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?
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.
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.
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
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!
The best of luck to you.
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.
* 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.
Good luck & hugs 🤗
mother has to do it and that ship has likely sailed on by since mother now has full blown vascular dementia.
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!
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
Also, try Hospice. They have a program for respite care.
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?
* 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.