New to parent in rehab; How do I start to be Mom's advocate without becoming an adversary to the staff?

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.

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?

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.

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.

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!!

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.

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.

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!

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.

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.