Mom refusing to go to doctor

Anonymousjpl123

My mom is now refusing to go to the doctor on Wednesday. Sigh. She says she doesn’t want an operation. Or a spinal tap. We’ll see what happens. It’s on Wednesday.

Beauchene105

Don't ever tell her about doctor's appointments until the last possible moment. I learned to do this through trial and error. Good luck--it is difficult when you're trying to do what's best, but meet with resistance.

Anonymousjpl123

Yes. I am learning. I tried that and she still resisted last time (for meeting with neurosurgeon).

She truly does not believe there is anything wrong: why am I subjecting her to these “unnecessary tests and hospital visits?”

I will keep trying. I don’t think I can force her. The only great news is her friend who has known her 50 years 💯 agrees and will try to help convince her. I will keep everyone posted.

Beauchene105

The only problem with your friend "convincing" her is that your mom's ability to reason is broken, and sadly, it's not the same as trying to convince a person who can still reason.

I don't know your whole situation, and of course it might be very different from the experience I had with my mom. But for what it's worth, here are some things that might be helpful: Be sure to clue in anyone else involved with her care, so they can help on doctor day. Maybe have that friend make arrangements to come over and assist getting her in the car. It would be great if your mom liked this doctor. My mom really liked her PGP, so I would have him talk with her about things she wouldn't listen to me about.

Wishing you the best.

Anonymousjpl123

Thank you so much @Beauchene105 i am really hoping the MC staff can pull another miracle. They are working on it. Appointment is tomorrow. I feel sick. She is progressing and the more she does the worse this is. I still don’t know if there’s other dementia, if she’s a shunt candidate, etc. but with this procedure we would know so much more!

It’s so heartbreaking if she won’t go I don’t now what I will do. At this point they don’t feel she should to back to assisted living. This really would be her last chance. I know it’s not 💯 that the shunt would help, or she would be a candidate, but it’s a chance.

Her two best friends and the staff are all involved. The appointment is tomorrow. I just hope she’ll go. If not I’ll reschedule and we’ll try again. MC director says we may have to tell her it’s a different procedure. That kills me.

housefinch

As a physician, my other thought is—-a shunt isn’t a quick fix that’s “one and done.” You’re trading 1 problem for another. There are complications you can have with shunts, such as an infection in the shunt, a malfunction of the shunt, etc. I mean anytime over the lifetime of a person who has a VP shunt. These require ER trips, imaging, Neurosurgery consultation to tap the shunt (get fluid to test for infection), or sometimes surgery to revise (fix) the shunt malfunction. And in a patient with dementia, a behavior change may be enough that they need a shunt evaluation. They can’t give a reliable history and you’re faced with whether to look at the shunt for a cause. Or hospitalization for IV antibiotics to treat a shunt infection, to try to prevent having to remove the shunt and put in a new one. I am sorry to sound so negative. I’m saying this because I don’t want you to imagine that a shunt is a complication-free solution. It may be worth even having a video appointment yourself, without your mom involved, to discuss in very clear language with Neurosurgery what the chances are of those complications over time. And how a dementia patient weathers those issues. Maybe @M1 or @Marta will know more in adults. I’m a pediatrician but have cared for many disabled children with shunts, who couldn’t communicate their symptoms

Anonymousjpl123

@housefinch thank you for such a smart and caring response!

By a miracle (and experienced staff), my mom made it to the appointment. It went as smoothly as I could have dreamed: they pulled out 40 cc of fluid no problem and she said there was no pain. Whew.

One thing that surprised me is that I didn’t see them give any before and after tests (they may have done it when she went to the procedure room).

All of that said, she wanted to go out to dinner afterward. I must say, she seemed surprisingly fine, but it was not a miracle. I didn’t notice any changes in her walking or cognition, although my guess is that takes a day or two.

It is precisely what you said: I don’t think it will be a miracle, but I needed to know. It sounds strange, but I am so much more relaxed. I 100 percent agree with you about the shunt. The more I read the more I realize it is a big deal and unless there are major benefits I don’t see the point. At 83, what seems most important is her quality of life. If it will help greatly we do it, if not, we don’t. Oddly, she seemed happiest that the procedure was over and relatively painless.

The hard work is done and I’m so relieved. Even if she/we decide to get surgery, it will be something we go into eyes wide open. I have to be honest for the level of change I saw it wouldn’t be worth it, but time will tell.

Either way I hope my journey helps others trying to untangle dementia and NPH. The biggest thing for me has been memory care. That’s the game changer. It’s not me alone trying to manage all of this and that is literally everything to me. Thank you for asking!!!!!

housefinch

Sending you big hugs. I’m glad everything went so smoothly at the appointment. She wanted to go to dinner afterwards? That’s terrific! You are such a loving, wonderful daughter and working hard to do what you think is best for your mom. I’m sure she knows you love her and want the best life she can have going forward.

Anonymousjpl123

Thank you!!! Sometimes she knows I want what’s best and sometimes she’s skeptical. Her awareness goes in and out. There are moments she seems to know exactly what’s going on, other times not at all. It really fluctuates.

I think she is still trying to make sense of everything. Hospital, move to memory care - it’s a lot. I think she is hoping yesterday is the end of stress for a while. I am too.