staying home / working outside the home

[codyclan]

S&S,
I see that you are in Fairfax Virginia. I am in Loudoun as a teacher and my husband is at the point where he really can't be alone in the house as he uses the bipap frequently and can't the mask on and off himself and is unable to transfer himself. He had a hospitalization in June. I spent much of the last school year piece-mealing care and using FML. I have learned a lot.

First of all, after the hospitalization, we ignored the hospital social worker's advice and pushed the doc to request 28 hours of care through Medicare--8 of that is skilled nursing, OT and PT, the remaining 20 is home health services which includes an aid who helps with bathing, the feeding tube and sits with him when I am at work. That leaves me with only 20 hours to cover privately and we have a wonderful church community that is helping with some of that and the rest we pay for privately.

Secondly, and I am assuming that Fairfax's policies are similar to Loudoun's, so I am not sure why you won't have sick leave to use. Our family sick leave bank, sick leave accrual and FML resets at the begining of each new school year. So I get my year's worth of sick and personal leave at the beginning of each year. I use intermittent leave so that I can fill in any care gaps and still work as much as I can and keep the paycheck coming.

Lastly, I treasure my time teaching for many reasons. Yes, I feel guilty, often, and he is absolutely the priority, but the reality is that his current status could continue for a long time, or not--there's no way to know. And we do not have the FTD component, so that is a different factor to consider. That said, I like my job, always have and he knows that. I find a great deal of support from my collegues and it is great to feel normal for at least a part of the day or week. I come home with interesting stories and am mentally stimulated which ultimately benefits him. Also, looking ahead, I think that going to work at a job I love, with a steady paycheck, in a school I know well, and with people I know and care for will be comforting for me when our situation changes. I totally understand your feeling that it is difficult to both jobs well, I feel that way OFTEN, but my admin is supportive and overall, for us, the pros outweigh the cons.

Just a few thoughts.

Tracy

I would be happy to discuss any of this information privately, since we are so close geographically. Just let me know.

 

[Golfergirl]

I too am in the same situation. I have been on an FMLA from my job and I have to return in a few weeks. I would like to retire early to care for my husband with ALS but I am too young for Medicare. I would have to purchase my own health insurance if I retire early. I have hired private caregiver but i feel as though I will be working only to pay caregivers. It is a very difficult decision, but I think I will have to retire as the stress of a full time job and being a caregiver is too much!!

 

[gooseberry]

There is no perfect time to get on fmla. I needed my job because I was 47 when my pals was diagnosed. I am at work 5 months after he passed wondering if I should have been home the last few months. You really need the conversation with your pals and to understand the finances.

 

[sunandsea]

Thanks everyone, for advice and thoughts. I wrote a long reply and lost it before posting so this will be a shorter version. My husband has been having some difficult days where fatigue, weakness, and confusion is more pronounced. I've decided to extend my leave for now and not start back when school begins next week.

I'm not sure how long I'll be out but it seems the right decision to be with him now. He can't really discuss it with me but did say he is happy I'm not going back right away. I must admit I have mixed feelings - including sadness to not be returning. I enjoy working and I'll miss the support and friendships at school. I'm cleaning out my room this week so they can use it and trying to not doubt my decision.

I know I'll go back at some point but do wonder under what circumstances. If he seems to stabilize I think I could. The school administration has been wonderful and very supportive and I know I am fortunate in many respects. Financially, we'll be okay for awhile and I'll keep tutoring. I just won't retire when I thought I would, once I do go back.

Still trying to get answers to insurance coverage.

Tracey - if you have a moment I would love to chat and learn more about your experience, especially with insurance coverage. (When I said I wouldn't have sick days to draw from, I just meant that I had used all I had when going on leave - they drew on those before going without pay (my choice). You're right - they will start accruing again - I just don't have any left from prior years. The fmla will be available again in April.) Thank you for sharing your thoughts on all of this. So many pieces to it.

I don't want to make the wrong decision and I know no one can tell me what I should do. It just helps to hear of others facing similar situations and how they think through it.
Thanks again.

 

[affected]

Good for you!

Of course it's only with hindsight that we work out whether decisions were the best ones or not ...

But your heart is in the right place, that's the important bit!

 

[sunandsea]

Tillie - I hope it was the right decision. I've been at school emptying my room this week and keep thinking it was a mistake. I'm an emotional wreck and can't seem to get on top of these feelings - I cried in front of a plumber today, at our house on a service call. (We had a flooded basement on top of everything this week.) They have filled my position already so there is no turning back. I think I'm panicking and overwhelmed. I have to keep reminding myself why I did it. Why I felt like I should be home right now.

Sorry, just had to share - it's so hard to not be upset in front of my husband and my friends have tried to be sympathetic but it's hard to understand, I'm sure. Yes, my heart is maybe in the right place but I'm so tired of making decisions and feeling like I made the wrong one.
Judy

 

[affected]

Big hugs sun, keep on sharing here how you are feeling.

I have learned to live by the motto "It seemed like a good idea at the time".

You know my Chris used to say "I'd rather regret doing something, than regret not doing something."

So you have done something, only time will tell if it was 'right' or not. That's not really the point though. The point is you had to make a decision, and you weighed everything up and made it. Try not to let yourself dwell on 'was it right'. Try instead now to focus on making the most of every day you have with your husband. None of us have the crystal ball to know the future, not for us and not for our PALS.

 

[gooseberry]

You can only make the best decision at the time with the info you know. Having no regrets about your hubby is important.

 

[SLAUGHTER1555]

When my PALS was diagnosed i was able ro work for a while but as ALS progressed i was using more fmla days. I am a school bus driver so i learned fast i could not drive and care for him too. I left work For one year as things progressed still. It was just me no real help i hurt myself constantly til hopsice came in. But thing's still was hard because i let my physical health lasp i had to make the decision for care facility and it was hard very. I am now in the process of returning to work and even with tjis soon as im done i go to tje impatient unit sit with him feed him and go outside. In my opinion if you can work keep working like a previous post said you will need the break. There is only so much tv you can watch so much house you can clean. For me only tending to him made me feel like i was losing myself. Now im getting some of that back with work plus my time with him is different. Not as stressed. We have other obstacles we are facing but things are a lil better for now.

Sun i do hope you figure it out even with all our thoughts and opinions and experiences only you know what you can handle and what you can take.one of the post said let go of guilt and they are so right. That was my biggest diwnfall and enemy smh. But the ppl here on the form really help me with that. At no point wny decision you make will be easy or feel good u fortunately. But you have to keep your health as well as his health in mind. You do matter and while we are not the ones with ALS it affects us as caregivers in a different worse way.

 

[sunandsea]

It's been awhile again since getting back here. Our plumbing problem turned out to be a major flood in the basement and it has certainly been a distraction from my decision to leave work.

Thank you, Tillie, for sharing what your Chris used to say about regret. It has helped me through many days. And thank you, Gooseberry (Steph?) - you're right about not having any regrets being so important. If able, I'll choose to be with him for now. I don't know how long this will be - we never do, do we? I may not be able to do it indefinitely, but I can for now.

My principal called today and asked if I wanted to come back early and it is so tempting. But it's a different position and wouldn't be fair to the kids (the first year in a new grade is challenging) or to my husband so I declined. I do miss work, I won't deny it. And it's frightening to think of all winter without that support and distraction. One day at a time, right?

Slaughter1555 - it sounds like you have found some much needed help for your husband and I'm glad. It also sounds like you made the right decision for your situation. Thanks for sharing your experience and perspective.

A friend reminded me that change is hard in any event and I will find a new normal to my days. I hope so. H is becoming worse and has started to repeat the same phrases over and over. I can't hold a conversation with him and he's remembering things from 40 years ago but can't remember our last anniversary. So sad.

Maybe it's a good thing that I have all these boxes from school to go through and our basement to reorganize so I can put it back together! Not the most important thing in my life right now but we can't live in chaos indefinitely. And there is definitely something to be said for distractions.

 

[affected]

Thanks for updating us, I think this will become a very important thread if you keep sharing.

I can't tell you how big I smiled when you said that those words from my Chris keep coming back to you. I think of those words often and I make sure I let them give some ruling in the decisions I make now.

Distractions - it may now be well worth you thinking of something you have thought you would do at home if you retired, and start doing it!

Good on you for not just saying you would go back to work early. Let this bit of time play out so you can make the next decision when it is time to make it. Day at a time, that's another great motto to live by!

 

[Nuts]

SS, I'm glad you've found the same comfort here that the rest of us have. It might be easier if there was one right answer for everyone, but there's not, and we just have to find the path that works for us.

Those walks down memory lane--I find myself having them about our first years together. Matt brought a comfort into my lift that I'd never really known. I was independent and self sufficient, but he made me feel cared for and protected in ways I never expected. Those are the things I'm remembering now as I do more and more for him. The wonderful thing is that I've found ways he is still protecting and providing for me. It helps to recognize them. His mental strolls seem to be taking him to his school days--the old neighborhood and old friends that he's connected with on FB over the years. Sort your boxes and enjoy the memories--it's what we have.

Becky