Should I bother with a New MRI?

riajean

So...........it's almost 4 years since we had an MRI of my husband's brain.  Four years earlier it was "amnestic MCI"; then 4 years ago, "significant shrinkage" and the horrible "you don't have to come back"; to now, almost 4 more years.  He's in MC, doing OK since late August, but with "incidents" of acting out, hurting others, falling, not sleeping, just walking till early morning hours and meds added and increased - Zoloft and Serotonin.  He's more than obviously in stage 6 but do we just let things go now and not know where his brain is at?  Do we just leave everything alone for him to decline and die?  Should we be doing anything? 

Thoughts?  Comments?

Ed1937

Just a thought. Would there be an upside, regardless of what it shows, to getting another MRI? It would be my guess that there would not be anything significant to learn.

riajean

Well, other than how much more shrinkage happened and where a professional thought he might be - in other words - how much longer is he going to have to decline/suffer, right?

dayn2nite2

There is nothing to be done.  It can't be cured or controlled.  Why put him through that?  You won't be able to tell from an MRI how long he'll live.

His time to death depends on his physical shape and his medical history and frankly, if he's only in stage 6 you may have quite a while until death unless he has a heart attack or a stroke.

Jeff86

I don’t see the rationale for further testing.  There’ll be no therapeutic response to the findings, whatever they may be.  An MRI will not have predictive value for the pace of future progression.  

You have ample insight into his progression.  In you shoes, I wouldn’t authorize further testing. It’s been four years since my DW had her last MRI.  I would do anything—anything—that would ease my wife’s journey.  Putting her through this diagnostic test would only frighten her, and would not benefit her.

Quilting brings calm

I wouldn’t.  The MRI has nothing to do with what stage or what the life expectancy will be.  The stages are determined by cognitive and physical  function, and behavior.  The average duration of each stage varies by type of dementia… but every person is different.  You will find caregivers here whose loved ones went  very quickly and others who are on year 15. 

The link below will give you info about stages and expected average duration.  

 https://www.dementiacarecentral.com/aboutdementia/facts/stages/

riajean

Well, my intentions are CERTAINLY NOT to harm my husband or put him into undue stress, but it seems to me knowing something is better than knowing nothing.  Not that anything will change.  Not that anything can be controlled, but just to "know".    Has nothing to do with timing his impending death, which sounds cruel and cold.  Has everything to do with knowing what's going on inside his poor body. 

Like any update, to any disease.  My goodness.  Nevermind.

Gig Harbor

He would have to be sedated in order to lie still throughout the exam. You know he is worse and that his brain has continued to shrink. I almost think a radiologist wouldn’t want to risk the sedation for a result that won’t change anything for him.

CStrope

riajean, I get where you're coming from so don't feel bad.  My DH is only 18 months into diagnosis, and sometimes I wish he was having another round of cognitive tests or another MRI or PET.  I know it won't change things, I know it won't improve things.  But I also know that the unknown is very hard for me.  I am a very analytical person.  I wish I had some way of measuring how much his brain has changed in the past 18 months.  Oh I know I can write down things he can no longer do, etc., but I want numbers of pictures or something that I can quantify.  

But, I get it.  All the tests and scans aren't going to change a thing.  The end will still come when it's going to come, and nothing is going to change that.  It doesn't change me wishing I had "markers" to watch how this horrible nightmare will play out.

harshedbuzz

Riajean-

I do understand the compelling needs to "do something" and to have as much information as possible, but at this point an MRI isn't going to bring clarity to the "where are we?" and "how much longer?" questions. 

An MRI at this point would not bring much to the party now. It's a fairly blunt instrument for documenting damage that is occurring at a cellular level and depending on specific areas and structures may not be predictive of where he is in the course of the disease. 

You and his caregivers probably have the best sense of where he is and how he is doing in terms of progression. There is no "Hail Mary" treatment for late stages- there's not much more that can be done aside from keeping him safe and as content as possible. 

There is no crystal ball which can predict with accuracy how much longer a PWD has. Each PWD seems to have their own timeline. My aunt lived 15 years with dementia with the final 4 in stage 7- she stopped eating/drinking several times in the period leading us to think her time had come but then would rebound to her baseline. My own dad died less than 2 years post diagnosis from complications of aspiration pneumonia hours after a swallow evaluation during which he flirted with the SLP and told me all about a visit he's had earlier in the day with my sister who died in 1994. 

HB

riajean

Thanks.  Not really searching for "when will he die", just more analytical I guess.  I'm well aware nothing matters at this point.  Facts and figures are easier to relay to family and friends who, well meaning, ask how he is.  All I can say is "he's content".  No one relates to that.  No one understands that.  No one really understands the disease when they live far away, don't visit, don't call, don't seem to care.  So, when I decide to communicate with "the family", it's easier if there are documents.

What's going to happen is what's going to happen when it's supposed to happen.  I pray to God though it's not another 15 years, which is highly doubted because seriously, I'm not strong enough to live in limbo for that long after the 7.5 years already "in" this thing.  Whether he's living  with me or not, he's still my husband.  I'm still married.  My life still involves him and yet people are telling me to "begin my new life" without him.  How the hell is that possible?

dayn2nite2

riajean wrote:

Well, my intentions are CERTAINLY NOT to harm my husband or put him into undue stress, but it seems to me knowing something is better than knowing nothing.  Not that anything will change.  Not that anything can be controlled, but just to "know".    Has nothing to do with timing his impending death, which sounds cruel and cold.  Has everything to do with knowing what's going on inside his poor body. 

Like any update, to any disease.  My goodness.  Nevermind.

I don't know where this response came from, but you asked and we answered and nobody implied anything in their responses.

More testing would not be for him but for you, and if he is "content" right now, then that is the best possible situation for him and you are doing right by him.

toolbeltexpert

riajean wrote:

Raijean I don't have any words that will comfort you in your trials. You having to communicate to other family is very difficult when they are not day to day I know! I haven't  even gotten my DW a diagnosis never mind a starting point, but I know something is happening and where is she now is always on my mind. Just know I pray for ya.

Quilting brings calm

== Whether he's living  with me or not, he's still my husband.  I'm still married.  My life still involves him and yet people are telling me to "begin my new life" without him.  How the hell is that possible?==

That’s a totally understandable and normal  thought.  Everyone’s decision is how to live their life with a loved one with dementia is personal and unique.  You get to decide yours.  If I remember correctly, your spouse is in an MC.  Safe and cared for daily. If you have loved ones or friends that you wish you could be with more, then do so.  If you have hobbies or travel  you’d like to pursue, then do so.  You aren’t being unfair to him by doing things that he can no longer do or enjoy. 

If your visits upset or agitate him, then reduce the number or length of them.  Again, you aren’t being unfair  to him to do so.  You did not cause his illness and nothing you do is going to hasten or slow the progression. 

These are small things that you can do that will give you daily enjoyment, but that will not interfere with your definition of what being married means. 

Beachfan

riajean wrote:

  Whether he's living  with me or not, he's still my husband.  I'm still married.  My life still involves him and yet people are telling me to "begin my new life" without him.  How the hell is that possible?

Hi, riajean,

I think you and I are somewhat in the same boat with regard to our DH’s.  My DH is in a MCF since Nov. 12; about 38 miles away- - 1 hour, each way, on a good day.  I visit with him once a week, for about 1 1/2 to 2 hours.  The route is mountainous, with unpredictable weather so I plan well in advance and don’t travel after dark.  The difference between us is that my DH has no idea where he is or who I am.  It’s hard to “visit” with him, but easier to come and go- - sad, but it brings a level of comfort.  

I feel as though I have “begun my new life without him”, but it consists of doing things for myself on my own time.  Nothing exciting or exotic- - just a return to some simple pleasures that I’ve missed over the last many years.  I can enjoy, and cater to, the grandkids; I can browse the library for hours, soak in the tub, contact old friends and arrange visits.  I’ve told a number of people I feel like I’m on vacation.  I’m sad, but I’m happy.  Please know I am thinking of you and hoping you are settling into your new routine- - as confusing as it may be.  Everyone’s journey is different; sadly they all lead to the same ending.  Stay strong!   

riajean

Beachfan, yes, our paths sound similar.  I visit my husband weekly too (still work full time) but have taken a few breaks with longer spacing in between in January - partly due to Covid and shutting down the MC and partly due to snowstorms and rough travel.  75 miles away and he does know me, thankfully.  Visits are only 20 minutes but they tend to give me more time knowing I'm not coming from next door.  Not much to do together, music, just being with him.

I'm OK on my own then I'm not; sad, depressed knowing my husband isn't coming home because I MADE that decision.  So, now the house is mine and while it's fine, his presence is still here because it's with me.  I'm hesitant to change too many things but have changed a few - just for something different - daring myself to be independent.  Imagine!!

Thank you for your prayers (everyone) your words of wisdom.  If it wasn't winter, it might be easier?  But then again, used to doing everything with HIM; my entire life; no grandkids of mine - only his that are grown and 9 hours away.  No close by friends.  Trying to think of ways to get out there but don't feel like dumping my sad story on somebody new.  It's only been 4 months, feels like an eternity.  Just miss him. 

NW_Mike

riajean: as I read down through the replies and your responses, something you said resonated with me and that is what to tell the friends and relatives who ask how your LO is but never bother to visit. My DW has women friends who go back to high school but they never come to see her (she is still here at home) or call. Even her sister, who lives 10 minutes away, came twice in the past year. I don't think it's that they don't care, I just think they don't know how to talk to her. Well, Hell, I don't either sometimes! Anyway, my go-to answer anymore is that "she is doing well, all things considered", and just drop it there.

As for the MRI, my wife's last one was over 4 years ago. I have no idea how stressful that would be for your DH, but in our case the MRI was very stressful and I decided back then that we wouldn't be doing any of that stuff again unless there was some physical issue that might need to be addressed. But just to find out the progression? No, I know all I need to know about what's going on. That said, that is just me and if the MRI would not be stressful to your DH, and if it would make you feel better, why not just go ahead? Other than the expense and the potential stress to DH, I can't see the harm in it.

Best wishes for your difficult journey.

Iris L.

I had an MRI in 2003, then again in 2008 and 2012.  The "intensities" that they report on were increased each subsequent time. I had decided that I would not have another MRI.  But the 2012 MRI reported that my ventricles were enlarged.  The neurologist brushed it off.  It's now 2022.  I don't know how large my ventricles are now but I'm still not going to have another MRI.  

Iris

riajean

Thank you.  Not going to do anything at this point.