So Lost

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jwife

Distinguished member
Joined
Jul 10, 2010
Messages
163
Diagnosis
05/2009
Country
US
State
Alabama
City
Lincoln
I just need to vent. I am really at a loss. I am doing okay with the physical demands of taking care of my husband, but the emotional demands have changed me so much that I no longer recognize the person I used to be. I do not think I will ever be the same. I can't see being happy again in my lifetime. I recognize the depression that goes along with caring for a dying mate, but I feel that it goes so much deeper than that. My very core has been shaken and will not recover. I hate this disease and what it has done to my marriage. Only here do others really understand what this is like. Thanks for listening.
 
I am a PALS and you have given substance to my greatest fear. I worry about my husband. I'm so sorry you feel shattered. Do you have help? Do you have a church? Do you go to any of the ALS Support Groups? Here in Northern Colorado they have a couple groups specifically for CALS. Lets figure out how you can have some peace of mind.

How advanced is your husband in this journey?

Much affection,
Marta
 
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where are you located at in Ala? I live in Valley, which is close to Auburn. Are you taking anything for the depression?
 
Took the words right outta my head.
 
I avoid the church. Lots of heads turning and "we'll pray for you" but no substantial assistance to relieve our more earthly burdens.

My wife has rapidly progressing limb-onset ALS since Dec 31, 2010 and was wheelchair-bound within 60 days. Now I see nearly useless hand spasticity, cannot move at all to re-position herself in bed. There's easy googling, easy tearful blubbering, and occasionally incoherent speech. She's choking on her own saliva nearly daily. I doubt she'll be with us much longer.

I haven't cried once, yet. Maybe as a military man I've learned to compartmentalize my feelings, keeping my mind on the "mission" of providing for her safety, comfort, and happiness. Maybe we have fewer stressors or more hope since the VA is providing excellent benefits.

I firmly believe in better living through chemistry. There's no need to suffer emotionally so much that you become a mental basket-case. Take the anti-depressants. From my perspective, it helps me continue on with my responsibilities, and so comforts me that I'm doing all I can to provide my wife with the happiness, comfort and safety she needs.
 
You need more help. Being a spouse and a caregiver is really demanding. From experience, in that situation we have a tendency to being more and more a caregiver and less and less a spouse with a really bad impact on moral. Being the principal caregiver, you are the frontline and you take every hit one after an other, this is exhausting. With more help, you will have time to just be with your husband and you will see happiness is still possible. But, to find moments of happiness, you need to have time for you and your husband, without any medical task to do, just to be together. During that time, let someone else take the hits, your nurse dress stays in the closet…
 
I know exactly how you feel. Exactly. I have friends, neighbors, church, support groups, family - you name it. I'm still shattered.
 
I am sorry. Its very hard on you. We took turns with my sister. Not easy at all. My heart goes out to you. Just dont feel guilty and ask family or friends for a few hours break. It may do wonders for you. Find something you enjoy. I find with this disease you as a caregiver will feel guilty of your mobility and freedom because they no longer have them and we have hope for future they do not. I hate ALS. You know the saying? If mama aint happy nobody is! Take 5. How far progressed is your husband. Doe he have Bulbar onset? My sister could not speak so it frustrated her more and I felt helpless at times. I couldnt help her like I wanted. Talk to other caregivers. A support group is wonderful thing. Hugs, Doris
 
You need to talk to your own doctor or even his about your depression. You also need a break. Talk to your local ALSA about recommendations for respite care. and Mommagoose is right.. see if you can find a support group.
 
Thanks to everyone for your ideas and suggestions. It isn't antidepressants, more help, group support or respite care that I need. I have antidepressants - have talked to my doctor and his. It is my husband that I need back. He has the dementia that sometimes happens with ALS and it is him that I have lost. Caring for him is much like taking care of a 2 year old. His thoughts revolve around him and his care. There is no more partnership. There is no more sharing and even small talk confuses him at times. That is what I miss so, and there is no cure for that loss.
Marta, I am sorry if my posting upset you. It isn't a personal attach against any PAL or against my husband. I do not believe that most CALs feel this way and I would like to think that I wouldn't if the dementia was not a factor. I know that he is doing the best that he can. That is what makes all of this so sad. And I know that I am being selfish for wanting my marriage not to stop just because he has ALS, but it makes everything so much harder. The emotional toll on both of us is tremendous. Not as much for him, because emotions seems to be one of the things that is beyond his reach now. Probably a blessing for him, but torture for me. So again, thanks for listening and for all the suggestions. My best wishes and prayers for each of you.
 
My husband does not suffer from FTD, and I know what you mean. This disease robs both PALS and CALS. Even without dementia, my husband has become very focused on his wants and needs. Very rarely is there any interest in small talk. I think it is natural in the advanced stages of a terminal illness. Our children are 16 & 19. Sometimes, he will show interest when in everyday things when we are all talking. Like you, I miss our marriage. I hate that it has been replaced by the caregiver/patient rolls.

My thoughts are with you...
 
Dear Jwife,

I understand what you are feeling. My husband died in January of bulbar ALS and FTD. Coming to terms with the loss of everything, especially his personality is heartbreaking. I coped by hoping somewhere inside was the man I married and I talked to him and treated him as such. I didn't get much response but 2 weeks before he died we had an afternoon nap together. Unexpectedly he rolled over and hugged me, looked at me and I know he was thanking me.
You won't ever be who you were but you will be more human than ever, with much to offer after surviving this. It's not fair and it will never be the same but please take care of yourself. He would want that.
 
Oh Jwife... I did not pick up from your original post that FTD was involved. Yes... that makes a world of difference. I can remember reading posts by PALS on this forum about how grateful they were for the care their spouse was giving them. Those posts made me both angry and horribly sad because I knew that was a response I was never going to get. You are so right about saying it's like taking care of a toddler. My son and I came away with a new understanding of how very important empathy and inhibition are to the human personality. Without them the person becomes cold and self centered, as well as stubborn .... combined with a total lack of understanding concerning their health condition it makes caring for them so very difficult. I know this sounds harsh to those who have not dealt with an FTD diagnosis, but it is the daily reality of CALS facing a double diagnosis.

Jwife.. you're right, nothing.. medication, group support, respite.... none of it will bring back the spouse you've already lost. What they will do is help relieve some (not all) of the bone numbing exhaustion you're feeling. Please try to get yourself a break so that you don't lose YOU to.

Take care.
 
Jwifw, you aren't being selfish at all. Marta, just in case she doesn't see this, would not ever want you to feel bad for expressing your feelings. That is much of the benefit here...being able to express now you feel.

With FTD, I'm sure you feel as if you've already lost him. If you can, try to hold on to the good memories you have as you try to deal with these changes.

There are some in the FTD section that will be able to help you with practical issues, and all of the CALS and PALS will help you emotionally however they can. You've both been robbed of the lives you expected when you said your vows. Anger and bitterness are natural responses. No drug in the world can give you back your old life, but just maybe some support can help you as you struggle.



Please take some time for you. You both need and deserve it. Post when you need to vent. Sometimes writing about how we feel is very helpful.
 
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i say i have a hole in my soul now not just my heart
 
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