Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
September 22, 2014, 01:19:26 PM

Login with username, password and session length


Members
  • Total Members: 23519
  • Latest: Krn1234
Stats
  • Total Posts: 639739
  • Total Topics: 48563
  • Online Today: 221
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: When HIV moves into nursing homes  (Read 4898 times)

0 Members and 1 Guest are viewing this topic.

Offline SteveInToronto

  • Member
  • Posts: 55
When HIV moves into nursing homes
« on: February 27, 2011, 11:06:30 AM »
This is not an uplifting story, but it is nice to see these issues being discussed in our local mainstream media.

http://www.healthzone.ca/health/newsfeatures/article/945588--when-hiv-moves-into-nursing-homes?bn=1



When HIV moves into nursing homes
February 27, 2011

Susan Pigg
LIVING REPORTER

It was as he writhed in pain on the bathroom floor, his anxious dog curled up in a ball against his back, that the grim reality of growing old with HIV hit Jim Ayerst.

“I’ve never been suicidal, but that’s the first time I thought, it’s not worth it. I just want this over.

“I considered jumping off my balcony — but I only live on the second floor.”

A wry smile creeps across Ayerst’s weary face. He’s just 64 but feels 80.

These days he’s as terrified as when he walked out of a doctor’s office with a diagnosis and an apparent death sentence 20 years ago.

“There are days now I wonder, what am I still doing here?”

More than two decades after modern medicine and toxic antiretroviral drugs seemed to stop HIV/AIDS in its tracks, Ayerst is the new face of a disease that almost wiped out a generation of young gay men.

He is grey-haired and growing old at a rate 15 to 20 years faster than those without the virus. His body is wracked by a host of chronic conditions more often seen in the elderly. In the last four years, Ayerst has been hit with diabetes, asthma, an aneurysm, memory problems and a nerve condition that sends pain shooting up his left leg like an electric shock.

He lives in a Charles St. co-op apartment with help from “a team of angels” — fellow longtime survivors, personal support workers, a nurse and social worker.

But there’s one thing he fears more than death: being forced into a long-term-care facility where he might have to return to the closet in order to fit in.

“If I get any sicker I won’t have a choice but to go to a nursing home and that scares the bejesus out of me,” says Ayerst.

Toronto’s HIV/AIDS experts and activists are growing increasingly alarmed by “a hidden epidemic” — infected people who have lived decades longer than anyone imagined and are being hit with a host of aging illnesses in their 30s, 40s and 50s. They include dementia, cardiovascular and liver disease, cancers, diabetes, osteoporosis, emphysema and kidney problems.

Researchers are still puzzling over the reasons — whether it’s the disease itself, the long-term effects of the medications, or it’s that compromised immune systems are simply breaking down.

“HIV is no longer a death sentence, it’s a chronic disease,” says Dr. Ann Stewart, medical director at Canada’s first free-standing HIV/AIDS hospice, Casey House. Doctors used to urge patients to get their affairs in order. Now they talk about the likelihood of living to retirement.

“That’s a message of hope,” says Stewart. “But what exactly that means is also a big experiment.”

So far, it’s meant a lot of silent suffering, says Sean Rourke, an HIV/AIDS researcher and executive director of the Ontario HIV Treatment Network. He’s in the midst of researching the scope of the problem — longtime survivors with few supports and even fewer places to live as they endure what’s being termed “accelerated aging.”

“It’s not going to be a pretty picture. Most people are alone and suffering with these complications,” says Rourke.

There are more than 20,000 people in Ontario living with HIV/AIDS, many of them in Toronto. Casey House has seen a dramatic change in who they are: More than half its clients are over 50. Thirty per cent have HIV-related dementia.

Mainstream long-term-care facilities find themselves facing a delicate balancing act — how to care for frail elderly residents, most of them women with dementia, and make room for much younger men with multiple chronic diseases often compounded by mental health issues.

Some Ontario long-term care facilities have balked at taking those with HIV, saying “your needs are too complex to be met in this facility.” Others have practised a kind of reverse age discrimination, declining those with HIV/AIDS who are under 60.

“The health-care system and the long-term-care system just aren’t designed to handle this,” says Rourke, “not to mention the stigma and other issues that come into play from being gay.”

Kenneth Poon was just 45 and had had HIV for 20 years when shingles left him blind and so sick he had to quit his job in the fashion industry, sell his home and move into Casey House.

It used to be that the young men who came to the hospice died two weeks later. But Poon holds the record for the longest stay — two years and one month. That’s partly because he had no place to go once he recovered.

He ended up in a four-bed ward in a mid-Toronto nursing home where he was the only openly gay resident.

“Staff at the home warned me that the average age of the other residents was 83. I was 47. I thought, ‘I’ll be fine. I’m a very social guy.’ But most of them had dementia and Alzheimer’s.”

Poon tried to make the best of things, until one night he lined up for dinner not realizing he had cut his arm.

“Kenneth is bleeding and he has HIV,” a personal support worker repeated four or five times, her agitation escalating.

“There was about 30 seconds of silence,” Poon says. “By later that night, everyone on my floor knew I had HIV.”

Poon’s table mates stopped talking to him and asked staff to pass him the bread and juice at each meal.

“I didn’t get depressed when I got HIV. I’ve dealt with it for 25 years. I didn’t get depressed when I went blind. Life moves forward. But I became so depressed that my (HIV-positive) status was disclosed and that I had nothing in common with the other residents.”

Poon, now 50, contacted Casey House staff, who went into the home — as they’ve done since with other homes — in hopes of alleviating concerns.

“I think the experience in long-term care is that really strong homophobia exists and (so does) a really strong fear of transmission,” says Karen de Prinse, chief nursing executive at Casey House. “That’s been our clients’ experience — that it’s a very difficult environment to get what you would call ‘quality care.’ ”

De Prinse and many others in the HIV/AIDS support community have a lot of sympathy for long-term-care homes. If anything, the hurdles faced by long-term survivors point to bigger issues around aging in Canada — the severe shortage of trained geriatricians, nurses and personal care workers specialized in dealing with the elderly.

“We don’t have a health-care system that can actually deal with this,” says Rourke.

It’s concern for long-term survivors has spurred Casey House to propose a new day-health program — and a new downtown facility — that would serve 200 people with HIV/AIDs, offering checkups, dietary advice, social interaction and programs aimed at keeping them healthy at home as long as possible.

As for Poon, he is now living in a downtown apartment with his guide dog Aiyden and gets help on weekends.

“I think I did a good deed as the first HIV resident at that long-term care home. Now they have taken on two more people with HIV.”

Scientists are scrambling to understand — and treat — the virus’s unexpected impact on the brain, says Rourke. It seems to be playing out in two ways, depending on what part of the brain the virus attacked and how long it took to diagnose and start treatment.

In about half of cases, long-term survivors suffer depression, short-term memory loss, difficulty multitasking and trouble retrieving words, all of which can make it difficult to hold down a job.

In more extreme, but rare, cases where the virus seems to attack the frontal lobe, long-term survivors can barely function on their own.

It’s as if their social filters are destroyed, causing them to forget medication, act sexually inappropriately or make lewd comments that make it difficult to fit in anywhere, let alone in nursing homes full of folks who grew up when men having sex with men was still a Criminal Code offence. (The law was changed in 1969.)

At Toronto’s McEwan House, one resident with dementia started changing the water in a 100-gallon fish tank and left midway through to get a coffee, flooding the home and shorting its electrical panel.

“It’s been known since the early days of HIV/AIDS that it causes some cognitive decline, but people tended to die quickly,” says Michael Blair, former project coordinator at McEwan House, established 20 years ago as supportive housing for those with HIV/AIDS and addiction and mental health issues. “Now we’re seeing it play out in the long term.”

He’s had calls from staff at long-term-care facilities outside Toronto asking if McEwan can take residents with HIV and dementia that they are finding difficult to manage.

Fudger House, one of 10 long-term-care facilities run by the City of Toronto, considered creating a separate wing for those with HIV and AIDS in its 45-year-old facility, which has mainly four-bed wards and semi-private rooms. In the end, staff opted to integrate them.

“We have been able to handle the cases we’ve had so far,” says Fudger administrator Lorraine Siu. As the number of residents with HIV/AIDS increases, or their ailments become more complex, the home the home plans to increasingly partner with places like Casey House.

How to best care for residents with HIV/AIDS is just one challenge facing long-term-care facilities, says Christina Bisanz, chief executive of the Ontario Long-term Care Association. “It’s not always possible to integrate people with specific needs in with the frail elderly.”

Homes are already so stretched trying to cope with older, sicker residents, the OLTCA is asking for a 2 per cent increase from the province this year to help cover those extra costs, she says. That money would do nothing to add beds or reduce waiting lists.

Nor will it do anything to ease the fears of long-term survivors like Jim Ayerst, who was housebound three months last summer, so crippled by vertigo that he had to crawl around his apartment and entrust his beloved 12-year-old dog, Herschel, to a neighbour.

“My fear is getting to the point where I’m not sick enough for Casey House and too sick to stay at home, even with nursing help. There are times I just want to stop all the drugs and let nature take its course.”

Ayerst pauses to look at Herschel.

“I say that when I feel sick. Tomorrow, I could be doing cartwheels down Church Street. You never know with this incurable, bloody disease.”



Susan Pigg focuses on issues about aging and baby boomers. spigg@thestar.ca

Online Jeff G

  • Administrator
  • Member
  • Posts: 11,798
  • How am I doing Beren ?
Re: When HIV moves into nursing homes
« Reply #1 on: February 27, 2011, 12:00:13 PM »
Its a sobering subject for those of us old enough to consider the possibility that we may need long term care .

I did a web search for long term care facility for gays and nothing came up but the article you mentioned . I have read about gay retirement community's that offer assisted living but its not the same long term care . 

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: When HIV moves into nursing homes
« Reply #2 on: February 27, 2011, 04:38:57 PM »
I am so gonna be dead before then, and if not, everyone is gonna get merry hell and I will win and they will move out. - matt
"The object is to be a well patient, not a good patient"

Offline mikeyb39

  • Member
  • Posts: 931
Re: When HIV moves into nursing homes
« Reply #3 on: February 27, 2011, 10:02:22 PM »
i think some folks get off on posting grim stuff like this.  just saying.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Online Jeff G

  • Administrator
  • Member
  • Posts: 11,798
  • How am I doing Beren ?
Re: When HIV moves into nursing homes
« Reply #4 on: February 27, 2011, 10:15:20 PM »
i think some folks get off on posting grim stuff like this.  just saying.


LOL ... yeah we should always keep the topics in living with lighthearted  ;)

Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Re: When HIV moves into nursing homes
« Reply #5 on: February 27, 2011, 10:25:45 PM »

LOL ... yeah we should always keep the topics in living with lighthearted  ;)
I agree --- like HIV Disneyworld  ;D   LOL
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline buginme2

  • Member
  • Posts: 2,947
Re: When HIV moves into nursing homes
« Reply #6 on: February 27, 2011, 10:51:21 PM »
At least its not another thread about anal warts or anal cancer.

Offline mikeyb39

  • Member
  • Posts: 931
Re: When HIV moves into nursing homes
« Reply #7 on: February 27, 2011, 10:54:39 PM »
haha...true true
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline leatherman

  • Member
  • Posts: 6,201
  • Google and HIV meds are Your Friends
Re: When HIV moves into nursing homes
« Reply #8 on: February 27, 2011, 11:22:58 PM »
it's not like any of us should be concerned as some members from here will be having these problems in the very near future (it not already). It's not like those of us younger and healthier could/should know about these situations to try to improve them for our friends.

it's not like the science shows that HIV itself is responsible for accelerated aging, and we will probably all find ourselves in these situations in the future and could/should seek to improve these situations before we ourselves require these services.

I'm sure the future, near and 20 yrs away, will just take care of itself and there's no reason for any of us here to worry about this sort of grim stuff.

of course, as more and more ADAPs and Medicaid programs get defunded, pozzies will just start dying off without meds anyway and won't need to be concerned about "elderly" services when they're only in their 50s and 60s - cause they won't be living that long in the first place.


I'm sorry, I'm usually not this sarcastic; but the shortsightedness of some comments here surprised me. If these sorts of threads aren't your cup of tea it's probably wiser to just move along and leave the discussion about real problems and other "grim stuff" to other people.

mikie b
(who has just spent this past week quite sick from anal wart treatment and still isn't feeling so well;
and who doesn't think that anal warts, cancer, and no services for pozzies suffering from "elderly" problems is very funny at all)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline GSOgymrat

  • Member
  • Posts: 5,029
  • HIV+ since 1993. INTJ
Re: When HIV moves into nursing homes
« Reply #9 on: February 28, 2011, 12:03:55 AM »
Has anyone looked into long term care insurance? I noticed it at my employer's benefit fair.

Online Jeff G

  • Administrator
  • Member
  • Posts: 11,798
  • How am I doing Beren ?
Re: When HIV moves into nursing homes
« Reply #10 on: February 28, 2011, 12:14:37 AM »
Has anyone looked into long term care insurance? I noticed it at my employer's benefit fair.

If its anything like the supplemental policy's I looked into to help cover some things my medicare doesn't pick up it may well be too expensive for the average person . Perhaps in 2014 when some more of the healthcare provisions kick in it will be more affordable .

The least expensive supplemental I could find was $1200 monthly .

I would be intrested to know what others have found while looking for supplemental , long term or high risk also .

Offline emeraldize

  • Member
  • Posts: 3,348
Re: When HIV moves into nursing homes
« Reply #11 on: February 28, 2011, 12:22:09 AM »
I've not, but when I thought about it all I could envision was an exclusion for pre-existing conditions or a premium to more than counterbalance. I suppose the prudent thing to do is look into it.

Offline mikeyb39

  • Member
  • Posts: 931
Re: When HIV moves into nursing homes
« Reply #12 on: February 28, 2011, 01:22:50 AM »
i appologize if i offended anyone with my comment.  I log into these forums in hopes to find positive things to grasp onto. Being new diagnosed i guess its not easy to think about things like that, but reading thru the article i can see the concern. 
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline SteveInToronto

  • Member
  • Posts: 55
Re: When HIV moves into nursing homes
« Reply #13 on: February 28, 2011, 08:04:35 AM »
I didn't post this article in order to back a truck full of doom-and-gloom into your yard, mikeyb... although let's be realistic here and acknowledge that HIV isn't all rose petals and chocolate mousse -- it sucks and it looks like it continues to suck as we age.

I'm sorry you think I get a kick out of being the harbinger of dread. That's really not the case. I just hadn't seen this particular issue discussed here before, and thought it might be relevant. Being able to prepare for the future was one of the main reasons I joined this forum, and ageing is one of those things everyone gets to look forward to. The future depicted in this article certainly isn't everyone's, but this reality has fallen on some of the people I share my city with, and as such it's relevant and important and shouldn't be ignored.

Now, as other have pointed out... back to the uplifting topic of anal warts...

Offline Dachshund

  • Member
  • Posts: 5,958
Re: When HIV moves into nursing homes
« Reply #14 on: February 28, 2011, 09:51:22 AM »
I guess some think it would be more appropriate to put this topic in LTS. Makes it easier to keep on the rose colored glasses. I am puzzled by folks that have put multiple peepee's up the ol' pooper and then are surprised when warts start a bloomin'.

Offline edfu

  • Member
  • Posts: 1,084
Re: When HIV moves into nursing homes
« Reply #15 on: February 28, 2011, 08:58:41 PM »
I'm sorry some here are bothered by having to read about such annoyingly pesky problems like anal warts and cancer or aging with HIV.  Stay well, guys!   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Online wolfter

  • Member
  • Posts: 4,541
Re: When HIV moves into nursing homes
« Reply #16 on: March 01, 2011, 09:36:44 AM »
Haven't you all heard?  HIV/AIDS isn't a big deal!  Maybe this is another topic that separates newbies from LTS.  
I find many threads that aren't relevant that I can't add anything constructive to, so I simply don't post and hi-jack what others might find important.

Until you experience some of the issues that many LTS have endured, many won't comprehend the terror and heartache that accompanies this disease.  

That's my viewpoint and I'm sticking to it!

Maybe I'll just stick my head up my ass and not worry about the future and pretend this was that party I always wanted to host.
« Last Edit: March 01, 2011, 09:39:04 AM by wolfter »
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: When HIV moves into nursing homes
« Reply #17 on: March 01, 2011, 03:43:21 PM »
Haven't you all heard?  HIV/AIDS isn't a big deal!  Maybe this is another topic that separates newbies from LTS.  
I find many threads that aren't relevant that I can't add anything constructive to, so I simply don't post and hi-jack what others might find important.

Until you experience some of the issues that many LTS have endured, many won't comprehend the terror and heartache that accompanies this disease.  

That's my viewpoint and I'm sticking to it!

Maybe I'll just stick my head up my ass and not worry about the future and pretend this was that party I always wanted to host.

In the last couple of weeks the biggest difference I've seen between the newly diagnosed and the LTS is that those of us who are only recently diagnosed (even me with my grim diagnosis) are filled with hope.  No amount of nay saying will crush this or strip me of my positive spin on life.  You only have one life, why on Earth would you spend your time being so negative?  Yeah the article is not fun, but I'll make it through and adjust like I have so far.

Online wolfter

  • Member
  • Posts: 4,541
Re: When HIV moves into nursing homes
« Reply #18 on: March 01, 2011, 04:21:22 PM »
That's totally acceptable as long as your positive spin on life does not deg redate what others feel.  I personally have lots of hope and don't wallow in the throws of negativity, but I don't enjoy being told what is relevant and what is not.  My entire point was, if someone does not like the content, or it doesn't pertain, just walk away!

Most of the new infected younger folks are not even remotely close to dealing with the issues of what the original point of the thread was.  Perhaps they will age less slowly than those of us who didn't have quality treatments that pushed us into middle age with problems akin to the elderly.  This isn't about negativity, it's about realism and preparing for what will be a reality for many.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Dachshund

  • Member
  • Posts: 5,958
Re: When HIV moves into nursing homes
« Reply #19 on: March 01, 2011, 04:43:57 PM »
In the last couple of weeks the biggest difference I've seen between the newly diagnosed and the LTS is that those of us who are only recently diagnosed (even me with my grim diagnosis) are filled with hope.  No amount of nay saying will crush this or strip me of my positive spin on life.  You only have one life, why on Earth would you spend your time being so negative?  Yeah the article is not fun, but I'll make it through and adjust like I have so far.

No one is trying to strip you of anything Mary Sunshine. But you will age, infected or not, and most likely spend the end of your life in a nursing hope. Three fourth of the elderly do. Hopefully you'll find a compassionate orderly willing to wipe your AIDS infected ass.

Offline woodshere

  • Member
  • Posts: 1,477
  • ain't no shame in my game
Re: When HIV moves into nursing homes
« Reply #20 on: March 01, 2011, 04:47:19 PM »
In the last couple of weeks the biggest difference I've seen between the newly diagnosed and the LTS is that those of us who are only recently diagnosed (even me with my grim diagnosis) are filled with hope.  No amount of nay saying will crush this or strip me of my positive spin on life.  You only have one life, why on Earth would you spend your time being so negative?  Yeah the article is not fun, but I'll make it through and adjust like I have so far.

I was diagnosed 5 yrs ago. I don't consider myself a newbie and certainly not a LTS.  I think there is absolutely nothing wrong with having a positive outlook and hope when dealing with HIV.  However to be led blindly to some sort of polly anna existence without realizing that none of us know what will happen after being on the chemicals we take on a daily basis for 10 or 15 years is not only somewhat ridiculous but also dangerous.  It's not being negative, it's being realistic.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: When HIV moves into nursing homes
« Reply #21 on: March 01, 2011, 04:56:16 PM »
I was diagnosed 5 yrs ago. I don't consider myself a newbie and certainly not a LTS.  I think there is absolutely nothing wrong with having a positive outlook and hope when dealing with HIV.  However to be led blindly to some sort of polly anna existence without realizing that none of us know what will happen after being on the chemicals we take on a daily basis for 10 or 15 years is not only somewhat ridiculous but also dangerous.  It's not being negative, it's being realistic.

Being realistic involves a lot of things, like taking into account that we honestly don't know what causes the issues seen in people that are currently on the "Gray" edge of the epidemic.  Perhaps it was living with the virus uncontrolled for 15 years or maybe it was the early meds.  It might simply be living with the virus in general.  To play Cassandra and say that each and every one of us will suffer the same fate as the unfortunate few mentioned in this article is a little dramatic.  There's always the chance of a full or functional cure, or that these problems manifested as a result of living with the virus before treatment.  Time will tell sure enough.  I am prepared to face any of the possibilities of living with this disease and I know it won't be happyfun time always, but letting myself dwell on the depressing is just a waste of the time I do have.

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: When HIV moves into nursing homes
« Reply #22 on: March 01, 2011, 05:00:39 PM »
No one is trying to strip you of anything Mary Sunshine. But you will age, infected or not, and most likely spend the end of your life in a nursing hope. Three fourth of the elderly do. Hopefully you'll find a compassionate orderly willing to wipe your AIDS infected ass.

Could it be that Hellraiser has found the *Fountain of Youth* and doesn't have to worry about getting old, stick around for about another 10 years folks it's quite possible I may be able to tell you what it will be like living with HIV in a nursing home... ;)

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: When HIV moves into nursing homes
« Reply #23 on: March 01, 2011, 05:04:48 PM »
Hope to see you in Washington Annie, then we can compare how crap are pension plans are (cos mine's screwed), get angry and do a few shots with stoney-faced Pres Lincoln looking down.  :)

- matt
"The object is to be a well patient, not a good patient"

Offline woodshere

  • Member
  • Posts: 1,477
  • ain't no shame in my game
Re: When HIV moves into nursing homes
« Reply #24 on: March 01, 2011, 05:09:59 PM »
Being realistic involves a lot of things, like taking into account that we honestly don't know what causes the issues seen in people that are currently on the "Gray" edge of the epidemic.  Perhaps it was living with the virus uncontrolled for 15 years or maybe it was the early meds.  It might simply be living with the virus in general.  To play Cassandra and say that each and every one of us will suffer the same fate as the unfortunate few mentioned in this article is a little dramatic.  There's always the chance of a full or functional cure, or that these problems manifested as a result of living with the virus before treatment.  Time will tell sure enough.  I am prepared to face any of the possibilities of living with this disease and I know it won't be happyfun time always, but letting myself dwell on the depressing is just a waste of the time I do have.

Why is it when someone speaks about HIV in any other terms than positive and happy they are said to be negative or debbie downers.  I dare say LTS have had and have plenty of hope and positivity about them, otherwise doubt they would be here.  i just think it is mentally better to be prepared for the bumps that might occur rather than ignore the fact they are there and then when one smacks you upside the ass say "Whoa wasn't expecting that!"
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Online wolfter

  • Member
  • Posts: 4,541
Re: When HIV moves into nursing homes
« Reply #25 on: March 01, 2011, 05:19:43 PM »
My first nursing job was in a geriatric extended care facility.  I worked third shift and just loved some of those people and still remember them to this day.  2 patients on my ward were Velma and Al.  They were probably at least 90 at the time, but looking back, they could have only been 70 since I was so young.  We had a nightly ritual, I would bring each of them a cig and a beer to share.  They never failed to show up at my station when I reported to work.  They sat in the lounge til my first break when I'd give them their treats.  In those days, you could smoke inside the facility.  Per their familys' requests, they were not allowed to smoke.  Those 2 would shuffle quitely down the hall and head to their rooms content with the small things in life. 

I never felt guilty about providing them with that little happiness and I know that if I'm ever forced to live in one of those places, someone sure as hell better bring me a nightly glass of white zin.  Then in my final days, they better be utilizing that iv drip. ;D
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline leatherman

  • Member
  • Posts: 6,201
  • Google and HIV meds are Your Friends
Re: When HIV moves into nursing homes
« Reply #26 on: March 01, 2011, 05:27:48 PM »
but letting myself dwell on the depressing is just a waste of the time I do have.
but one doesn't have to dwell on the depressing when reading these kinds of articles. One (as in the young healthy ones for whom this is not a current problem or for whom this might not be a problem in the future) could surely use this information and stories to advocate on behalf of those suffering from these issues.

Perhaps this accelerating aging and the associated problems are caused from the earlier meds or from going too long before being medicated (which is roughly 1/3 of all diagnosed HIV/AIDS - so that still means a lot of younger positive people will have to face these kinds of issues in the future). Wouldn't it be great it all those younger, vibrant pozzies who don't want to think about these things would get off their butts and help those older, graying pozzies as they suffer the indignation of nursing home living while only in their 50s? Wouldn't it be great it all those pozzies with their zeal for life would get out there and advocate the legislators to properly fund research, treatment, and nursing homes?

Rather than look at these issues as the depressing things, the grim stuff, that you don't think will happen to you, people should learn to look at these kinds of issues as something that IS happening to fellow pozzies, and wonder how we, who don't have these problems, can help those other people. I'm sure we'd like to think that in our times of crisis someone would come to our rescue. The flip side of that coin is that we must be to ones to come to the rescue for others in their time of crisis. It's fine it you don't think aging problems will happen to you but it is happening to some people and they could use help. The plus to helping is, in case you're wrong and someday you end up with the same situation, you will have already helped put services in place to help yourself.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,945
Re: When HIV moves into nursing homes
« Reply #27 on: March 01, 2011, 05:37:14 PM »
I was a nursing home resident for 7 months, and I can tell ya, it sucks ass-big time.  At least the one I was in-the aides didn't give a shit, and found humor in other's physical and mental misery.  It's terrifying to think about having to return to a place like that.  And being a LTS'er, and aging quite rapidly, it's even more terrifying. 

But this is reality for many.  If some of the newer diagnosed don't like reading this, then read something else.  To complain about relevant articles being posted is kiddy like, and very naive.  I'm not a doom and gloom, but some things can't be denied.

And if I go back into a nursing home again a bit later in life, I hope someone brings me a lot of drugs.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,668
  • 31 Years Poz
Re: When HIV moves into nursing homes
« Reply #28 on: March 01, 2011, 05:43:45 PM »
In the last couple of weeks the biggest difference I've seen between the newly diagnosed and the LTS is that those of us who are only recently diagnosed (even me with my grim diagnosis) are filled with hope.  No amount of nay saying will crush this or strip me of my positive spin on life.  You only have one life, why on Earth would you spend your time being so negative?  Yeah the article is not fun, but I'll make it through and adjust like I have so far.

It is attitudes like yours that keeps me away from these forums. I am so tired of people putting words into the mouths of LTS, as if any newly diagnosed, has any clue what it is like to have lived the past 26 years with HIV. You also seem to think that we have no hope or are nay-saying, because we insist on sharing our reality, but not as a harbinger of things to come, instead we try to remind people that HIV remains a deadly disease. What I do find interesting however, is that rarely does a LTS tell others how they must feel, but not you. Just because we express concern about something that MOST PROBABLY will affect LTS, does not imply anything to others, but you have no problem telling LTS how we are to feel or what our words "really" mean.

Online wolfter

  • Member
  • Posts: 4,541
Re: When HIV moves into nursing homes
« Reply #29 on: March 01, 2011, 05:44:40 PM »
Well said Leatherman.  We didn't get to where we're at today by sitting back and enjoying the rosy glow of this disease.  I would venture to say that one thing that unites many LTS is that we had positive mental attitudes.  I never accepted it as a death sentence even though the experts said it was.  And to now be called negative Nellies is almost insulting.

I can just imagine the elder proms that we'll hold when our times come to enter those places.  Hopefully, we'll have lost a lot of vision by then....Oh, and a viagra vending machine should be mandatory.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online wolfter

  • Member
  • Posts: 4,541
Re: When HIV moves into nursing homes
« Reply #30 on: March 01, 2011, 05:50:56 PM »
It is attitudes like yours that keeps me away from these forums. I am so tired of people putting words into the mouths of LTS, as if any newly diagnosed, has any clue what it is like to have lived the past 26 years with HIV. You also seem to think that we have no hope or are nay-saying, because we insist on sharing our reality, but not as a harbinger of things to come, instead we try to remind people that HIV remains a deadly disease. What I do find interesting however, is that rarely does a LTS tell others how they must feel, but not you. Just because we express concern about something that MOST PROBABLY will affect LTS, does not imply anything to others, but you have no problem telling LTS how we are to feel or what our words "really" mean.

I sure hope you're not avoiding the forums as I've always found inspiration in your thoughtful posts.  It's kinda like sharing vacation photos, they're more meaninful if others were there with you.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: When HIV moves into nursing homes
« Reply #31 on: March 01, 2011, 06:47:16 PM »
It is attitudes like yours that keeps me away from these forums. I am so tired of people putting words into the mouths of LTS, as if any newly diagnosed, has any clue what it is like to have lived the past 26 years with HIV. You also seem to think that we have no hope or are nay-saying, because we insist on sharing our reality, but not as a harbinger of things to come, instead we try to remind people that HIV remains a deadly disease. What I do find interesting however, is that rarely does a LTS tell others how they must feel, but not you. Just because we express concern about something that MOST PROBABLY will affect LTS, does not imply anything to others, but you have no problem telling LTS how we are to feel or what our words "really" mean.

Joe, Trey has a big problem with a lot of issues on these forums, and he thinks he knows how everyone feels or should feel on certain topics, :-[ but in reality he really doesn't ,he's been called on this by many of us LTS, about this many times, but he continues to DO THIS, please don't let this dissway you form posting in these forums, I for one, as well as many others do find a lot of your post very inspiring, and do enjoy reading them  ;)
« Last Edit: March 01, 2011, 06:54:13 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline GSOgymrat

  • Member
  • Posts: 5,029
  • HIV+ since 1993. INTJ
Re: When HIV moves into nursing homes
« Reply #32 on: March 01, 2011, 08:10:44 PM »
I really didn't expect to live this long, much less make it to old age. I am now working extra to prepare financially for getting older although I am not really planning to retire. There is a 80 year old nurse who works the floor full time at my job. My father worked until he was 80 not because he had to but because he wanted to. I really hope that will be me. Like everyone else I am planning for the worst and hoping for the best.

Newbie or LTS, HIV+ or not, everyone is going to face physical decline, whether it happens when you are 50 or 90, so you better get used to the idea.
« Last Edit: March 01, 2011, 08:16:53 PM by GSOgymrat »

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: When HIV moves into nursing homes
« Reply #33 on: March 01, 2011, 08:31:39 PM »
I really didn't expect to live this long, much less make it to old age. I am now working extra to prepare financially for getting older although I am not really planning to retire. There is a 80 year old nurse who works the floor full time at my job. My father worked until he was 80 not because he had to but because he wanted to. I really hope that will be me. Like everyone else I am planning for the worst and hoping for the best.

Newbie or LTS, HIV+ or not, everyone is going to face physical decline, whether it happens when you are 50 or 90, so you better get used to the idea.

Funny you should mention THIS, back in 94 I was told by my Doctor, that I should get my affairs in order, as I'll probably be dead in a few yrs. then in 96 PI's came out, well fast forward from 14 or 15 yrs ago, I'm still here, so, YES, I really do know what the LAZARUS SYNDROME is, I've lived it at least twice in my lifetime, when  Fuzeon came out in 2005 (6) and I hope to see it yet again, if I'm lucky  ;)
« Last Edit: March 01, 2011, 08:41:23 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.