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
In the meantime, start having meals together as much as possible.
You, your husband, and father. Dinner 3 times a week. Order out.
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/
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!
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 :)
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.
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.
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.
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
You have the most important person getting the help she needs! Good for you!
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.
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.
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.
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.
Monica
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.
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.
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
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.
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.
Speak with an elder care attorney first before making any moves.
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!
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!