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jewels_ks

A new update on my mom

jewels_ks
3 years ago

My mom is home from the hospital and has been for over a week. She got her staples removed the other day and has home health care 3 days a week. She had a neuro-endocrine tumor removed from her intestine and it was all removed. I talked to the surgeon's nurse and my mom's gallbladder was attaching to her colon so that is why that was removed, but I'm not really sure why they were not done at the same time. My mom suffered dementia before this surgery but it has tripled since this surgery. She says random stuff in the middle of a conversation, and its just very sad to see. When she is sitting in her chair she tends to look down very often. One of the roughest parts they are having is night time. My mom gets up about every hour to use the bathroom. I think its her dementia and not a bladder problem. My stepdad and I have pretty much agreed to disagree, but the threats of lawyers and other nonsense has stopped. I go over there every day to check up and bring them supper about every three days. Right now I have a Tuna casserole baking in the oven (it's a favorite of my moms from years ago).

Comments (32)

  • Ded tired
    3 years ago

    My heart goes out to your mother and to you. I know how very difficult is to be a caretaker to a parent. I’m sorry stepdad is making it even harder. I hope your mom regains some of her mental faculties as she recovers. Hugs to you. You’re doing the best you can, no one could ask for more.

  • socks
    3 years ago

    Sending you a hug jewels. Tough times for you.

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    Social work is actually a good piece of advice.... Although they can't give you information protected by Hippa, they can direct you in the legal documents that you and your mother can sign to make it ok for you to get information. I hate to be the bearer of bad news, but calling the Hospital Admin- no matter how demanding, angry, persistent, etc that you are- will get you the same result. As a nurse, I can tell you, HIPPA is something that is pounded into our heads on a daily basis. Trust me, sometimes it would be easier to give family the information so they aren't continually calling to harrass us for what we aren't allowed to give. This goes for Hospital Administration, as well. Social work is your best bet. Nurses can't give information that the doctor read and charted because if by some chance we give the information back incorrectly, we open ourselves up for lawsuit and the hospital for a lawsuit. This is also a rule- at least everywhere I have ever worked. Sorry but their are rules that need to be followed. Our society has made it hard because of the fear of lawsuits.
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  • seagrass_gw Cape Cod
    3 years ago

    I hope you have worked out legal and medical POA's. I'm so sorry for you. My mother's second husband became quite ill the last few years of his life and made my family's life a miserable hell. He was demanding, abusive and unapologetic. My mother is a kind, Christian woman but she barely survived his death and our family still has not healed from the politics of it. So my advice is tread carefully but take care of yourself. Find a good elder affairs attorney. Protect your dear Mom.

  • georgysmom2
    3 years ago

    Good news - bad news. so glad your mom is out of the hospital and recovering from some serious surgery. So sad to hear of the other complications. Hugs.

  • maifleur03
    3 years ago

    One of the things that you rarely see a mention of is that some medications can take longer to leave a person's body than it would normally. I do not think it has any thing to do with dementia although it also happened to my husband after knee replacement surgery.

    It may not be her bladder that is troubling her at night but her colon. She may feel like she is about to have BM. As her doctor to see if it is a side affect and if there is a medication to ease the contractions of the bowl. It could also be that she is doing it simply because she wants to prevent a possible mess.

  • nickel_kg
    3 years ago

    Tuna casserole -- what a good idea, using her sense of smell to give her comfort. If she's like many, she will have good days and bad days, but even if you catch her on a bad day deep down she will feel your love and caring.

  • pudgeder
    3 years ago

    Prayers for you Jewel.

    Healing ones for all.

  • morz8 - Washington Coast
    3 years ago

    I'm sorry, Jewels. I know that's hard even without the interference of someone not helpful. As for your Mom's decline, she may very well improve but over time. My mother went through something similar after a fall and stay in rehab, right down to the up multiple times during the night. Routine and familiar surroundings are so important - add the surgery and it can really turn things upside down.

    It went away, not quickly. But she did regain a lot of cognitive skills, thought processes and began sleeping through the night again. I hadn't lost her after all, although there were weeks when I was sure I had. Hang in there, and (((((hugs))))

  • sushipup1
    3 years ago

    Late evening.night confusion is called Sundowners syndrome. Read up on it (try google) and you'll be better prepared. My heart goes out to you.... keep the strength.

    https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-answers/sundowning/faq-20058511


    https://www.google.com/search?client=firefox-b-1-d&q=sundowners+dementia+symptoms

  • kathyg_in_mi
    3 years ago

    My heart and thoughts are with you and your family. Sundowners is a real thing!

  • carolb_w_fl_coastal_9b
    3 years ago

    I understand how living with a parent's cognitive decline can be heartbreaking - and so difficult. My mom is going through that as well. She also was in the hospital and then rehab - twice at the beginning of the year - and was in for the 2nd time when the pandemic hit and wound up staying for over 30 days.

    Also know that hospitalization can take a mental toll on even the most lucid people, and it may take some time to recover.

    Yes, sundowning is definitely real. When people asked me when was a good time to call my mom, I told them after 5 pm. It seemed to help distract her from the bad feelings.


  • jewels_ks
    Original Author
    3 years ago

    Thanks everyone one. I was texting my sister, who lives in Florida, and she said we need to get mom on Phytoplankton, that it is $38 a month on Amazon, that it is by drops and tastes awful. Her husband takes it by drops and eats it in macaroni and cheese. She said she would pay for it if someone would guarantee to make sure mom takes it everyday. I told her that that person was not going to be me, especially if it tastes bad and mom won't want it. I was a litter aggravated after this because she is the one that told me to cool it with the dementia testing and now she thinks there is a easy solution from afar.

  • Marilyn Sue McClintock
    3 years ago

    I am sorry about your Mother Jewels. It is so hard to have to go through what you are going through. Prayers and hugs for you.

    Sue

  • sjerin
    3 years ago

    I would guess meds are responsible for your mom's sudden decline in cognitive ability, and most likely that will improve with time and the gradual removal of pain meds. Do ask her doctor(s) about this when you can. Good thoughts for you, Jewels!

  • Rose Pekelnicky
    3 years ago

    I can relate to your irritation with your sister. My. Mother had some health problems and dementia in her last few years. One sister and I are live in the same area so we dealt with everything as best we could. Another sister, who is quite a bit younger, lives 900 miles away. She was constantly calling one of us and telling us things we should be doing for Mom. Definitely was difficult, and very irritating.

  • glenda_al
    3 years ago

    Caring thoughts your way!

  • Rusty
    3 years ago

    There are a number of studies that say that general anesthesia can increase dementia in elderly patients, and that it can last anywhere from a few days to several months to permanent. There are also studies that say it will not cause dementia. So hopefully, your mother's mind will go back to functioning more normally soon.

    As for getting up so often overnight, has she had symptoms of OAB in the past? It can get much worse overnight, causing frequent trips to the bathroom, sometimes as often as every 30 minutes. (I haven't tried to look this up, I'm speaking from personal experience with a family member.) Does she, or will she, wear overnight protection, such as Depends? That might help her to rest easier.

    My heart really goes out to you and your mother, Jewels. I pray for strength and peace of mind for you.

    Rusty

  • ci_lantro
    3 years ago

    FYI, phytoplankton is available in capsule form. So you can avoid the evil tasting drops if you chose to pursue.

  • salonva
    3 years ago

    Very sorry to read about what you are going through. I think you are doing an admirable job and it's a tough job at that.

    I do agree about some of the drugs staying in the body longer. I recall with my mom when she had any kind of procedure that required anaesthesia it would really be several days of her being mostly normal but then having some realy delusional conversations. Honestly, after a few days, maybe 3 or 4, she was totally back to normal.

    Wishing you strength and improvements all around.

  • carolb_w_fl_coastal_9b
    3 years ago
    last modified: 3 years ago

    Oh geez - my sister on the other side of the country is also continually searching out and buying miracle herbal supplements for my mom. She means well, but my mom can't swallow any large pills or capsules any more. She's always had trouble with that, but now it's gotten much, much worse. And of course, she's on medications that may have negative interactions with such things. I feel bad that my sister spends money on things that just sit there unused and cannot be returned.

    Also, my sister is the type who's always jumping on the latest health fad that some friend or acquaintance recommended - sometimes to her detriment. The saving grace is that she's far away and has no way of knowing if all of her 'help' is always helpful. We have no bad blood between us, I love both my sisters very much. I know they feel helpless right now because they're far away and cannot be with our mom, so I don't get angry at them, but it can be frustrating sometimes.

    NIH & Mayo Clinic have pages of info on many drugs, herbs, & supplements, so you can check if something can interact or if it's considered safe or not.

    https://medlineplus.gov/druginfo/herb_All.html#0-9

    https://www.nccih.nih.gov/health/know-science/how-medications-supplements-interact

    IMO, if there's any doubt, when it comes to mixing supplements with medication, better to be safe than sorry.

    And even someone who hasn't had anesthesia can come out of the hospital extra disoriented.

  • maifleur03
    3 years ago

    For those who receive those supplements unless they are something you can use I would suggest that you toss them immediately. Easier to say that they just ran out than have some pill junky start rumors.

  • Judy Good
    3 years ago

    Anesthesia does worsen Dementia. Be careful with supplements, please check with Doctor first. So sorry you have to deal with this all. I worked in Long term care for 27 years as a nurse, I empathy for you. It is difficult.

  • hallngarden
    3 years ago

    Good thoughts for any of you helping family members. It’s not always easy , takes lots of patience. As we grow older, thinking about our care. We both are still in great health but we never know about the future. When Mother’s health started failing we did our very best to make sure she was comfortable and safe. Bless each of you that take care of loved ones. Judy Good, we were always thankful for nurses that helped with their care. Know you helped many families in your 27 years.

  • Yayagal
    3 years ago
    last modified: 3 years ago

    I feel for you. I've been down that road and it's soo hard. Try to stay focused on your own life and do the most you can for your parents. You're a wonderful daughter and I'm sure your Mom appreciates it. I had to detach myself somewhat, meaning, as I was bringing up a family when my Mom got Alzheimer's. I had to have my focus on my family too and not let worry enter the scene. Some family members disagreed with my decisions but, I didn't take notice of them, as they were never present. God bless your Mom and you, I'll pray for both of you.


  • raee_gw zone 5b-6a Ohio
    3 years ago
    last modified: 3 years ago

    I saw worsening dementia - and also acute onset confusion in elderly with no history of dementia - very often in my hospital patients; not just those who had had sedation or anesthesia either. As someone mentioned about, sometimes it improved toward their baseline (often very slowly), especially after returning home, sometimes it never did go away.

    My grandmother developed such issues every time her MD prescribed Lasix (furosemide). It cleared up quickly each time the drug was stopped. She was tried on the drug 3 times, same result each time - he MD finally stopped trying to give it to her, but I don't think he ever believed that it caused her confusion.

    When my mother had her series of small cerebellar strokes, she had sudden onset of dementia, urinary frequency and urgency (needing frequent runs to the toilet), and then finally developed unsteady gait. At first both I and her doctor thought it was UTI, but the gait issue finally pointed us in the right direction. The strokes only showed on her MRI, not on CT scans.

    I hope that your mother improves, and the difficulties with her spouse recede; I empathize with the strains and frustrations of being a caregiver for an elderly parent and wish you the best!

  • nekotish
    3 years ago

    So many of us in the same boat with aging parents. I know it helps to be able to vent. There are 3 daughters in my family. I have become the family spokesperson while my Dad is in the hospital. When I email updates to my sisters, one always says "you should have said..." or "why didn't you ask them..." I finally told her that from now on, you can only talk to me about what you would like me to say during my next conversation. So far, so good. Keep venting - it's good for the soul.

  • maifleur03
    3 years ago

    To go with raee's mention of Lasix I am one of those people who have severe mental confusion with statins. I have tried at least 6 different types and strengths. I finally got through to my previous doctor and he supposedly marked my chart. He took medical retirement and my new doctor even after I told him I would not take statins and why sent a script to the pharmacy. The previous one was Crestor that I agreed to try. The fourth day I was going to my attorney's office looked at the exit that I should have taken and wondered why it was important. I passed two exits before I concentrated enough to reverse my direction. Since then I have wondered if the Silver Alert people actually have dementia or can not tolerate statins. They work well for some people but not for others. The first one Lipitor I took for several years not connecting the fuzz in my brain to the drug but it never lowered my cholesterol.

  • sjerin
    3 years ago

    Maifleur, do you still take a statin? I just started, though I swore I never would, and hate, hate the brain fuzziness. Though it is nice to have something to blame when I can't think of a word.

  • maifleur03
    3 years ago

    No I have refused and will continue to refuse. Talk to your doctor first. Although none of the ones that I took did not give me the fuzzies some were worse than others. Insist that it is notated in your chart. I do not remember what the next to the last one was but I could want something and stand up. When I stood up I could not remember why I stood up. Sometimes I could think of it in a few moments. Sometimes not. There were times after I remembered what I wanted and walked into the kitchen I had no idea why I was there. By then I recognized what the problem was and stopped taking the stuff. About 5 days later my mind cleared up.

    I decided if the choice was between early dementia which was how my mind was acting and a possible stroke or heart attack later I would rather be able to think until I had either of them.

  • chisue
    3 years ago

    There are advantages to having been an only child! Care always seems to fall to one child anyway. Without family, there's no one to help, but also no one to second-guess you. I was fortunate that my DM was mentally competent, and had no aged/deranged spouse to make life harder.

    IDK if it's been documented, or know appropriate dosage, but Co-Q-10 is supposed to help flush statins. (I think statins are over-prescribed and believe that the attention to cholesterol levels is overstated for many people.)

    The KT has also discussed the brain fog from a common anesthesia for colonoscopies. I learned to refuse Versed.

  • Ont_Gal
    3 years ago

    Thinking of you Jewels (((((hugs)))))

  • Elizabeth
    3 years ago
    last modified: 3 years ago

    Does your Stepdad have any one coming in to help? I know, from personal experience, how hard it is to take care of someone with dementia one-on-one. If he is older he may not have the energy to do so. There is also good deal of loss of sleep. It will wear the care-giving spouse down.

    Has her Dr. prescribed any medications that could help slow the progress of the disease? Is fluid retention in her legs causing the nighttime bathroom trips?

    Best wishes.

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