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Hi . . .I've just joined as I'm having the worst day. I moved my mother into ALF one year ago from another state as she was alone and seemed "just too old to be alone". She did have what I now understand to be Sundowner's back to 6 years ago. She was hearing music coming from the next door man's apartment and insisted he was doing it to her on purpose. So when she got down here I found her harder than ever to get along with. She was apparently hiding her dementia symptoms pretty well, but was easily agitated and fault finding with me no matter how I tried to pelase her. Yet, she loved the new ALF I moved her into and all the socializing that goes with it. After just a few months she started having physical issues (polymyalgia rheumatica) and was hospitalized. Had sundowners in the hospital due to their mistake in taking her off 40 mg. paxil for four days which added to the sundowning issue. She subsequently was hospitalized again and then moved upstairs to the ALF (from independent living). She also has atrial fib and congestive heart failure. Put on coumadin and nurses at ALF forgot to do blood work ordered by dr. for three weeks and her #s went up to 8-9. She could have bled to death. After a 10 day hosp. and rehab stay, she returned to ALF but generally worse than she was and much more confusion. W/in a week back to hospital with poss. pneumonia, then another few day stay . . . and she keeps getting dementia worse. Dr. puts her on Levoquin (sp) an antibiotic, and she has leg swelling so is allergic; he then puts her on too high a dose of pred., 20 mg., and she gets psychotic til it gets out of her system. While on pred. wandered away from facility. Now it's several days to clear the pred out and her sugar goes very low cause of this and she's very agitated. Whew. There's more.

One day a couple months ago, one of the CNA's comes in with her regular med in her own hand and passes it to my mother's hand, walks away and (I'm watching all this) my mom pops them in her mouth and two fell on the sheets of the bed. I went down to tell head nurse and I haven't seen this happen again.

A week ago I found out about Hospice support care and because of her heart failure condition, etc. they have put her on hospice care. Then one of the CNA's from the ALF mistakenly gave her percacet last Friday along with Xanax which she's not use to and mom was loopy the entire day. I stayed there all day with her. The following morning I call her adn the nurse answered and said she couldn't get up from sitting and her blood pressure 180/90 (getting near a stroke situation) so I go over, hospice nurse shows up and orders continuous 24/7 care which will end tomorrow as mom is now doing better, but they will continue some day visits and hospice will control medical stuff.

This afternoon the usual visiting hospice nurse speaks to me that perhaps I should only come 1 to 2 times a week as mom seems to get agitated with too many people around her, blah blah blah. I explained that she near bled to death a month ago because "someone" forgot to do blood tests on her coumadin. She said come whenever you want but 1=2 days is good so she's not expecting you to be there at her command every day blah blah blah.

Because of all the medical mistakes I have seen happen I am reluctant to not show up enough "just in case" I see symptoms that need attention. I'm very polite with the nursing staff and try to stay out of their way. So I don't know if it was this one particular hospice nurse's opinion or the other nurses preferring family not be around. My mom has her own apartment which is very nice and I really like the place, but gee whiz, they could have killed her with the coumadin issues. I really feel offended being told to come 1-2 times a week. Who are they to tell me what amount of time I should see my mother. Nobody else in the family will bother with my mother now, but me. I don't want her to feel that I've abandoned her also. I should point out that she's always been very manipulative, demanding and can drain just about anybody. Maybe the nurse was trying to help me out in the long run. She said there are so many people looking out for her and not to worry. Well, gee, I caught some serious mistakes that should not have happened.

I don't know what to think, or how to feel, or whether to speak up and tell the new male Director of Nursing who is very nice and always talking with me, or just keep my mouth shut and visit when I want and limit the time somewhat so I don't go nuts with all of this. I have the records where it shows PT/INR blood work on coumadin not done. Maybe he should know, or maybe he already knows and that's why he's so nice to me, or maybe I shouldn't bring it up.

Glad to find this group and thank you for reading this and any thoughts or advice you may have.

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Take notes, times and dates. Keep records find out the DON name and speak to him/her about concerns. If nothing changes, bring up their state inspection, Medicaid credentials. All NH and AL facility must comply with Medicaid regulations and Medicaid is constantly looking for reasons to not pay. Granted we were self pay, it doesn't matter. Be firm, start out polite of course but assertive. Good luck
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You mother is in assisted living so you are most likely private pay so it is very odd that they are already making comments like that.I believe you would be wise to move her while she is still in good health.Those places rarely get better with time.Get her in a comfortable and competent place while you still have money.It gets REAL bad once you end up in a nursing home,run out of money,go on medicaid,and her health starts to get worse.I kept my mother at home as long as possible (she was late stage alzheimers),moved her to a five star rated nursing home (I toured at least 20 of them)after a stroke and needing a feeding tube but ended up in a situation where I could not move my mother back home or to another place.It started to go downhill rapidly once she went on medicaid after five months of private pay ($8300 per month). I spent 40 plus hours there a week myself and had private caregivers with her when I wasn't.Yes,nursing homes have become that bad.The incompetence was breathtaking. They hated me and my caregivers with a passion and made our lives a living hell.It ended up badly for my mother nonetheless.She lasted about two more years.They know every trick in the book.BTW : I paid for the caregivers out of my retirement account because mom was worth every penny of the private hire protection.She would of done it for me............
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I visit my mom in Assisted Living almost every single day. Usually I stop by on my way home from work for 1/2 hour or so. I check on things and write out her reminders for the next day. On weekends I take her out to lunch because she LOVES to get out, and maybe one store. She is very emotionally needy since my dad passed away one year ago. Why should I not go???

I have been criticized for this!!! I have not been told not to come; but I have been criticized. Well this is MY mother and I can see her as often as I wish. I think the people who should be criticized are the people who dump their folks into a 'home' and then never show up maybe a few times a year.

A few years ago when my dad was in a Nursing Home for Rehab, I was the squeaky wheel and learned you HAVE to be. They were indavertently over-medicating him; not watching for his reactions. I showed up one weekend (this was before I moved them up here near me) and he was in a fetal position, barely responsive. I DEMANDED he be brought to the hospital. Called his doc; he was admitted -- dehydrated, beginnings of pneumonia. If I had NOT showed up, he would have died then. As it turned out, he lived well for five more years.
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I spent a total of almost four years caring for my folks in a local nursing home (rated 5 stars) and about the same prior amount at home.My goal was to keep them at home with me as long as possible but that did not work out because of serious medical issues,dementia,lack of family support.My advise to you is never let a facility try to drive you away from your loved one.Most places don't want you around because you get to see too much (mostly bad stuff) and maybe report them to the state or worse yet take some legal action where they could get their rating lowered or Medicare/Medicaid certification pulled.Even the best places are one mistake after another and you need eyes in the back of your head to try to advocate what is best for mom and dad among people who are very overworked and underpaid.Usually the aids and nurses try their best but the administration treats most of them as disposable because many are looking for work these days and will take anything even if their heart isn't in it.A lot of the good ones are long gone from nursing homes and do home care instead.If your loved one is on Medicare or Medicaid (I paid for my folks PPO out of my pocket) read every statement,esp.Medicare D monthly so you can keep a eye on the all the stunts nursing homes are playing with charges going to the taxpayers.You will be shocked and understand clearly why the system is going broke.They are making up for Medicare/Medicade cutbacks by pumping them full of unnecessary drugs,trips to the hospital,unnessary tests,in house procedures,skilled nursing rehab days,etc,etc - the list of tricks is endless.Don't believe they are not making a profit.The most pathetic issue is the old folks become nothing but cash generators for the board members and stockholders of these corporations.After they are done pumping them dry many advocates are advised to "put them on hospice" and they are gone soon after.The system needs a total rework asap.
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Visit your mother as often as you can. Never let anyone tell you how much time you can spend with her. You only have one mother.Believe me, she looks forward to your visit, even though she may not act like it.
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My 2 cents~ visit your mom when you want, and be aware of making her upset. Visit for her benefit; not yours.
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If she is on hospice, the focus is probably on comfort measures, not measures to extend her life. Have you been given an orientation about hospice? Read the literature?

I don't know why you'd be asked to visit less often. Perhaps it is (or the nurse believes it is) in your mother's best interest. Do your visits agitate her? Could you try skipping a day or two and seeing what changes, if anything? I'm pretty sure the nurse means well, and has a lot of experience. I think it is worth trying things her way. But ultimately it is your mother and your decision about what is best for her and for you.

It was defintiely a serious mistake to forget to take your mother's bloodwork. But your being there did not prevent it, nor did it prevent the other serious medicine mistakes, except the one where Mom dropped her pills. Even if you are there 24/7, you cannot anticipate and control the actions of the staff and medical professionals. Mistakes can still be made.

If you call and mom is in a bad state you can always go in and stay with her.

As I know from the times my mother has been hospitalized, it is very hard not to be in charge of a loved one's care, and to have to trust to professionals, especially when you see that professionals make mistakes. It is frustrating and scary and you do need to be a good advocate for your mom. Whether it takes you being there every day to be a good advocate is the question. I wish you all the best as you struggle to answer it.
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