sunandsea
Distinguished member
- Joined
- Jun 17, 2016
- Messages
- 144
- Reason
- Lost a loved one
- Diagnosis
- 11/2014
- Country
- US
- State
- VA
- City
- Fairfax
I have a question that I'm sure many others have wrestled with and I would love to hear how you have come to a decision on it if you have. My husband was diagnosed almost two years ago, in the fall of 2014. I'm a teacher and he is retired. He was doing some contract work at the time but all from home and not many hours. My employment has provided the steady income and benefits (such as health insurance) for several years. The first year following his diagnosis, I continued to work and took necessary time off to be with him for appointments. It became very clear early on he shouldn't drive and he also had a difficult time sharing information with doctors and specialists because of problems with memory and understanding.
Because I'm a teacher, I was fortunate to have the summer off and then I returned for the 2015- 2016 school year. The ALS progressed and I arranged caregivers to be with him while I was at work. But I continued to take days off for appointments and if he wasn't well. He was hospitalized twice and the winter was particularly bad. We also had several different caregivers (through an agency) which was difficult. He seemed to be getting much worse in February and March and I was taking more time off than expected or sometimes I would need to leave early to check on him. The administration was very understanding but I finally gave in and started a fmla leave in April and took the remainder of the year off.
I am now faced with the decision of whether to return to work in August or extend my leave. I thought I would extend it but I've been questioning that. He sleeps a great deal of the time during the day and while I know the disease is progressing, I wonder if we could find good caregivers if they would be able to provide what he needs as I am. I wanted to be with him during this time but reality is that we also need my income and I don't have too many years left to work. I am so torn because he is more important than my job but I know a lot of people feel that way but continue to work and meet the needs of their PALS.
I wasn't aware of this forum until a few months ago or probably would have posed the question when I was struggling with it last winter. I'm concerned that I'll return and have a repeat of last year and need to be out a lot again. I don't know that I can expect the administration and those I work with to be as understanding a second time. But if I don't return at the start of the school year, I'm not sure I'll have my position when I am ready to. And if I don't return, we will continue to not have the income that could help us meet the expenses of this disease.
It's not clear-cut because we can continue this way and I'll make up for the lost income by working longer than I expected to - as long as I can physically do it. There are other factors involved that I can't explain in a posting that also make it more complicated (which I realize makes this question more difficult, I'm sorry). I guess my question really is how and when do other CALS decide to stop working to be with their PALS?
Btw, right now, I am the sole care giver for him. We have family that helps out some but only occasionally. The cost of caregivers made it such that I haven't hired any since being home with him. I know that will change soon as I won't be able to meet his needs by myself. I do worry about the cost of that. We have savings but not knowing how long we will need it makes it challenging. I want to provide for whatever he will need in the future.
Thanks for your advice and any experiences you are able to share. I want to make the right decision.
Because I'm a teacher, I was fortunate to have the summer off and then I returned for the 2015- 2016 school year. The ALS progressed and I arranged caregivers to be with him while I was at work. But I continued to take days off for appointments and if he wasn't well. He was hospitalized twice and the winter was particularly bad. We also had several different caregivers (through an agency) which was difficult. He seemed to be getting much worse in February and March and I was taking more time off than expected or sometimes I would need to leave early to check on him. The administration was very understanding but I finally gave in and started a fmla leave in April and took the remainder of the year off.
I am now faced with the decision of whether to return to work in August or extend my leave. I thought I would extend it but I've been questioning that. He sleeps a great deal of the time during the day and while I know the disease is progressing, I wonder if we could find good caregivers if they would be able to provide what he needs as I am. I wanted to be with him during this time but reality is that we also need my income and I don't have too many years left to work. I am so torn because he is more important than my job but I know a lot of people feel that way but continue to work and meet the needs of their PALS.
I wasn't aware of this forum until a few months ago or probably would have posed the question when I was struggling with it last winter. I'm concerned that I'll return and have a repeat of last year and need to be out a lot again. I don't know that I can expect the administration and those I work with to be as understanding a second time. But if I don't return at the start of the school year, I'm not sure I'll have my position when I am ready to. And if I don't return, we will continue to not have the income that could help us meet the expenses of this disease.
It's not clear-cut because we can continue this way and I'll make up for the lost income by working longer than I expected to - as long as I can physically do it. There are other factors involved that I can't explain in a posting that also make it more complicated (which I realize makes this question more difficult, I'm sorry). I guess my question really is how and when do other CALS decide to stop working to be with their PALS?
Btw, right now, I am the sole care giver for him. We have family that helps out some but only occasionally. The cost of caregivers made it such that I haven't hired any since being home with him. I know that will change soon as I won't be able to meet his needs by myself. I do worry about the cost of that. We have savings but not knowing how long we will need it makes it challenging. I want to provide for whatever he will need in the future.
Thanks for your advice and any experiences you are able to share. I want to make the right decision.