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Old 06-27-2019, 10:21 PM
 
Location: Central IL
15,201 posts, read 8,504,300 times
Reputation: 35562

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I swear I don't understand why it's fine for young guys to spend 10 hours a day playing video games or young women spending 6 hours on social media but you get over the age of 55 and it's somehow viewed completely differently.

Face it, your parents aren't the "go outside and exercise vigorously or do wood chopping chores" kind of people - they NEVER were. It is unrealistic to expect anything like that now. You find their lifestyle completely unacceptable...they won't change - what are your options then? Make peace with your differences - maybe you have to view them benevolently as if they were children and pat them on the head without helping them....or distance yourself either emotionally/physically...or continue to beat your head against a wall.

I've seen nothing where you've acknowledged people's comments as being helpful. You add more detail but nothing has made any impression on you. You aren't in enough pain yet, so carry on until you are.
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Old 06-27-2019, 10:41 PM
 
8,115 posts, read 8,616,186 times
Reputation: 9075
Quote:
Originally Posted by Serious Conversation View Post
Girlfriend has lupus and RA.

Yes, she has lots of flare up days where she can't do much. She might not be able to load a Le Creuset some days. She could take a tumbler from the sink to the top shelf of the dishwasher and place it in there. Girlfriend's health issues are probably more serious than mom's.

Girlfriend was admitted to hospitals roughly twenty times in a year and a half. I don't ever remember mom being admitted.
I'm happy for you that Mom has been able to remain functional. The medications must be helpful and she is responding well to them. However, as you know, those medications have numerous side effects.

I am sorry for your girlfriend. These diseases have nothing to do with age in terms of hindering your quality of life. Post-menopausal women, however, do have a harder time, not only with the disease itself, but with the medications. Chronic Fatigue is another tough one. With these autoimmune diseases, you have good days and bad days. When people see you being active on your good day, they just assume that you can keep up that level the following day and also, they don't understand that you can be taking pain killers to enable you to function. One day you can do household chores and the next day, you can't even dress yourself. These are "invisible" disabilities. As for whoever said that having an autoimmune disease qualifies you for SSDI, some of them are not on the eligible list. Fibromyalgia has just recently been approved, but CFS still is not. As others on these boards have posted, it can take years to be approved for SSDI and when you are close to getting social security anyway, you might as well not bother.

I don't think they can do much for your mom in a hospital with Pem, unless it effects a secondary area or it targets internally. It's primary target is the skin. All you can do is take the medications and wait to see if they help. Sometimes, the medications that work for a while lose their effectiveness. No one really knows why. There are alternatives to the steroids, but generally they are not as effective. There is no corrective surgery.

There have been a few studies about whether diet or specific food ingredients can increase the symptoms for Pemphigoid. So far, there has been no correlation. Of course, doctors always advise patients to eat a healthy diet anyway to prevent secondary problems, but so far there does't seem to be any sort of correlation between high fat, or high sugar or any of that bad stuff having an averse reaction to patients with Pemphigus. It's still such a relatively rare disease, there isn't a lot of money being targeted for research.

FWIW, Dr. Jo-David Fine at Vanderbilt is probably the only one at Vanderbilt with any pemphigus experience. Vandy is really not a good place to go to for this disease, if for some reason, your parents change their mind and wish to pursue treatment outside of their immediate local area.
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Old 06-27-2019, 11:02 PM
 
1,198 posts, read 1,067,962 times
Reputation: 2500
Quote:
Originally Posted by Coney View Post
The OP's mom has a very serious health problem. Let's not minimize that. Most of the respondents here don't seem to recognize that.

Does she have blisters on her feet or arms that make it difficult for her to move around? Of course she's depressed. Those blisters are painful and ugly. And worst of all, few people seem to understand it or know about it. It's not just the weight or the diet or the lack of exercise. If she doesn't take the meds, that disease will eat her alive. But the medications have all kinds of side effects. You raise the dosage to decrease the condition and when the flare up is under control, you gradually decrease the medication. And the blisters look ugly. Most people don't know what they are and if they see them, they will avoid you or avoid touching you. It's a horrible, horrible disease. It's much worse for post-menopausal women AND it's not so easy to move around when there is a flare up, whether you are thin or fat. Does she take any NSAIDs for the pain?

Being sedentary is the least of her problems.

You can contact the International Pemphigus and Pemphigoid Foundation for more support, information about trial studies, and other information. There are local support chapters, but doubt that there are any in her area. My friend started the national organization in San Francisco, but she got tired of running it. It was a lot of work and she established chapters all over the US. She's retired. This isn't like diabetes where your average local doctor can treat it. It doesn't matter if your mother is 40 or 80. She's sick. Stress makes it worse, literally. I know everyone says that, but in this particular disease, it literally will make the lesions pop out. Looks like her boss has some compassion and gave some time off to a long-time employee. What is wrong with that?

Sounds like the OP has a lot of his own issues and possibly is on the spectrum. But one thing for sure, he needs to grow the hell up.
Thank you for emphasizing the health issues. I won't dabble in the family dynamics here but the health issues are another matter.

I suspect that the average person doesn't know what pemphigus and pemphigoid are. I do know and I wouldn't wish either of those on my worst enemy.

Here's a link to the Mayo Clinic's pages about bullous pemphigoid if anyone wants to get a better idea of what the OP's mom is dealing with.

https://www.mayoclinic.org/diseases-...s/syc-20350414

I have taken some of the same medications that are used to treat this disorder, although I was taking them only intermittently and for an entirely different problem. The side effects knocked me out and created health issues, both mental and physical, which I've never experienced except when taking those meds. For me it requires taking additional meds to counteract the worst side effects of the initial meds. An endless loop.

OP, if nothing else, your dad or you or preferably both of you should speak with your mom's doctor about her medical issues, medications, etc. Perhaps a change in meds could greatly improve your mom's quality of life.

Just my two cents . . .
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Old 06-27-2019, 11:17 PM
 
5,406 posts, read 2,330,862 times
Reputation: 14968
Quote:
Originally Posted by ansible90 View Post
he tried that. He keeps moving back "home" and continues to get caught up in his parents', grandmother's or girlfriend's problems.
+1- although I thought recently there was a whole thread on how he dumped her???

Yep.

I was cheating. She reset my Facebook and checking account password to find out.
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Old Yesterday, 11:15 AM
 
Location: Wisconsin
17,004 posts, read 17,320,800 times
Reputation: 41259
OP, it has been a couple of weeks since you started this thread. How about an update?

Did you set a few boundaries? How are they working out?

Or are you still driving over to your parents house at lunch time and loading the washing machine, rolling the garbage carts in and out, etc. etc. ?
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Old Yesterday, 11:45 AM
 
58 posts, read 9,431 times
Reputation: 127
Ensure your mother understands Medicare and doesn't wait to sign up for all parts.

Waiting means there would be underwriting, meaning her premium will depend upon her health.

She is going downhill. It's mean to assist her with chores, she needs to move even if it takes hours.

So sorry you are in this predicament. But you need to explain to them you care about them, her especially as your dad gets enough physical exercise.

She can do it. And if she cannot, it's motivation to loose weight
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Old Yesterday, 06:47 PM
 
Location: Tennessee
23,541 posts, read 17,525,434 times
Reputation: 27573
Quote:
Originally Posted by Coney View Post
I'm happy for you that Mom has been able to remain functional. The medications must be helpful and she is responding well to them. However, as you know, those medications have numerous side effects.

I am sorry for your girlfriend. These diseases have nothing to do with age in terms of hindering your quality of life. Post-menopausal women, however, do have a harder time, not only with the disease itself, but with the medications. Chronic Fatigue is another tough one. With these autoimmune diseases, you have good days and bad days. When people see you being active on your good day, they just assume that you can keep up that level the following day and also, they don't understand that you can be taking pain killers to enable you to function. One day you can do household chores and the next day, you can't even dress yourself. These are "invisible" disabilities. As for whoever said that having an autoimmune disease qualifies you for SSDI, some of them are not on the eligible list. Fibromyalgia has just recently been approved, but CFS still is not. As others on these boards have posted, it can take years to be approved for SSDI and when you are close to getting social security anyway, you might as well not bother.

I don't think they can do much for your mom in a hospital with Pem, unless it effects a secondary area or it targets internally. It's primary target is the skin. All you can do is take the medications and wait to see if they help. Sometimes, the medications that work for a while lose their effectiveness. No one really knows why. There are alternatives to the steroids, but generally they are not as effective. There is no corrective surgery.

There have been a few studies about whether diet or specific food ingredients can increase the symptoms for Pemphigoid. So far, there has been no correlation. Of course, doctors always advise patients to eat a healthy diet anyway to prevent secondary problems, but so far there does't seem to be any sort of correlation between high fat, or high sugar or any of that bad stuff having an averse reaction to patients with Pemphigus. It's still such a relatively rare disease, there isn't a lot of money being targeted for research.

FWIW, Dr. Jo-David Fine at Vanderbilt is probably the only one at Vanderbilt with any pemphigus experience. Vandy is really not a good place to go to for this disease, if for some reason, your parents change their mind and wish to pursue treatment outside of their immediate local area.
You seem to be looking at various pemphigus issues, largely impacting the mouth. If you Google "bullous pemphigoid," she is nowhere nearly as severe. She has none of those mouth blisters at all.

I'm not trying to say she isn't sick, but she's not as bad off as the cases you find Googling.
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Old Yesterday, 07:07 PM
 
Location: Tennessee
23,541 posts, read 17,525,434 times
Reputation: 27573
Quote:
Originally Posted by reneeh63 View Post
I swear I don't understand why it's fine for young guys to spend 10 hours a day playing video games or young women spending 6 hours on social media but you get over the age of 55 and it's somehow viewed completely differently.

Face it, your parents aren't the "go outside and exercise vigorously or do wood chopping chores" kind of people - they NEVER were. It is unrealistic to expect anything like that now. You find their lifestyle completely unacceptable...they won't change - what are your options then? Make peace with your differences - maybe you have to view them benevolently as if they were children and pat them on the head without helping them....or distance yourself either emotionally/physically...or continue to beat your head against a wall.

I've seen nothing where you've acknowledged people's comments as being helpful. You add more detail but nothing has made any impression on you. You aren't in enough pain yet, so carry on until you are.
No one is expecting them to go out and run marathons. I fully acknowledge mom has a lot of issues.

Still, they're locked into a rut. Friday is his mowing/yard/gym day. Saturday is the Target/Sam's/Walmart day. Sunday it's sit in the house and watch TV, and maybe venture as far as the mailbox. It is very, very rare that they're out past 1 PM on a Sunday. There are very rarely any breaks in this routine. She never gets dressed beyond her robe/gown on most Sundays.

At 61, they are who they are. They're not going to change. She's had a lot of health issues, most of which are least aggravated by lifestyle problems. If this won't motivate her to change, I don't know what will. The best you can is to meet them where they are and accept the issues.

Quote:
Originally Posted by germaine2626 View Post
OP, it has been a couple of weeks since you started this thread. How about an update?

Did you set a few boundaries? How are they working out?

Or are you still driving over to your parents house at lunch time and loading the washing machine, rolling the garbage carts in and out, etc. etc. ?
They were from a week ago this past Saturday to this past Thursday. I checked on the cats every other day and cleaned/organized the hoarded bedroom one day after work. I talked to dad about it and he said go ahead - mom would never agree to it, but left to herself, she'd never do anything. He won't upset the apple cart with her.

I hauled off 22 empty shoe boxes with no shoes in them. Dad had hung a shoe rack on the door, but shoes were spilled all over the floor with no shoes on the rack. I racked as many as I could. Tons of empty packaging from things she had bought and hadn't even taken the packaging away. 16 Michael Kors purses, many laying in the floor under other debris, and many with the original MSRP tags on them. There were 54 total purses, and I organized them in totes with lids off alphabetically by maker. Many of the purses had old gum, crackers, breakfast bars from <2017. There were multiple comforters and sheets - one of which the cats had defecated on. Any old food or anything that was pooped on was discarded.

The window, ceiling fan, and closet in that bedroom were all inaccessible. I had to basically go item by item, stuffing things into bins, and cut a way in. What was hilarious was that once I did, the actual closet itself was maybe half full of clothes. There were clothes on hangars in the floor buried under other random crap. The floor was basically a debris field. I got the caked dust off the fan (only the bottoms of the blades were not caked), changed those bulbs, and got the fan operable again. The window can be accessed. The closet can be used properly.

I ran the vacuum over all the corners and places on the walls where I saw cobwebs, organized things into bins by type/alphabetically, hauled off the trash, etc. It's not perfect, but that still took me four to five hours, and was two back ends of the Jeep of recyclables.

Last edited by Serious Conversation; Yesterday at 07:19 PM..
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Old Yesterday, 07:18 PM
 
Location: Central IL
15,201 posts, read 8,504,300 times
Reputation: 35562
Quote:
Originally Posted by Serious Conversation View Post
No one is expecting them to go out and run marathons. I fully acknowledge mom has a lot of issues.

Still, they're locked into a rut. Friday is his mowing/yard/gym day. Saturday is the Target/Sam's/Walmart day. Sunday it's sit in the house and watch TV, and maybe venture as far as the mailbox. It is very, very rare that they're out past 1 PM on a Sunday. There are very rarely any breaks in this routine. She never gets dressed beyond her robe/gown on most Sundays.

At 61, they are who they are. They're not going to change. She's had a lot of health issues, most of which are least aggravated by lifestyle problems. If this won't motivate her to change, I don't know what will.
You are a naive young man. When most people, especially older people, get "health problems" the first reaction is to "take it easy" until they feel better - not to begin a vigorous exercise program when they are tired and in pain. I'm not saying that isn't what they need to to, but it's not human nature to do things that are aversive and activity most definitely is when you're getting older and already don't feel good.

And there are far worse things in life than a routine - I'm sure you'd approve of a routine if it included more activity.

I'm sorry you don't understand this - you've no doubt made your opinions clear to them and other than not doing things you don't agree with (helping them) then that's all you can do. I'd recommend detaching, but not abandoning them. They may do better than you think.
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Old Yesterday, 07:35 PM
 
Location: Tennessee
23,541 posts, read 17,525,434 times
Reputation: 27573
Quote:
Originally Posted by reneeh63 View Post
You are a naive young man. When most people, especially older people, get "health problems" the first reaction is to "take it easy" until they feel better - not to begin a vigorous exercise program when they are tired and in pain. I'm not saying that isn't what they need to to, but it's not human nature to do things that are aversive and activity most definitely is when you're getting older and already don't feel good.

And there are far worse things in life than a routine - I'm sure you'd approve of a routine if it included more activity.

I'm sorry you don't understand this - you've no doubt made your opinions clear to them and other than not doing things you don't agree with (helping them) then that's all you can do. I'd recommend detaching, but not abandoning them. They may do better than you think.
This isn't being naive. I'm fully aware of the situation. It's the way she's always been.

She was only nominally more active two decades ago with no health problems at all, but when you're younger, you can kind of skate by with the bad habits due to youthful health. At 61, bad luck and the lifestyle decisions are all piling up.

It's hard to tell to what extent the health problems, diet, etc., are limiting her, because that's the way she's always lived. She's slowed down, some, but it was a "start slow then taper off" deal. She was never active. Regardless, she's gone from decent health and sedentary to bad shape.

What kills me is how he's completely surrendered his hobbies like chess and fishing, trying to keep up a huge yard when he hates yard work. It feels like a lot of trying to save face.
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