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Topic: Finding an Out of Home Hospice

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: May 9, 2015 12:04AM

anotherday2015 wrote:

I am looking for a hospice where I can stay. I do not own a home and I cannot pay rent anymore. My cancer is aggressie, in my bones and my right lung. I am not doing further treatment and the subject is off-limits. No $, no family, no help.

Whose 'job' is it to find a place. I am worn out. I can't be my case manager anymore, dealing with eerything and irtual homelessness. I'm at mom's but need out--yesterday. Toxic, not set up for my needs. Story of my life. I need someone to take care of me.

Many organizations gie old phone numbers, don't call you back etc. Docs tell staff to put a call in to social serices, no return call. I know there is a state by state list.

I want to enjoy the time I hae left before life becomes days just laid out. I am a well-educated, professional woman. I worked hard, paid my dues, only to lose all that I worked for when dx Stage III at 46.

I am tired of wasting my precious time. Why is there nowhere to go? Why is this information so hard to find? What do you hae to do? I don't want to waste another precious day in a bad situation. I still want to do things, not be on the phone all afternoon running around in circles until I can only lay in bed all day and eentually die? What is left of my treasures and 'stuff' is in storage 325 miles away. At minimum, I want a room and bathroom of my own for me and my emotional support dog (my only companion), space for my food and other stuff. A sunny place where I can plant a few flowers, and enjoy nature, be able to get to a bus stop, stores, and the library on the bus or in my power wheelchair.

Surgery 6/7/2007 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Surgery 10/7/2014 Lymph node removal: Right
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May 9, 2015 02:25AM fifthyear wrote:

I know this is the right forum for your post, but perhaps you want to post this also in Stage IV forum. I said that because the ladies in the Stage IV forum are SO VERY KNOWLEDGEABLE about EVERYTHING. Someone there will guide you in the right direction. They are supportive, loving, caring and so so smart. Try them. I wish you luck with your search.

Dx 2007, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy Breast
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May 9, 2015 02:50AM leggo wrote:

Hi anotherday. So sorry for what you're going through. I'm not so sure that "hospice" is what you're looking for. Admittedly, I'm in Canada, and only know of one US friend's personal experience, but in order to be accepted into hospice, you will need a referral from a physician, who will need to state that you have 4 months or less to live. You will also likely have to sign a DNR order. I can say with some certainty (I hope someone in the US will correct me if I'm wrong), that it will not be your own liveable space. They're usually in a group setting, much like a nursing home, or, if you find a private one, will still be shared space. By definition, hospice means you will need continuous end-of-life care, so you can never be "alone". If you plan to still do things such as taking trips to stores and libraries on your own, I don't think a physician is going to recommend "hospice" care. Perhaps assisted-living would come closer to what you have in mind, though I'm certain that you would need a medical referral to get on a waiting list for that.  I'm pretty sure you wouldn't have a space that would accommodate (or even accept) a pet, or provide your own little kitchen and garden. The only kind of facility I can think of that doesn't require a physician's referral and would give you what you're looking for is a senior's facility and those, at least in Canada, are outrageously priced. Where I live, they run at least 3000 bucks a month or more and they provide no medical care other than to check on a daily basis to make sure you're still breathing. That does however, give you your own small apartment-like space and access to a community garden. A pet though, not likely. I really do wish you luck in finding a place that meets your needs. Unfortunately, when we can no longer look after ourselves, our choices are pretty limited and sometimes we just gotta do what we gotta do. 


"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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May 9, 2015 05:18PM - edited May 9, 2015 05:30PM by anotherday2015

Hospice is the answer, but all hae arying requirements for time left before death. Anywhere from 6 months +/-.

I played by the rules--they wouldn't let me work PT during tx for that extra few hundred a month I needed to get by. I was 46 and just diorced. My ex wrecked our credit to be spiteful, while I was out of state oerseeing and correcting the screw ups in my dad's final days of hospital/nursing home care.

I hae been in 5 bad share situations for 3 years, and in all but the last one, I was NED. Just had limitations.

Just because I hae a few drops of energy to do things, does not mean I hae to stay in an emotional unhealthy and physically unsafe place. By shopping, I''m not talking about walking the malls, I'm talking about food. Last time, I got so depressed, I was gun shopping.

Today, I can't take care of my mother and her psychiatric issues. I was the family 'go to' person for 40 years. When I got sick, most of the gene pool ran for the hills. My 'family' is extremely dysfunctional and it goes back two generations for me.

My dog is an emotional support dog. In the US, landlords cannot discriminate any more. It isn't a problem in the EU, where I resided in the past.

A repeat DUI totaled my car 2.5 years ago.I just started getting restitution, a whole $6.25/month. Wow-wee. Buses do not run on schedule and serice is limited.

Nursing home/assisted liing is not the answer for me. They are horrifically expensie and fraught with staff problems. Anyone that wakes me up for breakfast at 6 AM, or I makes me leae the room on their conenience to clean is not going to be met by a happy camper. I can do this for myself right now, not perfectly, but good enough. I am a ery independent person.

The root of the problem is the lack of income-based or transitional housing. For four decades, Congress has been plundering social security funding for social serices, housing, education and healthcare to fund imaginary wars, sticking our nose where it doesn't belong, and taking care of the world citizens while US citizens get less and less.

My first Master's was in public administration, with a focus on non-profit organization management. I just finished 4 years of graduate work in global/higher/adult ed and international student. I am well ersed in the issues. Then, cancer came back like a tidal wae.

I think I desere better than this. Being warehoused in high rises, often in bad areas, or out in the middle of nowhere is not the answer. I hae had 7 years of isolation. I don't want to just pass time until I die. Otherwise, shoot me now. I hae no QOL.

Surgery 6/7/2007 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Surgery 10/7/2014 Lymph node removal: Right
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May 9, 2015 05:50PM - edited May 9, 2015 06:11PM by leggo

Ya....probably should have kept my mouth shut. Don't do or care about US politics. Disregard my previous post. I am 100% sure though, you won't get into hospice without a medical referral, so I have to think any roof over your head is better than no roof, especially if/when you're that sick. Just my opinion...I get you might feel differently. You're going to need someone to provide your care. I hope it all works out for you, and again, sorry about the unhappy position you find yourself in. 

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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May 10, 2015 10:46AM Jelson wrote:

well they certainly don't make it easy, as you have learned much to your frustration. I live in Albany, so was checking out the apartments that I know about. I have included the url for the one my mom lived in (happily!) for 17 years - Ohav Shalom - which although described as senior housing, is not exclusively for seniors. I direct you to the page which clearly states that younger persons with mobility issues are eligible. Other housing options which are subsidized and which are described as senior housing might also be open to young persons with disabilities - I am not sure where you would find them in a convenient list though. The state's office for the aging is pretty much on the ball and might be able to help you.

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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May 10, 2015 02:57PM anotherday2015 wrote:


I hae had medical referrals in 3 states during the past few months. I know how it works, although some will use wiggle-room to be selectie.

I would be better off liing with bad roommates that do many of the same things as mom. They are not supposed to be loing. When your mother does it to you, is hurts to the bone. When behaiour is totally unpredictable, lies told so not to be the responsible one, or she has a wonderful public face and people don't see the other side, it will make you nuts. Like being Cassandra. You hae no idea. All the docs hae known this is abusie and unhealthy and went on during Roung One, but nothing seems to get done to help me. I do not haing any power (i.e. money) to do anything about the situation...but if I was a teen mom, I'd get the farm.

I do not follow politics. I don't hae the time. I am trying to surie. I don't care. Nothing I can do about it and none of us will be here if and when anything is 'resoled' or made law.

I learned a lot about the subject in past schooling. We get more watered down bills bundled with others so members of Congress are happy they 'got their way' and we get garbage. Goernment was set up by our fore fathers not to work, and they did a good job of it.

Surgery 6/7/2007 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Surgery 10/7/2014 Lymph node removal: Right
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May 10, 2015 03:11PM anotherday2015 wrote:


Thank you for your response. The problem goes beyond finding the information. It's getting through the red tape, or waiting until people get around to doing their jobs, and doing things right. In many instances, the system is so broken, knowing what to do is useless.

The thought of spending my last days like this is beyond depressing. I still hae some energy and desire to be more than a lump on a log. I don't like to let precious time slip through my fingers any longer. Getting to the point that I lay in bed, drool, and people wait until I die so they can put someone else in that bed, is beyond depressing. I'm dead now and don't hae to be.

Stupid me for counting on what we're supposed to get. Hasn't worked well from Day One. Guess you need to be someone or are related to someone that gets special treatment. Thought I could go somewhere to peacefully spend time, be important to someone, etc. until the day came that I couldn't get up.

Surgery 6/7/2007 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Surgery 10/7/2014 Lymph node removal: Right
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May 26, 2015 10:46PM blondiex46 wrote:

My mo put me on hospice n with that comes a nurse, social worker a spiritual person n they r helping me with alot of those things.

Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-

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