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Oh ligtedpumken, your plate is way too full. Concentrate on your own recovery, and call the nurses in ICU daily to get updates. Ask them if it is time for Hospice, then have a good cry, I know I would. It's time for someone to help YOU, you have carried the cross too long. Godspeed.
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I understand how you are feeling and I am sorry that your Mom has been mistreated. My Mom had a stroke at 81 and I was diagnosed with breast cancer, have been going through all the treatments and am on meds that weaken my body. Since my Mom will never walk again, I would take her in the wheel chair and walk with her, but that became too hard for me since they removed lymph nodes and I had pain. She has become quite heavy since she is not moving around. I feel helpless at times as I do not know what to expect when I walk in the room. Seems like she has a different personality every time. I know she has lost her reasoning skills due to the stroke and is unaware of what is really going on around her. She is kept clean and dressed every day. I wish I could fix for you since I know all too well what cancer does to your body and the added stress does not help. The reality of it is that I would be totally physically incapable of taking care of my Mom and I have to resign myself to the fact that she is in the best place right now even if it does not meet my expectations. Take one day at a time, and please take care of yourself. You will be rewarded one day for taking such good care of your Mom,
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We used several different facilities over the course of my parents' last years, and though they were mainly good, carefully pre-screened and personally visited, every single one made some mistakes - most caught before much harm done. Mainly it was med errors, someone re-starting the drug that had caused a problem before or stopping one that should not have been stopped. And I got labeled an intrusive busybody or worse, I'm sure. I had the exact same experience of seeing my mom get yelled at by a physical therapist when she was scared and in pain post op from her knee, plus could not hear instructions real well, and almost got myself thrown out for trying to let them know that she wasn't just being stupid...later on, at our last stab at serious rehab, she also became unresponsive and no one was reacting appropriately. I ended up stating loudly (really - I did NOT yell!) that "HEY! There is something wrong with my mom!" and they actually called a code...the problem was she had actually had an acute stroke, and extension of her previous ones, and was aphasic after that. We got back to rehab, but progress was limited, so it was back to a post-acute facility...and while there, they tried to get me to OK going to a geropsych when she was calling out and confused, but they actually did respect me enough to listen and get her to the ER instead; this time it was a second acute MI. They treated Mom really well at that particular ER, and probably not coincidentally, made it a point to tell me what was going on and answer my questions. I never got yelled at for staying by her side or trying to help with care the way I did at some other places.

Do your best to stay on top of meds - this is tough, even with a HIPAA they will not really want to bother calling you with every med change, though if you are assertive enough, you can probably get it done (I still say, get them to print out the list every now and then though...) And if only every professional and every facility could develop a culture or respect and listening to patients and families as partners, most imperfections and mistakes in care would be quickly caught and recognized, though probably not eliminated entirely. Just my $0.02.
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I'm at least grateful that the hospital where we take Edna has a new program in place, called "open records" .. it's a daily printout of all her meds, vitals and any tests that may have been taken. I insist on them. They also recognize that one person can be consulted for decisions, but there are three of us who are to be kept intimately informed of all changes. It's a step in the right direction .. but this is an acute hospital. Hard to get the same result from the SNF. It was like pulling teeth. But, also with HIPAA there's supposed to be more transparency.
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Also .. I think it's vital that the family/caregivers actually STAND as an advocate for the patient. Generally, they do know a lot more about their history and typical responses. We had the situation, last time, where Edna was obviously having difficulty swallowing. The SNF staff tried to attribute it to 'pocketing her food.' Uh .. NO .. watch her eat, she holds it and when she finally gets the courage to swallow you'd see her grimace in pain. The staff claimed that they looked down her throat, and that she wasn't eating because she was depressed; but three days later (???!!!) the doctor examined her and her response was, "WHO looked in her throat??" It was covered in thrush ulcers. Grrrrrrr .. so PUSH when you know better.
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I work in a nursing home....not a nurse or aid..a receptionist...but, I can tell you that where I work, the patient is the most important person in the place. Here is the answer ... EXPENSIVE. Most people have to find a home they can afford. I cannot afford to put my mother where I work...had her in a home that was medicade only....she was there 2 days and we went to get her out. I saw aids talking in groups and on their phones when looking for someone to take my mother to the bathroom. Where I work, if someone needs to go potty or to be changed, its done within 10 minutes or less. I have seen our CEO do this chore herself if it wasnt fast enough. If I have a patient in the area I work and they ask me for something, I notify the nurse station and someone is there to help immediately. The CEO is a tyrant and although we run through hoops, we know what we have to do to make sure the patient is taken care of. There is quite a difference between a non-profit and a for-profit home. It isnt fair that they are not all the same. In this instance I feel you get what you pay for. When the employees are paid what they are worth the care is better...when you have KIDS as aids, you get KIDS. I am so sorry you are going thru this and so sorry that most people cannot afford the kind of care I see in my job. No one can do it all for their parents, especially when parents are 90 and the kids or in their 70's. One of my younger sisters quit her job to take care of mom and dad and she is paid well for it..but she cannot be there 24-7 ... the answer is to pay the family member thru the government to stay with their loved ones. That is never going to happen because of the excessive $$$$ made in this business. I am talking $8,000 to 10,000 a month at the nursing home I work. There are no answers unless you are extremely wealthy and have all the time in the world to give to your loved ones while going downhill yourself...Home care 24-7 is just as bad and trusting issues are excessive....No answers... we do the best we can.
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SandyC, I used to think like you as a teenager, and thought if my Mom didnt know me, she wouldnt know the difference if she was in a NH. Well here I am a senior citizen and I must tell you, they need us even more when they don't know us. The need touch, encouragement, stories only we can tell them, and the feeling of love and security. My Mom hasnt known me for over 3 years, she is in my home, cant walk or talk, and I spoil her rotten daily. Think about this, sometimes they dont know you, sometimes they cant express it, either way, its still your parent. Good luck to you
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Call your county or state office on aging (they may go by some other name), they can refer you to an advocate for patients in nursing homes who have problems with the nursing home. There is also legal aid for the elderly, check with these agencies. Good luck.
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So tonight my dad moved from the hospital to a nursing home 5 mins from my house so I can go during all meals to feed him since the staff won't & make a round trip home to care for myself. Problem is he left the hospital much much sicker for this nursing home than he was when his last NH sent him to the ER. I cannot understand that. He is swollen all over. Still has shallow breathing. And the clinker - after telling me this morning that the hosp. was sending out all the referrals to the NHs I asked for when the closest one accepted him they were happy to send him out there same evening even though the place did not have any of the meds he desperately needed tonight. He will skip much needed antibiotics for tonight until tomorrow. And the MD as DC orders had ordered the wound vac they ordered & sent the wrong wound vac so the hospital did not even ask the facility if they were ready tonight to meet his medication & equipment needs & just sent him over. He still cannot raise the cup of water to his own lips & yet the discharging md discontinued iv fluids so along with all the swelling & pneumonia & breathing problems he will also now be dehydrated. I went up there & fed him applesauce, a cup of pudding & got him to drink about 4 oz. of water. He was so exhausted from the ambulance ride his breathing was very shallow. I stayed from 9-10 pm. I asked the nurse leaving at 10 pm when he would receive his night time antiobiotic & his topical antibiotic cream & she said not until tomorrow. I haven't even had time to order it because I had a hallway full of patients to take care of. When I left dad was breathing very shallow. Not good. I hope he makes it through until morning. They only decided to dc him this morning & he was on a bus somewhere that couldn't meet his needs. They should have waited til morning at least. Worst thing is this place only takes medicare rehab so even though I could benefit from him being 5 mins away the rest of his life, he will have to move again whenever they decide he can't be there anymore & I will have to find him a new nursing home, like I said before I might just take him home at that point so he isn't further away. I cannot get over sending him back out sicker than when he needed the ER & not having meds or equipment ready. If they care so little then he prolly won't get them tomorrow either.
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My dad, at 91, has been with me for 4 years, but now, after a fall, we are unable to transfer him from bed to chair, etc without 2 people, and that is a job. He needs a wheelchair all of the time, now, so I have researched and visited everywhere and found what I hope will be a competent placement for him. It is very sad to me, but I am hoping if he is responsible for his own mobility he will become stronger and more independent. I will spend a lot of time with him and hope he, too, will help by staying in the bed at night, and trying to help himself more. He has been taken care of for every single need. I may have created a monster! There just comes a time when the lifestyle that the caregiver would like is just no longer possible in the home. Then, we do the very best we can. It is so so tough! I'm hoping I can get through this new time in my life and am hoping, also, that family members will help in the transition.
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You know I hear often that the fiercest advocates for their parents get a bad rep/rap from the facilities. I have had many different reactions at differing NHs over the years with mom & dad & I have to say that the ones that were better rated by the state & the ones caring for them better (not always the same places) complained about me as much. They were actually grateful to have a family member that advocated so strongly because they had many patients & the front line caregivers unfortunately do not call all the shots affecting the patients. Because it is all about money now, many decisions are made at an offsite corp. office, handed down to the admin, then to the DON & even if the LVN used to the patient is thinking it isn't best they do not want to lose their jobs or be labeled as a troublemaker so they have to follow orders. The better places are almost always happy to have me visiting & advocating. Then there are the other places I had to take after a hospitalization that was lower rated & mom was in them about 2 weeks at the most because they were so horrible she would end up back in the ER due to lack of care but during those short horrible stays I would & mom would be spoken to so rudely & treated like we were from the CIA or the state or something when all we wanted was for someone to come suction her so she could be comf. or come witness a med patch that didn't belong on her & was on her allergy list but ordered for another patient. I had several care plan meetings called to discuss that I cannot be walking into a facility waving a POA paper & being demanding to the staff. Only at the lower rated places. I can assure you my demeanor & manner of speaking did not change from place to place. So what we have here is the better places have staff that care & want to do their best so they love you being there helping out. Then we have the other places from hell that would rather sit & chat amongst themselves & when a family member is in the building they cannot get away with this lack of care (like after 5 while the offices are gone home) so they make you so miserable to be there that you will stay home then if the patient dies or goes to ER at least they didn't have to work while on the clock. I mean after all they did work hard at making sure their shift was after all office staff was out of the building & all supervisory staff & doctors were out of building so that they could sit back & here is this family member that only visits then. Gotta get rid of that one. Well anyway after mom's next ER trip because of lack of care she went to the home that wanted me any hour I would be there & every hour I would be there & followed every POA order ever given even not to send out to hospital, complete DNR, we had a good mutual relationship. Then she died comfortably in her bed right there. It was perfect. But again there are bad places & when they are all difficult to work with in that building, do not try a better relationship with the staff because if they were any good they would already be treating you as POA better & the patient better. None of us are that different. Really. It is the buildings that are different.
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I also wish that people understood that however the staff is treating you as child of patient, they ARE treating that patient that way while you are not there regardless of how they are treating them in front of you while visiting. People just do not change their manner or personality from moment to moment. If they are like that to you & you are not being rude, they are probably unkind to the patient. I hate to say that but it is true & there are better places. Although they will have pretty full beds if they are better if you get on a waitlist or call frequently there are better NHs that will take the same insurances. It isn't a complete loss just because only the expensive homes are better. Every once in a while you can luck out. I will tell you one thing I have learned. Pick a hospital. Any hospital that isn't too long of a drive from your house & would be really good to your patient. Next time your patient goes to a nursing home. Ask for them to only be sent to that hospital. Every time. So that the hospitalists that treated them are the same ones they would call every time your patient hits the ER whether your called or not. It won't always work because sometimes the md won't call them back quick enough, it really helps if you have an infectious dis. doc as consult, theyll call the er back & mom'll be back to the nh in short order or admitted but consistency of care. Better yet. Pick a hospital that the NHs you like would want future patients from. Get it. Even if your patient doesn't have the NHs fav. insurance they will take mom from that hosp. so they can get the future 100 day patients from those placement people at that hospital. These NHs come up on a rotation on the pc for all placement social workers. So if the NH you want rejects your mom - they won't get the next patient from that hospital that does have the 100 days of skilled every NH wants. So even though that hospital may not be the very closest to that NH if it is in a better neighborhood or is a very large regular medical hospital & fairly new & sends out more stable patients with a hundred days the NH you want may accept mom even on nursing home medicaid (approved) so they can get the next 5 patients from that same hosp. that have a 100 days. That's what got mom in the better one that she died in. It was like winning the lottery. Now sometimes they can't at a NH send a patient to the next closest hospital esp after 5 when no one working cares to check the chart but it really helps to get them to return to the same ER everytime. Really saves the patient from unnecessary treatments that may cause more harm than good. But remember pick your fav NH you would like them to go to, make sure they take your kind of long term ins. & have a small amount of space for them, then pick a few closest hospitals. Go & check them out the hosp. then ask around. How old is the hospital. Then go to current NH & ask to put an order in the chart when possible send mom to SO & SO hospital. You may not win out but it is certainly a better shot than nothing. And plus she goes to a decent hosp. rather than the closest smallest potluck hospital.
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I always wonder what the right answer is when it comes to caring for alzheimer's. In some cases the person does better in a building for social reasons. In some cases they fare better at home because the caregiver is the same, consistent caregiver round the clock rather than a diff. one m-f & s-s & 3 diff. ones each day for shifts. It is hard to deny though that 1 on 1 would be better for anyone needing round the clock care. I am not so sure that outside of hospitalization that someone needing care around the clock wouldn't do better with 1 on 1 in their own family rather than 1 carer to 20, 30 or 40 patients just because that 1 on 20 was clinically trained. Depending on the level of clinical health of the patient it is hard to fight the logic of 1 on 1 care with a consistent loving and family caregiver. So maybe the issue actually is what health & stage the patient is in. For instance does a very mild alzheimer's independent patient really need to be at home with 1 on 1 or would they fare well in a 1 on 20 where they had activities & group meals but then when their alzhiemer's makes them less mobile & social wouldn't it be better then to be at home 1 on 1 especially if bed bound with someone coming in 2 or 3 days a week on medicare to help with supplies, meds & transfers out of bed for the purpose of the skin & range of motion since that is the most isolating of the stages & immobilizing of the stages. Rather than the other way around where we keep them home while it's easier to care then later put them in when they are bed bound & at the mercy of staff sharing them with 20, 30 or 40 patients because what are they doing those other hours no staff is in the room? They are not only laying there in a bubble but are also quiet, bored & lonely. I don't know. I just can't imagine leaving someone bed bound or hoyer lift in a care home when I could bed bathe them & feed them at home but I would institutionalize them when they could find friends in there while out of room. I have bed bathed my mother nightly in a nursing home, although she was 98 pounds & gone now. My dad is 200 pounds I would not outside support to bed bathe him that came in. Hospice at that bed bound stage in the home is prolly best.
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If you can provide the care at home 24-7-365 & one on one it would be nicer for the patient but would you have any respite care at all because the outside support doesn't let you leave or rest they just are there for necessary care & hospice or bed-bound it would be really hard to get a respite sitting agency at that care level for an hour or 2, so what is the answer here? I do think instead of trying to find the cause of alz or finding a cure which is not effective in the now, we need as a country or universe to find a financially effective & compassionate way to HOUSE & care for alzheimer's. I still can't believe it wouldn't be cheaper to provide support to a home caregiver than to pay for these NHs the way they do per year. I really think it is info, education & financing for these affected elderly not cures which only funds the pharmaceutical & healthcare industry. There are still way way too many people in the community that know absolutely nothing about caring for alzheimer's what each alz is like, what care homes are like, what funding for care is like. You wouldn't believe how ignorant people are about what restraints are available to NHs, that alzheimer's is actually fatal. I find that one interesting. I have had many people ask me what do you mean she died of alzheimer's. I thought they were just trouble for many years, like mean, evil, and a danger to themselves but went on at that stage for many years & died from other natural causes. Instead of fueling a cure that may never come & giving drug & research comp. money lets educate the neighbors, the relatives, maybe even the schools. Most especially only us on the firing line know about the NH community & how to avoid the land mines. We learn by being shot. Why not at least save another elder nursing home abuse by educating the community about how to avoid the bad ones or support them like with meals on wheels & comm services to keep the person at home. I think everyone would be surprised how many ppl out there do not know about alz.
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Lynn1950, medicare will give you a free hoyer to move your Dad. I have had one a year now and love it. You can go on care dot com for help at home, just use his ss for it to give you a break. If you move him now at 91, he will go right down hill, thats what always happens. Good luck, stinks to get old, omg so sad.
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I agree lightedpumken nursing homes should be shut down especially residential homes. They do not care. they are a scam
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There are good nursing homes for the top 1% but most of us are not part of that group and neither are our parents that we love. So you do your best to care for them without placing them in a nursing home and if your need to place them then you just do. I found locally some of the religious based and veteran homes to care more about the elder. Not perfect and not as good as care in the home but care is decent and respectful. Corporate outfits providing care want to provide as little care as possible to max out their profit margin. As an adult child, you have one set of goals for your elderly parent, but it isn't their parent--- and therefore their eyes are always, always on the bottom line for profit. It will always end with the caregiving child being upset and frustrated.
But again we do the best we can with the financial hand we are dealt.
I hope you can find a suitable nursing home if your parent can not come home.
Pray on it, as I asked God to guide me through the caregiving of my parents and he did. I wish you peace as you handle this situation as I know it breaks a child's heart.
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I find Lizzie's comment an insult to all of the good institutions, and all those who work long and hard in long-term care.
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The last one we used was 'good' .. five star rated by family members, as well as by medicare standards. The non-nursing staff was warm, friendly, attentive, actually listened to the family members and, indeed, worked very hard. I'll bite my tongue about the RNs. They had nice programs in place.

And we'll never go again. Why? Because aside from bed and personal care, one hour of PT a day, one hour of some sort of activity and meals, she would have spent the balance of her time in her wheelchair, sitting outside her room in the hallway, if her caregivers hadn't spent the entire day there.

Not to mention the germs that run rampant in a facility, despite (or maybe because of) all attempts to keep the place clean (and they did). And, it's simply not possible to provide the same level of care in a facility that can be given one-on-one in the home.

Edna's daughter called them a parking lot. She wasn't far from wrong.
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I know it is common practice to line up patients in wheelchairs in front of the nurse's station to keep an eye on them. However, upper aged patients 85+ years of age are not comfortable sitting hours on end in one position in front of the nurse's station. I think this practice results from understaffing and not having enough staff to move the patient in and out of bed, a more comfortable chair in their room (not to mention getting them cleaned and back and forth to the bathroom). However, with enough staff(home health aide) at home, the patient can receive better care and then you are faced with surrounding your home with the PT,OT and other medical service people in the home. It can be done but it is a large undertaking not for the faint of heart.
There are times when given the hand the patient and the family are dealt they need to find the best nursing home, knowing it will not be near (anywhere near) perfect but you do what you can. We need a whole new way of supporting elderly patients at home, where most wish to be.
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Maybe jenjiks I came across strong but I do have my reasons to think this way.
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"However, upper aged patients 85+ years of age are not comfortable sitting hours on end in one position in front of the nurse's station."

I know this sounds pretty snide, but .. ya think?? NO one should sit in the same position for more than two hours. It's one of those 'duh' moments: the human body is intended for movement. More than two hours (the most common timeframe used by nursing staff to 'turn' a patient to prevent bed sores) is unhealthly .. for anyone, of any age, and FAR worse in the elderly who are at risk of embolisms and strokes. Even airlines have figured out that long flights, and sitting in the same position for too long carries risks.

And, yes, the point is: they're woefully understaffed, even if all the 'work' gets done. The bottom line is: care for the elderly .. both for the support of those who choose to remain at home and for those who choose a facility .. is gross neglect. It also feels like beating your own head against a cement wall.
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I am so sorry. My grandmother died in a nursing home due to neglect. I feel your anger. I now care for my other grandmother because no one else will. Your being amazing and I think you dont hear it enough.
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My mum has passed away in hospital
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And the hospital are very angry with the home she stayed at. If I had not intervened we are convinced she would have been left to die in nasty conditions.
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Im going to say this as nicely as I can: People DO NOT behave the same infront of someone watching as they do when no one is looking. A camera's location was changed in one of my workplaces and let me tell you... people are not right.
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Lizzie I am so sorry you have lost your mum! I hope it was a blessing to be able to be there for her and to have her in better conditions and cared for, and I hope there are memories from better times and love and support from others to ease your heartaches in days to come...hugs!
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Lizzie, I have been following your story from the beginning. Your mom hid many things from you..I dont think she meant to be difficult but, I do think she knew what was coming...I hope you find peace because you were a very concerned daughter...you did what you could do. RIP Lizzie's mom
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maybe she did hummingbird but going into a home was not the answer I agree with her GP and Consultant it was not the answer in fact when she needed attention they did not provide it and I would never vountarily go in those places. I know you work in a care home and yours is possibly good no doubt. prior to her doing this we were close. Although she had an eye operation in 2011 one of her predictions always was if she started to go blind. Then that would be it... Things changed after that.

I am aware that some know when they are dying.... doctors have confirmed this. My mum was independent to being ill and that is something she would have always wanted and I am pleased about that.
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the home she stayed at have tried to cause me trouble. solicitor has told them to leave me alone.
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