Question about help for parent in doctor's office

[CTVKath]

I've got a question about my Mom having to be alone in doctor's offices without my Dad. Today's situation involves a mammogram but the scenario is repeating with all doctor's offices. My Mom is mobile but missteps a lot (doesn't necessarily fall - especially if someone is there to keep her balanced). She is completely lucid but gets confused easily and definitely gets lost. She can fill out a form but may skip lines. She will suffer silently and not complain or ask questions. She also gets prescribed Valium which does not help with any of this. Since Covid, nobody is allowed to accompany her. She is a breast cancer survivor and the last 2 mammorgrams have been a nightmare. 2 times ago she got forgotten and the cleaning people found her crying in a room. My Dad had no idea. He was in the car waiting for a call to meet her. The last time, despite requests to call my Dad, they let her go and she got lost and wandered the hospital halls an hour. My Dad had no idea she was done. So today is the first day they didn't let my Dad bring her in and help her fill out the forms. He tells me she's already taken Valium and is loopy. No idea how this one is going to turn out.

Sorry that was so long. My question is - how do you help patients like my Mom who aren't in a wheelchair but need assistance, who aren't mentally diminished but need help with forms and finding their way out of the office? My Dad is essentially her caregiver. She can't cook because she turns on the stove, goes and gets in her recliner and falls asleep and burns up the pot. But she's had mental capacity tests and passes them. Are their code words to allow a caregiver? My Dad tries to tell the office staff that she needs help but they still don't allow him to help. It's not just this office. It's all the doctor's offices.

Thanks for any advice.

[Harriet Vane]

What you are describing IS dementia. This is a squeaky wheel situation. Tell her doctor the incidents you described here without downplaying them. Insist on a buddy for your mom up the chain of command.
 

Fwiw most of the cognitive tests a regular GP does are nearly worthless until the patient is so far down the dementia path it’s obvious to everyone. I’d get a neurologist and a geriatric specialist on board with more thorough testing and assessment.

Edited May 21, 2021 by Harriet Vane
Typos

[Jean in Newcastle]

I would push for him to be able to accompany her as a CAREGIVER, not just as a visiting spouse.  I would be tempted to remind them of how they could be sued for "losing" a patient with dementia.  The caregiver in this situation is necessary for her safety and well-being. 

[Annie G]

With my dad we just kept insisting. Most docs backed down when I didn’t take no. One did not and I stood outside the doc office so when dad left I was right there.  My sister has since taken over and she doesn’t go in with him. She knows he’s not telling the doc accurate answers to the questions but she’s ok with that. (Don’t even get me started) I’d recommend that you just keep insisting. One office gave in when I insisted that we facetime w dad’s phone and mine during the visit. They started the appt without FaceTiming even though they agreed in advance. I called the front desk and discovered they had already started the appt and since I was right outside, I just walked in and they let me go back.  Now they initiate FaceTime when the nurse starts her initial assessment.

This just seems so crazy- having a caretaker there helps the staff, so really it makes no sense that they’re fighting it.  I understand covid protocols but you have to do what’s best for the patient.  I’m so sorry your folks are going through this- it’s hard for both of them for sure. 

[Katy]

"She is confused and cannot go alone."  Rinse and repeat, throwing in the words "dementia" and "medically necessary" when needed.

[Tanaqui]

Many dementia patients, especially in the earlier stages, can successfully get it together enough to pass dementia tests. They can't manage that skill all the time, but they can do it in a short burst when highly motivated.

And they ARE highly motivated, because nobody wants to have dementia! And even mentally well people are fully capable of tricking themselves into thinking they don't need to see a doctor when they do.

[hippymamato3]

Put her in a wheelchair (at the hospital or doctor) and insist. 

 

Edited May 20, 2021 by hippymamato3

[Ottakee]

3 minutes ago, hippymamato3 said:

Put her in a wheelchair (at the hospital or doctor) and insist. 

 

That was my first suggestion....put her in a wheelchair and push her.  Don't ask if you can go along, assume you can😀.    I like the other ideas too.

[Loowit]

My mom just had to start insisting.  My dad cannot hear well, and will not admit it even though he has hearing aids.  So he misses half of what the doctor is saying.

[Faith-manor]

Put her in the wheelchair. She is a fall risk. You do not have to apologize about that. That forces them to provide someone to wheel her around the place if they are unwilling to let him do it. Call the hospital social worker and talk this through thoroughly. They have patient advocates who can help with this stuff. And she has dementia just early stages. Try to get a POA if she would be willing to sign one. Let her know that your dad having a POA (he can carry the paperwork with him) might make it possible for him to be with her. It sounds like she would likely want him with her.

Here is the last one. Get ugly about the money once you have the POA. He can call these offices and let them know that while they may have their "policies" and her insurance information, she is no longer capable of paying bills. Then this, "If you ever leave her wandering around the building for an hour or crying in a room for the afternoon because staff cannot be bothered to make sure she gets back to the waiting room or call me, a lawyer will be hired." Hospital talking bobble heads (administrators) usually only respond to two things. The threat of money lost/litigation, and dirty laundry aired in public. I wish that were not the case. But too many of them run hospitals like the board rooms of Chase Manhattan. 

[CTVKath]

Thank you for all the suggestions. My Mom got through her appointment ok and made it to my Dad in the building lobby by herself. She texted my Dad throughout the appointment to let him know her status. That's the first time she's done that. I like the Facetime idea and will suggest that to my parents. That would ensure my Dad gets the correct information from the medical staff and my Mom doesn't leave something out (ie. forget).

My Mom will not ride in a wheelchair. She absolutely refuses and my Dad doesn't force it. He chooses his battles with her and that's not one he's willing to fight. But if she would ride in a wheelchair, it would change everything. And it would make these appointments a lot easier.

I will talk to my Dad about referencing himself as her "caregiver" and not just her spouse. He needs to push that.

Thank you again.

[BusyMom5]

My grandma is much the same and my mom just goes with her.  She doesn't give them a choice- grandma cannot navigate the Dr offices!  My mom just takes her in.  Having a walker helps 😉 Even during the height of Covid my mom just told them she needed help navigating, was a fall risk, and didn't give accurate info during appointments or remember what the Drs say.  

And this is dementia.  Its early and not terrible,  but its okay to use that word with what you are describing. 

[J-rap]

I've not been to a hospital or clinic yet where I haven't been allowed in as an essential caregiver this past year.  (I've probably been in 20+ facilities!)  No questions asked.  So, I'd encourage your dad to insist on going in with her as her caregiver, or communication assistant, or however he wants to describe himself that clearly states that he is necessary.

[popmom]

Someone needs POA, but do NOT start throwing around the word dementia BEFORE getting POA, otherwise you may have to have someone (you or your dad) made her “conservator” or guardian—which is a more complicated process both in becoming conservator and being conservator. 
 

Regardless, either POA or conservatorship is going to be needed at some point from what you are describing. Don’t put it off if at all possible because she’s probably okay at the moment to sign POA . (I know it’s so hard to talk to parents about these things). 

Edited May 21, 2021 by popmom

[skimomma]

I care for someone with dementia from afar and have learned that I can never trust whatever arrangement I have made with a doctor's office when it comes to appointment instructions.  My situation is a little different because I usually cannot be there and hire a caregiver to handle transportation. The caregiver has always been allowed to go into the facility and office waiting room but not the actual appointment.  Since this is a one-time hire, they would not be useful as an advocate anyway.  So, I need need NEED for them to call me into the appointment.  This is always a note in the chart and for the appointment but it seldom is carried out.  My standard practice now is to note when the office opens in the morning.  I call right at that point and ask them to pull the chart and verify the instructions for a call are there.  Then I inform them that I will call again 15 minutes prior to the appointment so that someone on duty at that time will be informed, which I do.  Even then, I only get about 50% success and find myself calling again 15 minutes after the appointment has begun, often missing something.  Any question that my person is asked is 100% guaranteed to be answered incorrectly so then we have to go over anything I missed AGAIN.  The time they are wasting with me calling up to three times and having to repeat part of the appointment seems worth a little more effort on their end but it must not be since it happens with every single doctor we see.

I just don't understand how this happens.  They KNOW she has dementia.  Why even ask her important health questions?  Most of the questions are actually more appropriate for the nursing staff at her care facility, which has permission to share medical information with her providers.  This has to be common with dementia patients.  Why not just make it standard practice to call in the care facility or POA on file for every appointment.  What are they gaining by asking a dementia patient what their sugar levels have been over the past few weeks or if they are sticking to their diet?  She has NO (accurate) IDEA (she does have lots of inaccurate ideas....).  If they ask again in five minutes, they will get a completely different answer.  How is this useful?  Then if I don't get there in time, they will give her follow up instructions!  She is not going to remember these instructions.  So, I have to call AGAIN to get those. Some of her providers don't have electronic chart systems or it takes some time for them to be updated when often an instruction is to get labs or something right away.....

Sorry.  Rant over.  The answer is that your dad is going to have to get pushy and not assume anything.

[Spryte]

I just walk in with my elderly parent. I think your dad can do the same.

No asking, no reading the signs that say, “patient only,” and hesitating, I just walk in.  If anyone tried to stop me, I’d say I’m her caregiver, she needs help navigating, fall risk, etc.

In my case, I am actually POA, but not all of the doc offices know that or have that info on file.  If they asked, I could produce the paperwork, I suppose, but no one has asked.

You are describing dementia.  And I would highly, highly suggest you get your mom to a neurologist or to an excellent GP.  Go with her, and explain what’s going on like you did here.  It sound like your mom would be in agreement, and she’s not having an easy go of it.  They can check to be sure there’s nothing else going on, might want an MRI, and do a UTI check.  Definitely do the UTI check.  There are some meds that can slow the progression of dementia, too.

[KungFuPanda]

19 hours ago, CTVKath said:

I've got a question about my Mom having to be alone in doctor's offices without my Dad. Today's situation involves a mammogram but the scenario is repeating with all doctor's offices. My Mom is mobile but missteps a lot (doesn't necessarily fall - especially if someone is there to keep her balanced). She is completely lucid but gets confused easily and definitely gets lost. She can fill out a form but may skip lines. She will suffer silently and not complain or ask questions. She also gets prescribed Valium which does not help with any of this. Since Covid, nobody is allowed to accompany her. She is a breast cancer survivor and the last 2 mammorgrams have been a nightmare. 2 times ago she got forgotten and the cleaning people found her crying in a room. My Dad had no idea. He was in the car waiting for a call to meet her. The last time, despite requests to call my Dad, they let her go and she got lost and wandered the hospital halls an hour. My Dad had no idea she was done. So today is the first day they didn't let my Dad bring her in and help her fill out the forms. He tells me she's already taken Valium and is loopy. No idea how this one is going to turn out.

Sorry that was so long. My question is - how do you help patients like my Mom who aren't in a wheelchair but need assistance, who aren't mentally diminished but need help with forms and finding their way out of the office? My Dad is essentially her caregiver. She can't cook because she turns on the stove, goes and gets in her recliner and falls asleep and burns up the pot. But she's had mental capacity tests and passes them. Are their code words to allow a caregiver? My Dad tries to tell the office staff that she needs help but they still don't allow him to help. It's not just this office. It's all the doctor's offices.

Thanks for any advice.

I would argue that your mother IS mentally diminished and the people closest to her will be the last to be able to admit it.  Even if you're not ready to believe it yet yourself, even if you know it's not true and Kung Fu Panda doesn't know what the hell she's talking about, tell all of her care providers that she in in the early stages of dementia and needs a caretaker to escort her.  She is clearly incapable of going this alone.  If it's easier to swallow, go with "she's frail and a fall risk." There are always provisions for people who are mentally and physically incapacitated.  

Edited May 21, 2021 by KungFuPanda

[CTVKath]

Thank y'all so much. My Dad has my Mom's POA and vice versa so I'm starting the conversations of who is next in line and let's take care of that now. She has a neurologist and he tested her for dementia right before Covid hit. Unfortunately she passed with flying colors. Some of her medications cause some of her symptoms. She takes Benadryl at night to sleep and that can cause issues. And she drinks 2 full glasses of wine with dinner which also causes issues. At the moment, I cannot change any of those factors. 

I'll talk to my Dad about being pushy and disregarding signs on doors and going on in with the presumption that he will be allowed in. Also to be more assertive with language that he's her caregiver/she needs help navigating, etc. I've told him that I'm willing to go with her especially for more female oriented type offices like mammograms. With Covid getting under control, it will be easier to get coverage for my kids so that I am free to go with her.

[Farrar]

I also think it's okay for your parents to both conceive of all these tricks as pulling one over to get what they want as opposed to using the appropriate, medically necessary language. As in, if they both need to tell themselves this is how they get the services they'd "like" to have is with these "code words" like caregiver that don't "really" apply to them, then let them do it. Particularly in the case of your mother, let her do it.

[Spryte]

18 minutes ago, CTVKath said:

Thank y'all so much. My Dad has my Mom's POA and vice versa so I'm starting the conversations of who is next in line and let's take care of that now. She has a neurologist and he tested her for dementia right before Covid hit. Unfortunately she passed with flying colors. Some of her medications cause some of her symptoms. She takes Benadryl at night to sleep and that can cause issues. And she drinks 2 full glasses of wine with dinner which also causes issues. At the moment, I cannot change any of those factors. 

I'll talk to my Dad about being pushy and disregarding signs on doors and going on in with the presumption that he will be allowed in. Also to be more assertive with language that he's her caregiver/she needs help navigating, etc. I've told him that I'm willing to go with her especially for more female oriented type offices like mammograms. With Covid getting under control, it will be easier to get coverage for my kids so that I am free to go with her.

It’s unfortunate that the little test they do in the office is so often passed easily, even by people who are clearly having issues. My MIL could still pass, even when unable to live alone and getting lost between the dining room and her apartment at the assisted living facility.  My mom, too.  What got my mom her diagnosis, finally, was her telling her neuro everything in her own words, even though her mind was all there in that moment. That was what got the neuro’s attention.

I would also tell any receptionist and/or doc that objects to her having a caregiver that she has gotten lost in hospitals before, like you told us.  No one wants to see that happen.  So traumatic.

 

 

[kbutton]

2 hours ago, Farrar said:

I also think it's okay for your parents to both conceive of all these tricks as pulling one over to get what they want as opposed to using the appropriate, medically necessary language. As in, if they both need to tell themselves this is how they get the services they'd "like" to have is with these "code words" like caregiver that don't "really" apply to them, then let them do it. Particularly in the case of your mother, let her do it.

This. It's also more palatable for their own way of thinking if this really is a side effect of meds vs. dementia, etc. 

[TechWife]

14 hours ago, popmom said:

Someone needs POA, but do NOT start throwing around the word dementia BEFORE getting POA, otherwise you may have to have someone (you or your dad) made her “conservator” or guardian—which is a more complicated process both in becoming conservator and being conservator. 
 

Regardless, either POA or conservatorship is going to be needed at some point from what you are describing. Don’t put it off if at all possible because she’s probably okay at the moment to sign POA . (I know it’s so hard to talk to parents about these things). 

This - so much this! Timing is everything. Once a doctor says someone has dementia, then paperwork can become a nightmare. Power of Attorney (some states have a POA for financial decisions, and a separate one for medical decisions, some have them as the same document), Advance Directives & wills all need to be done before you get to this point.

Every state has it's own laws surrounding these documents as well as conservator-ship (responsibility for physical assets) and guardianship (responsible for the care of the person) and they vary.

 

[Tanaqui]

Kath, get her off the Benadryl. Nobody her age - especially if they are showing signs of dementia! - should be on routine Benadryl. Talk to your father, have him talk to the doctor and get some other sleep aid. She needs to STOP taking Benadryl.

[BusyMom5]

Just reading she is on Benadryl.  I hate that stuff!  Last time I took it, I told kids and DH when I took it, within 1 hour I was deeply asleep for 2 hours, woke up snd was groggy the rest of the day.  It stays with me at least 24 hours.  

[kiwik]

The rules aren't supposed to override common sense of safety.  Your mother needs someone with her and you and your father just have to quietly insist.  And benadryl and valium sounds like a pretty bad combination .

[Tanaqui]

Benadryl is bad with or without the valium or the wine. It actually *causes* dementia, and is always contraindicated for seniors.

[Ottakee]

4 hours ago, Tanaqui said:

Benadryl is bad with or without the valium or the wine. It actually *causes* dementia, and is always contraindicated for seniors.

Definitely sounds like she needs her doctor or pharmacist to review all of her meds and look for interactions.

[CTVKath]

Thank you all. I wish we could remove the Benadryl from my mother's nightly routine. She takes it in the form of Tylenol PM and was told by an internist doctor 12-15 years ago that it was perfectly safe and she could take it forever. I've told her and my Dad multiple times that it causes dementia and I've given them articles about it. I'm talking to a wall on this issue.

[Harriet Vane]

5 hours ago, CTVKath said:

Thank you all. I wish we could remove the Benadryl from my mother's nightly routine. She takes it in the form of Tylenol PM and was told by an internist doctor 12-15 years ago that it was perfectly safe and she could take it forever. I've told her and my Dad multiple times that it causes dementia and I've given them articles about it. I'm talking to a wall on this issue.

Another reason to get a geriatric doctor on board. So sorry.

[Farrar]

Wow. I had no clue about Benedryl so I'm glad to have read that. Kath, I hope you can get a doctor to convince them to stop.