As substitute decision maker are you asked to be present when professionals (doctor, dietitian, etc) evaluate your loved one in a facility?

I was always, to a fault, notified when anything changed with my mom, even as far as dressing a scrape from her banging her arm on her room door. I have to admit, sometimes when her meds were changed, it was on doctor’s orders and I was notified after the fact. But he was the doctor and knew his patients. I would not have second-guessed him and he had my permission to do whatever he felt was right for my mom. The dietician also kept an eye on Mom and I didn’t feel I had to be notified when she asked them for something additional or less of something on her tray. The dietician and the nurses felt she would benefit from Ensure, so she got it. And that was ok with me, too. As soon as she began to try to leave the facility, they tried an ankle monitor. When she cut those off, we had a meeting and she was put in the locked unit. Their care for her safety and well-being was well above and beyond what I expected.

I did not visit every day. I babysat and also care for my husband so there weren’t enough hours in the day and Mom was well cared for. “The non- custodial parent”? Well, no, not really. I was always very much welcomed even by a different staff when she went into Memory Care. I trusted them to take care of my mom and they did a very good job. Not perfect, but very, very good.

When I take mom to drs I stay with her the whole way except for xrays & MRIs [I have knee replacements] - she always says 'I'm fine' when asked & won't give accurate info to drs - then I also know what was done & said - I have never had any office/dr/staff question it once the POA was shown - in fact they like to know that there is someone on the ball who keeps track of things -

Often I email my sister with the info [name, phone #, etc] & copy myself then put it in a special folder on my computer so I can find it fast if needed - I do this before going to bed that night so it is fresh in my head

CWillie,
There has been a subtle change in the way facilities, and even schools include or exclude families, parents, and guardians in decision making. The HIPPA laws were meant to solidify the dangerous goal of authorities and the gov't. taking charge of people.
Before I am accused of being a conspiracy theorist, take note that because of privacy laws (in the U.S), a minor can be removed from school and taken for a medical procedure without their parents knowledge.
It is not at all surprising that this would be happening to our elder loved ones.

So fight CWillie. Get with your sister and obtain the authority necessary to continue to advocate for your mother's best interests.

Some procedures will be dictated by policy they will say. We know that means they get extra money for lab work. What do they think they are monitoring anyway? You can ask.

You are right to look into this, imo.

Don't forget to take breaks for your own health.

"When, I visited, staff weren't that familiar with the situation and I had to repeatedly ask questions to get little information."
That sounds very familiar🤔

Mom is possibly very close to the end of life so moving is not an option. We just had our first care conference after 1 year at this NH and some of the information provided there is what has me simmering. Their repeated assertions that "this is their home and they are our family" are no reassurance when that means their real families are marginalized. They "think" they know mom but they only know the shell they see and I'm certain no one bothers to look beyond that.


I asked this question because I am curious how other facilities deal with keeping family informed, while I supposedly can go to the charge nurse and ask on a regular basis I'm pretty sure that wouldn't win me any brownie points from the staff.

Maybe, it depends on the size of the place, number of residents, etc. Is it a Memory Care special unit? Because, I'm not sure about anything else, other than the previous AL that my LO was in. I'm told that it was a fine place, but, not for my LO. They have good star rating with the state, but, something was hinky with their communication. I wouldn't recommend it. And mainly for what you describe. The reason I suspected was that there are too many residents and not enough staff. So, corners get cut and they don't have the time to document and inform. They focus their available time on the residents and not the families. That's all I can figure.

Have they ever told you that they are able to meet all her needs? And if so, how do they know this?

CWillie, is your mother eligible for Hospice? I'm not sure your/her feelings on that, but, I just placed my LO on it, after recommendation by her doctor. I had had 3 ER doctors suggest it. Her primary didn't feel she was ready until last week. After meeting with the Hospice team, I feel that we'll have even more eyes on her and monitoring her condition and needs.

At Moms NH my answer is “It depends”. I am her POA and Health care proxy. I am there every day for 3-4 hours around the lunch hour. We havent had a full blown Care Meeting since February with the dietician, NP, Social worker and therapy. But I am always consulted if a change in meds is being considered. The NP ordered an urine test without my knowledge last week, I found out after the fact, so that was fine. But for her regular monthly exams, the NP does them according to her schedule and reports back to me her findings. She has my cell phone number if I’m not around. The dietician is always floating around so I talk to her when I need her. So I guess it depends on what kind of decisions they’re making, whether I would have an issue with it.

I feel like I'm the non custodial parent and all I have are visitation rights, despite being at the NH every day I never am invited to give my input and usually find out about things after the fact or by happenstance. They keep stressing that all we have to do is ask but IMO they make asking difficult (and how do you ask about things you don't know, I discovered accidentally my mom had "routine" blood tests done, given that she is palliative this is something I had refused when she was at home).

I would think that you certainly have the right. I'd just notify them in writing that you insist on being notified of these events, meetings, evaluations, etc. and that they notify you as soon as they know of them, so you can make plans to attend.

My LO's MC has always called me as soon as they called 911 to take her to the ER, except one time and they heard about that. Fortunately, the ER doctor remembered me and called me to discuss her treatment, since I am the HCPOA So, it worked out okay.

And, does she have a doctor who comes regularly to visit her? My LO's doctor comes once per month, unless there is a reason to come at another time. I know which day, so, I can be present if I wish.

Cwillie, I would be livid if I discovered a routine blood test for someone on Palliative Care. I've had to consistently advocate for palliative care. My LO is now on Hospice in the MC, so, I think that resolves it for now. As long as she is on Hospice, anyway. Do you have a Palliative Care medical team?

I can think of very few things I have been informed about, almost everything that needed to be addressed was first brought to their attention by me . When I was told mom had a pressure sore I got no guidance from the facility beyond being told to call an outside provider, fortunately I had dealt with an occupational therapist when we purchased mom's wheelchair and knew who to call (although they somehow have taken credit for arranging that). When I saw that the skin cancer on her chest was bleeding I went to the nurse to ask for advice - since then they have kept it dressed. I never was notified that she had lost a tooth recently, I guess no one noticed? I don't know if she is eating unless I time my visits so I can have eyes on her plate. I'm not told when she is agitated and calling out, her continence schedule, her weight, if she sleeps through the night. Nobody posts office hours so I never know when or if the people I want to talk to are there that day and I can't leave a message because there is no voice mail and email addresses are not provided. The doctor works in town and stops in whenever he has a free moment so it is difficult to see him. It annoys me greatly when I discover decisions are routinely being made without ever getting my opinion let alone my consent, especially since they have none of her previous medical history - they more than anyone should know you can't ask for that from a person with reduced capacity. None of it is abusive (believe me I have looked up all the relevant legislation), just maddeningly paternalistic.

(I get that most families are content to drop their loved ones off and trust the staff to know what is best for them, but there has to be another option for those of us who choose to be more involved)

It sounds quite infuriating. I'd be frustrated for sure. I think I might read all of the paperwork that was signed and provided when she was admitted into the facility. Knowing what that says, I'd request in writing a Team meeting so that the director and staff could sit down, review the facts and agree on a plan moving forward, which would include the information and updates you require. Are you the HCPOA and Durable POA? I am and I'm not sure if that makes a difference or not.

And, if you feel that things are not going well there, I'd consider exploring another facility. Yes, it's a huge thing to move, but, it's an option OR contacting the Ombudsman for that facility to share your concerns. There are a bill of rights that apply to her care in the facility, and she is entitled to it.

I know that when my LO was in a regular AL, I had a tough time getting information. I would call the facility, which was quite large and get no answer. I'd leave messages for the nurse and get no return call. When, I visited, staff weren't that familiar with the situation and I had to repeatedly ask questions to get little information. Even though this was a highly rated AL, they were not equipped to meet my LO's needs.

It was completely different when I transferred her to a MC. They took care of her and it was documented. Yes, I'm frustrated that they overuse the ER, but, at least they were on top of things. There are less than 20 residents in the Special Care unit and someone ALWAYS answers the phone to answer my question. They immediately tell me how she's doing, sleeping, eating, ambulating, and would even put her on the phone if I requested. (She can't speak any longer.)

How long has she been in the facility?