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.
Has your father given formal HIPAA authorisation for you to liaise with his health care professionals?
Do you have Durable Power of Attorney for him?
2 and 3 are important admin-related steps to take, so see to those as soon as possible.
I am gnashing my teeth at the "counsel of despair" attitude you're getting from the nurses. I *know* health services around the world feel under pressure and unappreciated, but for heaven's sake. Was that really the best she could do?
Whereabouts do you live? Perhaps we can have a dig around and see if there are any Parkinson's or dementia related support organisations operating near you, too. But first things first - get hold of the reins, and get your father's needs assessed.
Its been really bewildering with those nurses and doctors. The neurologist referred the home nurses, they came out, told us they can't do anything because Medicare only pays for an immediate or treatable condition, not something like Parkinsons. You would think the Dr should have known this. Then, I had him see a new Primary Dr affiliated with the hospital who did the same thing. The head nurse called me and told me he doesn't qualify so I asked her somewhat frantically "what should I do contact nursing homes?". That was in my head because the neurologist at the last visit had written at the bottom of the the summary to contact nursing homes. Well, I or he don't have that kind of money unfortunately. I sensed the nurse knew this and knew I was in a bind but offered no advice or help. O and one more thing, the doctors office called me and mentioned something about the nurses wanted to refer to Elderly protective services which really got my goat. I take care of him the best I can and he's happy with me. I really don't understand and I'm very upset if someone thinks there's mistreatment going on. All I wan't and need is some help.
We're in CT.
Have Dad apply for Medicaid asap.
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.
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
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.
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.
They assist with coordination, and they have vouchers for living arrangements:
713-974-4621
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
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.
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.
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.
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!
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!
Thank you.