Spouse has dementia, should I answer Dr's questions?

[Patri]

We are in the thick of this now with a family member. Unfortunately we are not “in town” and the “in town” family members want to respect her dignity so they are loathe to interfere. Sadly she can’t do ANY of the IADLs but she sounds so coherent at the appointments that with her neurologist’s blessing, she is living alone. It requires a substantial amount of help from the in town family members. It is unsafe for her and unsustainable for them.

Someone has to say the truth at the doctor’s appointment, otherwise the patient will not receive the appropriate care. Do what you have to do.

Then the in town people are getting what they deserve. Sad they are so timid. Hope the relative stays safe.

 

[fer829]

My experience with my wife is similar. She is aware that she has short term memory loss and we have been referred to an exceptional doctor (actually an APN which includes a doctoral degree.) I always go in with her and when she questions my wife I can make a face or shake my head if the answer isn't correct. I can then be asked about it if further information is desired.
Something that might be suggested to the original poster concerns medications. Label all bottles, both Rx and vitamins, with when each is to be taken. She is then capable of filling the three one-day sections of the weekly container.
She is also somewhat careless about finances using Quicken--her real strength in the past. However, I have always checked all financial accounts weekly ever since there were reports of hacking to make sure of accuracy and payments.
I feel that it is very rewarding to be able to help her after all she did during my career.

 

[isisdave]

Meanwhile, regarding the bills: automate the payment of everything you can. I don't really follow the path you're using to receive, pay, and track them, but you need to be able to monitor them, either by logging into his accounts, or getting added as an authorized accesser, including getting YOUR phone number added so you can tell the logon screen to send the code to you. This may not be strictly necessary today, but someday it may be, and then it will be very hard to set up.

It helps if you can coordinate the due dates so that you only have to think about this one week a month. We get our SS on the second Wednesday, so I have set most of our bills for autopay on the 16th, for example,

 

[T_R_Oglodyte]

Something that might be suggested to the original poster concerns medications. Label all bottles, both Rx and vitamins, with when each is to be taken. She is then capable of filling the three one-day sections of the weekly container.

IMHO - that is dangerous. You can't rely on the dementia patient to remember whether or not they took their medication. My dad would insist that he had not taken his medications that day, even though I was there and making sure that he had taken as required and that he wasn't going back and retaking them.

She might be capable now, but at some point that ability is likely to go away, and no one will know until a mistake is made and discovered. And with meds, making a mistake can be quite serious.

 

[moonstone]

IMHO - that is dangerous. You can't rely on the dementia patient to remember whether or not they took their medication. My dad would insist that he had not taken his medications that day, even though I was there and making sure that he had taken as required and that he wasn't going back and retaking them.

She might be capable now, but at some point that ability is likely to go away, and no one will know until a mistake is made and discovered. And with meds, making a mistake can be quite serious.

Totally agree!! After I had the drugstore package up all of both of their prescriptions individually blister packed portioned in cards that had their name, time of day and days of the week clearly marked, Mom would sometimes forget to take a mealtime set of pills (say breakfast) then the next day she would take those not wanting to waste them. A few hours later she might see that days breakfast pills were still in the blister pack so take them again forgetting she already took the previous mornings pills that day. Other days when I pointed out the days' pills were still there she would argue about what day it was.

I think most drug stores will package up prescriptions in dose cards at no, or a very small, charge but somebody needs to oversee the dispensing of them.


~Diane

 

[sue1947]

getting added as an authorized accesser, including getting YOUR phone number added so you can tell the logon screen to send the code to you.

This deserves to be emphasized. Take care of this earlier rather than later when memory issues aren't as severe.
1. Make sure the phone number used for multi factor authentication is one you have access to and also, not a land line. The latter isn't as much of an issue if it's a spouse you are caring for, but for a parent or other, getting that number changed involved the company asking my mother her address, social security number and phone number; none of which she could remember after her stroke.
2. Authorized access is good, but co-owner is better so you can make decisions to sell etc as needed.
3. A power of attorney is also important, but some companies will only use their form. Make sure you have that form for each company. For one mutual fund company, they wouldn't change the phone number to access her account or accept the power of attorney, but I could sell her shares. Which is what I did and moved that money elsewhere.

It's a journey. Remember that you are not alone. This community has been great in providing advice and real world experience.

 

[clifffaith]

I asked Health Services to fill out a form to have DMV call him in for a chat. They renewed his license on his birthday in April. I’d hoped they’d actually talk to him since he doesn’t know his address or phone number, but they just took their $64 fee and issued a new license good for five years.

Cliff had his six month checkup today. Couldn’t tell our doctor his address, got the month right but thought it was mid June and insisted he is still an excellent driver with good reflexes. Asking “where are we going?” four times on the ten minute drive to Trader Joe’s doesn’t seem to bother him. She purposely asked me in front of him did I think she should contact the DMV. That way I could say no and both of us have plausible deniability when/if the letter from the DMV comes. Google says 4-6 weeks for CA DMV to respond to request to examine a diver. It’s been six weeks since his cognitive test, but it is possible Health Services had to get input from the Director before proceeding. If we get nothing by the 4th of July I’ll follow up.

 

[T_R_Oglodyte]

Totally agree!! After I had the drugstore package up all of both of their prescriptions individually blister packed portioned in cards that had their name, time of day and days of the week clearly marked, Mom would sometimes forget to take a mealtime set of pills (say breakfast) then the next day she would take those not wanting to waste them. A few hours later she might see that days breakfast pills were still in the blister pack so take them again forgetting she already took the previous mornings pills that day. Other days when I pointed out the days' pills were still there she would argue about what day it was.

I think most drug stores will package up prescriptions in dose cards at no, or a very small, charge but somebody needs to oversee the dispensing of them.


~Diane

More than that, you can't rely on the dementia patient even remembering that they need to take medications.

In the last year or two of his life, my Dad thought he was still in his late 30s. He wasn't taking meds then, so left on his own he would often not think about them. Only when prompted, did he take his meds, and then he had no idea what they were for. Sometimes he would complain they were being forced on him. I could easily see where that could lead to him thinking that people were poisoning him or using drugs to control him. But fortunately he never went down that path.

 

[rickandcindy23]

My stepdad has a piece of paper on his counter that reads like this:

2026-1934= 92

He was wondering how old he is at some point, I guess? His birth year is 1934. He won't be 92 until September.

 

[T_R_Oglodyte]

Going a bit sideways from the original topic of communicating with the patients doctor about what is really going on ....

I was involved in the dementia/Alzheimers pathway twice, first with my dad and then tracking about ten years later with my father-in-law. The biggest bit of advice I ever received came from my brother, when he passed on to me something that he gleaned from NY Times columnist Russell Baker's "Growing Up" memoir. Baker discusses being with his mother in her advanced dementia, and him deciding to be with her where she was mentally. He's asking her to describe where she is and what's going on, and in her mind he's a little boy with her on a family outing to Coney Island. She talks to him about things going on. Baker decides to just be with her there, and not try to bring her to "reality".

So I did the same with my Dad and FIL. When I saw them I would ask a starter question, such as tell me about when you were in high school. That would get them started, and with both of them they had pretty good recall of that time of their life. Then I would have them continue narrating their life, like "what did you do after high school?" And I would just keep it going until the memory breakup occurred.

***********

With my father, there was a three-year period, starting a few years before I was born, when memory breakup occurred. Some things were clear, but other significant elements were gone. I'm the fourth of four, but memory of the birth of my nearest sister (#3) was gone, even though that was within the period. About the time I was born, the memory loss was nearly complete, though he did remember when we moved to Minneapolis when I was a one-year old. But that was good, and we could carry on a useful conversation, that he seemed to enjoy.

Since my Dad stuck at about age 38-40, he saw me as some adult male who was not that much older than him. It was clear I was closely to my Mom (his wife), he usually figured that I was a brother of my Mom's that he had never met. I'm meeting him where he is, so I don't bother with trying to correct that; I just go with it on that basis. that led to some very entertaining sessions, which are among my favorite memories of him.

*********

With my FIL, the breakup period wasn't as distinct. But my FIL had kept a scrapbook of his ETO service during WWII. For the last part of the war, my FIL served as Quartermaster on Patton's command staff, so he was located whereever Patton was at the time. He was all over western Europe, and kept records and momentos from all over. I shared with my MIL my approach, so one time she gave me the scrapbook to review with him. Again, that led to some very enjoyable times. It also gave me an opportunity to ask him about his experiences in the war.

Later I shared some of things he told me with my wife and others in her family, including my MIL. I learned then that he had told me more about his wartime experiences than he had told anyone else in the family.

 

[T_R_Oglodyte]

One final thought - with both my Dad and my FIL there were occasional brief moments of lucidity. I learned to appreciate those and rejoice when they happened.

The most touching happened with my FIL. My MIL insisted on taking care of him for far too long, until it finally became impossible for her to continue, and he was transferred to the Memory Care unit. FIL was pretty far down the path at that point. It became clear that taking care of FIL had become MIL's total focus. When that burden was lifted, she no longer had to hold herself together. About three weeks later she was hospitalized to deal with a circulatory issues. It started out pretty straightforward; she was expected to be discharged in a couple of days. But she didn't respond to treatment, and continued to slide. Ten days later she was dead.

We had a small family ceremony at the columbarium in which we were placing her ashes, located at the cemetery where several generations of family are interred. FIL was there, and, typical for his condition, his body was there but his mind wasn't. As were shutting the door on the niche, he suddenly turned and approached the niche, put his index finger on the door and looked at my BIL (who was leading the ceremony). Then he said, "Is this where she's going to be?" BIL said, "Yes - this is it." He nodded and said, "That's good." Thirty seconds later he was back in his dementia state.

I remember that as one of the biggest blessing moments of my life. I just know that God gave him, and us, that minute of lucidity. In which FIL immediately knew without asking what was happening, and let us know that it was good.

 

[Talent312]

I sometimes don't remember to take my meds, so I set multiple reminders with Alexa.
(1) "It's time now to take..."
(2) - 30 minutes later - "Doofus, did you take..."
(3) - 2 hours later - "Airhead, check your pill case..."