Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
554
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
How I hate that question now.

It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging on by a thread. So what should I say? "Yeah, life pretty much sucks right now?"

We've hit a rough patch lately. No big changes physically, just the steady decline. It's this slow, downhill roll that is getting the best of us. DH is frustrated and angry. He wants it "to be over with" in his words. I don't think he's ready to take any steps to hasten it, but he is miserable. I feel for those who have fast progression and are gone so soon, but honestly, this long-term existence can be horrible too. And I do mean existence, I can't say we have much of a life right now.

DH can't do much of anything for himself. I've tried to automate as much as possible with Alexa and other stuff to keep him as independent as possible. But what does one do to fill the hours when they have no use of their arms and legs and are constantly sore and fatigued? He's desperately bored. He spends hours upon hours watching TV. At night, in bed, he uses his iPad to watch videos or read. And winter has been tough. He's cold all the time, so he doesn't want to go out. So he goes from the bedroom, to the bathroom, then to the sunroom, where he sits with the heat up, an electric blanket and the TV on until it's time to go to bed again. He eats in there and even has me bring the urinal so he doesn't have to drive his chair to the bathroom. And he wants me to sit there to be at his beck and call all day.

Sleep has been bad this week. Sunday night, he had what I can only describe as a panic attack. He said he was hot and wanted the covers off. Then he said his heart was beating too fast. He was crying and telling me he wanted to go and how much he loved me. I checked him for a fever or anything else that I could think of and nothing was physically wrong. So I tried to calm him down, but it took a long time. I gave him an additional Ativan (he takes a number of meds at night for sleep and anxiety). Finally, he calmed down enough and did get some sleep, but then I couldn't fall back asleep. The scene repeated itself, to a somewhat lesser degree Monday night. Tuesday he seemed to sleep a little better, but then yesterday, all hell broke loose again.

He woke up around noon and wanted coffee. So I got him coffee and helped him with it in bed. He's gotten in the habit of staying in bed until he has to go to the bathroom (BM). So I watched the news with him until he said he had to go. Got the sling under him and hooked up, and he says "You didn't stretch me yet." I usually stretch him and do his ROM before he "goes". He said he wanted me to put him back in bed after and stretch him. OK. Hoyered him to the commode, where he has an awkward way that he "has" to be positioned to go. First he said he was too far to the left. Lifted him again, put him back down. OK now? "Sure" was the answer I got. So I left to give him some privacy and stood on the other side of the door. He called for me and I see a giant puddle of urine on the floor. And I think somewhat of a smirk on his face. I didn't say anything, just cleaned it up. He commented on how I wasn't doing that correctly either. Got him back in bed and went back to clean the commode and throw out the mess. Go back and start to stretch him - admittedly, I'm a bit annoyed. Again, he says I'm not doing it right and starts yelling that I don't care about him. Long story short, we ended up yelling at each other for probably a half hour. I feel horrible. I don't know how everyone else seems to keep it together going through all this.

We're back to OK for now, but I know this probably won't be the last time things go awry. The whole dynamic of our relationship has changed so much due to the situation. We both were independent but our strengths and weaknesses complemented each others, so we worked well together. I love him and I know he does love me, but we're struggling.

Sorry this has gone on so long, but I've been holding a lot in and this weeks events, I guess have been my tipping point. I needed to vent. I'm just so sad.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,881
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
This disease just keeps on taking right to the very end.

Venting is so important - you are only one person and you are actually doing more than one person really can cope with over a long period.

I'm not going to offer advice, just completely acknowledge your horrific pain and sadness at what is being robbed from you both. This SUCKS and I'm so sorry.

What to answer people who ask how we are is whole other story - one of the best I heard suggested was "Doing well thanks, oh except for the dying bit". Hugs to you.
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
506
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
Jrzygrl, I heartily agree that life sucks now and your words could have been my own. My husband also is slow progression and I no longer think that slow progression is a blessing.

Frank does nothing but watch TV all day and half the night. He is unable to use the eyegaze computer any more because of difficulty focusing his eyes-- probably another ALS gift. His speech is very poor and only I can understand him although that is getting harder for me too.

His neck is completely flexed and tilted to the right and is in pain but refuses my attempts to give him any pain meds other than Tylenol, which is pretty useless. He complains about his neck all day. He does not sleep all day and that is after sleeping only 4-5 hours a night.

I admire your ability to get your house mostly automated. I am not very tech savy at all so I spend all day changing TV channels, tilting his chair, putting the chair back up, tilting the chair again, turn the heat up, turn the heat down, put blankets on, take blankets off.

I am emotionally dead. We have frequent fights now and I feel so guilty afterwards. I worked with my husband for 15 years and we never fought. I go through the motions of taking care of him every day but now not a day goes by that I don't ask when will this end? Will I ever find myself when this is over?

I also hate the "how are you?" The truth is I am barely hanging on and I sometimes think my husband will outlive me.

I realize that I can not give you any advice to help you deal with all this but I want you to know that you are not alone. Sending you a virtual hug and really hoping that tomorrow is a little better for you.

Sharon
 

diagnosed2016

Distinguished member
Joined
Apr 30, 2016
Messages
185
Reason
CALS
Diagnosis
04/2016
Country
US
State
California
I answer “still here” because it’s how I feel. Not good, not ok, no awful, just surviving.
I get frustrated with all the demands too. I don’t feel guilty though- as much as he is going through an awful time, so am I, and I think we are both allowed to be angry about it, especially when the constant requests are overwhelming for caregivers. We are all just doing the best we can in our situation, so don’t beat yourself up.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
109
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
That question is so hard. For a long while I found myself trying to reassure others that I was ok. Now, my response is ‘one hour at a time’, I am too drained to pretend this is anything other than heartbreaking.

I had a talk with my husband about patience, I framed it that we both need to be patient with each other, but he is very sensitive to any suggestion that he is not patient... so I told him even if it was just my feeling that he was short or snapping at me, it was a valid feeling. We also were very independent people and he is used to me handling a lot of stuff on my own, and I don’t think quite realizes that I am still handling all those things plus taking care of him 24/7.

The sadness is so overwhelming. I love him and miss him at the same time. It is so strange.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,521
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
This is exactly how I was feeling. We fought too over the same stupid little stuff. However, I think the fighting is good for both of you. Hopefully he will realize what you are going through a bit and you him.

Yes, you feel like you are just going through the motions sometimes. And I agree whole hartedly that slow isn’t always better. Didn’t have fast and you know what they say about the grass always being greener. However, with slow I really believe you end up with PTSD. I feel like I have it.

Jrzygrl - please know I’m here for you, hugging you and holding you. You are doing an awesome job, even if you don’t feel like it.

I also hate that question of “how are you doing”? It doesn’t end when they pass, it just takes on another meaning. I skipped Church last week because I just didn’t want to be bombarded with that question from a lot of people yet again.

I agree, I may start using life s*cks, because that’s the truth and maybe they will quit asking.

Hugs,
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,614
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
As far as the question “How are you?”, you can always say “fine”.

“Fine” stands for
F**ked up, insecure, neurotic, and emotional

What I hate almost more is people who see me telling me I look good. They don’t realize that failing muscles don’t have a “look”.

Anyway, sorry to interrupt the CALS thread.

You CALS are awesome and I totally get what you’re going through.
 

Jamesgol

Active member
Joined
Dec 21, 2018
Messages
38
Reason
PALS
Diagnosis
12/2018
Country
US
State
OK
I am a PALS. I've lost the use of my legs, but have the use of my hands and arms. I have no bulbar involvement yet. Today, my first wheelchair is arriving, along with a hoyer lift.

I am lucky, in a way, that my caregiver-wife is also an NP. I defer to her completely, except as to issues personal comfort. But, that doesn't stop her from getting frustrated. I feel her frustrations are more caused by our situation than me personally. Bottom line is, this is not what she was hoping for in her retirement, (we are both retired). She has had to adjust to the same limited horizon as myself. This disease, ALS, happened to both of us.

I have always told her I want her to be as happy.I have never wanted to be an obstacle to her happiness. Not before ALS, and not not now. I feel bad that I am now the cause of her unhappiness and frustration.

James
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,881
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
I'm afraid all CALS end up with some degree of PTSD and it is not in any way related to how long they were a CALS.

Hope being able to open up here has helped release just a little pressure for you Jrzygrl even if we don't have solutions we get it.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
345
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
Jrzygirl and Sharon, I agree, slow progression is its own form of hell. My PALS is a very slow progressor, we've been at this 3 1/2 years and I just hope I have the stamina to go another 10 as it gets worse and worse. He has been moaning and sighing a lot lately, not sure if that is a sign that he is having trouble with breathing or not. We go in next week for a pulmonary function test and our first clinic visit on the 26th. He has lost 25 lbs and says he doesn't have an appetite. And like Karen my PALS gets the "you look good" a lot. They should see him without the baggy clothes.

I have a friend who said "well, you're not going to do the caregiving yourself, are you?" Even now I am trying to be patient while listening to him complain about what he would be doing if he weren't ill, giving injections of methylcobalamin in the faint hope that it will slow things down, taking calls from doctors and nurses regarding Radicava (he doesn't want to do it if he has to go to an infusion center), helping him dress, tying his shoes, putting bengay on his back nightly, giving massages, doing 100% of the housework and household management. Going shopping for a lightweight wheelchair this weekend just to help him conserve energy. OK, I am not yet toileting or bathing as you are. Not tube feeding yet although it's probably on the horizon if he can't manage to eat enough.

So I understand the fights. I've been having fights and saying the wrong thing about every day. Not sure I'm really cut out as a caregiver but there is no one else (he didn't want kids, not that I would have wanted them to go through this either) and his sister has checked out of the situation. We are both frustrated and I end up apologizing a lot. I've got a long road ahead as well. ALS is just a bucket of sorrow for all of us.

I agree Karen. How are you? FINE.

V
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,614
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
vltsra, I hear you on always apologizing. I call this the disease of a million “I’m sorries”.

I’m always telling my CALS I’m sorry, and I am. I never would have wanted for her to go through this.

The tension seems frequently to lead to misunderstandings and miscommunication. Sometimes that results in yelling and saying hurtful things. This disease doesn’t always bring out the best versions of ourselves. There is no template for how to go through this, few guidelines, no precedent.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,881
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
People, when they infrequently did visit (my PALS isolated us both quickly, and people are happy to run), would turn to me and say - "he looks really good!" Always made me feel like they were saying - it's not really so bad after all, I thought he was dying.

I would think, you didn't see the 3 hours it took me to get him ready to sit propped in his recliner looking like this and he now won't move til you leave. Then all hell will break loose as he will need 2 hours of constant stuff to make up for sitting there for your one hour visit... yep FINE ;)
 

Thomas933

Active member
Joined
Dec 4, 2018
Messages
90
Reason
CALS
Diagnosis
12/2018
Country
Uni
State
RI
I'm sorry. I get this question a lot, too -- it's difficult not to say..."well despite the fact that my husband has a terminal illness and facing the reality that he will, if he is 'lucky' only slowly lose the ability to do everything he loves while I will helplessly watch my boys lose their father and then reach the time when I lose him," WE"RE FINE. Everything is great, It's cold and how about them Sox....

I have nothing to offer except understanding and respect for where all of you are with ALS.

I try to focus on my anchors (what grounds me) on "bad" days and then I put my anchor down and try to hold on until the immediate storm passes. You are strong because you have no choice but you are still strong.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
554
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
Thank you all for your support. There' just so much hurt and guilt that goes with this beast.

Yesterday was a little better, as his aide was here and I got out a bit. I thank God for her. She has the patience of a saint and having her has helped me keep my sanity. She's only here 10-12 hours a week, but I also realize that's a lot more help than others get.

Night time continues to be difficult, but at least he slept well last night. But today has been what I have dubbed one of his "Diva Days". Request upon request sometimes in rapid fire. Earlier, he asked for 3 different things at once. I asked which he wanted first. He said, "Well, that's a stupid question, I want them all." Didnt matter that the 3 things were in 3 different directions. And so it goes...

I can relate to so much of what you all have shared - being emotionally dead, when will this end, will I ever find me, I love him and miss him at the same time, and the 3 hours before "looking good" and repercussions after. Thank you for making me feel a little more human and not so much monster.

Or maybe we should all just embrace it and join Lady Gaga's Little Monsters! Love to you all!
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,881
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
It's so important to realise we all feel those very same things - sure does normalise us all. Normal people coping with extraordinary situations!
 
Top