cwillie Asked September 2018
As substitute decision maker are you asked to be present when professionals (doctor, dietitian, etc) evaluate your loved one in a facility?
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I think once someone has lost capacity we need to have systems in place similar to those for minor children where the parent or guardian is always given the opportunity to be present. In my experience, their decision making without my input is one of my major stressors. I wonder is this just the way it is or are families given more opportunity to participate elsewhere?
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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 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.
I noticed your description of the facility calling you if your mom scraped her arm from banging it on room door. That's the kind of thing that my LO's MC sends her to ER about. I'm not kidding. Even if your own doctor is scheduled to see her at the facility the next morning. I like the facility, but, sending her out to ER in the middle of the night for non-emergency issues started to cause me concern. She's now on Hospice, so, that is not a problem now, but, if she comes off Hospice, it will likely be an issue.
It know it must be difficult to tell them at your mom’s facility to be sure they need to 911 her. You don’t want to tell them not to send her if she really needed to go.
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.
I was reading, but so far, the only thing I found was your rights to have your mother seen by an outside physician. Maybe that route will allow you more input into your mother's care, and the outside physician can order a proper palliative care regimen.
Hope this was helpful, but I would think you might already know this, being CWillie.
(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)
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?
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.
However, I would give a million bucks to see a chart on her wall for the more mundane stuff that I routinely have to track somebody down to get:
% eaten at bfast, lunch, dinner?
Slept through the night?
All Meds taken w/o problem?
Last BM?
Those are are the pieces of data that are so important to making good decisions, in my opinion, and hard to come by.
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.
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
Guardianship is granted by a court. It is expensive, and takes a while to obtain. However, it gives the guardian the right to make decisions both financial and health related. A court oversees guardianship, with mandatory check-ins four times a year to make sure the power is not being abused. Guardianship can be granted to a non-family member as well.
without guardianship, it is assumed that the patient has control over their health care decisions. Is the facility consulting or discussing the results with your loved one? Can you ask them to meet with you? If you would like to be present during consultations, I’d make it clear to them, but be prepared for them to ask if you have DPOA or guardianship.
"I don't know anything beyond what I see with my own eyes...
I don't know if she sleeps at night
her weight
if she ate
if she drank
if she's had any ventolin treatments
about her wound care
if she is ever taken to entertainment (no)
if she's had use of the ipod (not likely)
if she's been agitated or calling
I don't know there has been a fire drill or an honest to god fire call!!
if there is illness going around
you mentioned her getting music therapy with d....??
problems with her wheelchair, clothes, personal care items
Why is she in bed today?"
I can always ask (as I did when I found mom in bed this morning) but often the answer is "I don't know". And yes, I arrived at the NH yesterday to find my way blocked by fire engines and firefighters, if I hadn't seen it with my own eyes I wouldn't have know it ever happened! And why are so many residents carrying basins, is there noro virus in the building?
I did it with my father and always have with my DH.
You don't need to ask, you just go with them.
If the doctor objects, find a new doctor!
Guardianship gives a person the ultimate decision making power over another individual, but it is a court ordered, is costly and takes time to get (you have to hire an attorney to go through the process.) However, a good POA can give you the same ability to make decision for an individual.
Every so often I go to the health care services department and talk to someone there who can update me on Jim's latest results. My friend is pretty healthy physically, so it's not an urgent matter. I see him once a week or more on my own and he always talks about how healthy he is at age 92, mentioning it several times each visit since he can't remember what he has said. His weight is stable. I take him to his eye doctor appointment and dentist about every three months for each since he doesn't remember to brush his teeth and has had high eye pressure in the past. Knowing all his records are available to me whenever I ask about his health eases the concern of my needing to be there when the health people come to monitor him. If he develops a more serious health issue, I will become more closely involved. And, I should probably ask now how that would work so I can be ready. This facility has provided excellent care for my friends, and I am very relieved with this and glad I found such a good place for them.
Good luck. It shouldn't be an issue to be more involved when necessary.
If you are GUARDIAN of your parent, they are considered under the Law as minors. I'm Guardianship/conservator for our Mother. None of my siblings can question my decisions, BUT I would not make any MAJOR decisions without talking with them and Mom's 2 brothers. I feel that those decisions are going to be extremely hard and I need to hear the debate. But, the final decision is mine. I make the decision as to whether the doctor can give information to my siblings....right now, the only other relative is Mom's youngest brother.
It's tough, but YOU have to stand up for your parent.
If my opinion had been considered, my mother would still be alive. I was her caregiver and I still cannot comprehend what made my sister act like God to decide who should live and who should die.
I do not talk anymore to my 3 siblings for having sent my mother to the hospice that, in a matter of 14 days, killed my mother.
None of them was willing to take care of her and rarely visited my mother or ask me if I needed help.
I ended up in the hospital with 2 more compression fracture for 2 nights after a bear hug to place my mother in her wheelchair and I felt forced to request help and , it was enough 2 days away from my mother for them to decide that she had to die because they did not want the burden of her care.
I was never asked about her health and her records. I was lied about the hospice "compassion" and their palliative "care"; the hospice had it all planned to end her life in 2 weeks!!. I saw it written in hospice documents!! The hospital doctor had decided to give my mother "6 months"!
For God's sake! How easy is becoming for Hospices to get rid of senior citizens!!
My mother could not talk and was given the famous cocktail of death, morphine/ativan, so later on the hospice could say that the cause of death, among others things, because no evidence at all was ever presented, was "failure to thrive"! Just lies!! And they get away with murder.
My mother always kept her weight of 125 lbs, she enjoyed watching tv, her Ensure or Boost drinks, etc Are these "dying symptoms "!!??
I still feel guilty for not being beside her those 2 days I was in the hospital.
A POA to represent her would have allowed me to be heard and defend her against her executioners, my siblings and the hospice.
Today I cannot even get her medical records to find out what else they did to her during those 2 days I was away from her.
I am glad to hear that I am not alone in my thoughts. You can google it...
https://www.reddit.com/r/changemyview/comments/1y0q8w/i_believe_murderbyhospice_is_widespread_in_the_us/