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scaredwifetx

Very helpful member
Forum Supporter
Joined
Jul 25, 2015
Messages
1,606
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
First all I would like to thank everyone on this forum. You are all trying to help cope with this terrible disease. My husband was diagnosed last week and we are both terrified. We don't have family to help us through this ordeal. I have herniated disks and cannot lift him when the time comes. I am also the breadwinner and carry his insurance. He had to quit his job last week as he has fell several times and work from his job in cabinet installation so no benefits from his job.

He is very worried about how I will take care of him and if insurance will cover full time care. I have to continue to work so we do not lose insurance and our home. My mother also lives with us and my husband helps me with her.

I came home last night and he was on the computer searching drug overdoses. I was very upset and he said he did not want me to lose the house and injure myself when he is going to die anyways and it would all be for nothing.

If anyone can let us know how to cope with this disease, has information on how much help is covered by insurance, how long it takes to get on disability, how hard it is to set up the home and how we can get help I would appreciate it. I want to give him hope and rest both our minds. He goes to the ALS Neurologist at Texas Neurology in Dallas on Monday. He already has weakness in three limbs, walking very badly and having problems with both hands so afraid he is advancing rapidly. This scares us because we have very little time to prepare. Hope is needed and we need help!
 
ScaredWife,

No need for suicide. There is plenty of support. Call up Social Security THIS MINUTE and apply over the phone for disability. ALS is fast-tracked under the TERI program for rapidly terminal illnesses. Medicare quickly follows.

As for lifting, you'll get an electric Hoyer Lift. My 13-year-old girl could easily lift her mom and take her to the bathroom or shower.

Get a doctor to write a letter confirming the diagnosis. We found that helpful.

It is true that, if he is indeed a fast progresser, the caretaking job gets exhausting very quickly. But I managed. So you can, too.

This community will help you immeasurably.

Did he serve in the military?

--Mike
 
I am very sorry that you need to be here but you are most welcome. As would your husband be should he care to join us.
I hope you have started to look at the sticky posts as they may give you answers to many things. Ssdi and medicare will start after a 5 month waiting period from when he stopped work. You did not mention that he was a vet. There are many benefits if so.
The time immediately following diagnosis is very difficult and I think we all have a tendency to jump to the end in our minds that we will almost instantly be paralyzed and helpless which is not the case unless diagnosed very late or progressing very fast. A lot of us have had some happy and interesting experiences since diagnosis. There are quite a few threads here with stories and pictures of adventures PALS have had.
Suicide following diagnosis is not that unheard of Try to keep him talking
An exit strategy being prepared for possible later use is even more common
Hopefully your clinic has a good social worker who will help you identify resources. Also contact your ALSA and MDA
 
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Hi Mike,

No he did not serv. A condition when he was a kid with his spine kept him from serving as an adult. We are applying online for disability but heard there was five month waiting period. He is very worried as well as myself about my being able to take care of him and work. The cost o having someone here to take care of him will be very high. I guess we will have to take one day at a time and hope we can get help with the modifications needed for our house without going broke. Feeling helpless an not sure where to begin.
 
Thanks Nikki. So sorry to hear about you and your family. He did not serve. You said to read the sticky posts. What are they and where can I find them? I am willing to do anything I can to get us through this. It is so terrifying. We are worried about getting the house ready, my keeping my job and having the money to make it though this. I froze today in the store for over thirty minutes in one trying to decide what protein drink to get him as he has lot so much weight. He is very independent man who has taken care of thee house and my mother as I travel for a living.
That will also need to change so at this moment we are even worried about me losing my job. Talking to others and getting advice will help.
 
They are at the top of the general discussion subforum. The first subforum on the main page ( where you posted originally before I moved this to newly diagnosed)
 
Texas,

When you are both terrified, it is hard to make good decisions but risky to make quick ones. Talk to him even when he doesn't talk back, about being the same people you were, and that the future is not yet written. No one's ever posted here, that I'm aware, about losing their home as a couple -- and you might note that losing him when there is still good life to live would hurt a lot more than any injury, which you will be careful to avoid anyway.

The stickies are here.

Obviously, something's going to have to change. I would talk with a social worker at your clinic, hospital and/or home health agency (your husband is likely eligible through your insurance for home health OT/PT to set up exercise, equipment, home adaptation, but your doc has to order it). ASAP about long-term options relative to his mom. Others have talked about Medicare. Did he have a disability policy at his job?

If you use the search box, you can find previous posts about how to find part- to full-time caregivers. If you are near a college or trade school, that is a place to start, as are friends who may know/be people looking for work. They do not need to be nurses, and may be students.

You might also think about options for a different role at work, or even changing employers if necessary, so you're not under the gun later on. If there is a role at your company that you can play in town, you could start strategizing the talk w/ your boss.

This news is still sinking in, and it's very hard news to take. After you two have internalized it, it's time to touch base with the financial, social, personal networks that you both have, and you may be surprised at what comes of that. And of course everyone who can, here, will support you both.

Best,
Laurie
 
ScaredWifeTx, you've gotten some good advise so far, and I wanted to add one more thought.

Don't forget about taking care of YOU and the survivors. That will make you husband feel less stress, too, if he knows you're working on your future. Make sure you have access to all bank and retirement accounts.

I found it easier and less stressful if I made the house ready for the next stage of the disease. IF, indeed, his symptoms progress quickly, it's best to be ready in advance.

Most of all, realize that this disease is manageable. We've all done it, and you're always welcome to ask questions or advice. My wife lived with ALS rather happily for the most part, and died very peacefully in the end. It's doable.
 
Scared, there is no way around the initial shock- one day at a time.
Would recommend Boost Plus for the weight. My husband lived SOLELY on it for over a year. The weekend fliers in the newspaper often have coupons to help with the cost. Have your neighbors save their coupons for you.
Every case is different - try not to worry because you can't foresee what is coming. My husband never got to the point of needing to be lifted. - so again, don't worry about what MAY happen.
One thought- if he is losing weight, they will recommend a feeding tube. Don't wait too long. This can help the quality of his life if he isn't struggling to eat and we know keeping a stable weight is important.
You are not alone, my dear. Ask us any questions you want- someone here always has an answer.
In the meantime, try to find the joys in each day- that's all any of us have really. Hugs. Donna
 
Thanks to everyone for the wonderful replies. Today is the first day in over a week that I have not had a meltdown. I went to the store and bought the Boost and he had his first one today. I started taking an inventory of the house and what needs to be done. Our doors are only 32 inches wide so that will be a problem and we will need to put in a walk in shower.

We do go for our first visit to the ALS Neurology in Dallas tomorrow and I made a list of questions and concerns and hope to get the doctor to prescribe what we will need. I am not sure at this point what all that means. We will sign up for disability tomorrow and get that started.

Financials are big issue with us. In the past two years we have been wiped out of a lot of our savings due to his prostate cancer, moving my mom out of her home in Florida and my two arm surgeries. I do work full time and cover him on my insurance. One question asked was if he had any benefits from his job and the answer is no. He was a cabinet maker and they offered no benefits. We are going to have to find the cheapest route possible to make the home reedy and find help.

One at a time is my new motto and if I am able to show my husband strength and that we can handle this, maybe he will be a little more positive. Right now, he is not in a good frame of mind and I so want to try to enjoy some of the time we have left together. It needs without his constant worrying about me and how we are going to handle this.

You are all so wonderful and the support means a lot to me. I hate this disease and it has struck or touched a lot of amazing people. You are all in my prayers.
 
Scared, actually most wheelchairs measure 25 inches so you could get by with 32 (unless he makes wood fly as does Gooseberry's hubby! ).
There is a thread on alternatives to the walk In shower. Check it out,as there maybe a cheaper and still good way to solve this.
There are many resources for items he needs - loaner closets through ALS, ramps through Habitat for Humanity,etc. granted, as a working gal, caretaker, you will be busy,busy- but let you fingers do the walking! Google resources and then call. Your ALS clinic should also have a list of resources for things you need. Yep, you will be a full time secretary,but your hubby will be reaffirmed in your love for him. Donna
 
Hi scaredwifetx, Sorry to welcome you, but welcome.

On the larger scale of things, I can't offer any better advice than what's been said by other forum members above. And not being from the States, I know absolutely nothing about the system and how it works.

That being said, I can relate to both you and your husband's fear and feelings. I was diagnosed twice with PMA, a variant of ALS. I am in the process of having a third opinion. And I still, blissfully, hope for a better option. But realistically, I know that's unlikely.. No matter what happens, something is slowly killing me. The name at this stage is almost irrelevant.

When I was first diagnosed, I worried constantly about my (then) husband. I thought of suicide, I thought of the financial drain being ill in a country with strictly private health care and absolutely no MND support. I'm now 47. He's about to turn 55. I didn't want him spending his retirement nest egg caring for a woman who was inevitably not going to be around for any sort of retirement.

Then he abruptly left our marriage and I rushed back to my home country. But once I arrived here, I realized because I had been gone for so long, I no longer qualified for support or disability etc., I have no support here at all.

Once again, the thoughts of suicide rushed to mind. The fear of still being alive and not having the physical ability to act on any decisions later on, made those thoughts larger than life.

I don't feel that way any longer. If anything I find I now feel the complete opposite. Yes, I have bad days. I have genuinely low days. I still have doubts and fears. Still, for the most part, I am learning to actually live and love life again. Particularly, those tiny little day-to-day moments that previously would have been lost to me, are now amazing. Microscopic -- previously insignificant moment -- are now in techno colour.

Yours and your husband's thoughts have to be addressed, but in my opinion they are initially normal thoughts. And financial fears? Trust me they are at the forefront of my mind every single day. For you, being the sole provider, no doubt those pressures and fears must seem insurmountable. If you didn't feel overwhelmed, I'd be concerned.

Stick with it here at this forum. Take the advice of experienced PALS and CALS. Their knowledge is amazing. See if your husband has an interest in joining the forum.

Based on my limited experience, this is the only sound advice I can offer.

This forum has been a lifesaver. Literally. I call it my sanity saver.

I'm sorry you and your husband are going through this hell.

Try and find one reason to smile every day, no matter how difficult that task might seem. Doing that has helped me significantly.

I wish I had some profound insight to offer. I don't.

But I am sending you hugs.

Cee
 
I'm so sorry to welcome you here as well.

Truly you are both in the real shock/horror/OMG stage and everything you are feeling, we have all been through. I'm so glad to see that already you have stepped back a little, taken some deep breaths and slowed the overwhelming feelings just a little.

I'm in Australia and just cannot follow the health system you have there and can't comment on how to manage that side of things. But I know the financial fear. I was caring for Chris, trying to run a very full time business and look after a 14 acre property. I work a lot from home, and it was really hard but I juggled and juggled and was constantly amazed at how well the world went on regardless of how much I managed in any one day.

Please do look for the cheapest and easiest ways to overcome home mods. Always do any changes with the most disability in mind as you don't want to do two lots of mods because one lot just don't last long enough. We can't tell anything about how fast his progression will be, but trying to stay a step ahead is really important.

What is going on with you mum? You said you are both looking her - what kind of help does she need and is it increasing?

So awful, but I have to say that you may need to really honestly address the reality of whether you can care for two people in the home. Some of us have tried, but it's really not a great option.

I've been amazed at some of the solutions people here have come up with - boy scout projects, church group projects, community fundraising, rosters online for friends to help.

Try to keeping stepping back a little, talk to a social worker, and break down your needs into smaller chunks, prioritise them and attack just one at a time.

I had no money for home mods so Chris was only able to use part of the house. I converted the lounge room into his own hospital room, so he was always in the centre of everything and it was big enough to take hospital bed, electric recliner, pwc, electric hoist, and still the TV remained (even if everything else was taken out). I found a really simple solution to showering that prevented me having to remodel the bathroom which would have been huge.

Then, I have to say, this family here were one of the key factors for me surviving with whatever sanity I do possess (I don't really want to be 'sane' anyway). Half the time, all you need is to be understood and to know you are doing your best.

I hope your husband can come to a better place in himself. As a CALS I can't fully understand what a PALS must go through in digesting this diagnosis. I can imagine, but I can't say I know it. I would also encourage him to join here - talking to the amazing PALS as they go through the same struggles would be a great help for him.
 
Thanks so much for all the replies. This forum has honestly given me hope. Cee and Affected, your story and words were truly inspirational. Cheerleader, I added your suggestions to my ever growing list. I will do whatever I can to support and care for Steve but he is still not coping. Its not pity thing with him and is actually quite the opposite. He feels no need to make the changes to our house or spend what we have left in our savings to prolong his time here. i tried to talk him in to getting on the forum but he is not ready. I am bullheaded so read the posts to him and he knows better to ignore me when I am talking. lol

i hope he decides soon to help me with decisions and things we need to do as this is his disease and it will not wait for him to participate. This will all be very tough on me if he does not.

All advise is truly appreciated and is very important to me as I am so scared we will not be read to handle his decline if we don't face it head on together.

Prayers for all!
 
scaredwifetx, There is no doubt both you and your husband are outstanding and loving people. You only needed to write a few paragraphs to make that clear.

I have seen a lot of joy in my life. And I have in the past, travelled the world through work and have witnessed some of the worst suffering and atrocities imaginable.

The one thought I gleaned from those experiences and that has carried me through the years is: "It's quality not quantity.'

I've known many people who have lived well into their 90s and never experienced relationships, love and life.

So, as trite as this may seem, both of you just keep living and loving.

And as I said before, reach out to the other CALS and PALS. Their range of knowledge and willingness to share is simply priceless.

Sending you both huge hugs.
 
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