Status
Not open for further replies.
Andrea,

I guess I dont know how to pm you or Im not able too. when I try to get info on members is states I dont have the authority yet.

Same for hopeingforthebest.
 
thankyou

I know one of the reasons why I am so angry, it is all of the people who come over all the time at any time and just sit and want to visit with him, we live in the country and before he became sick, no one but no one, came out to our house, now everyone is here.......and he is acting like horse butt.......and making me look like the bad guy.....I am angry at so much, loosing my cars, my rv, my house, my husband......having to look for another house. I just want some peace, not everone here........I kinda belong to a church, my husband does not have any religion........I am going crazy......


Christy,

I am sure you are doing a wonderful job! Better than you think. But it does sound like it is time to reach out for outside help. The ALSA should have some practical ideas for you and I think they have a booklet for care-givers on organizing help. I know of someone who had different friends come in everyday of the week to care for her husband while she was at work. Do you belong to a church who could help or neighbors who could check in on him? There are probably people in your life who want to help but don't know what to do. Make a list of things that people could help you with and then ask them to help. It will bless them as much as it will bless you. Remember, your husband has you and he does not have to go through this alone - that is huge!

I say the above knowing that one day, I will have to be thinking of the same kinds of things. My husband was diagnosed last March, and the reality of this disease is that the family needs to make small adjustments at first, and then larger adjustments as the disease progresses. I am trying to concentrate on the immediate future right now while he still has a fairly good quality of life. I want to make the most of everyday. We are planning a vacation next month and I want to have a wonderful time and enjoy ourselves. But I realize that the future will present us with many challenges and we will have to face them one after the other. I have a church family with many members who have told me that they are willing to do whatever they can to help, so I know I have people who I can call. My sister is going to come once a month, and she said she will do what ever I need. Just coming once a month is such a blessing to me. Last time she came she cleaned out my pantry and re-lined the shelves, she cleaned the kitchen floor and vacuumed the family room. It was wonderful! So ask a friend or family member to come just once a month to help with the house, it will make you feel better than you think.

The main thing that keeps me going is my Christian faith. I am holding on to a couple of scriptures in Isaiah 41 and 45 where God promises to strengthen and help me and that He will uphold me with the righteousness of His right hand. He also promises to go before me and level the mountains and breakdown the gates of bronze and cut through the bars of steel, and give me treasures of darkness. I have found these words to be so true - He has strengthen me and given me peace when all I could see (especially when we first got the diagnosed) were "mountains". It was like a down payment on what He will do for us in the future. When I first read "treasures of darkness" I thought that was strange, but when you tell your husband you love him, and it now means more than it did before, I believe that is what God means by treasures of darkness.

I will be praying for you.

Diane
 
Christy

Christy,

I am so very sorry to learn about the whole story.

I agree with the hospice idea that Anne suggested. No one can predict how long a PALS may last. Your doctor at the clinic should be able to help you out with this. Also, I would still call the social worker at clinic to at least let her know the situation you are in and she may have insight into what you can do help take more of the burden off you.

Regarding the appmts at clinic being 3 mos apart , it is the same here. But, I always get immediate response to any phone call or email, so I would hope it would be the same for y'all!

I don't know what kind of help Stu Millheiser can provide, but it's worth a shot to ask.

[email protected]
[email protected]
Office: (949)488-9894
Cell: (949)233-3045
THE ALS GUARDIAN ANGELS FOUNDATION

Hang tuff and we will hang with you my friend!
 
I wish it was that easy

He is self employed and never paid into social security......if it wasn't for me would not have any kind of insurance.....but thanks for reminding me about registering with MDA...I actually forgot. We live in California, I don't if they pay caregivers......I will have to look into it. I don't know the difference from UCSF where his ALS doctor is to ALS Clinic, we did go to a support group yesterday.

christina



Christy,

Have you registered with the ALSA and are you taking your husband to an ALS Clinic? Also, have you registered with the MDA? These agencies can provide help with info and support. The ALS Clinic will have a social worker that can sit down with you and assess your situation.

Has he applied for SS Disability and Medicare? With ALS diagnosed he will be automatically approved. From the sound of your post, it seems you are working to provide insurance coverage for the both of you. you shouldn't have to do this if he has paid into the SS system.

We all try to be superwoman/superman caregivers. But, I don't see how you can hold down a full time job and care for a PALS at the same time. You need help and fast!

I work part-time so I can earn money to buy insurance for myself and pay for my car. The rest of our living is made off of my husband's SSDI and Disability Ins from his job..

One other thought, I don't know if you live in a state that pays the spouse for caregiving - another option to look at. I wish every state had such a program, as cargiver spouses deserve to be paid, since they save the state a lot of money.

Please give us more input so we can perhaps help you better
 
Andrea

When my husband was to go on disability thru his company, we had the most difficult time getting his company to do the right thing and get things processed. We were absolutely left without income for many months, save my husband's retirement money. The stress was overwhelming. We spoke to a lawyer pro bono and he said we were going to have to make major lifestyle changes, as there was nothing in place for us to fall back on and we could do nothing to force his company to get the lead out. He also pointed out a lawsuit would further stress my husband and could possibly accelerate his disease.

We too had to sell things to just get by. Thank God we had not bought a new house like we were planning to do! Also my husband was going to be promoted and we were looking at a new vehicle that he would need for work. Thank God we didn't go thru with that either.

As it is, we live in an older neighborhood in a quaint house trying to keep our heads above water. Thus our house is also older and needs a lot of repairs. It seems you're damned if you do or damned if you don't!

Last month our car blew a head gasket. It would cost more to fix than it was worth! It just seems that the old saying is true for PALS and CALS sometimes: If I didn't have bad luck, I'd have no luck at all...
 
hello

how do you register with MDA and ALS......I'm losted

Christina


Hi Christy and Christina. You both articulate what many caregivers face. It can be overwhelming at times. I hope you are able to take advantage of some of the good advice our other CALS offered. Keep trying every agency you can think of-you deserve all the help you can get. nobody should have to go through this all alone! cordially, Cindy
 
CJ
I will contact our ALS Clinic and request to speak w/ the social worker. Thats a great idea, Thanks.
 
To register Christina

I think this is your local ALSA:

http://www.alsa.org/community/defau...=2e50d3f-0951114f-6e40-4a1b-8342-ad0848a6bc65

Contact them Christina, they will help you!

Go to this also:

http://www.alsa.org

MDA:

www.mda.org/

Christina, you need to check into Medical and all that. I'm not familiar with all of Cali's benefits, but I think you need help and it is there for you. You really need to get someone on board to help you find out about benefits. First step is ALSA and ALS Clinc social worker.

Good luck to you and let us know how it goes.

Andrea is from Calif maybe she has some words of wisdom she can help you with.
 
Thank you

You are going to be proud of me, I registered with ALSA.....got email back from them.
Thank you for your help and listening to me today. Even my husband was fraustrated with his family coming over all the time. We like our peace, tooo.

Christina


I think this is your local ALSA:

http://www.alsa.org/community/defau...=2e50d3f-0951114f-6e40-4a1b-8342-ad0848a6bc65

Contact them Christina, they will help you!

Go to this also:

http://www.alsa.org

MDA:

www.mda.org/

Christina, you need to check into Medical and all that. I'm not familiar with all of Cali's benefits, but I think you need help and it is there for you. You really need to get someone on board to help you find out about benefits. First step is ALSA and ALS Clinc social worker.

Good luck to you and let us know how it goes.

Andrea is from Calif maybe she has some words of wisdom she can help you with.
 
CJ, Christina and Christy

Christy, I think you may have to be on here a while to get access to PM, I will see if I can send you my phone number.
Christina, I relate. ... it is hard to let your stuff go... hard to let go of the dream. It sounds like you, me, CJ and Christy are in the same boat...We too are selling stuff off to stay afloat, including our dream home we bought 3 years ago. ... it sucks, all the way around.
As far as SSI or medi-cal, you have to be very poor to get either. However, there is healthy families. I don't know much about medicare, I don't know if you have to pay into the system to get it? When I say poor, I mean like no more than a couple of thousand dollars in assets. I don't know how they reasonably expect anyone to live and eat on what they provide either. We are VERY lucky, in that I am a Registered Nurse, I case manage from home. I don't even have a desk at my office, so caregiving expenses aren't mandatory for us, they may become wanted, but not yet. And I don't have to worry about my husband falling or choking while I am not home, I know that is a luxury few have... I count my blessings on that one every day. I would gladly work the midnight shift at a nursing home if my husband would just be well, but at least this is a workable situation.
CJ - thanks for sharing your journey, and yeah, sometimes bad luck is all we got, isn't it? It is what we have to work with though, and sometimes it is so bad that it just gets funny. Some nights we just cry through it. Like last night, we looked yesterday at a house in our price range, it is SO gross, I am not being dramatic when I tell you it is unliveable in it's current state....anyway, we alternated last night between laughing at our plight, going from a very fancy 3K sq ft ultra lush home to a house that the rats would probably snub their noses at .... to sobbing at the loss of all of it, my husband, his health, our lives...
It always helps me knowing I am not alone. I will probably never get the honor of knowing any of you face to face, but I sure am glad you are here for me in cyberspace.
Andrea - wife of Pals Jim.
 
Christy, can't send you a private message either? :confused: Maybe you have to post some more before that is allowed?
Andrea
 
Omg

Andrea,

I think you hit it on the nail for me, we tooo have our dream house, my husband is a painting contractor, so we had the house built 3 years ago on 6 acres, our boys ride on the property with their quads, our dogs love to run on it as far as they can go.

I too cry at night, every night, I cry myself to sleep. I don't want to see this happening to my husband. Since April 1st, its been down hill. I have never had any kind of tragedy in my life or my family. I just don't know how to handle this emotional or physically. I just want to run and run and run, and don't look back. Or it's all a dream and I am going to wake up and it's going to be over.

Christina




Christy, I think you may have to be on here a while to get access to PM, I will see if I can send you my phone number.
Christina, I relate. ... it is hard to let your stuff go... hard to let go of the dream. It sounds like you, me, CJ and Christy are in the same boat...We too are selling stuff off to stay afloat, including our dream home we bought 3 years ago. ... it sucks, all the way around.
As far as SSI or medi-cal, you have to be very poor to get either. However, there is healthy families. I don't know much about medicare, I don't know if you have to pay into the system to get it? When I say poor, I mean like no more than a couple of thousand dollars in assets. I don't know how they reasonably expect anyone to live and eat on what they provide either. We are VERY lucky, in that I am a Registered Nurse, I case manage from home. I don't even have a desk at my office, so caregiving expenses aren't mandatory for us, they may become wanted, but not yet. And I don't have to worry about my husband falling or choking while I am not home, I know that is a luxury few have... I count my blessings on that one every day. I would gladly work the midnight shift at a nursing home if my husband would just be well, but at least this is a workable situation.
CJ - thanks for sharing your journey, and yeah, sometimes bad luck is all we got, isn't it? It is what we have to work with though, and sometimes it is so bad that it just gets funny. Some nights we just cry through it. Like last night, we looked yesterday at a house in our price range, it is SO gross, I am not being dramatic when I tell you it is unliveable in it's current state....anyway, we alternated last night between laughing at our plight, going from a very fancy 3K sq ft ultra lush home to a house that the rats would probably snub their noses at .... to sobbing at the loss of all of it, my husband, his health, our lives...
It always helps me knowing I am not alone. I will probably never get the honor of knowing any of you face to face, but I sure am glad you are here for me in cyberspace.
Andrea - wife of Pals Jim.
 
Christina, I promise you aren't alone. My husband was a pool contractor, we already sold all our dirt bikes to help stay afloat, we had 10 of them, including 2 brand new hondas we bought in december :cry: -
If your husband has paid federal income tax, he should be eligible for SSDI, no? My husband paid federal and state taxes, he didn't pay into the California state disability tax, since that is voluntary, but he did pay federal social security. He only gets 676 a month, but that is better than nothing.
Can you sell your house and still buy something smaller? Or could you put a trailer or a modular home on your property and rent out the main house to cover the mortgage? Also, did you buy life insurance for your husband? If you did, you may have an accelerated benefit rider. We were able to get 1/2 of my husbands life insurance up front, which we will use to help remodel whatever we buy to make it accessable to him. He also bought himself a jeep, (we are selling his work truck to cover that cost, but in the meantime it is a fun little toy he can haul around in) - Can you sell your husbands business? we were able to sell some of my husbands business, it was enough to completely get us out of debt, so we have no car payments, credit card debt or any of that, thank goodness.
It is hard to lose that stuff, I know. It is hard on the kids too. My son was really sad when the last dirt bike sold, but what else can we do? I know it is hard on them, they are used to a pretty lavish life style, and the gravy train has come to a grinding halt. But, there are lots of fun things to do that are cheap, days at the park, picnics, beaches, lakes, etc... that are all wheelchair friendly too! Kids are pretty adaptable, and at this point it is about survival. You need the money to provide the basics for your family, a roof and food... kids are resiliant.
I know it is alot Christina, but something will work out. Really think about the modular home deal, or trailer on your property. It just may work, if your property is zoned for 2 dwellings? I am wishing you the best, and know that you aren't alone... there are families all over this country dealing with it, and going thru it just like us. The other thing I always remember is that even if I won the lottery tomorrow, the only thing that would be different is our home... I mean, it can't buy our husbands health back, and it is just money, at the end of the day, what does it really matter? I know that when you are broke, as we all are, that is easier said than done, but money comes and goes, our time with our spouses is short now... we have to try to enjoy what we have while it is here....one day at a time
Andrea - wife of Pals Jim
 
Andrea- your post could not have come at a better time for me. All weekend I've been reminding myself that wants and desires usually gravitate towards material things. Sometimes it is hard for me to keep these wants in check. But there are many low-cost ways to enjoy the time we have together. At the end of the day, being together is all that counts. thanks for reminding me!
 
Christina,

Boy glad Im not the only one that feels that way. Run, Run like the wind as my husband use to say.
 
Status
Not open for further replies.
Back
Top