Blackeyes
Active member
- Joined
- Jul 7, 2019
- Messages
- 36
- Reason
- CALS
- Diagnosis
- 06/2019
- Country
- CA
- State
- 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.
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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