How do single caregivers do this on their own?? Seriously?? Where is the help if you're too rich for Medicaid but too poor to pay for help??

Breathe - then know we see you - we hear you and yes we all agree with you.

I almost wish there was a “forced” course we all were given and had to take at 30/40/50 years old that said “start taking notes now and learn how this stupid system works”. The nightmare and confusing world of “Care” on every level is too much for most people to process in the midst of crisis.

Im so sorry you have landed with us but you will find a wealth of information here. Wishing you as smooth as a journey as you can have. 🦋

Hi Hopie, I fully empathize with what you are going through. I was in the same place at one time taking care of my father. It got to the point where he couldn't be left alone. The problem was I had to work, there was no other choice as bills had to be paid, and his income and whatever I could afford was not enough to pay in home help for the hours I was not there. The only option became a nursing home, and the most efficient way to get him there is through the hospital. The hospital case managers and social workers are very adept at applying for LTC Medicaid and finding proper placement in a facility. You are right, there is seemingly no where to turn for help, and the doctors and nurses who were involved in my situation before he went to the hospital were no help at all. The only place I found help and the only way I got help was by calling 911, having dad transported, and meeting with the case worker and social worker at the hospital. They helped with the Medicaid application and found a decent facility for my dad that would take him. And they would have held him until they did find a facility as they were fully aware he would not be safe at home anymore. So my advice would be the next time he seems to be in distress, you need to call and have him transported by ambulance, and then make it clear to the hospital that you don't have the resources or ability to keep him safe at home anymore. Best wishes, please keep posting, there are a lot of great, supportive people here.

When I started down the caregiving role with my mother, spreadsheets became my best friend.

Maybe start by listing each of the words of the new vocabulary that you are seeing.

Make a column with the definition. Another column for who can help with each word.

After you get ahold of your Office for The Aging, plug their services in with each of the new vocabulary words, as to how they can help you with each.

Just a little bit of work every day on this master spreadsheet will help you see that at least the organization of it all will help.

Also, please remember that what your Dad wants, and what he needs could be two separate things at this point. It’s soooo difficult.

Best wishes to you.

Hopi, on your fear of loosing the house…. if you have been full time taking care of your dad (so you did not have a FT job and there has been no it’s filings that would show you worked for others) for at least 2 years prior to ever filing a LTC Medicaid application and prior to his being on LTC Medicaid, you will be able to file the caregiver exemption to any estate recovery (MERP) that the state or its outside contractor for MERP may attempt AFTER you dad dies.

As long as you (this means you & your purse only, not any of dads $) have the resources to afford the costs on the property, you can hold tight and continue to live in the house. MERP is an after death process, so you will need to keep track of all your property costs paid and do your best to keep costs at a minimum if your purse is limited. The state really cannot force you to move or sell but and…. this is mucho importante….. but the state will require that dad does a copay of basically all his monthly income (like his SS & any other retirement income) to the NH ea mo. Dad will have no-nada-zero of his $ to pay on anything on the property in his name. The copay requirement is what ime puts family & heirs into the predicament that the House needs to get sold as nobody has the time, wallet or interest in dealing with dads old house for an indeterminate period of time and beyond his death due to MERP. If there is still a mortgage (horrors!), property costs can be quite a sum $$$ due ea month and family end up putting it on the market. But if you have the means, you can hunker down on the property.

IMO You do need to legally have it established that you live in his home. Like your DL shows this. Perhaps move a utility or two into your name. I doubt he’s using WiFi, so get that into your name. Have your name added onto all property insurance so that should he move permanently into a facility, you can keep the policies. Trust me on this, having to get any new hazard policies when he’s in a facility, will be very difficult and very costly.

when you are looking for an ekder law attorney, as you will be dealing with Medicaid, MERP and exemptions, you need to find atty that has experience in these. Not in merely filing his LTC Medicaid application. That means they are familiar with how MERP runs and in property & probate laws for your state as they are going to have to be involved with that eventually after dad dies. I’d ask the attorney’s you interview specifically how your State does the caregiver exemption and what documentation is needed to establish your exemption.

Often elder law attorney’s are about asset planning and taxes…. more long term planning. That’s not your situation, your dad is at imminent need for care. Your in crisis planning mode.

Also it kinda sounds like dad was in a NH for rehab but has returned home, is that correct? If so, I bet you will have issues on getting him approved for LTC Medicaid. Usually LTC Medicaid (different than community based Medicaid) requires that they are actually residing FT in a NH for a LTC Medicaid application to go into processing. If he’s back home, it can’t get done as he’s not currently a resident in a facility. The community based Medicaid programs have different application system as it tends to depend on which program(s) he’s applying for…. Like PACE (day program at a community health center) has a different application than IHHS (in home care).

There is an Area on Aging in your region as part of your Council of Government (regional planning entity). AoA has loads of info on elder resources in your region. Contact them also for advice.

Hopi, IMO the caregiver exemption has twofold beneficiary:
1. to compensate a (1) family member who has given up working full time in order to in person care for thier elder. You stopped working so do not get a salary and no more build up your retirement and SSA.
2. the state benefits as well as otherwise the elder would b on LTC Medicaid which means the State pays the NH a daily room & board reimbursement. You being a FT caregiver saves the State $.

So you have had a FT job all this time, right? If it was reported income, so FICA, W-2 done, taxes filed, etc. all that is easily found by the State. IMO You won’t be eligible for the caregiver exemption. Part time job though I bet you could.

But nevertheless that home if it is your residence and you can establish that it has been via your tax filings, drivers license, bills, etc, then the State cannot make you move out. The issue will be that all property costs will need to be paid by you once dad goes onto LTC Medicaid as he’s now living in a NH and Medicaid requires him to do a copay of his income to the NH. That FT job (yeah!) enables you to now pay all property costs on a home that technically and legally is still in his name. It should continue to get whatever benefits he has on it too…. Like lower taxes as he’s over 65. I’d suggest that you speak with an elder law pr probate attorney who is very experienced with estate recovery aka MERP as how to organize and track all property expenses so that you can possibly file all as your own lien on the property or claim against his estate after he dies. Or if yours is one of the few that allow for an enhanced benefit deed aka Lady Bird Deed to be done. MERP is required to be attempted but how it’s done really is interrelated to state laws on property & probate and what your states administrative codes r on Medicaid. It’s something to clearly discuss with an atty ahead of ever submitting a Medicaid application for your dad. Wading through estate recovery isn’t a DIY.

also if your dads bank accounts do not have you as POD on them, pls pls try to get dad to the bank to get this done ASAP. And if he has term life insurance policies that have his estate as the beneficiary have them changed to you as the beneficiary.

Very difficult caring for a loved one alone. I did it for eight years and now I have the help of two family members. You will not be able to do this alone. It will get more difficult. I would think about placement for your dad. You can still be involved, visit frequently if you would like, take time off and know he is being cared for by health care professionals. You need a plan in place now. I would talk to his doctor, social service, and elder care. I have been caring for my mother for over twenty years and it would be almost impossible to care for her alone now since her decline. I hope your find a solution soon. Wishing you and your dear father the best .

Is there a counsellor at your hospital? A nurse who specializes in your dad’s ailment? Do you have a lawyer? If you’re having a hard time communicating with someone at the hospital—and hospitals are not great at communicating—talking to a lawyer may help. Additionally, reference librarians or someone at the Dept of Health in your state.

If Dad makes any money at all you have to use it to hire outside help. You can not do this by yourself. I used resources on this site to find an agency. Do not quit your job. You will be tempted to do so. No! You will need to have money to ensure you have funds and a place to live after he passes.

What he wants is irrelevant now. It is what he NEEDS and the fact that you cannot meet all his NEEDS. You will have to look into placement. DO NOT FORFEIT YOUR FUTURE TO MAKE HIM HAPPY!!! This will be the downfall of both of you. Call the office on aging and have them help you along. If he is bedridden he needs 24/7 care and it can't be you.