First of all, thankfully, I'm in my 40s and my parents (75+) are still with me.
They live in their own home for 50+ years (completely paid off), but due to my mom's dementia and my dad's physical limitations, we decided to get a home health aide (about 50 hours a week) for about 5 years now.
Now my mom's at the stage where her memory retention is about 30 seconds, often asks "when are we going home?" when she's sitting in her own living room, frequently calls me and my dad by other names of relatives, and never seems to want to go to bed (she goes to be but always gets up). She cannot be left alone by herself.
My dad, on the other hand, has been great mentally, but physical and other medical issues has his mobility limited (cane, walker, wheelchair often) and is increasingly exhausted, frustrated, and the lack of sleep and helping to take care of my mother when they aide isn't around is clearly contributing to his own decline.
They both have a regular specific med schedule (morning & night) that will be missed if the aide or I aren't around to administer or at least remind them and follow up to make sure it's done.
I live across the country, but have been making trips back to check on things or help care for them when there's a lack of coverage in the home. (generally an absent aide or if one of them has an extended hospital stay). Of course this is taking a toll on my own mental health and finances as well. This latest incident (surgery for Dad) has me living here 3+ weeks now helping to take care of him (well, both of them) after hours,
I want them to stay in the house that they've lived in for as long as possible, but am unsure of when it's time to move on. Assisted-living, memory care, nursing homes just seem to be so expensive and even if we sold the house there's no guarantee there will be enough money to last for those services. Even hiring a separate evening/overnight aid is expensive and just seems like a band-aid for an open wound.
Any advice? Thanks.
(hope this is in the right forum... first post!)
Your mom's wanting to go home should not be taken literally - it's a call for help - she is missing a time when she felt safe "at home", perhaps a feeling she had as a child in the home she grew up in - which can mean she does not feel secure now - she is likely scared - she is aware she is having problems and needs a sense of security which can be felt in a facility, where there is a routine and people know how to speak to her and provide stimulation and activity. It's very likely she is not getting that from an in-home caregiver and she is def aware of your father's limitations.
You can learn a lot about how to understand dementia from Rachael Wonderlin:
https://rachaelwonderlin.com/dementiabyday/
You would use Medicaid to pay for a nursing home. Some ALFs take Medicaid.
If your mother or father is a vet the VA has a program called Aid and Attendance and would be used to help pay for ALF or MC expenses or Nursing Home expenses. Both of these programs (Medicaid and A&A from VA) require heavy documentation of out of pocket or unreimbursed Medical expenses annually, so get yourself organized!
You may want to consider having a consultation with an Elder Attorney so you know all of your financial options.
You may also want to consult with a local Care Management Company (usually run by a social worker or a nurse) who can help decide on the best level of care for your parents and they are also familiar with all of the local facilities.
I have been down this road from long distance like you and couldn't have done it without the advice and assistance of an Elder Attny and a Care Manager.
You have started asking the right questions - just continue doing so and you will start to see the answers more clearly.
You could hire someone just for the night shift so Dad could sleep.
Best thing might be to hire a Live In if there's an extra bedroom in the home.
Set up cameras in the home and you'll be able to check in to see what's going on 24 7 from your computer or cell phone.
Care home may be the solution for you.
Medicare does NOT pay for any kind of LTC (long term care, aka AL, MC, NHs.) They cover, to a limit, skilled nursing when someone has to go to a NH for rehab and the like, but not for living there.
Another alternative could be a care home. I'm not as familiar with them, but they are set up more home-like, so I've read. I've also read that they can be less expensive - again, they would both be living there together. Two can't live as cheaply as one, but certainly it should cost less than living separately.
Given concerns about funding, I would avoid the Continuing Care places. They require a hefty deposit (HEFTY!) and still charge a sizable monthly fee.
The facility we chose was newly rebuild and non-profit. It had IL/AL and MC. Mom moved into MC directly, not AL. They even have an endowment that can help those who outlive their funds and need help paying. It was a wonderful, caring place and I've already told my kids to put me there if I need that care!
Start here for information about Medicaid:
https://www.payingforseniorcare.com/medicaid-waivers/assisted-living
You can high-level check costs/arrangements by state. Most Medicaid (has federal funding, but every state has their own rules and coverage) doesn't pay for AL - they might cover the medical necessities, but not the "rent", aka cost of the room, which is really the biggest part of the cost. You would have to ask the facilities for a break out of the costs based on their needs. They would do assessments, recommend the care needed and the costs associated with that care as well as the cost of the rooms. They would not be providing 24/7 care, AL isn't geared for that. However, since dad can be with her, it might work out okay.
It does sound like this is something that needs to be addressed soon, so NOW is the time to start looking at the various facilities in the area, either theirs or yours. Every facility is going to be different, so make a list of questions, take notes and compare the cost and care provided. Some answers might bring up additional questions too. Get some appraisals on the house and research trust funds (they may need EC atty services to set this all up.) My mother had some assets, which we used to open the trust fund. Despite the condo being set up by the atty as a Life Estate, we sold it and put all the proceeds into the trust. (Life Estate should only be considered when the person can remain in the place as long as possible, as close to death as possible - it was NOT the right thing for us to have done, but I didn't know squat back then!) The trust was opened before we needed it and was well managed, earning interest. Despite having to tap into it for 4 years, part of the time covering the condo costs until we could sell it, there was still enough to last many more years!
Also, for the sleeping issues - have a discussion with her doctor(s). They should be able to Rx something to aid in getting her to sleep. Mom only needed the anti-anxiety when she had a UTI. It did NOT dope her up, it relaxed her, eliminated the sun-downing (OI!) and she was quite ready to retire at bedtime. It might take a few tries to find the right med, but it will be worth it.
Mom can transition to Memory Care more easily.
Caregiving is difficult and even harder when being a Care Manager from a distance.
In a facility that is set up for their level of need, that is safe for both of them given their different level sounds like the best option.
Selling the house, placing it in a fund that will provide for both of them, then applying for Medicaid if necessary. When selecting a place that has both MC and AL ask if they accept Medicaid and how long would they have to be a resident before being able to go to a Medicaid pay. (and are either of their individual medical conditions enough that would qualify them for Skilled Nursing it might be possible that Medicare would cover portions of that. (I am not familiar with Medicare to know about the coverage but there are plenty on this site that are.)