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Mom had a stroke 2 years ago and was diagnosed then with full blown vascular and LBD. She lived with my sister who was just 60 and passed 3 days after mom went into the hospital from a blood clot.
After cremating my sister, cleaning out their rental home and belongings, grieving my only sister, mom came to live with myself and husband. It’s been 2 years of unrelenting care, money concerns and navigating a very difficult system (LOL, what system). We are at the end of my rope. I now have a HHA that comes at 6am, mom’s always been an early riser, takes her to memory camp from 9-3 where I pick her up. This assistance has only been for 2 months now and although it’s helped I’m exhausted and so is my husband who works 7am-7pm in NYC. He then comes home exhausted, we’re in our late 60s, helps by giving mom pm meds and dinner. I’ve had 2 unsuccessful back surgeries and every ounce of energy he and I have goes to mom. My marriage seems like it’s on hold and we need DESPERATELY need to get away. The stress of the past 2 years is killing us both and we cannot find affordable respite care on Long Island. My husband was planning to retire January 2018 and we were packed and ready to go to Florida when mom had stroke and beloved sister passed. We are so depressed, exhausted and frustrated trying to do the right thing. My husband is still working, we are paying for a house in Florida, renting in NY, and can’t seem to get out of here. My mom is 91 now and never set anything up for her golden years, just a small savings and social security that barely keep her in diapers and high cost medications. She can’t sign her name anymore so a passport or enhanced driver’s license means she can’t even fly by plane since January 2020. Our system has no tolerance or help for those that really need it seems. We just need some time to regroup. I’ve hired an elder attorney in Florida but can’t get out of NY. Retirement now reset for August, his 70th birthday. Any respite suggestions for now?

I sincerely think you need to apply for Medicaid on behalf of your mother so you can get her placed in long term care, asap. You can't go on like this, or both you and DH's health is going to suffer catastrophically! "The right thing" covers a lot of territory. You've been doing the right thing by caring for mom, and you will be continuing to do the right thing by allowing others to do 24/7 caring for her in a Skilled Nursing Facility, either in NY or in Florida, if that's where you're moving. I guess you'd have to rent an RV to get her to Florida; that could be an option.

I have no idea about respite care, but the others have advised you. Would mom qualify for hospice at this time? You don't know unless you have her evaluated. At 91 with her dementia & health issues, she may just qualify and then respite would be paid by Medicare. Not much respite, it seems, but better than nothing.

I'm so sorry for the loss of your dear sister, and for the stress your mother's care is causing both you and DH. I really hope you will consider putting yourselves first now, and realizing that this level of care that she requires is out of the scope of your abilities as seniors.

Wishing you the best of luck, and sending along a big hug & some prayers, too
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Reply to lealonnie1
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Why don't you ask your moms Dr. to write orders for Hospice. Once your mom is on hospice, she automatically qualifies for respite care in various facilities and Medicare covers 100%. They can go every month for 5 days. Hospice also covers all her meds, diapers, bed pads, gloves, etc. There will be a nurse that will come out once a week ( can be more, depending on you moms condition), bath aides 3 times a week, a social worker that makes the arrangements for respite care and help you with any other services or info. you may need. Hospice also provides hospital bed, wheel chair, shower chair, bedside table, bedside commode and various medical equipment your mom needs or may need and this is all covered by Medicare 100%. My husband also has LBD and I have hospice service for him, it really helps out; especially respite care.
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Ricky6 Feb 9, 2020
You indicate that Patients can go every month for 5 days for respite. I do not think that is true. From what I researched you can get respite care more than once, but only on an occasional basis under Medicare Hospice.
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I'm 69 and can't imagine how you two manage! Medicaid in Florida, since you want to spend time there anyway, sounds good. I believe I've heard of airplane flights, called compassion flights - maybe they could take her down?
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gdaughter Feb 8, 2020
You might be thinking of angel flights, but that goes back to the issue of inadequate ID which I do not think is an issue as yet or could be worked around with some efforts prior to flight with the TSA/airline or whomever.
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I also think that you should look at LTC in Fla for Mom. The only problem will be transporting her there. Some posters have recommended renting an RV.

As Techie says, she/you may have to private pay till you can get Medicaid set up. It will make ur lives so much better. She will have everything she needs on Medicaid. You will have no Out of pocket expenses. She will have a personal needs account where about $50 ( some states more or less) will be taken out of her SS for personal things. You buy something she needs, you show the receipt and get reimbursed. All you will need to do is visit. And that doesn't have to be every day.
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Reply to JoAnn29
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Is she on Hospice? If not why not call to find out if she is Hospice eligible?
You would get a Nurse that would come 1 time a week, more if necessary. You would get a CNA at least 2 times a week, more often if needed. You would have a Social Worker that can help you navigate many systems. And as part of Hospice you would be able to place mom in Respite. This would be covered by Medicare or Medicaid.
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Reply to Grandma1954
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My understanding is Medicare funds a 5 or 7 day respite stay each year. Can Mom's PCP or the local Area Agency on Aging (AAA) SWs help you find a respite placement accepting Medicare?

Do you already know where you are moving to in FL? Have you considered getting Mom a FL LTC placement now and moving her into LTC prior to your move? My understanding is you may need to fund LTC for one month to establish your mother's FL residency, then she could apply for Medicaid. Contact the county AAA or Medicaid office where you plan to reside in FL.
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JoAnn29 Feb 6, 2020
Medicare only pays for respite care when Hospice is involved.
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Medicaid is a state by state process.  If you apply in NY, you will have to reply in Florida.  Very sorry about your situation.   If she or your dad was in the service, have you looked into VA benefits, if she is low income, she may be able to get a stipend.
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gdaughter Feb 8, 2020
This is why I would strongly encourage a consult with a certified elder law attorney to figure out how to do all this and maybe they know someone in FL who could pick up the trail down there...
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My father is 94 and my mother passed away 2 years ago after being in an assisted living facility for 4 1/2 years with dementia. Here’s what I learned. ANY type of assisted living care is extremely expensive. I don’t know how most people afford it. Dad spent over $500,000 for mom’s care and we’re not talking about even the most expensive facility in our area. At the time, most decent facilities were $8000-$9000 per month. Qualifying for Medicaid at that time meant mom had to have virtually no $ and Medicaid at that time had a 5 year look back period. Since most accounts they had were joint, of course she didn’t qualify. I would advise - especially if your dad was in WW 2, going to an elder care estate planning attorney to see if they can help you qualify your mom for VA benefits or Medicaid if she qualifies. Our area here in NC seems to have few Medicaid facilities but yours may. My brother and I are now caring 24/7 for our 94 year old father, I retired early to do so and have two teenage daughters. I understand the difficulties you are encountering. Best of luck to you all.
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Reply to momof2angels
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So sorry for the loss of your sister. How about if your mom renews her passport (& can have regular drivers license) place her in facility near your Florida house? Maybe you move down there permanently since you’re only renting in NY? Have Elder Atty make you poa & Health proxy..then you can sign for her...Does Atty have NY office too? Since your mother has little $$$ there will be no problem if you apply for medicaid on her behalf. Was your Father a VET? She can get Aide & Attendance. Long Island care facilities very expensive...I live in Queens & not much better. If all else fails. You can always do ER drop off & say there’s nobody to take care of her at home & you’re not well . Social Worker in hospital can help place her & medicaid office in SNF will work with you. Don’t wait till you’re too sick yourself to do anything.
Good luck & hugs 🤗
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Reply to CaregiverL
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worriedinCali Feb 8, 2020
An attorney cannot give her POA. Her
mother has to do it and that ship has likely sailed on by since mother now has full blown vascular dementia.
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So, you have mom from 3 pm until 6 am and give nighttime meds that keep her quiet all night. Hubby works from 7 am to 7 pm and comes home exhausted, which means that no amount of respite care will be for his benefit as it’s not elder care making him exhausted at all.

If you indeed found respite care, you haven’t said whether hubs is taking time off from work to enjoy it if he’s planning to retire later this year.

I think the Problem is that you feel stuck and because of your back problems you have low energy for dealing, probably, with anything.

What you need to do is get to work on fixing things permanently so you can begin the next phase of your life (that you must resent being robbed of).

You’ve been given some advice on how to make that happen. Once you begin to work proactively on a solution you will feel much more positive about life in general.

Ultimately, the goal is FLORIDA. Put all your efforts into achieving that goal, even though you’ve hit an unexpected bump in the road. Your husband needs this as much as you do.

Good luck,

charlotte
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