My husband is 78 years old and was diagnosed with bone cancer 2 years ago and was told he only had about 6 months to a year to live. He also has dementia that is getting worse each day. He has been getting around on crutches, but 2 days ago he fell and cannot walk. I am 65 years old and work full-time, we do not have any family that can help out. I get up at 5:00 A.M. and I do not stop until I go to bed. The only help I have is hospice care, but all they provide is one nurse’s visit for 10 minutes each week and they supply the necessary medication and also offer help with showering. My husband wets himself, the bed even when I put 2 pairs of disposable underwear on him, I am constantly washing his clothes and bedding.

He needs to be in a nursing home, but I do not have $ 5,000 a month, I do not even earn that much. I have called many state agencies and they all tell me that we will probably not qualify for medicaid nursing home benefits. Can you tell me who I can contact to get my husband the care he needs? I have to leave him home alone and that is not good, he does not know how to do anything and I fear that he will set the house on fire one day. I have a small savings account and some money in a 401 k, not the kind of money that I need to retire

 

7 Responses to Barbara A – husband bone cancer, dementia, can’t walk

  1. char says:

    Hi Barbara, lots of great comments from our wonderful caregivers. , just wondering how things are going? Drop us a note when you can, I understand how completely overwhelming all of this is, not much time for you. Just remember we are here for you 24/7.
    ~Char

  2. Lynn says:

    Barbara;
    I am sorry I missed your original post:( Hospice is paid for by Medicare and the rules typically do not vary from state to state. I am not sure how they justify one visit but I would question them about more certified nursing aid support. Since he is that debilitated now, his level of care should increase. I am not sure why they have offered so little support?! The first thing I would do is call a couple of other Hospices in your area. Do not give them specific identifying info but tell them your husband’s age and medical condition. See what kind of support they are prepared to offer. If you are comfortable with the current agency, TELL them what you expect and other agencies are willing to provide this. If they refuse, I would switch Hospice agencies. When you have the strength and energy, I would also file a complaint against them with Medicare. Complaints are tracked and if they have received a lot, it could affect their future funding.

    Good luck! I am sorry I missed your original post:(

    • Carla C. says:

      Dear Barbara,

      I’m sorry you’re having such difficulty getting the help you and your husband need. The hospice agency you are with should have a Licensed Masters Social Worker (LMSW) on their staff and that is his/her job to connect you with resources for your husband’s care. Definitely call the agency and ask to meet with the social worker asap! Please don’t be hesitant to describe your situation in full detail so the social worker can exhaust all resources for your benefit.

      If this hospice agency does not provide you with an LMSW to meet with, you may want to look into other hospice agencies that do. You and your husband are in my thoughts and prayers, Barbara. God bless!

      Carla

  3. Ann says:

    Hi Barbara,

    Any updates on getting some answers about medicaid coverage? Try the website below, and make sure to click on your appropriate state:

    http://www.medicaid.gov

    If you don’t get the answers you need, ask to be referred to the appropriate person/agency. Assuming you have access to a computer, you can easily e-mail your senator and congressperson, as well. Keep persevering, Barbara, and best wishes. I hope life settles down for you soon!!

    Ann

  4. Jean F says:

    Barbara, you must be beyond frazzled. Have you looked through our “INFORMATION” pages? There are two pages in particular: “FINANCIAL AID”, and “CAREGIVER WEBSITES” with many links to websites with information about programs and phone numbers you can call. Most nursing homes have a representative on staff who can help answer your questions about your financial obligations for nursing home care and what type of assistance might be available if your own funds cannot cover those costs.

    There is a page about non-Medicaid programs that provide assistance for nursing home eligible residents outside of nursing homes here: http://www.payingforseniorcare.com/longtermcare/paying-for-nursing-homes.html.

    Also, these mattress pads are great, if there’s an accident in the night you just slip it off of the bed, pop it in the washer and put on a new one – good to have 3 or 4 on hand. I bought these to save wear and tear on my father, and they have proven very durable. http://www.amazon.com/Priva-Ultra-Waterproof-Sheet-Protector/dp/B000FOA7C2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1355416966&sr=1-1&keywords=mattress+protector

    I’m sure we’ll be hearing from others with some ideas for you. Hang in there, kid, we’re pulling for you.

  5. Molly says:

    Hi Barbara, it sounds like you have a lot to deal with right now. There may be nonprofit resources in your area that can help you, including respite care that would give you a few hours a week to take care of things that you need to. It may also be worth seeing what Medicare and/or Social Security-related benefits you can qualify for. Your local department on aging, hospitals, or community organizations may have more specific resources for you. Take care of yourself as best you can…(((hugs))), and know that we are here whenever you need us. :-)

  6. Char says:

    Hi Barbara,
    I am sorry for the problems you are having as you try your very best to care for you husband. I trust that some of our caregivers will have great advice and ideas to help you obtain the necessary help he requires. Have you tried contacting a State Rep, or perhaps a local agency or Town Hall that may provide daily care for seniors. A friend of mine has her mom in such a program for a small monthly fee, and it helps her maintain her full time job.
    Please hang in there, I know it is not easy, and there are days when you think you can not continue on. We are here, and I do hope we can help you find the help you so very much need.
    ~Char

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