can PWD decline rapidly?

*Ollie*

My brother, who is a doctor, feels that incompetent doctors missed something and that is why my mom is declining quickly.  He doesn't live here and hasn't spent much time with my mom over the last several years.  He said that if there's a sudden change, something was missed.  It was my understanding that a PWD could decline slowly or quickly and that there really wasn't one way it manifests.  

She had a UTI so I am going to take her in again today to verify that the antibiotics took care of it.   

What we are seeing with my mom this past month or so is a loss of appetite, trouble swallowing (she has coughing spells even after drinking liquids), and the start of incontinence.  She also most likely had a TIA (sort of like a mini-stroke).  My brother was livid that my mom didn't have a an MRI for this so now I'm arranging one. 

We are doing the best we can but now I'm worried that I should've pushed harder to have her doctor run tests on her and if she continues to decline to the point of death, it will be because of an oversight on my part.   

M1

Ollie:  hard to say definitively without knowing all the details, but:  she has a terminal illness.  what is an MRI going to change?  Can she even lie still long enough?  What difference would it make?  If she had a TIA and she can tolerate it, you would treat her with aspirin and/or other platelet inhibitors.  Diagnostic tests become of less and less importance--what are you going to do with the information?  

I imagine your brother is feeling his own impotence in the face of aging and death and an irreversible illness, so it's easy to want to do something, when in fact there is little to do except comfort her and make sure she's not in pain.  Do not second-guess yourself or beat yourself up.  

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SusanB-dil

Ollie, I agree with the other posts. You are doing great. (And I had to smile at the 'caveman frat party'.)  But also what comes to mind is that your brother has missed some of the 'downslide' and steps backwards. He hasn't been around so much, so to him, it may seem like she declined faster.  You've seen some of these issues for a few weeks or more. Now brother sees for first time and it's a surprise. And yeah, uti's sure don't help.  

Hang in there, she is blessed to have you.

​fesk

Ollie, I didn't see this mentioned. The symptoms - trouble swallowing, coughing after drinking water, loss of appetite, sound like dysphagia which could lead to aspiration. That could lead to aspiration pneumonia. Has her doctor mentioned this? A chest x-ray would diagnose if she aspirated. A swallow study or speech therapist would help you determine if she has dysphagia. I would ask about this along with checking the UTI.

towhee

Any illness can cause a decline in a PWD, even those that most would not consider serious. Checking for aspiration pneumonia is a good idea, my LOs doctor said older people can have pneumonia without showing much in the way of symptoms. A swallow test is a good idea also, and maybe your brother will be reassured that you are on top of things.

 Ollie, we are not superhuman, and most of us are not doctors. Please do not coulda shouda yourself into pieces.

Iris L.

Difficulty swallowing is a later development in dementia.  Has there been weight loss?  If so, you might begin to consider hospice care for "failure to thrive".

Iris L.

harshedbuzz

Ollie-

I am sorry you mom's further decline is complicated by an absent sibling playing armchair quarterback. If nothing, your post is yet another example of a medical professional who just doesn't "get" dementia. Once a preliminary workup is done, there's very little medicine has to offer those with dementia. 

I agree with the others on the futility of an MRI in this situation. You already know the decline exists-- it's in her continued loss of abilities. Your brother doesn't need to subject your mom to further testing so her can pore over data in mom's electronic chart at his convenience. 

You said:
What we are seeing with my mom this past month or so is a loss of appetite, trouble swallowing (she has coughing spells even after drinking liquids), and the start of incontinence. 

Liquids are the first thing people who lose the ability to swallow choke on which seems counter-intuitive. I would ask about a swallow study and a visit from an SLP feeding specialist who can help you around feeding safely asap.

HB

*Ollie*

We got approved for palliative care and I believe they will be come Monday or sometime early next week.    Her doctor also will run a full blood panel to make sure we didn't miss anything. MRI is on the back burner for now although I know if my mom passes before that happens my brother will blame me somehow.   When I said the procedure would be difficult for her he said she can be medicated so do it that way.  Love the comment about my absent brother playing armchair quarterback!  So true.   He's definitely a "my way is THE way" kind of person so I'm trying to honor his input and keep myself centered and trust myself.  

We went to urgent care to follow up on her UTI and while she doesn't have a full blown infection, she hasn't totally kicked it so the doctor prescribed another round of antibiotics.   

Thanks for the tip about her trouble swallowing.  I had no idea about dysphagia  or that this could lead to pneumonia.   I think the palliative care person coming first is a SLP and that must be why.   

I've noticed she does better with thicker, blended foods as opposed to liquidy ones, which is counter-intuitive to me.   Maybe because her throat has to work more when it's thicker?

You are all incredible - please know that!  In the midst of this crazy journey, you are the ones who have helped me the most.  Hearing your stories, getting feedback.  Thank you, thank you and thank you!

Iris L.

A possible way to go is with a brain biopsy after death.  There have been threads before on how to make a brain donation or how to get something like this done.  This data might satisfy your brother's scientific mind.  Personally, I wouldn't do it.

Also, persistent UTI can cause decline.  PWDs decline after an illness and may not return to their prior baseline functionality.

Iris

Vitruvius

If you want to read about a rapid decline, look up a post I made yesterday in the spouse forum entitled "Six Month Update to MCF Placement". My DW's rare dementia continues to progress at a very fast pace. She has been seen by national experts on rare FTD variants from a major university teaching hospital, who agree that I am not imagining the rapidity and there is nothing that could have been done. She had a CT, MRI, and PET scan but that was only to confirm her diagnosis since her Semantic Dementia is considered rare.

 They think she is also having silent seizures which are accelerating the decline, and have her on an anti seizure med but it doesn't seem to help, nor are they even sure that it's the case. And these are experts in dementia, and have consulted other experts in seizures. 

 Dementia is terminal. Period. Nothing and I repeat nothing can stop your mother from declining to the point of death. Anyone who doesn't understand this doesn't understand dementia. 

mommyandme (m&m)

I think for us children it is hard to see our parents decline, especially this way.  Denial was a big one for me. It’s difficult for everyone, of course.  My train of thought is focused on your brother right now.  He’s not around, may not really be educated on dementia.  Let’s face it, most of the practical knowledge is living in and around it daily.  It’s so unfortunate that you feel you might be to blame for any of this, in his eyes. You’re not nor will you be responsible, ever.  You’re a wonderful child for being in the trenches, doing all you can with an impossible situation.  I hope he will come to support you unconditionally sooner than later. You have enough to worry about besides your brother’s ignorant thoughts and comments.  I say ignorant respectfully.  Aren’t we all so ignorant about dementia til we’re not.  

My big brother and I partnered in my moms care although he was long distance after we moved mom here so I could primarily care for her.  For the most part he completely supported me and my decisions.  We were pretty much equals until I moved mom here to my state, so we did see much of the same as far as her decline until her move. I think that helped but I get it. My brother did have concerns and questions but he quickly would say “I know nothing” and defer to me. He is not a doctor so what we dealt with mostly was the practical. There’s a point when medical diagnosis are irrelevant, sooner rather than later.  Whatever is in the past has passed. But again, I get it. I always wanted/needed to know he was ok with how things were going.  Cameras helped a lot because he had access and could better see our daily reality.

I do hope you can come together without blame or guilt. This is all so very hard and I’m sorry. Another set of eyes will be so helpful, glad palliative is on board.