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I have been following this forum for about 18 months. Some sad stories but most answers seem to be heartfelt. I am trying to differentiate between what is truly important and what is less so. Mom is in AL. Later stage dementia. Incontinent. My concentration is her safety, dignified treatment, decent food, and pain minimization. I have found that medical/health communication from the AL is lacking unless I press for it. Briefly, what should be the top items on my advocate list?

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1 - pain management
2 - safety
3 - cleanliness
4 - is she eating
5 - that's all you need to worry about forget having 10 items just do the 4
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IMHO, the priorities that you should be thinking about are 'what is best for MY mom?' because every individual is going to differ.💞💞
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WV son,

Ive been doing this for awhile from far away. I try to stay in touch with the folks at the assisted living place where my dad lives. I’m on my way to see him now. Mom dies over a year ago and dad is in memory care at the same facility.

These places are are not perfect, have high turnover, understaffed and so on. But I have found a few nurses and aides that have hung around. They are my lifeline for dad. It doesn’t hurt to send in pizzas and donuts occasionally with my name on them.

As for priorities it’s just common sense. Is the elder dressed? Clean? Smelly? Haircut, toenails cut? Shaved? With my dad we’re good on this stuff. But he loses clothes, pictures I bring him, people leave clothes in his room....But I don’t give a #&$@. I’m glad they keep him dressed in clean clothes even though they may not belong to him. Don’t sweat the small stuff.
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An AL does not keep you up on her care. Its not like a LTC facility. And as my daughter says, they will fall. An aide could turn their back for a second and the person falls. First, staff is small in an AL. My Moms had 39 residents so one RN, one LPN, med techs and aides. They can't be everywhere all the time.

An AL evaluates to determine what level of care a resident will need. My Moms had no doctor associated with it. The RN was given a prescription from Moms Dr. for her meds. Moms care was in her PCP hands. All the RN did was carry out his orders and changes of meds he made. We had to use their pharmacy. Every 3 months there was a "care meeting" where Mom things were discussed about her level of care and if she needed more. Diagnosis or prognosis are not done on the AL level. Residents should be aware of these things before coming in. The only thing I received a call about would be if Mom fell. By law family members have to be called when there is a fall, a bruise is found, a skin tear. I was there regularly and would ask questions.
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First and foremost is her safety. She needs to be where they treat her with kindness and that her safety is always top priority. If you have power of attorney for her make certain that know that you want to be kept appraised of her condition, what the full diagnosis is and the future prognosis and then you would like to be able to talk with them about what their recommendations are for her on going care.
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I was lucky, I had a daughter who was an RN in rehab/LTC facilities. I would ask her what should I complain about. She explained to me what a CNA has to do given a certain length of time. Eye opener. One example. I found Mom without a bra more than once. She needed to wear one because she broke out inca yeast type rash that took a while to clear up. Better to prevent by wearing a bra. My daughter asked where the bras were kept. In the drawer with her socks...that was the problem. CNAs dress from the top down. By the time they get to the sock drawer, she is dressed. I always hung her tops and pants together. So I added a bra.

It really helps to know how things work. You are now on the facilities schedule. You have to adjust to that not them to you. Be nice to the staff, they are more willing to go out of their way for u. Never demand. Always approach with a question? I notice Mom has a big bruise on her arm. You may get, sorry we didn't have a chance to call you. She hit it on the table. Remember, ur Mom is one of many residents. Some needing more care. You can always look at records. Last med pass, last time she bathed, weight taken.
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Being clean is utmost important, I am your mother. Diaper rash, pressure sores, pressure sores anywhere flare up quickly, and can take months to clear. UTI, are preventable, more liquid, which means, wetter diapers, which means she needs to have more diapers changed. APRI 4 diapers, I think it's what theyre called, absorb a lot, just in case they cannot get to her on time.
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At the point when she becomes incontinent make sure they toilet her every 2 hours. To me that’s a priority.
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As said previously, maybe needs facility with higher level of care. If incontinent, it is imperative she be cleaned up quickly and regularly to prevent skin break out and infections. Your concentrated efforts are part of daily living for any human being and there should be an expectation at ANY facility to have these same goals. You should not have to ask for this level of care - it should be their goal, too.

Unfortunately, those who cannot communicate their needs (when an advocate is not around) get put on the back burner and this is totally unacceptable. Due to dementia issues, there can be an underlying UTI that facilities fail to pay attention to because they see her as 'not normal' already. For non-dementia patients it is a little faster to identify this problem when they begin saying or doing things that are not the norm for them. So I would add some urine tests to the list of things to ask for if she seems a little worse off than she had been...or just to check. Bladder infections are no fun and she may not be able to express a problem exists.
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It sounds like your mother needs a higher level of care than AL. Time for a memory unit or a nursing home. If her AL does not have higher care levels available, it's time to be shopping for another facility.
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My aunt was never in AL.  She went from 7 years here with us and hired caregivers, to nursing care.  Our priorities, besides keeping her clean and comfortable, were for respect.  She (and we) hated the NH where she got over 3 weeks PT.  I pulled her out, expecting to hire an RN and hospice here at home, but a bed became available at a nearby Memory facility.  They put up pictures by her door that I had enlarged as her as an RN, and as a Captain in the Army during 2 wars. I wish I'd put her in there earlier.  She loved it, and was happy for 5 weeks.  Then she got pneumonia for a week before passing away there in comfort care.  I showed up at a variety of times, stayed 10 hours till she died on her last day, and was so impressed with everyone. 
Good luck and big hugs to you!
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The important thing is making the right decision....nursing home care is 24 hrs a day.... cleanliness, attention, proper eating, and people who will take care of incontinent issues and clean up....I painfully had to turn to nursing home care because it nearly killed me....the nightmare stories about these places can be very real... I popped in a lot... diff times and made sure cleanliness was a priority and not sitting in a mess... when things were not right there I didn’t hesitate notifying health and human services and an unexpected visit was always made to the dismay of the staff....I told them this was my mom and things better not get out of control...don’t tell me staff is short and overworked... hire more competent people....and I was a pain in butt but believe me things were done right....u have to fight and be heard... good luck....
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Your mom is fortunate to have you. I think AL varies by state and facility. My folks are in a graduated care facility (now in memory care and skilled care). When they were in AL it was staffed by an RN and two aides. My folks did still see their own docs then, but if anything significant happened (e.g. a fall, an illness, an observable change in status, etc.) the AL staff would let me know. I do notice a significant uptick in communication from the staff at skilled and memory care, as has been mentioned by other folks. You mention that if you “press for it” you do get medical information. Sometimes, once a facility begins to understand what information you want to receive, they may get better about providing it more spontaneously. I’d like to think they are not trying to keep anything from you, just getting to know your desires. Keep pressing for the information you desire. And as others have mentioned, you definitely have the priorities covered. Wishing you the best on this difficult journey.
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Assisted living doesn't really have medical-health communication. Some Assisted Living places have contracts with one of more Doctor groups, and there are scheduled visits to do things for a person, say blood tests, blood pressure, etc. But over all assisted living places for the most part deliver medications as prescribed by the person's own doctors. These people are not licensed nurses usually, but are med techs, trained to safely administer medications as prescribed by the person's doctor. The patient then will see his or her own doctor for any wellness needs and checks, and the person who is Medical POA would be informed of any medical concerns.
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Is your mom eligible for Hospice? If so you will have a medical team that will see her several times a week and will keep you up to date on how she is doing. A Nurse will come once a week, unless needed more often. A CNA will be there at least twice a week. You will have a Social Worker assigned as well as a Chaplain if you so choose. All of these are part of a team that share information and will be more than happy to include you.
I agree safety is a priority as is keeping her comfortable.
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I would say that medical, yes, is not their priority. That falls under her own physicians, their orders, and the administration of medications ordered by the MDs. There is really little of physical assessment, physical therapy, and etc. in Assisted Living. That would be more of a skilled nursing facility perview. Assisted Living generally works on socialization, keeping seniors as active as able, community and some occupational therapy to keep them more active and interested. They are not nursing facilities per se, and often do not have an RN or LVN (LPN) on duty unless for memory care. It is as you said, dignity, activity,community, food. Pain minimalization again falls under medical. Some assisted living communities have close ties with one or more physician groups, with regular visits if the Senior joins that MD group, by RN or by Nurse Practioner. That general gets more physical followup, for instance, any signs of UTI. How is the blood pressure. How are current medications working.
You have the priorities correct, I think.
It is also wonderful when there is some Social Worker advocating going on, though again that is not necessarily their priority. It helps with acceptance of the aging process, deciding when palliative care is appropriate, helping family in decisions involving hospice, and etc.
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