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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.
 
Sunandsea - Some things for you to check into is whether your insuance would cover the caregivers. I do work outside the home and have since this mess started. DH was able to work the first few years until he was trached and vented 6 years ago. It's the insurance from work that allows me to continue to do so. Ours will cover Private Duty Nursing and since he is trached and vented I can only get nurses through an agency, I cannot just get an aide which would be less expensive. I am able to get 10hrs 5 days a week. The rest is on me, but that allows me to work and of course creates our income.

Hospital stays are not something you can predict. If we get through the end of Aug, we will have gone 1 full year w/o an admission. Prior it's been about 1x a year for pneumonia, none in the first 18 months of the trach.

I say, if you can get some hours via your insurance, that should help and would offset some of the cost. Also, here in the US, the cost of nursing that you pay out of pocket is considered a medical expense and is deductible on your taxes based upon the medical exp % just like any meds etc if you meet the threshold. While it doesn't recoup everything you spend, it can certainly help. Your accountant could give you an idea of what that would be worth.

If you hire someone yourself, that can also possibly reduce the cost as you are just paying salary and taxes and not the extra amount that the agency charges. For example, I believe the agency charges me $45/hr, but the nurses get about 20-22 of that amount. If I could no longer get nursing through my insurance, I would see if I knew someone whom I trusted. I did have to do that for a while and was able to pay less than even the 20/hr rate in that I did not have to hire a nurse. I could train whomever I liked to do the work, just like we have learned/been trained ourselves. However, you are responsible to pay all the employment taxes and run it like a business.

I hope this helps,

Sue
 
Sue - thanks so much for the information and taking the time to write. I'm clarifying our coverage with insurance but it's been my understanding that it will cover 3 months care and I was holding off on claiming that when we needed more skilled care. He isn't on a trach and needs more companion care than nursing.
I know agency care is more expensive and I went with that for the dependability last year but that didn't always work out to be more dependable. I thought this time I would go the private hire route and learn about meeting the tax responsibility. Fortunately, we were able to deduct a percentage of the cost of the caregiver on our taxes last year - which helps.
I'm so torn about staying with him and returning. I think I will feel guilty whichever way I go - if I return and leave him and if I stay and don't bring in that income.
Many thanks again.
 
A true rock and hard place decision.

If we knew how long they had we could make informed decisions but we just don't know. I do feel that you need to try and take guilt out of the equation - you are going to make the best decision you can with the information you have. If hindsight shows a different decision would have been better, you will have to deal with that then, but it's all we can do.

I hope you can make the decision and feel settled in your heart about it.
 
Sun - you are welcome. Yes, agencies have their issues as they don't pay nurses well enough to work standby. If you get a caregiver, many times they don't have anyone else available and trained if your regular calls off. We've been through that as well.

One thing to consider is stress. I know for me, while work is stressful and trying to balance both work and home life can be hectic, being able to get out of the house a few days a week definitely helps me deal better at home. The only time that was not true is when DH wasn't sleeping at night and I was up almost 24/7. Then everything was additional stress. Going to work allows you to see and talk to other people and almost forget about home for brief moments. I said "almost" because you don't forget, but you can kind of not think about it a little.

When DH first got his trach and vent, I did all of his care and did not work outside the home for 9 months. I did my work from home. However, I don't truly have a job that can be worked that way and it wasn't working. That's when we decided to get help in, and I'd go back to the office. I cannot tell you what that interaction did for me. I was so sick of watching TV and trying to do regular tasks after my DS got home from work or my DD got home from school. In the time since DS is now married and DD is done with college. It's tough being the only one in the house and at times a little scary too.

Only you and your DH can make the decision that is right for both of you. I can only share my experience. And as Tillie said, hindsite is 20/20, but you can't think about that because there will always be a what if and you can never guess what life would have been like with the opposite decision because you'll never really know.

Hang in there and I'll be praying for you to make the decision that is right for you.

Sue
 
Hi, Sun,
If he does not need skilled care (well, even if/when he does, but that's another story), it seems silly to go through an agency. You can get someone more reliable for less. I would explore what the possibilities are -- post on campuses, craigslist, local bulletin boards, etc. and see what the cost will be vs. the income your job provides, factoring any benefits in.

In terms of hospitalization, knowing the past circumstances would enable us to have better crystal balls -- sorry if you previously described this -- and his current status? But with respiratory support, nutrition, hydration at an early to middle stage, there should not normally be any that are ALS-related absent pre-existing conditions that exacerbate its effects.

Best,
Laurie
 
If you've not considered teaching online that is an option. I do not see that you've stated what grade you teach. In NC there is NC Virtual Public School. It is predominantly high school courses with some middle school. There is also k-12 which is a national program. I teach for NC Virtual Public School. I like it. It gives me flexibility to care for my husband. We do not get benefits as teachers so that is something to consider. I'm not sure if k-12 offers benefits.

I've been teaching online for four years. Generally it works out well. I was going to stop this year because it seemed like it was becoming too much of a challenge with my husband's increasing needs. A few issues convinced me to return - we will have an aide come for a few hours a day, I like that my work it gives me something else to focus on other than care giving throughout the day, and when my husband dies I will need an income.

I wish you the best in your decision - it is not an easy one to make.
 
SunandSea, I had stopped working to care for my mom when my husband was diagnosed. I had expected to be home with her for a year while she recovered from a broken hip, but her needs became permanate. At first I was thankful that I was able to be home with my husband, but as he progresses and becomes less mobile, I plan to spend more time outside the house. He's planning for a vent and trach, so this journey could be a long one and I need some time away from ALS for my own health's sake.

I wish I had a crystal ball.

I think you do need to keep your long term future in mind. How reduced will your retirement benefits be if you stop work now? I'm already ineligible for disability benefits because I haven't worked and paid in over the past 5 years. That's not a problem, right? After all, we don't need my income now. But what about the cost of additional help if I"m hurt? And what happens if I lose him (and his income, which is the majority). Because I've been a full time caretaker for my family members, I won't be eligible for SSDI. I do have other income, so this isn't a huge concern for me, but other CALS aren't so lucky.
 
I love the idea of on line teaching--at least for this year. or perhaps talking to your principal--maybe you could teach part time? or team teach? IDK, it is so tough to decide.

I continued to work the entire time my husband was ill. though I was lucky we owned our own biz so I could leave work anytime I needed to. I also had caregivers that came during the day -- got them on Caredotcom and only cost me about$12/hr. I was lucky--we hired two ladies in the course of 5 years and they were both amazing and loving and dependable. At the very end of his life, I still worked every day because I just could not see that we were at the end.

I think working is helpful to you not just for the financial help but also so you have a life outside the ALS cave. caregiving full time as you know is brutally hard. the good thing is though with teaching you could go back any time and you can never have this time back with your pals.

hugs.
 
Just remember that family medical leave can be taken as needed. You don't have to continue it.

I've worked as an administrator and faculty albeit in a college. I think the best strategy is to have a sit down with the principal and figure this out together. You might want to request someone from HR to address the benefits. Perhaps they can arrange a leave of absence or some other accommodation. I would start the school year and request the meeting during planning.

Online teaching might or might not be a possibility in your school or even in your district. It's tough to work from home, too. I taught 100% online, mostly from home, during the past 10 years and I put in way more hours than when I taught in the classroom. Teaching K-12 is MUCH more demanding than teaching at a college, though, so I understand how you have to weigh all the pros and cons and that finances might very well dictate your final choice.
 
Thanks everyone for your replies and advice. Sorry, I haven't been on lately because I haven't been well and just coping with taking care of my husband. I'm not sure what I'm going to do about work but am leaning toward not going back right away. I'm a special education teacher in an elementary school. I have started tutoring more this summer and I think I can continue to do that and increase the number of students I work with this fall. They come to me and the families are wonderful and understanding. I do miss the interaction and support at work but this at least gives us some income and allows me to be with my husband right now. I wish I could do something online and will have to look into that. It's true that a diversion from caregiving is really helpful as well.

Laurie - prior hospitalizations were from a fall in which he broke a bone in his lower back ( fell when alone) and when he had pneumonia.
His last pft was 69, down from 88 in May. He isn't using the bipap as much as he should and while he can still eat everything, he is starting to find it difficult to drink liquids. He doesn't have a peg and doesn't want one. (This brings up all kinds of other concerns....)

I've mentioned that he also has ftd and so becomes confused and forgetful. This, as many of you know, is harder in some ways than the other effects of als. I feel like I have limited time with him before he forgets who I am or where he is. It's happened already and I'm sure it can happen again at any time.

I did ask for an evaluation of retirement benefits and am waiting for numbers. That may decide for me and if I need to go back, I'll look at alternatives to agency care. I just wish I could find one good caregiver that he would enjoy being with. I did talk with the principal and he is being very understanding but would like a decision soon so he can fill the spot. I understand that. I probably shouldn't have left last April but it seemed like the right thing to do at the time. He did improve so perhaps it was.

This is so hard. I love him and want to make things better for him. But I find when working, I didn't do my job well and I didn't care for him well. I don't know why I think it will be different if I try again. When I go back, I won't have any sick days to use for awhile so I need to be in good health as well.

Many thanks again, and my apologies if I didn't answer questions. So sorry if this is rambling - still on some pain meds and very tired but wanted to check in. I do appreciate all of you and your responses.
 
Sun sorry to hear you have been unwell.

It's such a fine line, when to stop work.
 
S&S,
From what you describe, my best guess is that you will want to be around to at least direct his care.

Best,
Laurie
 
Thanks Tillie and Laurie - it is hard to know what to do. Some days he is doing pretty well and then other days he's very weak and disoriented. He doesn't say much and it's hard to know what he is thinking most of the time. I wish he would give his opinion and we could make a decision together but those days are over.
 
I wish he would give his opinion and we could make a decision together but those days are over.

It's extra hard when we feel we have to just work it out on our own and magically make the right decision xxx
 
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