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She sleeps so very much. i've tried to meet with the staff doctor [never available] to reduce the strength of her pain meds, in exchange for more frequent doseages. and a mild one for break through pain before PT [she'd then be more willing to do the PT without the anxiety and pain she now has]. Instead they increased her BP meds, which has been under control for years. Pain causes it to raise. Even prior to surgery in 7/2015, i gave her Motrin for break-through pain but she can't tolerate the ES Norco. She was fine on the regular strength, every 4-5 hours. Her fall was in 12/2014 when causing her left arm to come out of place and requiring a shoulder replacement. The NH has no way for her to define the change of one day to the next and no room for even a TV. The Speech Therapist [memory] talks about things in a monotone outside of her reference zone: Lewis & Clark expedition? And he gives her stories to recite back the next day, that she's supposed to memorize? i know she has problems with rumination, forgetfulness and she's now on Nameda to "help". i think the environment - lack of progress and the mix of meds - is working against her. i go there everyday: one day the nurse heard me encouraging Mom to eat, and really chastised me in front of Mom. She said "She's old and has been through a lot, leave her alone if she doesn't want to eat." i was boiling mad, and had to leave. Mom is one who caused the room to light up - all her life. But her resistance and being repulsed by food has been ongoing for at least 3 weeks! What can i do -- i've talked to other staff -- head nurse, dietician, etc - but nothing changes. i bring Ensure in with me - but lately, i end up throwing it away the next day. i've tried crackers [saltine and graham], applesauce, yogurt, ice cream, --- she sends her meal trays back, completely untouched. Help? i love my Mom --- isn't there a way to "break through" this resistance, please? i never had a problem with her eating puddings of any kind - but she won't even eat the ones i make at home and take to her. The plan was for her to get the expert rehab [serious surgery] and then come home! i still want her home ... i don't care how much work it is. [i'm still dealing with that basement flood we had in the winter - but the homecare/ PT folks also had their demands on the days. i've been Mom's sole care taker ... my one sister visits about 3 times a month; the other has not even bothered to visit. i even asked Mom if she didn't want me to come visit anymore -- just to see how she'd react -- she didn't say anything - and she was expressionless as tears ran down my face.

When the PT / OT people try to work with her, she goes through the "anxiety" jittery steps, and "oh Lord, help me.... don't let me fall." i realize it's natural for her to feel insecure, but she'd been there a month, and her sling just came off last week [17 staples in her shoulder and now a pressure wound on her elbow].

Any insights -- how can i get through to her -- how can i get her to eat? i even bought her a smoothie that she loves, but she didn't drink it - it went to waste.

i'd be so grateful. i'm having railings replaced to make it safer at home for her, and yes, still finishing the taxes for last year, amidst the basement flood turmoil/ problems that need to be resolved. Everything is so very topsy turvy. i need nerve blocks again in my back and neck, but i don't have time. My one sister lives 50 minutes away -- she's the one that visits Mom, but doesn't tell me when she's going. She's aware i need help, but "she has her life."

Thank you...

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When I'm not getting what my mother needs at the NH, I contact the Social Worker and ask how we can fix things. For a while, they didn't have a DON, and the communication between staff and especially between shifts is still not good. But having asked in a care meeting, several months ago, when we'd been told a completely false piece of information (that mom had a collapsed lung), why my next call shouldn't be to the joint commission and ombudsman , things have improved rather dramatically.

I think you need to make a list of what you see as problems and make an appointment with the social worker (actually what I did; I showed up at 7 am one morning and greeted the administrator when she walked through the door and told her that things were seriously amiss, and that I needed direction on how to get them put right.) Address the issues one by one and get a plan for how they will be addressed and when you can expect to see a change.

So for example, "when will Dr X be available to meet/talk with me about mom's pain relief regimen? If not the doctor, then who CAN make a change so than her pain is covered better". You get the idea.
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Pain is exhausting and will cause a person not wanting to eat. Happened to me personally after a painful injury.

Night time the pain was worse when I was trying to sleep because I just couldn't get comfortable, so I watched a lot of old re-runs on TV... then in the afternoon I would sleep sitting up on the sofa.
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If you are willing and able to take her home, and bring in your own care. I would do seriously consider. My folks are a plane ride away and I was not getting the care that my mom needed. Every time I asked for help, I was told "we are giving her the best care needed." When I came in for a surprise visit, it was the inside staff (cleaning people) who noticed that I cared about my folks. They told me only part of the real story.

I finally found a different home to take them do (they could not have moved North to the cold, where I live, nor could my sister care for them), the facility said I was making the wrong move/decision, and that they would both die within a few weeks or months.

I found and hired 5 incredible independent care givers, to watch over and help mom round the clock. Dad's mostly independent but need some help. With one aid as the "boss" we have a monthly schedule and manage that from her (where I live) and FL where my folks are.

Long story shortened. Mom and dad are doing exceptionally well. Mom had dementia due to a number of small TIAs. When they moved in (I went down to try and make their new home in the new facility, look as much like the old setup as possible), mom asked if this was their new home. I said yes. She smiled and said "oh my, it's so cozy!" It's been 4 months now and they are both doing so much better.

I monitor healthcare from long distance and am fortunate that we've built a great team. I've got such a large number of aids so that everyone can also have their own life, with their families. I work hard to check in several times a week and to make sure they all know I care about them too (the aids). Without their support, I, and mom and dad (as dad now says), would be SOL.:)

You sound like an amazing and caring woman. Do what's necessary to properly care for your mom, which sounds like a move into your home. But, do get the additional support to help you, your family, and your mom. Finding the right Aid(s) is critical. Take time to get to know your first aid, as she/he will be the anchor from which all others will work and support you and your mom.

I hope this helps. Also, make sure you have the right doctors. I'm now in the process of researching new a new GP, one who will respond to questions and follow ups (I'm not a nut case who's all over them but do ask for a phone consultation when necessary - most recently after an overnight hospital stay for my dad when he had a spell).

My best wishes are with you and your mom.
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P.S. Mom wasn't eating at the old facility. With our aids now, she's eating well and feeling much better!
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If you are not getting any responses from talking to director, head nurse, social worker etc at this facility, I would consider going to website for your state health dept and looking up what the procedure is for filing a complaint. Also try to find out if there have been other complaints re: this facility. Mom should be eating and drinking and staff should be concerned about this as you are. There are pills that will improve appetite. Yes, pain needs to be controlled or a person won't want to eat either....and there needs to be other activities and stimulation in between PT. She may need to be in a better facility...or else home with in home physical therapy coming, or you taking her to a therapist, so that the rest of her day can be better managed to keep her all tuned up.
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I would start with the Director of Nursing (intercepting her or him at the very start of the shift is a great idea) and then call your state ombudsman. The NH where my dad is has several CNAs that will sit with a resident for as long as it takes for them to eat. Those kind of aides are the exceptions I assume. (Plus they have other patients that are waiting to eat, got to bed etc.) That said, if you are doing everything you can as far as being there and making your presence known and nothing is changing, then I would consider moving her to a new facility. And if you are fortunate enough to be able to take her home and can get aides to come in and help you with bathing, changing, eating, etc etc then do that. My mom is desperate to take my dad home from his NH (which is actually a pretty good place although far from perfect) but there's no way she can manage every aspect of the care that he needs. Makes me wish I was rich!
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Crickett33,

I noticed that you say your mom is on Namenda, which is to treat moderate dementia. Have you discussed the progression of her dementia with her doctor? Have they prepared you for what to expect? I think I would do that so you might get an idea of how likely it is that a dementia patient rebounds mobility and appetite after sustained decline.

I think I might also have a meeting with her team of care providers at the facility. I would do that to make sure you are all on the same page. If you are expecting her to recover and regain memory, mobility and function and the staff expects her to progress further in decline, it could be a bad situation and cause conflict. Especially with regard to her eating. Losing interest in food is common and weight loss is also common with dementia, even if the patient eats normally, weight loss is not uncommon. After ruling out other causes, I would discuss the options and see what you think she would want. Are you her Healthcare POA? Does she have a Living Will?

Do her therapist think she is making progress? My cousin's doctor said that Medicare would not cover physical therapy if progress is not likely.

If you take her home, is there anyone to provide her with 24/7 care?

I would certainly work towards ensuring that she is not in any pain.
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crickett: I would go as high up the chain of comnand there is at the NH and QUICKLY advise them of your mother's situation! DI NOT WAIT! YOU DON'T WANT THIS PROBLEM TO ESCALATE!
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DO not wait.
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Crickett, I feel so sorry for you. The fact is, many of us have siblings who don't show up. Even at the time of death. Instead all the anger they have bottled up for years will be taken out on you.

I read your post, and I can only tell you, that my Partner took the smoothies and loved them. I also bought baby food, veggies as well as fruits. He loved it. The ice cream also. The last few days, he slept and slept. I was sure it was my fault as I did not trust the drugs. How can anyone stay awake with these drugs they give them? Just one of them would put me out.

I was told to do whatever he wanted. If he wanted a beer, give it to him. If he wanted a steak, use the blender and soften the food so he could eat it.

My Partner had railings on his hospital bed, but he STILL GOT OUT. I figured it out the second time. He was scooting down and getting out at the end of the bed. He had to go to the bathroom and hated his catheter.

To me, it sounds like she is either extremely depressed or is dying. As for her kids, I am ashamed of how kids behave now days. They do not realize that their parent is dying and think they can continue to take their anger on WHATEVER it was that they were hurt by. This is the end, get over it. Go see your parent and love them dearly for the very fact that they brought you into this world.

As for NH, they do not get the best people working in these places. Sometimes, they are short term people. In the case of my brother in law, we found out why we got smiles instead of answers from the help. THEY DID NOT SPEAK ENGLISH. OMG, we could not believe this.

I sure hope you get to the bottom of this problem, but be careful as it sounds to me like you are struggling with your own issues.

God Bless
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I do not understand our lack of quality care for the elderly in this Country. I am 73 and I have savings and retirement and I guard it faithfully. I am on a very tight budget. If no one else will care for me, I will know I have the money to make sure I am cared for. UNLESS of course, I loose my memory and then all bets are off.

I am so sick of people's excuses why parents or loved ones cannot move to where you live. My niece had her dad in a care home near us, so it was up to US to go every single day for years to see him and over see his care. WHAT WAS HER ISSUE? It was her dad, not mine. Of course we were on the place and he got good care. Her reason was that he could not possibly move near her as the altitude would be too hard on him. I talked to our doctor who assured me it would be a thin line, but the quality of his care and being near his daughter far overruled the living so far from his only child left living. After about a week, he would adjust. Not only that but these NH are climate controlled. It it is too cold outside, the heat goes on and it is to hot outside the air goes on. There is NO reason you can give me to not have your loved one living near you. If you are the only one left who cares enough to take care of them, then so be it. DO IT. Your children are learning from you and how you are caring for your loved one. What are you teaching them? I just hope that you can see your way to move your parent home or near you. This is the last days they have. Make them the best.

For your information, my niece is complaining about depression now. She wants no pictures of her father sent to her or even to discuss his loss. She has to face the fact that her once every 6 month visits was not what she owed her father.

PERIOD.
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Oregongirl: Oh yes, it is very common for NH's to hire people who speak Espanol. One time one picked up the phone when I called to ask a question about getting a room available for my Mother and I said "please give the phone to someone who speaks English."
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It is disgusting how our Elderly who worked so hard, fought in our wars, raised families in the way they should be raised have been put aside as junk in many cases. Or should I say, many families are WAITING for the inheritance. Not caring about their family one little bit. It is SO sad how our younger generation has turned toward wealth over love and family. When I was young, families had their elderly at home until the end. And, after they died, their body was in the bedroom of the home for viewing, not some cold mortuary. I remember going into the bedroom to see my grandpa. (all by myself). There was no fear, just curious about my Grandpa. If we had raised our kids like that, they would not think of being afraid of death. And, the greed that is within many of our young people as to who gets what. In my youth, the one who took care of the parent got it all. No one questioned that.
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Cricket, thete are 2 things i would suggest. First buy a urinary tract kit at ur pharmacy. The second is to get a prescription for megase. This will help with her appetite. One other thing, thete usually are visiting doctors who come to you fir care. Talk with her physician for who to contact.
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Agree with tambri42. My mom fell in June, and hasn't been the same since. Not eating, barely drinking. Then realized she had a uti, so we treated that, and then relented and put her on hospice, since she lost so much weight. Then last week, she was really bad. So the next day, I rebounded and got Pedialyte freezer pops, Klondike bars, applesauce, mashed potatoes with real butter, and cool whip. I now give her 4-6 bites every 2 hours. Also mix Boost with choc. milk.

You can't force them to eat. Sometimes you can outsmart them (like when your kids were 2 and wouldn't eat their veggies), but not all the time. The megace might work. Other than that, that's all you can do. She might be ready to go, or may have other issues.
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Cricket, I am so sorry for you to have to face this. But, not eating or drinking is a sign of the end in many cases. I bought baby food. Veggies, fruit etc. I also bought a bullet and ground everything I ate down to a mush for him. He loved it. It had flavor and that was what made him eat. But, give small amounts at a time. Use Jello also. You can buy the pre made jello in small cartons. I tasted the roast I ground down and it was actually really good.

The issue is if they are passing, they are not swallowing easily and may have a lot of phelm in their throat and it can accumulate in their mouth. Get the swabs from hospice I cleared his mouth constantly in the end. With all the phelm, I could not understand how he was even able to breath. I don't think I spelled phelm correctly. Does her breathing sound clear? Toward the end, their breathing is rattled. It is very unnerving and made me anxious. Hang in there and take this time to be with her a special time. Play pleasant music. Only allow visitors that understand she needs peace and quiet.
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I am the sole caretaker for my father. If I were in your situation, I would move her back home and arrange for her to do outpatient PT AFTER she adjusts to the move. Be encouraging and patient. Just be with her and let her gain trust in the constancy of your sanctuary. I'll bet she will be much better after she is with you for a few weeks. If the staff at the home haven't been available to you, you can bet they are much less available to her. Between that lack of care, the trauma of surgery and being in unfamiliar surroundings, it's a wonder she isn't worse off. It will help her to have constancy and someone she trusts nearby.
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Crickett, my 85 year old MIL was hospitalized 16 days ago with 2 spinal fractures (they're not sure at this point why this is occurring -- 6 more have occured since in hospital), kidney failure and congenital heart failure. Her esophagus is spasming and she is very disinterested in food, making every excuse in the book why she isnt't eating. She is currently waiting for a bone biopsy for myeloma and is drinking about 2 sips of Ensure at each meal and eating possibly a couple of spoonfuls of pureed soup with lunch and dinner IF she likes the flavor and her doctor isnt the least concerned about it. So I understand what you are going through. She keeps saying its the hospital food but I've taken her favorite things to her and she wont eat them nor was she eating what I made her before she had to go to the hospital. She slowly lost her appetite over the last 3 months. Before that all she thought about was her next meal or snack or coffee break. I dont know what to do either. I'm not much help, just support. Hugs.
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Tigerdaughter, I am impressed. Would you mind telling me how much you pay for your staff and how you found them? I know that's a very personal question, but since we're anonymous here, perhaps you'd consider letting me know. If I'd been able to do that, my mother would NOT be in a nursing home!
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