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My original, unhinged post can be found here --> https://www.agingcare.com/questions/fil-living-with-us-is-exhausting-488994.htm
So, FIL is still with us. Things have calmed down for the most part. We sold his house and his antiques are being auctioned on Friday, so we no longer have that to contend with. He is still on chemo pills for the cancer that moved to his lungs. He has an oncologist appt. tomorrow and they will schedule a scan to see if it has changed for the better or worse. We are thinking that it may be worsening.
Back when this all started, he had a neurologist consult for his confusion that started this all. She had diagnosed him with cognitive impairment with parkinsonism. He never had a follow-up appt. because he refused to go. For the past 2 weeks, he has been increasingly confused and actually hallucinating at times. He was not taking his daily pills properly, so we took those from him and give them to him when needed. He has woken us up in the middle of the night (sometimes 3 times) for various issues. "I can't sleep...turn on the TV.". He said his car was missing, but it was in the driveway (he does NOT drive and we have the keys). "I need to call the police because of all the people coming in and out." We live in a single house, so nobody is coming in and out. "There are people downstairs making noise.". It is an unfinished basement where my wood shop is.
As I said, he has a follow-up with his oncologist tomorrow. His daughters are going to request that they include his head in the scan to see if perhaps the cancer have travelled to his brain. If not, he has an appt. with his primary care doctor next week and they are going to discuss his increasing confusion and occasional hallucinations and see about getting another neurologist consult as soon as possible.
In the meantime, I have installed door chimes on all of the doors in case he decides to wander. He hasn't, but has alluded to the fact like when thought his car was missing saying "I have to go find it". I did purchase deadbolts that use a key from the inside, but did not install them. I would only do that if he tries to wander until we can get him a neurologist appt. If I have to do that, the key would be hidden on a nail on the side of the door frame for easy access if we would have to evacuate the house quickly for any reason...like a fire. I also put a wifi camera up to keep an eye on him at night in case he falls.
If he continues to deteriorate and we are unable to care for him (or if he becomes violent, which I don't think will happen in his frail state), he will have to go into memory care or hospice...depending on if the dementia or cancer is what is doing this to him. The daughters want this to be a last resort because he has stated before that he will not go into a nursing home. Also, if he HAS to, that essentially will leave them with no inheritance other than the life insurance. My wife is listed as an owner on his bank accounts, so I don't know if they would be able to take the proceeds from the sale of his house and the upcoming proceeds from the auction of his antiques.
So, that's my update.

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Thanks for the update.

"I don't know if they would be able to take the proceeds from the sale of his house and the upcoming proceeds from the auction of his antiques."

You can use the proceeds from the sale of the house and antiques and pay for his care and things he needs, but it can't be gifted in anyway. Not entitled to inheritance till the person passes. Medicaid goes back 5 yrs. Any gifting in that time, will cause penalties.
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I agree with RR that this post now makes no sense. Can't divide out what the OP's responses are, nor to whom.

I don't see here, however, where anyone suggested that this be moved to discussions?
Who asked for that here?

I often will report things that ARE discussion for removal TO discussion. When it is general info about elder care and there's no question, it is just providing material. But I only do that with a new question without answers. I think I will continue to do that unless the admins come forward with some clear guidance. Then it is in the hands of the admins, who, I think, will see your suggestions, RR.

I think there are of late a ton of problems on AC. We are getting spam-alot. And ads. And products. And surveys. And looney one sentence questions that are posted under "taxes" and say nothing. I am wondering if no one looks at questions before they are posted. Because some are exceptionally squirrely.

I think we all have our own personal gripes about the site. Good luck to our admins; hope they might post us a chat about all this.
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Seriously ADMINISTRATION! if you change posts from questions AFTER someone has responded to a specific answer to discussions you make a cluster f**k out of it.

Could you NOT change it because another poster wants it?

Could you ONLY allow the original poster to request change?

Could you LEAVE IT ALONE if the chains are already started and messing with it only creates a CF?

I can't wrap my head around why you guys do this because a regular poster asks, THEY ARE NOT THEIR POSTS, THEY SHOULD HAVE NO SAY IN WHERE THEY ARE POSTED, THE ORIGINAL OP IS SMART ENOUGH TO PUT IT WHERE THEY WANT IT.
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Reply to Isthisrealyreal
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I'm so very sorry you're all going through this. I agree with Geaton - why put him and all the rest of you through more appointments, scans, etc. etc? He isn't going to get better. He IS going to get worse. Cancer in his lungs is bad enough, and he's probably not going to overcome that! What good does knowing it's in his brain do for anyone?

Please get a hospice evaluation and placement for him ASAP. They'll immediately begin to make him more comfortable and they'll be there to explain all these things to you as well. As for memory care or assisted living, the evaluation (by them) can take weeks. You'll need to collect much medical information, history, doctor recommendation, financial information, and so on. You will fill out reams of paperwork. Start now.

By the time it gets to placement, poor FIL probably won't know where he is. What he wanted and what he said he wanted and what everybody else thinks they want is irrelevant now. This past blah blah blah is IN THE PAST. Leave it there.

My dad insisted that he wanted to die at home, and I went through several versions of hell managing it and the relatives who also insisted on that and my own exhaustion and burnout. Yet at the end, dad thought he was in a hospital anyway.

My at-the-moment advice: don't make this more complicated by coming up with solutions that won't solve anything.
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Reply to Fawnby
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Hospice is mostly done at home. And given the cancer dx you might not even need the dementia one.

Your typical hospice meds are seroquel, Ativan and morphine. The first two were designed for hallucinations and agitation, specifically. There is also a calming function that comes with opiates.
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Isthisrealyreal Mar 19, 2025
Hospice would not allow chemo pills.

My guess is that daddy'o is full code and he will never choose comfort over trying to live forever.
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There are special hinges people on here have mentioned where any confused person won’t be able to open the door at all.

https://www.alzstore.com/confounding-door-lock-p/0247.htm?srsltid=AfmBOopQA_ZbYxwYcF47xYb45aTmescHmpqcvdeiKnuVZZ_dziAEnaNe
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Reply to Bulldog54321
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That still sounds pretty miserable for everyone. It's important to remember, his money is HIS and should be spent as necessary for his needs while he is alive, so "leaving them with no inheritance other than the life insurance" should not be a consideration. "If they would be able to take the proceeds from the sale of his house and auctions," again, that is HIS money, not your wife's and her sister's, so if he needs memory care, that's what it should be used for, not withheld because your wife and her sister (and you?) feel entitled to inherit it.
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dmg1969 Mar 19, 2025
If he gets to the point of requiring memory care, he will certainly get it. I feel entitled to nothing because he is not my parent. His daughters just hope they might see something in the end given the family dynamic. Even given the fact that he was absent for much of their lives, stopped paying child support when they were little and a multitude of other negatives regarding him, they are still caring for him when he needs it. Not many people would be willing to do that.
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Respectfully, why are you waiting to transition him to MC or LTC or hospice? He *will* get worse. IMO going to all those medical appointments will do nothing but drain his bank account and waste your time and tire you out. Even is the reason for his confusion is cancer that has moved to his brain... then what? More chemo? All for what? No quality of life.

If it's not brain cancer, not a UTI, not anything but cognitive decline, again: then what? There's no cure for that. Quality of life, not quantity, should be the decision-makig filter for him now. We've had 2 seniors pass from pancreatic cancer, so I can tell you it is an awful journey to drag out unnecessarily.

I wish you wisdom and peace in your hearts as you seek quality of life for him.
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Reply to Geaton777
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dmg1969 Mar 19, 2025
His daughters are waiting until after his next scan in a few weeks to see where he stands in terms of the cancer. Odds are that it will be the cancer that takes him before any dementia. If it shows a worsening of the cancer, I would imagine that the doctor would recommend stopping the chemo and him entering hospice. IF that is the case, that is what will happen.

If the cancer is status quo, then the chemo if he wants it (he always says he wants to live) will likely continue and we need to address the cognitive issues. The problem with putting him in AL or MC right now is that he has said that he WILL NOT go. And despite his cognitive decline, he is OK most of the time and only has episodes of confusion or hallucinations. Their decision is that he will stay with us until (if) he gets to a point where we cannot properly care for him or if he would become aggressive.

Respectfully, not fully understanding the family dynamics leaves these questions. His daughters (and us SILs) are doing what we can to make sure he is taken care of, has what he needs and is with family (which is what he wants). If and when hospice or AL/MC becomes necessary, that will happen.
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Thank you for this update. It sounds all really so very sad. I am so sorry you all are going through this. It sounds as though you are doing all the right things. Has there been any consideration of asking for Hospice now, or are you thinking that will add more complications than help?
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dmg1969 Mar 19, 2025
I'm sure we will know more about that after his next scan. If the cancer has progressed or spread further, I'm sure the oncologist will recommend stopped the chemo pills and him going on hospice. I think him going on hospice before being told by the doctor would just lead to a rapid decline for him. He does want to live and says so. That's why he deals with the side effects of the chemo pills. If the cancer is unchanged, then we further address the cognitive issues. My wife has already given guidelines as to when she will no longer be willing to care for her father. If and when we get to that point, then he will either go into AL/MC or stay full time at her sister's who has previous nursing home experience if she still wants to do that.
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