. So far it has helped him cope.

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CLB thank God It is You Who's Caring for Your GrandMother because it is very clear from Your Post that You Love Your Gran very much as with out Love It would be impossible to Care for any Person.
I asked a very Senior Nurse that same Question, should I tell my Mother She's has alzheimer's and this is the answer I got. No definitely not. Leave Her be as She is as Your Mother is in Her own little World and She's happy there why upset Her and ruin every thing. Mom died in June 2016, RIP and I never did tell Her. I am so glad I took the Nurses sound advice. I would like to add haylisinations can be caused from taking sleeping tablets as Mother had haylisinations too until I mentioned to The Doctor that it's the sleeping pills hence Mom took no more of them and the haylisinations stopped.

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She can do nothing about it and most likely won't understand. May make her feel like a bad little child. I made the mistake myself, thank God she forgot the next day. But, on looking back at her distress, wish I had never said a thing.

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I agree with Touchmatters. Good luck to you and know you are not alone. My dad has been declining for the last five years. It is sad to see that.

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We just returned from the doctor. She addressed the sleep issue and is adding trazodone. She is still telling us to give the risperidone as needed. After the caregiver took Mom out I stayed behind and asked the doctor what type of dementia she thought Mom had. She said possibly Alzheimer's and/or vascular dementia. I asked about Lewy Body and she said no, she didn't feel that was it. I asked about further diagnostics (bloodwork, scans) and she said that wasn't necessary but to follow up with Mom's primary MD.

I felt better about taking her in after today's visit. Mom actually heard music while we were there so the doctor witnessed it. Mom wasn't quite as alert today as she was the previous visits so maybe it helps the doctor to see that. Mom has no idea why we are there but just goes along with everything, I think because she trusts me. I don't think she realizes anything is going on with her so there is absolutely no point in me telling her why we are there.

This is such a heartbreaking thing to witness. My Mom is my whole world. We are so close and there are days I just don't think I can stand to watch this anymore but I would never abandon her. She told the doctor how I take such good care of her, which really made me feel good.

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Lover stay strong my mom passed on Thanksgiving 9 years ago. My father slow 4 stage 4 cancers over time. I was is everything and he mine. I hear you. To be their for him was the only thing I could do. And I was. You are. Just be good to yourself though this process. We have no clue what the right thing is but our intuition helps us and they do. Even if they aren't all present. I wish you strength, patience and above all hope. Believe in yourself your doing the right thing. Much love to you. Jo

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Teepa Snow - Positive Approach. Teepa is one of - if not the leading expert - on dementia. You can learn about different types of dementia on her website and you can call them for support.

Some MDs - unless they intensely study dementia, may misread signs of what is going on or not have the training/education behind them; I would not necessarily look to an MD to know the settle differences or perhaps even signs. One needs to be aware of medications prescribed to insure they are given for the correct diagnosis.

This isn't a black and white situation or answer from my experience, trainings, and working with elders. Everyone is different.

In responding to your mom, there is no need to get into the science of how the brain changes (dementia). Keep it very simple. You want to reassure her emotionally. Write notes, have signs or signage around to remind her of names or places (bathroom) that she may have known for decades and now is confused.

You could say 'the brain changes with age' . . . 'fuzzy thinking' is very normal. (It certainly is with me and I'm only 67-I forget things very easily and it shocks me.)
Reassure her by addressing your mom's fears with reflective listening:
"I understand that you feel . . . "
"This must feel very scary to you?" and let her talk.

Let her know you and family love her and give her a sense of security that she isn't alone. Gena

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This is so true thank you for adding this.

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My mother was in her late 70s when she was diagnosed. Her personality changed when my controlling stepfather and asshat neighbors started openly using the 'd' word. She raged and became increasingly hostile.

If your mother were my mother, I would not use the word, I see no benefit to her or you. She needs comfort. I would tell her she's beginning to have visions, that she's blessed by God and the angels and that some people just don't understand.

I would ask her what she sees (in transition). I loved it when my grandmother started talking about interacting with my grandfather and her sister. Family members joked, mocked and corrected her - but I believe.

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Thank you that's exactly what I did with my dad. And in my opinion I did the right thing. I eventually told him we cried he apologized for it which killed me, an hour later, he forgot. That relief is why I know not saying it to him was proper. He had a heart of gold. So my grandmother is now 93 I'm the only living relative. I'm 32 and disabled... she told me 8 years ago she shouldn't know if it ever came down to it. For my grandfather and her had it and she blew up one day and said to him I've told you 100xs etc... she has lived with that since. I wouldn't unless the person in sound mind asked me to and I felt that still applied. I'm in a health care situation so I feel if my mind went I wouldn't care to know now even though I said i would so really I trust my husband to use his discretion, and allow him to make that distinction. I think I would know by how I'm treated but we don't know. So it comes down to your own morals and values. Can you live with being that person who did it didn't tell them. What would keep them more stable, in the long run. Moments of need arise and you feel compelled. It will pass you will see something and say to yourself glad now I didn't. Or maybe the opposite. But in most cases knowing is far worse than not. Good luck and much love to all. Jo

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My mom had several strokes so I'm pretty sure it's vascular dementia even tho they didn't tell me either. Why is that? My mom is 91 and would say she was crazy or stupid. I tell her she's not, touch her and gently explain about the strokes and memory loss. She feels better knowing what caused it. She's also had a few hallucinations and I've done a lot of crying, but I listen to her and do my best to make her feel better, and that makes me feel better.

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I think it depends on the person who has the dementia and the family circumstances. My mom was present when the doctor diagnosed probable Alzheimer's. I have promised that I will treat her as the intelligent adult she has always been, so I do occasionally discuss the Alzheimer's, especially when it has an impact on something in her life that needs to be changed or addressed, such as when I had to move her to a retirement home. I'm new to this, too, but it seems reasonable to have to bring your mom in when there is an issue with the medication not working. The financial aspect, unfortunately, but a reality, is that it allows doctors to charge more for Medicare services. The journey down this road is a tough one for the person who has dementia and for the family, but I'm starting to realize that the choices you make have to be the ones that work for you, even if they are not necessarily the way someone else would handle the situation.

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My mom was having a fairly clear day and she looked me in the eye and asked me what was wrong with her. I promised her early on that I would never lie to her. Having said that, I don't think she needs to hear the "D word" because I am afraid it would cause her to lose hope and just give up. I took a deep breath and paused a moment to gather my thoughts and I told her as honestly as I could that she has a memory problem and that it is kind of like if you have a big filing cabinet and you know what is in that cabinet and can go right to the file you want because there are neatly typed labels on each file. I said her brain was like that but somehow the labels have all come off the files and now her brain is having trouble figuring out what files it needs to access and where they are. I told her some files might be lost and never found but that some files would be discovered here and there as we go and maybe we can put labels on those files so her brain can find them again. She listened and said Okay, what do we do about this. I said take your medicine, eat your food with lots of protein, get plenty of rest and do your memory games like your crosswords and your games on your tablet. Try really hard not to isolate yourself from everyone by withdrawing. Fight to stay connected to us. She paused a long time and looked at me and finally said, "Okay, let's do this." I feel I still told her the truth, but I didn't take away her hope. All the things I told her she could do will keep her healthier and happier. They may or may not prolong or slow the downward progress, but they can't hurt. She might not remember the conversation tomorrow, but she did take it in.

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What a wonderful way to explain the situation! I may tell my mom that when she asks me again what happened. I was crying just reading it. Your mom sounds like a wonderful woman as well. Best to you both.

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When my mother wondered whether she was "going crazy" I said "no" and just mentioned that some changes have taken place in her brain that have caused her to become unable to remember things. I added that being "crazy" implies being completely out of touch with reality, which is not the case with her.

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My dad has hallucinations also. I am currently requesting that his neurologist specifically test him for Lewy Body Dementia. Most days he is doing really well, but then he has a decline. In your description, your mother seemed very similar. With LBD, it's important to get the right diagnosis because some medications are ineffective, and may cause more problems.

As as far telling your mom that she has dementia, from all the books that I have read, and from our own experience, it's better to tell them in a loving way that they understand. Like the person that called your mom "crazy", I did something similar. It was back in the beginning of dad's journey, he was having a really bad episode and he took my purse and keys and I needed to leave for work. Our morning caregiver was looking frantically along with me. I blurted out that he was crazy. That was a year ago and although he can't recollect a lot of things, he remembers that! I have grown a lot of patience during this period and wish that I could erase that memory. My dad asks me things about his medication, so that's how I introduced that he has dementia. I watched how he took it, and he was just quiet. I remember the day he told my mom, and he gave her a paper with her name and address in case she ever got lost.

In our house now, it's like 40 First Dates with Adam Sandler. As hard as it is, make the journey as easy as you can for both of you. I laugh more with my dad now, then we ever have in our relationship. I've also cried more in this journey than I can ever remember.

This is the way I approach this now, forgive me if your belief is different. Caregiver's are given a calling by God to care for their parent/spouse/child. When I question things, and even comments from others, I take it to Him to help me do what is in line with what he would have me do.

I wish you the best with your mom. Continue to take care of yourself.

MBuckley

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Thanks everyone. I am taking her to the psychiatrist this morning. I took a urine sample to the lab last week and got a call yesterday that the sample was contaminated so I have to start over. Normally that would be easy but Mom has a suprapubic catheter and they just told me that the only way to get a good sample is to change the catheter and immediately get the sample. That might have been good information to have a year ago when she first got it. They change it monthly and it was just changed the day I took the sample in. I made notes with some of the suggestions made here and will try to discuss them today. I am not going to tell Mom (if it can be avoided). I'm pretty frustrated all the way around. One other thing I found out is that Mom is on warfarin and amitriptyline and I read that warfarin can increase the amitriptyline levels in the blood and that it can cause hallucinations. I don't know if that's what's going on (I'm doubtful) but I'm also going to bring that up.

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Stay strong and remember to take you time. I know the struggle and warfarin is what I said no to. I'm glad I did. The hallucinations ceased. At that point it was useless to treat the stroke. I was prolonging his pain. So I just want to thank you for being present for her and taking on such an endeavor. I appreciate you. Good luck and much love jo

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From my past experience, my mom's doctor had to try different medications and when she finally had to go into the nursing facility, they were constantly having to change her medication until they found what worked. As far as talking to your mom, for me I always did my best to calm her down, but never told her she had Dementia. Does this doctor have her checked for UTI infection? When my mom had bad episodes it was usually from a Urinary Tract Infection and after she had to go to the nursing home I found how bad the infections can cause several episodes and it is very common in people with Dementia. I hate to say it this way, but the episodes will get worse as time goes by. For me I always just tried to redirecting the conversation by starting talking about the episode and sort of leading it into something more positive to try and change her focus from a bad thought to a good memory. That's not always easy to do. As far as your family members calling her crazy, they need to shut up. Instead of taking the easy road where they just want to think of her that way, they should be doing what you are doing and trying to get answers as to what's going on. They need to realize it can happen to any of us as we get older. All I can say is God Bless and stay patient !!

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Yes. Thank you. That is my current position with gram just not in a home. And I wouldn't dare tell her... she makes that loud and clear. But everyone is different and I appreciate you sharing this and what you have done to care for a loved one. Many blessings to you. Much love jo

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My mother has episodic dementia but it gets especially bad when a UTI is brewing. Sadly, this happens every t here weeks or so and we hope a urologist can get to the bottom of it. Please get a home urine testing kit and each week, check to see that she does not have a UTI.
I do not see any gain in telling your mother she has dementia. It can only cause to make her more fearful or anxious. If something cannot help and can cause harm...why do it? Never allow anyone to call her crazy...very disrespectful to your mother.
As far as the drugs...be very cautious because elderly people can become dizzy and more falls occur with some drugs.

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My situation is this so thank you. I can protect her from herself more by staying silent. It would wreck her if she knew. Every situation is different and I believe together we can find the proper way to deal with it. Many blessings and love jo

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Psychiatric meds can increase risk for falls and sometimes cause hallucinations. Just make sure they ruled out a physical cause like UTI. keep in mind of her age and the side effect of medications more vulnerable at that age. If she has been hospitalized that can cause delirium and they rarely get over that.

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No matter what you tell her, she won't likely remember it when she's having a bad spell. The word dementia seems to be terrifying to people her age, probably because of the ways people with it have been handled in the past. If she is scared and you want to comfort her, laughter and comforting statements like "it's ok, we all forget things" etc... might be your best bet. If she needs a reason for her slips maybe you can call it cognitive impairment or maybe just tell her she has an "illness that makes it hard for her to remember". No one gets to call her crazy, you can't allow that. The cruel person in your family who did so needs to be harshly dealt with in a way that will make them afraid to ever do it again. That person needs to know that you will not tolerate them verbally abusing your mother. Calling it verbal abuse will help them realize how serious this is.

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She likely has some idea of that already as it sounds like she has some awareness that things are different than they used to be. Saying it isn’t critical. You could always remind her that she is 92 and may have more forgetfulness as that is common. Her brain has been around a long time... but that she can just keep doing the best she can. It’s unfortunate about someone using the “crazy” word but medical issues can cause symptoms like these even in children ( like with high fevers, etc) so she’s not alone in learning how to deal with new bodily issues.

Overall, she needs assurance of her safety and gentle reminders. My grandma is 98 and can be lucid sometimes but more often lately she just needs reminders, assurance, and lots of love. I tell her she is forgetting some things and that we’re trying to keep her safe which is why she is in assisted living. That seems to work along with lots of reorientation of things that I suspect she’ll be more likely to recall. Take care!

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I go along with the few that say, "not to tell your mom". Get as much information on what is truily going on with her first. See another Dr or 2. There in no point in up setting her if you truily don't have all the facts.

I just tell my mother that she is tried, that she is older and that it is normal for her to be forgetful, or that it may be cause by her medications. Until I know what is really go on, I don't say a word about dementia. What would be the point?

Wishing you well & good luck!

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HI, I'm going through the same thing, and already have so short answer is no. Do what you have been, excuse it, blame it on you. If she is incapable of handling the truth such as my 93 year old gram I just repeat everything, I tried bringing up that things slip our mind and she freaked. If that's your case don't say it to her. My grams meds and my fathers were are as needed and very tiny doses and monitoring while on it. Eventually my dad told me himself but then shortly after forgot he knew. It's really difficult and everyone is different. He went on the lorazepam daily eventually, but by then it didn't much matter he was passing from 4 stage 4 cancers so... back to gram mine goes right back to normal in a half hour of a pill. Happy and carefree. And I can take a breather. Normally, She's a worry wort. Constant complaints about how much everything is different and never remembers the basic stuff. So we just play along as best we can and use patience and understanding above all. Since I stopped fighting it and just going with the flow she's much better. All you can do is help her by giving her repeated instructions and answers, reminders. Somedays I want to hide under a rock, the lorazepam is the only thing that works for her. Lowest dose and then half as a trial run. Then you will know what to expect. It's a long acting drug and even though the meds are said to add confusion it seems to be the opposite for someone in a confused fit. My father also started having dementia symptoms and severe anxiety and this med was the only one not heavy but effective in exactly the right way. So if you can, try to see the dr and switch it but trial run 1st at half so you know what to expect. I'm also going to add her primary care dr should have ruled out the usual suspects for memory loss and confusion if those are her only true symptoms. An overlooked uti can actually cause this. It was the precursor for my gram. She was fine again for 5 more years. Then the real dementia began. That is my very best I have. Good luck. Much love. Stay strong. And don't forget you. ❤Jo

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I think you should tell her. I think it will relieve her to know that there is something actually wrong with her. When she has the hallicinations, you can explain its part of the disease.
I also think you need to seek a second opinion. You need to know what kind of dementia is going on and more constant meds.

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I don't know if I should make Mom aware that she has dementia (we weren't told what kind was suspected)? Need advice.

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