Dementia patients just "not feeling well". True or false?

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For the past 2 years I have had times where my Mom hasnt felt well. I tried calling the drs, asking lots of questions and all I ever got from the Drs secretary was "its dementia."
However , I do understand now there an be no rhyme or reason to them just "not feeling well" or having chills but there is also reasons ignored by drs. After negative urine tests, I took my Mother to the dr and pleaded to just try amoxicillin for a possible undiagnosed UTI. Sure enough the soaking wet nights slowed right down and so did her chills and extra confusion. I now keep her on 1 amoxicillin a day. Then we had the "not feeling well" days come back this year. I just happend to notice while bathing my Mom, a discharge, and called the dr for a possible Yeast infection (hense the amox) and he treated her Monday with just one pill for it. Her daycare, morning cna, and I are all shocked at how HAPPY she is again.SO..when we keep getting the "its only dementia" answers, please dont always believe them. We are their only advocate and we know best. Pats on the back to all of you out there in cyberland taking care of your familes!!
Luvmom

18 Comments

Yes when they become dispondent...something is going on...!!!!!! Usually a UTI or constipation.....something like that.
LUVMOM: One (important) word of caution about using an antibiotic as a preventive every day..... she will build up a resistance to the 'antibiotic' and if she gets an infection that requires an antibiotic, it will take one that is stronger to combat any NEW infection.

Why not look into the use of D-mannose (I have posted this natural product many times).

Please consider this ok? I am not a doctor/nurse but one of the things we have to do is know how to 'work within the system'

I would have a URINE CULTURE done, sometimes it isn't a simple UTI, so be safe.

God bless
Thanks Mia, I have had 3 urine cultures done on her and were always negative but she did have them. I do understand what you say, but the Dr said its such a low dose its okay. After all. Moms 89 and testing false positives all the time seems so much worse, if you know what I mean. Thank you!
Pirate, yes constipation too, you're right, forgot that one. We are taking precautions daily for that too, after her impacted twice! Thanks
I wouldn't change things either, as long as it is working for her. But look into the D-Mannose since it doesn't interfere with any drugs/antibiotics at all.
My DPOA SIL thought she knew everything b/c she's an RN. The scenerio: My MIL lived with my husband, son & me. DPOA SIL was in charge of finances. We saw the day & night occurrences. I would tell my DPOA SIL that I thought MIL needed to be seen by the dr. I don't drive. My husband's hands were tied b/c he wasn't on list as DPOA. Sometimes, when my MIL was here (now in Nursing Home--NH)--she was hard to handle. We kept it to ourselves when DPOA went on vacation. MIL was clingy to her. Most weeks, DPOA SIL helped out by taking o/n 1 or 2 nights/wk. (a welcome respite). Also, 1 day and evening until bdtime 1 day/wk. It changed when she had a grandchild to some degree. There were 5 children to take care of her and I also did a lot since I was primary caregiver. I am married to only son. So that leaves 4. Then there is DPOA SIL--that leaves 3. Then there is youngest daughter, who came over to give her showers and take her out to lunch once a week--that leaves 2. Then there is the oldest daughter, she cooks a lot and has grandchildren that she watches on weekends, she would also take MIL (to me) on Saturday afternoons until bedtime--that leaves 1. Then there is her 3rd daughter, who is also an RN and respiratory therapist, she hardly came over to see her. MIL thought she was dead when I mentioned her, b/c she hadn't been over in a while to see her. I tried to get her to come over and see her, but she always had an excuse. At least the other daughters and son made the time to see her. Then when MIL went into NH, 3rd daughter went to see her more often at NH. I'm guessing it slowed down due to major flu outbreak in area. My advice to ALL caregivers: Listen & go with your gut reaction. If you think they need to be seen by the dr., make the appt. Don't 'hee-haw' around about it. The last dr. appt. that my MIL had was put off, b/c DPOA SIL didn't think she had a true UTI. I think she didn't want to take the time off of work to do her job as DPOA. I'm not the only one to think it, either. It's just that if you don't get the elderly to see the dr., it ends up getting worse. In this case, DPOA SIL put dr. appt. off and MIL acted out of sorts and she is a major fall risk. She started having bruises on her that some, I could explain, but most--I couldn't. I wanted to get a Home Health Aide (HHA) in for at least a week to see why she was getting bruises. I couldn't stay up all day and night, and be expected to take care of her the next day (and be at my best). She had dr. appt. DPOA SIL couldn't take her, and it turned out my husband (only son) could. She went str8t to the hospital from the drs. office. From the hospital, she went into the Nursing Home (NH). The sisters didn't even bother to ask my husband's (only son) opinion. I could see why they didn't ask me (b/c I'm not blood-related), but I was her primary caregiver--but not to ask my husband (her only son). That was a BIG mistake on their part. It's been almost 8 months since she went into NH and we're just starting to come together. I have a feeling
it's not going to be the way it used to be. We used to get together whenever there was a birthday and I saw that on Labor Day weekend they celebrated everyone's birthday at one time and no gifts. No gifts is not a biggie, when everyone's in this economy and really don't like the situation of her being in NH. Although, I can just bet 1 daughter likes the NH scenerio. I don't know why, though. Just listen to your gut reaction.
Hi,

Another word of caution: When elderly patients are tested in the drs. office and it comes out 'negative' in office don't assume it's negative. Most elderly patients go into drs. office and it tests 'negative' and the drs. office sends it out to a lab and it comes back 'positive'. The reason I know this is b/c my MIL had it come back 'negative' in the drs. office and it was sent out and came back 'positive' and then was put on antibiotics. My MIL saw my GYN, not b/c I suggested him, but b/c her dr. suggested him. I felt comfortable enough calling the drs. office after it came back 'negative' and told them it can't be negative, she has to have something. That's when the girl told me that they sent it out to a lab and had another elderly person's culture come back 'positive' after having tested 'negative' in the drs. office. I hoped and prayed it would come back 'positive' b/c MIL was not acting like herself at all.
For one, she was very argumentative, refused to take her meds, refused to go to bed when she knew she had to get up the next morning, refused to get dressed for bed, refused to do anything.
She is generally a gentle person who will do what she needs to and doesn't cause a fuss. So if drs. office doesn't intend on sending culture out to be tested by lab, insist that they do. DPOA SIL more or less, said "Haah, she tested 'negative' for UTI." ...and she's a nurse???
Dr.'s don't always know whats wrong. We know are bodies the best & it's hard when you are trying to take care of your aging parent. I know my Mom is 91!
Hi Ann,

That is right. You are absolutely correct, don't let your doctor hear you say it. My son was born premature and in the hospital for almost 2 1/2 yrs. He was in there that long b/c various people didn't wash their hands between patients and b/c he had a trach. in, he was vulnerable to all sorts of things. The intern doctors took monthly rounds. So, the one constant was his primary care nurse and his pediatrician. We would also have monthly care conferences. The monthly doctors wanted to try some sort of surgery on him. At the time I knew, but it's been 21-22 yrs., I don't remember. The one thing I do remember is he had some sort of surgery less than 2 months before they wanted to do surgery again for something else. I wasn't about to let them treat him like a guinea pig. I had the current edition of Complete Guide to Prescription & Nonprescription Drugs by H. Winter Griffith, MD (now revised & updated by Stephen W. Moore, MD). At the care conference where the surgery was discussed, I brought my copy of the book with and, at the right time, I brought up if you're on this drug then you need to watch out for this and that, and warnings and precautions. The medication he was on said something about surgery and his pediatrician wanted to see it. Long story short, the pediatrician agreed with me (and I'm wasn't going for a nursing or doctorate degree). So the surgery that the resident (monthly) doctors wanted to do was abandoned. They found another course of treatment. I have always had the research bug in me since I got married. Fast forward years later, I had been researching my MIL's meds and all procedures her doctor wanted done. UTI's even. I think my DPOA SIL was jealous of me, b/c of the things I found out & I didn't mean to make her feel inadequate as a nurse. I just had some time to research (mainly when my MIL went to sleep at night or early in the morning--when she wasn't awake). Always trust your gut reaction.
Good luck!
Along with your other precautions, there is this amazing almost miracle food - coconut oil. Do your research, and then consider adding it to your Mom's daily routine. I think you'll be amazed at the difference in several areas. It's also a great skin-soother, lip balm, hair and scalp treatment, and butter replacer. I use the book 'The Coconut Oil Miracle' as a guide both in my caregiving and home routines.
I learned thru a sick pet that a UTI can hide and it can in adults. After treating my mom who had negative urine and cultures, it cured her extra confusion and over wetting at night like a charm. Sometimes just ask to try a medication, it works.
I read about coconut for memory at one time, is that what you mean Ruth1957? How much daily, does it cause diareahea or help with memory? I do know my mom is more alert after 2+ cups of coffee for sure. But sometimes it backfires and causes wandering too. Thanks everyone for all your posts....
LM

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