WWYD - Father with Azlheimers & Mother ill - Update 11/26

Was I wrong to expect a text from my family since my mom has been sick and I was worried?

  • No - I wouldn't be

    Votes: 7 14.9%

  • Yes of course

    Votes: 10 21.3%

  • Other - Explain in post

    Votes: 30 63.8%
  • Total voters
    47
  • Poll closed .
Pea-n-Me said:
Well I think this thread does have some redeeming value even if discussion and advice here hasn't helped the OP much. I'm hopeful a lot has been gained from readers who may see themselves or their family members in parts of the story and taken heed, or may try to otherwise make things better in their own families.
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You took the words right out of my mouth. This thread has made me appreciate the time, effort, and communication my dad and aunts dedicate to helping my gram live independently at 92. I've made a plan to call her more just to say hi, and will be offering support to my dad and aunts in whatever way I can (I'm one of the few family members who lives out of state. I definitely took for granted how amazingly my family just works together and communicates.

I almost don't want an update from OP in a few months, because I get the sense it would break my heart to hear what's bound to happen.
 
DisneyWorldMimi said:
How many have you have read that my sister did not live there permanently? When did I say that she visited more than me in the last two years? I said she goes where ever she wants because she had no responsibilities except her husband and 2 dogs.
Topsy Travelers is assuming I had another screen name, which is untrue. I know both involved in the other scenario. Talk about wrong information, I am not going to a counselor for a court action. I have been seeing them because of the medication issue. This is what happens when someone assumes something.
I have read everything and YES hospice took my dad off all meds. I have spoken with their friend who is helping them and with the woman who cleans the house. She is a friend to my mom and takes her to caregiver classes every Tuesday.
I have been asking my sibs to get her checked. I was asking them before this incident and they never answered me. I am basically having to back her decision because my brother told me too. I know that she might not be thinking clear. This is why I have asked my sibs look into this.
My psychiatrist also felt the olanzaprine was a bad med.
I have backed off and have apologized to my mother. I will not apologize to my sibs. When I have been wrong, I have always apologized. When they are wrong, I don't get the same courtesy ever.
Let's just ask give it a rest. I say I would like her in a home but she won't go. I get called out for backing her, even though I am not the one who made the decision and was told to abide by it.
I get what everyone is saying. I want the best care for my parents. But with my brother making the calls, they will never be in a facility, PERIOD.
End of story!
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My apologies then. You mentioned in your post in February when you were explaining about the court action happening that you were seeing a counselor for the hurt. I certainly did not mean to assume anything.

I am very surprised about all the medical professionals you have around you that are willing to sacrifice their licenses by giving you advice on medication for somebody who is not their patient and someone they do not have the medical history on. Quite unusual.
 
I know I shouldn't bother, but...

DisneyWorldMimi said:
3. After getting on the olanzaprine, my dad was found wandering the streets in the middle of the night in just his underwear twice. When he retired, his routine was to go golfing in the morning and come home for lunch. After lunch he would go for a 5 mile walk and then come home and take a nap in his chair. When he got to where he could not golf anymore, mom stopped the walk because she felt he might not find his way home. The places that he was found was on the route that he would walk everyday. He was over 2 miles from home at 3 in the morning. Before that, he never left the house at night. My mom never said that he was violent. She said he was using inappropriate language. For all anyone knew, he could have been thinking he was back at his home in PA or at one of his military assignments overseas in his mind. We don't know how he acted while overseas in Vietnam or in Turkey while on assignment by himself.
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To the bolded. It's clear, if you're blaming the medication for his wandering and "inappropriate language", that you know very little about Alzheimer's disease. Instead of looking up medication information in a vacuum, or posting here, I'd suggest you take that time and study information about the disease, and how to manage it. Maybe then you'd understand that it was not the medication that was causing these things; it was the disease itself. One of the hallmarks of the disease is wandering and personality change, often not for the better. I read an excellent description yesterday, I'll include it here. The little knowledge you have about the medication is just enough to be dangerous.

"Sundown syndrome, also known as sundowning, is a common clinical phenomenon manifested by the emergence or increment of neuropsychiatric symptoms in the late afternoon, evening or at night. It particularly occurs among cognitively impaired, demented, or institutionalized elderly patients.1,2 Sundowning is a descriptive term and not a psychiatric diagnosis formally recognized in the DSM-IV-TR. Despite the lack of a formal recognition, "sundowning" is broadly used to describe a set of neuropsychiatric symptoms occurring in elderly patients with or without dementia at the time of sunset, at evening, or at night. These behaviors represent a wide variety of symptoms such as confusion, disorientation, anxiety, agitation, aggression, pacing, wandering, resistance to redirecPrint screaming, yelling and so forth. Some of these behaviors may not be specific to sundowning and can be the manifestation of dementia, delirium, Parkinson's disease, and sleep disturbances.

However, what distinguishes sundowning from above mentioned conditions is that persons with sundown syndrome characteristically show disruptive behaviors specifically in the late afternoon, in the evening, or at night.2 They can be very challenging to caregivers to deal with those symptoms. One study indicates that agitation from sundown syndrome is a common cause of institutionalization of older patients suffering from dementia.3 Other clinical features of sundowning include mood swings, abnormally demanding attitude, suspiciousness, and visual and auditory hallucinations in the late afternoon and evening.4

Geriatric clinicians have frequently observed that some demented individuals show increased agitation, restlessness and confusion in late afternoon, evening or night. This has popularly been named "sundowning" or "sundown syndrome". Clinical observations on sundowning are multiple in medical literatures, but they have failed to arrive at a consensus as to its definition. They also disagree on almost every aspect of the syndrome.5 Research data related to this unique clinical phenomenon are limited to date. Cameron described this phenomenon in 1941 as "nocturnal delirium" and "delirium and agitation within one hour of darkness".1Prinz and Raskind6 defined sundowning as a marked increase in confusion, disorientation and possibly agitation in an elderly or severely cognitively impaired subject at sunset or when daylight is reduced. Other clinical manifestations associated with sundowning are screaming, delusional thinking, moaning and wandering.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3246134/
 
Pea-n-Me said:
I know I shouldn't bother, but...


To the bolded. It's clear, if you're blaming the medication for his wandering and "inappropriate language", that you know very little about Alzheimer's disease. Instead of looking up medication information in a vacuum, or posting here, I'd suggest you take that time and study information about the disease, and how to manage it. Maybe then you'd understand that it was not the medication that was causing these things; it was the disease itself. One of the hallmarks of the disease is wandering and personality change, often not for the better. I read an excellent description yesterday, I'll include it here. The little knowledge you have about the medication is just enough to be dangerous.

"Sundown syndrome, also known as sundowning, is a common clinical phenomenon manifested by the emergence or increment of neuropsychiatric symptoms in the late afternoon, evening or at night. It particularly occurs among cognitively impaired, demented, or institutionalized elderly patients.1,2 Sundowning is a descriptive term and not a psychiatric diagnosis formally recognized in the DSM-IV-TR. Despite the lack of a formal recognition, "sundowning" is broadly used to describe a set of neuropsychiatric symptoms occurring in elderly patients with or without dementia at the time of sunset, at evening, or at night. These behaviors represent a wide variety of symptoms such as confusion, disorientation, anxiety, agitation, aggression, pacing, wandering, resistance to redirecPrint screaming, yelling and so forth. Some of these behaviors may not be specific to sundowning and can be the manifestation of dementia, delirium, Parkinson's disease, and sleep disturbances.

However, what distinguishes sundowning from above mentioned conditions is that persons with sundown syndrome characteristically show disruptive behaviors specifically in the late afternoon, in the evening, or at night.2 They can be very challenging to caregivers to deal with those symptoms. One study indicates that agitation from sundown syndrome is a common cause of institutionalization of older patients suffering from dementia.3 Other clinical features of sundowning include mood swings, abnormally demanding attitude, suspiciousness, and visual and auditory hallucinations in the late afternoon and evening.4

Geriatric clinicians have frequently observed that some demented individuals show increased agitation, restlessness and confusion in late afternoon, evening or night. This has popularly been named "sundowning" or "sundown syndrome". Clinical observations on sundowning are multiple in medical literatures, but they have failed to arrive at a consensus as to its definition. They also disagree on almost every aspect of the syndrome.5 Research data related to this unique clinical phenomenon are limited to date. Cameron described this phenomenon in 1941 as "nocturnal delirium" and "delirium and agitation within one hour of darkness".1Prinz and Raskind6 defined sundowning as a marked increase in confusion, disorientation and possibly agitation in an elderly or severely cognitively impaired subject at sunset or when daylight is reduced. Other clinical manifestations associated with sundowning are screaming, delusional thinking, moaning and wandering.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3246134/
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I've been following this thread w/ some interest as DH's dad is elderly & has many different health conditions & issues. Right now, his mom is his primary caregiver.

Anyway, I don't mean to hijack the thread, but my elderly father-in-law was hospitalized in March for pneumonia, &, while in the hospital, just went severely downhill, mental health-wise. The neuro ultimately diagnosed him w/ "Sundown Syndrome." I had never heard of it before. But it was scary.

My mother-in-law is a saint when it comes to caregiving, & she knows exactly what medicine he takes when. She also knows what each medicine is for, & she adheres to a strict schedule & routine for him. She still maintains that one of the reasons he went so downhill in the hospital was due to his getting off-schedule on his medicine the night he was admitted & he didn't get (if I'm remembering correctly) 2 of his medicines until 6 hours past his normal routine.

Oh, & she'd NEVER take him off a medicine or even decrease the dose until she consulted his doctor.
 


Jhaberlein said:
You took the words right out of my mouth. This thread has made me appreciate the time, effort, and communication my dad and aunts dedicate to helping my gram live independently at 92. I've made a plan to call her more just to say hi, and will be offering support to my dad and aunts in whatever way I can (I'm one of the few family members who lives out of state. I definitely took for granted how amazingly my family just works together and communicates.

I almost don't want an update from OP in a few months, because I get the sense it would break my heart to hear what's bound to happen.
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This makes me happy! :goodvibes I am grateful for the people who regularly call my mother (who lives with me). At 91, almost every one of her contemporaries is gone. She has one younger sibling left (out of seven) and that sib was just diagnosed with cancer. My mother used to be independent, but now she's become dependent on us for going places as she no longer drives and her mobility is waning. It's really hard for people in this situation - they still see themselves as young and can't believe how fast their lives have gone by. (And many of us will find ourselves in the same situation some day.) My siblings call her almost every day and a cousin checks in a couple of times a month, thankfully. It it helps keep her socially connected. She would be thrilled if some of her grandchildren would call once in a while. I think the younger generations aren't always used to using phones to actually talk, but that is what the older generations are used to. It's hard to explain how much an occasional heartfelt phone call would mean to an isolated elderly loved one. So just do it if you have the capability!
 
Wendy31 said:
I've been following this thread w/ some interest as DH's dad is elderly & has many different health conditions & issues. Right now, his mom is his primary caregiver.

Anyway, I don't mean to hijack the thread, but my elderly father-in-law was hospitalized in March for pneumonia, &, while in the hospital, just went severely downhill, mental health-wise. The neuro ultimately diagnosed him w/ "Sundown Syndrome." I had never heard of it before. But it was scary.

My mother-in-law is a saint when it comes to caregiving, & she knows exactly what medicine he takes when. She also knows what each medicine is for, & she adheres to a strict schedule & routine for him. She still maintains that one of the reasons he went so downhill in the hospital was due to his getting off-schedule on his medicine the night he was admitted & he didn't get (if I'm remembering correctly) 2 of his medicines until 6 hours past his normal routine.

Oh, & she'd NEVER take him off a medicine or even decrease the dose until she consulted his doctor.
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It's not uncommon to happen in the hospital, particularly with something like pneumonia because it alters the oxygen-carbon dioxide exchange, which alters the blood chemistry, and from there, a whole cascade of events can occur within the body. Of course there are other factors, like unfamiliarity, sleep alteration, medication alteration, disruption in routines, etc., thought to contribute. One of the best things that can happen, IME, in that situation, is to have someone familiar to them to stay with them overnight, if possible, as it can help re-orient them, and they're more trusting of people they know well, although there can be times when even family members become part of their disorientation, especially when actual dementia is involved.
 
Pea-n-Me said:
It's not uncommon to happen in the hospital, particularly with something like pneumonia because it alters the oxygen-carbon dioxide exchange, which alters the blood chemistry, and from there, a whole cascade of events can occur within the body. Of course there are other factors, like unfamiliarity, sleep alteration, medication alteration, disruption in routines, etc., thought to contribute. One of the best things that can happen, IME, in that situation, is to have someone familiar to them to stay with them overnight, if possible, as it can help re-orient them, and they're more trusting of people they know well, although there can be times when even family members become part of their disorientation, especially when actual dementia is involved.
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Oh, my mother-in-law basically never left. We had to beg her. One night she did let DH spend the night. Another night, one of his other brothers stayed. One afternoon, she went home to shower & run some other errands. But a family member was always with him.

And you're so right about the familiarity & the trust of family members over unfamiliar medical personnel. The nurses & techs would give his meds to either my MIL (or one of his sons if she just happened to not be in the room) to give to him - that was the only way he'd take them.

The window of his room overlooked a lot of "industrial" pipes & metal boxes on the roof from the other wing of the hospital. That was basically his "view." The neuro surmised that, for whatever reason, that view triggered him into thinking he was back at his former place of employment where he worked w/ a lot of machinery.
 


I have since talked with both sibs and my brother apologized for not contacting hospice. He admitted that he forgot about it. He said it is hard to realize just how sick a person is without being there with them. I told him that I understood. After seeing it first had just how back she was, I was amazed how she had deteriorated. I told them both that I am not trying to run things from here, but I would like an open line of communication between us all, with no animosity. He is fine with that. It will take him to get my sister on board.

I asked my sister why she never responds to texts and always leaves it to my brother. She finally answered and gave me an answer about the neurology appointment. They will talk to them about getting an MRI.

Just a couple days to cool off and things are now open between at least my brother & I. My sister will pout for another two weeks about this. Another thing she is made about is that my brother told her she had to come out and couldn't wait until August 16th. She was waiting until that date because her youngest daughter was due with her second son. My sister wanted to be there. But since that wasn't something that was a paying position, my brother gave her an ultimatum. He let her go play camp first aid person for 3 weeks in June, but now she was needed else were.

I have given a list of the falls that my mom had to my sister, so she has the total number of falls and how they happened.She can give this information to the neurologist when the appointment comes up.

My brother has promise to keep me up to date. That is all I want.
 
TipsyTraveler said:
Yes, I fear I may have confused you with another poster. I blame that mix up on the fact that you and that "other" poster both live in Florida and were involved in a falling out with a friend over Facebook photos and a civic group fundraiser that dragged on for more than a year and ended with court involvement, both have California-residing fathers with Alzheimer's, both have husbands who suffer from chronic headaches as a result of nerve damage caused by lipoma-removal surgery, you both have daughters who work at Home Depot, both help raise your granddaughters, and you both have contentious relationships with your siblings. Oh, and you both go by the name Mari. And even though you're not that "other" poster, you just so happen to know her IN REAL LIFE. But you're totally not the same person. ;);)

Then again, I don't even know why I'm responding when your comments weren't even directed towards me, TipsyTraveler. You were speaking to Topsy Travelers, a totally, completely different person even though we have an eerie number of similarities. Primarily, that we both spend way too much time drinking, traveling, and frustrating ourselves on the DIS. :badpc:

For the record, I, *ahem* Topsy ;), never said your counseling was court ordered.
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Some one who quoted you, then mis-read what you had posted and read it as court ordered counseling. My fingers were trying to type on my phone this morning and it came out Topsy Traveler instead of Tipsy Traveler. - You can ask Kellykins1218 what happened with the dance school thing. I heard she had a hand in part of the situation. My given name is Mairead.
 
DisneyWorldMimi said:
Some one who quoted you, then mis-read what you had posted and read it as court ordered counseling. My fingers were trying to type on my phone this morning and it came out Topsy Traveler instead of Tipsy Traveler. - You can ask Kellykins1218 what happened with the dance school thing. I heard she had a hand in part of the situation. My given name is Mairead.
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I knew it was a typo, I was just being playful.

I'll say the same thing I told you earlier this year... Please be careful about how much information you share about yourself or others online.

I'm glad to hear you feel like you made some positive steps in your most recent phone call with your brother. Best of luck.
 
DisneyWorldMimi said:
I have since talked with both sibs and my brother apologized for not contacting hospice. He admitted that he forgot about it. He said it is hard to realize just how sick a person is without being there with them. I told him that I understood. After seeing it first had just how back she was, I was amazed how she had deteriorated. I told them both that I am not trying to run things from here, but I would like an open line of communication between us all, with no animosity. He is fine with that. It will take him to get my sister on board.

I asked my sister why she never responds to texts and always leaves it to my brother. She finally answered and gave me an answer about the neurology appointment. They will talk to them about getting an MRI.

Just a couple days to cool off and things are now open between at least my brother & I. My sister will pout for another two weeks about this. Another thing she is made about is that my brother told her she had to come out and couldn't wait until August 16th. She was waiting until that date because her youngest daughter was due with her second son. My sister wanted to be there. But since that wasn't something that was a paying position, my brother gave her an ultimatum. He let her go play camp first aid person for 3 weeks in June, but now she was needed else were.

I have given a list of the falls that my mom had to my sister, so she has the total number of falls and how they happened.She can give this information to the neurologist when the appointment comes up.

My brother has promise to keep me up to date. That is all I want.
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Sounds great. I am glad that the communication that the three of you need is coming together. It will be hard seeing what happens with your parents, but being able to communicate and share with your siblings will be the best outcome.
 
DisneyWorldMimi said:
I have since talked with both sibs and my brother apologized for not contacting hospice. He admitted that he forgot about it. He said it is hard to realize just how sick a person is without being there with them. I told him that I understood. After seeing it first had just how back she was, I was amazed how she had deteriorated. I told them both that I am not trying to run things from here, but I would like an open line of communication between us all, with no animosity. He is fine with that. It will take him to get my sister on board.

I asked my sister why she never responds to texts and always leaves it to my brother. She finally answered and gave me an answer about the neurology appointment. They will talk to them about getting an MRI.

Just a couple days to cool off and things are now open between at least my brother & I. My sister will pout for another two weeks about this. Another thing she is made about is that my brother told her she had to come out and couldn't wait until August 16th. She was waiting until that date because her youngest daughter was due with her second son. My sister wanted to be there. But since that wasn't something that was a paying position, my brother gave her an ultimatum. He let her go play camp first aid person for 3 weeks in June, but now she was needed else were.

I have given a list of the falls that my mom had to my sister, so she has the total number of falls and how they happened.She can give this information to the neurologist when the appointment comes up.

My brother has promise to keep me up to date. That is all I want.
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???
 
Wendy31 said:
I've been following this thread w/ some interest as DH's dad is elderly & has many different health conditions & issues. Right now, his mom is his primary caregiver.

Anyway, I don't mean to hijack the thread, but my elderly father-in-law was hospitalized in March for pneumonia, &, while in the hospital, just went severely downhill, mental health-wise. The neuro ultimately diagnosed him w/ "Sundown Syndrome." I had never heard of it before. But it was scary.

My mother-in-law is a saint when it comes to caregiving, & she knows exactly what medicine he takes when. She also knows what each medicine is for, & she adheres to a strict schedule & routine for him. She still maintains that one of the reasons he went so downhill in the hospital was due to his getting off-schedule on his medicine the night he was admitted & he didn't get (if I'm remembering correctly) 2 of his medicines until 6 hours past his normal routine.

Oh, & she'd NEVER take him off a medicine or even decrease the dose until she consulted his doctor.
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I hope your father in law is improving somewhat at least.

It is common for elderly patients to have a cognition decline simply because of a change in surroundings like a hospital stay. Of course for something like that they are also having a medical crisis at the same time so that may have some affect as well. Many times they experience a rebound effect as their medical condition improves and are able to either return to familiar surroundings or return home.

ETA I see Pea already responded with information in a similar vein. Good info.
 
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NHdisneylover said:
I wil keep this short. I voted other. Normally I think people should be updated--but after you went in and stopped your dad's medications without even consulting his doctor (this can be very dangerous) and it is clear you simply do not believe your father was threatening with your mother based on your past experiences with him (that can flip in a heartbeat with alzheimers--I have seen it first hand in my grandfather) and are willing to make huge decisions and criticize when you are not there to see the day to day hell that it probably is for those dealing with all this----I think it is reasonable that they kept you out of the loop. Sorry.
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I voted other, and quoted above because these are exactly my thoughts.
 
cabanafrau said:
I hope your father in law is improving somewhat at least.

It is common for elderly patients to have a cognition decline simply because of a change in surroundings like a hospital stay. Of course for something like that they are also having a medical crisis at the same time so that may have some affect as well. Many times they experience a rebound effect as their medical condition improves and are able to either return to familiar surroundings or return home.
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Agreed. My grandmother did this several times when hospitalized during the final decade of her life. She always recovered when she went home following her hospital stay.

I've seen this countless times as a nurse also. Not only can it be a frightening experience for family, but it's frightening for the person experiencing these changes. I've had older 100% lucid patients who came in for simple overnight procedures (like a hernia repair or similar) who experience "sundowners" events and they were horrified when their clarity returned. It's a scary thing knowing that you cannot always control your own mind. And... there's no way to know who might experience these types of symptoms/events until it happens.

These events do seem to relate to:
1. disorientation (change in environment), combined with
2. stress on the body (illness or injury),
3. changes to or addition of medications,
4. compounded (I believe) by lack of rest/recovery time.

This last one is underappreciated, I think...

I work on a surgical floor, with patients who have had various surgical procedures from hernia repairs to hysterectomies to knee replacements or surgically repaired fractures.
I'm required to assess my patients every four hours - i.e. fully wake them, check vitals and their response to our treatment (like ensuring the circulation status of an affected limb - you can't really ensure all is well if your patient is sleeping), monitor their orientation status because clots and strokes are always a potential risk, etc)
How many of us would respond well to be jarred awake every four hours, possibly for nights on end?
We have IV pumps or other equipment which will beep through the night. We change out fluids or antibiotics (which includes scanning arm bands and confirming the identity of our patient. We try to combine all these interruptions, but it's still an interruption.
The bed is different, the blankets are different, the lights are different, their are different sounds. All of which can interfere with sleep (shoot, you can experience this on vacation).
There are people walking outside the door with rolling equipment at all hours. There are noises from the room next door (or even from a few doors down).
AND I'm required to perform hourly room checks (even if I just lean in quietly this can disrupt light sleepers).

Some people can be reoriented quickly, others may remain confused throughout their stay.
Full on hallucinations (there are cats climbing on my walls) are not uncommon.
Some patients fluctuate between oriented and disoriented. Some can be reoriented quickly with a few reminders (you had surgery, you were in an accident, I'm a nurse, see my stethoscope?)
Some trust NO one, not even family ("you're all in on it"... That's a rough one.)

Wendy31 said:
Oh, my mother-in-law basically never left. We had to beg her. One night she did let DH spend the night. Another night, one of his other brothers stayed. One afternoon, she went home to shower & run some other errands. But a family member was always with him.

And you're so right about the familiarity & the trust of family members over unfamiliar medical personnel. The nurses & techs would give his meds to either my MIL (or one of his sons if she just happened to not be in the room) to give to him - that was the only way he'd take them.

The window of his room overlooked a lot of "industrial" pipes & metal boxes on the roof from the other wing of the hospital. That was basically his "view." The neuro surmised that, for whatever reason, that view triggered him into thinking he was back at his former place of employment where he worked w/ a lot of machinery.
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On two occasions, I've even had the family of patients, (someone like your MIL...) who suffered a sundowners type event while staying at the hospital with a family member. That's quite an experience for everyone involved. They may not be our patient, but their health and safety is in our hands also.


Sorry to get so far off track, but I can't help sharing when this topic comes up, it's a complication of hospitalization that is near and dear to me since I see it so often and the stress it can cause. Blessedly, we often have only to wait for dawn (or discharge) for things to improve.

In the case of alzheimers/dementia (like the OP's father) this is a process that is not going to improve or change. Imagine dealing with these types of symptoms day in and day out for years as a primary caregiver when you yourself are elderly. It's no surprise the OP's mother is struggling. I hope and pray their family can come together to give her more support and assistance.
God Bless all the posters who have shared in this thread, having been caregivers to family with these issues. You are a true blessing to your loved ones...
 
DisneyWorldMimi said:
Some one who quoted you, then mis-read what you had posted and read it as court ordered counseling. My fingers were trying to type on my phone this morning and it came out Topsy Traveler instead of Tipsy Traveler. - You can ask Kellykins1218 what happened with the dance school thing. I heard she had a hand in part of the situation. My given name is Mairead.
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I believe I was the one who quoted Tipsy Traveler. I never said court ordered counseling. Below is that part of my post. If you notice, I said you are seeing a therapist for the court action. You did mention that you were seeing a therapist to help you get through the whole court deal and the hurt it caused you. I never said it was court ordered.

I wonder if this misreading, misinterpreting what people say and write and then jumping to conclusions are part of the issues you have often posted about, both as this user and your previous screen name. Not saying that to be mean, but you may want to discuss with somebody why you hear things differently than what others are actually saying.

Glad to hear you are working on communication with your siblings. That will go a long way in helping your parents be comfortable in these later years.
Hrhpd said:
You said you are seeing a therapist for the court action. I would add discussing your parents' situation too. Is there a link? Are you trying too hard to be right with your parents because you have recently gone through a situation that was traumatic to your self-esteem? Going through something like that with your friend that involves courts/restraining orders and a lot of hurt could seriously compromise your rational decision making during another trying experience with your parents following so close on the heels of your situation with your friend. Talk to your therapist.
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I think all 3 siblings have been in denial about how much their parents have aged and declined...... and I totally get that. It took me a few visits to accept that my vibrant independent mother wasn't that person any more and needed more help than she was getting. It sounds like OP and brother are on the same page now and that's significant progress - good for you OP. And that's even better news for your parents.
DisneyWorldMimi said:
I have since talked with both sibs and my brother apologized for not contacting hospice. He admitted that he forgot about it. He said it is hard to realize just how sick a person is without being there with them. I told him that I understood. After seeing it first had just how back she was, I was amazed how she had deteriorated. I told them both that I am not trying to run things from here, but I would like an open line of communication between us all, with no animosity. He is fine with that. It will take him to get my sister on board
.....................
My brother has promise to keep me up to date. That is all I want.
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If lack of communication was what was keeping your parents from getting the care they needed, that seems to have been resolved. Which is GREAT. But your parents are still living in a situation that doesn't seem to give them the care they need and communication alone isn't going to solve that. If the 3 of you agree with what needs to happen now with their care and living arrangements and present a unified front to them, there's hope that the things that need to improve WILL.

Good luck to you all.
 
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indimom said:
Agreed. My grandmother did this several times when hospitalized during the final decade of her life. She always recovered when she went home following her hospital stay.

I've seen this countless times as a nurse also. Not only can it be a frightening experience for family, but it's frightening for the person experiencing these changes. I've had older 100% lucid patients who came in for simple overnight procedures (like a hernia repair or similar) who experience "sundowners" events and they were horrified when their clarity returned. It's a scary thing knowing that you cannot always control your own mind. And... there's no way to know who might experience these types of symptoms/events until it happens.

These events do seem to relate to:
1. disorientation (change in environment), combined with
2. stress on the body (illness or injury),
3. changes to or addition of medications,
4. compounded (I believe) by lack of rest/recovery time.

This last one is underappreciated, I think...

I work on a surgical floor, with patients who have had various surgical procedures from hernia repairs to hysterectomies to knee replacements or surgically repaired fractures.
I'm required to assess my patients every four hours - i.e. fully wake them, check vitals and their response to our treatment (like ensuring the circulation status of an affected limb - you can't really ensure all is well if your patient is sleeping), monitor their orientation status because clots and strokes are always a potential risk, etc)
How many of us would respond well to be jarred awake every four hours, possibly for nights on end?
We have IV pumps or other equipment which will beep through the night. We change out fluids or antibiotics (which includes scanning arm bands and confirming the identity of our patient. We try to combine all these interruptions, but it's still an interruption.
The bed is different, the blankets are different, the lights are different, their are different sounds. All of which can interfere with sleep (shoot, you can experience this on vacation).
There are people walking outside the door with rolling equipment at all hours. There are noises from the room next door (or even from a few doors down).
AND I'm required to perform hourly room checks (even if I just lean in quietly this can disrupt light sleepers).

Some people can be reoriented quickly, others may remain confused throughout their stay.
Full on hallucinations (there are cats climbing on my walls) are not uncommon.
Some patients fluctuate between oriented and disoriented. Some can be reoriented quickly with a few reminders (you had surgery, you were in an accident, I'm a nurse, see my stethoscope?)
Some trust NO one, not even family ("you're all in on it"... That's a rough one.)



On two occasions, I've even had the family of patients, (someone like your MIL...) who suffered a sundowners type event while staying at the hospital with a family member. That's quite an experience for everyone involved. They may not be our patient, but their health and safety is in our hands also.


Sorry to get so far off track, but I can't help sharing when this topic comes up, it's a complication of hospitalization that is near and dear to me since I see it so often and the stress it can cause. Blessedly, we often have only to wait for dawn (or discharge) for things to improve.

In the case of alzheimers/dementia (like the OP's father) this is a process that is not going to improve or change. Imagine dealing with these types of symptoms day in and day out for years as a primary caregiver when you yourself are elderly. It's no surprise the OP's mother is struggling. I hope and pray their family can come together to give her more support and assistance.
God Bless all the posters who have shared in this thread, having been caregivers to family with these issues. You are a true blessing to your loved ones...
Click to expand...


I run into this on a fairly regular basis when you have some type of a battle raging between siblings, generally over control and money, and one or more siblings has an issue with another sibling having control over medical and financial issues. The parent has an illness or injury causing a hospital stay, confusion or dementia symptoms crop up, they eventually get transferred to rehab or temporary nursing care to recuperate, the mental confusion continues or worsens and the disgruntled siblings file suit to be appointed guardian and/or conservator. We have to be careful about any assessments that are done during this period of time because often much of the symptoms improve radically or disappear altogether once the patient starts healing medically and is able to take in a steady source of nutrition and hydration.
 
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