Follow
Share

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?

This question has been closed for answers. Ask a New Question.

31 Answers

Most
Helpful Newest
First Oldest
First
1 2
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.
Helpful Answer (5)
Report
JoAnn29 avatar
J
JoAnn29 Feb 2020
Medicare only pays for respite care when Hospice is involved.
(2)
Report
See 2 more replies
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.
Helpful Answer (7)
Report
Medicare only pays for 5 days of respite and you have to be on hospice. So if your mom isn’t on hospice, Medicare won’t pay for respite care.
Helpful Answer (3)
Report
Contact your local county.   I've been told by a woman who worked in respite care through county selected "clients" and paid for the care.   I never investigated it any further so I don' t have any more details though.
Helpful Answer (1)
Report
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
Helpful Answer (11)
Report
I feel for you. It is extremely exhausting trying to sort out these details.

Is there any way your mom can become eligible for Medicaid and then go into a nursing home? She needs a lot of care. I don’t think you will be happy with one person as a caregiver. She may be better off in a facility.

Go and enjoy your life in Florida!
Helpful Answer (4)
Report
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.
Helpful Answer (5)
Report
G
gdaughter Feb 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...
(2)
Report
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?
Helpful Answer (8)
Report
G
gdaughter Feb 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.
(2)
Report
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.
Helpful Answer (5)
Report
Would there be any senior services or church affiliated groups in your area that might offer volunteer respite care? That might help give you a temporary break, but the advice people are giving about looking into VA or Hospice or Medicaid, perhaps in Florida, sounds more hopeful for longer term. Working on some of these possibilities might help you feel more in control instead of just overwhelmed.
The best of luck to you.
Helpful Answer (4)
Report
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.
Helpful Answer (6)
Report
We were in this position for 5 years before my mom passed away. Had one year barely getting our footing back when SIL who lived with MIL passed at 55, then right back into limbo with MIL as my husband is now the only one. My advice is take it one day at a time. I know it is hard, some days I am so depressed. I keep telling myself it has to get better at some point. However it is hard to believe that sometimes when round 2 happens. If you get hospice at some point they do offer Medicare paid respite for a week a couple times a year if you are doing the in home care all yourself. The nurses and aides came in a couple times a week and this was immensely helpful for me. The only way I get through this is by compartmentalizing each day and grabbing any good moments I get,however small or fleeting.
Helpful Answer (4)
Report
whoa...OK, I have a friend whose hubby had LBD and I'm sure don't have to tell you things are not going to get better, and your mother's needs are only going to increase. And you two (you and hubby)...you are going to do severe life-impacting damage to your own health circumstances if you don't take some actions now. Yes, the system sucks, but you need someone who can help work the system for you and make sure you and your mother are getting every possible bit of help you can. To begin with additional help might be available through a respite program. You need to connect with your local Alzheimer's Assn and the local Area Agency on Aging. Most importantly I was happy to read about your getting an elder law attny in FL...but you need, ASAP to get a CERTIFIED elder law attorney where you ARE in NY involved and they will be able to give you the guidance you need taking into consideration all you have mentioned. You and your husband cannot do this alone, and I'm sorry to say that even respite care/time off is sort of a tease. Oh, it is so welcome, but it needs to be a constant. And the reality is that your mother may need to go on medicaid and be placed in a facility...but probably you want to research that in FL. As for the ID for flying, I'd be asking the attorney or the TSA...this can't be the first time this has come up and there are probably exceptions for the circumstances...a letter from the MD for instance, or the attorney along with an expired ID with picture should do the trick I would hope.
Helpful Answer (4)
Report
In the interim of researching/finding longer term care/solutions, I would encourage you to:
* meditate. While this may sound trite, it is a way for you to renew, realign, rebalance yourself, and leave all the streesors outside. Even a few minutes a day will change your brain chemistry/responses to what you are challenged/coping with on a day-to-day basis. Even if you don't feel it is doing any good (1-2-3 or 10-20 minutes), know it is doing something good for you/r brain and being.
* Find interns at colleges in nursing, social work, geriatric programs who might need or be able to gain internship hours working with you. Talk to program Directors at all levels of colleges to see if they have any program. If this is the field people want to get into, working with / supporting you is getting into the trenches.
* Call massage schools. Students need practice people. Let students give you a complimentary massage (I am a certified massage practitioner myself.) If you are concerned about their level of knowledge, keep the massage to areas where stress is generally high (neck, shoulders) and don't let them work on areas where you may have 'serious' physical limitations or sensitivities. There are counter-indicators to massage. This form of relaxing muscular touch will support your overall well being.
* I send you healing light. There are no easy answers. The bottom line is that we all need to find out what we can do for our selves / self to sustain - and feel positivity - to keep going each day, along with the state-federal - legal and social services/health programs/financial support.
Helpful Answer (4)
Report
Gosh, I feel you pain. I worry we are headed down the same path. Praying God will give you the answers and help needed. You obviously have a tender heart. A vacation is well deserved for you and hubby. Perhaps you could hire someone to stay with your mom while you and husband take a mini vacation? I’m wondering the same thing with my situation. thinking that if I did that, maybe if I called them once or twice a day that would make it feasible? I would have to simplify and cut back on the spending of vacation to compensate for the expense of care of parents while we are away...?
Helpful Answer (3)
Report
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 🤗
Helpful Answer (5)
Report
worriedinCali avatar
W
worriedinCali Feb 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.
(3)
Report
Hello,

I am so sorry for the loss of your sister.

It is extremely hard taking care of someone with Vascular Dementia full time with no help, at least you have the day care for now, that’s a blessing. I can’t afford daycare, near me for Dementia is $105 per day.

Since you were never a designated POA by your mom before the Dementia you need to apply for legal Guardianship so that you can sign for her, represent her, apply for Medicaid and obtain a Real ID non-drivers license so if the need comes up for her to fly to Florida she can. The rule starts this October 2020 that you need either a valid passport or Real ID or Enhanced license (good for boarding cruises).

Taking care of someone with Dementia is exhausting, I am in the same boat...I get no sleep and I’m doing this all on my own for now without payment, it’s very difficult, and I’m set up for an Echo Stress test because I’ve been having chest pains and at 45 years old it’s not normal.

Florida may be the best situation for all of you including your mom, facilities down there look like a resort, I too have immediate family down there and I’m always thinking about making the move, but I do believe the best doctors/hospitals are in NYC. If leaving her at a facility for a few days or a week is too expensive, so you guys can take a break, look into hiring caregivers on Care.com some are experienced in Dementia care, and you can negotiate their hourly rate, always do a background check and definitely check their references.

Good luck to you and your husband, enjoy your time together. God bless!
Helpful Answer (2)
Report
CAn your afford a private caregiver for a few hours? Or ate there any family, friends, church members who can help out? Or perhaps taking turns with another caregiver for some time away? Maybe price services through care.com or a companion agency. Have you contacted your local area agency on aging? They may be able to help especially with lower costs alternatives for medications. Other medication assisstance programs such as goodrx.com or coupons through the manufacturer or low income assistance programs through the manufacturer. Good luck.
Helpful Answer (0)
Report
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.
Helpful Answer (10)
Report
R
Ricky6 Feb 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.
(2)
Report
You need respite. Have you opted for Hospice for your mom? Contact town's social worker.
Helpful Answer (0)
Report
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
Helpful Answer (5)
Report
Have you reached out to an elderly law service? We have one here (Western NY), and they were extremely helpful in getting social services in place, including joining a care group that provides as much home care as is needed. Things like pull up pants and other medical supplies are also covered. Don't know where I would be without them!!

Also, try Hospice. They have a program for respite care.
Helpful Answer (2)
Report
I'm so sorry to hear of the terrible strain you are both under. I don't have any helpful information, only a question. Does the location of your home in FL or the surrounding region within the State have any better options for placement for her within her budget limitations so you could all move down there together, and forego the expense of the NY rental home?
Helpful Answer (1)
Report
maybe church family. Or do you know of anyone in nursing school who could use the experience?
Helpful Answer (0)
Report
For mom's travel: Call the driver's licence department where you live. In Texas, if you are no longer a driver you get a state ID card. Recently they offered a replacement card for $6 that has the travel star on it. You could also apply for a passport online and that would allow her travel.

If you're goal is to go to Florida, then go so you can give up the wasted rent dollars. Take mom with you and reach out for respite care and elderly programs when you get there.

For now: There should be a medicaid office (for elderly benefits) where you live. Start with them. They are a wealth of info. Check out this website for elderly benefits/programs in NY - https://aging.ny.gov/. Do you have any friends or family members who could come and stay in your home so you could grab a week's vacation? Church friends that might be able to do a schedule?
Helpful Answer (0)
Report
Contact local church for respite.
Helpful Answer (2)
Report
You can get the "enhanced ID" any time now but don't need it for flights until October 1, 2020.
Helpful Answer (0)
Report
My unique suggestions may seem off the wall, but these are 'off-the-wall' times and now with the c-virus, all situations are more challenging.
* I would suggest you and your husband do some 'tantra breathing' together. Google: tantra breathing exercises for couples (or You Tube). It can be very simple: sit, holding hands and look into each other's eyes and breathe together. It is a powerful way to connect. These 'connecting moments' could be 5-10 minutes although when fully present, these experiences deeply affect one viscerally, relieve stress and support the release of OXYTOCIN (the 'feel good' neuro-transmitter and hormone). It is a start to a 're-boot, re-set' button for your relationship. Healing for both of you individually as as a couple.
Helpful Answer (0)
Report
So sorry for the Lois of your sister. As well as the difficulties you are experiencing on a daily basis. My mom passed me away 2 years ago and had been diagnosed with LBD. Dad passed away just less than one month ago but was mentally very sharp altho he had many health issues. In his case, the local county Hospice services were a Godsend. .Althi he was at hone until the last week, after 9 months of Hospice care we were casually told that we (my brother and I, who had been caring for him 24x7 for the past month) has been eligible for one week of respite care for Dad at a Hospice facility- one week approximately every 3 months! Please check with your local county Hospice for their help! Also, if your dad served in the Armed Services, your mom may qualify for “ Aud and Attendance” which is $ for her care. Please contact an eldercare attorney about that or google it. Best wishes to you and your husband.
Helpful Answer (0)
Report
Have you met any of the other people who have family attending the daily memory camp?? There are probably other people in your exact pair of shoes. You might be able to work out a deal with one or two of them to offer a long weekend or a week of care in exchange for the same. I used to live near some people who had mentally challenged adults in their home, they went to daily care like you have mentioned, and they swapped out care with each other to be able to take week long vacations. Worked out well.
Helpful Answer (0)
Report
1 2
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter