need some perspective...

Status
Not open for further replies.

smoochiegal

Active member
Joined
Jan 3, 2015
Messages
87
Reason
Lost a loved one
Diagnosis
08/2014
Country
CA
State
Ontario
City
Otonabee
Hello my friends...

What a rough go we have been having.
I don't even know where or how to start....

My husband is so not him anymore.
He was such a loving, caring man who would do anything to protect and show me how much he loves me.
How he is doing angry hurtful things and when I ask him about them later, he says he doesn't remember... I don't know whether to believe him or not...
The morning of my nieces wedding he was angry that I was having a friend of his stay with him so when I got up in the morning he told me to open up all the pill bottles for him as he was going to take all of them while I was at the wedding. I felt like he was punishing me for having to be gone that day. And I felt like he did not want me to enjoy my day... It was the first day I have been away from him since March!
When I tried to talk to him about it, he said, I don't remember that.
He said the same thing about a few other things that hve happened.
I am so angy with him. I am angry because I don't know if I can believe anything he says. I am angry because he seems to not give a flying f*** about me anymore.
He gets up at night 5 or 6 times to have a smoke... or course he can't do it on his own so he wakes me to help... when I ask if he can just go back to bed he gets angry and says he is still alive and if he wants a smoke then he sould be able to have one...
I am so tired.
I am feeling bitter.
I hate feeling bitter and angry.
I want to enjoy our last times together but I am not at all...
I need some perspective, some wisdom, some strength...
I need somthing.
Cheryl
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>I need somthing.

Oh, Cheryl is there a diagnosed of ftd? impossible situation. wish I could help somehow!
 

Attachments

  • 15603_1063204147023325_6659305243516844707_n.jpg
    15603_1063204147023325_6659305243516844707_n.jpg
    16.6 KB · Views: 148

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,771
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
hugs Cheryl

There are no magic answers as our loved ones are gone from in front of our eyes :(

If he is behaving this way it is possibly wiser not to turn it into a game on his terms - if he will state he doesn't remember, then maybe set some boundaries and don't try to talk logically about situations later.

How was he with your friend once you actually went to the wedding?

Up and down like that at night is going really tough. Do you both nap through the day? I'd be wanting a sledgehammer ;) But really you either have to set boundaries or go with his wishes. Arguing about it won't make anything better.

Perspective - this situation is as big as it gets. You are facing the hardest thing in your life and getting through every single day is a mammoth win. I wish it were better.

As Chris had FTD I learned to set boundaries and just stick to certain things. So I did not argue back, I did not try to reason, I simply let him go off, cared for him with love, and drew boundary lines where I needed to. It wasn't perfect, but it helped me a lot to cope.
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Love is the answer.

Your husband is hurt and full of rage. He cannot stand himself and what is happening. It is impossible to separate the disease from what is happening to us. I am not as physically as far gone as he is and yet I feel what he is expressing everyday. It sucks being on this side of the fence. When I can't stand it anymore I just want to push my wife away by being a total a$$, but when she is away, I cannot stand it so much that I would do all most anything to keep her near me. I don't want to be wrong about anything, and because of what this disease is doing, I can feel like I deserve to do whatever the heii I want. I am full of self loathing and selfish desires all at the same time.

When I remember however that I love her and what love means then I stop. She often feels frustrated and angry also, and so I try the best I can, to remind her of what love is.

Love is always counting the other person as more important than yourself. Even when it hurts me, I will do for her before myself, I am not important she is.

Most people are familiar with the description of love in 1Corinthians 13, but most miss the application that Paul is bringing with it. What he is saying is that those who he loves he serves with no concern for himself. Selfishness is the opposite of love.

So I simply encourage you to love. Let him know that you count him as more important than your self and that you always will no matter how he behaves, what he says, or what he does. We all get frustrated, we all go crazy, we are facing one of the hardest things anyone will ever have to face. So in the light of all of it Love.

I am not suggesting that you have not been loving. I am simply giving you the reminder that I need everyday and even hourly (perhaps i am saying it more to myself than you). It is when I intentionally think about this that I find some peace. I hope it adds the perspective you are looking for and helps in some way.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,194
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
I suspect he's angry and scared and preoccupied with his own mortality. He can't think of anything else. He can't feel for anyone else. It's the disease. Ask your doctor if he has an idea how to fix this.

In my previous job at the Veterans Administration, I dealt with many angry men daily, most were depressed, some were abusive, some were suicidal, and a couple were flagged as homicidal.

I considered each one to be a "patient" and considered their cursing attacks to be symptoms. Listening to the symptoms, I would determine what the patient needed to cure their anger. I never took it personally, because it was the disease speaking, giving me clues about how to treat the patient. Using this philosophy, I was successful in thousands of encounters, and only failed twice.

So maybe it's the disease speaking. He knows he's dying and he's completely scared and angry about that. It's something the rest of us can't imagine.

Cheryl, I've seen ALS destroy families. There's no need for you to be destroyed, yourself. If you must do it for your own sanity, you might consider putting him in a facility. No one could blame you.

Unfortunately, the light at the end of the tunnel is that someday, he won't be abusive any longer. It's true that your best days as a couple are behind you. It's also true that there are restful, peaceful days ahead of you.

--Mike
 

BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
629
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
Very well said Pete. I have a great deal of respect for you Sir.

There is no way to understand what he is feeling without being in his shoes. And there is no way he can understand what you are feeling without being in yours. Maybe in his mind he is pushing you away because he knows he doesn't have much time left and it would be easier on you being angry with him to let him go when the time comes. I doubt any of us will make logical decisions when we get near the end. Simply no way we can be logical and/or reasonable given what we face. As much as I love my wife, sometimes it makes it even harder on me when she is so loving and caring of me because it makes me that much more sad to know I'll be leaving her. I know, it doesn't make sense but not much does anymore.

The only thing I know to do is to pray for both of you and everyone else that is going through this. Hold on to those "good moments", no matter how few and far between they become.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,555
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Oh Cheryl, I think what you are experienceing must be the cruelest cut to a CALS. As you said, he's not him anymore--for whatever reason. I can't begin to imagine what he's feeling, but you can't survive being abused, and that's what he's doing. Firmly, and with love, draw boundries. As Tillie says, there's no point in arguing; just draw boundries and enforce them. I know that I could not and would not get up 5 or 6 times a night to provide a smoke. It would make caring for him during the day impossible.

I wish I could wave my majic wand. I wish, I wish, I wish.
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
City
By the beach
Cheryl, my heart breaks for you. I can offer no good advice, except to agree with Peter, Mike and everyone else.

My father in law has alzheimers. My MIL fought tooth and nail about not putting him into care. In the end, we kind of made her do it, it was the best thing she did.

She now has a life. When I say life, she can go food shopping, doctors appointments, play a bit of sport, do dishes...peacefully. She gets sleep these days.
She visits him twice a day, feeds him, puts him to bed. Still does his washing. Still CARES...

This may not be an answer Cheryl, for you, but you can 'walk away'...and come back...over and over again. Having breaks may refresh and recharge you ready for whatever tomorrow will bring.

I'm glad you have this forum, to see the disease from both sides. To have reassuring words..

Take care of YOU Cheryl, and the rest will follow.

God bless, Janelle x
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
Cheryl, all CALS can relate to the fact that your role is SO difficult- but to feel unloved and unappreciated is a killer. Hard to keep saying "it's the disease not him!" Do take care of your mental health or you won't be able to continue. Is respite care available so you can REALLY get away for a day or two? Hugs to you. Some of our PALS clarified the frustration they feel, and the way they push those they love away. Thanks guys, for your honesty and logical explanation to help Cheryl through this!
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Cheryl, sending you good thoughts and love! keep sharing on the forum. chally
 
Status
Not open for further replies.
Top