ALS News Today Forums Forums Living With ALS Did you plan ahead for long-term care, or were you in denial?

  • Did you plan ahead for long-term care, or were you in denial?

    Posted by Dagmar on November 1, 2022 at 1:01 am

    According to this online article by AARP, sooner or later, most Americans will need some long-term care. But many don’t want to talk about that reality, much less plan for it. People plan for retirement, but don’t plan for their older adult years in an aging body – – much less plan for the possibility of having a condition such as ALS.

    Planning for and being financially able to afford long-term care such as help getting to appointments or cooking meals or help with bathing and dressing from a family member or a paid aide at home. Or even months or years in an assisted living facility or nursing home. Much of that kind of planning isn’t often done in the years before we need it because we’re in denial that it even could happen to us at all.

    Did you have plans in place for long-term care prior to your ALS diagnosis, or do you wish you had? What advice can you share with our members about your experiences planning for and now using long-term care?

    Cheryl Teribury replied 1 year, 8 months ago 8 Members · 8 Replies
  • 8 Replies
  • Kathleen B (Katie)

    November 1, 2022 at 5:33 pm

    I think in the case of ALS, ‘denial’ is a totally inaccurate term to use.  I made plans via a life insurance plan with riders for ‘other circumstances’—because my plan was to live to 100 in as healthy a way as possible. I was not a smoker, drinker, dare devil, etc.; I kept after PCP re: checking & advising on lifestyle choices to  avoid high blood pressure, diabetes, dementia, heart health,  etc., etc.  Never thought to ask for a list of rare diseases; was always aware that accidents & cancer or heart attack can still occur without warning.  So, a diagnosis of ALS was unexpected, not a denial.

  • david milgram

    November 1, 2022 at 6:00 pm

    My wife contracted ALS in 2019. We have only our savings to rely on. How much is needed per month for non-medicare-covered in-home help in a high-cost area like the SF Bay Area?

    • Gideon

      November 3, 2022 at 3:49 pm

      Dear David

      When my wife first diagnosed with Parkinson  on 2016.I try look for long term insurance, unfortunately I was denied. On 2017 we ask for  a second opinion and unfortunately my wife diagnosed with ALS,  still in I did not believe it we had a dream together, and our dream just lost in the fog,

      Unfortunately the health system in this country leave you with no money and no hopes, and day to day struggle .

      In Texas if you  sign for Medicaid’s, you have to sign your home bank accounts, land  as a collateral  for careing you love one by the system.

      Try to find any organization for help  with equipment, drugs, respite help

      We all here to help each other.

      Best wishes


      Caregiver for my love of my life











  • Prudence Runyan

    November 2, 2022 at 9:09 am

    My husband and I worked with a financial planner years before retiring. We had always thought long term care insurance was unaffordable. But things have changed over the years. Now there are products with HUGE up front premiums, but if you don’t use up the equivalent in LTC benefit the balance is life insurance that goes to your heirs. Based on the stats about needing LTC we reluctantly each bought policies when my husband retired, two years before my retirement. Thank goodness we did. I get $5,600 per month for a home health aide. I’m not using all of that yet. I have no family history of ALS. It’s the last thing I imagined getting. I am grateful we were able to get the policy.




  • Trevor Bower

    November 3, 2022 at 2:51 pm

    I never planned on ALS, I don’t know anyone that does unless they have familial ALS, fALS,  known in the family. Quite frankly I don’t what to plan for needs or life expectancy. For me, I’m glad I am a veteran and have support form the VA. My sporadic ALS is/has been, very slow in progressing. Because of this I think it took quite awhile (years) to assign my diagnosis. It would be a great assistance to have counseling regarding the future needs so one can try to plan future care requirements. I think more needs to be done through insurance and state/federal government partnership for additional in home care. On a slightly different issue, but still requiring long term in home care, is the burgeoning population of Alzheimers and dementia patients. I don’t have a medical opinion on this  but I think the isolation of patients with ALS increases the potential of Alzheimer’s and dementia.

  • doug-frazier

    November 3, 2022 at 3:02 pm

    I don’t claim any great planning. More like dumb luck. My company offered it when I was 35 years old. It was so cheap I simply said why not. I don’t remember even giving it much thought. Now, 35 years later it will pay off. I haven’t used it yet but it won’t be long.

    In the last decade, they offered chances to increase coverage for an increased premium and I did that twice I think. I think the premiums were in the $70-$120 per month over the years. When I tried to price it for my wife recently it was unaffordable.

    My advice to young people is to buy a large policy in your 30s and consider it a cost of living. If you never use it, that is great news, it is not a loss of the money. Fear of loss is a strong bias in human minds and in this case it should not be viewed that way.

    Our country does not provide care for its citizens as do other advanced nations. We have to provide this for ourselves as pitiful as that sounds.

    For example, my company offered a cheaper rate by grouping all its employees together to get a better rate and they made sure the company didn’t play any deceptive games as well. Now realize that other countries do the same thing with their entire population which, of course, reduces the cost per person to the lowest cost possible.

    The US leaves our citizens to fight it out as individuals in the marketplace and then even allow some companies to have deceptive practices, leave the people hanging in the wind and then call it market risk. This is a simple problem that other advanced countries easily solve.

    If we are to solve it ourselves, we have to pay a company monthly for coverage which is no different than a tax except that it is much larger. So we as a nation think we are choosing “lower taxes” when in fact we either pay more and have coverage or risk no coverage and risk having it destroy our financial lives later.

    OK, I’ll get off my soap box! 🙂

  • Susie

    November 3, 2022 at 4:37 pm

    I purchased a LTC policy when I was 40 because I knew my husband would not be able to physically take care of me if the need arose. Premiums are cheaper the younger you are when you enroll.

    Fast forward 20 years: my husband has passed away and I’m diagnosed with ALS. I’m very grateful I had the foresight to plan ahead. I have not had to use it yet, but it’s reassuring to know this disease won’t bankrupt me.

  • Cheryl Teribury

    November 4, 2022 at 11:27 am

    I’d never heard of this insurance until 10-15 years ago.  I didn’t buy it, but I sure wish I had.  I was diagnosed with ALS almost five years ago.  I ‘m getting close to needing more one on one care and a place to get it.  Hindsight …

  • john hamilton

    November 8, 2022 at 3:23 pm

    For me, planning for long term care is something I prefer not to talk about! It’s tough enough—actually kind of overwhelming, I think! And to broach the subject with my souse would simply mean more agita about something that may or may not be needed! There’s emptying the house, selling the the house that we’ve had for 50+ years, selling the cars, answering sibling’s and other relatives questions. Ugh! I’ll cross that bridge…later, if necessary.

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