Doctor visit today- ever feel like it’s pointless?

Quilting brings calm

I took my Mom to a doctor visit that she asked for today. Dad had one too for a followup on his pneumonia.  Now, mind you, Mom  wanted this doctor visit when Dad had his last one but I couldn’t  get her in. As late as Sunday, she was still desperately wanting this doctor visit due  to various aches and pains, and oh yeah, she was losing her mind. 

I figured out the patient portal stuff and wrote  the doctor a long message about her recent behavior and that I thought she was  getting worse. I also asked for some resources as I felt I was sinking and not up to this task. He wrote back this morning that maybe she needed a neurologist referral, so I wrote back ok let’s do that.  He said he’d give me some resource info. 

Her appointment was at 1pm.  I had given her and dad instructions to eat something in their apartment before hand because they would miss the dining hall lunch hour. The entire 50 minute drive was spent answering the same few questions from my Mom: why am I going to the  doctor, I don’t want to go, it’s a waste of time, I feel like I am losing my  mind,  why is (her spouse) going to the doctor then the wheel would spin and we would start over. 

She cried multiple times in her half hour doctor visit. first she would say she wasn’t in pain, then she would admit to a little pain, and then a lot. So the doctor told her she could have Tylenol( not Aleve) along with the Meloxicam and the Flexeril she already takes.  We went over how many and how often multiple times. Dad didn’t want the Tylenol ordered thru the pharmacy for the nurse to administer, so he promised to help keep track of what she took. He hates that the staff at the ASL manage their prescribed medication even though neither of them can.  The doctor discussed  her mood and her mind, didn’t change any medications and didn’t mention the neurologist referral. 

He ordered lab work for both of them and the lab is there in the building. So we get that done.  We walk out the door and she asked Dad if she has to ask him for the Tylenol and he said yes.  Which is not what the doctor said.  The first 15 minutes of the drive home was like having two children in the car arguing. She didn’t want to have to ask him, what if he was mad and wouldn’t give her any, we were taking all her Freedoms( a exact quote).  Dad in turn was yelling back at her and was quite proud of himself that he was ‘ in charge ‘ of the Tylenol.  He doesn’t have dementia, he is just not a nice person. Then they pouted.  Mom even did the thing where she turned in her seat in the front and looked at him in the back. I was expecting her to stick her tongue out at him.  It was now 3:00 and she told  me she didn’t eat lunch and she had a headache! 

The ‘resource’  I got from the doctor: A two page write up on dementia and a link to alz.Org page.  Sometimes doing to the doctor is a waste of my time. Anyone else think that way? 

Iris L.

General medical care for PWDs is for general medical problems.  You already know more about dementia caregiving than most doctors.  Doctors are for prescribing medications.  For specialized meds you need a specialist.  Check all meds for cognitive side effects.  All older adults are susceptible to polypharmacy.  

As far as resources, you probably have to ask specifically about what type of resource you are interested in.  Is the doctor affiliated with a social worker?

Iris

Quilting brings calm

Iris L. wrote:

General medical care for PWDs is for general medical problems.  You already know more about dementia caregiving than most doctors.  Doctors are for prescribing medications.  For specialized meds you need a specialist.  Check all meds for cognitive side effects.  All older adults are susceptible to polypharmacy.  

As far as resources, you probably have to ask specifically about what type of resource you are interested in.  Is the doctor affiliated with a social worker?

Iris

I don’t think so/ but that was the type of resource I was looking for. I wanted someone to help me determine how long before I had to think about MC or skilled nursing.  Someone to help me navigate things.  I had explicitly mentioned I needed help planning Plan B?  Particularly with dealing with Mom and Dad both.  The doctor is part of outpatient service  of an area hospital.  There should have been a social worker connection somehow, . 

Iris L.

Quilting brings calm wrote:

Iris L. wrote:

.  Someone to help me navigate things.  

In all the years I have been on the boards, it seems that most caregivers have to figure out their own navigation.  They seem to get the best navigation from the other members.  I know I did and still do.  

If you want one person to guide you, you might consult the Care Consultant on the Helpline.  They have been very helpful to me. 

Consult the hospital social worker. 

If desired, you may hire a geriatric care manager.  

IMO, a good  approach is to read the stages, read a lot of threads and post a lot of questions.  Members will give you excellent advice.  I call it excellent because it comes from personal experience from intelligent people.

Best wishes!

Iris

BassetHoundAnn

Several months ago I got my mom in for an evaluation at the geriatric clinic at a major medical center. There were several hour-long calls with social workers, in-person evaluations by doctors to which it was a terrible struggle to get her there, follow-up Zoom appointments. In the end they merely recommended that I get her placed in memory care and connect with Alz.org. Stupid and a waste of time.

Cynbar

I often think doctor appointments are a waste of time. The doctors we have seen have a poor understanding of dementia, try to avoid discussing it, only give me platitudes such as "You have to take care of yourself." You probably need to ask the doctor directly for a referral to a social worker, some large practices do have medical social workers available. You would benefit from a geriatric care manager, I don't believe that requires a doctor referral, google it and see who is available in your area. A therapist (often a social worker with an advanced degree) could also be a big help in navigating how your own life intersects with your parents. But as far as Plan B, I think you know already. Your recent posts have indicated your parents are not functioning too well in their current arrangement, are more needy and more reliant on you. It sounds to me that you believe your mother needs memory care. I know finances and their relationship are concerns to be worked out, but the status quo won't be meeting her needs for much longer. The geriatric care manager would work with you to get it done, based on the options available in your area.

Suzzin

I've those same car rides! Where are we going? Neurologist. Why is she going there? It's for you, dad. Why am I going there? For your brain. Oh. Okay. Where are we going? Rinse and repeat.

Quilting brings calm

Cynbar …. I think you are correct that I needed to specifically request a referral to  or recommendation of a social worker or care manager.  I thought I  worded my ‘cry for help’  to the doctor well enough that he would see that,  obviously not.  The parents go back in 3 months for another follow-up.  So I will do some research between now and then.  My thoughts are that I just need a few discussions with someone to either confirm things or suggest changes and a plan.   

My thoughts right now: 

I don’t think  Plan B is needed to be deployed   at the present moment, but I know it will be coming. As it does for everyone, I’d like an educated guess as to how soon I need to be ready. 6 months 12?  I just  don’t know. Can I get the right person to get Dad on board with whatever that plan is?  I’d also like someone to weed out choices that won’t work for us.  I do much better if I am presented a list that I can work off of rather than ‘ here is the phone book, start calling’. Which is what I had to do in October 2019.  That’s part of what is making me feel like I am sinking and not doing a good job - I don’t feel like I know what the !@$/ I am doing.  My former career was as a systems analyst. I’m supposed to be a planner and I’m currently a pinball in an arcade game. 

One of the reasons that I don’t think Plan B is right now is the ASL director.  She continues to tell me that Mom is fine there.  I spoke to her when I came to get my parents yesterday.  She was in agreement with what I had noticed, but continues to feel they are doing ok there. She did tell me that the other residents still like being around my Mom and are still inviting her to the informal chats, puzzle times and Rummikub games. She is aware of Moms diagnosis and acknowledges it and feels Mom is isolating herself due to anxiety and depression.   Sometime I feel that maybe I see things worse than they are- could be I see everyone  else’s path on this forum and I think I’m farther along than I am. I also think I’m not cut out for the double digit years long path many of the fellow posters here have been walking.

Keep giving me advice, I really appreciate your insights 

M1

QBC, I guess it's good to have the ASL director's perspective, but you have to remember she's not a completely objective observer--she wants to keep her occupancy rates up.  To me the real question would be whether implementing a different plan would help you feel less stressed.   Since you say your stepfather will not go to MC with your mother, would having them in two different places make things better or worse for you?  I know you've said there are financial considerations for that also.

No easy answers....but the practical answers are not going to come from the doctor's office, that's for sure.  This just speaks to the fact that there's still very little that can be done, medically.  The only thing the docs can offer is medication management that might improve her behaviors, and fending off other medical problems/issues.

star26

Life is uncertain. Dementia progression is uncertain. An old person’s future health is uncertain. 

When you take note of every thing your Mom does and says looking for signs she has progressed to a new stage, or when you look for reasons that her current living situation is no longer appropriate, it sounds like you are trying to move her along in order to alleviate some of this uncertainty that is weighing on you.  

All you can do is have a rough plan for what you will do in predicted, possible future scenarios. Identify a few professionals that can help you with applying for Medicaid if needed. Identify several nursing facilities for short or long term care if needed.  Identify several facilities, nursing and non-nursing, that offer both MC and a less restrictive environment for your Dad if it comes to that. Do your research, gather the info, write it down and then set it aside. It may or may not prove helpful depending on how future events unfold. You have already experienced how things usually unfold (out of the blue, extreme, and at the worst possible time) and you have handled that situation very successfully and probably without any pre-planning at all. 

I think you bring them to the doctor too much and it’s feeding your stress level and your Mom’s anxiety. In my book, anxious worry-wart old women with or without dementia should not be brought to the doctor whenever they say they want to go. They also should not accompany others to doctor’s visits. There are ways you can cut way back on what you’re doing and your parents may end up better for it. Or, at least you will be able to save your strength and sanity for when it’s really needed. 

And I totally agree with all Iris's comments and yours on the subject of doctor's visits being pointless. I could go on and on about that!