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Old 09-19-2015, 07:13 AM
 
Location: Wonderland
44,452 posts, read 35,922,975 times
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Quote:
Originally Posted by maggiekate View Post
I wonder if the cousin has any idea of how hard this will be. Will the cousin be paid if so keep super records.
The cousin SHOULD be paid. Not that she could probably ever be paid what the job is really worth, but she deserves something other than a "jewel in her crown" in heaven.
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Old 09-19-2015, 09:12 PM
 
16,992 posts, read 20,612,244 times
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Quote:
Originally Posted by KathrynAragon View Post
OK, raubre, regardless of what "services" you're talking about, you are saying that you will come visit a couple of times a year, on your terms, that you'll hop on a plane if there's an emergency, and that your cousin and her mom are going to assume the daily (and it is daily) care of your mom.

That's all fine in some circumstances and may be fine in yours, but what seain is saying is that if that's the way it's going to be, you've basically reneged on having a say in much of anything. And the reason is because what you're distancing yourself from is a HUGE burden on other people. HUGE.

By the way, toward the end, emergencies come every few months, sometimes every few weeks. Heck, for awhile in our family, dealing with the same situation, the emergencies came every few DAYS. (My MIL had two strokes within ten days, for example - if that happened to your mom and you'd just gotten back home from flying out for the first one, do you mean you'd take off work some more, hop back on a plane and come right back out and stay for an indeterminate amount of time?)

Get this scenario with my elderly FIL who just passed away: My husband was out of town on business - very important business which is very important to our budget. His dad took a turn for the worse. He cut the trip short, which cost us several thousand dollars personally - like $8,000. He came home. Dad stabilized. My husband was able to connect with the customer and booked a flight and flew back out to the east coast, hoping to earn some of that lost income back.

His dad died while he was in flight. I called the airport and they met him at the gate and took him right back to another gate to come right back home (that was another $400 by the way). Then we got to pay for a funeral - we will eventually get reimbursed but so far we're THOUSANDS of dollars in the hole. We are also out the price of several airline tickets (I have actually lost count of all that) and since we're self employed, no one is going to reimburse us for that. Plus we lost the income for that month. We're just lucky we didn't lose the customer.

What people are telling you is that you need to understand the full scope of what's happening. You don't owe anyone here an explanation of why you are so estranged from your mom, and why you think it's a good idea for your cousin and aunt to take on basically the full responsibility for your mom's final years (and yes, this can go on for years), but I guess several of us want you to really understand just what it is you're leaving in the hands of other people.

This ordeal with my inlaws has been one of the worst experiences of my life. I have only been a part of it because it's my husband's parents and it's my obligation and just the right thing to do, but I can assure you that it's such a huge undertaking that I would not do it for an aunt or a cousin or probably even a sibling - because it takes so much out of a person, and I still have my own parents' and their elder years ahead of me. It's been more stressful to me than when I went through a divorce - and that's saying a lot.

Kathyrn,

First off so sorry for your loss and all that stress.

OP, you need to listen to this, I apologize as I misunderstood when you said services, but I see a lot of "all about me" in your attitude. KA is right you don't owe anyone an explanation on here as to why things are the way they are.

But you're sure dumping a lot on other people. Just because your cousin has a background dealing with certain issues, doesn't mean she wants to dive head long in this.

Quote:
Originally Posted by KathrynAragon View Post
The cousin SHOULD be paid. Not that she could probably ever be paid what the job is really worth, but she deserves something other than a "jewel in her crown" in heaven.

Absolutely. It amazes me when people make comments that someone should just do all this for free, or when a caregiver(usually an adult child) is living in the parent's house because they can't live alone and some idiot(usually another sibling) says "well they're getting free room and board"....sigh.

As if a free room(which was empty anyway) and food make up for the endless hours and many times having your own health impacted comes close to what the caregiver does.
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Old 09-19-2015, 09:41 PM
 
Location: Portland, OR
4,276 posts, read 6,564,842 times
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Quote:
Originally Posted by seain dublin View Post
Kathyrn,

First off so sorry for your loss and all that stress.

OP, you need to listen to this, I apologize as I misunderstood when you said services, but I see a lot of "all about me" in your attitude. KA is right you don't owe anyone an explanation on here as to why things are the way they are.

But you're sure dumping a lot on other people. Just because your cousin has a background dealing with certain issues, doesn't mean she wants to dive head long in this.




Absolutely. It amazes me when people make comments that someone should just do all this for free, or when a caregiver(usually an adult child) is living in the parent's house because they can't live alone and some idiot(usually another sibling) says "well they're getting free room and board"....sigh.

As if a free room(which was empty anyway) and food make up for the endless hours and many times having your own health impacted comes close to what the caregiver does.
First off I did not dump anything off on anyone. My cousin was the one who informed me that she was going to be POA. You people are so quick to jump on people who are seeking advice and tell people how things should be done when you know absolutely know zilch about it.

I am sorry I posted here. I should have known better.
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Old 09-19-2015, 10:17 PM
 
Location: Wonderland
44,452 posts, read 35,922,975 times
Reputation: 62843
I'm sorry you're not listening to the advice of those who really do know what your family is in for.
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Old 09-19-2015, 11:01 PM
 
16,992 posts, read 20,612,244 times
Reputation: 33956
Quote:
Originally Posted by raubre View Post
First off I did not dump anything off on anyone. My cousin was the one who informed me that she was going to be POA. You people are so quick to jump on people who are seeking advice and tell people how things should be done when you know absolutely know zilch about it.

I am sorry I posted here. I should have known better.
No, you didn't like what you were told, by people who have been through this. That's the problem.

You may not like what people say, and if your mother is a difficult woman I can see why you don't want to be involved, but you don't come on here and tell people who have been through caregiving or still are caregiving they don't know the drill...how dare you.

Quote:
Originally Posted by KathrynAragon View Post
I'm sorry you're not listening to the advice of those who really do know what your family is in for.
Really a shame, we have now have ways of getting some helpful advice from those who have first hand experience thanks to the Internet. Yet there are some who only want to hear what they want to hear.

Quote:
Originally Posted by raubre View Post
My cousin knows what she's doing. She's a teachermwho works with special needs students (life skills teacher) and have worked with social services and financial situations before. She pretty much knows the ins and outs of the legal system.
This is exactly what I was talking about. Ever think she has enough on her plate? That she doesn't want to take on anymore? And if she does take this on she needs to be compensated.

At the end of the day she is the niece, you're the son.
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Old 09-20-2015, 12:25 AM
 
Location: Cochise county, AZ
4,942 posts, read 3,425,299 times
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I feel so bad that I was not a better daughter & sister. I was going through a lot of work problems & said to myself that my sister was getting free rent etc. It wasn't until I was laid off & called on family for help & moved in with family just how much my sister needed help. Our mother had dementia & it was really wearing my sister down.

What one of my brother's did was to let them stay in a house he owned & he also paid for anything expensive that came up with her, bless his heart. It might be something you could think about.
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Old 09-20-2015, 01:03 AM
 
Location: The beautiful Garden State
2,683 posts, read 3,405,369 times
Reputation: 3536
I think some are being a little hard on the OP. It's a very stressful time in his life.

After all, his mother was apparently a very difficult person, and not everyone is cut out to be a caregiver, especially to someone with dementia. I sure wasn't, not physically or emotionally.

The OP lives thousands of miles away and is still trying to get care for his mother. He seems to have made arrangements for her care as best as he knows how, including POA. Remember, she seems to have made no plans and saved any money, which is why she is already on Medicaid.

That being said, Raubre, I think your mother needs to be in a nursing home with an Alzheimer's unit. It would be much better for everyone involved if that happened. She eventually won't even know where she is. Dementia is truly a distressing and horrifying thing to witness. And it only gets worse.

Medicaid will pay for practically all of it. Of course, they try to be reimbursed later after the patient's death, but if the patient left no money behind, there is not much they can do.

Last edited by NewJerseyMemories; 09-20-2015 at 01:28 AM..
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Old 09-20-2015, 06:53 AM
 
Location: Wonderland
44,452 posts, read 35,922,975 times
Reputation: 62843
Quote:
Originally Posted by NewJerseyMemories View Post
I think some are being a little hard on the OP. It's a very stressful time in his life.

After all, his mother was apparently a very difficult person, and not everyone is cut out to be a caregiver, especially to someone with dementia. I sure wasn't, not physically or emotionally.

The OP lives thousands of miles away and is still trying to get care for his mother. He seems to have made arrangements for her care as best as he knows how, including POA. Remember, she seems to have made no plans and saved any money, which is why she is already on Medicaid.

That being said, Raubre, I think your mother needs to be in a nursing home with an Alzheimer's unit. It would be much better for everyone involved if that happened. She eventually won't even know where she is. Dementia is truly a distressing and horrifying thing to witness. And it only gets worse.

Medicaid will pay for practically all of it. Of course, they try to be reimbursed later after the patient's death, but if the patient left no money behind, there is not much they can do.
I agree with a lot of this post but I want to make a few observations, especially regarding the part I bolded:

1. "He seems to have made arrangements for her care as best he knows how" - you're right, and what he's been receiving here for the most part, is additional information - because he doesn't seem to grasp the magnitude of the situation with his mom, which is common because until this maelstrom hits one's life, one doesn't really understand the effects. Most people come to this section of the forum to give and receive advice from others who are going through similar situations, and sometimes that advice isn't what they expect, but the majority of people who are regulars to this section have lived through some pretty excruciating situations with their family members and have a wide range of suggestions, information, etc. that is often very useful.

I haven't seen as much "hardness" to the OP as I have seen people who are a bit alarmed by the whole scenario he's outlined, and who are genuinely trying to help him understand the magnitude of the problem - as well as give concrete, informed, and pertinent advice.

The OP has responded defensively. I understand that he's got a difficult relationship with his mother, which is why I specifically said to him that he doesn't owe anyone an explanation and that he may legitimately choose to remain at a distance. But to me anyway, it's clear that he has NO IDEA of the magnitude of the freight train that is about to hit his mother's life - and the lives of his aunt and cousin who are stepping in to take care of her. So as soon as I realized that his apparently elderly aunt and his cousin with the full time teaching job are going to be her main care providers, my concern extended to them as well. My advice, and the advice of others, shifted to encompass them as well, since the OP himself has stated that he intends to be somewhat involved in his mom's care but they are going to be the main caregivers.

2. "including POA" - Not to put too fine a point on it, but he didn't arrange the POA - the cousin did. It seems clear to me that the OP believes that his cousin can and should shoulder the brunt of the responsibility for the care of his mother - and maybe he's right in a sense, because not all mothers automatically earn the right to be cared for by their children. Some mothers are difficult, irresponsible, even abusive, which is why I haven't personally told the OP I think he's being too lackadaisical or shirking his responsibilities.

But the OP has made it clear that he does intend to be somewhat involved - and that's why I offered the advice I gave about the POA and him being a "backup" for his cousin.

Yes, I'm concerned about the cousin - frankly more than I am about the OP, because he's going to leave in a few days or weeks, and go back to the west coast, and CLEARLY he has no idea just how much of a toll this whole experience is going to take on the people he's leaving behind to take care of his mother. For his mother's sake, and their sake, AND HIS SAKE, I've made recommendations.

I wish the OP would drop his defensiveness and listen to people who have experienced this, or who ARE experiencing this. My MIL has Alzheimer's and Parkinson's as we speak, just as his mother does. Two years ago she was able to get up, dress herself, cook small meals, go to the grocery store, the beauty shop, etc. Now she is wheelchair confined, her muscles have atrophied, she is incontinent, she needs help to even eat or drink a glass of water, she can do absolutely NOTHING for herself and has to be lifted in and out of the bed and wheelchair, and has completely lost her mind. She was 100 percent incapacitated by this time last year in fact.

My efforts have been for the OP to realize how quickly and thoroughly the effects of these diseases can ravage a person - and their family. Our family was not prepared, due to my FIL's psychological denial of the seriousness of the problem. To be honest, my FIL's refusal to discuss or even think about the reality of the situation did much more harm than good. When he finally couldn't take care of my MIL any more, the rest of us were left to pick up the pieces and try to make a plan - in the middle of a crisis. IT HAS BEEN HORRIBLE and THAT is the scenario I've been trying to HELP the OP avoid.

Last edited by KathrynAragon; 09-20-2015 at 07:07 AM..
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Old 09-20-2015, 07:03 AM
 
Location: Wisconsin
16,932 posts, read 17,228,282 times
Reputation: 40920
Quote:
Originally Posted by NewJerseyMemories View Post
I think some are being a little hard on the OP. It's a very stressful time in his life.

After all, his mother was apparently a very difficult person, and not everyone is cut out to be a caregiver, especially to someone with dementia. I sure wasn't, not physically or emotionally.

The OP lives thousands of miles away and is still trying to get care for his mother. He seems to have made arrangements for her care as best as he knows how, including POA. Remember, she seems to have made no plans and saved any money, which is why she is already on Medicaid.

That being said, Raubre, I think your mother needs to be in a nursing home with an Alzheimer's unit. It would be much better for everyone involved if that happened. She eventually won't even know where she is. Dementia is truly a distressing and horrifying thing to witness. And it only gets worse.

Medicaid will pay for practically all of it. Of course, they try to be reimbursed later after the patient's death, but if the patient left no money behind, there is not much they can do.
Excellent points.

OP, none of us know the full story behind a situation and inside a family, all we can do is post advice and suggestions that we feel may work well for a person making a post & asking questions.

There are many, many compassionate and experienced caregivers on this site (of course, sometimes one or two jerks, but like on any forum just ignore them) with decades of knowledge and practical advice. Please just reread the answers and try to use what will be useful in your case.

Good luck to you and your family.
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Old 09-20-2015, 07:35 AM
 
Location: Wonderland
44,452 posts, read 35,922,975 times
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Let's go back to the original post:

Quote:
I guess my main concerns are how do I keep my sanity level up in the meantime? I get the guilt trips from my mother (I'm honestly not sure if it's the dementia or the fact that she always laid guilt trips on me for being independent.) How do I help out cross country when things are at a plateau and not life threatening.

I have been pretty much a bundle of nerves the past few weeks. I am pretty much just looking for insight and advice on how to handle the situation until I go back home. I feel like I'm walking on eggshells more than ever than I did with her before.
Quote:
I guess my main concerns are how do I keep my sanity level up in the meantime?
Personally, my recommendations were made with the idea that knowledge is power, and that there is great peace of mind in knowing you've done all you can in a situation and covered the bases as much as possible. Everyone handles stress differently but when I'm faced with a particularly difficult situation, I can't really rest mentally or emotionally until I know I've done all I can from my end to make matters as streamlined and efficient and practical as possible.

Quote:
I get the guilt trips from my mother (I'm honestly not sure if it's the dementia or the fact that she always laid guilt trips on me for being independent.)
OK, she's always laid guilt trips on the OP apparently. Like I and others have said, maybe the OP's angst regarding his mom is legit - not all moms are great moms, not all sons are great sons, and not all relationships are sweet and precious just because two people are related. We have no way of knowing the ins and outs of the OP's relationship with his mom so I'm personally just taking his word for it when it comes to their situation. BUT STILL - regardless of his mom's faults, he is choosing to step in as some sort of support, though the daily burden of her support is going to be relegated to a cousin and aunt - and the OP is going to continue his involvement with these two people, who are about to experience the wrath of Kahn enveloping their lives whether they or the OP realize it or not.

But back to the OP's angst - There aren't many moms who would be too happy about an only child moving completely across the country, so the fact that she's laying guilt trips on the OP doesn't surprise me. But now - with a devastating diagnosis of both dementia AND Parkinson's, his mother must be reeling with shock and grief and panic. She's not likely to be thinking clearly - and it's going to get worse. The OP is going to have to wrap his head around the entire situation - not just his anxiety, but everyone's anxiety. That is, if he wants to help - which apparently he does (to his credit).

Quote:
How do I help out cross country when things are at a plateau and not life threatening.
Here's where people have offered all sorts of advice - the OP needs to let it sink in. He needs to carefully consider each point.

Most of all, he needs to realize, and own, and plan for, the fact that things will not remain at a plateau for long. What he thinks is a plateau is really just the calm before the storm. Sad but true. So he needs to plan for the storm - not the plateau. The plateau is short lived and it's the easy part.

Quote:
I have been pretty much a bundle of nerves the past few weeks.
OP, we can relate. What you and your family are facing is daunting and very sad and very distressing. If YOU are a bundle of nerves right now, think of what your mother is feeling? You are about to head back home, thousands of miles away. Your mother and your aunt and your cousin can't do this. While I feel for you - and I honestly do - my advice has been given from the perspective of it feeling better emotionally to be PROACTIVE rather than REACTIVE. Like it or not, you are the oldest and only son and you HAVE chosen to be involved with your mom's care. Pain and frustration and stress are inevitable. This is where the rubber meets the road.

This too shall pass, and I would hope that when it does, you have no regrets, no unaddressed emotional issues, no feelings of guilt or failure that will make matters worse in the long run.

Quote:
I am pretty much just looking for insight and advice on how to handle the situation until I go back home.
People have been giving the OP all sorts of practical advice.

Quote:
I feel like I'm walking on eggshells more than ever than I did with her before.
OP. Your mother just received a devastating diagnosis. This is HER LIFE that is about to take a terrible downward turn, and there's absolutely nothing she can do to stop it from happening. Cut her some slack.
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