How do you make the pain stop

[JOSIEM02]

Hi all, I am sitting here with my husband and he isn't dealing with things so well right now and he told me he doesn't understand how I get on this website. Things are getting worse with his mom. I explained how much help you all have been. So I am posting this question for him. He wants to know how you make the pain stop. He said its like a burning in his soul. I told him I would ask and there would be suggestions. Please any thoughts? Love to all Josie

 

[abbas child]

Dear Josie, I would refer you and your husband to the "Christians Here.." thread on the PALS section. As a pals myself, I will say that the Lord is my peace... and the fellowship of His believers is very helpful. Meanwhile, your husband and his pain will be in my prayers.
Ann, with love.

 

[trusting]

Hello to you both,
My mom was officially diagnosed 3/2010 though she started showing symptoms end of 8/09. I have watched my mother lose her speech and swallowing and she recently had a feeding tube placed. She uses a communication device but it isn't the same as being able to pick up the phone and talk about your day. Each loss has been painful and a grief process as we say goodbye to going out to lunch together and chatting about our lives like we used to. There have been lots of tears. Now that she is weaker she needs help with a lot of her normal activities of daily living. It is a strange role reversal as her children begin caring for her the way she cared for us as children. Unfortunately, the pain of loss is unavoidable and grief is a journey that we have to take. Avoiding the pain doesn't work as it will pop up later in life if we don't go there now. I have done some things to try to help myself - I am exercising at a gym (a new thing I wasn't doing before...it is empowering and takes my mind off my problems if only for an hour or two-also, getting stronger has helped me care for my mother better). I cry with my husband and my sisters and talk about how we're feeling. I have taken some time to relax by myself and just think and breathe. My faith does help...I know that when my mom dies I will see her again and spend eternity with her. It is a comfort to me to know that this is not all there is. I know my words won't take away the pain, but know that you are not alone. There are other people who understand the pain and grieve with you. I'm so sorry you and I have to go through this. I'm sorry that our beautiful mothers have to struggle and grieve also. I am praying that we will find moments of beauty during this time - a shared smile or laugh with our moms, a chance to say I love you and let them know they have been loved. Thanks for a chance to share a little of my story and may God bless you and your mom with a peace that surpasses understanding.

 

[trusting]

Hello to you both,
My mom was officially diagnosed 3/2010 though she started showing symptoms end of 8/09. I have watched my mother lose her speech and swallowing and she recently had a feeding tube placed. She uses a communication device but it isn't the same as being able to pick up the phone and talk about your day. Each loss has been painful and a grief process as we say goodbye to going out to lunch together and chatting about our lives like we used to. There have been lots of tears. Now that she is weaker she needs help with a lot of her normal activities of daily living. It is a strange role reversal as her children begin caring for her the way she cared for us as children. Unfortunately, the pain of loss is unavoidable and grief is a journey that we have to take. Avoiding the pain doesn't work as it will pop up later in life if we don't go there now. I have done some things to try to help myself - I am exercising at a gym (a new thing I wasn't doing before...it is empowering and takes my mind off my problems if only for an hour or two-also, getting stronger has helped me care for my mother better). I cry with my husband and my sisters and talk about how we're feeling. I have taken some time to relax by myself and just think and breathe. My faith does help...I know that when my mom dies I will see her again and spend eternity with her. It is a comfort to me to know that this is not all there is. I know my words won't take away the pain, but know that you are not alone. There are other people who understand the pain and grieve with you. I'm so sorry you and I have to go through this. I'm sorry that our beautiful mothers have to struggle and grieve also. I am praying that we will find moments of beauty during this time - a shared smile or laugh with our moms, a chance to say I love you and let them know they have been loved. Thanks for a chance to share a little of my story and may God bless you and your mom with a peace that surpasses understanding.

 

[mare]

Josie-
Please tell your husband I am sorry for his pain.

trusting-
That was a beautiful post, as well as wise words.

 

[JeffP]

josie i feel for your husband .just watching someone you love fall apart in front of your eyes and you love is a natural feeling .i know that doesnt make the pain lesson.but try and help him enjoy the time he has with his mother and be there by his side for a shoulder to cry on .i remember losing my mom to cancer and the pain watching her in pain and nothing i could do about it .its a hard one to face i hope you both believe in god and the strength and comfort he has for you guys your in my prayers jeffp

 

[JOSIEM02]

Ann, thank you for your post. He is questioning "why, if God is so loving and caring why would he allow this to happen. I know it's not God and he knows it not God but right now he's angry because things are getting so bad. Trusting thank you for sharing. I'm sorry to hear of your mom. Noone should have to go through this. Mare, thank you for your kind words. Jeff, you are so right, he can't bare to stand back not beable to help her, or take it away and thats what hurts. Josie

 

[Mike27]

Hi Josie, This disease is a tough thing. My mom has dementia and it is heartbreaking to watch her fade from us.
All I can recommend is have your husband stay intellectually busy. Have him study everything about ALS. Learn about all the little details of what she's experiencing-physically, mentally and emotionally. Learn about the different adaptive equipment available and therapeutic resources. Perhaps he would benefit from volunteering with a local support group or ALS Society.
Funny as it sounds, the worse thing he can do is think. Just thinking about the disease, his mom and the way things were before her diagnosed or anything else that is beyond our control, is not healthy. Not for your husband and not for his mom. (she'll be able to tell that her condition is affecting his well-being.)
He'll never lose that sick feeling in the pit of his stomach, but perhaps he can dull the pain by staying busy.
I don't know how spiritual your family is or anything, but I can touch on that a little in another post if you want, keeping in mind that I'm no expert on matters of faith.

 

[JOSIEM02]

Mike, thanks for the advise. He is just to the point where everything is just going so fast and we can't keep up. It is to the point where she needs more than we can provide and he knows it as well as his mom knows but says no to any type of nursing home. The clinic 2 weeks ago told us she only has about 3 months because of how low her breathing is. So we do everything for her because she can't but it just isn't enough and he's feeling like he is failing her. I know he's not, she knows he's not but he can't see it so this is where all the anger and frustration is coming from. She has said many times shes ready for this to be done but that don't help us left behind. As you all know. I watched my father suffer from cancer and lost his life to it, so I know how empty he feels not being able to stop this monster. Josie

 

[Mike27]

That's a tough situation Josie. I'm real sorry you folks have to endure this.
I can relate to his mom not wanting the nursing home. When my mom's dementia got to the point that she was beyond our capacity to help her, we knew her needs would be met in a far superior fashion, in a place with 24/7 care.
I know some people like to criticize nursing homes and even make families feel guilty for "dumping" loved ones there and not caring for them in their homes. But truth be told, sometimes you just can't.
My mom was not happy going to a home, but we filled her room with her things and photos of family and friends. We're there more often now than when she lived in her condo. The nurses on staff are great, they have many rec activities and we can rest knowing she gets care round the clock care.
The decision to move her to a home was mine and mine alone. It took lots talk, prayer and tears to come to it and my mom didn't talk to me for a time. But I had to do the best thing for her and sometimes you need to step in and make the hard choice when you know she can't or won't.
Either way, I truly hope things work out for your family.

 

[TammyB]

I know exactly what you are saying...this pain and panic in my chest that won't go away. The ball of sadness that overwhelms me sometimes and I just burst into tears. I had to have my SAINT of a husband lift my Mom onto her commode to clean her up after she soiled herself the other night and she was so mortified. I managed to keep a smile on my face and tell her it was all right and that she did the same for me but I never slept that night. The ball of sadness grew and the pain took over my whole body. I haven't been on here in about a year...and you may guess that life has changed...but what gets me through is that when Mom is with us, my kids are so happy to see her. They help her stay comfortable and draw her pictures. I find comfort in knowing when she is with us (50%) I KNOW she is getting good care and that she is too busy with my crazy babies to focus on death and sickness. I also find a LOT of peace in volunteering for the ALS Society-though I couldn't get the time this Spring to do so. It makes me feel less helpless and that I am making a difference in some small way. It really does help...I was amazed.

 

[Just J]

Josie, I am so sorry things are going so quickly for your MIL. Your hubbie has to understand that he is grieving. Even though his mom is still here, he has begun the grieving process. I lost my father suddenly 18 months ago and it was debilitating pain for me. I did some reading back then on grieving and that's when I learned in the case of someone who is terminally ill the grieving process starts before actual death. I also learned that grieving is different for everyone so your husband just needs to recognize the emotions he is experiencing and that it is ok for him to grieve now, even though she is still alive.

 

[irismarie]

JOsie, darling, please try to help your husband understand that some questions just have no answers. We just do not know why or even if there is a reason these things happen. He needs every ounce of his energy and strength to give to you and his mother, so encourage him to use it on things that CAN be done, questions that CAN be answered, like, "how can I best help her?" And even that one is difficult!

Questioning God serves for nothing. If you believe, you believe and must accept that He does indeed move in mysterious ways that clearly we could never understand. That is part of the challenge of your belief.
Ask him if he must question, to keep that for later. Let him now give his mind and will to practical, living, loving issues. His doubts are not furthering the wellbeing of your MIL at all..................
(not saying I do not understand, of course)
Love an strength

 

[JOSIEM02]

Thanks for all the replies. Sorry it has taken a few days to reply. Each and everyone of you always give great advise and truly understand. I would be completely lost without this site. Love to all Josie