Anonymous
Post 08/12/2015 14:08     Subject: Sibling misinforming about sick parent
Anonymous wrote:They can be placed in assisted living. There are some who are more advanced than my DP and some less.
At some point DP will be placed in the Memory Care facility that is on site, but DP is not to that point yet.


OP here. Unfortunately, now the parent is in memory care unit of same facility.
Anonymous
Post 08/12/2015 11:53     Subject: Sibling misinforming about sick parent
OP, people on DCUM must all have these perfect families where no one ever does anything shady and you must be crazy to think that someone could ever do something so terrible. It is awfully nice to sit from that privileged vantage point.

In the real world, shady shit goes down all the time. People act crazy when it comes to end of life and money. Who knows what game your sibling is playing at. If you haven't ever done anything to obstruct care for your parent, why would your sibling prevent you from knowing what is going on? That is obviously a red flag. It sounds like you may have to let this go if you aren't willing to wage a legal battle.
Anonymous
Post 08/12/2015 11:45     Subject: Sibling misinforming about sick parent
OP, you need to talk to the social worker at your mom's nursing home. They are familiar with lots of complicated family dynamics. For my mom, we have multiple points of contact, and any of them can have access to her medical information, including me, my brother, my sister in law, and my aunt (who is my mom's SIL). But we usually choose one primary point of contact unofficially because it's not fair for so many of us to be hounding the docs for medical information and expecting callbacks.

Elder care is really hard. Can you explain more how things got to the point that your sibling refuses to share information? Start at the beginning so we can be more helpful to you.
Anonymous
Post 08/12/2015 11:41     Subject: Sibling misinforming about sick parent
Anonymous wrote:
Anonymous wrote:We just placed my parent in assisted living. We were all in denial about Alzheimer's even though that was the diagnosis.
We waited for over a year to place DP. Parentwas living independently and daytime was fine but nights were awful, and we could not stay over.
Luckily, I was searching for a place for DP for over a year.
I am not POA but was always very involved with DPs care. Because no one else was able to search and I had elderly care experience, siblings were agreeable. That is not to say for one minute that there is not constant squabbling.
One sibling lives over a 1,000 miles away and is unable to help. Another thinks there is a huge conspiracy and my parent is fine/lucid whenever they are w DP. Yet another is worried about spending.
You have to be involved and stay involved.
It is extremely difficult and I am exhausted from all the mediating.


I though that assisted living is unable to manage the care of those with dementia/Alzheimer's?


My mom has dementia and she has done well in just Assisted Living for the past three years. Soon, she will need to step up to more intense nursing care, but for now the structure and predictability of assisted living, with the comforts of her own furniture and her own surroundings, has been great for her mind.
Anonymous
Post 08/12/2015 06:14     Subject: Sibling misinforming about sick parent
If a parent is is a nursing home but you are not POA, is the nursing staff really unable to tell you things when you visit like, "Your mom had a rough night. She kept trying to get out of bed and was calling out", or "sometimes your mom seems to recognize people and sometimes she doesn't", or even "your mom has an aid with he at meals because she can't feed herself"? Or do you just have to spend time there and see for yourself?

Again, meet with the social worker, OP. They are accustomed to complicated family dynamics and though they may not be able to provide you with medical information about your mom, they should be able to hear you out and offer guidance, support and resources.
Anonymous
Post 08/11/2015 23:10     Subject: Sibling misinforming about sick parent
They can be placed in assisted living. There are some who are more advanced than my DP and some less.
At some point DP will be placed in the Memory Care facility that is on site, but DP is not to that point yet.
Anonymous
Post 08/11/2015 22:28     Subject: Sibling misinforming about sick parent
It sounds like the fundamental problem is you simply do not trust your sibling; you don't have any specific knowledge that they are abusing your parent, but you wouldn't put it past them. And because they are the designated point of contact, they are also your only conduit to receive info about your parent's health care -- and since you don't trust them, you don't trust the information you are getting. You would trust a health care provider, but b/c you are not the POC, you can't get information directly from a health care provider without going through your sibling (who, again, you don't trust).

Unfortunately, without specific allegations of abuse, I don't see any way to circumvent your sibling's role.
Anonymous
Post 08/11/2015 22:15     Subject: Sibling misinforming about sick parent
Anonymous wrote:We just placed my parent in assisted living. We were all in denial about Alzheimer's even though that was the diagnosis.
We waited for over a year to place DP. Parentwas living independently and daytime was fine but nights were awful, and we could not stay over.
Luckily, I was searching for a place for DP for over a year.
I am not POA but was always very involved with DPs care. Because no one else was able to search and I had elderly care experience, siblings were agreeable. That is not to say for one minute that there is not constant squabbling.
One sibling lives over a 1,000 miles away and is unable to help. Another thinks there is a huge conspiracy and my parent is fine/lucid whenever they are w DP. Yet another is worried about spending.
You have to be involved and stay involved.
It is extremely difficult and I am exhausted from all the mediating.


I though that assisted living is unable to manage the care of those with dementia/Alzheimer's?
Anonymous
Post 08/11/2015 21:11     Subject: Sibling misinforming about sick parent
Anonymous wrote:
Anonymous wrote:OP, you need medical POA to be given medical information about your parent's treatment. That has nothing to do with Caring Bridge or any of those types of sites.

I have a parent with Alzheimers who lives out of state. It is never definitively diagnosed, since it requires a brain autopsy to be certain. A neurologist would typically diagnose it by ruling other causes of dementia out. It's not always precise - in my father's case, they initially thought it was vascular dementia but after time and more MRIs determined it was Alzheimers.

Believe me, your sibling can't just toss your parent in a skilled nursing facility because s/he want to do that - you have to have an underlying medical need, and then either you shell out a lot of money ($9k per month in our case) or you find a rare bed for someone on Medicaid. And no nursing home is going to medicate an elderly person who is otherwise healthy. Unfortunately a lot of Alzheimer's patients require some meds to sleep without disturbance or to minimize anxiety and other psych conditions.

Fwiw OP, even if you don't believe the diagnosis, it's probably accurate. A lot of Alzheimer's patients have amazing coping skills - they typically learn to fake greater comprehension as a way of compensating for their deficits when they're still aware. My father charms everyone he meets. But he doesn't know what day it is, or where he is, or how old he is; he's incontinent and can't eat solid food. And he often describes events that we know are purely delusional.


OP here. I am grateful, thank you, thank you. I believe there is a legitimate diagnosis. What I do not believe is that any immediately related family can not automatically be the point of contact. But beside that, it is a frustrating process, as you know. There is a history here and sibling is taking full advantage in their favor. I want to be sure my parent is getting the best care, and I want to know how we can avoid death's door, if there is hope, how I can find it, frankly. Thank you again. If you are available to chime in again, I would be even more grateful. Unfortunately, I don't know what questions to ask.



It is absolutely true that all immediate family isn't entitled to get information. The patient gets to decide who has access to their medical information, including to decide who will make decisions about who gets information once they're infirm. I'm sure you can imagine alternative situations where it's a very good thing that patients can limit who can get information about their medical situation.

As for the care and prognosis, if it really is Alzheimers, dragging out the dying process is not necessarily in your parent's best interest. I know that sounds cold, but it's true. Obviously people shouldn't be abusing your parent to hasten their death, but you shouldn't hold out hope that this condition is somehow going to reverse itself and your parent will regain their full cognitive function again, because that won't happen. Once their condition has deteriorated enough to qualify for a nursing home, if your parent is comfortable and safe, that's about as good as it gets. I'm sorry, OP.
Anonymous
Post 08/11/2015 20:59     Subject: Re:Sibling misinforming about sick parent
Have you visited?
Anonymous
Post 08/11/2015 20:51     Subject: Sibling misinforming about sick parent
Anonymous wrote:OP, you need medical POA to be given medical information about your parent's treatment. That has nothing to do with Caring Bridge or any of those types of sites.

I have a parent with Alzheimers who lives out of state. It is never definitively diagnosed, since it requires a brain autopsy to be certain. A neurologist would typically diagnose it by ruling other causes of dementia out. It's not always precise - in my father's case, they initially thought it was vascular dementia but after time and more MRIs determined it was Alzheimers.

Believe me, your sibling can't just toss your parent in a skilled nursing facility because s/he want to do that - you have to have an underlying medical need, and then either you shell out a lot of money ($9k per month in our case) or you find a rare bed for someone on Medicaid. And no nursing home is going to medicate an elderly person who is otherwise healthy. Unfortunately a lot of Alzheimer's patients require some meds to sleep without disturbance or to minimize anxiety and other psych conditions.

Fwiw OP, even if you don't believe the diagnosis, it's probably accurate. A lot of Alzheimer's patients have amazing coping skills - they typically learn to fake greater comprehension as a way of compensating for their deficits when they're still aware. My father charms everyone he meets. But he doesn't know what day it is, or where he is, or how old he is; he's incontinent and can't eat solid food. And he often describes events that we know are purely delusional.


OP here. I am grateful, thank you, thank you. I believe there is a legitimate diagnosis. What I do not believe is that any immediately related family can not automatically be the point of contact. But beside that, it is a frustrating process, as you know. There is a history here and sibling is taking full advantage in their favor. I want to be sure my parent is getting the best care, and I want to know how we can avoid death's door, if there is hope, how I can find it, frankly. Thank you again. If you are available to chime in again, I would be even more grateful. Unfortunately, I don't know what questions to ask.

Anonymous
Post 08/11/2015 20:49     Subject: Sibling misinforming about sick parent
Anonymous wrote:
Anonymous wrote:If you are there enough sitting bedside that the nursing staff knows you, ask to speak with a social worker or for a contact with some Elder Affairs office. They should be able to help you learn who to report suspected abuse or neglect to. They my be more knowledgeable about any legal means you can pursue to appeal your status.


But my sibling would know who reported, and it would be bad.....

OP here.


OP, if you think your parent is being abused in some way, you eventually will need to stick your neck out to protect them. There is no magic solution.
Anonymous
Post 08/11/2015 20:47     Subject: Sibling misinforming about sick parent
Anonymous wrote:If you are there enough sitting bedside that the nursing staff knows you, ask to speak with a social worker or for a contact with some Elder Affairs office. They should be able to help you learn who to report suspected abuse or neglect to. They my be more knowledgeable about any legal means you can pursue to appeal your status.


But my sibling would know who reported, and it would be bad.....

OP here.
Anonymous
Post 08/11/2015 12:33     Subject: Sibling misinforming about sick parent
We just placed my parent in assisted living. We were all in denial about Alzheimer's even though that was the diagnosis.
We waited for over a year to place DP. Parentwas living independently and daytime was fine but nights were awful, and we could not stay over.
Luckily, I was searching for a place for DP for over a year.
I am not POA but was always very involved with DPs care. Because no one else was able to search and I had elderly care experience, siblings were agreeable. That is not to say for one minute that there is not constant squabbling.
One sibling lives over a 1,000 miles away and is unable to help. Another thinks there is a huge conspiracy and my parent is fine/lucid whenever they are w DP. Yet another is worried about spending.
You have to be involved and stay involved.
It is extremely difficult and I am exhausted from all the mediating.
Anonymous
Post 08/10/2015 19:42     Subject: Sibling misinforming about sick parent
If you are there enough sitting bedside that the nursing staff knows you, ask to speak with a social worker or for a contact with some Elder Affairs office. They should be able to help you learn who to report suspected abuse or neglect to. They my be more knowledgeable about any legal means you can pursue to appeal your status.