I'm going to lose it if I don't find some compassion soon

[pink]

I'm new to this site. My Mom was diagnosed with Als 2 months ago and since then, my world has fallen apart. No offense, but where is the compassion for me? All these people nominate me caregiver, yet I am the one that needs taken care of. My Mom is the ONLY family I have people. Yeah. No kids. No Aunts. Just us and she's sick? How CRUEL is that? I don't have any friends either. I had a couple "associates" before this, but we don't talk to anyone. Guess my "stress" was too much for their weak souls to handle. I never go anywhere. All I do is sit in the house and watch my Mom go downhill. I can't leave the house...she needs me there! I've NEVER worked before, she was the one who kept everything up. I don't have the mental capacity for a job, nor would I have a thing to put down anyway. How am I suppose to deal with keeping the house up, taking care of animals, my Mom, deal with no family or friends and so on? I don't even sleep or eat anymore! When I am lucky to fall asleep, I wake up an hour later and if I hear any sound I jump up..I am terrified she's fallen and I run to see if she's ok! By the way, she has fallen and has a broken leg. I can't do this! I'M THE ONE THAT NEEDS COMFORT! People don't care..I've reached out to so many and not one has helped us. We've tried to get the loan modified. Yet, Mom and I have helped so many people. So why arn't people getting some kind of thing together to raise money so the house can be paid off? We've thrown so much money to people, buying them cars, I could go on, but now in our time of need, no one cares! I can't lose my Mom! SHE'S ALL I HAVE!

 

[hopeful warrior]

Have you talked to a local ALS or MDA chapter? There are several things they could suggest, I'd imagine. If you don't mind me asking, how old are you?

 

[sadiemae]

We care. Check back tomorrow and I will give you the # of the ALS society of Nevada. They have a great group here in Nevada. I am in Reno, but there main HQ is in Las Vegas.

 

[pink]

I already know about them. They haven't helped us at all.

 

[sadiemae]

What kind of help are you asking for

 

[Blubear]

Dear sweet Pink, WE CARE! I wish I lived closer to you so I could come and help. It's not healthy to not have ANY outside help. YOU need breaks. YOU are in this disease too. Does mom have any medicare or insurance that would allow another caregiver to come in and help so you can catch a break? Counseling for you would be of great help. Get some outside interests, even if it is taking a class on knitting.... I too, was alone after my husband died suddenly. My family wasnt there emotionally for me after the initial 7 weeks. I was disabled and ALONE. I too have given a lot as well in my lifetime, and thought...where is the help for me? I dont go to regular church, but I prayed for help, and then a knock on the door of the usual Mormons going door to door. For some reason I had a warm feeling about this one particular kid, so I let them in. My home was in disaster mode, my life was in disaster mode. They were there for me big time. They came in and cleaned, painted, moved furniture. I went to their church feeling obligated and met another girl who ended up at my doorstep with brownies, and came and cleared out my home to get new carpet put in. She said I needed the help and gave me no choice. (its hard to accept help like that sometimes) Yes, they pushed their religion on me, I tried to keep an open mind, but just couldnt go back on my own personal beliefs. I found that these people are so very caring and dont care if you convert or not. They are a really nice, warm bunch of people. I did find out later that that original kid I let in the door ended up being a cousin of mine. He and I shared the same great-great-great-great grandfather of all things! He and his partner are back home now from their mission, and we are still in touch. They ended up feeling and being family to me that I didnt know I had before. I am Lutheran, but they dont go door to door, so I believe that God sent me what I needed so desperately. Help is out there, you have to either go out and find it, or from my experience pray for it. Welcome to our forum "family". Here you are not alone, we are all in this together and if you need to vent, vent on us...we are here for you! AS Lori asked, what kind of help are you specifically looking for that would help you be able to get through this? So sorry about your mom. She is lucky to have you!
Big Welcome Hugs!
Blubear

 

[pink]

She doesn't have insurance. And we barely have any money coming in now. I am so scared we are going to lose this house. This house is all we have left. I am so angry at everything anymore. I just want to go out ONCE and smile and relax and I can't even do that. If I go anywhere, it's a quick errand and I have to take her with me...that in itself is a nightmare. I have to take the wheelchair(which I cannot lift) and wait for a man to help me get it out...then when we are done, wait for someone to stroll by to put it back. We have alot in common..yes, that is how I am feeling, like where is our help now? I mean, the phone NEVER rings...you'd think at least a neighbor would of came by on Christmas just for a hug...but nope, nothing. I'm so sorry I am so angry, forgive me please...but right now, I feel angry at the world...we need money help...and that's what makes me mad...we have brought in homeless people and turned their life around...we use to go and help homeless people every Christmas & Thanksgiving...I use to give people money all the time...I've bought cars for people...you name it, but no one is helping us...I just want this house loan modified, THAT is what would help...but they are such jerks and won't listen...they ask about a job and neither of us have one and tells us they won't modify...yet, in over 4 years of having this house, we have never missed a payment...also, my Moms medical bills are pilling up...the Als place said they had a lawyer, but I never heard anymore about it...I mean how can they expect her to pay when she has Als, a broken leg, no insurance, and out of work? Just thought the Als folks could help out...just thought, just for one day, someone from that place could call places to see how we can get in better shape...that would help...ever feel like you have called a hundred places and you only get the run around? Yeah. So anything from that place would help, even something that small....heard they have support groups and never heard anymore about that...I don't feel loved by them...I mean, I am very angry and I keep getting more and more angry the more people are ignore me...Just getting that stuff wiped clean would be a help(her med bills)...the financial mess is killing us both...the only money we have coming in is her social security and that is not enough...we can't lose this house...my grandmother gave us the money for it so we'd be ok....we can't sell because equity is gone...all we have left is this home...I feel like I am going to die. I have always been psychic and in touch with "the other side" and even before Mom got sick, I knew she was terminal...my dog who passed a couple years ago, same thing, even before symptoms and I KNOW that if we don't get help, I am going to die...no one can live with this much stress...I NEVER sleep anymore, like ever....we don't even have the money to buy her the vitamins and everything else so I can try to get her healthy...the phone only rings from so and so asking when we are going to send our payment in...try dealing with losing the only person you have in the world and then fear losing your home...and it's like people don;t care....sorry if I am going on and on about myself, but she's going to a better place and I am stuck "here"...I just need to find some way to where we can stabilize our home and such...we're in such bad shape, we had to get food from a church...THAT is how bad things are....I cry every night in such fear of being homeless, I am so scared...it's just too much stress at once...you are right, I do need to get out, but she's a fall risk...I can't and I don't have the money to go out anyway or anyone to go out with..I feel like I am in prison....feel so alone and so cold...I'd LOVE to go horseback riding, I love that, it's so free...but I can't leave her alone...how can I keep living like this? the only bright light in my life is late at night, I go into a state where I can leave my body(seriously)..I know it sounds nuts to many, but it really does happen..there's so much peace and love outside of this shell, words could never convey...I wonder though if my time is soon also...I've always known the future and I feel like I am going to go also...I can't lose her AND my home...my dream has been to have a house on land and turn it into an animal sanctuary(Mom's too) and I keep that close to my heart, but i fear that may never happen...ever since she became ill...our world has crumbled(we figured we'd hold on to this place long enough till it can sell then get our house on land)...I feel and see so many cold people who just turn a blind eye...it's crazy how people can be so cruel...I've noticed how EVERYONE I have ever known wants nothing to do with us...people are suppose to take care of one another...I loved your post...you made me feel love, really and thank you. I am glad I found this site. All I ask is one thing...to know how hurt and miserable I am...so if I ever sound pessimistic, for that, I am sorry...I loved your story, it was very beautiful...I hope my note made sense...I'm really tired...

 

[Danijela]

Sorry to hear about your situation. There seem to be several things going on here, both practical (care issues) and psychological (acceptance of diagnosis, the way you deal with it emotionally). I am 37 and my partner 43, with no family around us, and friends who have just started their own families and have busy lives. We got on with our lives by 1. accepting the diagnosis (both had counselling) and 2. being pragmatic about the disease (do we really want to feel like my parnter's life has ended before it has actually ended? Absolutely not!)

It is difficult not to feel isolated, because it is such a rare disease, and most people are unfamiliar with it. Maybe you can educate them, do something small about raising the awareness. This too, is a part of accepting it.

I don't believe that life owes us anything, it is what we make it to be. All the best, Dani

 

[brooksea]

Call the ALS Clinic social worker about that lawyer. They should work pro bono for ALS patients and are used to your type of situation I would think. We consulted with one when my husband could not get his disability from his company. They did it for free.

Another option is to contact Stu at the ALS Guardian Angels. He has helped others in your exact situation.

You also need to contact the ALS Association and ask that a patient rep be sent to your home to a asses you and your mom's situation. They should be able to provide resources to help.

You have to be a squeaky wheel or you will be left without help.

Also, your county probably has a mental health clinic that you should be able to go to for counseling for free or a minimum fee (sliding scale). It would be great if you could get an appointment to speak with someone as soon as possible. Surely you can go to a neighbor and ask them to sit with your mom for a bit while you go.

PS-

Did you say she was on Social Security? If so, she should be eligible for Medicare. Get the social worker at the clinic to definitely help you thru this maze.

 

[Blubear]

Hi Pink! The posts here have given you some really really good advice. It's all the same advice I would point you to. Again, look into the website ALS GUARDIAN ANGELS because they rock! And yes, Social Security can help you because mom qualifies for medicare and medicare should be able to provide someone to come into your home and give you a break! Ya need some counseling hun! I was lucky enough to find a counselor for 25.00 an hour, (I haven't actually paid her a dime in over a year, she just keeps saying ...uh...just pay me some other time) She too, has been a blessing. I think I would have been in the nut farm had I not gotten the help I needed. I was not functioning AT ALL! My memory was gone, my concentration, my will to even leave the house or take a shower was gone. Thats what happens when there is no support. But somewhere, somehow deep inside I knew I just couldnt keep living that way and I had to only depend on myself to get the help I needed. I always thought that karma would take care of me, and it turns out you still have to LOOK for things that end up turning into good karma returning back to you. I too, was ANGRY. First I was angry because I was sick, and then I was angry because I got well from what I thought was all on my own. I look back now and see all the helpers along the way, and they were there, I just couldn't see it at the time. I am now so very very grateful to have climbed out of the hole and to be able to see the blessings given me along the way. I so wish you lived closer so I could physically help you! But believe it or not, just by reaching this site you have found a blessing. Stu from the ALS Guardian Angels is a blessing...You just hang in there, help is on the way...ya just gotta go out and reach for it and NOT give up!
Big Hugs Pink!
Blubear

 

[BethU]

Pink, how old are you? Do you have any affiliations at all? School, church? You clearly need some help. If there is absolutely no one to turn to, call your mom's doctor and ask about social services for caregivers and family members. Las Vegas should have lots of resources available. It will be up to you to dig them out, but if there is nowhere else to turn, call your mom's doctor's office.

Hang in there.

 

[cukita99]

pink, reading ur post was like it was written by my son. if u want to u can email him. he n u have a lot in common. u just hang in there. he can use ur help too. he feels all alone n is angry at the world.

 

[brooksea]

Pink - you there? Please let us know how you are doing! We will help you if you are too overwhelmed to help yourself and your MOM! We will get things rolling for you - but you just have to give us something to help you with. We will do it. We will make contacts and get people to come help you. Please...update us on how you are doing. We can get the moderators to intervene and allow private messaging so we can get more info from you so we can get someone out to your house. Hope you will check back in with us. I feel for you.

This really sucks! I hate that there is not something in place (editing my thoughts here) to help people from the get-go negotiate the things that can and will go wrong when diagnosed with ALS. I'm not necessarily talking healthwise either.

 

[Katie C]

CJ.. was just reading your post and I agree. I kept asking as I was negotiating the disability maze.. isn't there someplace that just walks us through it. I think you and me and KayMarie need to take our frustrations and put them to good use by pooling our info and putting it into book form, then making it available through ALSA... whaddya think, you guys up for the challenge?

 

[brooksea]

Katie-

I would love to help anyone going thru this! I'm still in my PJ's right now, as I was allowed to sleep late! LOL Off to shower. I will PM you!