Financial implications

[lilyb]

My only worrisome symptoms at this time are what I believe to be muscle atrophy in my left calf, and now localized fasics in this area, along with generalized body wide fasics mostly at rest. I believe I have some weakness, but am able to function normally. Yesterday we spent the day walking at an art fair, and my leg is sore, muscles tight, non-stop fasics, but not twitching. I will pursue a neurology appointment today.
From what I read, "typical" progression includes muscle weakness, atrophy and fasiculations. (I am hoping this is a huge case of stress and anxiety- three jobs, sold two houses in this market, bought another one, and now have two adult children, one who is jobless living with us. . .)
At any rate, does anyone have any suggestions about what we can do to prepare ourselves financially if I would indeed get a diagnosed of ALS? We have used all of our reserves in these moves, and supporting our children. Our retirement has taken a huge hit as well. I am not ready or able to retire from teaching, but am not what I can do to minimize I have not signed up for short/long term disability, nor do we have long term care insurance. I would be grateful for any input or direction. Thank you in advance.

 

[halfin]

Hi Lilyb - I too am a new member here so I won't try to evaluate your symptoms. But even assuming this all blows over and is just a scare, it is a good reminder that we are all mortal and it never hurts to make plans to deal with the unfortunate possibility of an early passing. That's how I am trying to look at it.

If you do have the option for disability insurance through your work, it could be a good idea to sign up for it. You might have to wait until year end or the anniversary of your hire date, so check with your employer to see how that works. Life insurance is another obvious consideration. Sounds like your kids are getting old enough to fend for themselves if necessary (my 26 year old son is back home so I know how that goes!), but if your income is a major part of paying the mortgage and other expenses, it would be good to replace that for a while. Some companies offer a life insurance option to employees, which usually doesn't have any medical limits. From what I have read here, buying private life insurance may be problematic even at this stage when you have rather vague symptoms. But assuming that you're fine and this is just stress, having life insurance could bring peace of mind in the future.

Another point to keep in mind is regular medical insurance. At our company there was a big push this year to switch people to health savings accounts, with a high deductible insurance plan. You have to look at the details, but I don't think that makes much sense for middle aged people like us. It's more for young people who are likely to have no problems and build up a good cushion in the HSA to pay expenses in later years. Just the tests and evaluations I've had in the past two months have been over $2000, and I'm very glad that my insurance has covered the great bulk of that.

I'm not sure how long term care insurance works. Unfortunately ALS does not generally offer a long term prognosis. But I'm sure the last years and months may be quite expensive in terms of therapy and assistance.

 

[BethU]

A note on long term insurance: I had a policy through work and kept it when I retired. I thought it would be for nursing home care, but my ALSA rep read the policy through, and it turns out it covers in-home care too. That is what is paying for my 7-day a week caregiver now.

Cost through my caregiver's agency for 5 hours a day is $115. LTC insurance is paying $75 a day, and I am paying $40. That is a significant help to me. Also, once you make a claim, you no longer have to pay premiums. I was fortunate with this policy to have a really sympathetic response; the claims person I talked to back-dated my application six months to my diagnosed date so I could avoid a 90-day waiting period, and sent me a refund of premiums I'd paid since diagnosed.

The premiums for LTC are high, but I am very glad I have it. If it is available and you can afford the premiums, I recommend it. I'm sure policies differ, and costs of care are probably different in different cities, but my policy was for the minimum coverage the company offered, and it is a terrific help.

 

[lilyb]

Thank you BethU and halfin- I have life insurance and my employer has no plans to move to a health savings account. I will check into LTC and disability insurance. I truly appreciate your input and hope you are both having good days.

 

[GlenBrittle]

If you are not yet diagnosed , make sure every mortgage , loan , etc is covered by disability & life insurance. Be wary of them too, some of them will sell the policy now , and wait until the claim to say that you had an existing condition. Work with people you trust.

Glen

 

[lilyb]

Thank you Glen- I had never considered this- I bet I can still get our mortgage covered with life insurance, but I'll have to check about the rest of it.

 

[joelc]

Please be careful as Glen has already said they will check for preexisting conditions at claim time and will not pay.

 

[GlenBrittle]

Dont forget the disability insurance. That will cover the time between not working and passing to the other side. Check on how disability is covered for.

Good Luck.

 

[lilyb]

Thank you all.