If I hate myself how long before he does

Blackeyes

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CALS
Diagnosis
06/2019
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CA
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SK
City
Swift current
I sometimes think I must be the worst person in the world. I get angry at all the changes my house has gone thru (petty) my life has been put on hold ((even more so pettiness). My husband is confined to his chair. He takes 55% of his daily intake thru the tube. He has no use of his hands as they have curled as well as his toes. He’s beginning to struggle speaking and all this happening to the poor man

I feel like I want to scream at him. He was given the tools to record his voice in case this happens. But he didn’t. I tell him to get a hold of his OT or dietitian and he instead plays his game or watches tv. He refuses to do anything for himself. When Covid hit and I was able to stop travelling for my job I became full time caretaker. Starting in April. I’ve had 4 days away since then other then running to grocery stores. I am not one to sit and watch tv all the time. I have a few hobbies that keep me sane however if I try I get the pout from him. So I stop.

I can’t even go to my own room and read a book without hearing about it. I was his everything before he was diagnosed and now.... at first I loved being home and taking care of him. Cooking and making sure he’s comfortable. Taking him for walks playing games..... now I Just want to be done and I hate myself for it.

It’s only been a year a bit since he was diagnosed disease spread so fast that he was in a wheelchair 6 months after diagnosis and the drs say it will continue to do so. And it breaks my heart cause he’s my best friend and i tell him everything but I’m so tired and bored and feel all I do is what he needs me to do and I’m loosing myself so I have this part of me that just wants it to be done.

And before you judge trust me I’ve said everything I’m sure others would love to say to me. I’m afraid that I won’t be able to give him what he needs anymore because Of this numbness I’m feeling. I am on meds for my moods and anxiety but they don’t seem to be doing much.

my question is surely there is someone who has had these feelings. I know I love him but right now I’m so overwhelmed with other feelings I sometimes forget that.

my friends say I need to get out more.... Covid makes it a little hard Winter is going to be worse. I’m used to working 10 hour days and then getting calls all night and days off. Now I don’t take them because i don’t want to enjoy that feeling of being a boss and running things when I am suppose to be here with my husband. I was working at home 4 days A week and then driving 2 hours for 3 days before Covid hit. It was doable and it gave me something just for me. Which allowed me to focus on my husband and still feel somewhat normal.

But since April....... I did all the work we needed to do in the house but now.... and I am tired of the pouting and sighs that I hear from the living room when I want to do something for myself in my room. I can takehim for a 2 hour walk. Sit and chat and the moment I stand up he’s giving me the gears for leaving.

I know I have repeated myself and I’ve rambled and maybe even said something that I didn’t quite explain well enough that someone may just tell me it should have been me. Not him. His compassion for people is mind blowing. Friends families. Strangers. It’s one of the reasons we fell in love. We had planned on doing more as we slowly retire. I thought I was made from stronger cloth and that my empathy for others was strong.

Now I’m wondering if I’ve just always been like this and didn’t Know it. I’ve tried to talk to someone but Covid makes it tricky and I really don’t know if someone Who doesn’t know what I’m going thru can honestly say whether I am truly a selfish and horrible person or someone has a solution on how to get my life on track again.

sorry for the novel and for making u read my ramblings.
 
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lgelb

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OK, SK, you are not the worst person in the world, and no one here will judge you. There is no CALS whose empathy for their PALS does not break down at times, and no CALS (or PALS) that doesn't have times of wishing it were over.

He does not hate you, you don't hate him.

You might consider a frank discussion with him and perhaps come to a consensus that you can take work calls, undertake hobbies, or read in your book, when he can do without you. If he is being unduly possessive, which I would define as saying he needs you when he doesn't, that might be because he's missing his own hobbies and pursuits, and so part of your agreement might be that you help him find a way to engage with some of those. Is there anything doable that he'd rather do than TV and gaming?

So you're on psychoactive meds -- is he? Does he want to be? It is worth talking about? Have you talked to your prescriber about updating your meds, if necessary, and/or counseling via telemedicine?

That he has not recorded his voice is not necessarily either depression or inertia -- it's also something you could talk about in the "can you tell me why" vein, but it's not uncommon and not having a synth voice that sounds somewhat like him vs. a synth that doesn't won't really affect his quality of life, so I'm not really sure that's the lead here.

Anyway, when you talk about being "like this," there's no "like this." You're still you, in one of the worst possible situations, soldiering on by yourself, pretty much, sounds like. And of course it's harder in the pandemic, when visitors can be death.

We're here whenever you need us.

Best,
Laurie
 

Nuts

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Littleton
My husband didn't record his voice. I was surprised, because he got on renovating the house early in the game--but recording his voice did not happen. He was brilliant with computers, but couldn't operate the eye gaze. Eventually his brain gave up on him. FTD can come on very slowly and the early stages can be hard to spot, but personality changes are a big hint. He is scared and helpless, and you are his lifeline--emotionally and physically. If he's dealing with cognitive changes he may not be able to process your needs.

BTW, no judgement here. What you are going through is beyond what most people can possibly imagine. Yes, to be honest, I did at times feel what you are feeling. I was able to step out of life and dedicate myself to him, for which was was grateful, and I had a lot of help, but I still felt what you are feeling. It's hard to admit, but please know that it's not abnormal.

For him, this is the rest of his life. He does not have an after ALS to look forward to--at least not in this world. It may seem at times that he retains compassion for everyone but you--please try to see that as a sign of his trust in you. I don't think it's unusual to feel under appreciated when you are your PALS' everything. We expect babies to be completely dependent on us, but when the person who is our strength becomes needy it is terrifying.

It sounds like maybe you are punishing yourself when you say about the phone calls, "Now I don’t take them because i don’t want to enjoy that feeling of being a boss and running things when I am suppose to be here with my husband." There is nothing wrong with feeling good!!! If you can handle the calls from home without neglecting him, please don't deny yourself something that makes you feel good!!! Retaining some connection with the outside world will help you return to it one day, and it's important that you plan for that day. It does not make you bad or mean that you don't love your husband. It does not mean you want him gone. It means that you respect the future you have left. Think of it as living for him and don't feel guilty about planning for your inevitable while caring for him during his.

You will find yourself. It takes time (I'm almost two years into my recovery after five years with ALS), but it will happen. You will not be the same person; this journey changes us--for the better, I believe. You will be stronger and have a changed view of what matters in life, and you will be able to create a new life for yourself. The time you are losing now is not really lost; it's reshaping you and preparing you for a new life going forward. Beating yourself up will only make things harder on both of you.
 

Jomeha

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Apr 4, 2020
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9
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CALS
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03/2020
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US
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NJ
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Ringoes
I read your post and heard myself and the conversation with my kids (all adults) last night after my meltdown. My Joe was diagnosed in March and now his speech is almost impossible to understand, he has lost almost all movement of his hands, and can barely transfer from the chair to commode with 2 of us holding him up for the couple foot shuffle. He gets all nutrition and meds through his PEG and uses the bipap intermittently. Every night its the choking scare with the cough assist/suction machine trying to help him. I can't remember the last time I slept through the night, beside the few nights he was in the hospital last week. He's a rock, and I'm mad at the world. I don't know how people do this alone. My 25 year old daughter is currently unemployed and my other 2 are back and forth between college and a full time job. It honestly takes the 4 of us. I miss him, I miss the life we had, and I grieve the future we had planned. I can't help but look at him, look back 6 months, and wonder what's next, how we're going to handle it, and how much longer do we get to keep him here with us.
 

Bestfriends14

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Joined
May 7, 2017
Messages
950
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Hi SK from AB,

I have all the feelings you are having. In fact, the last week has seen a huge growth in progression and we now use everything to help my husband as he cannot walk, toilet, or bathe himself. He is on bipap/ventilator about 20 hours a day, and without it, I can hear him struggle for breath when talking, or really doing anything.

It's been such a roller-coaster of emotions that I had a complete meltdown two nights ago and ended up yelling at him for continuing to try and rearrange the sling while he's in it. I start my masters program this weekend, and will need to dedicate 4 hours a day, each Saturday and Sunday. I'm scared I will not be able to do that and take care of him at the same time.

I'm scared of the future, and I grieve for the past we barely had together before he got diagnosed. It's funny, but I was going to write a similar post to yours and decided to respond to your post instead. You are not alone in your feelings and I'm glad to see I am not either.

Hang in there.

J
 

vltsra

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Joined
Nov 12, 2015
Messages
448
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Dear Blackeyes,

First of all there is no judgment here. You are welcome to come and vent.

ALS is a terrible beast and COVID-19 has not made the situation better. All of the things that counselors tell us to do are off limits now - get together with friends, do activities for yourself, take care of yourself. I used to occasionally get a massage...no more. I used to go out for a ride with friends and get together for lunch. No more.

Is there a way you can get help? We are fortunate to be in a position to be able to hire a caregiver during the week. I know I do not have control over where she goes when she isn't here, but I am hopeful that she is being careful. It allows me to continue to work (part time), pursue some of the things that feed my heart, and get some exercise. My PALS has been very supportive of my doing this.

It is still a heartbreaking disease. We have been living with ALS for going on 5 years now. I've seen people that I started with on the forum come and go as our ordeal continues. My PALS is confined to wheelchair/bed, cannot feed or toilet himself, is on bipap 24/7, and can no longer feed himself and is having difficulty eating. Worse, he cannot pursue any of the things he previously enjoyed. I have had numerous meltdowns in the course of caregiving, and felt like I, too, was the worst person in the world. I finally sat down with my husband and told him that I love him but I hate ALS, and I'm very angry with ALS for making us both be like this, so when I get angry it's with ALS and not with him. He understood completely. He is angry with ALS too.

ALS often brings me to tears as well. I cannot imagine how frightening it must be to be inside his failing body. He is sad and frustrated lately as his speech is starting to fail him and he is often exhausted. I have been trying to take him on an outing somewhere every week if possible but at times it tires him out more. At any rate I think I have reached the "Acceptance" phase; things that I could not have imagined seem normal to me now,

Any time you need to vent we are here.

V
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
630
Reason
Lost a loved one
Diagnosis
08/2014
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US
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NJ
City
X
This disease asks for every single ounce patience, compassion and energy you have. And when you give it all, it just asks for more.

You are not the worst person in the world. He does not hate you. Please don't hate yourself. Those of us who have also walked this cruel, lonely path are with you. Hang in there.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
159
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
SK,

Sorry you have to go through this, and the constantly changing difficulties. I, like, V, have been a Cals for a while. Starting our 7th year. Doing things I never imagined. Constantly grieving what we have lost. Don’t feel guilty, you are being faced with a situation very few comprehend. I feel guilt (which I know is irrational) and wish I could do more, but we are human and have limits. I am finally getting to a place where I realize that and don’t beat myself up for things that are the illnesses fault, not mine. Of course you are tired and discouraged, all the more reason to, when you can, read that book, answer the call if you want, without guilt, you need it.
Vent here anytime,

Annie
 

Blackeyes

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Joined
Jul 7, 2019
Messages
26
Reason
CALS
Diagnosis
06/2019
Country
CA
State
SK
City
Swift current
It took me till now to come back. I was afraid of hearing confirmation of what I was feeling about myself. Thank you all for your support and kind words. I wish we didn’t need to be here in this forum. I wish we still had the lives we planned. I wish the future didn’t feel like a black hole waiting to swallow everything we have and are. I wish we hadn’t worked so hard the last few years so we could pay everything off and then slow down putting off holidays and things we took for granted would still be there in our 5 year plan. I wish everyday didn’t start with a prayer hoping today was going to be a good day for him. I wish my nights weren’t full of tears and hopelessness. I wish I didn’t have to watch him loose himself everyday knowing that time was not on our side. I wish I didn’t feel so much anger at a god who would take away someone who gave so much of himself to everyone who knows him, while pedophiles and murders fill our jails. I wish that I would just wake up and feel numbness instead of this horrible ache that consumes me some days that I can barely breath. I wish this forum didn’t have to exist but also very thankful that it does.
Thank you for understanding what I’m feeling and I’m truly sorry that you do. This disease doesn’t just progressively take away our loved ones. It tortures and steals their bodies along the way.
They don’t have a chance. There is no drug or therapy that may put the disease in remission. It’s a death sentence from the word go and all anyone can do is watch them suffer. It’s heartbreaking and I honestly don’t know how to get thru it. I always thought I was a strong person but now I feel like a strong wind will break me. Trying to help him and the kids and grandkids come to terms with it when I haven’t...... Sometimes I wish I had just decided to be spinster. :)
 
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