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Been here before, my husband is just getting worse and worse. He will be 80 nextmonth and I will be 70 next year if I make it. The doctor says he is in stage 5 but I thinkit is more like 6. He is still mobile but I have to help him with mostly everything now. Bathing, helping him get dressed, etc. Still can eat meals on his own. I am totally burned out at this point. No help whatsoever. I'm so scared about trying to get Medicaid for him for fear of living on hardly anything. If he passes away I get half his pension and his social security. He worked for N.Y. transit as a bus driver but when he retired only put in for me to get half. He is so confused most of the time and doesn't recognize our apartment or anyone anymore for that matter. I am really not sure what I should do. I have been fighting the Epstein Barr virus for 2 months now for lack of rest. My doctor said it could last months. Would like some input again on this. Thank you kindly.

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Cheeky79: Speak with his neurologist.
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You need to put yourself first. Talk to attorney, split assets, talk to social worker about placement or if you can get some respite.
We need to at some point realize what those diseases do to us and getting sick is certainly some clue that changes are needed.
It is happening to me as well, it is not physical but I can see mentally is effecting me.
Sadness came from realizing how my husband condition is progressing and I being eternally optimistic person somehowI believed something else can be done.
Finally I am coming to realize nothing can be done.
He has advanced Parkinson’s, spinal stenosis and more. Could be paralyzed in weeks, months. Looking at placement in AL could be NH.
As my life is important as well I need to find ways to rebuild it on my own and so do you.
Even small steps finding what is available to, making financial plan and taking care of yourself should be first step. Regaining some normalcy.
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Find a holistic doctor to give you vitamin B complex IV infusions for the EB virus. They kept me upright during the worst of the virus which does last for months. I had the 8nfusions in office every 3 weeks.
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I'm sorry to learn about your husband's condition. Please contact an elder attorney and social worker to help place your husband in a care facility so that you can get your almost age 70 back to fun activities.
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You go see an Elder lawyer and tell him you need to split assets so you can place your husband. His split will go towards his care. Before his split runs out you apply for medicaid. Once he is on Medicaid, you remain in your home, get one car and part or all of your monthly income to pay your bills. I know a woman who needed to do this, and she seemed to be able to still take care of her self.
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Have you tried getting help?
Caregivers that would come even 5 days a week for a minimum of 3 hours but 6 or 8 would be better.

Is there an Adult Day Program that your husband could participate in? That would get him out of the house 2, 3, 5 days a week for 6 or 8 hours. You pick the number of days and they pick him up, provide a breakfast, lunch, snack and activities. You get a break and he does as well.

Have you checked with the Senior Service Center in your area or Area Agency on Aging to see if you/he qualify for any programs that can help.

Is your husband a Veteran? If so contact the local Veterans Assistance Commission and they can help determine if he qualifies for any benefits through the VA. Depending on where and when he served it could be a little help or a LOT! (another note on this...you may actually qualify for help as well if your income is within a particular range. Aid and Attendance is "means based". the Veterans Assistance Commission can help with this as well. If there is no Veterans Assistance near you you can check with a local VFW or your States Department of Veterans Affairs)

Have you checked to see if your husband would qualify for Hospice? If he qualifies you would have a Nurse come at least 1 X a week. the Nurse would order all the medications that he needs and would order all the equipment that you need. Medication and equipment would be delivered to you.
The CNA would come at least 2 X a week to give your husband a bath or shower. the CNA would order all the personal supplies that you need and those would be delivered.
You would also be able to request a Volunteer that could come and sit with your husband while you get out. Most can be scheduled 1X a week.
Hospice also will cover Respite so you can get a way for a bit.

Lastly...
It is never an easy decision but when it comes to your health and safety placing him in Memory Care might be the safest option you have.
You can talk to a Social Worker or if you have a lawyer talk to them about the process of application for Medicaid and see what the requirements are and what would actually happen to you as well. the intent is to not impoverish the spouse.
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Cheeky79 Aug 14, 2025
He is not a veteran.
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It doesn’t hurt to speak with a Medicaid planner . I really don’t know if your husband’s pension would all go to his care or if you would be able to keep any of it for your living expenses . Medicaid is a state program and the rules can vary between states. I’m so sorry for your situation . Perhaps contacting your County Agency of Aging to have a social worker help you navigate this as well as find out what help there may be for you now at home , and if/when your husband is in a facility on Medicaid.
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You are believing stories on Medicaid instead of getting the actual facts. Contact your local Medicaid office. You will not lose everything if he is placed.
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Resources:

Call social services for your county. He can get assessed for in-home help (light housekeeping, hygiene, light food prep, etc.) It won't be full-time but it can be free and will help.

Care.com to privately hire an aid to come in and give you a break.

Call your local Area Agency on Aging with questions (like about Medicaid) or other resources.

Call 2-1-1 to get conntected to other resources.

Since Medicaid can vary by state, you should research online what it means to be the "community spouse" for someone applying for Medicaid. You also need to learn what level of care it pays for: in most states it is only LTC and not AL or MC. There are programs like "Elder Waiver" you should ask the social worker about; some states/counties have a PACE program.

If you call the resources above you will find out what's available in your home state.
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Please don’t ruin your health. Please don’t live in fear of using Medicaid. My mother’s post stroke care quickly became financially unsustainable and she was placed on Medicaid. My dad remained in their home, kept his retirement pension in entirety, all his Social Security, all the money in their banking, and their car. He had to sell their second car but otherwise his life was unchanged financially. My mom’s SS went toward her care and Medicaid paid the rest. It wasn’t a money nightmare at all. Your husband needs you to advocate and care for him, how can you continue to do this exhausted and burned out? Please drop any misplaced guilt and look for places for him to move, ones that accept Medicaid. Meet with a Medicaid planner to walk you through the process. Your local Council on Aging may help with information. I wish you rest, healing, and peace
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People with Alzheimers can Live to be old . I Have a couple friends whose Parents are in Memory care and Have been there for several years . They are around 95 and do Not Know who anyone is . If you are Burnt out you may want to reclaim your Life . 70 is young .
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