Getting my mom to her doctor appointment

AY

I made my mom a Neurology appointment on 1/13. My dad is worried that if she finds out she'll have a total breakdown. So far she doesn't seem to have gotten any notifications about it, but she likely will get a text and/or email reminder for it. If we can even make it to the appointment day without her finding out and canceling, how do I actually get her to the appointment? She's on-guard around all of us, so if I say we're going for coffee I don't think she'd buy it. It is very possible she'll refuse to get in the car with me, or she will have a total tantrum when we arrive at the doctor's office and not get out of the car, etc. Any suggestions would be appreciated!

Some additional background on our situation:
My mom has been exhibiting clear signs of dementia for over a year now. We've had many conversations with her about seeing a doctor, but they never go anywhere (originally thought she was just in denial, but now realize it is likely anosognosia) She is extremely depressed and anxious, and is increasingly angry and mean towards our entire family. Her go-to move when we try to talk about any of this is to threaten to leave because "she'll be better off without her awful family that's turned against her". She constantly tells us how her intelligent, educated friends don't think anything is wrong with her.

--Rebecca--

I've not studied the best practice for this situation. But I'll share my experiences. Do you or your dad have medical Power of Attorney? If so, go to the doctor's office and change the contact information to your cell phone and your mailing address. This saves our LO from anxiety and altered appointments.

Practice your arrival before hand, so you know how to park and arrive at the doctors office seamlessly. Bring some sort of entertainment for the waiting room, like a magazine or tablet with earbuds and their favorite TV show loaded on it.

With my dad, I told him two hours beforehand that we had a required appointment, in order to continue receiving Medicare. It was routine; no shots or blood work. It would just be questions and answers. (Confirm this would be the case with your appointment.)

At the doctor's office, just say you aren't sure about the details, but the doctor ordered this appointment. If she says this is a neurologist, be vague. "Hmmm. This is the address the doctor gave me."

If she says she doesn't need this appointment, just agree and say medical care is so challenging. Then pivot to discussing doing something fun after the doctor's visit. It should be something simple and easy, because she will feel like she has just taken the SAT test with a doctor's exam. "Let's get a milkshake on the way home. What's your favorite flavor?"

At some point on my doctors visits with my dad, he gets heated. I have to just say,"Here is what's going to happen. [I explain the next thing that's going to happen.] Then I reassure and say it's no big deal. I close with a shrug and "Sorry, this is not optional."

Emily 123

Hi AY,

You say ''Her go-to move when we try to talk about any of this…''

So…don't talk about it. (It's the first rule of Dementia Fight Club)

Early on we all want to make our person understand that there are issues cropping up. But they will start to lose their ability to have insight, and because of the anosognosia and memory gaps they can't recall any of the examples you might use when you voice your concerns. To them it may seem like you're making something up, or making a big deal out of nothing. And that's going to make them mad, and sad, scared, and suspicious. Maybe even a bit depressed (worth mentioning during your visit as meds can help with that).

Because the disease prevents her from understanding that there's an issue, and discussing it creates negative emotions, it's kinder to stop trying to explain. Negative emotions in a PWD tend to create an increasing anxiety loop, and a goal is to keep them in a soothed state of mind if you can.

To that goal, you might tell her something that might not be true, but makes sense to her and doesn't make her worry (we like to sugar coat it here and call it a fiblet). Outwardly she may look and talk like the same person, but your caregiving will need to be flexible and shift towards identifying what has to be done to keep her safe and healthy and avoiding making her feel anxious when possible.

For example, my mom was very attuned to the shift in our dynamic, and I had to try to present everything in a way so that she wouldn't feel patronized. It sounds like you may be running into a bit of that. When we went to look at AL's, it became clear that mom didn't recall any of our first visit, so I went to the rest by myself. But it was inconceivable to her that I'd pick a place for her to live and it would have made her mad… so I talked to her like she'd gone on all the visits and made the choice. And that was in character for her, so she believed it.

Also keep in mind that as the disease progresses she'll lose more of her abilities—what may look like stubborness may be an inability to initiate or follow through with the steps in a multi-step task —she may need cues and assistance.

AY

https://alzconnected.org/discussion/comment/232798#Comment_232798

Thank you for your comment and the suggestions. I will find out if my dad has Power of Attorney, as I do not.

AY

Thank you for your response. I completely agree with not talking about it with her, however, my dad continues to try (with no success, obviously). I do think a shift in dynamics is making everyone uneasy as well.

Emily 123

https://alzconnected.org/discussion/comment/232804#Comment_232804

Oh that's a tough one—Would it help to have him look over the spouse forum here? They're a great bunch of people.

--Rebecca--

If he has POA, take your dad to the neurologist, with POA docs, and have the contact phone number changed. The doctor uses a computer program to call patients before appointments and when called, your mom will cancel it or get upset.

The phase where senior parents are resistant to help from their adult children is very difficult. They will probably ease into receiving support eventually. As day to day life becomes more of a challenge, they will welcome your support.

Do whatever you can to get added as POA.

* * * * *

After years of fighting with my parents, I stood my ground. My mom was bumbling her response after she had an at fault car accident. She did not believe that the other party's lawyers were not our new friends. So I made an ultimatum. I can not assist you in an way, until I am legally allowed to do so. I will no longer lie to doctors or other companies. I will not help with problems, bills or appointments. If you don't trust me with appointments, them I'm not helping at home either. "You can just go to court and get POA later," my dad argued. I added, "If you think so little of me that you would put me through that, and put our family business in permanent public record, then I decline to assist you. If I did that, the court would need to approve every single check I'd need to write for you, every single thing I'd do to help you. I'm just not going to do things that way."

My dad refused to set up POA docs, but went with our family as my mom did. He watched me respectfully help my mom plan out her wishes. We needed to debate some scenarios, but I was always respectful. At the end we reviewed the plan and then added, "and Dad can do his own thing". When he saw the amount of support my mom was going to receive from me, my dad consented tosetting up POA.

After I got POA, I did nothing! They were worried I'd take over their finances. That I'd put them in a home. I did nothing. I slowly stepped in with manager duties, at their direction. I sorted out a late credit card bill. I helped my dad with skin cancer surgery. I gained their trust, as their POA. They legally could take away my POA powers, so I have always been careful and discreet with my assistance. As my Dad moved through paranoia and anger issues, I was especially careful, since he was sure "that woman [me] was stealing his money."

H1235

I would make sure you share all your concerns and observations with the doctor before the appointment. An online healthcare portal works great. If she doesn’t have one set up even better, set it up for her with your email. If she has one set up get her log in information and change it so she doesn’t have access. (I know it seems wrong, but it’s for her own good). Another option is to bring a note in to the office a few days before the appointment. You don’t want to be pointing out all her symptoms in front of her, that would not go well. Rebecca gave you some great ideas. Change the contact information for the neurologist so she doesn’t get notified. Our moms teach us to be honest and being deceitful with them is hard to wrap your head around. You may find this staging tool helpful. Good luck!

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

--Rebecca--

Also, end each doctor's visit with mentioning something she is doing great. Examples: she is maintaining friendships, taking her meds, sleeping through the night, whatever. No one likes hearing about what's not going well. End it on a good note. Then, mention that and that you are proud of her and glad she is your mother.

harshedbuzz

One strategy is telling mom you need to swing by your doctor's office to pick up a prescription (or something) on the way somewhere she wants to go. Once you get there, invite her to go in as it's too cold to wait in car. Ideally, one person takes her and the others meet up in a different car.

Dad's docs had mom's number listed as primary for confirmation purposes.

HB