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smoochiegal

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

What a week. What huge fights. So much frustration. So much stress.
So the week started off well. We had a wheelchair delievered as his legs and balance are so bad. But surprise, surprise he refuses to get into it.. Still insists that he can walk down the stairs to the garage.. yup, you see where this is going..
So, my niece is getting married tomorrow and I am in the wedding...the bridal party was going for pedicures on Wednesday. I had arranged for his good friend to come and stay with him for 2 hours. I had filled her in on lis weakness and loss of balance.
So I leave.. and he starts to rage at her about how he does not need a babysitter, that she should just go. He gets up, walk into the garage and tries to put his beer in the holder, drops it, gets really angry then and proceeds to kick the beer bottle, smashing it everywhere and the losing his balance and falling on his head on the cement floor. I had been gone for 17 minutes when I get the call that he fell and there is A LOT of blood. ... long story short (and let me tell you it is a long story.. he was such an ass in the hospital ending in me telling him that if he left the hospital without being seen by a dr that I would not be going home to care for him) So a number of stitches later, a concussion but no skull fracture or bleeding on the brain we got home.
He then tells me that we should have left him to die on the garage floor.. that 'See, no one can stop my fall so I can be home alone as no one can do anything to stop a fall'. He honestly is using that as leverage for the argument for staying home alone... AHHH
So, we fight for 2 days about me needing to be at the wedding this weekend without having to worry about him falling and he just does not get it. But I said that his brother and friend would be here whether he liked it or not...
He is angry. I am beyond frustrated and I am going to the rehearal today and the wedding tomorrow and I am going to do my damnest to enjoy it and not worry.
If you are still with me after that long rant, I love you....

Hope you all have a great weekend.
OX
Cheryl
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Cheryl, all I can say is remember that it is not you he is angry with, it is his helplessness to do anything about what this damn disease is doing to him.

We can feel very sorry for ourselves and just want to end it all because there is no way to escape. We try and do things that we know we shouldn't just to get some normalcy or control back. I have contemplated going for a long run (even though my breathing wont let me walk for a 100 feet) just to "speed up" the disease and hopefully die while doing something I use to do and love.

This is just my stubborn stupid sinful man speaking and when I am thinking this way it is not with love for my wife but out of EXTREME frustration and hurt. You know how bad it makes you feel, he feels all that and more. He just does not know how to express it or deal with it.

I am glad you held your ground and are having his brother there to help. Try and take a breath at the wedding and enjoy it.
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
Oh Cheryl, ache for both of you. Pete has explained it SO well.
One thing that made it "easier"? For my hubby to accept someone staying with him was the idea of giving the brother ( or friend or whoever) a chance to have time alone with him, without my interference. We talked of it as a gift for them both.
Hope you truly can enjoy the weekend. Having someone there is the ONLY way you have a shot at not thinking of him constantly.
 

Annie's Phil

Distinguished member
Joined
Nov 22, 2011
Messages
302
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
MD
City
Eastern Shore of Maryland
Yup, still with you dear Cheryl. I have little doubt that his insistence on doing things for himself and being independent is a typical expression of desperation (and probably a good dose of denial) that many, if not most, people have when frantically clinging to our sense of self-worth when confronted with the continued progression of permanent disabilities. It's different than being able to accept the limitations of acute illness or injury, which will eventually heal. There's a sense of the ultimate surrender - that there's no going back if we accept our actual limitations as soon as the appear. So we fight, we struggle to keep what we have - or at least what we think we still have. We try to make ourselves believe that today's fall was a freak - that it could have happened to anybody. Inwardly, we're really scared that it wasn't a freak, we're crying like a child inside, but we don't want to be treated like an invalid - we should be the one's helping others, not being dependent on the help of others, especially for the simple, everyday activities of daily living. So although inwardly we're really afraid that our sense of meaningful life is slipping away, we hang on to desperate hope. Of course the reality is much plainer to others and a purely factual, logical consideration of the facts and implications is going to resolve in favor of the objective observer, so the patient realizes he isn't going to convince anyone by a calm discussion of our situation. Instead, we resort to simply stating the "facts" as we want them to be. That of course is unconvincing, so we insist more loudly. Things escalate. Voices get louder and angrier. Desperation and fear can become disguised in belligerence.

In addition to the physical aspects of this disease, there are deep psychological wounds as well. I think you are witnessing evidence of that. Ultimately, his acceptance of the actual state of his abilities is going to have come from within himself as a result of the battle within himself. Glimpses of that inner battle are played out in outward battles with other people, and sadly, most often with those who love them the most and are most loved by them. But although his body is failing he is still a grown man and needs, and deserves, to be able to make decisions for himself. Standing back and allowing them to make those decisions can be very hard, but I think will probably lead to earlier acceptance on the patient's part if they don't feel like they have to win an outward battle as well. Of course, they might suffer as a consequence of their decisions, but as you have witnessed, that might well happen in any case.

Putting myself in his shoes, I'm sure I would be relieved if my wife simply assured me that my life was still my own and she would fully support my decisions regarding my needs. Though perhaps subconsciously, I would know that changes in my routine need not be irrevocable. I would have the peace of knowing that I didn't have an outward battle to fight as well as the one I was fighting with the disease.

Just my two cents worth. My heart aches for both of you.

Grace and peace to you.
-Phil
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Cheryl, I am glad you are getting out for a break. Even if you think about your hubby, a couple days away with other people, a good nights sleep, etc will really help. Please know we are all here with you and support you.

My two cents in the compromise we made. When Steve is alone, he wears his life alert around his neck. If he refuses to wear it, I have someone be with him. He chooses, and I don't worry. Yes I know he could remove the life alert when I leave but that is his choice. He knows I would worry.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
> Try and take a breath at the wedding and enjoy it.

Ditto that!

>He gets up, walk into the garage and tries to put his beer in the holder, drops it, gets really angry then and proceeds to kick the beer bottle, smashing it everywhere and the losing his balance and falling on his head on the cement floor

call him 'max' and see if he gets it :)


remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
#6 power off pwc when not driving and Don't ram wheelchair into immovable objects

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have :)
------



Max - Saturday, June 20, 2015 9:37:30 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 

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
Enjoy the wedding Cheryl...you deserve a good time. I also totally agree with Pete. He is definitely angry at the situation not you. It is very difficult to be faced with all this from both points of view.

Just before I read your post Wayne and I had a fight about a kitchen reno. If all we have to complain about is the colour of kitchen bench tops then we have nothing to complain about.

Reality checks are good for us all.

Take care, I hope your beloved heals well.

God bless, Janelle x
 

avnl

Distinguished member
Joined
Sep 6, 2011
Messages
158
Reason
CALS
Diagnosis
02/2005
Country
US
State
RI
City
warren
Enjoy the wedding and rant away. We are with you!
Anna
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,768
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Oh Cheryl don't I know all those behaviours and the affect they have on you.

I so truly hope that you can have a wonderful time at the wedding and that his brother and friend can find a way to have some good times with him in your absence.

hugs
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Gosh Cheryl, he sounds so angry at the world right now and is taking it out on you. You have so much on your shoulders and in your heart, so you must not let it get to you. that is easier said then done, but please try. he loves you but he is so unhappy with what is going on. I think I remember that he refused anti-depressants? they could really help him. maybe you could try again with them -- anger is often depression turned outward.

Meanwhile, enjoy the wedding and you are doing the right thing having people stay with him. hold your head up high, and have a good time today.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>Meanwhile, enjoy the wedding and you are doing the right thing having people stay with him. hold your head up high, and have a good time today.

Ditto that!
 

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