I am 54. Im an american patriot. I believe in the constitution. I believe in freedom for everyone. I have no criminal record. I have worked hard for everything in my life. I am dying of late stage parkinsons. I am in chronic respiratory failure from muscle rigidity. Gold Stage 3. Restrictive and obstructive lung disease due to parkinsons paralysis. My lungs are collapsing. My closest friend is in the same position.I do not want money. I live off 1400$ a month. I am not in debt. I do not receive food stamps and am not on the "dole". I am at the end. I cannot keep my house and dishes clean. I am on the verge of losing my license, my house and whats left of my freedom. I live on two types of respirators. I have 8 doctors and 12 medications i cannot keep track of any longer. I am sorry i am sick. I would not wish that upon anyone. I need someone to help me brush my teeth and light housekeeping. I need someone to help me 6 hours a week to avoid going into a nursing home. I have begged and now im begging again. It took me two dangerous dayss on my roof to hook up my swamp cooler and 3 days to recover. I cannot change lightbulbs, walk, write, read, cook, stand for 5 minutes etc. I have tried to hire housekeeping help for over 30$ an hour. The people do not show up and when they do they are unable to clean a toilet, sink, countertop, they hide in the bathroom and text on thier phones etc etc etc for 30 dollars an hour. I am at the disgraceful position to beg for help.......I have no choice. This is the hardest thing ive ever done. I get angry and sad and scared every day. Im not asking for anything more than 6 hrs a week to help me keep my dignity and to die with dignity and a minimal amount of suffering. I promise i will not take advantage of anyone. Help is crucial. I know everyone is burnt out on the past few years of crap. I can pay a certain amont of money but i need a reciprocal amount of help. I cannot afford to pay for someone that does not help. I cannot constantly beg for help year after year with things like getting my mail, changing lightbulbs, toothbrshing etc. I would not be asking if i had any other choice. I cannot beg every month I dont have the energy left. I would rather be working but i cannot. Please help.
desperate for help.
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beehive23
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Would you mind sharing your location? You can message privately. In order to attempt ideas in hopes of a plan, I need your location. My Daddy is in stage 5 PD. We lost my uncle to ALS. I understand.
There should be social services in your area that could assist you, including caregivers who come to your home. Your political statement at the beginning is confusing to me because I’m not sure what it has to do with your health situation. If not being “on the dole” means you refuse to use the services offered by Medicaid (if you qualify and it sounds like you do) then you may be cutting off your best option for help.
i am in hospice transitions...i cherish everything they do along with social services but there isnt much left they are overwhelmed and the private pay folks that come here sit in the bathroom on the phone texting...they do very little and shoew up 1/2 hr late and leave early for 31$ an hour...
Please, I am happy to help you find help. I would truly love to. And I’m confident many others on here would like to help you too.
I believe by your initial statement you are prefacing with explaining that you are honorable and hard working. I understand. Accepting help is hard. But please, know that it takes a strong man to acknowledge when he needs help. There is no shame in that. Please, love yourself enough to seek out the care you need via organizations or social services that can oversee your care to ensure your needs are met. I would like to help facilitate that if you would want me to. If we aren’t in the same region I can work with my new church (we just moved) to help me find resources.
Well, I’m wary of dipping in to politics but in my experience there are those who are of the moral leaning that we should help each other directly via community and then there are those who will lecture on the subject of helping people from a high perch and think the government should. I’m the former which was not the popular opinion in my home state of CA. That said, although online, to some extent we are community or we at least should be. You have helped us with your experience. It’s our turn. We want to help you. You have my # . I will send you my email in case that’s your preference. If there is anything I can do I will do it. Truly. Others will to. There are good people on here. I’ve written to the only guy in Colorado I know.
So sorry for your situation beehive23. I will send you my contact info and you can reach out to me if you like. Maybe we can figure out a solution. I am also adding you to my prayer list.
Very sorry to hear your plight.. Though I don't live in the US, I know for sure that there are social services and disability payments available to people in your condition. Juliegrace and others have also said it all and confirmed it. Since you're sincere, humble and nice enough to talk about it and seek help here... I'm sure you will be able to receive government help
We don't deserve to be in the situation we find ourselves in. Unfortunately its a cruel world
Please accept the offer of help our friends in the US are extending to you. I'm also praying that better technology will be available to help you with your respiratory and lungs problems. At 54 you deserve better, quality of life matters
I am deeply disturbed by reading your story. I am sorry I cant offer any type of help as I am thousands of miles away from you. Are you living alone at your home? Where are your other family members spouse, kids etc?
Good morning Beehive. I continue to think of you. I understand if for you the idea of seeking government help is repugnant. I relate to that feeling. But, sadly our culture has drifted away from mutual aid societies and assured community connection. But you have thankfully turned to us, your online community. I am confident that others in this community would join me in facilitating and contributing towards the care you need. Please allow me, allow us, the honor of helping you Beehive. It is not just for you. It is for us. The opportunity of being of help to a friend is very fulfilling and to varying degrees all of us on here are suffering and fighting our own battles. Pulling together to help one of our own, you Beehive, can help give meaning and purpose to our situation. Please Beehive. Please help me put my prayers of helping you in to action. ❤️
Underfunded and understaffed indeed. Please, can you be as specific as possible. What would you optimally want us here on HU to do? For $31 an our I assume you are going through a care agency?
If not, I recommend going through a care agency bc the management over site would not or should not put up with this.
Hiring caregivers for my Dad was often a nightmare. But good ones are out there. We eventually found someone who ended up being like family. She was a woman from Fiji with an angels heart.
And I know 1 man in Colorado. I will reach out to him.
Beehive — I’m so sorry. I have enjoyed your practical advice from previous posts. It’s terrible that your family and town are of little help.
For others reading here, Western Colorado is beautiful but quite isolated, especially depending how close to the main freeway and tourist towns such as Durango and Grand Junction.
Ccraspberry— you seem to have some experience here. Depending on location, Utah (e.g. Moab) may be closer and there may be many van life types looking to make some cash. I wonder how we can reach those groups. Plenty of people drive around Western Colorado to visit the beautiful mountains and landscape, especially coming into spring, looking to spend a few months in their RV / van. And they would like some simple, flexible work.
Beehive, how rural is your location? Does the property have room for an RV? How far from services are you? County instead of city I’m guessing so no police just sheriff? Unfortunately that matters when managing people caring for someone. Good morning GinnyBerry, Like many people, I have experience with finding help and care for ill friends and family. My biggest concern at present is his increasing vulnerability combined with a lack of oversight. Let’s say I or we, were to find someone to either drive in to help or stay on the property, they will be caring for Beehive with very little oversight and accountability. As PD takes over one’s abilities, vulnerability increases proportionally, and although wonderful caregivers exist, they are human and need oversight. Living somewhere rural is a big obstacle.
With my Dad, when he needed full time live in care, at one point I find a wonderful couple who lived in an RV on his property but I had to install security cameras that I monitored constantly to ensure they were doing what was needed. Given his care was 24-7, I was constantly watching those cameras from my home. And I would show up there multiple times a week unannounced.
Beehive, if where you are is rural as I suspect it is, it is my hope that you will consider moving closer to care and services.
on 5 acres overlooking the city, 10 minutes above the city, sherriff only, have been trying to go assisted living for months but waitlist is up to 3 years. thank yo though.
You dont have to wait 3 years. You can find a place soon. I am very confident in that. Adult Protective Services can help.
I’m very relieved you are not farther out. Thank you for sharing that. There are placement services that can help you find openings. They will not charge you. They get a commission from the place you ultimately pick. I used a local one but there are National ones to start with.
“Assisted Living Referral Services: How They Work & How to Use Them”
If you are willing to wait they will make you wait indefinitely bc there is a constant stream of people being released from hospitals that can not or will not return home. You need to be prioritized.
Another one, this place is Colorado. They can be a starting point at least. If you want to take this offline, I messaged my # a day or two ago. I am happy to make the calls for you if that can help. We can help get you in a safe place where you can feel assured of care. I’m so glad you are willing to move. That changes everything.
i got yor number and i think i replied my email so far.....im inundated this week with dr appointments and yet another home health agency. cheers thank you!
I’m so sorry Beehive that you are in a position where you feel like this. That says everything about our global society and absolutely nothing about you.
I am too far away to be of any practical use to you but am fully aware that we have the same issues here.
I sincerely hope that some assistance can be organised for you and I could not read your post without replying. I am also so sorry your family are deluded about your condition.
My thoughts are with you and I’m so sorry I am unable to offer you any practical support.
So terribly sad... May you be granted all the services you need, strength and peace and if there is anything could be done to help you, please let me know. 🙏
Beehive, I am so so sorry. Know that we all care about you wherever we are. Everything else plus the solitude. If we can’t come to see you, at least we can talk to you here. And if there’s anything else from across the country, please let everyone know. If loving thoughts from a group that cares about you could heal, you would be good to go. At least maybe it can warm your heart a little bit. Also, you are wonderful. You’re an important part of this community.❤️
relocating and giving up my house and property is and has been a big hurdle....3 yrs ago i was friends with a pwp ..elderly gentleman in a nursing abuse home in houston Texas....i sent him a ticket and moved him here with me.....he immediately called a friend of his from the nurse home when he got here and said.."i can go outside whenever i want...." thats my take on nursing homes....cheers.
in western colorado a law was passed that requires you call the sheriff and they respond then they contact adult protective services....where i live that wold invite a ruby ridge gunfight literally because of my crazy family...cheers.
I get it. Have you heard of a 6 pack? (Not beer). It is when a residential home is converted to a place for care. Much more freedom. There is oversight but not corporate. It’s a good balance. I highly recommend that.
Hello, friend. I am sure that in the condition you describe that you are in, you qualify for social security disability and you also qualify for medicare/medicaid. This should help with paying for assistance that you need. Try to hook up with a social worker to get you going on these things. Good luck. Youre young, almost as young as me!
yes thank you have been on all the above since 2013..i have a social worker...the worker part is very scarce here.....social workers can take up to weeks to return calls even with my private insurance company...nevermind there are less and lress home health staff my tenth appointment in home was cancelled yesterday.....hang tough...cheers!
How is your mail delivered to your home? Is it delivered to a box that is on the street or road? Would it be helpful if the mail was delivered to a mail box that is at your door? There are some instances where if your doctor provides documentation to the post office they will deliver the mail to your front door or porch so that you do not have to walk down to get the mail.
its gated property the mailbox is 1/8th of a mile driveway...family (not me) who live on property as well in another house have "we will shoot you signs" up ..delivery people are often scared to come on the property its such a mess. thank you though ill look into that.
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