After reading everyone's comments.....I'm feeling a little scared. I have spent the last 3 nights just looking up caregiver resources, Medicare, Medigap, POA, then I had to "find a home" for his 3 cats bc I am moving him to Florida to live with me and my boyfriend in a 2 bedroom with my 3 cats. Mom passed suddenly in 2013. Soon after I moved to Florida and left dad alone (only child) to fend for himself. His blood sugar went to 1300 and he collapsed. Flew up immediately to see him in the hospital. I didn't even recognize him. Then I came to his house to stay....He is Type II Diabetic.....there were cinnamon rolls on the counter and a loaf of bread and 2 slices of pizza in his frig. NOTHING ELSE. There were cobwebs in his bath tub. The litter boxes hadn't been changed for months. All of his white tshirts were yellowed bc he just kept wearing the same thing for weeks at a time. The guilt of not being aware of his decline debilitating at times. I have no idea what I'm doing. I keep thinking someone is going to knock on my door and tell me what to do.....No one is coming are they......
30 Answers
Helpful Newest
First Oldest
First
I moved them to be nearer to me and his brother, who isn't so fit anymore himself. Anyway, I made the decision to move them in June 2020...it took me until Oct to get them a place and set it all up. The paperwork took me four months. Then the drama of the health care issues set in. It's been SO hard on my life, my relationship, my personal time, my physical and mental health.
I wish someone had told me before I made this big decision. They'd have been better off, frankly, in an assisted living kind of place in MO, even if that meant they rarely saw me...and it would have been better for me too by far. I am just warning you that this level of self-disregard he's showing indicates that you can't make him happy all on your lonesome. I'm an only child too, and it's gruesome to see an old person circling the drain.
All I can say is that I've learned to set aside a certain number of hours per week and that's that. I'm down to abotu 15/week right now, which feels like heaven after what I had been going through. Most important thing? Setting up in-home care workers. In IL, that's through the county's senior services. They've literally saved me from a complete meltdown.
Not trying to discourage you at all. I get the feelings that are driving you. But remember: life is for the living, and he's already spent most of his life energy, whereas you've still got a long way to go with yours.
Self care isn't selfish. xoxo Best wishes.
Then take in the information the hospital gave you, assuming that someone did speak with you, as well as what assessments were made while he was in rehab (regarding health issues that are in play on top of the known diabetes along with where his current and projected self-functioning baselines are at).
You’ll also most likely have some follow-up appointments that are established with his primary care physician and whatnot shortly after his discharge. I’d try to get those changed to Telehealth ones that can be accomplished in the comfort of his home/familiar surroundings with you sitting right beside him on the couch. At 82-years-old your dad may be in the early stages of dementia, Alzheimer’s, suffering from depression or a combo of any of those at the very least. Then again, he might not and it was all a matter of him not monitoring his blood sugar, taking his meds appropriately and eating right (obviously) that he merely spiraled downhill without actually knowing it re: diabetic confusion.
The time for concrete answers should come from that discussion with your dad’s doctor in terms of what is and isn’t in play and how you’ll need to address those issues. I’d press the doctor for bluntness on his or her part as to what level of care your dad needs based upon X, Y, Z medical issues. And sadly with his: age, glucose level upon ER admission, condition of his home/clothes, hospital and subsequent rehab stints I’d brace yourself for some measure of delirium to be still in play even now—that’s been pretty normal for me to see in my parents during medical emergencies/rehabs though it’s still disconcerting whenever it happens. I mention this so you’re aware that it may take him awhile to adjust to where he used to be mentally or you may find yourself having to adjust to his “new” normal as some never revert to exactly where they were before the event(s).
Once you have these facts in mind you can move forward. Only you can know how much time you’ll be able to provide overseeing the care of your dad with the answers you receive from his doctor(s). If it’s financially possible, I’d hire caregivers to help you for a few hours a day so you have time to step back both for your own needs as well as to observe him from a distance for the first month or two. Let him adjust and yourself adjust to this new scenario. Reassess every couple of months and plan accordingly when possible. I wish in retrospect I had done that with my parents. Instead I jumped in headfirst and thought I could do it all...7 years later I find myself questioning why I thought I could do it all and handle everything. I should’ve reassessed things every few months and made changes when and where I could.
No matter what lies ahead for you, I wish you and your dad the absolute best and hope this helped in some small way.
ADVERTISEMENT
While he is in rehab have him evaluated for 24/7 care. Where I live rehabs and NHs are in the same building. Have him transferred to the NH side if its found he needs 24/7 care. If he has money, you will need to use it for his care or apply for Medicaid. This will give you time to do a little research without being overwhelmed.
Medicare will go with him to Fla. His Medigap maybe not. Supplimentals are a State thing. States determine what insurances can write policies in their State. You need to call his Medigap plan and see if its offered in Fla. Medigap nor Medicare offer prescription plans so he is paying for a separate one. That will change too. Medicaid does not cross over State lines. If you think u may need it, check with FL to see about residency requirements.
POA needs to be assigned by Dad and he needs to be competent to do it. But its a great tool to have. Makes life a little easier. Otherwise its guardianship and thats expensive. Medicaid allows Dads money to be used, I think though u have to win.
The things you describe when going thru his home are things I see happening with a person who is not treating his diabetes correctly. He would have been confused, almost Dementia like. I am surprised he didn't collapse before. I hope that once he is stable and eating correctly, he goes back to normal. But then this could have all been brought on by Dementia.
I would not have Dad live with you permanently. If he has the funds, I would place him in an Assisted Living near you. Move him right in when u get to FL. He is used to being on his own. Check to see if FL Medicaid pays for AL care in anyway.
Your County Social Service office can give you info on Medicaid and maybe help with other resources. Your county Office of Aging maybe able to help with insurances.
If daily assistance is required for a short term - ok, try your home. But if his needs are ongoing, already high, or increasing - I'd consider an assisted living residence instead. The bottom line is that if he needs help, he needs help & your place will become his Assisted Living anyway - staffed by you. Or maybe managed by you & a team of aides.
It's all going to be a big adjustment & time of change. Many here have been through it. Keep reaching out & remember you can't fix it all for him. It's just rotten old age 🙁.
Facilities fees can vary widely. Your dad may be a candidate for MC or LTC. Research faith-based non-profit facilities first. Many have been around for decades and are well-run. They are usually backed by a larger denominational support structure but see the care as a mission. You don't need to be their religion (or any religion) to be a resident. My MIL is in an awesome one. Sometimes facilities in more rural areas are less expensive.
Please don't feel guilty -- there was no way for you to really know what was going on from so far away. You did nothing wrong. What you probably are feeling is grief and just about everyone on this forum knows what that feels like. I wish you wisdom and peace in your heart as you move through this situation.
Second on feeling that the rehab seems to be somewhat disinterested, you are probably correct. Your dad is a noncompliant diabetic. Rehab well they’ve seen this before and know that for a noncompliant diabetic it’s 5 steps forward then 10 steps back. That he is up and walking is terrific but if it means he’s up and walking to get a candy bar, he’s gonna be back at the NH but in a wheelchair after an amputation related to his diabetes.
Diabetes if it’s allowed to run wild so to speak really takes a toll on their whole body, from eyes to toes. Loosing toes really does happen for diabetes that insist on staying noncompliant. I’d try to get him to see an endocrinologist rather than initially seeing an internal medicine MD if at all possible. He needs to diabetic panel labs run to see how his whole system has been affected by his diabetes. He also should see an ophthalmologist that is a retina specialist to see if he has diabetic retinopathy, it’s really common and insidiously silent as it makes you blind.
If you are definitely moving him to FL, then I’d suggest that you find doc’s in FL and start to schedule his appointments now starting in May & thru the summer. Trying to find docs is a real mice maze. Probably the easiest is to try to get him as a patient in a Health science center affiliated with a medical school and their teaching hospitals. They will take MediCARE and will have set ups available for indigent. As well as a full slate of specialists and full lab with techs to do whatever blood work, X-rays, scans, etc needed within their system. Whatever you do, do NOT ever sign off to personally be responsible for any copays or payments for him.
That he has $ between his SS & Teamsters pension is great. Plus it lets you know that he will not need Medicaid. His place in Missouri will need to be sold. But for now, I’d put that on page 3 and deal with it after you’ve got him into a facility in FL. There’s only so much of you that can be there to do things. While you are there right. Ow, I’d suggest you drive around his neighborhood and take photos of houses up for sale and get the Realtors #. These are the ones you call to find an agent who can work with you.... like one that can find a cleaning crew to come in and clear it out and someone go to get the inside minimum market ready. A good Realtor will know folks who can do whatever and they place a workmans lien on the property to get paid, should your dad not have the $ to pay up front. I’m assuming he owns the house totally outright with no debt / mortgage on it. Most areas in the US right now, there’s no deep inventory on homes so it can probably be easily sold before EOY.
Bringing him into your apt will mean all 3 of you shift to a diabetic friendly diet. A ton of cookbooks out there for diabetes. A book I personally like is “Sugarbusters”, 2003 edition, it’s not technically on diabetes, it’s more on getting out of obesity but ties into diet to control ones diabetes; it’s not a cookbook with recipes per se but more the science as to how your body is affected by sugars and fats. The half price bookstore type of places seem to always have copies as it was a huge best seller a decade+ ago.
id suggest that you try to have his living with you life’s to be limited to the summer with the goal of having him in a facility before September. All this will be quite challenging. It’s basically a full time project. Going to be hard on your relationship with your BF so keep communication going & upfront with him.
Is dad a Veteran? If so the VA may be of great help. If he is a Veteran depending on where and when he served you/he may get a LOT of help or a little help. They are expanding the reasons a Veteran can be classified with what is called a "Service Connected Disability" and there are a lot of diagnoses that can be attributed to service. (diabetes happens to be one of them) If he is a Veteran contact your local Veterans Assistance Commission and they can help track down all the paperwork you need.
**Ok, read through the comments and you did mention he is a Veteran. Contact the Veterans Assistance Commission. As I mentioned they have expanded the classifications and a Service person did not have to be "in combat" to have a "service connected disability"**
I suggest that you try to have him kept in rehab as long as possible to give you time to take care of what needs to be done before he gets home and faces a move.
Is your dad willing to move? Is he willing to sell the house? If the answer to these questions is NO you might have a bit of a tough go. Unless he is declared incompetent you can not force him to sell the house, you can not force him to move. This might also require you talking to an Eldercare Attorney.
I would contact the agency where he lives and where you plan on taking him, they can help you to plan the move. There are so many things that we don't know we don't know and it sucks when you are in the middle of a crisis to find out what you don't know effects everything you are doing and in my case, much of it was wrong. Like finding out the insurance, Medicare Advantage plan, didn't cross county lines, never mind state lines.
One way to get the rehabilitation facility to do their job is to make it clear that there is no money to pay after Medicare stops paying, even if it is not true, they don't want to get stiffed for the care and will do what is required to get him out the door. I also recommend that you follow your gut with his care and rehabilitation, I had my dad transferred to a different facility because the 1st one thought that him being able to transfer from bed to a wheelchair was as good as could be expected. Nope, not accepting that for one minute, he walked into the hospital and he needed therapy to regain his strength, that is what rehabilitation is about, not the lame job the first facility did.
If you don't already have Durable Power of Attorney, both general and medical, that is the 1st thing that you will want to get, believe me when I say that you will need the power that those documents provide to you. Make sure that you have a HIPAA release that states it is intended to be valid wherever, in any jurisdiction it is presented and that it has no expiration date, these are vital to ensure that you never lose the ability to advocate for his health care. www.nelf.org is a good resource to find a certified elder law attorney that can help you prepare these documents that will cross state lines.
You are at the beginning of an unknown journey, I recommend that you DO NOT make decisions based on emotions and that you research options before making decisions. You want to really know what you are getting into before you get in to it dealing with a parent, because he will still consider himself the dad, adult, alpha, etc and you want to protect yourself and your family from the wrath that could come because he is losing control of his own decisions. You have to prepare your heart for becoming the responsible, reasoning adult in the situation and that can be really hard depending on what kind of man your dad is and was.
Take care of yourself by getting enough rest and nutrition (I highly recommend magnesium supplements and zinc, along with lots of vitamin C to help your body deal with the stress). This is a difficult time for everyone involved but, you need to take care of you to help anyone else.
I pray that you find great resources available for your dad at both ends of this. Great big warm hug for you!
Step one, if Dad is at all cognitively capable at this time is, when you get him home, to get that POA done. You will need it. Get it in a Lawyer's office and get it airtight so you can act in all ways for him.
You will be having to have his automatically deposited Social Security check put in banking where he is. I hope he has it going to a big bank and still has the cognitive capability to open an account, and have the monies transferred (the bank can do this automatically.)
If Dad is not cognitively aware it is TOO LATE for POA. You will need guardianship and will need to go with doctors letters to the Social Security office to be maid representative payee. They do not accept a POA of any kind.
You will have to change his ID. Take him to your local DMV to establish residency.
First thing to know about being POA is that you need to keep meticulous records against the day that he needs medicaid to have in facility care.
Don't suppose that any of this will "work". You will have to adapt as you go and handle your anxiety with your doctor. Don't be ashamed to see your Doc and tell him/her what you are going through and get yourself medication to help on crisis days.
That's enough to think about now on day one. Don't try to handle it all all at once. This will take a year at LEAST to get running smoothly. I did it for my brother.
To be frank, it is almost lucky, but you don't have time now to think about what you missed it the past. That water has not only gone under the bridge but is entering the ocean now; now is the time for concentration on the "now".
Again, welcome. Come to us with questions one at a time and we will try to help all we can one at a time. Get professional help for professional questions.
I am sorry, but here it is. And now you will deal the best you can. Forget about guilt. You are mourning what has come to your Dad AND TO YOU. That G word is GRIEF.Learn that well. You are a human being with limitations with intentions to do good. There is no room in that definition for guilt. Leave guilt to the felons in our land, those who do evil.
Hugs. You CAN do this. I did it a few years ago for my bro, who is now gone. It was a learning experience like few others, and I didn't even ATTEMPT in home care. I KNEW going in that I could never do that.
Last sentence is true. NO federal agencies accept POAs.
But you don't need a doctor's note to apply to be Rep Payee. I called MY local office, not mom's. It was closer and quicker response than calling the 800 number, which will likely just send you off to a local office.
They set up an appointment (pre virus, so this may be done by phone now, or perhaps they do something else) for me.
I brought all kinds of paperwork to show I had been managing mom's finances. I did NOT bring my mother with me. They did NOT ask to see ANY of the papers I had. Nothing. They ask the questions they have, you provide your ID, etc and they submit the request.
No doctor info. No test showing dementia. Nothing. It was one of the easiest things I had to do in the whole business! They will mail notice to you and the person you are applying for (gives you update and gives the person opportunity to dispute it - mom was already in MC. the nurse held anything not looking like a card or personal letter and handed it to me.)
Once approved, the first payment comes as a check. You can set up a special account (only you can access it and only SS funds go in it.) Make sure the bank you choose knows how to set this up. THIS was the nightmare for me. Once the account is set, call the local office with the routing and account number and have it deposited electronically.
At year end they mail an accounting, to report how you used the funds. It isn't difficult and can even be done online, through your own SS account. Just keep track how his money is used. They lump a lot together, like housing and food. It's only maybe 1 page, double sided, and a lot is confirming you, that you still manage the funds, etc.