On the Roads Again
So we're heading off this morning, back to St. Paul. We stayed here in Marietta an extra day because I just wanted to be with Jan.
It's been frustrating in that I haven't been able to speak with any of her doctors, Gerry and I were discussing what a different atmosphere this medical center is compared to the ones we've been dealing with in MN and NJ. It's almost as if the families here are so USED to deferring to the doctors that the doctors have been able to ignore the memo that they're not gods.
And, as any fan of Greek Mythology knows, when you get more than one god together, they tend to get into spats and disagreements. So Jan gets one comment from one doc, a different from another, and - as she is one of the smartest, most medically educated folks I know - even she is left dazed and confused.
And I hate to leave her. And the small extended family that is here hates for me to leave her, and that makes me feel more guilty than I've felt in a long time.
But there's nothing for it but to do what has to be done, and in this case - because we stayed an extra day - it means tag-team driving for 14 hours back to St. Paul.
I've left the actual packing of the car - the few things we brought into the hotel - to Han, Max and Gerry. Bless them. Traveling with a family is a LOT different than alone. More fun, definitely, but more work. It will be good to be home, I have buttloads of work I need to get done.
Yesterday I felt so tired - heaven knows why because I was sitting almost the whole day! - but I'm sure it was stress. Jan was transported to the hospital for her chemo, which took many hours more than it was supposed to (dang!) and then back to the nursing home where the strong emotions got the best of a close family friend and my only recourse was to just walk away. Maybe being overextended, exhausted and my mind being a bit of a blank makes me behave as an adult?
At any rate, a walk, a cool-down, and then a very nice dinner at the River City cafe right on the Ohio (and two Blue Moons) made life much more faceable. And as tired as I was, it was NOTHING compared to Jan's continued nausea, pain and exhaustion. This sucks.
The nursing home is quite lovely, though. Getting the social worker to fight for Jan to have internet access is a losing battle ("We don't allow the patients to use the internet. Period." said one nurse who overheard my conversation with the social worker)
Jan is too tired to care much about it, but I'm of the belief that if she HAD the internet, she could write to her friends around the world, look for stuff online, and feel more - connected - than she currently does. But I could be nuts
'll keep on fighting for it while I'm in St. Paul, though...
It's been frustrating in that I haven't been able to speak with any of her doctors, Gerry and I were discussing what a different atmosphere this medical center is compared to the ones we've been dealing with in MN and NJ. It's almost as if the families here are so USED to deferring to the doctors that the doctors have been able to ignore the memo that they're not gods.
And, as any fan of Greek Mythology knows, when you get more than one god together, they tend to get into spats and disagreements. So Jan gets one comment from one doc, a different from another, and - as she is one of the smartest, most medically educated folks I know - even she is left dazed and confused.
And I hate to leave her. And the small extended family that is here hates for me to leave her, and that makes me feel more guilty than I've felt in a long time.
But there's nothing for it but to do what has to be done, and in this case - because we stayed an extra day - it means tag-team driving for 14 hours back to St. Paul.
I've left the actual packing of the car - the few things we brought into the hotel - to Han, Max and Gerry. Bless them. Traveling with a family is a LOT different than alone. More fun, definitely, but more work. It will be good to be home, I have buttloads of work I need to get done.
Yesterday I felt so tired - heaven knows why because I was sitting almost the whole day! - but I'm sure it was stress. Jan was transported to the hospital for her chemo, which took many hours more than it was supposed to (dang!) and then back to the nursing home where the strong emotions got the best of a close family friend and my only recourse was to just walk away. Maybe being overextended, exhausted and my mind being a bit of a blank makes me behave as an adult?
At any rate, a walk, a cool-down, and then a very nice dinner at the River City cafe right on the Ohio (and two Blue Moons) made life much more faceable. And as tired as I was, it was NOTHING compared to Jan's continued nausea, pain and exhaustion. This sucks.
The nursing home is quite lovely, though. Getting the social worker to fight for Jan to have internet access is a losing battle ("We don't allow the patients to use the internet. Period." said one nurse who overheard my conversation with the social worker)
Jan is too tired to care much about it, but I'm of the belief that if she HAD the internet, she could write to her friends around the world, look for stuff online, and feel more - connected - than she currently does. But I could be nuts
'll keep on fighting for it while I'm in St. Paul, though...
Feed me, baby!
20 Comments:
"We don't allow the patients to use the internet. Period." Ignorant at best. Callous at worst.
I am a caregiver, too. You are wise to go for a walk, have a couple of beers, and not lose yourself in her pain.
I am wondering if Jan could text in place of email, just to maintain contact with her friends.
Take care--and do it one day at a time.
My heart aches for you for wanting to be in two places at once. You have had so much to deal with over the past year and a half/two years and you do it with such grace. I'm glad you are able to write and share it all with us and I think that helps in the long run.
I hope you all have a safe ride back home.
Why on earth would they forbid internet access? That's how people stay connected, and one needs it more than ever when ill. Are they afraid someone will complain about the facility? I hope this is not a widespread practice. Maybe the ACLU could weigh in!
Get some rest.
You probably already know that the wireless phone companies are offering a gadget you plug into a USB port and like magic you are on line ... it is a little costly but perfect for someone in a nursing home. Call me rebellious but she could be all fixed up with laptop and gadget and no one would ever know !
Bless you. Keep strong. Your focus is pure!
not being able to use the internet? That's nuts! That's like saying they can't use a phone or read a newspaper. I'm sending lots of healing thoughts her way!
maybe someone could get your cousin one of the laptop connect things that work through the cell phone companies? that way she is connected independently of the nursing home.
I can' believe they won't let her have internet - what kinda crap is that. people in that kind of care are already feeling so isolated and alone - yeah, just cut em of completely, that's the way to help them cope - unbelievable.
what, are they afraid someone is going to download porn? who cares.
Do they have wifi? You could get her an ipod touch if you think they wouldn't confiscate it. It works, in a lot of ways like an iphone, except for the calling bit. It's supposed to be a lot more intuitive than most other PDA sort of devices and she could easily use it in bed.
And yeah, the medical care in Minnesota is far superior to any I've encountered elsewhere and I've lived almost everywhere due to my parents being in the Army.
I'm utterly flummoxed about why she should be use the internet.
Could she do so from a mobile phone?
nursing home residents are guarranteed by LAW to have access to the 'outside' inlcuding internet. contact the local ombudsman for support in this matter.
the law requires a nursing home to provide access to the 'outside' to residents. contact the ombudsman for help with this.
The Internet can be such a salvation for invalids. Why do I think that the nursing home bans it for the sake of its staff, not considering the pleasure or entertainment of the patients. Maybe there's a "good" reason. But I suspect that if someone (in a position of power) really wanted it, the Internet could be made available in some fashion. Often, it's getting the "right" person to agree with you. I hope you're successful, Annie.
Gah! I don't understand why the nursing home won't allow patients to use the internet. Because they might learn too much and ask too many questions? I'm sure this will change, someday, as the tech savvy population gets older, but I can't believe they said that.
You are a trouper. God bless you.
What do you mean they "don't allow the patients to use the internet. period."? Is this a nursing facility or a prison? What is next? They don't allow patients to use the mail or the phone? Maybe they won't allow visitors either. Your cousin Jan can always use a laptop that is hooked up on one of those cell phone plans. If the facility has a problem with that, change facilities. P.S. I work in healthcare and I am an attorney. This sounds really fishy to me.
("We don't allow the patients to use the internet. Period." said one nurse who overheard my conversation with the social worker)
****that just frosts my butt! I have been a nurse as long as Jan (and probably longer than that nurse)and I have never heard such arrogance. "ALLOW"? Are they the parents and the residents the children? The residents are PAYING for their care and therefore BUYING the services of the nurse and everyone else who works there. That is just stupid to not "allow" folks something that is as basic as a telephone for many of us. Jan should call her congressman.
Sorry for the rant, but nothing steams me quite as much as people who have a little authority and use it to bully others.
That's just awful about Jan's lack of internet access. Someday, they'll need to enter the late-20th century!
While I agree that it's wrong to prevent patients from using the Internet - especially blocking them from e-mail access seems heartless, I wonder if it was a misguided "for their own good" measure?
I know when my dad was going through some health stuff, he wouldn't give me a lot of detail, because he knew I'd Google it, assume it was the worst possible thing of the things it could be, and spend a lot of time worrying. (Thank goodness it turned out to be something cureable).
I also wonder if there isn't some "history" behind that decision we don't know...like some of the staff got in trouble doing something, or a patient surfed sites that were troubling to others (I suppose some people, even when very ill, would go for p0rn), or something.
But yeah, it sounds kind of like a "let's keep 'em in the dark so they stay docile" situation.
You are so right to fight for Internet access for your cousin. A few years ago, I was very ill for a long time. After spending 6 months alternating between the hospital and bed rest, my hubby offered to buy me a laptop for our anniversary. I did not want it. I had a perfectly nifty desk top that I would use again when I was back on my feet. He, wisely, bought it for me anyway. I can not tell you what a difference it made to my state of mind and my recovery. You know this already, but people forget you exist when you are sick for a long time. Laptop access to the internet let me feel more involved in the choices that led to my recovery and gave me a social life which helped a lot with the inevitable depression. Your family is very lucky to have you.
((HUGS))
Lisa C.
My mom was in a rehab facility for 7 weeks following a stroke this spring. My husband was persistent until we were "allowed" to get her internet access in her room. We took in a laptop and I think he set up a router. For my mom, she couldn't have physically handled a cell phone but that might well work for your cousin. I know my son does everything except write papers on his i-phone.
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