NYC - New to this and overwhelmed and confused

Flamingo22

Hi everyone,

Never wrote on a message board before, but hoping someone has been in a similar situation and can offer advice. I have a long and short story, but for this sake, I'll go with the latter. My dad (who just turned 71) is an alcoholic and was diagnosed with Wernicke-Korsakoff last year and has vastly declined in health since then. He lives with his domestic parter (she has been with him since I was ~11..and I'm 37 now) and I get a lot of information though her because I cut him out of my life. Recently, I've decided to try and get him f/t healthcare and into a mental health facility so he can receive proper care and to alleviate the stress on her. Since he hasn't listed anyone as a beneficiary or health proxy, Medicare (his health provider) won't help me, so I feel like I'm stuck. I just had a telehealth appt with his doctor who offered little to no help (suggested I find a social worker) but did provide us a Rx paper noting my dad needs f/t care. This is all so new to me and I don't know where to turn. I want to make myself the health proxy but don't know how as my dad can't make these decisions anymore and feel I'm at the mercy of all these different regulations. If anyone out there has been in a similar situation and can offer advice and next steps, I'm all ears.

Thank you!

Ryan

SusanB-dil

Hi Flamingo22 - welcome to 'here', but sorry for the reason.

That is correct that his doctor cannot tell you anything due to HIPAA regulations. However, you can tell the doctor your thoughts and observations, and he may be better able to address your dad based on that.  Probably the same with the medicare people, that they cannot tell you his status.

You are not alone - there are several folks here who have experience with Wernicke-Korsakoff, and you can always check the archives for various posts.  You can also call the alz number for assistance, and check the 'solutions' tab above.

jmlarue

Best advice would come from a Certified Elder Law Attorney (CELA) on getting guardianship for your father, as his next of kin (assuming that your father and his partner do not live in a "Common Law" marriage state. There, again, the lawyer is your best source of advise. Many CELAs will offer a short 1st consultation free or at low cost. They will tell you what they can do for you and your father and what it will cost. It's then up to you to proceed or not. Guardianship would allow you to make all decisions about his healthcare and finances. Your Dad's partner probably would be in some position to object, so I would make sure that you have her agreement to proceed.

MN Chickadee

There is a contributor with a lot of experience with alcohol related dementia on these boards named Harshedbuzz that will hopefully see this and comment. If not you may want to post again with the alcohol component in the title to get the attention of posters who have experience with that because it really is a specific set of knowledge and approach. 

In the mean time find an elder law attorney. They can help figure out how to best help your dad logistically. An attorney would look at competency to see if he can sign a POA now. If not you may need to get guardianship through the courts which they will help you do. The attorney can also look at his finances and advise the best way to pay for care and if/when to apply for long term care Medicaid. 

Do you think you could get him to sign a HIPAA release form for the doctor's office? Maybe use a therapeutic fib and say we are getting our papers in order together so we can see each other in the hospital if there is an emergency, or this way I can pick up your medications for you or something like that. If not you can still send information to the doc, they just can't send it back. Most doctors aren't super in tune with dementia caregiving or able to offer much advice or direction. It's just not in their wheel house. You will probably find the Alz Association and support groups like this one to offer far more insight.  

You don't mention if he is currently drinking or has severe behavioral issues. If you can elaborate on his current state we may be able to better offer advice on what to do, it depends on how severe things are. If he has any severe behaviors it will be hard to find a long term care facility that will take him until you get him stabilized. The more challenging behaviors often require a geriatric psychiatrist. That is the professional who can find the best way to detox him and/or prescribe medications to help with behaviors and the urge to drink. I would be looking for one asap. Some people see a geriatric psych via out patient setting, or if things are bad enough it could be he needs in-patient treatment, in which case you want a  geriatric psych unit  (sometimes called senior behavioral health unit.)  They are staffed by doctors and nurses who specialize in dementia and are best equipped to get a person stable. 

You can also call the Alzheimers Association hotline for advice and ask to speak to care consultants who are trained social workers who can help you work through issues and find dementia resources in your area. The service is free. 800-272-3900. Good luck and let us know how things go. 

harshedbuzz

Flamingo22 wrote:

Hi everyone,

Never wrote on a message board before, but hoping someone has been in a similar situation and can offer advice.

Hi Flamingo. MN Chickadee messaged me about your situation as it parallels mine. I am sorry for the situation in which you find yourself and yet very glad you found the site.

I have a long and short story, but for this sake, I'll go with the latter.

More information is always good.

My dad (who just turned 71) is an alcoholic and was diagnosed with Wernicke-Korsakoff last year and has vastly declined in health since then. He lives with his domestic parter (she has been with him since I was ~11..and I'm 37 now) and I get a lot of information though her because I cut him out of my life.

I have had family members with WKS. In my dad and cousin's case it was brought on by alcohol use disorder (alcoholism). My sister likely had it as a complication of AIDS in the last 6 months before she died in 1994.

As is often the case, my dad was a challenging individual; his geripsych agreed with me that he likely had significant mental health issues that went untreated most of his life. I remained in contact with him only because my mom was still married to him. I suspect she remained married because she didn't want to burden (or trust me) with the responsibility of being his next of kin. 

This is some background on the condition.

Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment | Alcohol and Alcoholism | Oxford Academic (oup.com)

Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment | Alcohol and Alcoholism | Oxford Academic (oup.com)

I agree with the others about seeing an elder law attorney. Your situation is complicated by the domestic partner. Does she want to step up and take responsibility for him? Are their financial lives intermingled? Are they considered to have a common-law marriage at this point? These answers will inform your next steps. 

Someone, either you or she, needs to either get a signed POA and Healthcare Directive in order to make decisions on his behalf or else obtain guardianship/conservatorship via the courts. If you do prevail in getting guardianship, the cost of the attorneys and testing will come from his assets rather than yours. 

Recently, I've decided to try and get him f/t healthcare and into a mental health facility so he can receive proper care and to alleviate the stress on her. Since he hasn't listed anyone as a beneficiary or health proxy, Medicare (his health provider) won't help me, so I feel like I'm stuck. I just had a telehealth appt with his doctor who offered little to no help (suggested I find a social worker) but did provide us a Rx paper noting my dad needs f/t care.

What exactly does f/t healthcare mean in this context? Are you looking for a permanent residential placement like a memory care facility or do you mean a behavioral health placement for alcohol rehabilitation or mental health therapy or do you just mean respite so his partner can catch her breath?

Medicare will pay for substance or mental health treatment in-patient under certain circumstances if out-patient care would not meet the needs of the individual. Medicare will not pay for a residential placement for any reason; Medicaid might if he meets certain ADL and financial criteria. Medicaid will pay for respite in certain situation like hospice. 

There's little doctors can offer in the way of care for this condition outside of an emergent Wernicke's episode. A geriatric psychiatrist might be able to prescribe meds to help him be less anxious or agitated. Dad's geripsych happened on a medication which helped curb his cravings for alcohol a bit. Typically, the doctor's note stating a need for custodial care is only needed when a PWD has a LTC policy that requires it or in the case of a POA that has that as a requirement to be activated. 

This is all so new to me and I don't know where to turn. I want to make myself the health proxy but don't know how as my dad can't make these decisions anymore and feel I'm at the mercy of all these different regulations. If anyone out there has been in a similar situation and can offer advice and next steps, I'm all ears.

An attorney can help you get your ducks in a row so that you can act to keep dad safe. 

Even so, you may find this a challenge given both non-cooperation of the part of your dad and the bias against people with this diagnosis in the world of dementia-care. 

Thank you!

Ryan