Hi guys, I’m reaching out to this group because I really don’t have anyone else to turn to for advice in my particular situation. I’m an only child, my mother passed away 13 years ago from cancer, and my dad has been living alone ever since. He’s always been the isolationist, do-it-all-himself type. Not social, and we have a tiny family to begin with, so there’s not really many people left in terms of family connections. I live on the opposite coast as him, so this is adding a layer of difficulty to everything.
Long story short, within a week's span of time, he sounded "off" to me on the phone, and we talked every day. I called the local police department and had them do a wellness check, where they found that his house was uninhabitable, and that he was ill. This was a rapid change as I had been home visiting about two months prior and everything was fine. They took him to the hospital where they discovered he had kidney failure, and he was extremely confused. This was over a month ago now.
They sent him to a short-term rehab facility after a few days in the hospital, his kidneys bounced back, still unable to urinate on his own without a catheter, his cognition has not bounced back much. Dementia, some hallucinations. Now clear of UTI's, so they don't believe those are causing the issues at this point.
Meanwhile, in the span of a few weeks, I’ve had to travel back to my home state, manage all his affairs (thankfully he did name me power of attorney two years ago, so that was all in place), and I do happen to be on his main bank accounts, but everything else he was using paper checks to pay for, moving money from one account to another every week to pay bills, very antiquated and refused to modernize. So I had to set everything up online, and some things are easier to do than others, as many of you probably know from experience.
Between figuring out an actual diagnosis (which seems impossible with neurologists being booked up 6 mos out), Medicare coverage running out, and the headache of selling my childhood house, it’s very overwhelming to me. I work six days a week at three jobs, and I can’t miss any more time off of work. All the paperwork to do with the nursing home he’s currently at has taken me a week to process to make sure I wasn't signing as a third party guarantor or whatever. I’m nervous about making all his payments on time being so far away, and I’ve never had this much money to have to manage before in my life so I’m feeling overwhelmed.
Many people outside the situation have asked me, “Wouldn’t it be easier to just move him closer to you?” That might be the case, but every state is different, and I feel like I’ve already gone down this deep rabbit hole in his home state, to up and change everything again and start from scratch makes me crazy in the head to think about. On the one hand, it would be easier to have him close, but honestly, I work so much, I don’t know what difference it would make at this point.
He’s extremely confused, sometimes he does remember things, but he calls me on his cell phone sometimes 20 times in a row and leaves strange messages, he still thinks that he’s going home, I’ve tried to ease him into the idea of being someplace like where he’s currently at, telling him, “Isn’t it easier to know you have help whenever you need it all around you? And to not feel so alone and isolated?”
I guess I'm just tired. I feel like I've done so much in 3 weeks' time — more than I've had to do in an entire lifetime in terms of these kinds of things — but I feel like I'm not even halfway up the mountain. I'm the kind of person that likes to get things taken care of, or I worry constantly. I'm not sleeping. I wake up in the middle of the night worried about payments not going through, or running out of funds and missing the Medicare application timeline, etc. and he running out of a place to live. Ugh.
Will this ever get easier? Just looking for support/encouragement, I guess. Thanks everyone.
It does not matter that you will not see him more what matters is when you see him it will be easier for you to do so.
And in a crisis you will be more available.
It is exceptionally difficult to do this one your own. I personally would look up, for his state. licensed Fiduciary and hire that person on to handle things is this is too overwhelming. You mention that there is money; use it for the end of his life and to assist you. I understand what you are going through, but the real answer is that you ARE doing it and sounds you are doing it WELL. I managed everything for my brother when he was suddenly diagnosed with probable early Lewy's Dementia. In his case he was 3/4 of our long state away from me, but for all intent and purpose, flying back and forth that first 6 months, it seemed a long, long way away.
I dealt with all the issues you are dealing with, at his request, as I was suddenly made his POA and Trustee, having at that time really little knowledge of what I was stepping into. After one year everything was done, set up, running smoothly. 6 months later he was gone to his rest.
I understand to my soul all the confusion, anxiety and fear you are dealing with. My heart goes out to you and I wish you luck.
I would definitely use your Dad's funds to transport him as close to you as possible. Medical transport is expensive. You will need to take time off to do this or hire someone to do it -- there's no other way. It will be difficult for a while but then once he's settled it will improve. You may be able to compensate yourself from his funds so make sure to discuss this with a certified elder law attorney and keep very detailed and accurate records of all expenses.
You will need to talk to a Medicaid Planner for your state about what the move means for him if/when he needs this assistance (and many elders eventually do).
You are doing yeoman's work and he probably will never know how blessed he is to have a daughter like you putting herself out there and going to bat for him when it's been so stressful.
Hang in there, and keep getting solid advice especially about not losing your income over this.
Do your jobs offer FMLA for caring for dependents? I got a week off this way, not using vacation or sick time.
Re: “I’m nervous about making all his payments on time being so far away, I’ve never had this much money to have to manage before in my life so I’m feeling overwhelmed.” You should be able to get most to all his payments on autopay.
I like the idea of a geriatric care manager and also perhaps a financial advisor/ money manager even for a year to set up money from sale of house so that it is invested in a way that makes sense. I think there are banks or financial advisers who will even oversee sale of house, possessions, etc. Also for tax filing both this year (for 2024) and next year (for 2025) as I assume he won’t be able to help locate any of his 1099s, etc.
I don’t fully understand “Medicare ran out” or what his financial situation is.
Given he can’t urinate without a catheter, unless that clears up soon, I am concerned that UTIs are going to be all but inevitable, leading to more kidney function decreases, etc.
Good luck!
That said, you obviously had a very full schedule to begin with (working 3 jobs 6 days a week!) so to be now regularly waking up in the middle of the night unable to get back to sleep is worrying. You have to do what you need to do for yourself to make sure you don’t crash and burn.
You mentioned the sale of the home and that you've never had to manage this much money. Is it enough to hire a geriatric care manager to take some of this on? Search that in the forum, I had asked some questions about it and several who have used them successfully for long distance answered.
I agree now is not the time to try to move him closer to you but if you can get some boots on the ground it may help.
In the meantime I have not had to deal with these issues long distance so beyond my thought of a care manager I don't have other suggestions other than to say it sounds like you have done an absolutely tremendous amount of work and I hope you can get some respite soon 🙏