MrCrumbs
Member
- Joined
- Oct 25, 2016
- Messages
- 28
- Reason
- CALS
- Diagnosis
- 09/2016
- Country
- US
- State
- Kentucky
- City
- Somerset
First off, hello everyone! This is only my second post to the ALS Forums. I have read/lurked a bit over the last ~6 months, but have stayed quiet while trying to process everything going on around me.
To sum up my story as a "caregiver"... My beautiful wife and I married back in 2014 and had our first and only child in Nov of 2015. In May of 2016, she started having some weakness in her arms and trouble breathing. After a couple of months with no improvements, we decided to have her checked for ALS. Now, normally ALS wouldn't even be thought of, but it runs in my wife's family. She lost her dad when she was about 5 years old. He was 29. In total, there have been 32 ALS cases in her family (8 more unconfirmed) since roughly 1860. After 2 specialists and a genetics test in October of 2016, it was confirmed that she has ALS.
Since then, life has been rocky... My wife is a stay at home mother to our daughter. I also work from home, which is a major blessing. I don't have a set schedule but I do have several meetings through out the day. I spend my nights now doing my "busy work" since my days now consist of help my wife and tending to our 17 month old daughter. I average about 4 to 6 hours of sleep a night... but I lately, i'm exhausted. Worse than the physical fatigue is the emotional factor. My wife seems be getting more and more angry. I don't blame her, but I get the full force of it. When her mom stops by for a visit, she sometimes leaves in tears because of how cold my wife has become. It is 100% pride! She refuses to have anyone help her even though I have to help her do a lot... Dress, bathe, stand... I have begged her to let someone help us with the normal, everyday things around the house... to take some of the weight off my shoulders. Working, being a caregiver and doing everything around the house... trying to sleep... I feel I am about to lose my mind.
So, instead of working, I have decided to start figuring out how to bring some joy back into our lives all while not neglecting anything around the house... So, thank you all for being my source of truth and ideas. I really feel that my health has slipped lately. Chest pains, headaches, all of the above... How do you convince someone to let someone help out? I can understand not wanting to put our daughter in daycare.. She doesn't want to miss out on anything.. But is a couple of hours twice a week really missing out? And what about the anger and depression? I don't want our remaining time together to be like this.. No one likes fighting with someone they love. I honestly feel like she's purposely pushing me away...
To sum up my story as a "caregiver"... My beautiful wife and I married back in 2014 and had our first and only child in Nov of 2015. In May of 2016, she started having some weakness in her arms and trouble breathing. After a couple of months with no improvements, we decided to have her checked for ALS. Now, normally ALS wouldn't even be thought of, but it runs in my wife's family. She lost her dad when she was about 5 years old. He was 29. In total, there have been 32 ALS cases in her family (8 more unconfirmed) since roughly 1860. After 2 specialists and a genetics test in October of 2016, it was confirmed that she has ALS.
Since then, life has been rocky... My wife is a stay at home mother to our daughter. I also work from home, which is a major blessing. I don't have a set schedule but I do have several meetings through out the day. I spend my nights now doing my "busy work" since my days now consist of help my wife and tending to our 17 month old daughter. I average about 4 to 6 hours of sleep a night... but I lately, i'm exhausted. Worse than the physical fatigue is the emotional factor. My wife seems be getting more and more angry. I don't blame her, but I get the full force of it. When her mom stops by for a visit, she sometimes leaves in tears because of how cold my wife has become. It is 100% pride! She refuses to have anyone help her even though I have to help her do a lot... Dress, bathe, stand... I have begged her to let someone help us with the normal, everyday things around the house... to take some of the weight off my shoulders. Working, being a caregiver and doing everything around the house... trying to sleep... I feel I am about to lose my mind.
So, instead of working, I have decided to start figuring out how to bring some joy back into our lives all while not neglecting anything around the house... So, thank you all for being my source of truth and ideas. I really feel that my health has slipped lately. Chest pains, headaches, all of the above... How do you convince someone to let someone help out? I can understand not wanting to put our daughter in daycare.. She doesn't want to miss out on anything.. But is a couple of hours twice a week really missing out? And what about the anger and depression? I don't want our remaining time together to be like this.. No one likes fighting with someone they love. I honestly feel like she's purposely pushing me away...
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