I am totally exhausted trying to find a new placement for my sister for the last 4 months-researching, calling, visiting, paperwork, tours etc. Sis has Lewy Body dementia, bi-polar, depression, behaviors that include crying, and being agitated-(according to staff) which I have not seen in the last 4 months since meds were changed. I was told sis told someone to shut up-why is this now in her record as a problem behavior.
I have done my search of prospective places in my area-only 15 out of 150 places met my criteria-4 or 5 rating on Medicare site. Why am I being so picky you ask?
My sister has received horrible care (injuries, unclean, Scabies infection, some one defected in her room and rubbed their dirty bottom on her furniture-No one seemed to know anything about this when I show them the mess and did not clean up for another 2 days, meds ordered without my consent that were discontinued by hospital-I am the medical POA, horrible food and losing weight) at current facility. They are not Medicaid facility but they are the only place that would take her with her "combative history" which is why she was hospitalized back in September-which as I said meds seem to have resolved anger. I want to file complaint with state for injuries, unclean etc. I have photos and description/date of each event but am afraid of more problems for my sister when officials start to investigate this place-I want to get out first then file complaint.
I have called and/or toured the places on my list. I am told internal moves took available bed, there is a wait list for most at 6 months to a year. At one place is 2 years, other places just never call back once they have declined placement with no answer about why-which seems pretty shady/unfair/unreasonable as these are places for Memory care or LTC but they will not accept for unknown reasons-discrimination?
One Memory care place asked if sis is escape seeking-I say no-which is true-Place says due to doors are not locked they will not take due to escape is a characteristic of the disease so they will not take her. Sis would not be able to push an unlocked door open and walk thru with her walker at the same time.
We are out of funds for self pay as places see when they ask for financial-will re-apply for Medicaid asap.
One place told us due to nurse chart info says sis frequently cries they will not take her. Yes, she does cry/whimper but I can get her redirected in a few minutes-I don't think they even try. Most other residents are in wheel chairs-also unattended when puddles of urine are under the chair, asking for food, wandering aimlessly as there are no activities going on for the residents to engage.
Sis decline has been rapid since May of 2019, at this point at 6e out of 7 on the hospice scale and will need 24/7 care every day all day. I wish I could say that I am wonder woman and could do all that is needed for my sister-but I know I am not. I already don't sleep well-wake up tired every single day, migraines, I have not been to a checkup for my self for years due to caregiving for my parents and now my sister. I think my sister would be happier emotionally if she could live with me but that would only be a small piece of all the challenges we would be facing with providing care 24/7.
My parents have home care givers and they have gone thru endless care givers who sleep, come to work sick, won't do what is asked, there was one lady who threatened my dad with an enema when dad would not produce BM when she demanded he do so. So I am not excited about home care options being the answer for my sister. I feel I would need to baby sit the care givers every second.
I told 4 people the day the defecation mess happened-thats right 4 people-I made the mistake here of thinking staff will do the right thing-aid, nurse, social services, a second aid, also housekeeping who cleaned the floor but not the sofa-not to mention the other people that would have been assisting my sister through out the day with dressing, meds, toileting.-one of 6-7 people should have done immediate clean up immediately while we were gone at the dr-we were out of the building for about 2 hours that day. I do not have a mask, gloves, rags, lysol or some other product in my purse to do this kind of clean up. Fecal material can carry all kinds of horrible bacteria and other sources of infections and disease-like Hepatitis. This is negligent on their part-I told staff multiple times-yes this is their job-this is what we are paying for-a clean, safe, and healthy environment.
I regret bringing this up and now feeling like I have to defend my self and what I did nor did not do. I am not a bad person lazy or irresponsible in attempting to provide love, care and comfort to my sister.
There isn't enough good quality care available, period. I don't know of anyone who wouldn't agree with you on that.
What you want is a comfortable and well-run facility; safe but not over-restrictive in its management of risk; with skilled, well-led and professionally committed staff; plenty of stimulation for your sister; prompt attention to her personal and housekeeping needs; a culture that accommodates her and others' challenging behaviours; and all these standards met consistently, day in, day out, without fail; and the service delivered at a cost within Medicaid's allowance.
I'm not saying that any single expectation among those is unreasonable. I subscribe to all of them, I even do my best to play my part.
But when you put them altogether - it is a bit of an ask, as they say, isn't it.
Why didn't you clean her furniture? Wouldn't have taken you ten minutes. A lot less time than to pursue a complaint, and then she wouldn't have had to look at it for two days.
I'm not sure what to suggest, though, as a direction in which to aim.
Babysit the caregivers every second... You don't mean babysit. You mean jump on. What about leading by example, and seeing if that works better?
Don't be offended by this idea, I'm not criticising you for not scrubbing muck off furniture, and I agree it should have been attended to. But until such time as a better option presents itself - aren't small, definite steps like that better than nothing?
Sending good thoughts your way. Please update us with any changes. We are here if you need to vent.
Also in my experience I've found that established, faith-based facilities view the care as a mission. For us they've been more communicative, caring and affordable, even if they aren't the newest, shiniest places.
You may want to consider a camera in her room. Others on this forum have done this, and you will need to check on your state laws first, but this will give you peace of mind and keep the facility on their best behavior. I realize this may sound daunting, especially if you're not "tech savvy", but once you've figured it out, you may have calm waters, at least for a while. Let us know if you make any progress, or just come back here to vent!