Follow
Share

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?

Find Care & Housing
As POA for my husband's elderly aunt, I have requested that the doctor call me 24 hours before he comes to visit. I have a very flexible work schedule and I want to emphasize that she is in an assisted living facility and there is not a doctor at the facility at all times. I also have a pretty good relationship with the nursing staff and they have called me multiple times and asked me to come over and check on her as they think she is just not right. I have bought the nursing staff lunch and an occasional gift card for all that they do. That really goes a super long way with them. I know that she is covered when I am not there. I know that some people may not have funds to buy them lunch or a gift card, but even a note that says, "Thanks!!!" is super nice. I do want to remind you as I have to my aunt many times.....they have everyone to worry about and you have one relative....(I hope) that needs care......
Helpful Answer (1)
Reply to jbclync
Report

This is not an answer. I just agree with what was said above.
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/
Helpful Answer (0)
Reply to kilhefner
Report
Twillie Sep 11, 2018
OMG I never knew all this about hospice but now it makes sense. My dad was given morphine and ativan and died 2 weeks after he was admitted to hospice. I guess that’s all Medicare would pay for.
(0)
Report
If you're Medical POA, you have every right to be present with your parent/doctor. YOU need to be able to talk with emergency personnel should something happen.
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.
Helpful Answer (0)
Reply to dkentz72
Report

My friend, Jim, for whom I have DPOA and who is in a memory care apartment I found for him, is seen once a month by a doctor or other health care professional to monitor his health. I am never advised of this ahead of time, nor have I asked to be notified so I can be there. I assume that is an option. I was there when the hospice care people first came for his wife's condition and agreed with their evaluation that it was time to start hospice. She only lived another 10 days or so as her brain was shutting down and she could no longer swallow.

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.
Helpful Answer (0)
Reply to JohnnyJ
Report

If you have POA you can tell the staff that you want to be present when your loved one is seen by doctors or other professionals. You will have to be available when they make their visits. If that is not possible you can request that the doctor's or other professionals to call you after each visit. I arrange this for my clients families and it tends to work well.

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.
Helpful Answer (1)
Reply to cjwilson
Report

When you take your LO to the physician, go in with your LO.

I did it with my father and always have with my DH.

You don't need to ask, you just go with them.
Helpful Answer (1)
Reply to RayLinStephens
Report
GraceLPC Sep 10, 2018
Always take notes, bring a small digital or mini-tape recorder and ask to record discussion. This eliminates a lot of unnecessary calls to doctors office, helps you clarify future questions you may have, evidence for LO of what was actually said.
If the doctor objects, find a new doctor!
(0)
Report
When we send our loved ones with greatly reduced physical and cognitive ability into a care facility it is like sending a preschool age child, they can't advocate for themselves or make any sense of what is happening to them and can't be trusted to report accurately (if at all) what happens to them while they are there. I may be meeting with the administrator this week to go over my concerns and I have made myself a list of why I feel so completely out of the loop


"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?
Helpful Answer (1)
Reply to cwillie
Report

I believe it’s “guardianship” that is necessary. Durable power of attorney is different, although I’ve been fortunate that dad’s docs call me and discuss their findings.

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.
Helpful Answer (0)
Reply to Rattled
Report

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
Helpful Answer (3)
Reply to moecam
Report

Haven't worked in a long term care facility (Nursing home) for a few years. However, nursing facilities should still be doing "care plan meetings". Family, as well as all care disciplines meet to discuss patient progress, well being and care needs.These meetings were held quarterly or whenever there was a change in pt condition. Also, facility supposed to inform family of any accident or change in condition. Even had to call family to ask if change in room was approved. Hopefully these things are still done.
Helpful Answer (0)
Reply to drooney
Report
cwillie Sep 10, 2018
Care plan meetings are annual here, we just had our first since the initial one after admission. Quarterly makes more sense as there was way too much to cover in an annual meeting.
(0)
Report
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.
Helpful Answer (2)
Reply to Sunnygirl1
Report
cwillie Sep 5, 2018
Thanks Sunny, this is a small town nursing and retirement home with 43 people on the nursing side. There seems to be ample staff and although you constantly hear how overworked everyone is frankly I don't see it, perhaps they should try working on a line or cooking in a busy restaurant for a while. I'm in Canada and there are no special hospice services in my province, this is something I've envied since I first read about it on the forum.
(1)
Report
See 1 more reply
"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.
Helpful Answer (2)
Reply to cwillie
Report
rocketjcat Sep 5, 2018
I guess in Moms facility I’m quite happy with the communication regarding medical issues...it helps having a NP on site for 40 people. I rarely speak to the charge nurse, (shes new and doesn’t come across very approachable, unlike the previous ones who were very much on my side). So I usually just talk to the lpns or NP. And they would never send her to the ER for minor issues like cuts and bruises. They also performed excellent wound care when she had a really bad bump on her head, and left it up to me if I wanted her to go to the ER, which I didn’t. And they have portable X-rays for falls.

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.
(2)
Report
See 1 more reply
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?
Helpful Answer (1)
Reply to Sunnygirl1
Report

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)
Helpful Answer (1)
Reply to cwillie
Report

Can you call the Ontario Ministry of Health and get your concerns answered?

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.
Helpful Answer (0)
Reply to Sendhelp
Report

Does your Mother have an advance directive or does anyone have guardianship?
Helpful Answer (0)
Reply to Sendhelp
Report

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.
Helpful Answer (2)
Reply to Sendhelp
Report

Ahmijoy,
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.
Helpful Answer (0)
Reply to Sunnygirl1
Report
Ahmijoy Sep 5, 2018
Wow! Their regulations must be super-strict about what to do when a resident falls. At my mom’s facility, they always did minor first aid themselves. They did send her to the ER and she was admitted for 2 days when she needed an IV antibiotic for one of those raging UTIs she’d get, and then one other time when she had an anxiety attack and complained of chest pains. But, the facility had their own portable x-ray machine and they even x-rayed her when she’d fall.

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.
(0)
Report
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.
Helpful Answer (8)
Reply to Ahmijoy
Report

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?
Helpful Answer (1)
Reply to Sunnygirl1
Report

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).
Helpful Answer (1)
Reply to cwillie
Report
rocketjcat Sep 5, 2018
I’m just curious, why would you not want a blood test on palliative care?
(1)
Report
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.
Helpful Answer (1)
Reply to rocketjcat
Report