How to cut down on the stress around tests/Dr. appointments?

Jackie_K

Hi everyone - my mom tends to spiral in a big way whenever there is an upcoming doctor's appointment. This results in non-stop phone calls from her for a good 7-10 days beforehand, screaming, threatening to cancel the appointments, calling family members to accuse me of all sorts of things, etc. She is fine once we are there but leading up to it is always a blowout.

I have tried everything from not telling her at all to being overly communicative about it, and the result is always the same (why do I have to do this / why are you doing this to me / you never told me about this / I'm not going / If you won't cancel it, I will).

I have talked to her PCP about cutting down to only the appointments that are absolutely necessary, and many of her specialists have now agreed to do follow-ups by phone to cut down on these cycles too. However, this week she has a PET scan and obviously there are other tests where we can't do anything but just get it done.

How have others dealt with this? I know this is a marathon, not a sprint, but it exhausts me every single time there is something coming up on the calendar. We have a lot of tests coming up and I'm trying to find any way to make this easier on her (and the rest of us).

M1

I would question what tests are necessary and cut to the minimum. PET included-is it for her dementia or something else? The key question for every test is: what are you going to do with the information? If it makes a therapeutic difference in case, then maybe it’s worth it. But more are probably unnecessary than evident at first blush. I think you’re right not to tell her ahead of time, literally until you’re walking in the office door. Show timing will probably kick in then and she may be less likely to make a scene in front of other people. You could always try bribes too, like we’re going for ice cream as soon as we’re through here…

JDancer

Not knowing anything about your mother (age, stage of dementia, type of testing, etc) it's hard to answer this.

For my husband, I don't inform him of anything until the last minute, to avoid anxiety and questions.

And I limit tests and doctor visits.

Jackie_K

Thank you. Mom is 77 and I'm not 100% sure what stage she is, but probably Stage 3/4 is my guess. She was diagnosed last summer and we only recently got in with a neurologist, so he has ordered the PET and an MRI. I was surprised that he ordered them (he said he wanted to confirm the diagnosis), but at this point I can't imagine she has anything but Alzheimer's… it runs in the family and she is exhibiting all of the behaviors and symptoms. Is there a reason this is needed, maybe for insurance or similar?

@M1 , that is helpful. She does have a CT coming up (she had lung cancer a few years ago) and some tests related to an aneurysm they discovered last summer. I'm not sure we need to treat for these but her PCP had a bit of a reaction when I suggested we forego them.

M1

She almost certainly has had brain imaging in the past related to her lung cancer. therefore treatable disease has been ruled out. I therefore don't see how doing the scans (MRI, PET) is going to impact her care and I personally wouldn't do them. Ditto with the CT, or the aneurysm study (probably an ultrasound)-- so what if she has a lung cancer recurrence? Would you treat it? Would you put her through surgery for an aneurysm? I wouldn't. but it's very hard to stop doing tests....You may really have to put your foot down. You can always ask for a palliative care referral-I personally don't think stage 3-4 is too early, especially with the behaviors you're describing. She's making it pretty clear she wants to be left alone and I'd probably go with that.

Not quite in the same category, but I've had a similar issue with a weekend nurse at memory care but who obsesses about my partner's blood pressure. Her systolic (the top number) runs high which is quite common in the elderly, but she's maxed out on meds and we're not going to do anything about it. But i can't get this one nurse to stop checking it! I just bluntly told her yesterday that we weren't going to make any changes and she got pretty upset with me. But its a meaningless ritual that she just can't let go of.

H1235

I would suggest not giving her much notice. If she is angry, frustrated and upset why put her or yourself through weeks of that leading up to the appointment. Go with the option that causes the lest amount of time stressed. It may not eliminate the problem, but you (and her) would only have to deal with it for a few hours. Have you told her pcp about this(other than wanting to reduce the number of appointments) Maybe there is medicine you could give her before you tell her the morning of the appointment.
I know you didn’t ask about staging, but I found this very helpful.

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Good luck

trottingalong

I had this problem just last week. I’m with M1. Look hard at the reason you even need certain tests. My DH has COPD. He hasn’t seen a pulmonologist in a few years so was given a referral. The nearest pulmonologist is 2.5 hours away. He found out he had the appt one week before when they text him for confirmation. He blew a gasket. I had changed the notification to me as primary, but I should have deleted his number. I didn’t even get a text. He ranted and said why does he need to go, he’s not trusting doctors these days, etc. it was exhausting. I made the determination not to take him and cancelled the appt. He was so happy. I’ve decided that so many tests are just unnecessary. Like you, we know what he has. His mom, aunts, two brothers and grandfather all had this. He doesn’t need an MRI or Ct scan to tell us what he already has. The lung test they wanted him to take is difficult for him.and it scared him. Why put him through that. One day at a time.

harshedbuzz

I am sorry you are dealing with this common issue. There are a number of ways to mitigate this behavior, but it sounds like the bigger picture is deciding how you will manage potential treatment going forward and let that inform testing decisions by asking "what am I going to do with this information?" If you wouldn't subject her to grueling treatment, don't bother with the test. This would apply for a recurrence of lung cancer as well as the aneurysm and any routine screens like mammography, colonoscopy, etc.

If you aren't ready to go there, I would keep her out of the appointment loop entirely. She doesn't need to know about an appointment until you pick her up for it. Perhaps you could even piggyback it onto lunch, a hair appointment or shopping. Change her contact information to you and she won't get pre-screenings and phone calls.

If she's this anxious over a range of things, it might be time to consider psychoactive meds for anxiety. This behavior is irritating for you but must be very hard on her given her limited ability to make sense of things.

If she lives alone, she might function better if she moved to AL or with family so she spent less time ruminating. She may do better with a structured routine and distractions of social programming. One advantage to moving dad to MC was access to their affiliated physician who came to him; we could also manage some imaging and lab collection in-house.

Speaking of piggybacking, see if you can coordinate things like imaging or bloodwork into one appointment/day. If you are going to go ahead with the CT scan for the lungs, could a CT scan for the aneurysm be included? DH's cardiologist is following a potential aneurysm as part of his year echo but orders an echo every couple of years as he feels it's less dependent on the talent/technique of the sonographer.

HB

Jackie_K

Thanks everyone, this is really helpful guidance. You are correct, we would not put her through surgery or any invasive treatments so the test results, and therefore the tests, don't really matter. It is tough to wrap my brain around / it is definitely a mindset shift to not follow the doctor's orders, but I definitely want to keep her as comfortable as possible, and the level of stress she experiences is off the charts and it's just not necessary.

The appointment reminders used to kick-off all of this madness, but thankfully I was finally able to route those to me and that has helped for sure. Unfortunately, the family and I are not on the same page about how we handle communication with her (they are still operating under the mindset that she can reason and believe that more vs. less communication is better). So, as with a lot of this, I'm just going to have to keep working on getting everyone on the same page.

We are definitely trying to get her on different meds to help with the anxiety and mood swings. She is already on an antidepressant but it's not helping much (we have worked with her PCP and have tried several at this point) - neuro has referred her to psych but it's a 9 month wait right now, so we're going to have to manage for a bit longer as-is.

I am working on AL. This is another one where the family is not on the same page, but I agree that the structure will help her enormously, and she will be safer there.

Thanks again everyone.

Iris L.

If you are the POA, you don't have to get other family members on the same page. They do not have to live with the consequences of their lack of knowledge, you and your PWD do. My opinion is, do not aim for consensus from unknowledgeable family members. Continue what you are doing, seek suggestions from the members, because they KNOW from their own experience. You won't find better experience or support elsewhere.

Also, be aware that some psychoactive medications will have a paradoxical effect in some older adults. For example, what is meant to be calming can instead be agitating. Read the Beers List for older adults. This is why a geriatric psychiatrist is recommended for access to the appropriate medications for a PWD.

Iris

Jackie_K

@Iris L. - thank you for the tip on the medications!

The POA topic is probably worth a different post… but the main thing I'm struggling with right now is getting everyone on the same page about what they should/should not be talking to her about. I can and am making decisions about her appointments, finances, etc. - but I cannot stop them from talking to her about topics that I know will make her spiral.

I have tried to have this talk about this with them, but I don't think either one of them has truly been able to grasp the concept of her not being able to reason with her anymore, so they still talk to her as though she is their mother from years ago.

On doctor appointments specifically, I have adopted the tactic of not telling her, but she will then ask them and they feel it is the "right thing" to keep her in the loop as much as possible so she doesn't feel like we're trying to trick her or keep secrets. I have tried to explain many times that this isn't about tricking her at all, but rather an attempt to preserve her peace and well-being, but I don't think they are going to "get it" until they experience her anger like I have.

concerned_sister

Jackie, for what it's worth I'll share my strategy. I'm very new to this. In a family meeting in Oct we talked to DB about the struggles we could see he was having. At that time he could see the changes in himself as well. With his wife's blessing, I was asked to step in to assist him, to get his appointments set up, to take him to appointments etc. Trying to be the best I could be in the new role, I came here. I was also checking out online videos. I was sending the things I found useful to my siblings. Maybe the folks in your family might use the same tools with the learning curve. The James L West Center for Dementia had a number of videos by the same presenter that I found helpful.

https://www.youtube.com/watch?v=Ccn_Wo0foeE

I also found the Tam Cummings material helpful. I've attached my spreadsheet format (with some inlaid images). I sent this out blank and asked what behaviors they've observed. I followed it with one I had filled in with my observations. I was hopeful that would set the stage of where we were, and where we could expect we would be going.

Dementia Stages (Tam Cummings).xlsx

Jackie_K

@concerned_sister - THANK YOU. This is SO helpful. I have been reading books and trying to learn as much as I can, but this video was one of the most helpful resources I have encountered. It made me cry.

Also, spreadsheets are my love language, so you've officially made my day. I have shared this with my siblings and hope that it will make a difference. I just want to make things as easy as possible for my mom.

Iris L.

This could be considered psychological or emotional elder abuse of a dependent older adult. Deliberately agitating a dependent older adult is abusive, IMO. Here is info from Home Instead, but it is available elsewhere. You might present this to the family from this aspect.

Emotional or Psychological Abuse

This kind of abuse happens when people speak to or treat elderly people in ways that results in emotional pain or distress for the Senior.

Verbal forms of emotional elder abuse can take the form of:

Intimidation through yelling or threats

Humiliation & ridicule

Habitual blaming or scapegoating

Nonverbal psychological elder abuse include:

Ignoring the Senior

Isolating the Senior from friends or activities

Terrorising or menacing the Senior

Iris

Jackie_K

Thank you Iris! My family members are definitely not abusing her or intending to agitate her at all, they are just not making the connection yet of why (or even that) this is agitating her. They don't have all the knowledge and are making uninformed decisions, sadly.

I struggled at first to understand this as well - on the surface, my mom is still my mom, and most people just think that dementia is about losing your memory. I didn't fully understand until I started to educate myself that it impacts everything: mood, judgment, ability to reason, etc. They believe they are helping with her "memory issues" by reminding her when she asks about things.

Family dynamics also play a role here, as I am sure they do in all families. I have always been the "bossy" one, so when I say "please stop talking to mom about X," no matter what I say afterwards, it interpreted through the lens of "sister is just being bossy again." I wish it wasn't like this, but this is the complicated stuff of families…

Iris L.

What an excellent video, CS! I know it isn't a book, but could you post it on the Books about Alzheimer's Disease thread? People can learn a lot!

Jackie, best wishes to you! Don't let your family stress you out!

Iris

Jackie_K

Thank you @Iris L. !

Not related, but I see how much you help others on this forum and wanted to let you know how much you have helped me too by sharing your wisdom and care. When I'm not posting, I am still reading questions from others to try to glean as much information as I can, and you are always so active on the boards and so generous with your knowledge. Thank you for being so dedicated to helping others through this difficult journey.

Same goes to @M1 and @harshedbuzz. I always look forward to seeing your replies as you have so much to share. Thank you!

Good night everyone. Tomorrow is another day.

concerned_sister

https://alzconnected.org/discussion/comment/206759#Comment_206759

I'm glad you found those items helpful. We share a fondness for spreadsheets. You would 'get it' that I've had fun using my techniques to help db (and wife) straighten out his financial situation and layout their budget.

concerned_sister

I'll look for that book thread later when I'm on my PC.

(Done a little after 10:30 in my time zone.)

Iris L.

To everyone, I try to help others because I was helped so much, by so many people. If you get a chance, please read what I posted about Mimi Steffen, (on the I have Akzheimer's board) one of the first members I met on the boards in 2009. She was an inspiration to us patients. You can Google her name.

Iris

concerned_sister

I was not able to find any thing using  Steffen as my search criteria.

H1235

Jackie_k

I understand the problem with family dynamics. I sometimes I think I am dealing with two people, mom and my brother that can’t reason and think clearly. Dementia is so difficult and heartbreaking. I sometimes wish I could be the one in denial, easier than having it all on my shoulders. To deal with family that make no attempt to educate themselves about dementia is beyond frustrating. I have found if my brother hears it from a doctor he will accept it. I had to insist he attend moms next neurology appointment. Even a dementia workshop didn’t do much good because he said mom was not that far along yet and she can still make her own decisions. Sorry I’m ranting. Maybe you can find some comfort in knowing you are not alone in dealing with a difficult family. I wish you the best of luck.

JDancer

https://alzconnected.org/discussion/comment/206770#Comment_206770

I strongly agree.

Jackie_K

https://alzconnected.org/discussion/comment/206772#Comment_206772

Ha ha ha! Yes, of course I totally get it, @concerned_sister! Whenever there is a spreadsheet opportunity, I will seize it, and I know it's going to be my time to SHINE! LOL! Glad to have found someone who geeks out as much as I do on the process of turning total chaos into a beautiful spreadsheet. 🤣

Jackie_K

@Chug thank you for sharing, and yes, that is a great way to put it - you're not only dealing with the PWD, but other people too, and when those other people are your family, there are extra layers of emotions and complicated dynamics on top of it that only make the situation harder.

There are a lot of days I struggle with them and get angry and pissed that we are not sharing the load equally, but I also try to remind myself that everyone copes with these situations in different ways. Our father died nearly 30 years ago in a car accident, and we were all very young at the time (all teenagers). My entire family processed it and grieved in their own way and on their own timeline, and this often caused a lot of conflict and rifts, and emotional scars that still exist today. I often wish I had been more compassionate and understanding of the way they chose to deal with it and vice versa, as none of our coping mechanisms were the "right" or "wrong" way to deal with it… we were all just trying to survive something pretty sad and horrific.

Don't get me wrong, I am still angry and aggravated, but I am doing my best to remind myself of this!

Good luck to you too and thank you for letting me know that I'm not alone!

mommyandme (m&m)

So I had an MRI this week on my ankle, I wasn’t even all the way in the machine. It’s been close to two decades since I had one, on the same ankle and don’t remember it being a problem for me. This one lasted only about 20 min but the last 10 were difficult for me, keeping my foot completely still. I had ear plugs under the noise canceling head phones but could still hear the loud clunking and humming of the machine. The movements of the machine startled me and hearing the tech’s voice was strange. I was quite anxious and couldn’t wait for it to end and again, I was only half way into the machine with my head and arms out.

When we moved mom here, her new neurologist ordered an MRI. I was looking forward to the results. Mom was settled deeply into stage 5+ by this time. They walked my sweet, little mommy (she was still walking with slight assistance) into the hallway leading to the MRI room. She came out kind of shaking her head and saying annoyingly, “what was that!?” Obviously they got through it but now I wonder how, honestly and she was completely engulfed in the machine because her brain was the study. I can’t help but feel incredibly sorry I put her through that, especially for mostly nothing. It must have been horrible for her! I was so ignorant to the MRI and apparently the dementia experience. If I had to do it over again, never would I put my dementia LO through it.

Sorry Mommy! 💕