BACKGROUND (next six paragraphs, not necessary to read): Dad, 97, is almost out of money. He lives at home with excellent paid caregivers until 6:00 p.m., then an unreliable (67 and flaky) live-in caregiver who arrives home from her other caregiving jobs at 10:00 p.m. We have a medical alert service and cameras.
So far, Dad is in good spirits, sweet, passive and does not wander. He has dementia, is incontinent, and is very mobility challenged, though he can “walk” short distances. A recent power outage exposed flaws in our care systems. For example, Dad’s Albuterol treatments required multiple fire department interventions (to power the compressor) and our saint of a daytime caregiver transported him to her home til the power was restored days later (I live 150 miles away with a disabled husband). Neighbors were quite involved, but we should not be dependent upon good people’s generosity as a plan.
I have asked Dad’s physician for his recommendation as to whether Dad should remain at home. The physician stated that we should do all we can to keep Dad at home, even given that night-time monitoring is marginal. He said that facilities do not provide the excellent environment Dad has in his own home, with the A-1 daytime caregiver. He is a geriatric physician and has dealt with this a lot, and that if Dad were his father, he would not place him now.
I have asked the Elder Law attorney for his recommendation, providing a good financial summary. He said that until Dad has a “medical incident” with a three-day hospital stay and step down to rehab, Medicaid cannot not kick in for home care. Dad has enough VA-Trust remainder money to last perhaps six months status quo, but it’s going fast. According to the lawyer, Michigan nursing homes are $8-$10K per month. Dad has $10,000 remaining. All facilities I have contacted have two-year or more wait lists for voluntary private pay. The lawyer reiterated that the only way to get Dad into a facility was via medical incident. More than five years ago, new deeds for Dad’s home were executed (but not yet recorded per lawyer instruction) as part of this lawyer’s VA/Medicaid estate plan for Dad. Dad gets VA Aid & Attendance and is a disabled WWII veteran.
I have spoken with so many agencies, facilities, advisors, social workers I am numb. None of them can agree what I should be doing or planning, leave alone how to pay for it. When a physician says, “Keep him at home” -- it’s hard to do otherwise. I know I need to stop paying for some of Dad’s expenses, and I am burnt out from other caregiving complications in my life. I have read through so many answers on Aging Care, and I’ve burned hole in the universe with my research. Either am resisting decisiveness, am just not confident, or have to have my head in the sand. I am Dad’s POA and I’ve worked very hard to give him a happy 9th decade. I am burnt out trying to figure how to manage.
I love my Dad, but the feeling has become a dead kind of thing. I hate to wish he would die so I don’t have to deal with these things alone. I know I will suffer the rest of my life for these unwanted wishes but that’s not my biggest problem right now. I want my husband and I to enjoy what we can of what’s left.
RESTATED QUESTION: Can I resign my POA and let Dad’s county know I can no longer oversee him and tow the line of making things magically work? What will happen if I relinquish my POA? Does anyone have actual experience with this? Or second-hand knowledge? How badly does a court-appointed public guardian treat an elderly ward and the family who walked away from all but love?
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CPA may be a less expensive choice for bill pay. They will pay from an account or pay the bills and present you with one monthly bill and listing of all the payments it covered.
Spend the money on the attorney so that if Medicaid comes into the picture along with VA, you are not caught off guard. Not saying shady stuff, many attorneys recommend based on current law. Over 6 years ago, the states weren't using contractors to claw back nearly as much. My concern is also if you are asserting years worth of ownership and your dad's property got assessment reduction or freeze due to Vet or Elder or homestead, you could get hit with big retro assessment of past due property taxes for not recording ownership but asserting a long standing relationship for Medicaid protection. A friend didn't update deed after his dad's death and got hit with 3 years of back taxes by the city and county because the property ownership transfer was not properly recorded and he owed over $10,000 overnight!
Answering some of your questions:
VA: Yes, I contact them a lot. I find that unless I have identified a specific program beforehand, programs are simply not offered up as a smorgasbord for me to choose from. So I have to do diligent research first (ha, I’m learning I’m not so diligent and I was a government librarian). It seems without fail, Dad’s pension income is about $200/month over the income limit for more comprehensive services. Of course they don’t count Dad’s VA Aid & Attendance (A&A). Dad’s income is quite negative because of caregiving costs. From what you have brought up, I’m afraid that the VA/Medicaid certified attorney may have done something shady. But that’s another paragraph. You’ve given me good cheer to keep pursuing the VA route by stating our specific needs (night time, power outages, reverse mortgage advice). I actually spoke with a VA counselor who specialized in finance, and was simply told how to do Internet research 101 to locate non-VA sources for reverse mortgages.
ELDER LAWYER FOR BILL PAY: How I wish we could afford this. Maybe I’m being penny wise and pound foolish (PWPF). Someone please tell me it’s not good to be PWPF because I am the offspring of Depression era, first generation frugalists who would see elder law as an unforgiveable indulgence.
WHOLE HOUSE OR STANDBY GENERATOR: Wish we could afford this, PWPF? Also, ahem, from what you say the house belongs to the government.
UNRECORDED DEEDS: From what you have suggested, I am really scared about having to pay the VA back for A&A. Let’s see, since 2011 that’s over $126,000. My Mom died in 2010 and Dad lost it. I was raw from caring for her, sleep deprived, dealing with Dad’s mental state, and insane myself. In desperation, I attended a local “Elder Care Expo,” held at a very reputable looking nursing home in an affluent community. I spoke with a VA rep, who told me Dad’s income was $200 over the threshold. Well, at the VA advocacy table next to them, a rep -- who overheard my conversation with the VA rep -- told me that if we pay out more than Dad’s income for his care, it isn’t true Dad wouldn’t qualify. Did that ever get my interest. I was referred to a certified VA/Medicaid planning attorney. I researched the credentials via the Bar and everything else I could track on his record, and he looked good to me. If indeed (pun not intended) the deeds are garbage, I am in big trouble and squandered Dad’s legal $$ as well as just wasted six years of my life being a “VA Fiduciary/Custodian.“ Luckily Dad’s home is worth a tiny bit more, but not in 2018. The attorney had created two deeds: One in the event of Dad’s death, the Second in the event he had to be placed somewhere else. Both deeds convey title to my sister and I as beneficiaries. The trust this lawyer created is an irrevocable trust. The Trust instruction letter said that as beneficiaries, the moral choice would be to use Trust funds for Dad’s benefit – not a problem for us as it IS Dad’s life’s work and we love our Dad. I feel like such an idiot because I never questioned that the lawyer never instructed us to file the deeds, nor did he place Dad’s house into the Trust. So something is likely amiss, I am sick, and Garden I will definitely PM you, thank you for that offer.
THANK YOU, I am always humbled that people actually read queries and respond in such helpful ways. I promise I’ll respond to anything anyone sends hence, I just may be slow. And maybe will take a trip to Tennessee, land of Utility Company decency.
Thanks for the information on generators. It was a hard decision at the time, but we opted not to get one. There were a lot of issues to factor in, even though I would have felt more comfortable getting one.
Now the issue is moot since my father passed away about a month ago.
Thanks for taking the time to offer an explanation though. I think Tennessee is more favorable to people in need than Michigan. Utilities here have some very qualified personnel and handle some real serious emergencies during bad weather, but they also won't even take phone calls during emergencies. One can only leave word and wait.
And the standard line when there are power outages is that it's "expected that the power will be restored by 11 pm tonight." I heard that for 4 days in a row before the power was restored the following day.
Medical priority for electrical service is fairly common setup here and in surrounding states. We usually lose power infrequently in ice or wet snow storms, but sometimes it's out for a week. We don't have senior rates for electricity but TN utilities are generally non-profits run by or under local government control and no politician wants grandma dying because of a power outage.
Standby generators are expensive and unfortunately out of reach for a lot of people who need them. The cost depends on how much generator you need. If the house already uses a gas furnace for example, the standby generator itself may cost less than $2000 with the installation costing $1500-$4000, range depending on whether you already have natural gas or need to buy a propane tank. If your LO depends on an oxygen generator, CPAP, ventilator, nebulizer, assist lift, panic alert, etc and you live in an area where power outages are frequent or long term after storms, I believe you should consider a standby generator. Even if you get a manual gasoline generator that just powers the house's lights and basic outlets (no central heating, no water heaters, no stove) to reduce costs, having the lights and outlets powering for those critical devices can make a big difference.
I tried to keep my father at home as well; he wanted to spend his last days there. But as he declined and became immobile, staying at home became impossible. In retrospect, there was no way that any team of people could provide the care he needed had he remained at home.
Compromising, I hired a company which provided 3 caregivers, 1 of which was outstanding but smoked, and two totally unreliable caregivers, one of whom also misrepresented the primary qualification for which I needed help.
Coincidentally, my father's health was declining. It was very difficult to make a decision with so much on the table. I was overwhelmed; from your description, it seems you're in a similar state.
But, PLEASE, take time out for yourself and don't think about decisions. Enjoy the beautiful weather we have now, do what relaxes you and then rethink your plan. You don't need to escape from caregiving; you just need to get off the high speed Caregiver Highway and find a nice little back road lined with lilacs, wildflowers, and enough peace that you can think clearly to make a decision.
Fortunately, I made a good one and found this excellent senior community.
I'm in Michigan and have recent experience with what I'd consider an outstanding nonprofit senior community. I'll PM you some more information in a few minutes. This is the ONLY facility of the multiple ones with which I've had experience with my mother, sister and father that has an intelligent, helpful, results oriented social worker.
She's truly a problem solver, is very compassionate and understanding, and works well with people. She is REALLY acting in a helpful capacity as a REAL social worker.
When my father was dying, I was overwhelmed with the support I got, including a special tray of hot water, coffee, and goodies while I was sitting with him one night. After his death, the DON helped me pack his things.
Yesterday I received in the mail a little statue of a praying angel, as a token of their compassion for my loss.
I can't recommend this facility highly enough (not the most elegant choice of words, but I think you get my meaning).
Even if you're not close enough to visit regularly, the Deacon and Chaplain would probably visit on your behalf. The Deacon was the one who found a music and beautiful scenery channel on the onsite tv service. These two people were beacons in a fog of confusion, anxiety and end of life issues. (And I'm not religious, at all.)
I know of someone who was able to get in fairly quickly for memory care: this was either last year or the year before.
Techie, what state are you in? Tennessee? I think you might have some more forward thinking utilities than we do in Michigan!
When a windstorm knocked out power last year, I was faced with a situation similar to 50sChild and the need for power for the nebulizer. Even though we have senior rates, we didn't have senior service. Restoration priority was not according to age, but rather to the areas most heavily affected. I couldn't even reach a live human being when I called the utility company repeatedly to inquire about backup resources.
Even still, unless it installed what I believe is called a standby generator, a smaller generator would only have powered limited appliances, a back up one would have cost thousands of dollars and required connection to electric (and I believe) a gas line. As you noted, these generators are also very expensive. I did research on this and asked construction friends who knew more about the subject that I did.
I know of one ward that was transported directly from the hospital to a NH over 200 miles away because that was the only place a bed was available. Most of his friends and extended family could not easily make that trip, ward was never transferred to a closer facility, never had a opportunity to pick anything from his home (even clothes or photos) before everything was auctioned. Fortunately, someone told the auctioneer where the ward was and he mailed some clothes and all the framed photographs to the ward at his own cost. When someone becomes a ward of the state, there is no one person "responsible" just a group of overworked people - and just like when "everyone" is watching a child at a party that person can fall through the cracks because everyone assumes someone else had their eye on the child. The system does make sure the ward gets adequate care (at least from a medical and physical perspective), but it doesn't allow much personalization of that care.
Have you considered engaging an elder law attorney to handle arrangements/bill pay for your Dad? These attorneys frequently act as guardian-ad-litums during guardianship processes so they are familiar with what needs to be done. As POA you can hire someone to handle certain duties subject to your weekly/monthly review. If financially viable, this could reduce your stress and hours spent dealing with the routine and the research. They would do the research and provide you with options to choose between.
Consider a reverse mortgage on the house to raise funds to keep Dad in his home.
Is your father's house on the Power Company's medical list? The company maintains a list of people with delicate medical conditions or medical equipment needing power (you need a letter from the doctor to document the need). This list is used to prioritize repairs; often if the company cannot restore power within a given time frame the electric company will provide and setup a temporary generator.
Depending on how large the house is, a whole house emergency generator can be installed for $6000-12000. Natural gas is less expensive than propane if it's available. Since your father is a WWII vet, there may be professional resources that would wave their usual fees and install the generator for just actual cost reimbursement. The VA or VFW can often assist in finding these resources. I've had good luck in the past just calling up a business, explaining the situation, and asking if they could possibly donate their labor costs. When asking for help setting up a Katrina refuge shelter, many plumbers and electricians donated a lot of materials in addition to their labor.
From reading your post, I do not think you would find turning guardianship over to the state very workable. Once you have taken that step, you will have no voice at all in your father's care. The state has a play-book which usually includes putting your father in the first nursing home they can find anywhere in the state and then taking over and selling all his assets. Some states will return any monies remaining when your father dies to the heirs, others just keep it.
As a WWII Disabled Veteran, have you asked the VA? They too have legal aid and they have their own Nursing Homes. Yes, there will be a waiting period, but they would advise you to apply today, ASAP - be aware that Dad's House will be forfeit, but he would be taken care of.
I inquired for my dad when he was widowed and that was the advice given to me at the VA Nursing home.