Alternative to Colonoscy

Josie in Podunk

Today we went for our annual Wellness Check.  Handyman went grudgingly saying he did not need it and it is just a way for the Docs to make a quick buck.  What ever.

I fibbed and said we could lose our Medicare Coverage.  He went, but pouted in the car the whole way.  Again…what ever…he went.

Things were just find until we got to the meds list and he declared he was done with meds.  Sigh.  Doc leaned over and told Handyman I needed him healthy so he could take care of me cuz I am older the he is.  3 months…but…what ever.  It worked and he agreed to take them as long as I take mine, too.  Fair enough.

Again things go smoothly, albeit slowly due to have to repeat everything at least 3 times.  Right up to the Colonoscopy.  Nope.  Not budging on that one.  No big surprise there and considering my concerns regarding even light sedation for him…not the hill I want to die on.

Then Doc suggested at FIT Test that is done at home yearly, dropped off at the office upon completion, is reliable, and Medicare accepts it as an alternative.

Ding…ding…we have a winner and we move on.

Onna roll we make it through his last pneumonia vaccine and the blood stick and out the door.

We will, howsumever, not cover my lack of self care other than the promise to do better and to come back in 30 with visible proof of said promise.

All in all a successful Doc visit.

dayn2nite2

Sounds like a lot of work on your part.  Since he has dementia, why not cut unnecessary doctor visits and testing out?  If he were to have cancer, would you even treat?

You need to conserve your energy here.  Taking him to “wellness” visits, explaining things repeatedly and discussing needless tests is absurd in the context of his terminal disease.

Josie in Podunk

Day2night2 -  were he farther along in the disease I would agree whole heartedly with you. And, would make exactly that choice.   I well know the day will come and am preparing myself for making those hard decisions.  I have learned a lot from my few months on this board.

Re: cancer….probably not…but, for this year we will do the FIT test just so I know one way or the other.

Thank you for your concern and expressing it to me.  I DO appreciate it.

M1

Lost, I have to say I agree with Day2nite on this one.  You have to take all "screening test" recommendations with a grain of salt, and know ahead of time what you would do with the result.  What if your DH fails the FIT test?  What then?  It's gained you nothing and wasted resources.

As an extreme example of this, when I was in general practice I once had a patient who had been diagnosed with inoperable, incurable lung cancer ask me if she needed a mammogram.  I gently said no.  That's the boat you're in here.

For what it's worth, also worth thinking about the fact that it's hard to make an asymptomatic person feel better.

dayn2nite2

I would add that it really doesn’t matter where in the disease he is, going to a wellness visit when he didn’t want to and all the issues that go along with it is not a good use of your energy.

You mentioned that you need self-care.  Whether medical or emotional, a better solution would have been to leave him at home ( with or without someone supervising depending on his needs) and you take care of you, whether that’s doing something you enjoy or seeing the doctor alone so you can address YOU.  

Ed1937

I wouldn't take my LO in for general screening tests, but I wouldn't want to have to make a decision on whether or not to treat cancer. It may or may not give them more time, but I wouldn't want them to experience more physical pain than necessary, either. Another hard choice.

JoseyWales

Just weighing in on the FIT test.  I did those for the last several years instead of a colonoscopy because of the demands of caregiving. Well, last November the one I did came back positive. So I went for my first colonoscopy. 2 polyps were found and removed. Great. I'm good for 5 years now.

BUT my insurance did not cover the colonoscopy at 100% like it would have for a preventive screening. Because I had a positive test the colonoscopy was now considered a regular surgical procedure, and deductible and % cost applied. Boo.

I'm not sure if it's the same with Medicaid, but this was my experience with my regular employer insurance. There was a real *cost* to putting off the colonoscopy for me. 

Pathfinder52

Dear Lost --

You need my book on self-care!

You're hedging your bets because he's not "that far along in the disease" -- this kind of thinking will catch up with you.  You need to be prioritizing YOU throughout this journey or you'll run out of resources (time, money, energy, friends, supports, health) to get you through this for the long haul. 

I've been at this for nearly a decade, and it is far too often a marathon, not a sprint.

Wishing you all the best.

--p

ImMaggieMae

LostinPodunk, I agree with you. I take my DH for wellness exams, but I weigh any test that is invasive against what action we would take if the test were to come back positive. “If we did this, would we treat it any differently or do anything that e aren’t already doing?” Skin cancer checks, dental exams, hearing tests, comprehensive bloodwork, are all things that we include. I will do whatever I can to make a very bad situation better for my DH while I still can. But that’s just me. Yes, dementia is terminal. I remember my late MIL telling me once,  “Sooner or later something bad enough is going to happen to you that it will kill you. Life is terminal.” What’s the life expectancy these days in the US? 76? 77? How close are you? None of us is gettin’ out of here alive.

JJ401

My husband is 79. He’s never had a polyp. So when his primary started talking about husband needing a colonoscopy, I said I thought the guidelines were if you were over 75 and have never had a polyp, you could stop colonoscopies. He’s never had a polyp and there is no family history. Primary backed off.

Then I felt guilty, so the next month when I saw my gastroenterologist, I asked what his recommendation would be considering age, dementia, and the other health issues husband has. My gastroenterologist said he would not push it.

Dragging husband through the prep would have been awful.

Josie in Podunk

JJ401 wrote:

Dragging husband through the prep would have been awful.

I appreciate this.  The prep and the sedation were my biggest concerns.  He easily agreed to the home test and it will give me a place to work from going forward.

 Now…to be fair to my sweeties…he has never liked going to the doctor or having annual exams.  Even without the dementia he would have balked and needed to have been convinced he needed to go.

 The repeating things is due more to an almost profound hearing loss…for which he refuses the hearing aids and I don’t argue with him about it…it would be a waste if time and money.  I pick my battles.

The lack of self-care is my own fault and I won’t make excuses for it…only doing better for myself for my future sanity and stamina.  There is more going on in my life than just Handyman’s dementia and I have to keep my spoons in order if I am going to cope with the things coming towards me in the next several months.  All of which makes me grateful that Handyman’s regression is slow at this point…I know that can change.

I thank all of you very much for your input…all of it is important for me to hear and digest.

aconite

My DH is in the early stages of this disease, but has little, if any, short term memory.  However, he does most activities of daily living for himself. 

The prep for his recent colonoscopy was more of a challenge for both of us than I expected.  I expected to manage what he needed to do and when.  But I did not expect to need to watch him constantly to make sure he didn't eat solid foods.  He wasn't combative at all - he just could not recall or understand why he was restricted.

I fell asleep during his final stages of the prep and he did find a banana to eat.  The docs after consultation with us decided that they could go ahead with the procedure since it was several hours from the time he ate it until the procedure. 

But the experience did also let me know that his reasoning is failing more than I realized.  Even when he was doing the last phase of the prep, it didn't occur to him why or that it implied he shouldn't eat. 

Not something we'll be doing again!

Josie in Podunk

Aconite, I hear you.  Went through multiple preps with my Mom until she was 90 due to recurring precancerous polyps.  Got a call from her doctor’s care planner when Mom was in Hospice reminding us she was due again.  Apparently, right hand didn’t talk to left hand so I had a polite, but firm discussion as to why we would not be obliging.

I knew what a trial it would be for both Handyman and myself to prep him for this and just was not willing to put either of us through the aggravation of keeping him compliant regardless of how much easier it is these days than when my sis and I started with my mom the first time 30 years ago.

We live and learn.

Thank you for sharing your story with me.

Josie in Podunk

MaggieMae…we are both 71.  If I hold true to family genetics…and take care of myself…I could easily live well into my 90’s.  Mom was 93 when she died.  Had she not developed End Stage Renal Failure she may have reached her goal of 100.  Dad was 84 and died from sepsis due to chronic UTI’s that were difficult to treat due to his allergies to every anti-biotic they tried.  Sulfa drugs work, but they take longer and due to his unwillingness to comply were ineffective with the final one that took his life.  Dad was a stubborn man.

Handyman’s genetics are a bit more iffy.  Had his mom not had a heart valve replacement she would have died in her 70’s.  He has no sign of heart disease.  His dad died at 74 due to complications from a rare form of dementia that began with an unusual kidney infection.  We monitor Handyman’s kidney function as a result even so the likelihood is infinitesimal that the same could happen to him.

Other than blood pressure issues and his dementia we are in decent health.

And, I have already restarted my path on self-care due to a delightful tele-health session with a marvelous person on our Senior Care Plus team through the hospital.

Thank you for your input.