Old 10-30-2008, 04:22 PM #1 (permalink)
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Question husband in "final stages"

Hey out there! This is my first time doing this. Have had counselors, hospice nurses, Duke ALS, etc. Still not coping with all of this. Husband Perry is I believe in "final stages" of this horrible disease. I know that there is only One who can answer my question of "when will this finally be over?" I just would like to have some kind of an idea. He's completely bd ridden. Stopped the Rilutek. We think it's already done the job of 2 or 3 months. Just sooooo hard to deal with. He's soangry and mean. We have 2 young boys. 5 and 8. Don't want to sound selfish. I just want him to be at peace and the boys and I begin to start our life without him. Thanks for any reply. This has been going on for 2 years now. He has been in respid care for 5 days. Needless to say he furious with myself and sister-in-law, his primary care givers. We all (including boys) needed break. Leigh Ann
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Old 10-30-2008, 09:32 PM #2 (permalink)
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Leigh Ann-

I'm so sorry that your husband is suffering and that you are suffering, too. It's overwhelming, being the caregiver. And when the people we love so much change and are affected by this crap of a disease, it's breaks our heart. You are entitled to be exhausted, frustrated and sad.

My mom died in June from ALS. I was her sole caregiver for two years. In the final couple of weeks of her life I spent a lot of time thinking about what my life would be life when she and I were free of this disease. I felt SO GUILTY for this. Even though my mom talked (when she was able) about the plans I would make after she was gone. Now that she's gone, I yearn for every second that I wasn't with her. I didn't know she would pass away so soon, and when I think of the three hours I took to go to dinner when the respite people were with her, I want every minute of it back to be sit with her instead. Your time with your husband may be short. You will likely have many years to have a different life after your husband's suffering is over.

Love him now. Love your children now. And know that there are so many people here to support you in this struggle.

Kaija
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Old 10-30-2008, 09:44 PM #3 (permalink)
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Leigh Ann,
Yes, you have done a marvelous job and so has your sil, and , yes it IS a horrible disease. However, you know God will watch over you in this stressful time.
I can't imagine how it feels, in my home, I'm the mom with ALS with 3 boys and a hubby.
Please know that this forum is the best place to find support and understanding, I hope respite care will give you a well deserved break.
I'll definitely keep you and your family in my prayers,
Respectfully,
brenda
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Old 10-30-2008, 09:48 PM #4 (permalink)
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Default same here

Hi Leigh Ann,
I am so sorry that you had to end up here. You are right this
diease stinks so much. There is no way to tell the time frame.
It is different for everyone. My husband was DX in nov 06 and
he has been mean and hateful for a very long time. I also put
him in for respite care and he was mad too, but I think he did
realize what the children and I do for him everyday. He is now
to the point that he just wants to die. it is horrible to watch.
There are no good words to give you other that I will be praying
for family. I dont think my husband will ever find peace, but maybe
it will be different for you. There are many wonderful people here
who can give you support. take care.

sheryl wife of scottie Dx nov o6
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Old 10-31-2008, 12:39 AM #5 (permalink)
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Smile Ouch

Hi Leigh Ann:

life throws us such curves sometimes. i am sorry for your pain.
i am typing this with my pinky, i am now losing my legs. what
you describe is exactly what i don't want to happen to my wife
and 4 young kids, that i become such a burden to them that i
wd rather be dead. i pray for you and your husband, he doesn't
want this 4 you. God Bless ....

Shane
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Old 10-31-2008, 11:11 AM #6 (permalink)
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Hello Leigh Ann and Shane
First I want to say to you Leigh Ann I understand how you feel as my husband took out his anger and frustration with what was happening to him on me and although as I have been told I have big shoulders it took it's toll on me physically and mentally and I am sorry you have to go through this and with such young children. There are signs that time is coming to a close and Hospice should give you heads up on this accuring.
Shane for me it wasn't a burden looking after my husband and the father of my children, I did what I did because I cared for him and wouldn't have done anything else, the burden was endurring the crap that he delt out with his frustration and pain because he couldn't deal with what was happening and knew no other way to handle it so he took it out on me that was that was the hard part.
Talk to your wife and let her talk to you it will help.

Take care both of you.
Cheryl
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Old 11-04-2008, 08:07 PM #7 (permalink)
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Leigh Ann,

I, Too, Feel Guilty Every Day Now, And Have For Many Months Because I
Am So Very Tired And There Are Many Many Days I Just Want This To Be
Over For Us Both. My Husband Was Dx In Jan. 07, And Now It's Almost
3 Years He Has Hadel This Monster Disease. He Is Completely Bedridden,
Cannot Feed Himself, Has To Try And Talk Thru A Bipap Mask, And I Have
To Walk Over To His Bed Every Time He Speaks To Try And Hear Him. For
Some Reason He Decides To Talk When I Am The Busiest, Or Have The
Laptop On My Lap, Or Just Leaving The Room.

I Get Soooo Frustrated With This, And Feel I Have No Life Of My Own
Anymore, And This Brings On A Great Deal Of Guilt For Me. I Know After
He's Gone I Will Regret Feeling This Way, But I Cannot Help It.

I Do What I Do For Him Because I Love Him, And Know He Would Do
The Same For Me, But I Feel I Am A Prisoner In My Home, And Altho
He Is Not Mean And Hateful, He Is Demanding And I Bite My Tongue
A Dozen Times A Day.

You Are In The Right Forum, And I Hope We Can Help.

Jackiemax
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Old 11-05-2008, 01:01 PM #8 (permalink)
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Jackie-You are doing more than one person can logically accomplish with only 2 hands and 2 feet and 24 hours to get it all done. Time to call in the troops, I say. Hugs, Cindy
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Old 11-06-2008, 08:11 AM #9 (permalink)
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Ladies,

What you are feeling is normal. My father also was mean for a while, he was so angry to be sick and yes, we almost always take out our feelings on those we are closest to... because we know that they will love us and forgive us no matter what. It takes a toll, especially if others depend on you too, like children. I think at times that the biggest burden is not the care you have to provide but the worry and anxiety you feel 24/7 whie caring for someone you love that has ALS. It makes it harder if they are difficult, as your husband is and my father has been, because it feels like they don't appreciate everything you are sacrificing and doing for them. They do appreciate it though and at some point, gentleness will come with their acceptance of what is happening to them. Treasure the good moments and forgive yourself for the feelings you have during the bad moments. You're not a saint and that's okay. I had to get to a point where I called my Dad on his attitude and told him his behavior was hurting me when all I was trying to do was be there for him. Once I got upset enough to tell him that, I told him that more often and it helped him to know it. It taught him to be more patient with me, and himself.... and with some of the others that tried to help him.

Hang in there and know that although this illness and the heartache it brings feels like forever, it's not. Determine what will bring YOU the least amount of regret and follow that path. It may be that moving your husband to a facility that can care for him is the right thing to do... I don't know if they have hospice houses where you live but moving my Dad to one was the right choice at the right time. I'm still a huge part of his care and visit him almost daily but at night I don't have to worry about what to do if he falls. Well at this point, he can't fall because he can't move anymore but when he went to Hospice he was having falls up to 4 times a day and I could no longer pick him up on my own. Look into your options and find the best one and move forward, without guilt, to the best of your ability. We are all only human and can handle so much.

Sandy
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Old 11-06-2008, 08:53 AM #10 (permalink)
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What you're feeling is perfectly normal and you should not feel guilty now or later. The constant anger and sulking can wear you down . There is nothing abnormal about wanting some peace and happiness back in your life.
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Old 11-06-2008, 09:47 AM #11 (permalink)
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Thank Y Ou All For Your Thoughts And Replies. I Tell Myself A Hundred Times
A Day That He Did Not Ask For This, And If It Were Me In That Bed, I'd Want
To Just Go On To Heaven And Be Whole Again, And At Peace. We Don't
Always Put Ourselves In Their Places Mentally, But We Probably Need To.

I Love This Man Dearly And He Would Do All This For Me. Some Days Are
Better Than Others. Yesterday Was One Of My Worst Ones. I Even Emailed
My Doctor And Bawled Him Out. Lol

This Forum Is Wonderful, And I Consider You All A Friend.

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Old 11-12-2008, 03:33 PM #12 (permalink)
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Hi Leigh Ann,
I have visited this site on and off for a few months. I have never posted a reply to a thread. However, after reading yours I felt compelled to reply. My husband was diagnosed about 2 years ago with ALS. However, I have not had the opportunity to be his caregiver. You see we were separated by protective order due to domestic violence. Little did I know that he was suffering with ALS (he was stumbling, had very slurred speack, had some severe choking incidents) but most of all, he pushed me and our two young children away. He was very mean and became violent on several ocassions. I did not know exactly what was wrong. Although, I knew that some was terribly wrong. He rejected any suggestions and requests I made to see a dr. It was not until we were separated that he sought medical help. Once he got his diagnosed, he rejected the children. It was very difficult for them. They had a difficult time trying to forgive him for the two instances of domestic violence. Then I had to tell them that he had this horrible disease. To make a longer story shorter, I began taking the children to visit with him. They were always nervous but would rather endure the visits than to not see him at all. On Christmas (2007) they saw there dad for the last time. He cut off all visits and communications with them and me. What I would not give to see and talk to him. I wish that I had been given the opportunity to be his caregiver. Although things for us were very very difficult. I miss him. My life is upside down. Not just because he is not there. But because I still love him with all of my heart. We have been apart for more than two years. But I love him just as if he were still with me.

So I guess what i am trying to say is, I know that it is very difficult. But, you still have him. Love him for as long as you can. These difficult times will disapate (?) at the end and you will not remember those times. You will be able to hold on to the good times and memories you shared together. I sure wish that I could just hold him again and tell him how much I love him.

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Old 11-12-2008, 07:33 PM #13 (permalink)
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Default the well spouse

Quote:
Originally Posted by JACKIEMAX View Post
Leigh Ann,

I, Too, Feel Guilty Every Day Now, And Have For Many Months Because I
Am So Very Tired And There Are Many Many Days I Just Want This To Be
Over For Us Both. My Husband Was Dx In Jan. 07, And Now It's Almost
3 Years He Has Hadel This Monster Disease. He Is Completely Bedridden,
Cannot Feed Himself, Has To Try And Talk Thru A Bipap Mask, And I Have
To Walk Over To His Bed Every Time He Speaks To Try And Hear Him. For
Some Reason He Decides To Talk When I Am The Busiest, Or Have The
Laptop On My Lap, Or Just Leaving The Room.

I Get Soooo Frustrated With This, And Feel I Have No Life Of My Own
Anymore, And This Brings On A Great Deal Of Guilt For Me. I Know After
He's Gone I Will Regret Feeling This Way, But I Cannot Help It.

I Do What I Do For Him Because I Love Him, And Know He Would Do
The Same For Me, But I Feel I Am A Prisoner In My Home, And Altho
He Is Not Mean And Hateful, He Is Demanding And I Bite My Tongue
A Dozen Times A Day.

You Are In The Right Forum, And I Hope We Can Help.

Jackiemax
I feel the same way you do.There is a support group called the "Well Spouse".Men and women meet once a month to discuss exactly what you are feeling.You are not alone.They said you feel like a widow with a husband.I am going through the same thing.My husband was just diagnosed with ALS.We have been trying to get a diagnosed for 16mos.He has had a personality change.I actually cant wait for him to go into a respit type place.I think I would be a better care giver if i could let someone else take care of him at night.I dont sleep cause I worry .I think with a good night sleep and knowing he was in more experenced hands would be better for everyone.Hang in there!
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Old 11-13-2008, 09:43 AM #14 (permalink)
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Your post is very interesting and informative. I also have feelings of guilt because I feel like my children's and my life is just in such a state of suspension. I love my husband and would give anything to free him from this illness. Even though we don't speak any more and he has totally cut us out of his life. It doesn't hurt any less. But I am so totally in the dark and we can't move on until this is over. And I am sooooo torn. I want it to be over but I don't want him to go. But at the same time I don't want him to continue to suffer. How do I find this support group 'Well Spouse' in my area (Baltimore, Maryland).

My children and I have been in counseling now for about two years. It started with domestic violence counseling because the reason we are apart is due to domestic violence. However, as time went on, I realized that he was angry and afraid of what he had to face with this illness that he just became violent. Once we found out about the ALS diagnosed, he would not even talk to me. He did however agree to see the children for a while. Now he has cut them off. We need some help understanding and coping with this from someone that understands and can relate to this specific kind of situation.

I'm sorry for rambling on, and on. But I feel like I am at my whits end. So I turn to this forum for answers, confort and advice. Thank you all sooooo much. I don't know what I would have done had I not found you all.


If someone knows anything about 'Well Spouse' in this area please let me know.
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Old 11-13-2008, 01:09 PM #15 (permalink)
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Dear Shrimpbox73,
I am very curious about this group "Well Spouse". I really need some help just talking. I see that we live very close to each other. Please send me whatever info you have. Thanks.
Lin
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