how can i afford caregiver support?

[BlueSeattle]

Hi all, I don't post here much. Due to the extremely slow progression of my wife's ALS not much has changed in the last year... We bought an SUV for her as we were told as it progresses it is easier to fall out of a car than clime up out of one. We've been looking at hand controls for when she can't use the pedals anymore...

First, after 5 years from her first symptom she thinks it's finally spread from her leg as her shoulder is hurting. I was hoping she'd just tweaked it as she's still a very active person... Last night she said she thinks it's the ALS as she doesn't think all the muscles are still there...:sad: I wasn't expecting the arm... I guess I was assuming the left leg would be next... She's right handed... And hand controls for the car seem to be made to operate with the right hand... What do we do here? Buy a British car?

Second... Something that has been bothering me for a long time. The slow progression is obviously great for now but in the later stages of this disease not so much... I'm only 30 and obviously work full time. I need to work full time for things like benefits, and basic living. I have no savings and we had to short sale my condo (3 stories so stairs and ALS don't mix) so my credit isn't pretty. Doing the math and some Craigslist searching it it seems to pay for a caregiver 5days a week for 8 hours a day would cost a little over 30k a year or $2400 a month. I make a good sum of money and could afford that and rent plus bills. That really doesn't leave money for other things like food, clothing or other things I'm not thinking about that my wife will surely need...

I have enough in stock and can cover this for probably a year.. I could suck it up for another year, but at my wife's progression rate when the time comes I'm probably going to need it for many more... how do i do this... Also I typically work 50-60 hours a week (I have not figured this into my equation... And this is not because I'm a workaholic... It's that's just software...) and manage teams of software developers... So working from home is an occasional luxury but not something I can do all the time. Maybe once a week at most. I could leave the company and find a job that lets me work full time from home but then I'd lose the great benefits I have and probably get paid a lot less. This option is on the table but there are risks that I don't think I should be taking here...

 

[BlueSeattle]

All that was typed on a tiny phone keyboard so please forgive the typos. Odd i've heard people say things like this before but it's the first time I've felt it. I actually feel better having hit the send button on that... May not be good news in the replies, but I still feel better after asking.

 

[Miss]

Did / does your wife work? If so, she qualifies for Social Security Disability Insurance Benefits. That could go a long way in helping to pay for caregivers. Do either of you have family in the area? good friends? Maybe they could help in the early days, and you could save your resources for later when the care is more intense. Talk to your ALS Association. They will have ideas for you, too. We're here for you guys whenever you need to ask anything!

 

[BlueSeattle]

Did / does your wife work? If so, she qualifies for Social Security Disability Insurance Benefits. That could go a long way in helping to pay for caregivers. Do either of you have family in the area? good friends? Maybe they could help in the early days, and you could save your resources for later when the care is more intense. Talk to your ALS Association. They will have ideas for you, too. We're here for you guys whenever you need to ask anything!

Yes, but she quit for non-medical related reasons... then stayed on for a good 6-7 months. During that time before medical benefits ran out she went to the doc and that's really where our ALS journey started. I'm not sure what she qualifies for. Since then she's quit. She tried to find another job for a while but didn't have much luck. She's been volunteering and doing some child care, but nothing serious.

Yes, we have friends and family in the area but everyone works and/or has young kids (we're lucky we hadn't started yet) so the 9-5 is really the trouble time. Even my parents still work. :-S

 

[HelenL]

Social Security Disability isn't about whether she quit working or not, it's about the length of time she did work. I believe it has to be 10 years but dont eally know for sure... I believe there is a stipend for caregivers in the benefits. Apply for it now, as she qualifies and would get benefits in 6 months.

Good luck, and stay strong... be glad of a slow progression, maybe there's a treatment around the corner.

 

[Miss]

You and your wife need to go to the social security office and talk to them. She should qualify. It doesn't matter that she stopped work for non medical related issues. If she has paid into the system, she has benefits. She should have SSDI benefits and be eligible for medicare which should pay the copays on your insurance. Good luck! I hope her monthly benefit will be enough to cover her care!

 

[Barbie]

You definitely have a lot going on and I can see how worried you are about the future. Missy is so right--first step is see if your wife qualifies for Disability. I don't remember the calculations--I know that stay home moms do not ( I don't and have a few more years to work before I do since I was home for 15 yrs) It may be on the ss website. look at the website, and make an appointment with her at the SS office. That can be a big help. you say she is still active and can still drive so it doen't sound like she needs full time care yet. You are right full time care is expensive and overwhelming but you may not be there yet. Perhaps start small--once a week house keeper or a homemaker assistant. I think that the step below CNA is someone who can do errands and light cleaning, and just general help around the house. I see ads in the paper for people like that all the time.

Try not to figure out every step now--you sound like you have time and things and circumstances can change. There is a saying that is something like "life is what happens while you are making plans" and that is the truth!

 

[Miss]

At age 30, you generally only need two years of work to qualify for SSDI where at age 50 you need 7 years of work. I would take a statement from your doctor about the date of diagnosis with you when you go to Social Security.

 

[BlueSeattle]

Sorry, yes to clarify we have no needs at all yet. Her only problem right now is with stairs. When she's tired she'll pull out the cane, but that's pretty rare. The arm was a big blow last night. It finally makes this thing real and i don't want to think about what that means... I've been avoiding that. It's early but I know this will be far more impacting than her leg...

It sounds like she's worked plenty to qualify for SS so we'll look into that.

 

[brooksea]

BlueSeattle, as Missy pointed out, your wife probably qualifies for SSDI and in turn will qualify for Medicare, which will pay medical bills and supplement your income. As her condition deteriorates to the point of needing in home care, Medicare will pay for Hospice. Don't think of Hospice as the absolute end, because things have changed in this day and age. I know that will probably be a long way off for your wife.

If I were you, I would definitely keep my job. Do you know any reliable teenagers that can run errands, clean the house, do yard work, etc...? They work cheap.

 

[sadiemae]

AND, It will be retroactive to the time she quit working or was D X with ALS, as long as it has been at least five months.

I believe she has to have a work history in the past 10 yrs to qualify

 

[CathyP]

Try not to figure out every step now--you sound like you have time and things and circumstances can change. There is a saying that is something like "life is what happens while you are making plans" and that is the truth!

You have gotten fantastic advise from all that replied. I especially like what Barbie said.

 

[highspirits8]

In California, if you pick a relative who you trust and know will care for you they will pay them. An assisted living aid my friends cousin does it for his grandmother. I do not know the details but I do not it exists.

 

[Pandora]

The best advice I can give you is this, get disability now. Do everything you want to do. Take that vacation, make that trip to see the _____________ you always wanted to see, DO IT NOW. My husband was diagnosed Dec. '10 and passed away November '11. Our case went fast, and it was a hard road. I wish we had the time to do the things we wanted, we didn't. Just because her case is slow now, does not mean it won't speed up. Spend all the time you can with her, its hard when you say " I should have stayed home that day, or I should have gotten that equipment faster." Get everything you can get now, it is better to have it and not need it, then need it and not have it. i know we needed stuff so fast and we went with out. Our case was fast and overwhelming, but I did all of the caregiving myself and i am paying for it now. I have body burnout. Get the family and friends involved. you are going to need them. My husband was only 33 when we got the news.. he was able to get SSDI. So we were young too. I did quit my job to spend the time and caregive it was our only choice, but i will always relish the time we had. I miss him everyday. Dont have shoulda, woulda, coulda!

 

[BlueSeattle]

Well good news is her arm started feeling better so she now doesn't feel it's ALS related. Bad news is two days later she tweeked it again.

Still, this was a wakup call. We (mostly me) can't live in denail... this is happening and we need take actions on things. Thank you all for the great advise. I feel much better now

Pandora yes, Monday morning (the day after I started this post) I started planning a long vacation for the two of us. One week in Paris, and another in I'm not sure (I'm thinking Rome... but that might be too much walking) We had our ALS support group that evening too and they suggested while she can walk easily we should do the trips to foreign countries as they're often not as accessible as the US. When things get worse we can do the US trips/cruses that are much more accessible.