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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

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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 :)
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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
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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!
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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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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.
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Riverdale Aug 2022
I see both my messages were sent but not in the order they should have been.
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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.
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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!
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You may need a Care Coordinator.

In the meantime, start having meals together as much as possible.
You, your husband, and father. Dinner 3 times a week. Order out.
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MargaretMcKen Aug 2022
Father is 3 hours away, dinner is difficult.
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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.
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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.
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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.
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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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