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Need an opinion


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Old 09-21-2013, 07:22 PM   #1
rufous57
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Need an opinion

I want to thank all the members of this forum for making it one of the best resources I have come across for this topic; the past 4 years of our lives have been crazy regarding my in laws! Due to great information I have gotten from this forum, things are starting to fall into place now.(sort of!)

But I have a few questions on what you would do if this was your mother. Here is the situation: My MIL is 89 years old; she is 4'6" tall;weighs 79 pounds. She has recently been diagnosed with dementia. DH and I moved her and DH's stepdad to our hometown(they were 300 miles away) this summer, under heavy protest from both although MIL seems more settled in than the stepdad. They are in an Assisted Living situation; nursing staff see to their medications. MIL has been suffering diarrhea, losing weight although she says she has a good appetite. She has been complaining of lower back pain, which runs down her left leg. DH has taken her to her new GP a few times for these reasons. GP seems intent on doing an endoscopy, technically it will be an ERCP to check for a lodged stone in her gallbladder duct. Plus GP wants to order a colonoscopy-he says it is time for her to have one. (Really? At age 89?) She doesn't comprehend any of what her doctor is saying, her focus is on her back pain, but this doctor isn't saying anything about it, nor does he seem interested in sending her to a neurologist for any further testing for dementia. Would you go through with the endoscopy/colonoscopy if this was your mother or loved one at this age? p.s. She is the type to wake at odd hours of the night thinking it is time to get up. Often she is waiting downstairs on the facility lobby, thinking DH is coming to pick her up at 2:30AM! Any suggestions? Stepdad has late stage Parkinson's, isn't able to speak or walk without assistance, so unable to help her. Thanks for any thoughts. Ruth

Last edited by rufous57; 09-21-2013 at 07:23 PM.

 
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Old 09-21-2013, 08:11 PM   #2
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Cool Re: Need an opinion

Quote:
MIL has been suffering diarrhea, losing weight although she says she has a good appetite. She has been complaining of lower back pain, which runs down her left leg
My mom had a couple of colonoscopies in her seventies, eighties but she had had colon cancer, and a 'hemi-colectomy' earlire to remove the cancerous portion. Those were checks for the cancer's possible return. There are many possible causes of diarrhea, I think conservative treatment should be given a very good try before invasive diagnostic procedures are used. Who's in control? Does her son have a P of A? Or is she 'competent'?
Quote:
GP seems intent on doing an endoscopy, technically it will be an ERCP to check for a lodged stone in her gallbladder duct.
That sounds very much like a 'specialist' field (= a referral) and not something a GP should normally tackle. Could be an appropriate test (& can sometimes resolve the problem during the test).

Are you getting a copy of her medical reports and lab tests? With the lower back pain I'd be concerned about kidney issues (infection check, kidney function check would seem appropriate to rule out as causes).

I agree there's not much point for neurologist testing and would see that as non-urgent/discretionary just now. Is this a 'secured' facility? By that I mean, are the residents "locked in" and unable to wander off?

sf

ps. I lost my dad at 85 in a rest home because of a gross blunder by his doctor in prescribing a cough suppressant. Keeping current on any med changes is essential imo. If I'd of known even a week after he'd started taking it, I'd have insisted it be discontinued due to his Parkinson's syndrome causing swallowing into his lungs (without being able to cough) and deadly pneumonia could likely have been prevented. I didn't find out until weeks later from some billing paperwork.

editted to add: These seem like 'fresh' problems "out of the blue" -- I'd be wanting to peruse her medical reports from before the move for any signs of these (assuming she regularly visited her doctor).

Last edited by SoundsFamiliar; 09-21-2013 at 08:13 PM.

 
Old 09-21-2013, 11:39 PM   #3
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Re: Need an opinion

Rufous... this is what happens when you are at a specialist who has no clue what dementia is! They have a standard protocol that they follow and nowhere in there is any consideration of dementia. Yes if your MIL was 50 instead of almost 90, this is what you would do. But in my opinion, you need to have an overwhelming reason to have these test and not just for possible diagnostic indications or because "it's time".

I will say that weight loss is a symptoms of late mid stage dementia. Yes, they do have a good appetite, they eat well, lose weight, and diarrhea is not uncommon. I saw it with my Mom and my Dad. Dad dropped from 180 pounds to less than 130 pounds, ate everything in sight, and had consistent loose stools. Mom went from 130 down to less than 80 pounds, ate well, and had frequent loose stools with periods of diarrhea. The doctor insisted that Dad have an colonoscopy. I refused and he lived for 5 more years with no worse symptoms. They also insisted on an endoscope because his hemoglobin was low. Maybe it was internal bleeding. I also refused that because I knew his hemoglobin had always run low. That was also more than 5 years before his death. Probably the biggest decision was not to have the last heart cath. Dad was unable to lay still for the previous one and bled out. Then he needed a transfusion but he pulled out the IV twice. It was difficult for us and terrifying for him. So we opted to do no more. I also refused hand surgery when Mom broke her hand. When I finally pinned down the doctor and ask him the outcome if she did not have the surgery, he admitted that it would probably be the same as with the surgery!! Her hand healed very well in less than 6 weeks with only a soft case which could be taken off to wash.

One thing you have to be very careful of is anesthesia. Many times, after a procedure with anesthesia, the brain of the patient does not wake up and they take a huge step downward in their dementia. This is information to know when you are making such decisions.

There are also other concerns with medical procedures and those with dementia. They can not follow instructions. They will not understand what is being done to them and will fight what they don't understand. If you find something wrong, what will you do about it? Would your MIL withstand a major surgery?

The fact that the doctor is not concerned about the dementia leads me to believe that he is not considering your MIL's dementia in his medical protocol. Amazingly and sadly, this is actually typical. I hate to say it, but many doctors have less knowledge of dementia than you do! They proceed as if MIL does not have this complicating disease.

You also have to understand that a loose stool or two is NOT diarrhea!! Diarrhea is when the feces is loose and frequent (at least three to four large movements a day). To be considered chronic diarrhea that needs to be investigated it needs to happen repeatedly for at least 5 days. They also need to try over the counter medications such as Immodium before they proceed with invasive testing. I would also insist on a stool sample test prior to any invasive testing! On numerous occasions I was told Mom or Dad had Diarrhea when in fact they had only had one loose stool. So be sure there are repeated liquid stools in one day before you label it diarrhea.

Also, any trip out of the facility will be confusing. Hospital psychosis is real and prevalent with those with dementia. When taken out of their surroundings, poked and prodded by those that do not understand dementia, they become more confused and agitated! This in itself can cause a deterioration and the potential for returning back to their previous normal is unlikely.

What they should be focusing on is eliminating the back pain. At this point, comfort care is what is needed more than invasive testing.

Does your Mom have a health care directive or living will? You may want to check and see what she put in those legal papers. In the case of my Mom and Dad, that is where I found my answer. Dementia is a fatal disease with no treatment or cure. There does come a point when you need to look at their wishes because this does point to their wishes in these papers. I ask for a Palliative Care consult. The Hospice and Palliative Care team was amazing at helping me come up with a course of treatment consistent with Mom and Dad's wishes and their current condition. Due to the chronic weight loss, both qualified for Hospice under the diagnosis... "Failure to Thrive". They treated the pain when it was present, physically and emotionally, and were a godsend to me! It is not limited to just a few months. Mom was on Hospice for over a year and a half I never sent her back to the ER because the nurses and doctors came to see her. There were no more invasive test request, but her pain was treated promptly. Most importantly, she was never taken out of the surroundings that she had become to think of as home.

These are my thoughts, and the same solutions are not right for everybody But it will give you food for thought before you agree to a test that may be difficult for you Mom or that she may not need.

Love, deb

 
Old 09-22-2013, 06:53 AM   #4
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Cool Re: Need an opinion

Good points, Deb, and I'd forgotten the more holistic approach: probiotics.

My family's found the brand "Enzymatic Pearls" invaluable and for the OP's mother's diarherrea, I think those ought to be given a very good try as an obvious harmless yet direct effort towards resolving the issue.

They're a bit pricey, but the bonus is they can be taken anytime just like a med, with or without meals and have worked very, very well for us (eg. when on antibiotics and needing some sort of good bacteria culture to avoid diarherrea).

sf

editted to add: elderly and with digestive problems -- very strong reasons imo for her taking methyl-B12, I was giving this to my mom (we were using Trophic brand's sub-lingual / under the tongue version, as stomach acids decimate that vitamin) and it had moderate to good effect at modestly reversing her vascular (mini-stroke) dementia; I think most elderly are short on B12 but with digestive problems it's a certainty (we get B12 from healthy bacteria action in our intestines)

Last edited by SoundsFamiliar; 09-22-2013 at 07:22 AM. Reason: the usual

 
Old 09-22-2013, 10:49 AM   #5
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Re: Need an opinion

I want to thank both of you for your thoughtful responses! This has been unbelievably tough for DH, he has always been the methodical, logistical one, but this time I have to be in that position because I don't think he can be objective. MIL's dementia was only recently diagnosed. She has had Type2Diabetes for over 15 years and treated accordingly. She also has taken statin drugs for treating high cholesterol for over 30 years. I will always wonder what that did for her memory loss, but that is beside the point, her doctor had no opinion of my theory. I will get DH to print out or show me her previous physician's reports and records. The fact that she's been on various anti-depressants and oxycodone for many years is another piece of information I forgot to mention, plus she is on high blood pressure meds and gout treatment. Before she moved in to AL, I constantly said to DH," how the heck do you expect her to remember to take all her meds? " This was before he understood what it means to have dementia. For all we know, she could have taken stepdad's meds, which are also numerous.

SF - I am so sorry for the loss of your folks; DH's stepdad has PD as well, and he has big time problems choking and it won't be long before we have to have someone feed him. It's a horrible disease. MIL eats a whole lot better than when she lived at her home. We would constantly find her refrigerator full spoiled food and milk and they had no clue! Thank you for your thoughts!

Deb - Thank you for your thoughts as well. I was agonizing about the effect the procedures would have on MIL's already frail body, but you have brought up another vital point, the anesthesia!! She was violently opposed to this move in the first place. So far, she has handled this new doctor okay, but a trip to the lab for the colonoscopy will be very scary for her, it is for most people. She had to have ultrasound and a CT scan done, she didn't do well at either. I am so frustrated that the GP isn't even talking about her back pain!

I am showing this to DH, and if I have to, I will ask this new GP all of these questions, thanks to you both!

Ruth

 
Old 09-22-2013, 11:38 AM   #6
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Re: Need an opinion

Ruth... everything I see in your post is common place.

Diabetes, there seems to be some connection but they don't know what. This is an area they are researching. It may come down to inflammation. Yet so many good ideas have been shot down, who knows if there really is a relationship or if both diseases are just on a rapid increase. As for the Statin, they have now linked cognitive problems with Statins. I know because I was one of those! The 9 months I spent on Statins gives me a bit of insight into what it is like to live with dementia. Luckily, I forgot my pills when I went on a trip. By the time I arrived back home, I knew there was a connection so I stopped taking them and returned to normal. Later I tried it again with the same effect. No, it does not affect all that way but I do wonder how many are affected? But what is in the past is done and we just go forward from here. My thoughts on Statins at 90 years old.... WHY!? It is a medication that has benefits in the future. It does nothing in the moment. So why is it so imperative for for an 80 or 90 year old with dementia? Both of my parents went off Statins after their diagnosis. Mom did stay on her type 2 diabetic oral medication. Kept her blood sugar in check no matter what she ate which was nice. Oxycodone has it's own set of problems. It does affect the cognition as well causing confusion. It can also increase fall risk because it can make the dizzy or light headed. Not to mention it is very addictive. It so slows heart rate and breathing. You may want to discuss the complications of her medication with her pharmacist! They know so much more about medication than the doctor does.

I had to smile and shake my head when you talked about the medication administration. Yep, I did find Mom and Dad swapping meds from time to time even though the boxes were totally different. It said 3 PM so I took it. Well yeah but it was Dad's heart pill! Dad would take his, refill the box, and take it again. I finally had to hid the refill bottles. Then I had to have their medication give to them one pill at a time. Mom, bless her, would order every medication she saw related to "memory". I threw most of them out when we cleaned out the house because she forgot to take them

I will say that the methodical and logistical ones fair the worst when it comes to dementia care giving. They want a path and a time line. Everything needs to be orderly and logical. There is NOTHING about this disease that fits that description. There is no operating manual and every situation is different. What you least expected is exactly what flies up in your face any given day. You have to make critical decisions in a moment with no indication that it's coming. It does take somebody that can fly by the seat of their pants, make quick decisions, and then be willing to change on a dime. My husband can NOT deal with dementia at all. Being a project engineer he needs that systematic approach which dementia does not afford.

It is also easier for someone that is not as closely related to do this because it takes out at least one emotional level. It took me a while to find a happy place when dealing with my Dad in particular. He was my hero and the person I looked up to. So how could I tell him what do to, put his wishes aside to do what was needed? I was the daughter, and he reminded me often! What came out of that was a simple statement...."Dad, do you trust me?" He did and we would go from there. I also learned to listen to the opinions of others. I weeded out what I didn't want and kept what I wanted but I needed outside input being so close This is what you are doing for DH

The best predictor of how MIL will do is how she has done in the recent past in similar situations. The colonoscopy itself is scary, but the prep is the worst part. How well is she going to cooperate there? With inadequate prep the procedure will not give good results. Yep, then you have the anesthesia!

Your doctor does concern me. If there a possibility of changing doctors? Rather than a GP, finding a Geriatric doctor might be your answer. I was very frustrated with Mom's doctor and did change her to a Geriatric doctor. We had a much better experience with that doctor. At least there was a level of understanding that Mom and Dad were in their late 80's and had dementia. Sometimes you have to be proactive in finding what you want rather than beating your head against a brick wall you can't move!

Love, deb

 
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