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.