Desperate for information on how to navigate

Prjen816

My father is 73 years old. Not yet diagnosed, still waiting for the Oregon Medical System to reach out to schedule appointment. My father is showing signs of rapid cognitive decline. As of January 2025, his ability to manage day to day tasks, remember obligations, family gatherings, addresses, conversations and the list goes on. His behavior with finances has drastically taken a toll and he is consistently asking for help but then doesn't remember when the help is actively available. IHe can actively dress himself, feed, bathe, etc. but he cannot reconcile a though or understand choices/consequences, daily confusion and ongoing fraud on all bank accounts, emails, etc. I have reached out to the county who has assigned a social worker but he doesn't remember what he needs to do to get the financial support and will not allow us to facilitate due to my astrainged mother recently moving in after 30 years and controlling our access to him. I have tried to reach out to anyone that will listen but there are no answers besides power of attorney.I know that part, i just don't know how to effectively protect him in the meantime. It is devasting to watch him suffer and cry for help and depression. I feel helpless and alone as I have no referene point for this and I just want to help him.

elhijo

Hello Prjen816,

Sorry for the bit of a long reply but as you wanted direction on how to navigate here it goes:

The most realistic thing you can do right now is try to make peace with your estranged mom so you can drop in and keep an eye on your dad for the immediate future. You don't want to get into a huge fight with her and not be allowed in the house. Fake being nice it if you have to. Now if you are a remote caretaker in another state or city, then the most realistic thing you can do at this point is pray for him and pray hard. I know you said about of power of attorney but those aren't enough. What I recommend you do (if you haven't already) is consult an Elder Care attorney and get legal guardianship over your dad. Power of attorneys don't have the same weight as legal guardianships do. Basically you become your dad's "parent" and all legal decisions and healthcare decisions become yours. This means if dad gets very sick and he goes to the hospital and estranged mom wants to pull the plug and let nature take it's course, you can override her and order the hospital to treat him until he gets better - and the hospital will have to do this because you are the legal guardian. Call Medicare if you have to and explain you are the legal guardian and make all healthcare and financial decisions for that, the hospital has a copy of the court order and such and such is happening etc. You only do this if it is truly a life or death situation. You don't want to pull the Medicare hammer unless you absolutely must. Keep in mind hospitals are generally understaffed now so be somewhat patient with these patient when hard situations happen. Now if mom is still his wife, not sure how that works. Even more reason to speak to an Elder Care attorney. Know that these things are expensive as I got mine years ago, cost me about $7K in all (pre-Covid), but I would do it again. You can call the line on here and they may have a list of Elder Care attorneys in your area they can refer you to. Sometimes these attorneys are compassionate and are willing to work with clients financially but they're not obligated to. Like all things, shop around and trust your gut. Listen to your gut when it comes to Alzheimer's. Trust it.

And even with legal guardianship, if estranged mom is in the picture, you will still have to make peace with her and be civil to her and try to be understanding of her own needs. We don't always know the relationship our parents had with each other or why they do what they do. If you see that she is harming your dad in some way and you have the law/legal matters on your side, then that is another story but unless that happens, try to understand that she is going to have to care of a man she hasn't seen in years. She may or may not stick around but if she does she will be an unpaid caretaker 24/7.

And on this point, I advise to you is to get with the state system you mentioned and make sure you get a home health aide to come help mom take care of dad. Mom, estranged or not, is going to need help taking care of dad. Try to get help for her 6 days a week, a couple of hours a day. As dads needs change he may need more hours of care. Work with the state, don't fight these people. Expect there to be delays and some misunderstandings so make sure to follow-up, a lot, but always always be nice about it, even if you have to call them multiple times a day just to get things going. And do get whatever paperwork the state requires - on time and completed. That way you show consideration for their time and it will just keep things flowing positively. You want to work with these people. Now dad may be resistant to strange people in the house but mom will need the help. You may have to go through several aides until you find one that works. Keep in mind that the women that do these jobs are usually immigrant women or minority women and get paid very little and often times the agencies that employ them don't even give them healthcare or paid time off. So be sensitive to not overwork them. They have may 2 or 3 clients besides your dad to take care of in order to make ends meet. So if they want to leave a little early or arrive a little late now and then, mom and yourself will need to be understanding of their situation and show some flexibility provided they're going a descent job of taking care of dad. Now if the care is terrible, the aide is consistently late, give them and the agency the boot and call the social worker the state will assign you and ask for another home health agency.

With luck, a little love and forgiveness, you and mom may be able to keep dad out of a nursing home. If he becomes violent though, if he is hard to control as he's a man and men are stronger on average than women, then you may need placement into a facility. I abhor those places as staffing tends to be terrible, workers are underpaid, they have constant turnover, etc. But like all things, some places are worse than others. But if a strong man cannot be controlled at home, sometimes it is the only option. With legal guardianship you will be able to decide where dad goes and yank him out of one if it's a terrible place and put him into a better one because you will legally enabled to do so. In ALF's, nursing homes, "community care" settings, etc., the patients who seem to suffer the most are the ones whose relatives have abandoned them basically. So make sure you or mom visit him something like 3x week, if not daily. You don't have to go in the room as some places don't want you to do that initially as it confuses them to see the loved ones and they want to go home but you maybe can peek through the window/door or put on a wig and sunglasses on and ask to see him and pretend to be a nurse. If they say no I'd be really leery about that cause you have to see the care he's getting with your own eyes. What you want to do is cover the basics. Are dad's toes/ fingers/ buttocks/ intimate areas clean. Does he have bruises, if so what does the facility have to say about it. Can be breathe, is he lethargic, and why. Make sure to check the buttocks area as if he's being left for hours on end without movement he may get a huge sacral wound that gets infected and he die from this. Yes it can and does happen if patients aren't turned often. It's also an indication of how often they are changing him if he gets to the point he's incontient. Sorry if I went TMI on this but it's things you might need to check for in time. Even if you keep him at home with help, the above is something you should check daily/have someone check daily. It's the little things that do the elderly in. So basic hygene and clean environment (including air quality and appropriate humidity) is step one.

Don't forget - trust your gut. And now might be a good time to cultivate the spiritual for your own self. You'll need it. Alzheimer's is a long road and prayer works.

Best of luck to you and dad on the road ahead.

el hijo,

Miami, FL