A long rough journey, need help now
It is hard to explain the Journey of Alzheimer's disease and demenetia to anyone that has never experienced it, it was and remains a journey of greif and loss and solitude that is indescribable. My mom was also legally blind and suffered from over a dozen other deadly diseases. Mom has been gone quite a while now but the journey continues for myself as I suffer from PTSD and some sometimes pretty extreme pain, as I write this I am in pain and confused and frightened and a broken tooth and suffering from hypothermia as well since the furnace died for the third time and now I cannot fix it...as I suffered some pretty severe spinal injuries many years ago...I sometimes was unable to walk and hid out, unable to get any medical care for myself and subjected to a lot of emotional abuse as My problem was invisable, three crushed disks...so sometimes able to function or even have atletic periods. The pain I am having now is different than it was in those early years...not the crushing attacks of crippling pain, but more like a long never ending dull roar and numbness in my legs and feet that seldom sudsides...and frequent dibilitating headaches that cause a lot of confusion at times.
Mom and I had very little help all those years, more years than I can count and more diseases than I even knew existed. Most dementia caregivers I have found over the years experience much of the same thing-the feelings of being deserted by a world that does not care or understand. Caregivers have been pretty much my only friends over the years... And when I lost her and many others at the same time I expereinced a crushing lonliness and fear that cannot be described. My teeth caved in, my roof caved in, everything in the house broke from the appliances to the washing machine to the computer, the shower caved in...I had walked around with a painful abcess tooth and a bunch of skin cancer and pain from injuries for many years that was untreated for a long time and some new problems developed. I have recieved some help and for that I am grateful, but the crises continues...basically because I needed help finding work I could do with three degrees with distinction and honors but now outdated and my skills have declined quite a bit from the fear and the total isolation for so many many years. I had been given medication that had made me dreadfully ill and nearly killed me, it did ruin my hearing. When the roof caved and the floor buckled the house became flooded with black mold and I became very ill till it passed. My garden died. The only visitors that came were some real estate investors that had been to a "pennies on the dollar" seminar to harrass me and some young idiot social workers that complained about their jobs and yelled and gave illegal advice but did not have the employment programs they had promised, only insults and yelling.
Oh there were people that said they would help, but usually they did not, they mostly yelled at me...because I wanted to save my poor beat up old home and perhaps at some point parlay it into an income property or community service project of some sort that I have not yet been able to identify, to give myself an income and leave a legacy in my mom's name rather than end up homeless and destitute without even social security credits or a way to feed myself and my only companion-my beloved cat. caregivers do not get benefits... or help or understanding of the situation they have found themselves in from trying to do the right thing.
I knew I should have replaced the old broken down car I have that almost never runs when I was able, but there was no income and so many other broken things so I didn't and it broke down again and again and again and nobody would even give me a ride anywhere. In fact, I lost my mom even because the car was broken down then a few years ago, and my feet were broken and I was unable to walk to the nursing facility she was at to take care of her myself after she fell and broke a hip on some tubing and by the time I arrived she had been dehydrated and starved into a coma and given a deadly sepsis from a frequent infection she often suffered until I had learned myself from experience how to diagnose it from instinct and experience and to prevent it, but i missed a few days and the "workers" in that hellish awful place had no such instinct or skills.
Anyway, well over a year ago, some rodents ate wires in the car and every major electrical compnent burned out in a chain reaction, the car breaking down again each time I had it repaired again before I could even get it home. I tried to run it every day a little to keep the battery charged, it was good for one start a day usually but it would leave me stranded again and again if I stopped somewhere...and now the timing belt and water pump are out as well and the car has been at another shop again for weeks...and I have been stranded here and ill all winter, isolated and ill a lot and in pain...not knowing what to do about anything and with the computer and the phone out a lot too...but some kind people even mailed me food and some other assistance to keep me alive so yes I am grateful for that but I still do not know what to do. I don't just need money, i don't really even want to ask for it...I need to find a rewarding way to make a living and a way to help others but i don't know what that would be the world has become so...cynical...I need to vet my cat, I need to save my home, I need clothing and food and help and medical care, I need to recover from all the tragedy and the years and years of constant pain and crises. I want the vacation I never had while i tended diapers and oxygen and wounds and screaming etc while people sent me form letters at Christmas bragging about their cruises as my teeth fell out.
I do not know if my old car can be salvaged I only know I am stranded and they don't even want to give me a ride. If i find a way to do a project maybe I can find a new community, this place is pretty but it is mean.
My dream has always been to find a way to form a foundation to help others like myself that have fallen through all the cracks because they gave their lives to help somebody that couldn't help themselves and has no more left...but it is beyond my skills alone and I need to find others to help if that is possible....anywayThis is getting too long and I am in considerable pain today, so I apologize for the length of this and all the typos and errors and I thank you for your consideration and understanding. Peace.
I had really originally intended this to be mostly a blog looking for ideas to perhaps save my home and possibly use it as a finance mechanism to get an income stream of some kind going, preferably a long term one to support not only myself but to start a foundation or find partners to work with to form a strategic alliance to support the causes of Alzheimer's and related diseases and the long term family caregivers that take care of the victims of that disease and are left in dire straights later on...as well as hopefully provide long term security for my mom's decedents that may need any help upon my demise.
Then the furnace went down and I became more and more ill, both physically and emotionally and unable to come up with either an idea or form an alliance really, though there have been some good ideas here and there. Anyway, I still dislike this and am embarrassed by it all , but things are quite critical as I face utility shutoffs again and worse and I am also stranded again without a dollar in my pocket for weeks and sometimes unable to walk well for days or weeks at a time.
A car was donated for me this summer through a charity I had helped out at and had many friends over the last five years, many of whom have died now...but alas, I was now destitute and unable to accept the gift so I passed the donated car along to a young family with a very sick child.
I've not written in here in a long time. My friends at
United Way did very recently help me to procure this reconditioned desktop that I still do not use very well, it took a year but I am grateful...readjusting to a keyboard as for the last couple of years I've mostly used a wonderful little Microsoft tablet that was given to me by a very kind and wonderful person, I no longer have my phone .
So I have indeed been most fortunate to have friends in this world...though not that many as I have been isolated and ill for quite a long long time now, and isolated many years before that with the long battle with Alzheimer's as well as the more than a dozen deadly diseases my mom fought for many years. So while I am sure I have friends in this world I am indeed quite shy and don't really hunt them down...social media these days seems to have a way of ruining as many friendships as it starts, as perhaps you also are aware haha.
also I have not been in the best of spirits for some time, obviously and I owe many apologies for that as well.
Anyway, I know there are much better ways to earn a living online than a crumby fundraiser, and I am a aware of many of them, but without advertising and good knowledge and a following those are not easy either-as those of you that did not grow up in the cyber generation may have discovered...but I do still have a couple of nice free to join product lines that I picked very carefully and a training company with free training you can check out too. the only reason I post in this awful journal of what the last couple of years has been like is because the situation is quite desperate here, critical even, and has been for some time... so if anyone knows where I can get ideas or help please get a hold of me before I go down for good.
The only reason I am still online today is that I had some severe problems with both internet and phone service so I did get some free time. I have had quite a bit of trouble walking this year from time to time and numbness in the feet and legs and some severe headaches as well as some other problems, so I want to publicly apologize if I alarmed or was unkind to my favorite people in the whole world. I am just frightened. :(
me sick-arthritis, injuries, vascular problems and ptsd
house sick-many repairs needed and utilities and expenses
car chronically sick and unregistered
disabled without benefits
seeking appropriate income source for someone that is kind of beat up, over educated with multiple degrees, but perhaps a bit under-skilled in this brave new world.
it was thanksgiving. i was alone and cold and had been 80% paralyzed for over two weeks. no help was sent and i'd already been stranded for years and dreadfully ill all summer unable to move much. the doctor never called back. i had missed the mri ordered a year earlier, i had no ride. after the blackout that i suffered it took me 5 hours to make it to the phone in the next room. i tried to get moving myself. first by playing my horn, i got three fingers moving. i thought i would die thanksgiving so i went out and played my horn in a parking lot. people liked it. they came from hundreds of yards to say thank you. ijust wanted to play, i didn't ask for anything, but they drove home and came back with food and tips and helped me with my chair. it was good. i had not had a dollar in my pocket for months. now the holidays are over and their is no kindness left on the street. but i had one good day. all i wanted was to make music again and to try to make it nice. music is all i have now and internet goons attacking me have taken that away now too these last days of internet even. friends from afar and a couple near have helped or me and kitty would have died. i'm grateful but still very much ill and very sad and frightened. it's been nice a few days but the worst of the winter is usually yet to come. if i fall again i will not ask for help. i will just die. i've been tortured enough and now cannot even type. they are taking my home away. it is all i have and i wanted to use it to create an income and form a foundation to leave behind as a legacy and to help others. but i don't know how alone and i'm very ill. it is very hard to type now, my hands are still quite numb.
sorry, I'm in so much pain today I can't even make it to the bathroom. I guess it's over. all I needed was some way to make a living, and I was abandoned. it looks like it's over, but I wanted to say thank you to the people that did help and try to and there were some-my fraternity brothers that helped clean up the yard and helped me survive the winter along with the nice folks at united way, and my doctor, and some of my internet friends...I can't than them enough... even the nice people that helped me rescue my stray cat friend because I could not take care of him and the friends offering moral support going through their own crises, just too many to even mention and I'm sorry I did not make it. just thank you
simple, but not so simple. need to find expert help. was a caregiver many years, so no retirement or social security help even because many family caregivers get no social security credits...don't want to lose my home but it needs saving and being disabled without any income or benefits (left out of the system) it is much more than I can handle alone now so would consider working with a group to save it and perhaps parlay it into a down payment for an income project, such as a commercial property or creative enterprise of some sort to provide for myself that a worthy charity or group could have the income stream from when I am gone, to honor my mom and the long battle we had with Alzheimer's and a dozen other diseases and try to turn this hopeless disaster into something positive somehow. It is the only idea I can come up with.... Open to ideas but running out of time and have been very sick and stranded a very long time and almost froze to death when the furnace died here trying to come up with an idea or find some help with it. Peace
my mail still stolen for a year by the people that were supposedly here to help instead of yell and be morons, no responses, so medical gone(?), food gone, trying to get low cost internet and phone, furnace dead, old car that was dead almost two years ran today though, thankful...warming up, walking much better now. too late to grow my own food(?) toothache for months, harry bit me, he knows we are about out of cat food. toothache. utilities go soon. gotta do something, but what? have a little money left still but not enough to cover things and have not been able to get it. panicking again. listened to the last recorded message sent to me by "family" recorded years ago...never want to hear that horrible cruel ignorant voice again.
have been on the ropes a very long time now-demoralized, often ill with trouble walking or getting around and alone and even my best friend and companion, my cat became ill. I had a big dream of finding a way to help the cause but I did not have the alliances I needed and now my very survival is at stake after all of this time of continual catastrophes large and small. I am surely grateful to all those that helped and there were many, too many to list, and I apologize that I did not make it...I don't blame anyone or even bad luck, I was simply too weak to fight on alone -crushed by the many years of tragedy, disappointments, illness, pain and injury and desertion....others have had similar journeys, many of whom I have known that are no longer with us. I tried to fight for them too, but the odds and the obstacles were too great for me and for that I am sorry
been a terribly long haul here, from being stranded year after year to the roof caving, money stolen and being left alone and destitute and patially paralyzed and then bullied for it. i truly look forward to death now. i hate this shit. bye
just had another stroke. i think that's 3, not sure, confused. no doctor, no lawyer, not a friend left alive. i wonder where the kityy is. very cold. hungry. been blinded before, vison came back quicker this time. paraylsis back, less severe this time but bad. no food, not a friend in the world to call. everything goes out soon.. no reason to even go on. been bullied enough here. no way to keep home. no reason to try miss everyone, miss being able to use my hands. all hope is gone. i wanted to szve my home, help others. i din't know how
i think i'm tired. this was an awful blog, now i can't write, my hands are still pretty paralyzed. i think this has to be the worst country in the world right now. i don't want to die here on the streets because i wanted to do something good
SO I WOKE UP APARALIZED ONE MORNING AND MY DREAM OF SAVING MY HOME AND STARTING A FOUNDATION SEEMS OVER oops didn't mean to "yell" having some computer issues as usual and my hands are still locked up numb, lost vision for a day but it's back, thank god-no way going back to that er again to take that kind of abuse again-being forced to sign something saying i refused help, asked themm to sign one saying they refused any, so they actually held back a stinky moldy samich and a cab ride neked out of that dump. geez.. mri sched again but again no ride.
had another stroke like blackout last night, lost vision for a while but seems to be returning so i skipped calling an ambulance after the way i was treated there in november and was paralyzed. think i'd rather go blind than ever see those people again so i'll risk it this time
another mid night attack, vision effected, 80 percent right eye, legs better, arms still gone paralysis advancing again. MRI, blood work. pain. tired. long night. hope vision returns. this is getting pretty tiring.
i cant communicate
paralysis advancing again
becoming paralyzed, sitution very dire, no medical help arrived month after month i cannot survive now
so i followed an indescribable rat's maze to nothing thinking one of these agencies somewhere would know how to help, and now i am recovering from paralysis on my own with no help of any kind while people that get paid to pretend to help people only do what they do-make things worse, and not just a little bit but a lot as i face the possibilty of death on the street instead of realizing my dream to save my home and start a foundation to help the cause. it's all been very enlightening and discouraging.
denied cash assistance of 245 after being paralyzed, losing phone and internet, hands still don't work, a neighbor brought some food and an internet friend sent some cat food. there is no way out. i set out to use my home hoping to do a worthwhile project to leave as a legacy now i must die alone at xmas. nobody is listening, nobody cares, but oh yeah, i was offered "counseling" after being roobed, made crippled almost freezing to death, my cat ill, and i was threatened again and a gain and again with violence just for looking for some help. i hate this country i want to die
i did not think things could get worse, then on nov 14th woke up almost completely unable to move. help did not come here still
a month now and still no clue what happened or why i was paralyzed, perhaps the doctor that suggestedMS years ago was right. unfortunately i have no choice now other than to die, maybe i can hold out till christmas if i had any help. this is hard and lonely and i know not what to do at all or how
paralyzed now, a month abandoned, it's all been too much for too many years...all the diseasesand disasters for decades. gave my life to help others and having everything taken away. there is no reason to go on another day
just sorry for the worst blog ever. I only wasted to save my home and use it as an asset to begin a foundation to help the Alzheimer's cause and the plight of caregivers and former ones left out of life and mainstream sometimes for decades, often robbed of any chance of survival. so much has happened now, my cat is even sick and I have no way to survive. in pain for many months and years now left partially paralyzed without any help for nearly a month now and not even any decent medical help, mostly just more abuse, red tape, broken promises and lies as I face total loss off everything. this is ten times worse than even the way they treated my mom, who as bad as she had it, she did have income, a caregiver that loved her and fought for her to the end and decades of unpaid help from the guy that used to have the prettiest garden in the neighborhood and has now been ripped off and abused and liquidated for the pleasure and entertainment of others in a cruel and heartless world to a large degree, giving up my own life for others... but yeah, I guess I'd do it all over again-mom was far fro perfect, as we all are but she was a pretty nice lady and my only ma and between catastrophes we had a few good times despite being deserted by the world and I miss you mom. I'm out of time it looks . and yes it is still very hard to type on a tablet with now almost paralyzed hands, so the writing is not so good and yes my head still hurts from what they did to me.