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SandraF Asked August 2022

In need of an advocate. Any ideas?

Hi,
I'm new here and feeling very overwhelmed. I am 59 years old and have a 74 year old disabled spouse with numerous health problems that I care for, and have recently realized that my elderly father (who will be 84 this year) is starting to exhibit early signs of dementia. He lives about 3 hours away from us... he is widowed and lives on his own, and has always been very independent but no longer drives.


 


I am an only "child," have no one to help me navigate my husband's illness, much less what is going on with my dad, now. I will be traveling to go to a doctor's appointment on Monday with my dad to talk about our concerns (he recognizes the signs himself and is worried) and a caregiver will stay with my husband, but I feel like I'm drowning and don't know what to ask, how to even think about care for dad, what to do about a POA (which does not currently exist), etc. I don't even know how to determine if he is eligible for any kind of caregiving or a long-term care facility with the type of insurance that he has (Medicare Advantage HMO) if/when it becomes necessary.


 


I'm juggling these things with a full-time, demanding job that at least I'm able to do remotely from home (made that arrangement with my employer so that I could care for my husband when Covid first started, and I continue to do so).


 


With no family that can help and no friends to speak of that I can rely on for something like this, I feel like I need some sort of advocate that can help me wade through some of this before I get totally in over my head, someone who can almost literally take me by the hand and explain things very clearly to me, step by step, on what I need to do to plan for what may be coming.


 


Does such a thing exist? Or is my best bet just to hire an elder care attorney? What does something like that cost?


 


Thanks so much for listening,
Sandra

Taarna Aug 2022
Contact the nearest larger city near you. Larger cities usually have an agency or department "of aging" that has staff that can help you navigate the resources near you. Local primary care doctors offices should also be able to point you to resources in your area.

Llamalover47 Aug 2022
Sandra: Your town of Jasper, Indiana should have a COA (Council on Aging) who will have on staff an elder care worker AND a social worker. These individuals will be your best resource.

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abcisco Aug 2022
Hi Sandra, I’m so sorry all this is happening. Your overwhelm is understandable. Checkout Daughterhood.org and their podcast. The book The 36-Hour Day is helpful. Your local chapter of the Alzheimer’s Association has resources for those living with any kind of dementia. Joining a support group that deals with solving caregiver issues with actionable help, and does not involve listening ad Infinitum to peoples family issues or major denial issues, saved me. The leader took charge and directed conversations to give support to caregiving issues in real time and caring for yourself while you weather this storm.

kenobuddy Aug 2022
Just take each day a day at a time and make sure you care for yourself first cause it will be overwellming for you. If you need help see if your dads medical can hire a care taker for him to give you some peace of mind.

geddyupgo Aug 2022
Some wonderful suggestions have been given and one of the best has been to exhale .... frequently because this can get overwhelming for the best and most knowledgeable of us!
My personal opinion.. get the basics accomplished with Dad since he is farthest away at this time. Have full work up with his PCP, a geriatric MD and a neurologist. Regardless of their findings, make sure his Will, DPoa and Medical proxy are all up to date... have a certified Eldercare Attorney do this for you. Discuss with him the future and where and how he would like to live .. at home with care givers, assisted living? Get in touch with the Office on Agency in the state in which he wishes to reside and also get in touch with a geriatric case manager as has been discussed. If Dad is a veteran please contact the VA.... they have many benefits and are very helpful. Again.... the geriatric case manager can guide you through all this and can give you information on the eligibility requirements for Medicaid should that be needed in the future.
Medicare Advantage and traditional Medicare are health insurance programs and will pay for rehabilitation, skilled nursing, hospice, DME but not for custodial care which includes Assisted Living.

Feel free to PM if you need a bit more info on the Medicare situation.

Hugs, blessings and good luck on this journey. You are not alone and you will get through. Now................. big exhalation!

Beekee Aug 2022
If your dad can maintain a coherent conversation and knowns he's in a lawyer's office, that's enough evidence for an elder care attorney to consider him competent to sign documents. The attorney is not going to ask for proof that he doesn't have dementia. The attorney is just going to be making sure your dad knows where he is, why he's there, and the purpose of the documents. It helps if your dad is recently showered, shaved, hair trimmed, and wearing clean clothes, a wristwatch, carrying a wallet. Choose an attorney carefully and plan several visits to their office. Will dad trust a man more than a female attorney? Or will dad enjoy the attention of a female attorney? Will dad be impressed with a fancy office in a large practice, or will he be intimidated? It's best if you contact the attorney first, explain what you want, and receive draft documents via email to make sure it's exactly what you want--all before you involve dad. Basically, since there is no one else, you want a POA document that gives you full control to make any and all decisions regarding any of his assets, housing, medical, etc. When you receive a draft of the document that is acceptable to you, then you can bring dad in to meet the attorney. Here's what worked for me: I paid the attorney online with my mother's credit card, without my mother knowing about it. Later, when my mother ask how much it cost, I told her don't worry, it's already been paid. She was confused enough that she accepted the explanation. However, she was still sharp enough to ask smart questions at the attorney's office! Hopefully your dad is in that sweet spot now, but don't count on him staying at the same level for long. Six months from now, he might not be oriented enough for an attorney to ethically allow him to sign documents.

NancyIS Aug 2022
Make sure your father's paperwork is in order first. He needs to set up powers of attorney for medical and financial matters, a living will with his advance medical directives, a will if he has assets (such as a house), etc. If he is too far gone with dementia to sign legal papers, it is too late to do this. As mentioned below, you may need an attorney to do these legal papers. Connect with a local social worker (in your father's area) who can help explain your father's options (and yours). If your father is low-income, the social worker may be able to recommend a pro bono attorney to help with the papers. Much will depend on his finances. Hopefully you're both in the same state. It may be time for your father to move to an assisted living/memory care residence. They handle all aspects of care, meals, housekeeping, etc. Unless you are superwoman, it's too much to be caregiver for both a husband and father living remotely (and having a full-time job). Speak with your father about this. It would be best if he could move to a residence near you so that you can visit often. For my mother, I looked for a continuing care facility that could handle independent living/memory care/skilled nursing all on the same campus. I did it online, but there are services such as this one that can help you. He'll probably need your help finding a senior residence, downsizing and moving. I was able to look for places on the internet (I drew a circle around my home - how far I'd be able to travel conveniently to visit). I went to look them first, and then brought my mother. She was OK with moving to a senior residence. Hopefully your father is too. The other option is in-home aides. It's difficult to manage aides remotely. The advantage of senior residences is that the professional staff is managed, and they take care of everything, you'll have his case manager as a point of contact. Also, there will be other people your father's age for him to meet, facilities for exercise, etc. and they arrange activities and classes. All the best to you and your family.

Ohwow323 Aug 2022
One step at a time! This is so important because you can become overwhelmed!
Go to doctor and get a diagnosis
Take a deep breath
Is Dad open to an Assisted Living Facility?
Go to elder lawyer - get a living trust - get POA and Medical POA - expensive but worth the money.
Prayers for you!

Scampie1 Aug 2022
First, get your dad assessed for dementia with a professional. Please speak to an elder care lawyer who can help you navigate through the process of helping your dad. Also, having a legal representative for your dad can protect his assets. Many people lose their assets unnecessarily because of not knowing what these nursing homes are capable of. I'm a CNA but refuse to work for a long-term care facility because of the unfair practices of practically draining a person's bank account and assets to pay for their care.

Speak with an elder care attorney first before making any moves.

Yvonneatthelake Aug 2022
I feel your pain. My husband just passed away after a long battle with Parkinson Disease. My mother died 1 1/2 yrs ago and I was her POA and helped her as well. I am in a good place now, but often cry when I think back what my family went through. It is incredibly difficult, and it wears you down.

You are only one person and you can only do so much. Do the best you can, but do not feel guilty.

You have to somehow carve some time out for yourself to exercise or meet a friend for coffee.

HonorExpert Aug 2022
Sandra,
These pressures and tasks can be so overwhelming and daunting, especially when everyone is juggling a multitude of responsibilities between families, work and the needs of our parents.

I highly recommend identifying a geriatric care manager to help. These professionals are certified as care managers, understand the nuances of navigating the healthcare system, are aware of appropriate recourses/eligibility requirements and can be an advocate with the medical providers because they are familiar with what questions to ask and how to ensure everyone is on the same page.
There is a a charge for this kind of help but most will offer an assessment that includes a plan and you can take it from there. Or, if you want that ongoing 1:1 support, they can offer this to you as well.
To find a care manager go to https://www.aginglifecare.org/ and put in your zip code. If there aren't any in your area, contact Honor Expert 888.574.5005 to help have more of a discussion and get help in finding a resource in your area. It's worth a discussion to see if this service may be beneficial for you and your family.

Surviving Aug 2022
Good morning. Definitely call your local county VA office they will be able to tell you if and what your Dad qualifies for as a reserve. And if he does qualify they will help with paperwork submission. They are a wonderful resource for Vets and Vet spouses. I submitted my paperwork for my Mom for aide & attendance through my local county agency and they were wonderful. Best of luck to you. Remember to take it one day at a time and breathe!

JamesRBarker Aug 2022
Sandra, you’ve gotten lots of great advice already.

I’ve been in your shoes and have two suggestions for you.

1. Find a Life Care Planning Law Firm in your area. These types of elder law firms have elder care lawyers, public benefits specialists, and elder care coordinators all working as one company to guide people through situations exactly like the one you are facing now. You’ll get all the legal work done, get a care plan, and get a guide/advocate for you during the journey. Go to LCPLFA.org to search for a firm near you.

2. If your dad and/or spouse is a veteran, he may qualify for VA pension aid and attendance benefits. I worked through the Center for Elder Veterans Rights (CFEVR.org), who helped me figure out what benefits might apply and how to best access them.

Help is out there.

JRB

ACaringDaughter Aug 2022
Sandra,

You can hire an advocate that will help you navigate all this.

Does your dad want to stay in his hometown? Does he want to live closer to you? I would sit down with your dad and ask him to tell you his end of life and funeral wishes.

Then hire only an unaffiliated (independent from any nursing home or hospital) advocate who works in the city/state in which your dad wishes to reside through the end of his life. You could start by contacting the Council on Aging (or a similar local agency). Talk to at least 3 client references before hiring. These advocates charge by the hour and the services provided will streamline your future roadmap.

An estate lawyer will help with the POA document, but that is only a small piece of this puzzle. If your dad has not created a will, ask him to independently meet with a lawyer and do so and create a will/POA/healthcare POA as an early step.

fxander Aug 2022
An eldercare lawyer is the best option. I’ve found that their fees vary, so shop around and just ask. Tell them your situation and get an idea. Most will at least guide you to alternate support even if you don’t hire them. Also there are county departments for the aging/elderly in every state, I imagine. Start calling around and asking. From there you should get helpful advice and direction. I’d say you certainly need a lawyer to set up a POA for you and your husband. Then I’d suggest trying to determine which of your situations is more urgent - husband or father - and deal with that first, rather than trying to figure out both. I’m going through something similar with my husband who had a stroke and has needed a lot of care. That said I don’t think an HMO will cover long-term care and it’s probably too expensive now to purchase for your father. Look into Medicaid for that. All things equal, if you can find an eldercare lawyer that you can reasonably afford, go that route and let someone who knows the systems guide you. Hopefully your employer will allow you a little time off to start getting things in place. Finally, and I’m sure you’ve heard this before, take care of yourself! It’s easier said than done, I know, but at some point you must do what’s right for you. Hopefully you have a good friend who will at least listen and support you however they can. It’s so important you don’t try to go through all this alone.

Jusroz Aug 2022
You are dealing with a lot. I acknowledge that fr reading what you said. If your dad has a Medicare Advantage plan. 1.Look on the back of his card and with on the phone call the members services number and let them know your dad's situation and let them know you need a cade manager to help you navigate your dad's care.
2. Also let them know you would like what's called a "Third Party Authorization form." That simply gives you authority to speak on and make calls as well as take calls in your dads behalf until you get a power of attorney in place
3. The Case Manager that gets assigned to you should be able to help you with trying to find resources for your dad such as "Care Giver" services. Typically what they can do is either reach out to your states " Area Agency On Aging" or walk you through how to see if he can qualify for Caregiver services. A financial assessment is done to see if the member qualifies. They have different limits on what finances can be in order to qualify.
4. Ask the doctor when you go to see him with your dad for a social work consult to see if they can help with these types of resources I have just mentioned.
5. Check into getting an elder lawyer to assist and help with getting power of attorney and manage his funds for other possible resources that may require a financial limit in order to qualify
6. Palliative care can be an option at some point to help really sick patients or those with complexed disease process live their best lives and offers their own set of resources and benefits toothed patients as well as to their caregivers such as respite care when they are overwhelmed and need a break.
Hope this helps.

WoodyAllenMovie Aug 2022
Hi Sandra. You sound like me. Contact if you want I’ve been through it and am still in it. There are resources.
Monica

cxmoody Aug 2022
I would suggest getting those medical and financial POAs drawn up before you have any cognitive testing done on your Dad, if you have any at all. And, get that POA asap.

Once there is a diagnosis of dementia, your Dad won’t be able to legally assign POA, at least not as I understand it.

We had Mom’s done, and soon after, she QUICKLY had a real step down in her cognitive abilities. She would have never passed the lawyer’s standard for capability to sign for herself.

Grandma1954 Aug 2022
SandraF, the best way to get information on what benefits a Veteran might qualify for would be to contact your local Veterans Assistance Commission. Each County has at least 1 office and the staff can get all the info that would be needed.
The service is FREE. There are groups and some lawyers that will tell you they can get the information and fill out papers but they will charge you for the service.
The great thing is that as soon as an application is submitted, even if it takes a while any benefits would be retroactive from the date of filing.
You can also call the VA and get the same information but in many cases they are so backed up that it will take longer.
Not sure about Reserves but it can't hurt to inquire.
anna739 Aug 2022
Your local DAV office is an excellant place to start. they are great for any veteran's needs. They helped us more than Va regional did.
ConnieCaretaker Aug 2022
An Elder Law Attorney can be your advocate and can assist in trying to qualify for Medical. Calling the Care Advisor on this site or "A Place for Mom," might bring insights into where and when both of your loved ones can be placed and especially your Dad in order to bring him closer to you so that you can support him without becoming his caretaker. You should be able to have Dad pay for the attorney once you get the banking in order.

Visiting Angels can be hired for your husband if you need a certain number of hours for your job. If things require medical care, then you'll need to figure out what level of care he needs and pursue that.

Most importantly, take care of you.

ConnieCaretaker Aug 2022
An Elder Law Attorney will be your advocate. Adult Protective Services could advise you on both situations and guide you towards Medical if possible.

You may need to place both of your loved ones, so for your convenience, it would be wise to locate facilities that are close to YOU. You can only be stretched in so many directions before disrupting your sanity.

SandraF Aug 2022
Thank you, this is all very good information. Like anything else, there is a lot to wade through and it can feel like a tidal wave at first. I have managed so many of my husband's health issues over the years that I feel fairly confident navigating his latest health crisis (he is now in stage 4 kidney failure, on top of so many other challenges), but I have not been in this position before with my father. He has always been the one I could call and say, "Hey, can I vent?" I never suspected he was struggling until just recently.

I did speak with him this morning, and have some concerns about this upcoming doctors appointment, as the doctor in question has some very mixed reviews and I'm not sure he is the best fit for my dad. That will add to the complexity if we need to start over and have dad seen by someone else, but I'm trying not to judge prematurely and can only hope this doctor will listen to my concerns and be as proactive as we need him to be.

Dad is feeling very down and depressed over all of this, and I can't blame him. I am, too, but I have to try to keep his spirits and my husband's spirits lifted right now. I'm relieved that I have scheduled a counseling session for myself on Friday.

Again, thank you---and please keep the good ideas coming. I intend to delve into all of the links, etc., this weekend when I will have some time to really focus on it.

Take care,
Sandra
overwhelmed21 Aug 2022
"I'm relieved that I have scheduled a counseling session for myself on Friday."
You have the most important person getting the help she needs! Good for you!
babsjvd Aug 2022
My husband and I did all our documents by downloading them on line… I forget which site , there was a minimal charge… durable POA, medical POA, will, living will, while your at it, get all accounts set up for POD (payable on death).. at Dr be sure you have been given access for dr/ staff to talk to you. For documents you have a notary and witnesses to make them legal. We went to the bank…
Sharovd Aug 2022
I live in Arizona and was able to get most, if not all, needed documents from the Arizona Attorney General's Office for free along with instructions. Getting them from your state's AG means that you have the correct documents for your state. Our AG offers senior resources.
Riverdale Aug 2022
I posted a long message and must not have hit sent. To truly help your father you need to convince him to give you POA which you would hire a lawyer for paid for with his money. This will allow you to know what his finances are which could pay for his future care.

Then if you can do that I feel it would be best for him to be in an Assisted Living facility closer to you so that you could visit without further stress at home. Until you know the shape of his finances it is hard to move forward as he declines.

I also am an only child and have done this with my mother who is now nearly 92. I am just giving you the starters for moving forward and hopefully relieving you of some of the stress you are currently experiencing.
Riverdale Aug 2022
I see both my messages were sent but not in the order they should have been.
Grandma1954 Aug 2022
There are Geriatric Care Managers that can be hired to take some of the load off.

Because it is me..Is your dad or even your spouse a Veteran? If so the VA might have several options and some help. And depending on when and where they served it might be a little help or a LOT. And in some cases the VA is no paying spouses for caring for the Veteran. And they pay to care for a Veteran that is not a spouse.

If dad is pretty cognizant an Attorney will allow him to sign legal documents. The attorney will talk to your dad alone and from that conversation they will determine if he is legally able to sign documents.
If it is for POA and other basic stuff the cost should not outrageous (it depends on the are you live in) You can call and ask what the basic cost would be and usually a consultation would be free. (limited to about 1 hour)

If dad is willing at this point he might do well in Assisted Living and then transition to Memory Care if that is necessary.
SandraF Aug 2022
Dad was in the reserves but not active military duty. I have wondered if that qualifies him and, if so, how we would go about pursuing options and resources via that avenue.
Riverdale Aug 2022
If your father lives in a home could you consider selling that to help pay for his care in Assisted Living that you might find closer to where you are?

I am also an only child and have kept my nearly 92 year old mother in 2 different AL ( now she is in Skilled Nursing ) facilities in 2 different states once we moved. It sounds as thought your father might be a good candidate for that. I also think it would be advisable to get a durable Power of Attorney for him. You would need to first discuss that with him,indicating you are doing this for his own good. If he is agreeable then you would find an attorney who specializes in elder care issues. You would pay for this with his money.

If these issues could move forward I think you should call AL facilities and find out if there are open beds on private pay. It would be best to visit them however that might not be that easy with Covid. You could read reviews and ask people you might know in the Healthcare world for positive suggestions on facilities.

I understand how overwhelmed you feel and I am sorry about your husband's health. You do seem to have that under control fortunately. The issues I mentioned above regarding your father are the steps I had to take once my mother's health rapidly declined. I have tried to start with what is most important and might bring you some relief with your father's situation.
SandraF Aug 2022
Good info, thanks. Unfortunately, selling his house to pay for assisted living is not really an option, as dad has a reverse mortgage that he took out many years ago, and there is very little likelihood that there will be any funds left over when the house is ultimately sold---just based on the disrepair he has allowed the house fall into (as I'm also just now learning).
Sunflowergarden Aug 2022
Another piece of advice - take out long term care insurance for yourself. If you don’t have this already. Your young enough to still take it out. You never know what can happen to you in your elderly years and from my experience, it’s best to plan.
SandraF Aug 2022
Yes, already got that taken care of earlier this year, thanks. That weighed very heavily on me, and although it took me jumping through a lot of hoops to get the additional coverage, I finally got it and am glad. Money well spent.
bundleofjoy Aug 2022
you'd like an advocate to tell you step by step what to do...

this is only my opinion:
--save as much money as you can. health issues come up, and you'll always need money.
--if you can afford it, delegate work! get rid of some of the weight on your shoulders. hire trustworthy home aides, etc.
--for your two LOs, get durable POA (much more convenient than springing POA), will, etc., documents in order. your father is only starting to get dementia: this means he's probably still mentally ok and capable to sign documents. get all this done, asap. avoid guardianship: costly and will take up A LOT of your time, yearly paperwork. in order to avoid guardianship, get POA. a lawyer or notary can do POA, will...
--again, only my opinion: no point to get your father diagnosed for possible dementia. get a durable POA: this means it's valid right away upon signing; no need for a doctor's certificate. i say: no need for diagnosis, because it doesn't help. even if a doctor confirms your father has dementia, there's nothing medically you can do against it. dementia, cognitive decline, will happen. sometimes a diagnosis can create trouble -- it can for example, potentially prevent your father from signing documents in the future, because it serves as potential evidence that he might be mentally incompetent. if he has dementia, memory loss...the best you can do, is try to keep his mind mentally active. ANDDDDDD please force him to get hearing aids (if he has bad hearing). the two often go together. bad hearing = dementia increases/accelerates. better hearing = better brain/better cognitive ability. get his ears cleaned anyway by a doctor -- sometimes simply ear cleaning (microaspiration is the safest method; safer than water irrigation, which can damage the eardrum), can REALLY increase cognitive ability. i wouldn't be surprised if your father hasn't cleaned his ears in a while.
--more on dementia: there are different types of dementia, with different rates of progression/prognoses. but in the end, you see, no matter what type of dementia, the rate of acceleration will be very different from person to person. so again, i say, no point getting the diagnosis. just try to keep your father's mind active. (that doesn't mean just TV). if possible, reading, writing, talking. talking is very important: interacting with people. even nice phone calls, with intellectual conversations, are very useful. :)
--i'm sure you already know this: get blood tests done. thyroid, vitamin deficiency, urinary tract infections (UTIs): all examples that can change personality, and contribute to cognitive problems. (in other words, sometimes it's not dementia; sometimes it's an easy, treatable problem).
--as others have mentioned, under the search topics, you'll find lots of information on many topics. or simply post a specific question; people will help/answer.
--besides practical advice, what we most often need is emotional support. this forum is helpful. you can lean on someone. you can feel understood. hug!! sometimes you'll read 1 sentence, that changes your whole outlook for the better!! gaining wisdom from others who went through it.

final point:
--i learned most from friends (people older than me) who had been through it. i asked them for advice. they had lots of experience, many tips to tell me; and i in turn, gave tips to others.
--sometimes i even asked random people: like a hairdresser older than me, in my small town, how she helped her parents. she had a lot of wisdom to share.

1 more final point:
treat yourself daily. every day, all day.
we on this forum are all amazing people...loving, caring...
treat yourself. you deserve it.

bundle of joy :)
Sunflowergarden Aug 2022
Agree with this. Sometimes a diagnosis can cause trouble in the future. It’s such a fine line and dance to navigating this
MargaretMcKen Aug 2022
This isn’t a job for an attorney, more for a social worker, perhaps attached to your state Office on Ageing (I forget the right terms, but look up Aging in the phone directory). A Care Co-ordinator may be helpful in due course, but it would be cheaper to get your head around the basics with a Government agency social worker. The Attorney comes later if you need wills, Power of Attorney etc.

Welcome to the site, which also has a lot of information. If you click on Care Topics at the top of the screen, you will find an alphabet. Click on a for Assisted Living, S for senior living, N for Nursing Homes, M for Medicaid and Medicare, H for HIPPA (very important) plus anything else that seems relevant. You will find expert articles, and many many old posts and discussions. Browsing at home is a cheap and comfortable way to get yourself a bit more ‘educated’.

There is a lot to learn, and there aren’t too many short cuts. Good luck on the road!

gladimhere Aug 2022
Geriatric care managers are very skilled in that sort of navigation. I

https://www.aginglifecare.org

The better bet is the Area Agency on Aging.

http://www.iaaaa.org

INfo on Medicare and medicaid
https://www.in.gov/ship/help-paying-for-your-medicare-costs/area-agencies-on-aging/

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