Dad newly diagnosed, lives alone 3 hours away & I don't know where to start

RachelF

My 75yo father has been experiencing memory issues for years. We just received the alz diagnosis with a blood test confirmation. Living alone, no family other than me, driving, medications, food, safety, poa - all of it is a lot, but we are navigating. My biggest question and concern is where and how to navigate his housing and mobility needs moving forward. He currently has medicare with a supplemental plan.
1. What are the best modes of transportation you've experienced for loved ones? He couldn't navigate a ride share on his best of days 20 years ago let alone now! I would like him to be able to get up and go, so to speak, if he wants to run errands or just get out, but I don't know if that is an option anymore. I have him signed up for rsvp (volunteer ride service that has to be scheduled in advance).
2. What are the first steps I should take to plan for the future with regard to living and possible in home care? He barely gets by on his monthly income now, rents his apartment, and owns a car (not for long). This is by far the most daunting item on my list because I truly don't know where to start.

Thank you all for the resources and support you offer in this community. I have read through many of them, taken book suggestions, and it was the first place I returned to after this official diagnosis.

pamu

1. A volunteer ride service is great but at some point he will need someone to accompany him during outings. Does RSVP offer that? Is he able to manage a cell phone to call you if he gets lost?
2. I would contact his state's Dept of Aging/Dept of Health to see what resources are available. Unfortunately, Medicare doesn't cover housing or transportation. It sounds like he could possibly quality for Medicaid. Once my mom qualified for Medicaid she was able to get home aide visits and was issued a life alert. She's in MC now but it was a godsend for a while and allowed her to stay in her apartment (low income elderly housing). Our state (NH) also has a Medicaid voucher program called "Choices for Independence" that pays a large portion of AL (a selected few). It didn't work out for her because she was too advanced and needed more care - she lasted 18 days in AL before a hospitalization, then MC…so the disease can progress fast.

Wishing you the best of luck. I've learned so much from this community…it's been my safe place to get info and vent!

April23

Something to think about is that he is vulnerable to scams and being taken advantage of. I feel sure it happened to my dad before we knew how bad his memory issues really were. Can he still navigate in a store, know how to pay for things, etc.? Or will he be in front of the ATM confused and ask a random passerby for “help?” If someone drops him off in front of his house, can he get in the door, find the right key, etc. Or will he wander off down the street?

Is moving him closer to you an option? That would be preferable. Medicare does not pay for long term care once that becomes necessary. You should consult with an elder law attorney right away so that they can explain Medicaid laws in your state and help you with the documentation you’ll need to manage his affairs.

VKB

RachelF 

Please keep in mind everyone different. For some, independence is not an option quickly. For others it is slower. Yet, living so far away you will not be able to check and determine when he can no longer drive or no longer be safe alone in his house. These are just a couple of things to consider.

H1235

Welcome. I think the window of time between diagnosis and not being safe to live alone is very very short. I agree with apirl23. They are so vulnerable at this stage. Dementia is about so much more than just bad memory. Judgment, decision making, confusion, the inability to do complex tasks(even make a sandwich ), problems with money and finances, depression, lack of empathy. Many with dementia also have anosognosia. This is an inability to recognize their limitations or symptoms. This can be so dangerous if not supervised. I know this is obvious, but he is only going to get worse. So things he is capable of doing today may not be safe for him to do next week. In my opinion it’s best to stay one step ahead versus risking him falling into a dangerous situation. It is incredibly hard to monitor. I took mom to the dentist and every 6 months she got a new toothbrush. I just assumed she was swapping it out with her old one. When I moved her I several brand new toothbrushes. She had been using the same toothbrush for … I don’t even want to think about it. It never occurred to me that this is something I should have been checking. It’s tough to know what they are really capable of. When it comes down to it I would guess it’s less than most of us loved ones would recognize. I don’t know how you could possibly care for a person with dementia from 3 hours away! Even if money is no issue it’s still not going to work. I would forget about how he is going to get around town (use a grocery delivery service) and focus on finding a facility near you. Keep in mind some facilities can have a waiting list to get in. It might be best to get him on a list now. Your local commission on aging will be able to point you in the direction of services that might be available in his area, but it’s probably not going to be enough to keep him safely in him home. It sounds like he is going to need Medicaid. Each state has different requirements to qualify and different things they will cover. In the early stages assisted living is usually the best option ( very expensive). Sadly in many states Medicaid will only cover a nursing home. I have attached a link. It’s complicated and not an easy. You may want to see a lawyer. I hope something here helped.

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

RachelF

I appreciate all of the sharing and insight already. Thank you! It sounds like most switch from Medicare to Medicaid. Is that true?

I understand the sentiment of moving him closer to me. I also have many reservations about doing so. He has a written test at the DMV coming up. If he passes, then he has a behind the wheel test. Thankfully, we are in a state that the doctor can request a test and the DMV can enforce it. His brain MRI shows nothing more than typical aging. He was diagnosed with mild cog impairment. Ptau 217 (blood test) came back elevated indicating Alzheimer's disease. That lab was taken on our way out of the clinic. He doesn't have a follow-up for 6 months. I know this can progress quickly. This is just his current state.

All of that to say - he has established care where he lives with access to great healthcare for his autoimmune disease as well as geriatric care. His best friends live near him, and he is finally conversing with others in his current complex. It seems unnecessary at this time to pull him from the social scene (albeit small) he has, his friends who know his conditions and have him over to watch football and take him out to hear live music, and the medical system he knows. I feel like I would be fast tracking the effects of this disease because he would become a complete recluse if he had to move out of his community. I saw how hard it was for him to move to a new complex this past April, and I don't want to do that to him again until I have to. Luckily, I have been able to take off and get to Madison anytime he has an appointment, and I can continue to do that as well as checking in on him, going to visit, etc.

I might not like what I hear, but I truly am open to your insights and experiences. Thank you again!

April23

I always say that PWD are fine…until they aren’t. My dad drove fine until he didn’t, etc. Are you in frequent contact with his social circle? Will they alert you if they notice anything amiss? Regardless of the outcome of the driving test, I suggest you drive with him at your next visit and assess. PWD, especially early on, have the ability to sort of rise to the occasion when necessary (Dr visits, social situations, driving tests, etc.). They can mask their condition up to a certain point.

My dad started off with a MCI diagnosis. I understand your wanting him to remain independent as long as possible. Just understand that it WILL progress, it can happen quickly, and you need to be ready and on top of his progression at all times.

RachelF

Thank you! Yep, I don't believe he should be driving anymore, so the dr notice to the DMV was welcomed. I highly doubt he will pass even the written portions. His friends and I are in contact regularly, but he doesn't know that. The being ready is what I am aiming for. I have a handle on the now, but the potential of quick progression is where I am fumbling. It is sounding like looking into Medicaid might be my next step and then figuring out potential facilities once I know what is covered in Wisconsin.

psg712

My mom lived alone 400 miles from me. We had wonderful family friends who kept an eye on her and kept me informed. Even so, there were things we didn't know about until later that made our hair stand on end. She met a young woman (total stranger) in the grocery store and after a short conversation, gave the woman her name and where she lived. A few days later, the young lady showed up on mom's doorstep with a bag full of her clothing and possessions and asked if she could move in for a while. At least mom was still together enough to say that she needed to talk with her daughters first! That danger was averted, but around the same time she got a call from a "detective" helping a family who had been robbed ... she followed instructions and purchased $900 of Target gift cards. We found the receipt and the paper on which she had taken notes during the phone call. Never found the gift cards. She was still driving so no clue where she went with the cards and who she gave them to. The risk to her personal safety was worse than the financial cost of this adventure. And it was a wake up call about how badly her judgment was affected by dementia.

RachelF

https://alzconnected.org/discussion/comment/264182#Comment_264182

In hindsight, would you have moved her closer or found an assisted living or memory care facility for her sooner? In general, what would you have done differently looking back now knowing what you know?