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kohl2kool

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Loved one DX
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Oregon
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Milwaukie
I am new to this forum...my husband Roger was diagnosed wit bulbar onset ALS in May of this year, with symptoms starting in late summer/fall of 2012. His disease is progressing quickly, he has already lost the ability to use both arms and hands, he can barely be understood anymore, and his legs get weaker every day. He chokes constantly, either from swallowing food or his own saliva. We have a huge support system, and I have help with meals, lawn work, housework, and general chores weekly. What I am lacking is support in knowing how to emotionally deal with this. I am so incredibly sad, and I cry daily. The support group in our area is not held when I can attend, and I would just like to chat with people who have been on the journey we are on as well. Any helpful hints, suggestions, and experience would be greatly appreciated. Thanks!
 
Please let me pass on these two incredibly valuable words of wisdom that our 'Princess Warrior' shared with me early on, and I finally took heed of, 'anti-depressants'. Even with all of the support I had received from the members here, as well as the people in my own little world, I could not have coped with this monster without them.

I have been taking them since the end of May, and they have saved my life and allowed me to continue to function. Ask your Dr. which ones are most suitable for you, as there are several choices, and I didn't want any side effects. Good luck!

Steve
 
K2K,
My first suggestion is to find ways that you are not incredibly sad and crying every day. That can only eat into the energy you need to deal with your husband's illness, however extensive your support system.
That could mean deeper conversations w/ friends and family, reconnecting with someone, counseling, an antidepressant, some outdoor alone time, resuming a hobby and/or anything else that will help you.
We are here for you 24/7...but closer to home, if you can't make the support group meetings (and I can't pretend to have ever been myself), maybe some of the local group members could meet with you outside the meetings? I understand that helps those who do.
Likewise, if anyone ever ventures into Seattle, look us up if you are so inclined.
 
I am the caregiver for my wife who is in the final stages of ALS.........( totally paralyzed , feeding peg, confined to bed )

What has gotten BOTH of us through this is our faith in Jesus Christ .

With out that, BOTH of us would be crying 24/7

Also, on the times I do feel depressed, I remind myself that my mood will have a big influence on my wife's mood. Hard for her to cope if the caregiver is crying and depressed.

I remind myself that it is HER that has a " death sentence " hanging over her head and I just want to make her final days on earth as comfortable for her as I can. In order to do that, I must STAY UUPBEAT for her sake if for no other reason.
 
I should have clarified that I don't cry all of the time, just seems that at least a few times daily I tear up. I don't cry in front of Roger, I try to keep that to myself or with others. If you didn't know me, you would not know how devastated I am either, I don't act that way, I just feel that way. I try to put on the happy face as much as I can.

The other thing I am dealing with is that Roger has not taken this well. I hear of many people finding joy, and living what is left of their lives to the fullest. That would not be Roger. Outdoorsman, sports fanatic, active guy, and bitter and angry all of the time at his condition. He seems to take his anger out on me, and I think that is part of the reason I am so sad. I work so hard every day to take care of him and love him, and I go to sleep every night feeling like a failure.

Anyway, enough of the pit pot. Thanks for you feedback, I do appreciate it.
 
I am sorry you are going through this. Everyone processes this in their own way and each find ways of coping. I am glad you have a good team on your side.

Could your husband be also suffering from FTD (frontotemporal dementia)? It affects the area of the brain that controls feelings and empathy. Anger, uncontrolled crying or laughing. You may have to look into it. There are meds to help for both of you. There is no shame is seeking meds for a little help. This is a tough thing to deal with. I wish you peace.
 
I am sorry you are going through this. Everyone processes this in their own way and each find ways of coping. I am glad you have a good team on your side.

Could your husband be also suffering from FTD (frontotemporal dementia)? It affects the area of the brain that controls feelings and empathy. Anger, uncontrolled crying or laughing. You may have to look into it. There are meds to help for both of you. There is no shame is seeking meds for a little help. This is a tough thing to deal with. I wish you peace.

Your last paragraph offered excellent advice. Even in the early stages of ALS , my wife could go from uncontrollable laughter that switched over to loud uncontrollable bawling.
She was prescribed medication that really works great to lesson the peaks and valleys.

I doubt I could still be her caregiver w/o that medication.
At the time , before medication, we could not even go out in public as that uncontrollable laughter/uncontrollable bawling could start at any time any place.
 
I am sorry you are going through this. Everyone processes this in their own way and each find ways of coping. I am glad you have a good team on your side.

Could your husband be also suffering from FTD (frontotemporal dementia)? It affects the area of the brain that controls feelings and empathy. Anger, uncontrolled crying or laughing. You may have to look into it. There are meds to help for both of you. There is no shame is seeking meds for a little help. This is a tough thing to deal with. I wish you peace.

Excellent advice in 2nd paragraph.
My wife's wild swings from uncontrollable laughter to loud, wailing, uncontrollable sobbing would have been impossible for me to deal with if not for medication to control it.
 
I will try for the 3rd time to have this NON offensive post go through !

Yes, if mood swings get too "wild", I also recommend medication.

Early on my wife would go from uncontrollable loud laughter to the point of tears and IMMEDIATELY swich over to loud , uncontrollable wailing and sobbing.

I doubt I could have mentally survived as her caregiver w/o medication.
 
Roger doesn't have mood swings or crying or laughing spells, he is just pissed that he has this disease and that he is dying. He misses hunting, fishing, playing football with our grown son, just living his life. I have tried the "live the life you have to the fullest" angle, but he isn't buying it.

I do appreciate all of your suggestions! Glad I posted!
 
My husband had been very similar. But has gotten more involved/interested in our lives in the last year. Not everyone is going to "live like they are dying". and that's ok. I accepted the way Tom chose to get thru this, however I can't say that I always agreed with it. It is hard when a PAL chooses "to go it alone" in silence with anger, depression, fear, regret or whatever emotions they may have. At the same time they leave their partner, the person that loves them the most (CAL) alone as well. And that is heartbreaking. He has to decide to reach out and you have to decide you will be there when he does. It may be a long time coming, but it is worth it. Hang in there and God Bless.
 
Is your husband on an anti-depressant!? There are three cognitive/psychological issues that seem to hit our PALS to some degree or other. First is full out FTD, which honestly does not sound like your issue. At least your husband acknowledges that he has the disease! The second is emotional lability, characterized by wild, uncontrollable bouts of laughing or crying inappropriately. Typically the person knows he is doing it but cannot do anything about it. There is specific medication available for this. The third is plain old garden variety anger/depression at being told you have a terminal illness that is going to stop your from doing all the things that you feel give your life meaning. In your husband's case, sports, hunting, etc. An anti-depressant isn't going to change the facts, but might help your husband deal with it rather than taking it out on you!
 
Hi, We all understand as you can see. Even Pals and Cals who may seem that they are upbeat and accepting are not like that all the time. I spent a lot of car rides weeping and screaming in anger, sadness and fear. I never let anyone see me crying especially my pals. I think it takes time to figure out what will help you and him get past that stage and move to a more productive one.

You can only suggest to him, because he will have to make his own decisions, but antidepressants can help both of you. My husband was (and still is) a very positive and upbeat person, but the illness made him angry and depressed. I asked him to just give it a try for a couple of months, and he noticed a positive improvement fairly quickly. When he started acting better, I felt better. I also got on some anti-depressants and I know I am a better caregiver for it. I tried therapy, but this forum helps so much also.

It is hard to talk to friends who don't really understand what you are going thru. most people can not even fathom what you and your husband face. it sounds like you have a lot of help so they do care--but you can always turn to us. we all care too.

take care,
 
Thank you all for your information and advice! Trust me, I am medicated. Roger is not, has not even agreed to talk about it thus far, but I will bring it up at our clinic appointment again on Thursday. I am also hoping that once his new bathroom and bedroom are done in his man cave that mobility won't be such an issue, and he will be happier in his chosen space. I have got everything ordered and it should be a fantastic place to be within a month.

We have an issue with extreme pain with Roger, and I think that brings him down too. He has a bad rotator cuff issue, but won't have surgery on it now that he has ALS...says "What's the point?", and his doctors cannot make him have surgery. He is a very uncomfortable man, and is on pain meds at night, but he wont' take enough to take the pain away because they make him groggy the next day. He's a tough nut to crack!

He fell again today, and although he was not hurt, his ego was, compounded by the fact that I could not get him up no matter how hard I tried....Dad to the rescue! He was here within minutes and we got him up and back in his recliner. I had to go away for a bit and cry, it scared me so badly.

All I can do is love him, make him as comfortable as possible, and try to keep my sanity in the process. I do appreciate talking to people who get it, this is a rough and rocky road.
 
Thank you all for your information and advice! Trust me, I am medicated. Roger is not, has not even agreed to talk about it thus far, but I will bring it up at our clinic appointment again on Thursday. I am also hoping that once his new bathroom and bedroom are done in his man cave that mobility won't be such an issue, and he will be happier in his chosen space. I have got everything ordered and it should be a fantastic place to be within a month.

We have an issue with extreme pain with Roger, and I think that brings him down too. He has a bad rotator cuff issue, but won't have surgery on it now that he has ALS...says "What's the point?", and his doctors cannot make him have surgery. He is a very uncomfortable man, and is on pain meds at night, but he wont' take enough to take the pain away because they make him groggy the next day. He's a tough nut to crack!

He fell again today, and although he was not hurt, his ego was, compounded by the fact that I could not get him up no matter how hard I tried....Dad to the rescue! He was here within minutes and we got him up and back in his recliner. I had to go away for a bit and cry, it scared me so badly.

All I can do is love him, make him as comfortable as possible, and try to keep my sanity in the process. I do appreciate talking to people who get it, this is a rough and rocky road.

Regarding rotator cuff...........I had two major rotator cuff surgeries.
Left shoulder 1991 at age 46
Right shoulder 1999 at age 54

In both cases I knew it had to be done when I was sleeping every night sitting up in a chair in the living room. Laying in bed was EXTREMELY painfull to the shoulder.
However, sleeping upright in a chair resulted in a sore back.

I hope your husband's rotator cuffs aren't that bad as I don't know what he will do when he gets bedridden, but can't lay in bed due to shoulder pain.

No easy solutions.
 
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