working still?

[tinyandme]

Evening all,

Just wondering if:

1. Any CALS still working full time and if so how do you manage it all?
2. Any Canadians here? And if so do you work? Know how system works i.e. staying home to care for lived one full time and still pay the darn bills?!

Thanks everyone!

Amy

 

[affected]

Hi Amy,

I work for myself, so I'm very lucky in one way.

In another way it is not so good as it is seen that if I am home, I am fair game for being called to attend to needs. When I do go out to work, of course I leave at a certain time and don't return til a certain time and that is accepted (with carer staff here in my absence).

I can't take all my equipment and office away to work, and I can't go out every day anyhow.

My work is suffering, I simply can't do anywhere near the amount of hours needed, and my work needs my close concentration for good lengths of time. My clients are incredibly understanding, but they also need me to meet deadlines.

It's TOUGH!

 

[Santa joe]

I quit work 2 years ago to care for my husband. I applaud those of you who work. It must be very difficult to say the least. I miss the people so much as I am very much a people person. Being home 24/7 has been a challenge. Watching my Pals go through this day in and day out is overwhelming. I am lucky in a way to be able to stay home but unlucky in so many other ways. I admire you CALS working - I don't think I've got what is required mentally anymore to work.

Debbie

 

[PennyX]

Hello! I am still working full time and believe me it is very rough. I getup early take the dog out for her walk get ready for work go pickup his 91 year old mother. she is my only help right now. after work cook dinner take MIL home take dog out again by this time i am exhausted and do only what is necessary to get by. my weekends are so stressful trying to get things done i am nonstop running around the house doing all the usual chores plus shopping for meals actually glad to get to work monday for the rest!
my husband is still able to walk but is weak his hands and arms are really bad i expect eventually to stop working then i think i wont be so tired and stressed out but then as u say how to pay bills? hopefully money we saved will last if we are careful its all so distressing I apologize for venting I know this didnt answer your question but it should give you an idea of how tiring it is

 

[Barbie]

I work full time at a business my husband and I own. it is very hard, but better since I am the boss and can stay home if he needs me without any fear of losing my job.

on one hand, I like getting out and away from ALS and we need the money, but on the other hand I am exhausted all the time and have to pay someone to care for him so my income is compromised.

What ever y ou decide to do, it isn't set in stone. this disease is always changing and you just have to be willing to change too. depending on your situation, you may have to continue to work and that will be the best option but in other cases staying home is the only option and the best one for both the pals and cals.

 

[affected]

oh yes I would add that whenever I'm working I actually feel 'normal' ... (more or less)

 

[tinyandme]

Thanks everyone! We have a psw now 3 days a week, 2 hrs each time for respite type care while I'm at work. Other days I beg a friend to visit to make sure hes ok. Cant imagine what i'll do when he gets worse..we barely make ends meet now, w/o me working ft we'd be homeless pretty soon.

Hate to be negative..but how the heck do we manage this?! Atleast here most healthcare is free..cant imagine in U.S!

 

[SMP51]

working about 30 hours a week here. very close to home, under a mile. between a young adult kid living at home and near by family and friends we are doing ok. It is quite the balancing act.

 

[zoohouse]

I am so sorry that it is so financially difficult for you. I am Canadian, and had to take a LOA to care for my husband who is almost completely paralyzed. I am ER nurse, so it has helped me with what I have to do here, but I could not keep working. I did have someone come in for a few months so that I could continue to work, but found myself on the edge of making medication errors, and was always second guessing myself. Then I would get home and nurse my husband through the next 16 hours, which meant I wasn't getting a full night sleep. I was exhausted, and irritable with him, and disorganized and not efficient at work, where a mistake could mean a life. Thankfully, my husband is a veteran so has a very good compensation package due to his ALS. He has his Social Security, and long term benefits as well, so we can afford for me to stay home. I have applied for long term disability as stress being the cause, and am waiting for the final word. I am his sole care giver, and don't get out much, but have always been a homebody. I wish I could be of more help, I have often thanked God that we have been able to afford what we do. Talk with your community care nurse, about what may be available, and a social worker. Different provinces have different funding available.

Paulette

 

[tinyandme]

Thanks zoohouse for your kind words. Not sure there but disability here very difficult. Odsp wont give him $ b/c they only allow a couple $1000/mth, since i make over that hes ineligible. Cpp gives hime a big $530/mth, no benefits. Thank god for mine thru work. Hes not a senior, so none of that and job before illness was not a goid paying one with no sick benefits or anything