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I need to start discussing meds for Mom's dementia. How to provide enough info. Mom has been diagnosed with Mixed Dementia -Alzheimers and Vascular dementia. She experiences delusions (super complex), some hallucinations, wanting to go home, etc. Other times she is her former self, so it's intermittent. Even went almost completely away for like 2 months!
Mom had a stroke 6 yrs ago, right side weakness, so is bed or wheelchair bound. "Lucky" that way because she can't wander. I am her daughter and full-time caregiver. I think I'm managing OK, but so many people tell me I should start talking to doc about medications. Her doc gave me a referral to the psych pool in our network (Kaiser) but none seem to specialize in geriatric or Alz. When I go to the appt, how do I discuss symptoms in front of her when she hasnt acknowledged the disease and always reacts negatively when psychiatrist is mentioned. She imagines talk therapy. Would love to hear your suggestions.

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My stepfather, (whom I was full time and only caregiver) had been diagnosed with Alzheimers. REFUSED to go back to the doctor or the dentist. I kept rescheduling his appts. I got him to his primary care finally, as I had FMLA paper work to fill out. Told him I needed him to show me where the office was, but he would not have "an appointment". Watched him intteract with Dr. and how Dr. Kept looking only at me when he talked, and not smiling. It took some convincing, but I got the Dr. to smile, shake his hand, and look at HIM, even though he was talking to me. Worked like a charm. My Bio Dad, was a different story. Diagnosed with Dementia, his Dr. had NO idea that the missed / late for appointments and not following instructions on eating, meds, vitamin supplements, or not fasting for blood work, or drinking colon cleanser before colonoscopy then LYING about it was a way of life for him. He knew how to tell everyone what they EXPECTED to hear. Not one ounce of truth in him. I had to meet with the Dr. away from "Dad". When I had told Dr. honestly what he was doing, eating, not doing in FRONT of Dad... I learned a lesson. Dad BELIEVED what he was saying. My experience is, I had to look at each of them, as who THEY are, not who I expected them to be. My friend told me, "meet them, where they are". Hope this helps.
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Very real and valuable suggestions. I,m just learning the "ropes". The ability to communicate via email with my wife's neurologist and the very complete and easy to use internet interface, "MyChart", has been most helpful.
big hug
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Doctors SHOULD know the problems we face in this situation but im of the opinion they dont always care. My mom who has alz, gets very upset when her doctor directs questions to me instead of her. I have started just looking at her so she will answer, and not talking unless she looks to me for an answer...or if she answers something wrong. Sometimes i have to add something when she responds to a question .... like he might ask her if she has noticed this or that, and she will say no...i might say, well i have noticed so and so. Its a fine line between making the dr understand how things are going without upsetting or making the parent mad. But its important not to make the parent feel like they arent able to discuss their own situation...or feel ignored. I have also written a letter to her doctor and faxed it to him when there are things i want him to know but dont want to discuss it in front of her.
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All of the above. For a very cozy room, once they know a problem exists (as if an alternate dimension dependung on how severe) you can be very discrete. Use the finger on the opposite side of where she's sitting - she's on your left, move your right finger (up/down, waggle). I crossed my legs and used my foot (up/down, side/side) with one doctor. He thought it was great bc he didn't even have to look at me to possibly give it away, just looked at his clipboard and saw. Once tuned in and trusting you as the truth teller, a good doc gets it just with you squinting your eyes as if "I don't think so/not quite" or an eyebrow raise "no way/that's news to me." Nudge her chair the smallest bit ahead of yours or sit up straight/back while she hopefully leans forward. PS loved the Christmas in April too. So touching. Love to all caregivers.
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This is a topic all gps should have with their staff. I had some concerns about my mom's mental state and called her Dr's office to ask if the dr could suggest to Mom that she take a cognitive test. It has to come from the dr, she will do anything he says. The aid who took the call told me to "have my mom tell the dr she wanted the test!" So I made an appointment to see the dr privately to talk about my concerns.
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VJFriesen6939, I personally don't think Mom is ready for meds, and especially not ready to deal with the trial and error of dosages, combinations, etc. Due to sibling issue, she is pushing for me to get Mom to the appt with psychiatrist re the behaviors. But I do agree with you. If and when though, will try many of the suggestions here about pre-delivery of questions to doc's office.
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My dad's doctor did what he could, but Dad so charmed him that he didn't think Dad's condition was bad, but he smiled and charmed his PCP. I sent a LONG letter to the doc, and made an appointment for only me to talk to him, and really let all the details out. He believed me, asked what I wanted to do (which was keep Dad safe, end his hallucinations and delusions, and keep him from wandering at night. He gave me a script for meds for psychosis, and didn't even charge for the half hour I spent with him. So worthwhile, and Dad never knew. Good luck! You are going through it just like we all have....
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I'm another who loves the Christmas in April.... Awwww Maggie. However, it can be very difficult consultation for the clinician when the pat has dementia? Lots of dementia pats get very skill full at navigating around their illness! My dad was diagnosed with bowel cancer nearly 6 years ago, we thought he'd adopted a denial stance as a coping mechanism, but I genuinely believe most of his failure to take the disease seriously was due to forgetting what he Dr had said and being 90% deaf. I had to have many meetings with the Dr before I was allowed in on the treatment plan. He's now End of Life and I'm a full time love in carer.
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When my Mom and Dad were alive, I would fax a letter to the doc with their name, DOB and how the doc could get in touch with me. It worked great because they had a written record of the information. I was able to share information without doing so in front of either of my parents. When my Dad developed Alzheimers, I also faxed to his docs as my Mom was in so much denial at the beginning. I had a fax machine because of business. However, there are services that charge a small fee per month for the service. You have a fax number so can receive faxes and can fax direct from your computer. AND, so many printers are multi function machines that include a fax. Doctor's offices still have to have fax capabilities. Hope this helps!
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I write my concerns out and hand them to the receptionist to give to he doctor while we wait. Never failed me.
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I do the backseater with my mom. In the small room with 2 chairs, I always push her chair forward so she can be closer to the doctor and I keep the my chair closer to the wall. Occasionally, the doctor will ask me specifically if I've noticed anything unusual or something that might need to be addressed. I always first say to my mom that I don't want to hurt her feelings. Then I answer the doctor. My mother does not acknowledge her moderate to advanced dementia. She believes she only has a little memory issue from being 83. Her short term memory is nearly nonexistent and the long term is going. By the time we leave the doctor's office, she has no memory of the visit. I have also dropped by information for the doctor beforehand as well.
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Giving the doctor a piece of paper with your questions is very good. I do it all of the time when needed. The staff is well aware of the needs, they just need your questions in order to answer your specific ones. If the doctor doesn't or doesn't know how to answer then go see someone else. Doctors are human and don't see everything - remember they are practicing medicine. My wife is able to read and is a vascular dementia patient. Memory issues are many and need to be addressed, BUT why do you have the need to bring up the medications? Do the latest medications really help? The research shows it/they MAY help. I am thinking of making note of whether the medications should be stopped since they don't help every one with dementia.
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Since I live in a different state, I handle ordering her mail order prescriptions and my sister handles the doctor's visits. I know how frustrating it is, because I will get a text from my sister that says " somebody, please shoot me". Outside of the memory care non-medical assisted living facility, we are my Mom's caregivers. You would think that when the patient's chart has DEMENTIA written across it in red, that the nurse wouldn't bother asking the patient important questions. I like the idea of handing the nurse a folder with all of the typical stuff listed. My Mom says she can speak for herself, that she is the adult and we are the kids. She is 80 and my sister and I are 50+.
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Excellent conversation -------- I have the same issue when I try to talk about these issue with the doctorb(especially with my Mom present)!
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you all must have big exam rooms lol there is usually only 2 chairs and they are side by side. my mother sees like a hawk and notices *everything* including nodding, notes etc. she denies any symptoms, says we are full of it, that its normal to forget things at her age, its only been "a couple of months" she's had some forgetfulness (she was diagnosed in 2009), etc When I took her to the urologist she denied ever wetting her pants and contradicted everything I related to the doctor. Fortunately, I had the foresight to call the dr's office the day before and tell them about her Alzheimer's and that she was not a reliable historian so to please listen to the history I give them, not hers. That worked.

But when we were with her discharge team at the rehab center, she got very very upset when they discussed her care and condition like she wasn't even there and talked over her to me and my father. I really hated that they did that. I wanted to ask if they could consult with us privately but they made it clear that they include the patient in consults. I think that's silly because it treats them like a nonentity. How would you like it if you were in a room of people who talked to your spouse or adult child about you but you didn't think anything was wrong with you, yet they were saying you do this or that but you think you don't! then when you protest, hey I don't do that, they simply ignore you and don't believe you. Its awful. If she is ever in rehab again, I'm going to demand they do the discharge consult w/o her there. Its the kind thing to do.
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Thank you all - I do the sit-behind-my-Mom and make faces now with her GP, and I can email with him very comfortably. He's great because he always spends a bit of the appt asking me how I am, am I taking care of myself, etc. I'll try writing - I've already been told I can't make an appt and me come alone. I'll let you all know how that goes!
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Most of the time the doc never did any examination beyond taking mom's bp, so now when I have an issue to discuss with the doctor I make an appointment without my mom to go over my concerns. Sometimes they want to see her, but often I can renew scripts or get advice without the hassle of taking mom out.
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After you've played the back seater raising eyebrows and shaking head games, the doctors remember and look at you alternately while glancing at the patient. They've been through this before!

I too like the Christmas in April tale - it's so sweet.
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Maggie, thank you for sharing that. You made me giggle. Christmas in April. Why not? Bittersweet memory for you, I'm sure.
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GardenArtist, I did the sit behind the patient and did the "yes" or "no" as my parents geriatric doctor always would glance at me whenever she asked my parents questions.

It was always a bit comical on the ride home, I would hear my parents in the back seat discussing their appointment and I would wonder if I was in the same room as them???
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You matter-of-factly discuss them. I did, and mom just sat there smiling. *shrug*

You've reminded me of an incident in the ER. It was April. The doctor was talking to mom about his suggested med change, handed her a scrip, shook her hand, said it was nothing serious and told her to have a good day.

Mom gave him her cutest Southern Belle smile and said, "Merry Christmas!!"

I will never forget the look he gave me. I laugh even now. I just had to share. She's been gone a year plus. I still think of her every single day.
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Garden, great suggestion to sit behind them and and make faces!
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I was an evil person and gave a hand written letter to the nurse that did the height and weight. I could usually slip that to her while she was preparing her chart notes for the doctor. I also did facial expressions. ....but had to be careful because my father could charm anyone into believing anything.....he really could wrap the doctor and nurses around their fingers....But you have to try whatever you can get away with.
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I made an appointment for my sister and I to consult with the geriatric psychiatrist referred by the doctor, to discuss our concerns and review our parents meds before their appointment. He was great! He also made suggestions to alleviate our stress from caregiving. I called the neurologist and spoke to him before their last appointment and brought a note that I discreetly handed to him listing our concerns. The general geriatric doctor sometimes pulls me aside in private or I call him after we leave the appointment.
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Few ways...

Send a letter (many medical practices won't give out e-mail addresses to the doctor beforehand), emphasizing that to respect your mother, these issues will NOT be raised in her presence. However, you want him/her to be aware of them before the appointment, and to raise and address them then.

Or call and speak with his medical assistant or the nurse practitioner.

When you do go to the appointment, try to sit a bit behind your mother so she can't see your facial expressions, such as when you need to shake your head if she responds affirmatively to something that really requires a "no" answer, or when you need to nod "yes" when she says no.
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