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whimsy_1971

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Illinois
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Noble
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

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May 7, 2008
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6
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CALS
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US
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Ca
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Claremont
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
 

checkmat2

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Joined
May 21, 2008
Messages
36
Reason
Loved one DX
Diagnosis
05/2008
Country
US
State
CA
City
Royal Oaks
I am so glad I am not alone

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

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
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

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Sep 11, 2007
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Learn about ALS
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US
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pennsylvania
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philadelphia
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

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Messages
77
Country
US
State
Illinois
City
Noble
Kids

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

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
:)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
 

brooksea

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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
 
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anneinma

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Joined
Aug 6, 2007
Messages
66
Reason
PALS
Country
US
State
MA
City
barnstable
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

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Sep 17, 2006
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3,543
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Learn about ALS
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US
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New England
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Anytown
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

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Jan 13, 2008
Messages
77
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US
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Illinois
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Noble
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

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Jan 13, 2008
Messages
77
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US
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Illinois
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Noble
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

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Aug 6, 2007
Messages
66
Reason
PALS
Country
US
State
MA
City
barnstable
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

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Jan 13, 2008
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77
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US
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Illinois
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Noble
abneinma,

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

andyvaughn

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Joined
Feb 12, 2008
Messages
138
Reason
CALS
Country
US
State
ca
City
thousand oaks
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
 
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