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Mom is on comfort care (like hospice) which means no life extending treatments, no tests, PT or x-rays, and no iv's, feeding tubes, or CPR etc. We agreed the NH should treat for UTI as that falls under keeping her comfortable. At 101, 82 pounds, with a fractured pelvis, broken arm and dementia Mom will never recover, walk again or care for herself, needs 24/7 care and will live in the moment and constantly try to get up.
One of the questions on the list was if she develops upper respiratory distress, should they x-ray and treat or just administer oxygen. I told them I couldn't make that decision without my sister, and she too, does not know what to tell them, whether it is right to prolong things with antibiotics or keep her comfortable and let her pass naturally.
So, I am asking my forum friends, what would you do? What is the right thing to do?

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I too am going through the exact same thing and now have to talk to the doctor today. My mom has a broken hip and knee cap and has a catheter. Whenever they have to change it she says she is being raped. Our elderly shouldn't have to suffer this way..
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amygrace - the same question - re antibiotics - was put to me yesterday by the doctor on the geriatric evaluation team. I asked her what her recommendation was considering that she had done a review of mother's condition. She said to not give antibiotics but to let nature take its course. I agreed though I can't say it is an easy decision, but I am sure it is the right one. This just is a hard time for everyone and the decisions weigh heavy. I mentioned to the dr that I thought often these days modern medicine prolongs the dying process rather than prolonging any life with quality and she agreed. I know what you are going through.

No one has made any predictions about how long mother has and I don't suppose they can. The doctor said in cases like mother's often their heart stops in their sleep and they don't even know why. I am sad too - end of life is always sad I think. I have no idea if I will be able to get there when the time comes or if I will get a phone call that she has gone. I will go down in a week or so and see it as a farewell visit though she may go on for a while. This is such a difficult time. ((((((((Hugs)))))))
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It is ironic that the very people who regularly deal with elders dying seem so reluctant to acknowledge that fact and offer practical advice. Maybe some families prefer to remain in denial, but I would want all the truthful information they could give me. Even if a hospice group is not willing to travel so far out of their home base on a regular basis, would it be possible to hire a palliative nurse on a consulting basis? I think you are a lot like me, you just want some straight answers without having to go searching for them on the web.
I have heard a palliative nurse say that they can control their deaths up to a point, if she wants you there she will hold on until you are present, if she goes at night it will be because she preferred it that way.
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It probably won't be necessary at this point and its too late to move her. My niece who is a caregiver (she is taking care of my sister now) seems to think she has only a few weeks at most.
My sister is home now and visited her yesterday. She isn't eating. They moved her to another wing which appears to be people who are bedridden. They said they moved her for handling security or something like that. I think they mean she needs more experienced people than the usual aids and took her off the rehab wing. I haven't been there yet, hubby going in for surgery today so I won't be able to go until tomorrow.
I find it very difficult to find someone with the medical authority there who is able to answer my questions, like what happens now, what should we expect, etc.
I feel very sad that when the end is close, I might not be able to be there unless it is in the daytime. Neither my husband nor I can see well enough to drive at night and the NH is 40 miles away isolated on a country road. There is no place to stay within 15- 20 miles. My sister can't drive at night either.
One day at a time...........
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Amy, does mom have the funds to hire an aide to watch her around the clock?
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My mother, last year, got up in the middle of the night out of bed and started walking down the hall. The people said they were astonished to see her, she never did such a thing before. She fell, broke her hip. But it was in a good place, for a broken hip - they took her to the hospital next door, a short operation with a pin put in place, back to the NH 2 days later. She recovered well, at least she can stand up now with help and isn't a dead weight in bed. This year, she was coughing and had a lot of phlegm. They called me and asked if breathing treatments would be OK, and I said yes, I wanted her to be comfortable at least. The next day, they called and said she was much better....She is going to outlive me. She has beat cancer, heart attack, thyroid problems, broken bones, now she has dementia (but it is 'happy demential') - they all love her at the NH and there is no reason she won't live to be over 100. Long after they bury me/
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My mother did the same last week. Didn't hurt herself and couldn't explain how she got there. They found her on the floor in her room. It was the first time this happened. I see it as a sign of further decline. I don't know what they will do if it keeps happening. It is a worry isn't? ((((((Hugs))))))

Keep us updated. These strong centenarians keep going,,,
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Oh wow. Just got a call from the NH. Mom managed to get out of the bed and fall on the floor again. She's ok, didn't get hurt because the floor is padded and the bed very low. They said she was scared, and needed comforting, but didn't really know what happened. Even with the bed alarmed, and the room right next to the nurses station, she manages to get herself out of the bed in the 5 seconds before someone can get there. She simply doesn't know what she is doing any more and she needs to be monitored every minute which they obviously can't do. She will be sound asleep, and the next minute she is up, sedated or not. One day at a time, but I know eventually this has to end badly.
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AmyGrace ~ One thing I see recommended in threads here is -- ice chips in the mouth to provide a little hydration. Maybe you can mention to the NH? Or, when you go there, give mom some and see if she seems to appreciate them. Big (((hug))) to you. You're doing great! Way to be there for your mom right now!
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AmyGrace, my Mom had issues with her geri-recliner, too. One time the nurses used a seat belt type of thing but Mom was pretty quick at unbuckling it... it comes from years of experience as she hated the seat belts in the car... while driving I could hear "click", and had to call back to Mom to put that seat belt back on.

As Veronica91had mentioned, pillows can help, the nurses would put a pillow under Mom's knees while in the recliner, and that would help slow Mom down from trying to climb out.

My Mom also had the air mattress where the side would cradle her, but she would still find some way to try to climb out. It was so sad to see. I was always trying to put her legs back to the middle of the bed, and my gosh Mom was so terribly thin. And Mom would also pick at the sheets, like she was trying to make something that looked like an old fashioned fan.

Like you, every time I left after seeing Mom I would think, please Lord take her.
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(((((((((((amygrace))))))))
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Mom is on a blowup mattress and the sides cradle her to keep her in. Amazingly she has no bed sores. They turn her, use lotion and her feet are encased in foam pads. There is a puffy soft mattress thing in her geri chair. They are truly trying to keep her comfortable every way they can. She has no breathing problems and they have diapers on her, and we have instructed no IV's or feeding tubes. She keeps going down, barely eating, then rallying and eating. I do think they should be giving her more water though as her mouth hangs open all the time and seems really dry. This is so awful. Thank you for all your prayers everyone. Please God, take my Mom home so she can be with my Dad and be happy again.
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Amy you have absolutely reached the right decision. If antibiotics are used that can cause all kinds of side effects particularly diarrhea which is very unpleasant. Mom is at the very end of life and I would advocate the use of sedatives to keep her calm and not thrashing about. A little something for the pain can also be helpful.
I can understand why she tries to get out of the geri chair, they are the most uncomfortable pieces of furniture ever invented. Make sure she has plenty of pillows to cushion her and maybe she will sit still. She needs a cushion under her butt, one or two behind her head,one under each arm and a couple placed lengthwise under each leg. Unless she is really short of breath and distressed by it skip the oxygen, it irritates and dries out the nose and puts pressure on the ears which can be quite uncomfortable. Discontinue any IVs, they can also get quite uncomfortable. Consider a urinary catheter but make sure it is not too big a size 14 French is a good size to start with especially if she is small Yes, they do cause more UTIs but that is better than having to haul her around to change her every few hours. Be sure she does not become constipated because that can make the elderly very restless especially if they are non verbal. Keep her mouth moist with wet swabs and ice chips.
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Amy thinking of you and Mom.. Hugs for strength through this difficult time..
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Mom looked worse than ever today and barely lucid, talking but barely understandable, and not comprehending what I wrote on the white board. But still she had already gotten her legs halfway over the side of the bed, twice. I tried to move her but she is nothing but bones and so fragile I was afraid I would hurt her. Same report from nurses, she is strong, determined and keeps them busy. Yesterday morning her BP was 70/40 and they thought they would have to call me. In a few hours she was sitting up and ate most of her lunch, BP back to her low normal. She still pulls her splint off every day and has to be sedated and even then thrashes around. We can't tell if she is in pain or not - she usually doesn't recognize when she is. She is totally helpless and getting complete nursing care but doesn't know why she is there. For someone who has never enjoyed anything in life its hard to understand why she is such a fighter to stay alive. How much longer can this go on? We just want her to go peacefully to sleep and not suffer living like a 3 month old baby.
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Great above advice. Thinking of you. AmyGrace..
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I am in NY as well, and the hospital used the posey belt to stop a slide-out. They just needed the MD to order it. She had a previous fall at the hospital, because she would forget she couldn't stand up. She would even forget the belt was on and be very puzzled.
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Pam, they were working on something to keep her in the chair -NY is really strict about restraints so I guess they are trying everything they can legally do. She is on morphine (for the pelvic fracture) zoloft for depression, and clonzapam for her constant agitation. Its a lot, and probably why she is mostly out of it. At this point, its better she is out of it. When she isn't medicated she is a handful and her dementia makes reasoning with her impossible. Unmedicated she is just lucid enough to know she is losing it, constantly wanting to go home, doesn't want us to leave, fidgety and that makes her even worse, so it is better she doesn't know so she doesn't get upset. Without the meds, she would be constantly getting up and falling every time their back is turned, or if restrained, screaming and crying. It is no longer a blessing to have strong vitals and heart keeping her alive in a miserable un-reversible state.
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Amy, our mom wore a posey belt when in a geri chair, because she kept sliding out and falling. The MD can order that, not as a restraint, but for safety. Her wheelchair had a tilt function and she had to be tilted back quite a bit or she would slide out of that too. Make sure she gets her roxanol, both for pain relief and easier breathing.
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AmyGrace, what you described is so much like how I am feeling. I find my head quivering from the stress.... terrible heartburn... and that shallow breathing that you describe. When I wake up in the morning I automatically get hot flashes that do go away after 10 minutes [I am long past menopause].

I find myself sleeping while watching TV, no matter what is on... my gosh, I even fell asleep watching a Republican debate.... now that is seriously being tired.

I do take something daily for my nerves, but now I feel like that isn't helping... I am just scared silly to try anything else as I am pill sensitive and usually wind up with all the side-effects listed on the pharmacy sheet.

When it comes to going out for dinner, I haven't been out in seven years, nor to a movie, or for a ride out in the country. Forget vacations, I want the safety of my home [cocoon]. And I can't concentrate on anything for too long, either.

As for your Mom, I would vote yes to treating UTI infections as it is part of the comforting of the patient in Hospice.
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(((((((amygrace))))) It does sound like antidepressants could benefit you. I am glad you are looking for help. I agreed with the others - comfort care only. My mother is getting to that stage too though she is still able to use a walker sometimes. It is very wearing, Take care of yourself!
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I'm realizing I need help coping emotionally after 8 years of this. Not sleeping well, waking with weird painless throbbing in my head at 3am and when I wake in the morning for the past six months (lots of tests and doctor still doesn't know what it is) no energy, feeling blue, dreading going anywhere, even vacation or out to dinner, aching body, can't concentrate and irritable. I will call the doctor and ask about antidepressants for myself. I need to feel like me again. So much worse in the past 4 months and its starting to take my body down - just feel drained.
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They would probably notice a foul odor to her urine when they changed her diaper.
They might notice a change in her behavior ie: more confused and disoriented.
Some places will automatically do a urinalysis if they even suspect a possible UTI. The problem with this is that if you've decided not to treat a UTI with antibiotics there is no point in doing the test. So be sure you make yourself clear to the NH what your families careplan for your Mom is. A NH may suspect a UTI but the only way they would know for sure is by doing a urinalysis and again if your not going to treat, why do the test.
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I was wondering how a NH would even know if a person had a UTI if there is dementia and is half out of it, using diapers, doesn't walk, and doesn't express any feeling of pain. I would guess if Mom had one, they wouldn't know anyway, which would be all to the good. Since she is barely drinking or eating, there probably isn't much output either.
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Amy, you have made the right decision! If, and only it she does develop a urinary tract infection which is symptomatic, or causing her pain, then like you, I may think about treatment, but if no painful symptoms, then I would let that go too! Treat any breathing difficulties with oxygen, and let her die comfortably and in peace! You are doing everything right! God bless you and your Sweet Mama! What a wonderful thing to have reached the 100 year mark! You must have taken such good care of her! You deserve to have a chance at a great life yourself now!
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Amy, I have nothing to add to the excellent advice and support you've already gotten on this thread. Just wanted to offer my best wishes for you in this difficult process. Stay strong.
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AmyGrace, same thing with my Mom, heart was healthy but everything else was gone like her hearing, her vision, she couldn't sit up or stand up, she was befuddled most of the time, and always appeared so uncomfortable because she had lost weight.

My Mom was also trying to climb out of bed and numerous times her room-mate would signal the nurse as Mom would get either caught up in the rails below the bed [it was set as low as it could be] or she fell on the mat.... also kept trying to climb out of her geri-recliner getting her legs tangled up in the metal parts.

But that heart was healthy as all get out !! The doctors/nurses/aides were amazed my Mom was still with us at that time. I, too, was so physically and mentally exhausted... I thought my Mom was going to outlive me.
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I just visited Mom, and watching her for 2 hours, I've made my decision and my sister concurs. Mom will get oxygen and be kept comfortable but no life extending antibiotics. Her heart is healthy, but everything else is gone, her hearing, her vision, her body, her mind and it doesn't make sense to prolong her agony if God wants to take her naturally. She needs to pass sooner than later because her life is awful and she is almost the living dead. She either is confused and thrashing and trying to get away, or she is medicated and sleeping, twitching and talking nonsense or calling "help me help me, I don't feel good". She doesn't recognize me now. They tell me when they get her in the geri-chair she talks to them a little but still tries to get out. If she was fully aware of how she looks and her condition she would not want to live. They have to tell her every day she has a fractured pelvis because she doesn't remember and then denies it. At this point, I don't know who will go first, her or me! I think me sometimes.
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The use of antibiotics is a tough one for a family to decide. My brother and I had to address this when filling out our Moms' POLST form. After careful consideration we decide no antibiotics for any infectious process, including UTIs. To some it may sound cruel, but like you, our Mom will not recover she has advanced dementia. In a way, giving antibiotics is like giving CPR to the immune system. They are powerful drugs and yes there is a time and a place for them, just like there is for CPR. The elderly dying of infectious disease, for example pneumonia or UTI, is not new. In fact pneumonia used to be called "an old mans' friend". The problem we all now face, is antibiotics are used all the time and we've gotten to where we take them for granted. Now each person and family must make a decision when is it appropriate to use them. It's a tough decision. When making the decision for our Mom we asked ourselves a couple questions. 1. Will treating an infection improve Moms' overall quality of life? 2. Will treating an infection cure it or is it most likely to return? Answering these helped us make the decision. Another thing to consider is that infectious diseases don't always affect the elderly like they do younger people. UTIs are a good example. A lot of the elderly will test positive for a UTI but they are asymptomatic, they don't have the symptoms. They don't have the pain, burning or urinary frequency that younger people do, but they may have increased confusion and disorientation.
Our treatment goal for our Mom is to use whatever medication is necessary to keep her comfortable but not to prolong her life. To us, the use of an antibiotic would only prolong her life. It would not improve the overall quality of her life.
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It's up to the family or the person if they have instructed others what they want. I was fortunate that my loved one did that. However, I still looked at other resources to better inform myself. I found that antibiotics may be used, even with Palliative Care, but often the infection will return or they will grow immune to the antibiotic. It depends on what your goal is. I found this piece helpful. See page 23 for the topic of antibiotics. I hope it helps.

avoidablecare/wp-content/uploads/2012/04/Sharpe-Handbook-A-Caregivers-Guide-to-Advance-Dementia.pdf
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