Not sure where to turn, father will need long-term care soon. Any advice?

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Not sure where to turn, father will need long-term care soon. Any advice?

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Hi All, I'm 50, single, and have lived with my father for over 10 years. We live in an apartment and share rent and expenses. Its been helpful to both of us as he gets a little less than $2000 month from SS and we get along well and keep each other company. The problem is he's been declining over the last 5 years, exhibiting signs of Parkinson's. After doing some research, I think he actually may have Lewy Body dementia.

The neurologist doesn't really tell me anything as far as diagnosis but my father definitely shows signs of dementia. He can't tell time anymore, doesn't know the day of the week. He needs more and more assistance getting to the bathroom and has fallen a half dozen times. I have to work 6 days a week, long hours (retail) so he's alone during that time. Up until recently I've felt he's been OK , but now I realize he needs someone to look after him when I'm not home. The doctors he sees haven't really been helpful. Both of them sent out the hospital home health care nurses, but all I get from them is "we can't help you", Medicare doesn't pay for our services. Why would these doctors send these people out when they can't help? We can't afford to pay for private help. So I asked the nurse from home health services what I should do, call nursing homes? and she said yes but in unsympathetic tone she said "yes, but let me tell you they cost on average $13000 a month and want the first months deposit upfront". Well of course he or I don't have that.

My father is on Medicare with Medicaid but not full Medicaid. I'm not sure how that all works. All I know is my father can't be alone anymore, I can't be with him because I have to work, we have no other family support, we can't afford home health aids, the people from the local hospital have not been helpful and my father is likely to need a nursing home soon but trying to get him into one is too much for me to handle and he doesn't have that kind of money. Not sure where to post this, skilled nursing, Medicaid or dementia.

Care Decisions Multi-generational Living Skilled Nursing Facility

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Thank you all for your input. The hospital helped find placement for Dad and things are going in the right direction.

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That's good to hear! Fill us in on the details when you have time. Hugs to you both.

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First call the Medicaid office and learn all the information that is out there. They will explain the financial situation so you will know what to do. Second, get yourself a Power of Attorney - now - you will need it. Third, go to the local Office on Aging where you live. They are there to help people in your situations. There are solutions - you just need time to find them. And when the time comes, let the medical people tell your father what must be done. Then you can explain to him you are no longer able to do what you did as you must work, etc. Don't be afraid. Just stand firm.

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Call on the services of your town's elder case worker. They should also have on staff a social worker who could help,. Start there ......

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When I was made DPOA for two married friends of mine, the first thing I did was go with them to their bank where the forms had been notarized to introduce myself so they could see who I was and that I would be signing checks on their behalf. Everyone else accepted copies of the DPOA form except the credit card companies who wanted an original. So, when you are getting this form done, have several originals done at the same time. The credit card company did return it, but it made me feel uneasy until it came back. I had to show the original to the teacher retirement office, too, since the wife had been a teacher. She had it set up that when she passed, her husband would continue to get half of her teacher retirement amounts. They just had to know when that happened and that I was the one who would inform them. Best of luck on this path of care you are on. It is a blessing that you are doing this. I made sure I prayed for guidance to make the best decisions on my friends' behalf and I have gotten so much good guidance in doing this that I am amazed--and very thankful.

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Since he has medicaid and medicare, assuming he already meets the income and resource (bank accts, etc) requirements to be on the medicaid. Call your local medicaid office for elderly/disabled and talk to a worker about in home programs or facility care. If you don't know what the office is called in your state, call the Food Stamp office and ask them for the phone number. That's the best place to start. If you don't get help that way, go to a local nursing home and ask to talk to one of the social workers who can give you info (they do this every day).

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I am currently dealing with this also. Mom fell and broke her hip and was placed in a assisted facility for rehab. Unfortunately her insurance only covers 21 days of stay. She is not ready to come home, because I like you have to work for a living. I requested a meeting with her doctors, nurses, physical therapist and a Medicaid representative. We met yesterday. Unfortunately we did not make the cut off to cover her being accepted for the month of June and she had too much money in her savings account. So what I did was pay her stay for the rest of the month out of her savings which brought her down to the bear limit making her eligible for Medicaid. $1,999.99! She will be eligible for the month of July.

You need to request a meeting get your notes ready, ask questions, lots of questions and don't leave until you feel that you understand everything! Our meeting started at 2pm and ended at 5pm. I had a tablet filled with questions and asked everyone of them, some twice until I completely understood everything. Even though she currently has private insurance, they will switch her over to Medicaid part B. This will cover her therapy, her stay until she is completely rehabilitated and is able to come home, if that should happen. Mom also has dementia, and is a diabetic. So the long road is she probably will not be coming home and this is where she will stay.

Maka sure your father has less than $2000 in his checking, savings, pocket etc. If he has a life insurance policy and it has a cash value, contact the insurance company and have it made irrovacable, meaning no one can cash out on it until the time of death. They will take is as money and any pension money he has deposited to him monthly and will leave him a step is of $60 to purchase his necessities. Aka she he has his own checking account your name can not be on it. They will request copies of birth certificates, 5 months of bank statements. Make sure you have a POA, power of attorney so you can make all medical and financial arrangement for him.

Sorry I have gone on and on, but this is my 2nd go around with Medicaid and I finally got it done! Be persistent, no one is looking out for him but you!

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I am going through this now
Thank you.

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In Arizona, they adjust your monthly payment to the nursing to be a portion of your SS - they do not take it. In Wisconsin, they take your SS, So it depends on the state, but you need a doctor to recommend nursing home care. In AZ they interviewed my Mom to make sure she needed the care - when she told them it was 1972 they were convinced... Don't stress on the amount, it does work out - talk to your doctor and contact Medicaid! And don't forget hospice!

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I believe to get Medicaid to help pay for nursing home your fathers ss and any other income will be put in trust and medicare picks up the extra. Most if not all assisted living are private pay my moms cost 5800 per month she has advanced dementia. Talk to his doctor and any senior help lines you can find maybe a senior center is open while you work he may do better just being around people .Some assisted living have daycare for adults but it might be to pricey. Good luck!

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Medicare doesn't pay, Medicaid pays in some states for AL, but not all.

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I don't know what state you are in, but recently went through this with my mother. We applied for assistance for long term nursing home as my mother was not able to do assisted living. She had dementia and was a fall risk as well. Assisted living may work for you and Medicaid will cover it if he qualifies and it sounds like he would. There are also group homes that I've heard that are very good. We opted for a nursing home as Mom needed more than assisted living/group homes could provide. One important thing to know - there really aren't any good nursing homes. I visited Mom every day at differing times - this way they never knew when I was going to pop in. It kept them on their toes most of the time. If I found her in a wet diaper/clothes, I'd put them in a bag and drop that bag on the desk in front of the director and state "This will NOT happen again!" Of course it did, but not as often. I was told that the people who get visitors often get taken care of first. I also made friends with some of the residents who didn't need as much care (take them candy or some small gift - talc, toothbrush, etc) and also played bingo with them taking cupcakes/treats - they would keep me filled in on what was going on. Mom passed last December. Any way, you have to be on top of them!

I agree you need to do something - my Dad also had dementia - he thought he should mow the curb with his riding lawnmower and also put a screwdriver into an electrical outlet - the wall was all singed around the outlet plate. So they can be a danger to themselves without realizing it anymore. Dementia is a cruel disease - it's harder on the family as it progresses than it is on the individual who has it. If he lashes out please remember that it could be out of frustration that he can't express himself.

It would also help to get hospice care. Hospice is not only for those near death - but provide a great service to those in nursing homes. They will come in to bathe him a couple times a week and they will also send in a nurse a couple times a week to keep the home's nurses on their toes, as well as bring supplies and monitor medications. It's all covered so please don't hesitate to use that service! They will also come to your home!

My best to you - it's long road. I don't regret what I did for Mom over the 8 years she lived with us or the year in the home, but there were many, many long days. It was stressful but they do need someone and there are blessings in heaven for caregivers - I truly believe I've been blessed. Take care and be gentle with yourself!

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Hi mstrbill:

I am sorry you are dealing with this.

One reason doctors or nurses can not always offer solid advice is that every situation is different.

The person offering advice needs to know ALL the assets someone owns.....bank accounts, stock, homes, income, etc in order to answer the question at all. The answer is different depending on assets.

IMO, the best thing you can do is spend some money to talk to an elder care attorney. Most give a free consult. They can offer valuable advice.

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This 1st thing you need is DURABLE POWER OF ATTORNEY AND HEALTH CARE POA, these forms give you the authority to act on behalf of your dad. They allow others to speak freely with no concern about violating dad's right to privacy.

They do not put you on the hook to now pay his way, you are only an authorized representative and as such you can help him more effectively.

When you sign anything for him you sign his name, by POA your name. This keeps any scummy collection agents from saying you signed and now you owe. Just an added protection.

Check your states attorney general website and see if they have those forms available. Then you print them, my state AZ has fillable pdfs, you and dad go to the bank and get the signed and notarized.

You may not need them now, but as he ages he may not be able to sign them and then you can't get them. Someone that is not competent can not legally enter into a contract and that's what they are, you and dad are agreeing that you have the authority to act on his behalf.

Social Security administration will not accept any POA, if you need to deal with them they have their own forms and requirements, get those as well and get the ability to deal with them on his behalf.

None of this means you now have to do it, it means that now you can, if needed.

I can't stress enough how much heartache and headaches you will be spared by having these documents prepared for the time they are needed.

Never send anyone your original, make copies and show the original if needed but never leave it with anyone, keep them safely with you.

If your state doesn't have them, I would find one online that is free and then search the revised statutes for your state to ensure that they are legal or ask someone you know who has them to give you a copy and type it up and fill in the blanks, as it were.

It seems overwhelmingly, but trust me, not nearly as overwhelming as having dad in the hospital and no one will talk to you because you don't have them and he is unable to give his permission.

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The hospital is the best place to get placement. So it would be next hospitalization, getting the social worker at ONCE (as we all know how long they allow one to stay in hospital) get the evaluations. Ask for rehab and work with social workers there, and say you are not a caregiver, are basically a renter, and that your Dad is not safe in the home and cannot return to the home. That way placement will begin. As others have warned, 3 day admission crucial, not observation, and hopefully rehab. Stress not safe to be placed back in home. Get social worker on the durarable power of attorney at least for health care. Placement done by you alone without help of a social worker will be more of a go-nowhere nightmare. Done by social workers in hospital and rehab it usually goes better. Best out to you, and this is a helpless feeling. And it is unfortunately what medical care our end of life is all about in this country with each state having its own rules and hurdles so it is difficult for all of us to even help to guide others. Also go to any senior center in your area, ask for referral low cost for elder law attorney, take care of DPOA for health and consider financial. You need the health and can get it done in his doctor office, and looks as though you will need financial. This will of course mean ALL his money will go to his care when placed. Not sure where that leaves you other than with an apartment to share and find a roommate. Good luck to you. Keep us posted how it goes with you.

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The last time my Mom was in the hospital (July 2018) for three days, they classified her for observation - they didn't admit her, so Medicare would not cover any of the rehab, but her insurance did. You need to ask if they are being admitted!

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No matter what you NEED a DPOA. You say you do not need one but you do. You cannot do anything to help your father correctly and efficiently without one. I just had to put my father in rehab. I had to have that to make any decisions or help him. It is a protection for him and you to help you take care of him. Wishing you the best. Being a caregiver is a tough job with tough decisions that have to be made.

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Look, you know what to do.
Get dad to a good geriatric clinic and see a doctor for evaluation. They usually have a social worker assigned. They will help you in helping him. Medicare and medicaid will pay for his medical.
Your DHS (dept of human services) will advise you of how to get him into an assisted living or skilled nursing care facility. What ever his doctor has concluded he needs. Social worker can get you to the right people to help you with all.

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Take my word for it...Get a DPOA
and also a Medical POA...It costs very little and those documents will likely save endless frustration in the long term...Should he eventually not be competent, then it will be too late to do these documents....I said take my word for it because, (A) I've been there in spades and (B) it would take forever to explain the ins and outs.

Grace + peace,

Bob

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Get the DPOA! Even if all he has is SS! It's not difficult to do and will save you hours and hours and hours of battles later! I am working through the same battle you are with finding a place for my mother. I have a friend who works for a memory care unit and she has been a GOD send for me!!!!! She had me do this before doing anything else. My mother has no assets, no savings, only her retirement from teaching. (She has less income than your father).

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I agree with advice that others have given: contact your Area on Aging. We were able to get a volunteer to come 1 or 2 days a week to sit with my dad for a few hours when he had COPD, so my mom could run errands. Also, you might want to contact your local chapter of the Alzheimer's Association. They might be able to guide you and give some advice. In addition, if you belong to a house of worship, maybe some of the members might be willing to keep your dad company for an hour or so here or there. It's not a complete solution, but it's a start. It's a hard situation to be in. Best of luck.

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Call HCIL.
They assist with coordination, and they have vouchers for living arrangements:

713-974-4621

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I wonder if he would qualify for assisted living. In my area that’s around $3500 or less. They add on the services he needs ie toileting help, dressing but you are not paying for skilled nursing like in a nursing home

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Contact your Area Agency on Aging and ask what services are available and how to get your father qualified for them. Services differ by state; many states offer adult day care at a free or reduced cost while awaiting LTC placement, some offer limited in home care hours, meals on wheels, etc.

APS can be a source of help too for people who are doing their best to take care of an elder with limited resources. APS can get you to the top of the list for placement and in home care assistance.

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I'm bewildered! Dad's income is almost $2000 a month and you work full-time. Where has all your money gone? Did he not have a home, retirement, savings? Why haven't you and he prepared? That's a good income where I am. Dad can go into a nursing home on full Medicaid. Alternatively, you can't afford a daytime care center or sitter? Lots of single moms do it with less money than that!

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Unfortunately life happens and debts accrue, sometimes through ones own fault and sometimes by whim. My father's savings were wiped out 20 years ago when he had a stroke and had no insurance. he's been on that fixed income since. I've lived with him, he couldn't afford an apartment and living expense on his own. In CT, its very expensive, rents are over $1000/month. I have a lot of debt myself. I can't afford health insurance myself. His income is too high for full Medicaid, he only gets help with prescriptions and copays. I'm applying for full Medicaid (LTC) now.

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Call your local Agency in Aging. They can refer you to the Older American Act programs he probably would qualify for. They have programs for vulnerable adults; care managers, in home care, respite, etc.. Also, apply for Aid and Attendance from the VA. for their services.
I know Medicaid has different levels, but if he has medical expenses, they may be a spend down to the level you need to cover his care.

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Easiest way to do this is call 911 next time he falls/gets the least bit ill. Have them take him to the hospital. Make sure they admit him for 3 days - you can explain he hit is head when he fell needs a CT to rule out bleeding to brain, he has been complaining of pain when going to bathroom, might have a UTI so ask that they test for that, you notice he is having trouble eating - might need a swallow study done - you get the picture. Refuse to take him home. Tell them you have a work commitment out of town you must go to and walk out and do not come back to the hospital and refuse to answer the phone for 3 midnights after he has been admitted. Tell the social worker he cannot come home, he already has community Medicaid and they need to find a place for him to be safety discharged too - and it is NOT home with you. They will say take him home and we will keep helping you find a place - they will not - just keep saying you cannot do it, he is not safe (he isn't). With already having community Medicaid it should be rather easy for them to place him.

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Thank you, and thank you to all others here I haven't had a chance to reply to here. I now realize I should have started this process a while ago. I wish I came to this site 6 months to a year ago, much good advice that I haven't received from the professionals we've been seeing.

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MSTRBILL, If you have to call 911 & he goes to the hospital, be SURE he is listed as ADMITTED & not UNDER OBSERVATION. As I understand from reading previous posts, if he is ADMITTED for 3 days, he will be able to get placed. If there is anyone who has experience with this, please, correct me or add on to this. I know it's very important in placing someone & with payment.....?

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Excellent information. Excellent. Also try to get rehab, for balance of for whatever, and that is where you access help from Social Workers (get them right away on your case) for placement help, applications.

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Contact SS, and they will give you the information regarding Medicare/Medicaid. Go from there. You are looking at, most likely, a state run facility for placement for him. My mom is private pay care, but don't think that I haven't had issues with that. No matter what, keep up with what goes on with your father throughout all of this. It can be a long haul. Be prepared!

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I too would suggest your Aging and In Home Services agency. They have alot of resources and their job is to assist people that are in your position to navigate what is available.

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If your Dad is a veteran of the Armed Forces, don't forget to check into the VA - our experience has been amazing, although you must have infinite patience, but well worth it.

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I called our county social services office. They were most helpful!! They sent out application for Medicaid. I returned it 2 days later & the next week a nurse from the health dept & a social worker came to assess mom & determined she qualified for long term care. They gave me a list of facilities which I toured & those I approved, she was placed on waiting list. Waiting now for placement but in meantime, need to get a sitter to go anywhere. Leaving them alone when they have dementia/falls, is not wise. My advice is to make the phone calls, alot can be done through the mail. Don’t let anyone put you off, you need help with Dad. Also, if Dad worsens & has to go to the hospital, if they keep him 3 days, he can transfer to long term care. The social worker at the hospital will help you.
Its sad seeing them decline but sometimes we just can’t provide that professional care they need 24/7. I hope all works out soon & well for you & your Dad

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DPOA will give you the authority you need to handle social security payments, nursing home applications, Medicaid, the whole can of worms. Without it, once your father can't deal with these things for himself even with support, life tends to get complicated.

Here you go - try this link.

https://portal.ct.gov/DORS/Content-Pages/Programs/Aging-and-Disability-Resource-Centers-in-CT

I shouldn't let the grass grow. The nurses are mandated reporters, and if it's been recorded that your father ought not to be on his own and they know that he is left on his own, they will probably already have picked up the phone to APS.

DO NOT PANIC. That is just the system working as it should. Meanwhile, you are doing your best, and you are looking for help, and it isn't your fault that so far you've just been sent down blind alleys. Here's hoping there will be better answers very soon. Please keep in touch.

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Thank you CM

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Your dad is already on Medicaid, albeit not full, so that is a good news. He’s already in the system. You can get Medicaid to pay for home health aides. Consult with a social worker or eldercare manager, who can help you navigate through the care options.

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Not sure where to turn, father will need long-term care soon. Any advice?

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