Follow
Share

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.

Find Care & Housing
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.
Helpful Answer (11)
Reply to plum9195
Report
mstrbill Jun 13, 2019
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.
(9)
Report
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
Helpful Answer (9)
Reply to Lostinva
Report

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.
Helpful Answer (7)
Reply to AimlessMe
Report

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.
Helpful Answer (6)
Reply to Countrymouse
Report
mstrbill Jun 11, 2019
Thank you CM
(0)
Report
See 5 more replies
Thank you all for your input. The hospital helped find placement for Dad and things are going in the right direction.
Helpful Answer (6)
Reply to mstrbill
Report
Countrymouse Jun 17, 2019
That's good to hear! Fill us in on the details when you have time. Hugs to you both.
(1)
Report
See 2 more replies
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!
Helpful Answer (5)
Reply to Abels2chance
Report
Saralee1 Jun 16, 2019
I am going through this now
Thank you.
(0)
Report
Have you tried your Area Agency on Aging?

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.
Helpful Answer (4)
Reply to Countrymouse
Report
mstrbill Jun 11, 2019
Hi Countrymouse, thank you. No to all questions. He has no assets, just the SS check. I don't know if I really need DPOA.

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.
(1)
Report
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.
Helpful Answer (4)
Reply to sandy1955
Report

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.
Helpful Answer (4)
Reply to rlynn123
Report

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.
Helpful Answer (4)
Reply to AlvaDeer
Report
jczac44 Jun 13, 2019
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!
(0)
Report
See 1 more reply
See All Answers

Ask a Question

Subscribe to
Our Newsletter