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My Mom has "cognitive decline" termed by her Dr, but not termed Alzheimer's. She is on Aricept and Mematine but was living alone and able to take care of herself until what we believe was a fall that she didn't report. She went downhill quickly forgetting to eat and take her meds. We got her to the hospital where she was for three days. She started eating and of course they gave her meds. She went to rehab late today and I don't have a clue as to where to start. Her diagnosis is Failure to Thrive and I know they are going to give her physical therapy. She is miserable, lonely, crying that she just wants to go back to her house. I know others have been through this and just need advice on how to deal with her heartbreak, as well as how to work through the system to get information in a timely manner without being seen as a "bother" to the staff. What should I ask? I already saw and corrected that the hospital sent over a list of meds that included two that she hasn't taken in years. No one had asked me and it just happened that I went to the front intake desk and saw the list. I just got through having to be forceful in the hospital since they were not giving me any information unless I paged the Dr four times before he responded (and that was in three hours - not as if I expected him to respond in 15 minutes), found the nurses were not giving my Mom her glaucoma eye drops at night even though I had gone over her medications with her and an initial Dr.


So, where do I start to be Mom's advocate without becoming an adversary to the staff? I have no clue about the process and everyone seemed to be too busy to take the time with me.

Thank goodness for the advocates!
First of all, there's killing with kindness, even if that's not the best turn of phrase here, I'll assume you know what I mean.
Take something for the staff. Donuts, cookies, Starbucks gift cards, whatever you can do.
Email on a weekly basis and ask for reply and updates. It's likely to be easier for someone to respond to you via email than by phone call, and you can cc whoever you need to include.
Definitely, you need to see the list of medications. Get rid of anything that is not necessary. Do people with dementia really need to take vitamins? Is it going to benefit them? Ditto with anything else that is 'extra'.
Show up at various times and look around. Sit with your mom through a meal.
Yes, she is going to be upset. You just the course and be the rock. Visit on a regular basis, bring things that she likes, be upbeat.
Then there is the whole issue of taking care of yourself so you can take care of her.
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Reply to Rabanette
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O.M.G. I thought maybe I wrote this post as I am going through the same thing with my mom in her nursing home. I am her legal guardian. I am getting nowhere. I must go to sleep right now and read this complete thread in the morning.
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Collant Feb 19, 2019
I wish you luck and send my prayers. All the answers were helpful and insightful, as well as encouraging. I still have issues about how her needs are being met - they don't want her to be alone but unless I or my brother go there during meals they do not take her down to the dining area to encourage her to socialize. It's easier for them if she eats in her room, but not best for her. And for my Mom, she has 1 hour or PT and OT and then nothing to do for the day which makes her bored and sitting there thinking about why she is there, how she got there, and what is going to happen to her. I asked last week if she could go to the second floor (skilled nursing facility) when they have Bingo and music and they said yea, but never did it on the days they were available. Today I was there until right before Bingo started and insisted they take her up to give her something to do. The Activities manager never spoke to me was supposed to and I brought it up at the Care Conference yesterday. She still didn't get in touch with me, but today I just pressed the issue. If there are activities and your Mom is able to do them, press for it. Nothing is worse than what happens when they are bored.
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I've found in my mother's case that the staff really does appreciate when I notice things and bring it to their attention. I also go out of my way to thank them for her care and comment on all the things I see being done that are to her benefit. I do watch out for these things. The other thing that happened was during a patient care meeting when everyone else there was bitching and finding fault I jumped in and came to the staff's defense. I guess the word got out that I won't put up with anyone trash talking my Mom's girls and now I think she gets a bit of extra attention.
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Collant Feb 16, 2019
Thank you - I a numb. And you r response with everyone else on this website it sooooo helpful and somewhat calmig. Bless you all!
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You must speak up. Talk to the Ombudsman if mom isn't getting dosed properly with her medicine - especially eye medicine. Good grief. That's of paramount importance! Bring up everything to this person.
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Reply to Llamalover47
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You start by not worrying if you are a bother or an adversary to the staff.

YOU pay them, not the other way around. Your ONLY concern is your loved one and the loved one's well-being.

Then you start searching for what our loved one needs and you fight and get ugly if you must - but your mother not getting her glaucoma drops is NOT acceptable. You take the fight right up the ladder, even if you must report to the State Board.
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Reply to RayLinStephens
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You already are - you found out that her meds list was out of date & the staff will have noted you as the 'on the ball' family member - if you are her POA then they must contact you for any meds changes etc & if you are not have your mom go in person to the nurse IN CHARGE & say that they can discuss anything about her with you [tell your mom this is the best way for her to get info too as it often is]

As to your mom - sit her down & tell her fairly bluntly that all her crying etc is slowing down her return home as they won't let her go until she has improved to a certain point - you'll have to say that her co-operation is her fastest way home not doing a 'poor me I'm not in my home' routine - I know this sounds harsh but pussy footing around isn't going to help her - my mom remembered things best said if there was anger, humour or shock involved as somehow that stayed with her & she would remember it

It is a fine balance between being a pain & being aware - start by learning a few names of the nurses - if you are pleasant & call them by name then they will respond to you better - by using their name you are showing that you are paying attention to them as people - use a few compliments where it is appropriate to the staff as they will look at you more favourably

Your mom won't be at rehab forever as she'll either improve enough to go back to her own place or go into assisted living - if she goes home then you will have to monitor her food by checking her fridge & if nothing is eaten then there is a bigger issue - after a fall she may have been reluctant to go out to the store for more food so may have been hoarding it 'for when I really need it' & leading to a nutritional decline etc

It won't easy for her nor for you as she may fight assistance or may accept it - always hold out hope for her improvement especially to her as nobody wants to be told that they are permanently restricted - try to think how you would deal with her situation if you were in her shoes - let her know you care & aren't just being bossy

If she hasn't got a POA etc in place now is the time for her to look at things ASAP as after a certain point then she won't be able to & the government can take over - see if you can help her with her finances while she is in rehab by telling her that you need to do the running around until she is able to & then you'll know her whole situation .... however she may down load that on you permanently
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Keep written notes about everything! Names, dates, times, what was done - EVERYTHING! That way when you do have a complaint you can give concrete examples and name names if necessary. (Be sure to record when you make a complaint and what happened). You don't have to tell them you are doing this, but don't hide it either. I am never without my medical notebook and refer to it frequently.

Wait your turn, Unless it is an EMERGENCY, wait until conversations/ paperwork is finished (stand slightly to the side where you can be seen) and polietly and quickly explain what you need/want.

Thank everyone for everything they do. It doesn't have to be a big production, just a quiet "thank you". Occasionally commiserate with the staff. Again, it doesn't have to be a production, just "sounds/looks like you are having a rough day".

One other thing I do is help the staff out as often as I can with my loved one. Does he need water? I find out where I can get water, juice, etc. Any non-medical supplies, like tissues, giving directions to new visitors, anything I can do to help out.

All of this goes a long way to helping you be a good advocate for your Mom, you have details and a good rapport with the staff. At this point, they should listen and work with you. If they don't, make waves and also look for a new location for Mom.
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Reply to mavisgm
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My wife has been in a NH for about 15 months except for many trips to the hospital that amounted to a little over 3 months of that total.

I am able to go almost daily, I think I have missed 10 days so far, Too much, yes, but with my wife being bipolar plus partially paralyzed on her dominate side in order to "help" her keep a somewhat positive attitude.

I speak to everyone I see from residents, Dr's, NH staff from the lowest position ( not my opinion ) up to the director I speak to each one with the same level of respect. I let all the employees know that we are colleagues rather than adversaries. I let all of the employees know I respect the job they do and thank them.

However, I am not a pushover, I have had a yelling match with doctors and nurses for mistreating my wife and making poor excuses continually.

Whenever we have a patient care meeting they let us know that we should plan on 10 to 15 minutes. The last 2 took 45 minutes each. I ask questions about everything from food service, activities, showers, to her health care.

You are your Mom's advocate and you are the one to stand up for her.
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Collant Feb 16, 2019
Thank you - I a numb. And you r response with everyone else on this website it sooooo helpful and somewhat calmig. Bless you all!
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Ask for a care plan meeting. It's a chance to see how they understand her condition and goals. It's also a start to developing a rapport with her team, including the social worker. Try to interest you mom in fun activities and participate with her. I kept a domino set in her bureau and would bring a treat like strawberries and whipped cream for her to enjoy while we played. It's important for the staff to see that you are actively engaged with mom and putting her at the top of your list of priorities. And try to visit at different times on different days. You get to know more of the staff and they you. Sometimes, a medical professional will think you are being meddlesome; don't worry about it. I learned which nurse that was assigned to mom was easier to work with. Mostly, though, I worked primarily with the social worker. It's their job. Most questions or requests can be managed by them if they are good. They know best who to channel the question or concern to. You just need to follow up if you don't hear back. Pace yourself. Last, if your mom is capable of phone conversations, do so. It can be very reassuring for her to hear your voice. Share a joke, read a poem, you get the idea.

Take one day at a time. Although she may not be able to return home, that remains to be seen and she needs to be motivated to improve as much as possible. Check the details of her insurance because there may be stipulations concerning leaving facility and for how long, but I used to take my parents out of facility for a specialist doctor's appointment. We always included a snack or lunch in that outing (provided they could tolerate it) and that time out was the best medicine. Better than a cold tray back at rehab. If food isn't right, taking a longer, scenic drive back can be so calming.
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Reply to lynina2
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Coolant,
I'm afraid there is no way to potentially avoid upsetting staff whether it be medical personnel or aids. I always try to watch my tone, but I found I have to be firm, repeat myself often and go up the ladder if my concerns for my mother are ignored. I've done this at the hospital, rehab, assisted living and now the nursing home. I HATE having to constantly be the one doing this, but who else is going to be my mother's advocate?
I hate confrontation of any sort, but I'm starting the 5th year of this with no help from siblings (hence my moniker for this site), so I'm just plodding on with the help of my own counselor & antidepressants.
I do recommend heaping praise and thanks to those who do listen & assist in your mom's care...even if they were the ones causing the headaches in the first place.
You also might want to seek counseling for your mom. It's covered by medicare.

I wish you the best.
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Reply to Resentfully
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Your priority is being Mom's advocate. Nursing homes have their reputation not because of stereotypes. Its about numbers. You WILL become their adversary simply voicing matters that are not acceptable. I recall the family took a night off taking turns to be with our mom and went to a baseball game to yell and blow off steam. Mom was wet all 3 shifts. I told the DON (director of nursing) this place will be called Mary's Manor as I worked for law firm that specialized in elderly law). Its sad but not avoidable. Best of Luck.
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Reply to commutergirl
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Failure to thrive is quantifying for hospice care. Talk to social worker at facility. That's their job. To talk to you. Mementin
helps memory a little but once it's discontinued for whatever reason the result is rapid mental decline. God bless you and yours.
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Collant Feb 19, 2019
Thank you for taking the time and the information about the mementine. Perhaps when she stopped taking the medication for a week or so that it led to what I saw as a rapid decline.
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Dear Collant,
I think the key is in your first sentence- advocate. I believe that taking care of your mom is definitely in the will of God. I found that keeping a notebook, writing everything down and keeping it organized and detailed... with “next steps or questions” was a huge help to me. It is a huge plus for your mom that any institution staff see you there and keeping abreast of her and her situation - (by the way, way to go on the two medications!)

When my mom was in a SNF rehab, I spoke with the Dr on staff, nurse manager and the caregivers regularly... asking questions and getting clarification on things. They are busy, but it’s important to stay on top of what is going on with mom’s care, otherwise, I don’t think it’s good. For me, I focused on her physical therapy, nutrition, and daily care. For instance, what do they cook/palatable for mom/can she eat, staying hydrated, having something in her room to encourage her and keeping her comfortable (sufficient blankets and pjs from home), and her activities .. No worries regarding being adversarial. Just establish communication with staff.

Regarding heartbreak, I hear you and I struggled with that! It was so hard on my mom as well as me. My 92 yr old mom was hospitalized and right afterwards, ended up staying in a SNF for three months for rehab. I would break it down to smaller pieces.. encouraging your mom by telling her to take things one day at a time and when you see her improve in ANY area, encourage her in it. We cannot lop out large chunks of time and know what will happen next. None of us can.. just do your best and the Lord will honor that. He is the biggest advocate in this- you just show up and watch Him! I prayed for you- that He would encourage you and your mom, and place the right staff and people in your path! Many blessings to you in this journey. You are not alone and are among many who understand and applaud you along the way!!
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Collant Feb 19, 2019
Thank you for your prayers. They are especially important as I make the next decision - where to place Mom in assisted living with Memory Care and then to pray that she adjusts that she is not in her own home - but physically and financially that is not possible with her needing 24 hour supervision. So sad.
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I shouldn't have been shocked to learn that the third leading cause of death in the US is medical errors as, like you, have found my parent's meds were not correct or blood draws were taken from an arm with a limb alert bracelet, etc. But I remind myself of that when I see something that isn't right or I feel I need more information during a hospital or rehab stay. I'm non-confrontational by nature so this isn't comfortable for me either. Just recently when my Mom was in the hospital after a fall, I would have my brother (who is out of town) call the nurse's station and ask the questions I gave him. He got results when I couldn't and it took me out of any possible "pain-in-the-neck" role. I'm not sure how he did it but they always came in right away after he called!

Mom's in rehab now and I have to say, they are genuinely interested in doing what they can to help her get well. So they seem to welcome suggestions or questions much more than the hospital did. You mentioned memantine and Aricept and that was one of the first things the NP asked me about as my Mom also took both. The NP "had a heart attack" (her words) when she saw Mom's med list and said it was no wonder she was falling. Mom was taking other meds too but the NP suggested stopping the memantine immediately and possibly discontinuing the Aricept at a later date as I told her she had trouble adjusting to both meds. This is the first time in months that my Mom's personality seems to be coming back - yes, she still has major cognitive issues, but she is finally accepting that she can't live on her own anymore and isn't fighting us like she had been.

Like you said, everyone always seems very busy in these facilities and it's not always easy to voice your concerns. But there should be a case manager for your Mom who you can call to either set up a meeting or talk to about the things you are questioning. As others suggested, having a care team meeting is also helpful to meet all the people involved and get your questions answered. Best of luck to you and your Mom - I hope things work out for you both.
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Collant Feb 16, 2019
Thank you - I a numb. And you r response with everyone else on this website it sooooo helpful and somewhat calmig. Bless you all!
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It's an art-form, let me tell ya!

Tell your mom you're here to support her in any way you can. That we will 'figure it all out', 'I'm here with you', 'I love you', etc etc.
Reassurance, reassurance, reassurance. And hugs, lot of hugs (if you guys are like that with each other). Reassurance and physical touch.

Are you her legal Medical POA? Introduce yourself that way if you are (if you aren't, it should be ok anyway)

Go to the HEAD nurse and tell her the medical things....she can get it changed in the system.

Then go talk to a Social Worker about your mom's situation. Their job is get people out of the hospital asap. They cannot force her out unless you have a place for her to go IF you are moving out of her home.
You ask her what your options are....

Be calm, KIND, and kept it short....and thank them for 'all that you do'.
Appreciation always helps.

All the best to you and mom!
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NeedHelpWithMom Feb 15, 2019
I’ve even heard doctors say that nurses are your best friend. They do get things done and in some cases do most of the work.

When I was born the doctor went to the wrong hospital and a nurse delivered me!
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Talk to the Hospital Social Work and tell them your Story. I do Not feel Mom should go Home alone and any Good Hospital will Talk to you, Such as the Social Worker, About Skilled Nursing Care.
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Reply to Parise
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Do you have any family or friends in the medical field? We were fortunate to have a nurse in the family who could talk to staff in their language. There are also times you have to be adversarial or confrontational. But it can be done without expressing anger or accusing someone of doing something wrong.
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Reply to annandpaul1629
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Bless you! It’s so hard!! My father has been in rehab 3 times and yes you do want the staff to know you are keeping an eye on things. I’m sorry your mom isn’t doing well. Her diagnosis as failure to thrive is not unusual when they've been hospitalized and sent next to rehab. They miss their normal surroundings and routine and it’s hard on persons with dementia. The care conference will be important. Ask about involvement in activities. What are the treatment plan for physical, occupational and speech therapy. Find out what the test results are when they do her cognitive baseline assessment. They should work with her to improve that through ST. Try to be present on the day the house physician visits. She may need to take an antidepressant to help. Let us know how the conference goes.
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Reply to Harpcat
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First of all don't worry about becoming an adversary to the staff. As long as you are not losing your temper and being abusive, then you are well within your rights to insist they do their jobs properly. They are obligated to be professional and to carry out their duties. Most won't hold it against you anyway. Second do a google search and find out where your local Area on Aging is. What you need is an ombudsman. These are people who volunteer or are employed to be advocates for people in care facilities. Contact them and get advice and assistance.
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Reply to Bethany678
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Good I’m glad you’ve gotten the care conf scheduled! There should be a written activity calendar that will have all the planned events by day for the week or the month. You can attend some of those activities with her if that would be helpful. Sorry I didnt mention that earlier. My other suggestion is to attend some meals with your Mom. The dining room is an excellent place to learn about the staff and other residents. Something about food always seems to relax people. You will be able to watch the CNAs and LPNs in action and how they interact with you Mom and other residents, and perhaps be able to engage in a more casual conversation with them. I find lunch or dinner are the best times for this...breakfast is usually chaos trying to get people up, cleaned up and to the dining room. I avoid getting in their way at breakfast at all costs. If you’re able to go a few times a week, I would try some lunches and dinners. That way you get to meet the 2nd shift staff too.
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Collant Feb 16, 2019
Thank you - I a numb. And you r response with everyone else on this website it sooooo helpful and somewhat calmig. Bless you all!
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You are in good company here.

This is hard. Harder than you can imagine but you will prevail.

Often with dementia, you have extremes due to personality changes inherent in the disease. Some have the crying. Some have profound anger and aggression. I don't know which is worse. My heart goes out to,you and your brother.

Come to grips with the fact that psychotropic meds may be necessary. My mom very angry very aggressive. Abilify has made HUGE difference. Yes. Seroquel, Abilify, respiridal come with black box warnings about using in elderly with dementia. But it is about quality of life.

You want a care meeting. Both you and brother need to be present.


You sound like a really good advocate. You can do this. Hard. But you can.

My mom was in the failure to thrive thing too. I have an idea what you are going through.
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Collant Feb 16, 2019
Thank you - I a numb. And you r response with everyone else on this website it sooooo helpful and somewhat calmig. Bless you all!Thank you - I a numb. And you r response with everyone else on this website it sooooo helpful and somewhat calmig. Bless you all!
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Any of us who have had loved one’s hospitalized or in a facility have been through this on some level. I know its very difficult, when we feel we are not getting information or the answers we need, to stop ourselves from. jumping up on the desk at the nurses’ station, pounding our chests and shrieking “Pay attention to ME!!” But as my mom always said, “You catch more flies with honey than with vinegar.” We never get a second chance to make a first impression. The last time my husband was hospitalized they actually lost him. A 350lb. man! I made my way up to the floor they “thought” he was on and patiently waited for the nurse’s attention. I calmly asked if Mr. So and so had just been admitted and what room he was in. Within five minutes, I was in his room. The staff was following their procedures and I didn’t interfere. I did not approach his hospitalization thinking I had to be a warrior woman at every turn. After a while, the staff came to know me as a reasonable person who always gave them a chance to explain and did not jump to conclusions about my husband's care.

Your mother feels lost and scared. She’s your mother and this is very personal and hurtful to you, but her reaction is not unusual. She will accustom herself to the situation. Things won’t be sunshine and roses, but if you keep things upbeat and cheerful, it will make things easier on her. If you feel sad and teary, wait until you leave her presence to give into your emotions. Tell her she can come home when she feels better and the doctor says she can leave.

Good luck. Hugs and God bless...we’ve all been there.
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Collant Feb 13, 2019
Thanks so much. I have been being nice and understanding and finding my way to get information without being overbearing. Your last paragraph is especially helpful. I pray that you are right and I do try to put the positive on everything with her, but also told her I won't lie to her about what is happening and when she will get out, etc. Not sure if that is the way to go, but I want to maintain trust as long as I can. And, thanks for the hugs and God bless. I am blessed with a wonderful understanding husband.
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Wow I can commiserate. I was clueless how to navigate Moms first stint in rehab. The first thing I would do is figure out who’s who in the hierarchy of your Moms rehab. She will probably have CNAs (the hands on caregivers that help her dress, get to the bathroom etc). There probably will be LPNs who dispense her medications on the various shifts. They will report to an RN, who will report to a Nurse Manager, a PA or NP (who can write scripts and orders) and then maybe a doctor. At Moms large rehab facility the doctor was illusive. There may be an administrative assistant probably who can tell you who all these folks are. Then you will have physical therapy and occupational therapists. Ask for a care conference as soon as possible which will get the major players in a room with you to discuss her current state and how they want to proceed.
Take a notebook in and take down notes and names. Watch her Med list like a hawk! As you’ve already found is a huge potential screw up.
Hopefully you already are on her HIPPA list and POA?
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Collant Feb 13, 2019
I am her POA and with my brother we are her Health Care Proxy. Thanks so much for the "process." Today I requested to meet her nurse, PT and OT and thankfully I did because I found out that there are activities like Bingo, Etc. No one had told me about that because she is pretty bored. I've never been a person who doubts herself, but this situation is so emotional that I am amazed how hard I find it to function. The Care Conference is Monday, but I am trying to make my inroads now. Thanks to all of you who care enough to offer help.
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