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?
Is your mother's health otherwise pretty good? (making allowances for her being a 1926 vintage!)
As you say your mother is pretty sharp when not having a crisis, and she herself is seeking explanations for what is happening, then I personally feel that it is wrong not to discuss her condition with her. But at this point, depending on how reliable you think that diagnosis is, I don't think there's any need to drop the D word on her specifically. Ask her what she thinks, ask her about how she's feeling, reassure her that she and you and her doctors will get this figured out. But don't tell her any lies.
And tell that family member he's not too big to go over your knee and get spanked.
Psychiatric medication management on the elderly is often a trial and error procedure.
Call mom's pharmacist and get an explanation of how this drug works.
Did the psychiatrist order any imaging of mom's brain? Do any testing, like the draw a clock test or ask her to remember 3 words, ask her who was President, and if she knew where she was?
With the COPD and diabetes I appreciate that there's a lot going on. But *one* of these professionals needs to get a grip on the complete picture. Do you happen to know, can you find out, if there is a highly thought-of geriatrician in your area?
I feel a bit irresponsible asking questions like this actually - I'm not qualified and shouldn't meddle.
But I have to say that if I were you I'd have steam coming out of my ears by now. ALWAYS BE POLITE 😇 - of course! But it's quite possible to be perfectly polite and still take a cattle prod to your mother's doctors if need be.
Yes, it is usual, customary, and reasonable (UCR) for the psychiatrist to have the patient brought in to be seen when you have questions or a change in medications is required. Especially at first.
People are different. Some do well with the facts, more information, and would normally seek that out. Others are content with less information, and can go through life not knowing. It could be your Mom is repeating the word crazy instead of really thinking she is crazy. Maybe you can gradually introduce another word to replace "crazy". For example: You are not crazy, you just had a "senior moment".
It must be confusing and painful for you to watch your mother decline in this way.
You are a good person to want to protect her.
Did she start any other new medications in the last 4-5 months?
Was she checked for a UTI at her regular physician's? In the elderly, a urinary tract infection does not bring the same symptoms, and a patient can have hallucinations with a UTI. Do not accept a dip stick urinalysis, get a more thorough testing. imo.
It is also common for physicians to think differently about the PRN (as needed) use of a medication, versus the regular dosing to build up the med to a therapeutic dose. Some psychiatrists are more familiar with "off label" uses that could possibly benefit the patient's needs. A lay person may describe this as "thinking outside of the box". These are all questions best asked of the psychiatrist, and a second opinion could help.
You also mention 'movement problems' being amidst your mum's history, and also that she's very sharp when not having 'an episode'.
You've done as you should in taking her to specialist.
You already know that infections can cause hallucinations and delusions and must be ruled out.
These are exacerbated in some underlying conditions.
The Psychiatrist has said -diagnosis is dementia.
There are a whole host of dementias - it's just the umbrella term!
A person who's:
1)exhibiting fluctuating cognition, (one minute/hour/day, they're absolutely 'normal', then other times, confused, fearful, anxious etc); and 2) experiencing hallucinations;
could have Lewy Body Disease and or Parkinson's.
Of the dementias, LBD people are more sensitive to a couple of classes of drugs!!!
So, for a number of reasons, you'll need to clarify which dementia he's suggesting...?
One of the best ways a Dr can help to make a LBD diagnosis, is to talk with the carer, and ask you lots!!
Additional early stage symptoms of Lewy Body presence:
*Loss of balance after standing, and subsequent falls (drops) to floor. Due to what's called Postural Hypotension.
*An intolerance to a crowd where often multiple conversations in play -- it's too much stimulus for them!!!
They often will 'rise to the occasion' whilst company present, but then, be totally exhausted and seem irrational.
*Paranoia.
UTIs, lung infections, plus others; constipation and pain can cause severe stress and hallucinations in LBD.
I hope this helps - please take care, there. I would not mention dementia to your mum at all at this stage. You are not wrong in not wanting her to know - you are protective through your loving.
If it is Lewy Body Disease - there is often not obvious dementia, till very late stages - if at all on occasion.
But there's tantrums and other. Talk about that later.
Best with those appontments!
Suggested doctor would be a Neuropsychologist. They work with Neurologists to get a well rounded diagnosis and develop treatment plans.
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.
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!
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!
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.
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
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.
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
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.
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.
Not everyone feels that way, but every one in my family wants the truth. So far it has helped him cope.