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Elizabeth555

New member
Joined
Aug 14, 2008
Messages
6
Reason
CALS
Diagnosis
08/2008
Country
US
State
OH
City
Akron
Hi everyone:

I was hoping some of you could share your experiences/stories about working (or needing to stop) while caring for your PALS.

I work full time and my husband has had ALS for just over two years. We have a group of great caregivers, but his condition is deteriorating to the point where I think he will be bedridden and unable to walk soon. When this happens, I will lose several of my caregivers for various reasons. I have tried to "solve" this problem, but keep coming back to the fact that I may need to stop working to take care of him myself, which will be very hard financially on us, but is probably the best choice.

Anyway, I would love to hear your situations and/or stories about what happened to you and why you made the decisions you did. Did you stop working because you decided to, or did you have no other choice?

I would also like to mention that flex time or special accommodations by my workplace is not possible.

This forum is great and I look forward to hearing about your experiences and advice.
Thanks
 
Hi, I was laid off before my husband was DX, and get unemployment. Is there anyway you could get laid off? When my unemployment runs out, I probably will not go back to work. What about taking family medical leave, you wont be paid, but you will have your job back if you later realize you want to continue working? There is also a chance that the company will give you leave, then if you decide to go back, your job is no longer available, and they have to lay you off, then you can get unemployment. Also, Food stamp laws have changed, and assets are not counted as heavily as they used to. Good luck, and if I can be of any help, let me know. HUGS Lori
 
I took a "leave of absence" last April to care for my Mom full time. It has turned into a "quitting" my job. I love being able to do this. It is hard on us finalcially and there are times whenI would welcome a job so I can get out of the house but Mom is such an inspiration to me I would have it no other way. I used to have a helper 2 days a wek but I had to let her go. We just couldn't afford it.
 
Hi Beth!

Sorry you are having to face such a decision.

I was a stay-at-home-mom when my husband was diagnosed and a year into it I tried to work part-time. That lasted about one month. The issues my husband had back then during the night kept me awake and I was burning out quickly. There is no way I could work now.

Have you gotten with the ALS Clinic about ordering Hospice care? That might be an avenue that could allow you to keep your job.
 
I have been very fortunate. My company allows me to work from home so that I can take care of my husband. I have two sons that have moved back home due to their not being able to find work. So I told them both that they have to get up with their dad during the night when he needs to get up. I take care of him during the day but I rely on them to be close by in the case that my work interfers.

I hope it works out for you.

God bless,
Aleta
 
It's a really tough decision as it can be hard to forecast a time line and I know you need to be practical. So sorry you are dealing with all of this
There really are day's were I miss having a job just for a reason to leave the house. There are days I want to rip my hair out. How ever by taking care of her I have gained something I can't quite explain. At this point cuddling and laughing with her is the most amazing feeling in the world.


Are you able to access hospice services? In our case they provide 8 hours a day they give her a bath and the hospice nurse is phone call away. We are super lucky.
Do you have people around you that may be able to just 'be there' to do the super easy stuff for a few hours?
Remember to take care of your self too!
 
I hope that I am a long way off from having to make this decision, but I don't doubt it will arrive some day. I do have an option for reduced pay with FMLA when that day should come. Though I think I'd prefer to work part time if that were possible (still gets me out of the house).

Elizabeth, its surely not going to be an easy decision for you. Have you approached your employer about your options? They may be surprisingly accommodating. You need to know your options and ask for what you want. If they say no, they say no. I learned a long time ago you cannot have what you don't ask for. Good luck!
 
Elizabeth-
My husband was diagnosed 3 years ago and has been unable to walk or use his arms for about a year now. I still work full-time. Taking a leave is really not an option for me. We would lose our house, and we have two kids in school. We do not have home health care, so I get my husband all ready for the day before I go to work. He spends the day in his wheelchair on the computer and his parents stop in to do a feeding tube over lunch. His doctor does not like that he is home alone, but it is working for now. I don't know what we'll do when he can't be home alone anymore. We are taking it one day at a time!
 
I am so sorry your in this position. My hubby diagnosed October of 2008. I was working at that time, but due to his not being able to use his hands and arms, not to mention the balance issues, our neuro said "NO WAY CAN HE STAY BY HIMSELF" Instant problems. We lived for 4 months without any income at all. It wasn't easy but we made it. I now understand that there are alot of things that we want and a lot less that we need. I was feeding a family of 4 on 100.00 per month. Nobody starved. lol. If you have to quit work, you have to also trim the fat. Go over your finances and see what you qualify for thru the government. Job and family services. ALS sucks
 
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