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

[tiel]

We just went to the first follow-up appointment for my husband who was officially diagnosed with dementia in February of this year. At the first appointment, the dr asked both my husband and me questions about what daily tasks my husband might have difficulty with. More often than not, my husband would answer that he has no difficulty handling medications and paying bills, and performing household tasks.

The actuality on medications is I have set alarms on his phone to remind him to take the medications, and he usually then takes them as required. He doesn't know what the medications are, what issue thay are treating, or who prescribed them. He just knows, for example, to take the little white pill at 7:30. He also doesn't know who his drs are and what their specialties are. Even when we get to medical appointments, he has no idea what dr we are seeing or what the point of the appointment is. He seems to have difficulty with anything related to his health issues, past and present.

Regarding bills, I have them come to me, than send them to him for payment. This is good for him, to keep this skill active as long as possible. I ask him to forward the payment confirmation to me to be sure he actually pays the bills. When the bills were going directly to him, he was often ignoring them, and it was just fortunate I started checking for these payments, before any were missed.

He does fairly well with household tasks, but sometimes doesn't remember how to clean certain things. For example, he has a reminder sign in the laundry room to tell him what he needs to do. And he certainly wouldn't clean anything on his own. I can identify with this lack of initiative, since i'd rather do just about anything than household tasks! But he didn't used to be like this.

At the appointment today, the provider (an assistant to the original dr) did not address a single question to me, to seek confirmation for the answers my husband provided. With the diagnosis of dementia, I would have thought this would be automatic. Should I have intervened and provided clarifying information to his answers? Previously, I was asked to that, but not his time.

Does anyone have any experience with this they'd like to share? We are still at the beginning of this challenging journey, and I just don't know what to do sometimes.

Thank you!

 

[Jodyv]

I am interested in hearing what others say about this. As a nurse (retired, but dealt with babies), I think the provider should address your husband first. I think it's important to give him a sense of autonomy. I do think, though, that you should be able to share the actual facts with the medical team. Unless he answers them with outrageous claims, he would appear to be perfectly capable. It is a bit of a dance...and I'm sorry that you will have to become an expert.
Dementia is hard....

 

[Talent312]

... Should I have intervened and provided clarifying information to his answers?...
Does anyone have any experience with this they'd like to share?

Of course you should have.
I get that you wanted to respect both your husband and the assistant... It was his appointment. But neither he nor the assistant had the perspective that you have. IMO, you should have asked the assistant to step outside the exam room for a word, and explained what was going on. You may want to call the office and ask to speak to the assistant to clarify things.

For years, I was a caretaker for a spouse with a neurological condition that left her unable to adequately describe her complaints and condition. When questions were asked, I did not hesitate to interject the truth of the matter. At the neurological center we used, they said up front that family members were part of the treatment team. So I say that in the future, if you want adequate treatment for your husband, act as such.

 

[zentraveler]

Agree with Talent312. Physician here and it is important (critical really) that his care team have an accurate picture of his capabilities to assess safety and level of care needed. The ability to perform certain ADL's (activities of daily living like dressing one's self, bathing and hygiene, eating, toilet, etc.) also triggers coverage from Medicare (and other insurance like long term care).

You might try gently correcting him at home after a visit and see how he responds. You can also ask him if if he would like your input when he talks to the doctor or the assistant. But even if it does not happen when he is present, his care team will be flying blind if they do not know his actual ability for safety and so they can track his dementia reliably and you can communicate that to his team.

 

[T_R_Oglodyte]

I would expect that if he has been diagnosed with dementia, the physician or PA would know that his answers to questions are not reliable and that it is necessary to verify his responses with a knowledgeable third party. If the physician is actually relying on your husband's responses to track status, I would be looking for another physician.

 

[rapmarks]

I would expect that if he has been diagnosed with dementia, the physician or PA would know that his answers to questions are not reliable and that it is necessary to verify his responses with a knowledgeable third party. If the physician is actually relying on your husband's responses to track status, I would be looking for another physician.

So agree
I remember bringing this up with doctor, and my husband and doctor laughing at me.
My husband was starting dementia at least five years before a doctor was willing to listen to me.
I hope you have looked into infusions for your husband as he must be in early stages if he is doing what you say. I have two neighbors who have been on infusions for four years and it is really slowing progression.
When my husbands long time Florida doctor retired, I couldn’t find another doctor that would ask him a question, or really show concern for him.
You are doing good things I applaud you, you are in for a terrible journey.

 

[rickandcindy23]

You just sit behind your husband slightly, out of view, and shake your head no the entire time the doctor asks the questions.

That's what Rick does at my stepdad's appointments. He sits slightly behind in his chair and nods and shakes his head, while my stepdad is saying how well he's doing at showering, cleaning his house, driving, eating, paying his bills, etc. It's rather comical and not meant to be, but it's necessary.

The doctor asked my stepdad how his feet were doing, and he said they are fine. His toenails are in terrible shape, so Rick had to say that his feet were not fine so we could get him to someone who can cut his nails and prescribe something for toe fungus.

 

[1Kflyerguy]

This is a tough situation to be put in. I agree with Talent312.

I have been the main caregiver / medical POA for my mother for the past 16 years. She has a dementia diagnosis from one of the top neurologists in our area. She is bedbound and lives in a skilled nursing facility. When I attend her medical appointments, I do speak up and make corrections if needed. She sometimes disputes my statements, but I try to ensure the medical staff has the right information.

The challenge for me is whenever she is admitted to a hospital, I can try to be there, but invariably miss speaking with the actual Doctor, as their schedules are unpredictable. My mother will claim all kinds of things, and it seems like the hospital staff makes decisions based on what she says, or at least don't include me in the discussions.

 

[WinniWoman]

I wouldn’t be able to contain myself and would chime in. Another option might be to send a message via your portal to the doctor explaining or even requesting a phone call with him.

 

[Talent312]

... Another option might be to send a message via your portal to the doctor explaining or even requesting a phone call with him.

I concur with using the patient-portal to send messages to her doc or other treatment peep.
But you may want to verify that they monitor & respond those messages.
I used the portal to report significant incidents or changes in my wife's condition.
Her neurologist or a colleague would respond, typically within 72 hours.

 

[davidvel]

What people here are saying is 100% spot on. This is not about respect or dignity in barging in, it is about the respect and dignity of giving him the medical care he needs.
There are a lot of things the doctors can do to manage his condition, and they need accurate information about his status.

You can do it many ways, including walking out with the doctor and giving true picture, messaging in the portal, or correcting him if he doesn't object. Regardless, they need to have a true picture of what is happening.

This is never easy and I wish you strength and compassion.

 

[klpca]

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.

 

[moonstone]

Almost all dementia patients do not know that they are having difficulties and will deny that they are. You need to tell the Dr. what is really going on and what your DH's capabilities and deficiencies are. When diagnosed early enough there are some good medications that can slow the process. My mom was officially diagnosed with vascular dementia in the summer of 2012 but after working in the Alzheimer's floor of a nursing home for over 10 years at that point I recognized dementia symptoms at least a year before that. My dad was almost in denial and it took a lot of convincing that she wasnt just having a 'funny spell' and she would not improve with time. I finally convinced Dad that Mom needed to see a Dr and if he wanted, I would come along.

At the appointment the Dr. started asking Mom various questions about her ability to do things around the house. From his questions I could tell he had limited knowledge (Medical school) on dementia. He seemed to be taking my mom's answers seriously, if dad or I tried to correct the answer mom gave she got upset and said we didnt know what we were talking about. The Dr asked her about preparing meals, mom just said she was a good cook. Then I asked Mom if hubby & I were coming for a roast beef supper what would she need to buy at the grocery store and prepare for the dinner. Mom's answer was to buy wine, I said but what about things to eat and she said well we would probably need to go out to a restaurant. The Dr. was surprised that she didnt say she would need to buy a roast and maybe some vegetables, even after he hinted to her that food as well as wine needed to be purchased. I didnt want to correct or add to any more of moms problems in front of her (she was easily angered) so I scheduled an appointment with just my dad to see the Dr. At the appointment Dad and I told the Dr the truth about what Mom was capable of and what she had been doing (for instance -got lost for over 7hrs driving from the town 8 miles from the cottage back to the cottage, a drive that she had done for over 50 years at that point, unable to plan & cook meals, unable to balance the cheque book, unable to figure out how to turn on the washing machine, not showering....). The Dr. said he would refer mom to a geriatric neurologist and ordered a brain scan while we waited for the appointment so the specialist could see the results.

Mom was put on 2 different drugs (1 pill form, 1 patch) to slow the progress but she was convinced that the new drugs were causing skin tags and dark marks (that she had had for years) so she quit taking them. Dad nor I could not convince her that she needed to take at least her heart medications. I had ordered her meds to be put in time of day and day of week blister packs after I caught mom opening a bottle of dad's prostrate meds when she thought it was hers before her official diagnosis, but then eventually she didnt know what day it was or what time of day so she eventually stopped taking all her meds.

The Alzheimer Society is a great source of info and in our part of Ontario they even have caregivers coffee hours where folks can share problems and get ideas on caring for a loved one at home or even after they have been admitted to long term care. Look up your local office and see what resources they have that you can use.

Good luck, it is a bumpy ride, dont be afraid to ask for help, for your sake or your DH's.


~Diane

 

[geist1223]

When my mother developed Multi-Infract (sp?) I would go to appointments with her. I did sit to the side and behind. The Doctor would look at my Mom but with me in his view for confirmation yes or no.

 

[T_R_Oglodyte]

When my mother developed Multi-Infract (sp?) I would go to appointments with her. I did sit to the side and behind. The Doctor would look at my Mom but with me in his view for confirmation yes or no.

Multi-infarct.

Multi-infarct dementia

Multi-infarct dementia results from a series of small strokes that cause brain damage.

my.clevelandclinic.org

That's what my Dad had. It seemed that the infarcts would occur in swarms. He would be relatively stable for awhile, then there would a sudden decline. Followed by a period of stability at the new level, then another sudden decline. So there was a long step-wise descent.

Then he had a massive decline, resulting in hospitalization. The doctor wouldn't send him back home, so he was discharged to a care facility. After a few weeks at the facility, he had another big decline, which left him completely debilitated and semi-comatose. So we moved him to hospice, and the end came three days later.

 

[rapmarks]

I thought it was bizarre that I had to bring my husband to a psychiatrist but he never spoke to my husband but asked me questions. Maybe I was the one who needed a psychiatrist, to learn to cope.
There is a medical term for it, Alzheimer’s patients are unaware of their dementia. Anosognosia
The neurologist knew just what questions to ask my husband and at one point knew there was no longer anything he could do to help him. At one point they told me to never leave him alone. He previously sent my husband for very extensive testing. At that appointment, they sat us down and said he has lost executive function, you must take care of his medication, you need to handle all finances, etc.

 

[easyrider]

Previously, I was asked to that, but not his time.

It might be that the doctor is establishing a cognitive baseline by asking a person with dementia questions and doesn't need your response. It is all about the patients responses over time. We went through this twice. It isn't easy. Remember to take care of yourself.

Bill

 

[elaine]

When my Mom changed drs., I gave her an index card to give to the nurse with:
“I can…I have trouble with.…”
When I went with her to a dr appt, I spoke with nurse outside the office and gave her accurate info.

 

[jp10558]

Even when people don't have dementia or Alzheimer, I always figured if they wanted me in the room with them (my Dad and now sometimes my Mom), they wanted my input. So far my parents never got mad about my interjecting, and the doctors seemed fine with it. We did all deal with an uncle who was mentally ill and never gave realistic info to the doctors. I don't think they ever listened to us, the uncle probably claimed we were just making things up to attack him. I was glad when he went to an ER because he thought he was having heart issues he also finally must have acted "normally" instead of "at the doctors" because they did a psych eval and he never came home after that. An assisted living home was much better for him.

 

[clifffaith]

I go into all appointments, including those I’d rather not be present for like cystoscopies. For long procedures like Mohs surgeries I go in until the cutting starts and make sure everyone knows he will not remember any aftercare instructions (and they tend to give me a printout anyway). All the doctors are good about addressing Cliff, and then looking to me for confirmation. And I’m not the least bit shy about filling them in about what’s really going on. Health Services here at the Old Folks Home is well aware that if something happens to me to temporarily or permanently remove me from our home, Cliff would struggle mightily with everyday living in spite of him saying “no problem”.

Cliff’s decline has been fairly slow. I see things that no doctor ever would. Like no longer reading voraciously, being unable to learn new things like bottles need to be bagged before putting them in the glass bin, and being unable to remember instructions for two minutes when I have to tell him repeatedly that it is Sunday and we are going downstairs for brunch and if I let my guard down for an instant he has a bowl full of milk and cereal.

 

[T_R_Oglodyte]

Cliff’s decline has been fairly slow. I see things that no doctor ever would. Like no longer reading voraciously, being unable to learn new things like bottles need to be bagged before putting them in the glass bin, and being unable to remember instructions for two minutes when I have to tell him repeatedly that it is Sunday and we are going downstairs for brunch and if I let my guard down for two minutes he has a bowl full of milk and cereal.

That was my dad, as well. He obsessed about the car (long after I had disabled it to be sure that he didn't actually try to drive it), particularly about whether there was gas in it or the doors were locked. There would be bouts of several hours in which about every five minutes he would need to be sure the car had gas and the doors were locked, and had no memory of having already done this a few minutes earlier.

 

[clifffaith]

That was my dad, as well. He obsessed about the car (long after I had disabled it to be sure that he didn't actually try to drive it), particularly about whether there was gas in it or the doors were locked. There would be bouts of several hours in which about every five minutes he would need to be sure the car had gas and the doors were locked, and had no memory of having already done this a few minutes earlier.

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.

 

[T_R_Oglodyte]

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.

My Mom didn't have the heart to cut him off from the car. So, during one of my visits I told her I was going to disable the car, and did so. (I removed the lead wire to the distributor.) She didn't object; afterward I realized that she was glad I did so because she knew something had to be done and by doing it myself she didn't feel responsible for the deed.

 

[Tia]

..............

I have been the main caregiver / medical POA for my mother for the past 16 years. She has a dementia diagnosis from one of the top neurologists in our area. She is bedbound and lives in a skilled nursing facility. When I attend her medical appointments, I do speak up and make corrections if needed. She sometimes disputes my statements, but I try to ensure the medical staff has the right information.

The challenge for me is whenever she is admitted to a hospital, I can try to be there, but invariably miss speaking with the actual Doctor, as their schedules are unpredictable. My mother will claim all kinds of things, and it seems like the hospital staff makes decisions based on what she says, or at least don't include me in the discussions.

When someone with dementia is in an unfamiliar facility, admitted to a hospital, speak to the nurse in charge to get it in the notes/care plan the severity of the dementia and information from patient is often not reliable. Offer other helpful tips the staff can pass along and use to benefit the patient.

tiel the person seeing your spouse must be unfamiliar in dealing with situations such as yours, you'll help everyone by letting them know for next time. Advocate for best outcome.

Last time I was into the dental hygienist learned our dentist is having dementia problems for ~ 6 months. The practice is losing both the hygienist and assistant who have witnessed problems and tried to get something done, but have been unsuccessful. His own doctor, also a friend, and a client has been no help. We are looking for a new practice after 40 years.

 

[rapmarks]

Doctor could be evaluating his communication skills, but doctor needs to know how much Assisstance he needs with adls

I go into all appointments, including those I’d rather not be present for like cystoscopies. For long procedures like Mohs surgeries I go in until the cutting starts and make sure everyone knows he will not remember any aftercare instructions (and they tend to give me a printout anyway). All the doctors are good about addressing Cliff, and then looking to me for confirmation. And I’m not the least bit shy about filling them in about what’s really going on. Health Services here at the Old Folks Home is well aware that if something happens to me to temporarily or permanently remove me from our home, Cliff would struggle mightily with everyday living in spite of him saying “no problem”.

Cliff’s decline has been fairly slow. I see things that no doctor ever would. Like no longer reading voraciously, being unable to learn new things like bottles need to be bagged before putting them in the glass bin, and being unable to remember instructions for two minutes when I have to tell him repeatedly that it is Sunday and we are going downstairs for brunch and if I let my guard down for two minutes he has a bowl full of milk and cereal.

minor problems still
My husband tried to make his morning cereal in the little one ounce cup that held his pills.
Given cliffs age, hopefully you will never see this stage