I am emotionally, physically, and financially depleted, and I honestly don’t know how much more I can carry. Caring for and managing everything for my father has consumed so much of my life. Along the way, I lost the career I had built for 20 years due to my now constant anxiety and nervous system being completely shot. My father lives 1,200 miles away in Florida because that’s where he has lived for 20 years and assisted-living facilities near me cost approximately three times as much, and neither of us could afford that. I travel to see him about every eight weeks, but the flights, transportation, missed work, and other expenses have reached the point where I simply cannot afford to keep doing it. Now we are facing another crisis. My father requires assistance with transfers, and during a recent transfer at his assisted-living facility, he fell and sustained an L2 compression fracture in his back. He was taken to the hospital and then discharged back to the same facility. I was not included in the discharge planning or even told by the hospital that he was being sent back. The facility had called only to say that he had fallen and was going to the hospital. They did not contact me afterward to tell me that he had a fractured back or that he had returned. Now the facility is saying that he needs a higher level of care, which he cannot afford. They told him this, not me. They have not contacted me since the fall two days ago and shamefully I haven’t had the emotional bandwidth to call them. I am working up the strength to do that tomorrow. I just know what lies ahead and am trying to prepare my life to be turned upside down again. I alone in a matter of 7 days flew down, found him a facility, moved him out out his apartment and into the alf two and a half years ago spending thousands of my own money. Now I am left with the task of trying to understand his medical needs, find appropriate care, obtain records, speak with an ombudsman and possibly an attorney, and figure out how any of this will be paid for—all from 1,200 miles away while still trying to work and maintain my own life. I love my father, but I have reached my limit. I feel guilty even saying that, but I am completely burned out. I mean completely burned out to the point it takes an extreme effort for me to even want to get out of bed and face what the day will bring. I don’t have unlimited money, energy, or emotional strength, and I cannot continue being the entire support system from another state. He is a veteran and already receives aid and attendance, has no savings and is over the income limit for Medicaid. I logistically and financially cannot get him here where I live. He also calls me demanding things from me up to 15 times a day to the point where I have had to block him while I’m at my part time job. I am in constant fear of him being in a nursing home so far away and alone without me there to check in on him. He is currently in an Alf with a standard license. If anyone has been through something similar—especially dealing with an assisted-living injury, a sudden need for a higher level of care, or long-distance caregiving—I would be so grateful for support, advice, resources, or even just reassurance that I’m not a terrible person for feeling like I cannot do this anymore. Thanks for listening
Are you even his PoA?
Why can't he go into a VA home? If he makes too much money to qualify for Medicaid, there's such a thing as a QIT (Qualified Income Trust) where his excess funds go into a trust reserved to pay back Medicaid upon his passing. He could even qualify for LTC + Medicaid. If he doesn't have friends or gets out and about then what difference does it make what state he resides in?
For you to continue his care I would have these criteria:
- You become his DPoA with full authority to do any and all transactions and decisions (and he has a Advanced Healthcare Directive and DNR)
- He takes a cognitive exam so that you know where he stands
- He moves to your zipcode (or as close as possible).
- He either starts paying you (with his "excess funds" or uses a QIT)
Anything less than this and I'd walk away and let him deal with things on his own.
For yourself: please see a therapist so that you can identify and defend clear boundaries with him (and I'm going to guess other people as well).
I wish you all the best as you get your own head on straight before sacrificing the rest of your life for his unappreciated care.
There are VA Medical Foster Homes.
These are peoples homes that have been approved by the VA.
The homeowners are trained, vetted by the VA
The Veteran moves into the home and the Veteran pays the homeowner.
the Veteran gets the care they need in a home setting. Far fewer people. More attention and the cost is less than a facility.
As far as I know there are not a lot of them, at least in my area, but that is changing.
You can call the Medical Foster Home Program Coordinator (224-610-3784) the email for this person is John.Zidek@va.gov
Your father will need to be moved to a skilled nursing facility. It is his income that is used (and considered) to pay for it. If it is too expensive for him, then you help him apply for Medicaid assistance, which will make up the difference. That is, he pays everything he has, less about $20/month for spending money, toward the cost of skilled nursing, and Medicaid will pay the rest.
I have not done long distance caregiving. I cannot even imagine how you do that. If at all possible, (I know you said it is cost prohibitive for facilities near you) I would try and move him to a nursing home much closer to you.
You might be successful in getting Medicaid benefits for him in your community, but the catch is that he must already reside there before you can even apply.
You can just let go, and let the social worker at his current ALF figure out arrangements for him, or let Adult Protective Services make decisions for his care, but then you are left out of any of the decision making. I assume you are staying where you are, 1200 miles away from him because you have better income opportunity there. Perhaps it is worth spending some of that money toward getting your father situated in a good care facility, and ease some of your stress and worry. Having him closer to you has got to cost less in time and money and job security than travelling to see him every eight weeks. When the next major thing happens, how much time are you going to take off from work?
The one thing making this remotely bearable as I am asked to be their med. expert, care planner, pseudo-lawyer, home maint. person, IT person, lawn/yard/snow maint. person, contractor, electrician, plumber, durable fin. & med POA, emergency contact, and, I almost forgot, hold a FT job w/ my own home/life needs, is the county Aging, Disability, Resource Council (ADRC). A must when navigating MEDICAID. Work with the ADRC in the county your father lives in.
There are also care-giver groups that you might be able to meet with in your area for support. They will listen and understand in a way few others can.
You mentioned your father's income is too high for Medicaid. Just to clarify, is it his income or his assets that are too high?
If his income and assets are to high for medicaid, then as long as he can pay for, between 1.5 and two yrs. at the ALF they should take him. Once his assets run below the Medicaid threshold is met most states don't allow him to be kicked out if he is already in an ALF Just make sure the place he at os not am RCAC licensed facility but is CBRF licensed. CBRF facilities can care for ppl as they advance through dementia and limited mobility. My dad was asked to leave an RCAC because his needs exceeded their care level. He was 3 mo. away from needing Medicaid and no place in my county would take him. Found one place 45 min away that was willing.
Be warry of care "homes." Granted my sample size is one, but the company that managed it had 60 converted houses across seven countries with three maint. ppl. The house was rotting out around the ppl that were there. If you can, visit any place he might go.
Ask the ADRC Medicaid rep to explain the financial part of Medicaid clearly to you. Coordinate a Medicaid functional assessment for your dad to see if he qualifies. For Medicaid to kick in he has to meet the functional and financial requirements. File for Medicaid three to six months before your dad needs it. He won't qualify yet, but they will take a financial snapshot and do the 5yr. look back at that time.Everything that follows will be based on that.
If you have not done so already, get logins and pws for all his financial and medical accoints if you have Durable Financial POA and medical POA. Get a DNR signed off that is his wish. If you haven't nailed these down do so before he is deemed mentally incompetent. Then, download and save financial statements for all bank acts., investments, life ins. pensions and anything else going back five years. If you are not tech savvy, organize this into binders or folders or what ever works for you. I got a used multi-page document scanner, scanned any paper docs, and put them into a Google drive, so if my pc crashes or my thumb drive dies, I dont lose everything. Plus I can access my Google drive on my phone when some asks me for his ID, Ins. card info. or email a doc to someone on the fly. I also scanned all military docs, birth, death, marriage, divorce, for him, you, spouse(s), grandparents, siblings, Soc. Sec. cards. Anything official. Make copies for the binder/folders, keep originals safe. Save any receipts for expensive purchases or to explain large $ moves into or out of his accounts for the 5 yr. look back Medicaid will do.
As far as his direct care, contact hospice places near him. Belive it or not, hospice is not just for the dying. If he has limited cognition and or mobility, hospice can support the care givers where he is at with extra care. Its free when he goes on Medicaid. Made a huge diff. for my dad.
You can do this. Reach out for help.
One thing that may help is separating what you are responsible for from what the facility, hospital, VA, and other professionals are responsible for. You should not have to personally solve every part of this crisis.
Because he recently had a fall and an L2 compression fracture, I would start by getting the records from the hospital and facility and asking for a formal care-plan meeting. Ask specifically what level of assistance he now needs with transfers, toileting, bathing, mobility, and other daily activities, and whether the facility can safely meet those needs under its current license.
I would also ask the facility, in writing, for its assessment of why he needs a higher level of care, what the deadline is, what alternatives they can offer, and what happens if he cannot afford the proposed placement. Having everything in writing can make an overwhelming situation much easier to track.
Since your father is a veteran, I would also contact his VA social worker or VA Caregiver Support resources and ask about every benefit or placement option for which he might qualify. His Aid and Attendance benefit may be only one piece of the available support. I would also contact the long-term-care ombudsman in his Florida area. An ombudsman can help you understand your father's rights in assisted living and can sometimes help facilitate communication with the facility.
And please don't overlook your own limits. Blocking his calls while you're working doesn't make you a bad daughter. Setting specific times when you will return calls may actually be healthier than being available 15 times a day. You can love your father deeply and still say, “I cannot personally handle every need anymore.”
Most importantly, feeling burned out does not mean you don't love him. It means you've been carrying an unsustainable amount of responsibility for a very long time.
You don't have to figure out his entire future tomorrow. For now, focus on the immediate questions: Is he medically stable? What level of care does he require after the fracture? Can his current facility safely provide it? Who is responsible for coordinating his next step? And what financial/VA resources are available?
You have already done an enormous amount for your father. Asking other people and agencies to take responsibility now isn't abandoning him. It's recognizing that one person cannot be an entire care system.
The VA operates some skilled nursing facilities in Florida. My girlfriend's Dad lived in the one in Gainesville, Florida and she was happy with his care there.
It might be worth asking if your Dad would qualify for one of the VA operated SNF in Florida.
I would also check to see if your Dad qualifies for VA SNF in your home state.
I also oversaw care for Mom out of state and did the 8 week visits. It was brutal. One time I rebelled and didn't visit for 4 months which was wonderful.
I'd do whatever it takes to get Dad transferred to your home state.
He was a vet and our state has a VA Nursing Facility, it is operated by the state. I applied and the paperwork was very intimidating but I finally got it filed. He was able to be transferred to the VA facility within about 6 weeks after turning in the application and I was thrilled. They were wonderful and believe me he was not an easy patient. I marveled at how calm they were no matter how unreasonable he was being. The bottom line, if you can get your Dad into a similar facility I would definitely do it. My husband had run out of everything the insurance and medicare would pay so I was paying out of pocket, about $12000 per month. This place was not a palace but it sure cost a lot.
What really got me is the care was indifferent, I was there for 4 - 6 hours each day so I could make sure things were taken care of but the cost was unsustainable. The VA facility was SO much better, the food, the attention to his care and the patience they showed him was fantastic.
If you can get your Dad into a similar place I believe he'll be much happier and if it's like here, better care too. I also consulted an elder care attorney and he was quite helpful. I would highly recommend that also.
My husband died in that facility under hospice care. They allowed me to stay with him at the end. They'd left the bed in his room open during the whole time he was there although it was a 2 bed room and they gave me the opportunity to be by his side the last days. They refunded his unused portion of the charge for his last month and I donated it back to the facility to go toward activities for the patients.
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