Feeling hopeless/helpless/useless

[whimsy_1971]

I have visited here in the past and have posted a couple of posts. Im glad to have a place that belongs to us, the caregivers. I have been having a lot of low days recently. My husband was diagnosed with ALS Oct 2007. I remember the nurse saying I hope the best, and Im thinking, " hope the best for what". I had no idea what we were facing.

My husband has rapidly progressed at least in my eyes. I remember him telling me in the Kohls Parking lot " nows the time to go if you want to go". I looked at him and said I'm not going any where.

This has been a daily struggle. I'm having such a difficult time adjusting. I can never get ahead, and alway seem to be falling two steps behind. My husand can no longer walk, feed himself and barley talks( i can still understand him but barley). He gets so frustrated and angry. We are still waiting for his wheelchair. I feel all alone at this and dont have much help. Im working so we can keep insurance (I work 3p-11p) and pay bills. I feel useless, I dont feel like I can take care of my husband the way he needs to be taken care of. Im scared to death. I get upset and think what the heck do I have to be upset for I have no right, Look at my husband he's the one that deserves to be upset.

Im very angry, Im so tired, I feel so helpless, and to be honest Im not sure how much more of this I can take. My husband had to use a bed side camode today, I cried when I emptied it. Telling myself "you know your husband would do this for you, why am I having such a difficult time" . I have no family they are all gone, except for an aint but we dont communicate. He has some family but one of his sisters live in Texas, the other lives close but she has to take care of their father. So my husband is dependant on me for everything, I work, and shamlessly ask myself if I can do this? (We have children too, but they are living w/ their other parent. )

Im am a wreck and wonder if one day I will no longer be able to do this. I want my husband back and I want to wake up from this nighmare, but this is one hell that we cant get out of. :(

[Diane Rae]

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 dx) 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

[checkmat2]

I hate all that is happening to my husband, me and my boys........this has been the most terrible thing we have ever had to face. I loosing my best friend. He is only 45 years old. What the heck.

Christina

[Icanmanz]

Hi whimsy! I am so sorry to hear this is happening to you and your dear husband. You sound like a very caring, and devoted wife. I can understand what you are going through. We must not forget that Als affects Pals differently, while Cals handle this drastic change in their lives differently as well. This is so bizarre! You are doing a great job, no doubt about that. As for your feelings, dear, you are not used to seeing your loved one in the condition he is in. It is only natural to hurt and cry for him. Crying it out helps, but don't do it in front of him. Go to a different room, and let it out. Lots of prayers help, too. Ask him if he would like for you to read the Bible for him. This might help. Don't push the Bible, ask him in a nice way. If he says no, say no more, assure him it's alright, and that you understand. I will be praying for you and your husband dear. Als is such a cruel disease. Oh, as for your children, how old are they, and how far do they live from you? God bless!

Irma

[crystalkk]

hi whimsy,

You are doing a great job, It is ok to feel the way you are feeling. You do not what one can endure until you are tested. I am still trying to figure out why bad things happen to good people. It is so hard to watch a loved one with such a horrible disease. It just doen't seem fair. How old are your children? I will be praying for you and your husband...

[whimsy_1971]

Our Children are 18, 17, 15. They live about 35 mints away. I worry about them so and how they are handling this. I have tried to be as honest as I could with them about this. It hurts me when I pick them up to come over and they ask if there has been any more changes w/ Dave. It just seems like he keeps progressing. they only come over every other weekend and they see so much change.

[hopingforthebest]

:)Dear Whimsy:

My heart cries for you! I am praying right now that you find some help with him.
Hopefully, he is on Hospice. If he is on Medicare, through the ALS diagnosis, Hospice is covered. They can be a big help and give you healthcare aid 5 days a week for 1-2 hrs.

I pray that you have neighbors, or co-worker or someone that can help you with house chores. One thing I have done is when someone asks how they can help me, I tell them.

It is healthy for you to vent on the forum. Just write and get it out!! My best crying is early in the morning in the shower. I give myself 10 minutes of what I call "water works" crying and when I come out, I need to lie down for 10 minutes to recover but feel better. I look forward to my cry time every day. Our husbands deserve our crying and grief over this horrible disease that plagues them and others.

I see others have mentioned their faith. Whimsy, if you ever want to call and talk to me, just private message me and I will provide my phone number to you and I will call you back. I have verizon unlimited land line and can call anyone in USA. It will take 5 minutes to help you get that little faith, the size of a mustard seed. You don't have to do a thing but just to ask, with a contrite heart, and it is yours. Without it, I would NEVER get through the day to day heartache of ALS.

I don't know you, but I will pray for you and hope to hear from you.

In Jesus name,

Patty

[jimercat]

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 dx 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

[anneinma]

Dear Whimsy,

While my dear husband had not progressed as far when he passed, we both worried about me feeling overhelmed and just what you describe. I didn't want my husband to think for a second that he was a burden on me but I know this was one of his concerns. He saw me trying to work and do all the things he used to do and it made him very sad. I said to him, "you did this for years so now it's my turn" but I know he felt awful.

It's normal to feel over whelmed. My ALS support network called me one day and asked what they could do and I was so stressed on that day I said, "is there anyone who can walk the dog?" It only takes one tiny thing to tip us over the edge. We have so much on our shoulders we should not be afraid to ask for help. It is not normal for me to ask for help but you have to be able to take care of YOU.

See if you are eligible for Hospice. They are very caring and will send volunteers to do whatever has to be done as well as nurses and social workers. They were very helpful to us. They also have support groups for the kids. Our daughter is 17 and had a very hard time with seeing what her Dad was going through. Though she would not accept counseling, i.e. "Kids Grieve Too", I know it is out there.

As was also suggested, ALS patients under a certain income are eligible for social security disability benefits.

I wish I lived closer so I could help you.

[CindyM]

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

[whimsy_1971]

jimercat,

He is registered w/ MDA and he goes to an ALS Clinic in Indianapolis. He will get medicare starting in July. He will not get SSI because he paid into a private pention, but will receive disability through that.

I work full time because I have to to support our family. I have to have insurance for me and our kids, and I have to pay child support still so I cant loose my job or we will loose everything. Ref to our state, IL they dont pay caregivers but they are looking into passing something in that effect, but just not yet. That would be nice though.

[whimsy_1971]

Patty, Crystal, Irma, and CJ

Thanks for your insite and positive comments. I can use all I can get. I just cant seem to get any where or know where to start so I do get upset and frustrated. It doesnt help that Im one of those PMS'ers either. That really effects my emotions.

Ref to the Hospice I didnt think he could get that unless he was towards the end of his life here in Illinois, but I will look into a home health aide. I think I finally have him talked into that, but that was only after I broke down in tears after trying to get him to his wheelchair and we almost fell. I couldnt bear to have fallen with him and he get injured. I told him I was really having a hard time doing everything and that I needed help. I have been trying to save his dignaty, but its his saftey were talking about now. He is 245 lbs and I'm 138, it's very difficult when he can no longer walk, nor has any upper body streingth We are learning all this togeather about transfers, on our own. We had a PT come to our home but he said we should probably look into a lift from somewhere, but hadnt heard anything further on that and he doesnt come any more. Maybe Im letting us slip through the cracks.

Is it normal for Visits to the ALS Clinic to be 3 or 4 months apart? It just seem like w/ his progression it should be sooner.

[anneinma]

Whimsy,

Regarding Hospice: It used to be that they did not get involved until a patient was thought to be close to passing but now they get involved earlier. Everyone was surprised when my husband's primary care doctor recommended hospice but they (at least here in Mass) now encourage families to get involved with them at an early stage. They have many support services including a home health aid that can alleviate some of your burdens. They will also supply many of the items you may need including some medication, medical supplies, etc. If you are paying for any of these things now Hospice will take over the payment. I suggest you call hospice and/or your doctor (doctor may have to contact them for you - not sure).

[whimsy_1971]

abneinma,

Thanks for the info I will have to look into that.

[andyvaughn]

Christy,
I understand how you are feeling. My husband was diagnosed 2/20/08, he has had a rapid progression of ALS also. In short order I have become the sold bread winner, care taker of him/house, etc... All of it is intensely overwhelming. One thing we absolutely have to do Christy is take care of ourselves, remembering if we are too sick to take care of our spouses, then what. If there are any ways for you to relieve your burdens, please do. There is an organization called extra hands for ALS, their service area is limited it seems, but you can email them, per their web site, about having services in your area. Also, I don't know if your area has this, but I have my groceries home delivered, order online, pick a delivery window, and voila, my groceries are in my kitchen for a 5 dollar service charge. Can you maybe get a walk in every day, or a massage now and then? Anything to take the stress away?
This disease is very creul, very painful. I really understand and know how you feel. We are selling our home, we have a 2 income overhead and now only one income. My husband does get SSDI, but as he was self employed all his life, it is a very small amount of money. We looked at what we can afford on my income yesterday, and the places are pretty much unliveable. We cried a good long cry together last night. We aren't materialistic, at least not anymore, but it is just hard to watch everything we worked for our whole lives crumble. It is hard to let go of our dreams. We used to take our motor home to Lake Mead every summer, keep our boat/wave runners there and drive out for long weekends, anyway, we realize my husband just can't do that anymore, so we decided we would plan a goodbye to lake mead trip, and are planning a houseboat trip, which will be much easier on him physically, in July. What breaks my heart about ALS is we don't know where he will be in July. You can't make plans with this dreaded disease. Of course our hearts are breaking..
But with all of it, the only advice I can offer is take time to take care of the caretaker... it is important for everyone that you be okay. Try very hard to stay here now, I try to stay out of the terror of tomorow, and put off what can be put off. Ask for help everywhere you can get it. Maybe your children would like to help out? Maybe they would feel good about doing some household chores, or sitting w/their step dad for a few hours while you get work done?
We have 2 kids also, 18 and 13, that are learning about stepping up to the plate and being team players. Maybe learning too much too young, but what choice do we have? And when ANYONE calls to ask what they can do, I tell them!! HAHA. I am no super woman, and can't do this alone. I also recognize things will get worse, and will need more help as the disease marches on...
The other thing that helps me is just knowing other people are doing this, and surviving. Keeping in touch with other caregivers who really know just how hard this is, and motivating each other when we are down helps a lot... you can PM me your number, we can be each others pick up if you want? We CAN do this... keep the faith.
Andrea - wife of Pals Jim

[whimsy_1971]

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.

[checkmat2]

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 dx) 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

[jimercat]

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.

SMILLHEISER@AOL.COM
ANGELS4ALS@AOL.COM
Office: (949)488-9894
Cell: (949)233-3045
THE ALS GUARDIAN ANGELS FOUNDATION

Hang tuff and we will hang with you my friend!

[checkmat2]

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 dx 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

[jimercat]

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...

[checkmat2]

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

[whimsy_1971]

CJ
I will contact our ALS Clinic and request to speak w/ the social worker. Thats a great idea, Thanks.

[jimercat]

I think this is your local ALSA:

http://www.alsa.org/community/default.cfm?CFID=6664139&CFTOKEN=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.

[checkmat2]

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/default.cfm?CFID=6664139&CFTOKEN=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.

[andyvaughn]

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.

[andyvaughn]

Christy, can't send you a private message either? :confused: Maybe you have to post some more before that is allowed?
Andrea

[checkmat2]

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.

[andyvaughn]

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

[CindyM]

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!

[whimsy_1971]

Christina,

Boy glad Im not the only one that feels that way. Run, Run like the wind as my husband use to say.

[jimercat]

Whatever our plight may be, I hope we all are able to celebrate this Memorial Day with some semblance of happiness with our families!!!

:mrgreen::mrgreen::mrgreen:

[checkmat2]

Wow lots of good stuff to think about, thank you.

Christina



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

[Coach's Wife]

I cannot emphasize enough about looking into your life insurance policy and getting the (up to) 50% advance. Most companies have this ("small print") clause but they will require documentation of a life-threatening/terminal disease. Using the money to pay off our house loan and do some remodeling was a "piece of sanity" for all of us.

Louie
Former CALS for husband, Jeff (Grumpy Old Coach): 7-5-2007

[checkmat2]

Hi Louie,

We have primerica for our life insurance, have had it for years. But our rep. said it has to be a letter from the doctor saying he only has so long to live in order to get some of our life insurance.....money to pay off cars would be nice or pay the house down and refiance would be even better. Help....do you think I should push the issue more with my rep.


Christina


I cannot emphasize enough about looking into your life insurance policy and getting the (up to) 50% advance. Most companies have this ("small print") clause but they will require documentation of a life-threatening/terminal disease. Using the money to pay off our house loan and do some remodeling was a "piece of sanity" for all of us.

Louie
Former CALS for husband, Jeff (Grumpy Old Coach): 7-5-2007

[checkmat2]

I feel like the world has came to an end and I don't know how to make things better.......I wish I could go back to Oct. last year and make things different.

Christina



Christina,

Boy glad Im not the only one that feels that way. Run, Run like the wind as my husband use to say.

[sharonca]

On the accelerated benefit on the life insurance. I got my letter from my GP last week and faxed it to my agent (State Farm Whole Life). I'm hoping it works - it states possibilty of less than a a year to live. If so I get 75% of my policy amount. I had to really work on getting the letter - explaining what I planned to use the money for and that without ability to modify my house, pay for things health ins won't pay for - my life expectancy would be less.

Sharonca

[whimsy_1971]

I feel like the world has came to an end and I don't know how to make things better.......I wish I could go back to Oct. last year and make things different.

Christina


one thing I have learned in this short time is to try and take one day at a time and only look one day forward, not next week or next month. That becomes overwhelming. But to be honest taking one day at a time is hard too.

Its to bad we are all so fare apart. Its to bad w/ cant have our own state to all live with our Pals and be there for one another to get all of us through this, but for now I guess this will just have to do.

[andyvaughn]

Christina
I got a letter from our doctor that said what she had done in testing, what Jim's current disabilities are, and that " due to the devastating nature of ALS life expectancy can be 1 year or less." She never said in the letter that it would be 1 year or less. My husband was diagnosed 2/20, his symptoms began Jan 08, and we got the 1/2 life insurance up front in about 5 days after faxing in the forms, no problem. I didn't have much life insurance on my husband, we had bought a fairly small policy because when we bought it he was a 48 year old smoker, now he is 51, life insurance in that age bracket, esp when smoking is expensive. But, I am so glad we bought it. I think you should be able to get the money, no problem. Our insurance didn't bat an eye.. I did also submit Jim's history and physical, along with a description of ALS from the ALSA web site. I hope you can get the money and it helps you guys!!

Christy, it would be nice to have our own little CALS/PALS city. Where no one would be made fun of because of their voice, or ignored due to their disability, and all the caregivers could take turns getting massages ... ahhhhhhhhhhh, to dream....but for now, I too am happy you guys are here...

Andrea - wife of Pals Jim

[checkmat2]

Yes, that is what my state as well....I email my husband's doctor at UCSF and ask her for her oppinion on the matter, I am hoping she will have some kind of insight for me.

Christina
Thanks for the help.

On the accelerated benefit on the life insurance. I got my letter from my GP last week and faxed it to my agent (State Farm Whole Life). I'm hoping it works - it states possibilty of less than a a year to live. If so I get 75% of my policy amount. I had to really work on getting the letter - explaining what I planned to use the money for and that without ability to modify my house, pay for things health ins won't pay for - my life expectancy would be less.

Sharonca

[checkmat2]

I email my husband doctor out at UCSF....and we will see where is goes from there.

Thank you
Christina

QUOTE=andyvaughn;44379]Christina
I got a letter from our doctor that said what she had done in testing, what Jim's current disabilities are, and that " due to the devastating nature of ALS life expectancy can be 1 year or less." She never said in the letter that it would be 1 year or less. My husband was diagnosed 2/20, his symptoms began Jan 08, and we got the 1/2 life insurance up front in about 5 days after faxing in the forms, no problem. I didn't have much life insurance on my husband, we had bought a fairly small policy because when we bought it he was a 48 year old smoker, now he is 51, life insurance in that age bracket, esp when smoking is expensive. But, I am so glad we bought it. I think you should be able to get the money, no problem. Our insurance didn't bat an eye.. I did also submit Jim's history and physical, along with a description of ALS from the ALSA web site. I hope you can get the money and it helps you guys!!

Christy, it would be nice to have our own little CALS/PALS city. Where no one would be made fun of because of their voice, or ignored due to their disability, and all the caregivers could take turns getting massages ... ahhhhhhhhhhh, to dream....but for now, I too am happy you guys are here...

Andrea - wife of Pals Jim[/QUOTE]

[checkmat2]

Hi Christy,


It would be very nice to be together, then I wouldn't have his family members talking behing my back at the fact I am overwhelmed and tried and besides right now, I hate the world......I just found out tonight from a family friend that his family is talking behind my back and think that I can't take care of him. Okay people lets trade places and then come talk to me. They all come over in and out all the time.....no one lends a hand with house work or yard or do they ever offers to cook a meal......no I shouldn't be upset, no not me. I doing the work of two parents, along with a 3200sq foot house, 6 acres.....and trying to get all of our finances together just in case. Living trust and such.

Christina



one thing I have learned in this short time is to try and take one day at a time and only look one day forward, not next week or next month. That becomes overwhelming. But to be honest taking one day at a time is hard too.

Its to bad we are all so fare apart. Its to bad w/ cant have our own state to all live with our Pals and be there for one another to get all of us through this, but for now I guess this will just have to do.

[CindyM]

Christine- if I had a steady stream of visitors I'd put them all to work. :-D I'd start out small, like having them prepare the PAL's meal or bring some milk and bread on theier way over. But before long they'd be doing his laundry or taking the kids for the afternoon. Any that were still willing to hang out after that, I'd hand them some cleaning or gardening gloves! :-D

Better yet, I'd start by asking the very next visitor to stop and get some take-out to feed everybody. You might want to keep these guys around. Someday you will need to teach a couple of them how to clean a vent or feed via a tube. Maybe you should ask hubby who he wants to do some of this.

[Coach's Wife]

Checkmat2 - Absolutely, I think you should follow up with your insurance company...you may want to even skip your agent because s/he may not even have any experience with this type of request. If you feel the need to supply your insurance company with reasons then all the reasons everyone has listed are precisely the reasons you should state in your request...and then some. Of course, it's sensible to pay off/down mortages, etc. but the insurance company cannot tell you what you can spend it on...you can get your advance and go on a vacation to Hawaii, if you want! It does not make any difference what you want the money for. You will have to supply the letter/documentation from your doctor...and then it should be a done deal. The way ALS works everything is a "guess-timate" - make your lives less stressful and apply for the money and put a plan in motion. Good luck.

Louie
Former CALS to husband, Jeff (Grumpy Old Coach): 7-5-2007

[jimercat]

I just found out tonight from a family friend that his family is talking behind my back and think that I can't take care of him.

Rather than viewing his family as the enemy (don't take me wrong, I've got the same issues with some able bodied in-laws too!), I would try to picture them as people that are just clueless as what to do about their poor brother, son, etc... I then would play the scene as follows:

Oh, "Jane," I just so surely wished that when you came over next you would bring some of "Joe's" favorite ______ for all of us! That would be ever so wonderful! And I know"Joe " would be so appreciative for your loving way! If only the other family members were as thoughtful as you!!!

I would do this to every single one of 'em...and change it up to include chores and errands. Let the party begin! Soon you will be seeing less and less of them. Only the ones truly interested in his well being will remain steadfast. (unless they are total jerks) and I would hope some of them really are interested in your husbands well being.

Well, just a thought!

[sharonca]

An idea... What about having a friend of yours be the lead person for a "Share the Care" group. All of his relatives will be invited to the meeting along with other friends and family. Then they can either sign up for something on the list or politely say no thank you. Then it is clear to everyone what you and your PALS need and what they have or have not decided to do to help. And you would not be the one asking - it would be the leader of the Group.

Sharonca

[kelly]

I totally agree about having family and friends help around the house. We joke that our house used to be called the Ragan Resort...now it is Ragan work camp. Amazingly all our neighbors pitched in and mulched our whole yard and pitched in for a lawn service for the summer. Thankful for small miracles everyday. Also, thought it was so interesting about the life insurance..would be a huge relief to reduce our mortgage. It is a small policy..but every little bit helps. for all the other caregivers....I finally have had to say yes to help. I hate it..but it really has reduced some of the stress that occurs on a daily basis. Fondly, Kelly

[checkmat2]

Great idea, I will use them.

christina:-D


Christine- if I had a steady stream of visitors I'd put them all to work. :-D I'd start out small, like having them prepare the PAL's meal or bring some milk and bread on theier way over. But before long they'd be doing his laundry or taking the kids for the afternoon. Any that were still willing to hang out after that, I'd hand them some cleaning or gardening gloves! :-D

Better yet, I'd start by asking the very next visitor to stop and get some take-out to feed everybody. You might want to keep these guys around. Someday you will need to teach a couple of them how to clean a vent or feed via a tube. Maybe you should ask hubby who he wants to do some of this.

[checkmat2]

Everyone has wonderful ideas and has helped me to feel so much better, today I had a better day.....My husband had to go to his Mother's for the day, because our electricty was out for the day and he is on oxygen 24/7.......so they all visited him over to her house...and this evening our good friend, who we have not seen in a while come over to visit but was willing to help out around the kitchen.......thank you all.

Christina

Rather than viewing his family as the enemy (don't take me wrong, I've got the same issues with some able bodied in-laws too!), I would try to picture them as people that are just clueless as what to do about their poor brother, son, etc... I then would play the scene as follows:

Oh, "Jane," I just so surely wished that when you came over next you would bring some of "Joe's" favorite ______ for all of us! That would be ever so wonderful! And I know"Joe " would be so appreciative for your loving way! If only the other family members were as thoughtful as you!!!

I would do this to every single one of 'em...and change it up to include chores and errands. Let the party begin! Soon you will be seeing less and less of them. Only the ones truly interested in his well being will remain steadfast. (unless they are total jerks) and I would hope some of them really are interested in your husbands well being.

Well, just a thought!

[checkmat2]

That is going to be my next project.........and then payoff some bills....maybe then I won't have to see my house.

Christina

Checkmat2 - Absolutely, I think you should follow up with your insurance company...you may want to even skip your agent because s/he may not even have any experience with this type of request. If you feel the need to supply your insurance company with reasons then all the reasons everyone has listed are precisely the reasons you should state in your request...and then some. Of course, it's sensible to pay off/down mortages, etc. but the insurance company cannot tell you what you can spend it on...you can get your advance and go on a vacation to Hawaii, if you want! It does not make any difference what you want the money for. You will have to supply the letter/documentation from your doctor...and then it should be a done deal. The way ALS works everything is a "guess-timate" - make your lives less stressful and apply for the money and put a plan in motion. Good luck.

Louie
Former CALS to husband, Jeff (Grumpy Old Coach): 7-5-2007

[nurburch]

Hi! CJ,Andrea, Christy, Christina,

Wow, what an eye opener.....I am so thankful for this wonderful forum to learn about
ways to help with the daily stress of ALS. I am so going to look into the ins idea. My
husband was DX in nov 06 and has steadily progessed to wc bound and no monments, but still can eat ok. He is on his bipap at nite, but I have noticed slight changes in his
breathing. It is good to know we are not alone in this terrible jouney that is ALS. My
husband too paid into his own pension and cannot get disability or ssi, but was appr.
for medicare. He was a deputy who is now dependant on me and our three kids (15,13,9). What a rough road for us all. I go to work at nite and cry to relieve the
stress. I thought that I was the only person who has issues with not accepting help....my friend has suggested hospice, but I as a nurse wasn't ready for that.
Are you all to trying to maintain some sense of reg routine for your kids? I have
the jobs of wife, mother, driver, worker, and friend to others. Iknow I need some
time for myself, but that is difficult to do. I too wish we could all get together to
talk, visit, but this will be wonderful. Are any of you trying the lithium with rilutek?
I am afraid to start that at this stage of progression. I have read where it increase
changes? Any thoughts would be appreicated. thank you once again for sharing
your lumps and bumps in the road. May you all recieve may blessings you deserve.

Sheryl wife of scottie.:)

[lisamk]

It is so upsetting reading these posts sometimes. I can't believe how unbelievably awful and unfair this disease is. I know we are only supposed to get what we can handle, but sometimes it is so overwhelming. Whimsy, I am so sorry for what you are going through and all of the other caregivers out there. There really aren't any words. I just wanted to tell you that the Hospice homecare was a God Send for my mother. I hope that you look into it and it helps you. We too, were not aware that hospice had a division that was for ongoing care rather than helping people through the final stages. They would come in 1 hour, 3 times a week to do various things. It wasn't so much WHAT they did as just having someone else there to relieve some of the duties and also the social aspect ended up being VERY good for my father. They were very good at understanding him because they are used to dealing with people with various ailments.

My father has ALS,. going on 10 years now so it was a slow progression, but he sounds to be at the same degree or alittle worse than your husband currently. He no longer to lift his arms so he must be fed each meal, can no longer go to the bathroom without assistance or walk so he is confined to a wheelchair. We can barely understand him and it is VERY difficult on my mother from an emotional and physical standpoint. I live less than a mile and try to help as much as possible, but she catches the brunt of it. He gets angry and frustrated very often. And it is getting to a point where she is not sure she can physically do it any longer. She is carrying a tremendous weight and feels terribly guilty. I guess no matter how much you do for someone, you feel it is never enough. Each step takes adjustment. I cried when I read about you crying while changing his bedside cammode. While I can't relate on the caregiver level, I can relate on watching someone you love deteriorate while feeling helpless. I can remember crying quietly everytime there was a noticable change. At first when he was walking but having difficulty, he had various falls requiring stitches , bruises, black eyes and broken ribs. Then when swallowing became and issue, he would choke all of the time. Seeing him struggle to lift an arm just to scratch an itch or blow his nose...all of those little things we all take for granted. Everytime some part of him is taken away, it's like a knife in my heart. Now all he can do is sit and it's a struggle for him to even move his fingers to operate the electric wheelchair. Its difficult enough watching something terrible happen to a loved one and it's even more difficult to have to be the sole caregiver to that person as well. It's an overwhelming duty and I hope you listen to the very excellent advice given and make sure you take care of YOU as well. Reach out and take hold of any help that is offered. When people offer to help, they usually really WANT to help, just don't know what to do so if you are lucky enough to have any friends or close relatives who say they want to help, give them something to do. They will feel good about doing it as well. God Bless - Lisa

[checkmat2]

I just wanted to share, I too worked for the Sheriff's Dept......I trained Newbees....I am currently trying to back, I currently work for the CA. court system, it does pay as well as the SO does, so if and when it is going to be my responsibility to pay all of the bill including the mortage, I want to not be stressed over money.

Christina
Hi Christy......and Andrea and CJ

Hi! CJ,Andrea, Christy, Christina,

Wow, what an eye opener.....I am so thankful for this wonderful forum to learn about
ways to help with the daily stress of ALS. I am so going to look into the ins idea. My
husband was DX in nov 06 and has steadily progessed to wc bound and no monments, but still can eat ok. He is on his bipap at nite, but I have noticed slight changes in his
breathing. It is good to know we are not alone in this terrible jouney that is ALS. My
husband too paid into his own pension and cannot get disability or ssi, but was appr.
for medicare. He was a deputy who is now dependant on me and our three kids (15,13,9). What a rough road for us all. I go to work at nite and cry to relieve the
stress. I thought that I was the only person who has issues with not accepting help....my friend has suggested hospice, but I as a nurse wasn't ready for that.
Are you all to trying to maintain some sense of reg routine for your kids? I have
the jobs of wife, mother, driver, worker, and friend to others. Iknow I need some
time for myself, but that is difficult to do. I too wish we could all get together to
talk, visit, but this will be wonderful. Are any of you trying the lithium with rilutek?
I am afraid to start that at this stage of progression. I have read where it increase
changes? Any thoughts would be appreicated. thank you once again for sharing
your lumps and bumps in the road. May you all recieve may blessings you deserve.

Sheryl wife of scottie.:)

[JACKIEMAX]

i think God led me to the forum this morn. i have not been on in a good while now. i have been bogged down with self pity, feeling helpless and hopeless, and feeling that i had no help from anyone, that none of mine or his family had a clue what we were going through, etc. etc. and then i come to the caregiver's sec. of this forum and read my thoughts over and over in this, esp. with whimsy's beginning feelings and the following answers from other caregivers.

my husband's drs told me months ago that he would only live 'maybe' a year, then they said 'a few months', then a 'few weeks', and now he is bedfast, cannot feed himself, has to wear diapers and use a urinal which he can barely hold now, and it seems i am constantly changing and cleaning him, putting water and prune juice in his peg tube, feeding him, etc etc.

yes, he'd do it for me, and he's not a burden. but i get soooo tired and am exhausted most of the time. his quality of life is nothing, and now, i guess i have to say, neither is mine. thank all of you for sharing your identical thoughts as they have helped me this morning.

jackiemax

[gagirl]

I fully believe that God has brought us all together on this forum. Even though I would not wish this monster disease on anyone, it is so comforting to know that there are people out there having the same emotions and experiences as I am. I mourn daily for the life that my husband and I have worked so hard to plan for that will never be. And if I try and think too far past then next day, I become an emotional wreck fearing what will happen to us through this journey and what will happen to me when I wake up alone one day. But I have a strong faith that God, friends and family will see me through this. And I know why God chose my husband to experience this. God wants the good ones, so I understand because I want him too. And I know that he will be healed the day God takes him. When ever you feel overwhelmed or down, dig deep and look for the positive in every situation. This is life and life is hard. Believe it or not, this is not pushiment, it's a journey and only God holds the master plan. He knows what we want, and unfortunatley it's not always what is in His plan so he will send what we need to do what we have to do.
Love, strength, and support to all you care givers like me.
Windy

[jimercat]

You hang in there woman!

Don't you get so down! Know that there are others thinking about ALL of us...

I wish I could come up there and give you a BIG HUG!!!

Reality knocks on the door one day and we have to answer it! But, we don't have to give ourselves over to it! We have to fight for everything and I mean everything!!!

Please let us know how you are doing and don't stay away from the forum, we need you girl!!!!!!!

[checkmat2]

Nice to hear from you.......Hi to all and Christy, Andrea, and CJ.....

Jackie,

This is a great place to start, sorry to hear about your husband....mine has ALS tooo...he is 45 years old and on bipap machine during the night and ventaltor during the day.....things this week seem to be kinda better......we just found out on May 7 regarding his condition.....it's hard but keep coming back to us and venting, it's a great place to be.

Christina CALS for George

i think God led me to the forum this morn. i have not been on in a good while now. i have been bogged down with self pity, feeling helpless and hopeless, and feeling that i had no help from anyone, that none of mine or his family had a clue what we were going through, etc. etc. and then i come to the caregiver's sec. of this forum and read my thoughts over and over in this, esp. with whimsy's beginning feelings and the following answers from other caregivers.

my husband's drs told me months ago that he would only live 'maybe' a year, then they said 'a few months', then a 'few weeks', and now he is bedfast, cannot feed himself, has to wear diapers and use a urinal which he can barely hold now, and it seems i am constantly changing and cleaning him, putting water and prune juice in his peg tube, feeding him, etc etc.

yes, he'd do it for me, and he's not a burden. but i get soooo tired and am exhausted most of the time. his quality of life is nothing, and now, i guess i have to say, neither is mine. thank all of you for sharing your identical thoughts as they have helped me this morning.

jackiemax

[beaner1]

Hello to Jackie and all other caregivers.
We can all relate to the "tired, exhausted and depressed" - I think every single one of us feels the same way - please know you're not alone! I try and read this forum at least once a week - I don't feel so alone afterwards. Hang in there Jackie (and everyone else!) - we're all here for you, and my thoughts and prayers go out to you.
Beaner

[whimsy_1971]

Just want to stop in and see how everyone's is doing.

It's been a rough few days here. Finally got my husband to the ALS Clinic in St. Louis.

I will say this there were some very nice people there. We meet this wonderful man named Alex. He helped me unload my husband and wheeled him into the Dr. Office for me, and then helped me get him back into the vehicle and then put the wheel chair in the back of our vehicle, and even put my bags in there too.

We have never had that much help. I have had people staring at us when we are trying to get into our vehicle instead of asking do u need anything. By the time we get him in we are both out of breath covered in sweet and almost in tears. It is amazing how someone like that can make your day go so much easier. I could not thank him enough. He responded to us in the kindest words ever. He said he does this in memory of his brother. I almost lost it. I just wanted to rap my arms around him and give him a big o hug.

When we visted the other branch there was no one there to help, no valet parking(which by the way was only 3 dollars, cant beat that). Heck I had to get David out then push him inside of building then go back to vehicle and then park it almost a block away then walk back and find Dave and then do that all over again when we were finished.

It is the little things that mean so much to us. It's to bad there not more of that out there with the kindness I felt that Alex had.

I hope your everyone's spriits are up today and I hope everyone is doing ok at leat for this day and hopefully for many more.
I hold all of you close to my heart. I am so glad to have you all here. :)

[jimercat]

You are right Christy! It is the little things that mean so much! And most of the time they come from people you barely know.

I'm glad you had a better experience at the new facility!

Wishing us all good thoughts!:mrgreen:

[checkmat2]

Hello, CJ, Christy, Andrea and Jackie......everyone else.

Well today my middle son graduated Middle school.....my husband did make it to the graduation....he even had his air off for most of the day....that was big.

Love ya all
Christina

[CindyM]

I am glad the graduation went well, Christina. So begins a new chapter in your family's life, High School. :-D Cindy

[checkmat2]

And tonight was the 8th grade dance.........my son is really shy and was so excited to go tonight......in away it's kinda sad tooo that life still goes on and on, even thought this terrible disease is in our life.......I wish it had never came knock at our door.


Christina

[kelly]

It is so amazing how we really learn to appreciate moments that bring "normalcy' to our life. Hang in there everyone!!! KR

[checkmat2]

Thank you to all.......

Christina

[ekm1979]

I find myself waking up many times through the night scared at the thought of losing my mom; I think, how will I take care of her, financiallym if something happens to my Dad. He is the sole financial provider for my mother. All I can do is take deep breaths. God will never give us anything that we cannot handle. I tell myself that.. not because I'm religious, I don't even go to church... but I know there is a God.. and he is not testing us, he hasn't stopped loving us; we are human beings with enough strength to give to the world. Sounds cheesy but the strength helps me.

[checkmat2]

this is such a terrible disease. I hate it.

Christina

[CindyM]

I gets very discouraging. I hope both of you get a little rest from your troubles today. Peace, Cindy

[carma]

I think the major problem is that people don't seem to know what to do; the obvious is too obvious and when dealing with our PALS they are sometimes insecure and scared. I'd love it if someone would wash the bathroom, do a load of laundry (piquets alone count for a load a day!) make a meal but it doesn't seem to register...I guess we all seem "on top of things".If they only knew how close we feel to implosion, keeping everything pent up because how selfish of us to feel sorry for ourselves... It is safe to say that when someone we love is sick ,we are all sick on some level. In my experience we waited to long to ask for help and people get comfortable with it. When we started trying to reach out she had already progressed to the point where her needs weren't blatantly obvious to anybody but my husband and myself. People would get nervous and would require our help anyway...sort of defeated the purpose,lol. And to make matters worse often our PALS don't want anyone else to help; they don't make it easy on those trying. It requires some patience on their part to allow people the chance to learn to read their expressions(what's left of them), but we must give others the opportunity....our health hangs in the balance.We won't be much use to anyone if we fall apart. I remember how much I needed a break after my daughter was born, stress and sleep deprivation, people cleaned my house, brought meals for the week, offered to help wherever they could but stayed away to allow us some privacy. Its funny how people know how to conduct themselves in certain situations while others are just too "tricky". The fact is I can't say I blame them... I "wing it" half the time!!!When you don't live there right along side them its hard for anyone to undertsand their needs and wants or ours. I will say this though whatever social workers,nurses,PABs, physiotherapists offer take them up on it!!! Sometimes we think that we wont or would never use or do certain things and when we realize that we do its too late or more complicated. There are waiting lists, some things must be custom- built, there is paper work,politics and just plain bullshit sometimes but there is a process to all these things, so get the ball rolling. If you change your mind thats fine but at least all options are available. And even when you do the paperwork there is still more paperwork...her work insurance kept sending us a form asking what skills she had that would still enable her to work. I felt like sending it back saying she could type 3 words a minute with one hand, what position is available? This after her neuro sent a letter stating she had an incurable,progressive disease that would eventually lead to her death.....Unbelievable!!!

[sschult]

Hi everyone. I know exactly how you feel about people not knowing what to do to help. I wish that I would have just told people what to do. I wish that I could go back and do things differently. It's too late now. So if you can, tell people who say "let me know if you need anygthing" exactly what you want them to do. Be specific. If your PAL doesn't like it, you're going to have to explain to them that it sucks but you can't do this alone and they need to understand that. Your PAL is suffering with this God Awful disease and so are you. I didn't realize that people can be so ignorant when it comes to knowing what to do for others who need help. Seems like it should be automatic, especially for family members. I also wish that I had forced my PAL's brother to help with him in more of a hands-on way. Hell he didn't even take time to visit more often. It was probably because he didn't know what to do. I should have trained him how to feed, bathe, transfer, etc. Honestly, I think that now he feels quilty about not helping his brother more. That is his problem to live with, but I could have made him do more hands-on work with his brother and he wouldn't have to feel guilty or helpless. I also understand about not being able to deal with making little trivial decisions. You just can't deal with anything else. You're not losing it, you're normal. It's called overload. You're just one person. When Alan went to live at the nursing home, they explained that it will take a whole staff of people, working three shifts a day to provide the level of care that he needs. We as caregivers shouldn't feel guilty about not being able to handle this alone. My best advice to everyone in this situation: solicite help and train people how to do the bathing, toileting, transfering, etc. Because it's not going to get any easier. You will need a break. I wish that I would have realized all of this several years ago.
You're all wonderful!
Shari

[CindyM]

Shari- your advice is perfect. Thanks for sharing!

[Jeanie]

Hi..I'm so sorry you are going through all this..and I do know how you are feeling..Is your husband a Veteran by any chance...the VA has been so wonderful to us..anything..and I mean anything we have needed, they have come through with..A wheelchair that wheels over the potty, another one that connects to a removeable frame in the bathtub so he can take a shower...for months i was giving him a bath while in his wheel chair...oh..he just got a new wheelchair with everything you can think on it..he has no use of his legs and minimum use of arms/hands..he is 230lbs and transfers use to be so stressful, but they also provided us with an electric (battery) lift..i dont know what we would do without all these aids. Also a hospital bed for when he may need it...
If your husband isnt a vet...ALSA has also been very helpful...I hope things get better for you, .. I still worry so much about what 's to come..but God showed me to just take very small looks into the future..so thats how i'm getting by day to day...
Good luck to you and your husband..God Bless

[fiddleplayer51]

I love y'all for your honesty. Your words speak volumes! One day this will be the past. Y'all that have kids at home and are having to downsize have such courage.

At least this ALS thing happened to my PALS and me after our kids were grown and gone, and just as my PALS was retiring. We already live in a little cottage that's paid for and I can be with my PALS all day.

(Of course ten years ago when I was working full time and mostly nights and was going through breast cancer and treatments, two of our kids were home and one was in college. That was my turn to feel utter fatigue and despair. I was the one carrying our insurance and was the main bread-winner. Also during that time my dad was dying of cancer and I was going 200 miles away to nurse him on my weekends off. Then one of our daughters was in a head-on collision and was on a vent in a hospital 200 miles away. When it rains, it pours!) Thank goodness this ALS thing didn't happen then.

You all really impress me as you juggle ALS, family responsibilities, jobs, care, and all the fatigue and discouragement that goes with it. Hang in there! Be strong! I can assure you that you'll make it and will one day look back on it all. It will just be a memory and the pain of it all will recede with time.
Jane