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

[Pea-n-Me]

Along the same lines, just going to re-post a line from the article I posted last night that was easy to miss:

One study indicates that agitation from sundown syndrome is a common cause of institutionalization of older patients suffering from dementia.

Again, these troubling behaviors are very, very difficult to deal with day in and day out. Even people who are normally mild-mannered can turn into violent, foul-mouthed, highly agitated individuals when they're in their disoriented state. If you get in their way to try to stop them, you're apt to get a punch in the face.

People who work with individuals in this state know how this goes, as it is not uncommon.

So the question then becomes: which will be better for this particular patient? Staying at home in the care of loved ones, or being permanently placed into a nursing home or other facility? These are the types of thoughts that go into starting a patient on something like an "anti-psychotic" medication that's been shown in many cases to help these behaviors, especially when you have a loving family who's willing to keep them at home. Are there some risks? Yes, there can be, but there are also risks to people in agitated, dillusional states, as well as those caring for them, without it. So the risk-benefit will always be weighed before starting that type of medication (or any medication).

With Alzheimer's Disease, there are changes to the brain. Years ago, a diagnosis of Alzheimer's could only truly be made at autopsy, by studying these changes to see if they fit the patterns of known elements to the disease. Now it's more common to say someone has it based on behaviors and other findings.

But when "neuro-psychiatric" behaviors are described, it makes sense that many of them are coming from these changes in the brain, so it makes sense that a medication that helps "psychoses" may help these, too.

When you look at it in this light, it's not as disturbing as when you look at it in a vacuum. And the name or category of a drug should really be less disturbing than violent behavior changes are, but unless one is there to experience them, they're hard to understand, especially in those we love.

 

[Pea-n-Me]

And just to add some visuals:

 

[Poohlove]

I apologize in advance for the lengthy post:

I have posted this on another thread but thought maybe it might offer some insight here too. When my grandmother was "living" with her boyfriend we rarely saw her. He didn't like all of us (not that there was a parade but she has 2 married children and 2 grandchildren who take an active part in her life) coming t0 his house. It isn't the dynamic he had with his family and that is fine. A temporary solution to this was that they would go to their luncheon and then stop by my grandmothers house where my aunt was living, full time at that time, and my grandmother would shower and get clothes and basically check in for about an hour a day Monday-Friday. These visits started dwindling until within a few months time they stopped altogether. To try and keep the peace and respect Ed's wishes we would go over his house once a week or so and check their groceries, going out for whatever was needed. Everything seemed to be going along pretty well for while and we kept this routine up for quite some time. Her mental decline started out pretty slow, there were little things here and there. She would have bumps and bruises she couldn't explain. Ed could barely get himself around so we knew he wasn't abusing her. They started staying at home more because she became harder for him to manage on a day to day basis but he didn't tell anyone anything, she would be up all night roaming the house and cursing at people that weren't there and things like that. She would follow him everywhere, even to the bathroom. My dad and aunt alternated weekends which was their designated drop in time and there was little to no communication between them. At this time my grandmom was cognizant enough that when talking to her about going home where she could be cared for upset her tremendously and upset Ed as well but not aware enough to understand that it wasn't safe for her to be there. As a Christmas gift for the two of them two years ago I made them a ton of homemade food and portioned it out so that all they had to do was put it into the microwave. My sister and I went to Ed's on Christmas Day (it was my aunt's holiday, they split the holidays) to take over presents expecting for my aunt and her husband to be there. I hadn't seen my Grandmom and Ed since Thanksgiving and I was shocked at the difference. Apparently my aunt left ham and cheese sandwiches for them for dinner on Christmas day and went to dinner at her son's house with no intention to return until her next scheduled visit. At this point in time Ed could barely get around, he was having terrible problems with his feet and lower legs due to diabetes. My grandmother was totally gone mentally. She was grateful and thanked us for everything but she had no idea who we were. We had lunch with them and took her outside for a walk, she loved to see all of the decorations and the people who were out and about. Satisfied that they would be ok for the rest of the day we went immediately to our dad's before everyone was to arrive for dinner and I had a rather difficult talk with him about the situation. Over the next few weeks he and my aunt had a series of heart to hearts which all came back to them thinking it would be too upsetting for my grandmom to be taken from Ed's. This all changed when my aunt got to his house one day to not be able to wake my grandmom from a nap. Her doctor was called and he came out right away (everything was fine, she was just very lethargic). He told my aunt that my grandmother was seriously dehydrated and malnourished. If this situation didn't change it would take a turn for the worse sooner rather than later. They got her drinking and eating and then took her home within a few days when she was stronger. Her doctor came back out and re-evaluated her giving her 6 months tops, she was sleeping so much and not interacting with anyone and barely eating. Within a week of being home and getting fluids into her she started to rally. She started eating - a lot at that- and before we knew it she was up and moving on her own. Between us and hospice there was a new face everyday. Several months later because she was doing so well hospice was actually terminated. She had a few moments of clarity here and there but now they are gone. Physically she is in good shape but her mind is completely gone. (Ed is mentally sharp as a tack but after 90 some years his parts are starting to wear out.) Though I will point out that when my dad starts to bad mouth my aunt my grandmother's whole body language changes, she knows. Often times she will even tell him to be nice. It is for that reason I believe she is trapped in there somewhere and I am very careful with my words in front of her.

I say all of this because it would be very easy, as in a lot of other situations, to lay blame. Who did this, didn't do that. Whose responsibility was what, when was the proper time to do certain things. You have to be the bigger person and leave you gripes to a later time or let them go altogether (that has my vote). The most important task at hand is getting your parents into a safe environment. You have made an important step in reaching out to your brother and I hope that you continue to make that forward progress. This is an incredibly frustrating illness that our loved ones are suffering from.

 

[DisneyWorldMimi]

Yep, I sure did
Funny that you'd know that since you claim to NOT be the stalker with a restraining order against her

I know both women involved in that. I am better friends with Maridw than the dance teacher. Copies of the emails were submitted in court and Maridw showed them to me. She found out who you were from your email address. Plus I was involved with the Women's Club and saw a totally different side to the dance teacher that corresponded with the accusations Maridw brought up. Just glad I was not in the middle of that. I have distanced myself from both. Not as much from M, but definitely the dance teacher.

 

[DisneyWorldMimi]

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.

I did not have another screen name. I lurker for quite a few years with out signing up. I know Maridw and the person she was talking about. I watched that thing blow up big and fast. I will not say what my opinion of the other person, but in one of her posts, Maridw hits it right on the head as to just what type of person she is. Maridw & I were close friends but it has been suspended in a manner because we don't have as much in common any more.

 

[kaytieeldr]

Unfortunately because of the type of sole they had, she kept catching her foot on the ground. It didn't matter what type of surface, she would catch the toe of her shoe and stumble. She liked them because she could get them on easy and could wear them around the house and be comfortable. When she started getting physical therapy for her sciatica, they told her those were causing her to trip. That they were just a little too big because they were a combination size 9/10 instead of a just a 9 or a 10. As far as I know she has only told her doctor about them when she goes for a normal appointment but has never had anything else done.

Then why do you keep insisting she needs an MRI????? She.needs.different.shoes. No type or amount f medical testing is going to indicate this. There are dozens, if not hundreds, of different reasons why people fall. Your mother has zero blood/genetic connection with your late mother-in-law. There is absolutely no reasonable reason to think your mother has a brain bleed

 

[cabanafrau]

Then why do you keep insisting she needs an MRI????? She.needs.different.shoes. No type or amount f medical testing is going to indicate this. There are dozens, if not hundreds, of different reasons why people fall. Your mother has zero blood/genetic connection with your late mother-in-law. There is absolutely no reasonable reason to think your mother has a brain bleed

Even if there were a genetic connection between two people, a brain bleed caused by a fall has no genesis in genetics.

 

[Hrhpd]

I did not have another screen name. I lurker for quite a few years with out signing up. I know Maridw and the person she was talking about. I watched that thing blow up big and fast. I will not say what my opinion of the other person, but in one of her posts, Maridw hits it right on the head as to just what type of person she is. Maridw & I were close friends but it has been suspended in a manner because we don't have as much in common any more.

Got it. So, since the two of you were friends, then I assume you were going to write the book about the history of the garden association, published with your own money, together? Because both of you said that the project you wanted to work on that got shut down was writing a book, publishing it with your own monies.

Did you ever write the book?

You have to admit that is quite the coincidence that two good friends are heartbroken over a best friend and her business, both were told no on a project they wanted to do for a civic organization and not only that, but both friends have restraining orders and court proceedings against them. I hope you can see why it is easy to assume you are the same person.

I think what is confusing people is that your 6th post ever under this screen name talks about how a previous post was used against you in court. Yet, the 5 previous posts had nothing to do with what you were saying. That is what makes people assume that you had a previous screen name, one that you regretted posting under.

So, I apologize for the confusion. If you say you are not MariDW, well then, I guess I should believe you. And again apologize for being one of those helping to take this thread off track. I am glad you are working things out with your parents and siblings.

Yes and No. Yes, because I should have worded it differently and the way I wrote it was used against me. No, because I was very hurt by what I considered my best friend had done. Someone from here sent her the post and my now ex-best friend stabbed me in the back. Ended up in court and she lied about some things, but because of the way I phrased something, I was in the wrong. What hurt me the most was that she actually thought that I was capable of violence against her. I was caught off guard because there was an addition to the court documents that was supposed to be submitted to me prior to the court date and I did not get it. When it was submitted, I was supposed to receive a copy, but the court did not send it to me. Once everything is over, my husband will be filling a complaint with the court.

PS.. take heed of what you posted on the regret thread and what TipsyTraveler said. You are posting way too much information. You have already posted enough information for someone to find you. Don't regret anymore postings.

 

[Kellykins1218]

She found out who you were from your email address.

Totally not true. Nobody had to track me through my email address because I didn't report you anonymously. I don't hide.

 

[Aliceacc]

Even for the DIS, this thread has become ... I'm not even sure what to call it. I'm very lost.

Anyone brave enough to give me a "for dummies" synopsis??? We're dropping my son off at college, my daughter just learned that her best friends house is up for sale and I'm not there to hug her, and I simply don't have the time or emotional energy to sort out all the drama in this thread. Yet, like any train wreck, I cNt turn away.

 

[SirDuff]

Even for the DIS, this thread has become ... I'm not even sure what to call it. I'm very lost.

Anyone brave enough to give me a "for dummies" synopsis??? We're dropping my son off at college, my daughter just learned that her best friends house is up for sale and I'm not there to hug her, and I simply don't have the time or emotional energy to sort out all the drama in this thread. Yet, like any train wreck, I cNt turn away.

I was about to ask if I am the only one who has completely lost the plot. Happy to know that I'm not.

 

[llcoolj]

Here's the rundown from the view of a long-time lurker:

OP parents are in failing health in CA
OP lives in FL panhandle
OP is angry at siblings for reasons both current and ancient
OP rarely visits and on most recent visit took father off psychotropic medication without any medical advice
OP insists mother is cognizant when she agrees with OP, but is declining cognitively in other cases
DIS miracle-all posters are unified in dismay at OP's medication change
OP refuses excellent advice and adds backstory of misdeeds of siblings
OP insists she can't visit or help more than long-distance demands of information due to cats, husband, daughter and granddaughter
OP's brother apologizes and lines of communication are restored
OP slams sister for not wanting to miss the birth of her second grandchild
Other posters recognize remarkable similarities between OP and another username with very specific similarities
OP insists that while she knows the other poster and it isn't her, she agrees with her non-doppleganger

 

[mom2rtk]

Other posters recognize remarkable similarities between OP and another username with very specific similarities
OP insists that while she knows the other poster and it isn't her, she agrees with her non-doppleganger

This is the part I'm lost on. Anyone want to PM me a summary?

 

[NHdisneylover]

Here's the rundown from the view of a long-time lurker:

OP parents are in failing health in CA
OP lives in FL panhandle
OP is angry at siblings for reasons both current and ancient
OP rarely visits and on most recent visit took father off psychotropic medication without any medical advice
OP insists mother is cognizant when she agrees with OP, but is declining cognitively in other cases
DIS miracle-all posters are unified in dismay at OP's medication change
OP refuses excellent advice and adds backstory of misdeeds of siblings
OP insists she can't visit or help more than long-distance demands of information due to cats, husband, daughter and granddaughter
OP's brother apologizes and lines of communication are restored
OP slams sister for not wanting to miss the birth of her second grandchild
Other posters recognize remarkable similarities between OP and another username with very specific similarities
OP insists that while she knows the other poster and it isn't her, she agrees with her non-doppleganger

and it seems that OP is acusing some other poster who was somehow involved in all that mess with the former name of stalking and reporitng something somewhere or some such? I had all the rest but that part confuses me.

And, yes, it is remarkable how similar the two posters are---and that the OP personally knows the other person (what are the odds!) but is not her.

But, history aside (if it is there at all)----just what is in THIS thread makes it clear that either the OP needs to prioritize her parents' health care and get out there and do the work herself OR she needs to back off and be supportive of those who are there and trust that the doctors and professionals workign with her parents know what they are doing.

 

[morgan98]

and it seems that OP is acusing some other poster who was sumehow involved in all that mess with the former name of stalking and reporitng something somewhere or some such? I had all the rest but that part confuses me.

And, yes, it is remarkable how similar the two posters are---and that the OP personally knows the other person (what are the odds!) but is not her

Yes and totally agrees with the other person, of course. But they are different people. It is very strange indeed.

 

[TipsyTraveler]

Once upon a time there was a DISer named Maridw. She posted, over the better part of a year, the details of a real life falling out she was having with a friend. And when I say details, I mean specifics that are completely inappropriate to post on message boards like names and other identifying info that make it easy to doxx the involved parties. It was a convoluted story involving a dance studio, a garden club, a fundraiser... but mostly just drama, drama, drama. Everyone told her to let it go. It'd been going on for months, it was clear the friendship was over, and Maridw was taking things to an obsessive level. The posts continued.

I don't know if it was just because of the identifying info or if Maridw's posts were getting nastier/threatening, but another DISer contacted the real life friend to let her know what was happening online. This, and no doubt whatever was going on in the real world, resulted in court involvement and Maridw being slapped with a restraining order. Maridw stopped posting.

This past February, I was reading a thread asking if anyone ever regretted anything they'd ever posted on the DIS. A brand new user, DisneyWorldMimi, said she'd gotten in trouble with the courts over {story that matches the above details}. I recognized this as Maridw's story and told her she needed to be careful with what info she posted online, that she was already repeating the same mistakes. She told me that even though her situation was very similar to Maridw's situation, and she actually happens to know Maridw in real life and they have the same name, that's not her. They're different people. That's where the story left off until this thread popped up.

 

[NHdisneylover]

Once upon a time there was a DISer named Maridw. She posted, over the better part of a year, the details of a real life falling out she was having with a friend. And when I say details, I mean specifics that are completely inappropriate to post on message boards like names and other identifying info that make it easy to doxx the involved parties. It was a convoluted story involving a dance studio, a garden club, a fundraiser... but mostly just drama, drama, drama. Everyone told her to let it go. It'd been going on for months, it was clear the friendship was over, and Maridw was taking things to an obsessive level. The posts continued.

I don't know if it was just because of the identifying info or if Maridw's posts were getting nastier/threatening, but another DISer contacted the real life friend to let her know what was happening online. This, and no doubt whatever was going on in the real world, resulted in court involvement and Maridw being slapped with a restraining order. Maridw stopped posting.

This past February, I was reading a thread asking if anyone ever regretted anything they'd ever posted on the DIS. A brand new user, DisneyWorldMimi, said she'd gotten in trouble with the courts over {story that matches the above details}. I recognized this as Maridw's story and told her she needed to be careful with what info she posted online, that she was already repeating the same mistakes. She told me that even though her situation was very similar to Maridw's situation, and she actually happens to know Maridw in real life and they have the same name, that's not her. They're different people. That's where the story left off until this thread popped up.

and that fills in all the details I was missing, and what the OP was refering to in regards to one prior poster--thank you for that.

 

[King Schultz]

Once upon a time there was a DISer named Maridw. She posted, over the better part of a year, the details of a real life falling out she was having with a friend. And when I say details, I mean specifics that are completely inappropriate to post on message boards like names and other identifying info that make it easy to doxx the involved parties. It was a convoluted story involving a dance studio, a garden club, a fundraiser... but mostly just drama, drama, drama. Everyone told her to let it go. It'd been going on for months, it was clear the friendship was over, and Maridw was taking things to an obsessive level. The posts continued.

I don't know if it was just because of the identifying info or if Maridw's posts were getting nastier/threatening, but another DISer contacted the real life friend to let her know what was happening online. This, and no doubt whatever was going on in the real world, resulted in court involvement and Maridw being slapped with a restraining order. Maridw stopped posting.

This past February, I was reading a thread asking if anyone ever regretted anything they'd ever posted on the DIS. A brand new user, DisneyWorldMimi, said she'd gotten in trouble with the courts over {story that matches the above details}. I recognized this as Maridw's story and told her she needed to be careful with what info she posted online, that she was already repeating the same mistakes. She told me that even though her situation was very similar to Maridw's situation, and she actually happens to know Maridw in real life and they have the same name, that's not her. They're different people. That's where the story left off until this thread popped up.

And the OP stated her childhood nick=name was "Mari".

It IS a small world after all!

 

[Disney Dynamite]

Has anyone else seen The Matrix? For some bizarre reason, I was thinking about this quote from that movie: "You take the blue pill - the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill - you stay in Wonderland and I show you how deep the rabbit-hole goes." The rabbit hole just seems to be getting deeper and deeper in this thread.

 

[SirDuff]

Once upon a time there was a DISer named Maridw. She posted, over the better part of a year, the details of a real life falling out she was having with a friend. And when I say details, I mean specifics that are completely inappropriate to post on message boards like names and other identifying info that make it easy to doxx the involved parties. It was a convoluted story involving a dance studio, a garden club, a fundraiser... but mostly just drama, drama, drama. Everyone told her to let it go. It'd been going on for months, it was clear the friendship was over, and Maridw was taking things to an obsessive level. The posts continued.

I don't know if it was just because of the identifying info or if Maridw's posts were getting nastier/threatening, but another DISer contacted the real life friend to let her know what was happening online. This, and no doubt whatever was going on in the real world, resulted in court involvement and Maridw being slapped with a restraining order. Maridw stopped posting.

This past February, I was reading a thread asking if anyone ever regretted anything they'd ever posted on the DIS. A brand new user, DisneyWorldMimi, said she'd gotten in trouble with the courts over {story that matches the above details}. I recognized this as Maridw's story and told her she needed to be careful with what info she posted online, that she was already repeating the same mistakes. She told me that even though her situation was very similar to Maridw's situation, and she actually happens to know Maridw in real life and they have the same name, that's not her. They're different people. That's where the story left off until this thread popped up.

Thanks - those were the details that I had no clue about.