Completely Overwelmingly Sad

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Tamara Lee

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:sad:
My husband was diagnosis with ALS just over a year ago. Some days are good, A few more are just ok. With the remaiming days a blur of overwhelming sadness. I have Been seeing a therapist. However the therapist can not be with me 24-7.

ALS seems so isolating and very scary. Family members are full of talk but do not do the walk, which is bewildering and very hurtful

What I am wondering about is how all you caregivers rise above the abis and find a way to be content or even happy again :shock:

Tamara lee
 

scaredwifetx

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Hi Tamara, Steve was also diagnosed a little over a year ago. I thought my isolation and fear would be better by now. I still am very scared and rising above is hard. I am not sure we can be content right now but we can rise above. I had a very rough today and posted my feeling on this forum. Everyone came to my rescue and they will come to yours.

Happiness can be found on a day to day basis if you can put the monster to rest in your head. Try to enjoy moments with your husband and dedicate time ALS FREE.

Support is very important and you will get it here. Another very important thing to do is try your best to look at your husband and see all the love he has for you and you for him. Share some moments that gives you both time away from hurt.

I posted here tonight and was also scared. Answers came quickly and the support is wonderful. Hugs
 

affected

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Sorry to welcome you to the family Tamara.

I would say, in no particular order that the things that helped me cope most were:

  • seeing a counsellor regularly
  • antidepressants
  • peer support online

I was by no means happy every day!

But I bumbled along doing the best I could and had some firm goals in mind.

My main goal was to give Chris all the dignity I could and the highest level of care, and to ensure he would have a peaceful passing at home.

I believe I achieved those goals. It was the hardest thing I've ever done however, and I had a constant bone-deep aching sadness and grief.

The antidepressants however stopped me feeling like I was constantly screaming inside. I still had moments when that scream rose in me, but it was no longer constant.

My Chris passed away April 2014 and I have found a lot of joy in life, but I still feel grief at what he had to go through and my loss of him. But I have slowly healed, particularly in this past 6 months or so.

When we say take a day at a time, or even an hour at a time when a day is too much, we really mean it. The whole big picture can be overwhelming, so focus on small things you can achieve (even if barely).

I had the same - isolation (except for online support) and family who stayed away and had no clue. As Deb said, you will find a lot of support here, we do understand!
 

Nuts

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Tamara, welcome. Posting here is one way that many of us fight the isolation. We are a community of people who understand, and that is very powerful.

Acceptance is very difficult to achieve, but crucial if you are going to find peace and joy in your days. I had to put aside thoughts of what we'd lost and the future we will never have. I now live in the day as much as possible. How many smiles can we share, what joy can we give to each other, and what new ways can I discover to make him more comfortable.

This is our life now. We can accept and live it, or we can waste the time we have together by mourning it continuously. We are approaching three years in January, and I can now, finally, drive in the car by myself without crying. I can sing to the radio. You "just" have to let go of those old expectations and live the life we have.

Come here often. Join the conversation. Share your pain. It helps a great deal to let it out. Vent. We understand.

Big hugs,
Becky
Queen of Everything
 

Narrowminded

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Hi Tamara and welcome,

I'm sorry you have to be here, but it's one of the best places possible. I'm not sure what more I can add to what the others have already said. We are approaching 12 years since onset of symptoms and we just past 6 years with a trach/vent. I'd love to say it gets easier, and some things do, but truth is, I'm not sure it does. Somethings become more routine. My DH is at the point of being in bed 24/7/365. So, we don't have to deal with wheelchairs and lifts except for very rare occasions. So in that way, his bath (in the bed) and regular care are easier because they are a routine to be accomplished. That does help.

That said, dealing with feeling of loss and isolation don't change all that much. You accept them, you do what you can to make your days as bright as possible. You try and find things to watch on TV together. You talk. Now you have time for all those conversations that lifes other activites took away. That is something wonderful.

However, acceptance is the biggest thing you can do for yourself. Counseling which you are already doing is also helpful. For some, anti-depressents work well. But most of all coming here where "everyone knows your name" and gets exactly what your saying is probably the best of all. What you say here, people truly get. They have suggestions or just hugs. You can vent all you like. It has been the best thing for me. These people here are wonderful.

Hugs,

Sue
 

soonerwife

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Hi Tamara Lee! So sorry to find you here but welcome!

My PALS was dx'd almost a year ago. This has by far been the hardest year of my life. I was resistant to take antidepressants but they have helped. This forum helps me more than anything. This journey would no so much harder without it.

Take one day at a time and let us walk along beside you. Hugs!
 

Angeljo2

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There's a lot of love here, I don't post much but just know God has your Back.
 

ehd42

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Hi Tamara,

My heart goes out to you and I hear you loud and clear. I was diagnosed in 2009, I am in a power chair and on noninvasive respiratory support 24/7. At the beginning, we were also overwhelmed but within a few months, dealing with ALS became a team effort. I think the thing that helped us the most was learning a lot this disease and what to expect, so that we were prepared.

As our understanding and management options became clearer, our anxiety level diminished. It will take time to accept and understand what is happening and find ways to adjust and adapt so that both you and your husband can make the best of the situation. Taking psychotropic medications (e.g., clonazepam, Lexapro,etc) can help take the edge off.

The frequent use of Skype or FaceTime can allow you to keep in contact with friends and family and that helps prevent isolation. Call your husband's friends and invite them over to spend some time with him. If you can't go out, invite friends and family to your home by reaching out to them. If you belong to a religious organization, speak to your pastor or priest and asked to be counseled and perhaps they can ask members of their community to offer you support.

Contact your local ALS or MDA Association chapter and join their support group for advice and support. If possible to hire a caregiver from time to time to assist you and or give you some time off. Try to be proactive and ask family and friends for the specific help you need and to spend some time with you and your husband because you have nothing to lose and everything to gain.

During t quiet moments when nothing is going wrong, open a dialogue with your husband regarding his feelings and your feelings and let him know how important it is to pull together and I support each other during this very difficult time. You never know what will work until you try. If your ALS center has a social worker, discuss your situation and asked for help.

Learn to meditate because it can be a great stress reliever.

And finally, go online the ALS and MDA websites, they have a ton of information that can really help you a great deal. For very good caregiver handbook checked the following site:

https://www.mda.org/sites/default/files/publications/ALS_Caregiver's_Guide_P-531.pdf


Best wishes

Eliot
 
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affected

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You have had a heap of varied replies here already :)

What works really well is to take what will work for you out of the replies you get. Everyone is different, and that's the power of a place like this. Within all the various replies is usually the thing that really sits well with you.
 

Tracy500

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I agree family wants to talk and bark up ordered but won't do the dirty work.
 

Tamara Lee

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CALS
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Wow... I was a bit overwhelmed by all the kind and informative responses! I want to thank each and everyone of you for answering my cry for help. The wonderful response was just unexpected.
I know in my heart that I will survive and my life will go on but some days I just wish for time to stand still. Not indefinitely, although I chuckle as I write this....:lol: because of course I have absolutely no time line for how long time should stand still for me. Thank you once again for reaching out to me....it helped and I experienced a bit of peace

:cool: Tamara Lee
 

Kristy84slp

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I need Prozac, counseling and close friends/family. When we thought my dad had MG, my sister lived in Germany (she moved back when we found out it was ALS) and my mom, dad, sister and I started a group text. Now that my dad can't talk, texting has become his preferred method of communication. It's natural for all of us to check in multiple times a day, we send pics and video clips of all the weird/funny things that happen to us throughout the day. I also have a group text set up with some of my other friends, it's such an easy quick way to keep in touch
 

adrivtham

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Hi Tamara,
I am in the same boat, I get panic often specially at work. I see my husband disappearing in front of me little by little every day, and when I think of the future the fact that there is none makes me immensely sad.
I used to take some pills but they were giving me headaches...
All I can tell you is that I come here for information so I can see how other manages this awful situation. I cry every day. So I guess you are not alone
 

Nuts

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Adrivtham, please feel free to start a thread. You might be amazed at how much it helps to vent here. Sometimes just expressing it to people who understand can help, and we do understand.

Big hugs,
Becky
 

adrivtham

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Thank You, I will post later
 
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