Aging Parent Support Thread

[seriousthistime]

lurkyloo, I'm so sorry to be reading all this. 

You are a very devoted daughter.  I hope you know that.  I'm sure there are times when you just want to say 'F this' and not deal with it anymore, let the chips fall where they may, and just be done.  But you have tried and tried to do the right thing.  You are entitled to be tired of it from time to time.  I'm glad you have a brother who can help out with the day-to-day stuff, and aides who are at least somewhat attentive.  

I'm so impressed with you. 

And, about that guardianship, if you haven't already begun the process, start it now. 

 

[finnime]

 lurkyloo

[countrygirl2]

I am sitting here shaking. I wanted to do a lot today but am dealing with VA and medicaid again.

I literally had my hands start shaking so bad I had to go in the living room and sit down. Now my whole body is shaking, I'm going to go take a pill to try and calm down.  The anxiety this is causing me is beyond real. Now medicaid is wanting $2300 a month starting January, and this is all over that DAMN VA that wouldn't stop payments. I think it will finally stop. But looks like one more payment may come. Of course, now I'm so shook up, I can't find the page from VA saying that. I had to get up and walk away for a few minutes. 

I paid the balance of the loan the attorney said to do apparently they are noting that as income. Our attorney basically said if it continues she will refer me to a specialist attorney who deals with this. She told me she had clients like me that could get nothing done for 2 years now all of a sudden VA is coming back basically saying they want the money. I have it, think I might be a payment short.  But I'm putting it in the Miller Trust. At least VA isn't demanding back  money YET, said they will set up a payment schedule. Also said I didn't respond to their Aug 20 letter, yep, faxed 43 pages to the number in THEIR letter, I'm telling the state when the VA demands the 2020 money back I will give it to them from the trust. My attorney said that is what I need to do. So I don't know what will happen with them, hope they don't go back and disqualify her or anything. If so talking probably $100k for the last 14 months.

I'm trying to tell myself this will work out. But I'm not convinced at this point.  Because someone you have NO control will not stop money and even if we used it would have left us with owing a $70k or so balance. I'm just getting myself sick over this. I have NEVER had anything like this I could not resolve before.  Be very careful if you ever deal with them. We thought it was wonderful so we could afford assisted living for MIL, but now the fixing it may wipe me out. OK, need to buck up and go back at it.

Also wrote checks for fed and state estimates, paid a huge chunk which will hopefully account for the capital gains.  Sickening to see all our money goes and mr. crook pays $750, damn.

[countrygirl2]

You should not have let them release him, should have told them there was noone to care for him and needed to wait for placement. There is a social worker at the hospital who deals with this. They always want them out and home, but its easier to find a bed the other way. Mom went from the hospital directly to the nursing home.

I'm sorry but in some areas its very difficult to get them in memory care. We were already in assisted living and to get people in and do it all was weeks and at Christmas and with covid lots of people out.
I hope you get it done, a shame it has to get that bad before you can do anything.

My best to you and am hoping he is in an area with good quick service. Our senior intake and care situation in this country is not what it should be.

If he has no longterm care insurance will be private pay until he exhausts all but $2k of his assets.

[seriousthistime]

And hugs to you, too countrygirl2.  You are such a good daughter-in-law!  Especially after the lack of consideration she has shown you over the years.  

Is this not something you can turn over to your DH now that he is around?  

[countrygirl2]

Not really, he isn't into this particular kind of paperwork.  I'm better now, when my renter came and paid her rent she asked me what was wrong. I told her some, she said you are shaking all over, I told  her I would be ok. When I came in it dawned on me I had not eaten all that much this morning and I got a glass of apple cider, and some croutons. Not only was I upset but likely let my sugar level get to low, I don't realize it unless it gets really bad or someone says something. Not diabetic but have hypoglycemia sometimes. I just baked a sweet potato, got it up, this will help hold it.
Hubs is wanting me to send this sh** to the world, congressman, everybody. Ours is a repub he wouldn't do crap for you. And I told him it would just muddy the waters. He just gets mad, not at me.
This is all over only 1 thing, Stop the  VA benefit, that's it, the rest of the mess is because of that.
I am rereading everything and now not sure they are going to. And I've been dealing with it since day 1 so he really isn't in the loop. I will get it. I'm doing better now.

But as my attorney said if they start demanding money, then she will refer me to the specialist she knows. She said this is constant conversation now with their attorney friends. Her hubs is or was the president of the Indiana Bar Association, and they are from this really small town, I know they are very good attorneys and have contacts. If she can't get it straightened out. She said if I did let her know so she can help others, LOL!

They know I do all the guardian reports, do the LLC and all that stuff through them, she said I know you can sort it out. Gee thanks lady.

[jerseygirl]

Country girl. I’m so sorry you are dealing with this government mess
I had a difficult time with my sister also, a so-called geriatric attorney with lots of recommendations messed up her special needs trust. Took about 3 years and another attorney and about $25,000 of my money to straighten out

You are so conscientious and a kind person. Can you ask the attorney what happens if you just refuse to deal with this anymore?
Take care of yourself and just try to relax today
Prayers for you

[lurkyloo]

Dec 20, 2020 9:12:15 GMT -5 TheOtherMe said:

Will any facility take him as long as he smokes pot?  

My sister had a POA that said when dad was no longer able to make decisions she could sign him in to a care facility.  After he went blind and spent about 10 days in the hospital, the hospital would only release him to a nursing home.  She said it was the hardest thing she has ever done to sign the admission papers knowing he never wanted to be in a nursing home.

I don't think anyone wants to go to a nursing home.

Therein lies the paradox.  If he’d at least compromise on edibles then he’d have a much better shot at aging in place.  Instead he’s going to wind up without his favorite vices.  I’m betting they’d let him smoke tobacco outside, but not pot and likely no alcohol.

seriousthistime I cry entirely too easily these days to be reading things like that!  Thank you for the kind words.

As regards the suggestion that we should have shoved him directly into the first available memory care:  This is my father.  He is a human being, not just an inconvenience.  He deserves a thoughtful, measured approach to figuring out the best way to support his needs.  If that takes the entire very substantial amount of savings he has amassed in his lifetime, so be it.  I don’t need an inheritance.  If DH and I need to supplement because he runs out of money, that’s OK too. Frankly, I actually prefer the delay because the longer it takes, the more likely that the people caring for him will be vaccinated against CV.  
I appreciate that everyone brings their own perspective, but please be careful about projecting too much of your own experience onto others. I wish you the best dealing with your daughter and MIL.

[The Walk of the Penguin Mich]

Dec 20, 2020 12:31:02 GMT -5 countrygirl2 said:

I am sitting here shaking. I wanted to do a lot today but am dealing with VA and medicaid again.

I literally had my hands start shaking so bad I had to go in the living room and sit down. Now my whole body is shaking, I'm going to go take a pill to try and calm down.  The anxiety this is causing me is beyond real. Now medicaid is wanting $2300 a month starting January, and this is all over that DAMN VA that wouldn't stop payments. I think it will finally stop. But looks like one more payment may come. Of course, now I'm so shook up, I can't find the page from VA saying that. I had to get up and walk away for a few minutes. 

I paid the balance of the loan the attorney said to do apparently they are noting that as income. Our attorney basically said if it continues she will refer me to a specialist attorney who deals with this. She told me she had clients like me that could get nothing done for 2 years now all of a sudden VA is coming back basically saying they want the money. I have it, think I might be a payment short.  But I'm putting it in the Miller Trust. At least VA isn't demanding back  money YET, said they will set up a payment schedule. Also said I didn't respond to their Aug 20 letter, yep, faxed 43 pages to the number in THEIR letter, I'm telling the state when the VA demands the 2020 money back I will give it to them from the trust. My attorney said that is what I need to do. So I don't know what will happen with them, hope they don't go back and disqualify her or anything. If so talking probably $100k for the last 14 months.

I'm trying to tell myself this will work out. But I'm not convinced at this point.  Because someone you have NO control will not stop money and even if we used it would have left us with owing a $70k or so balance. I'm just getting myself sick over this. I have NEVER had anything like this I could not resolve before.  Be very careful if you ever deal with them. We thought it was wonderful so we could afford assisted living for MIL, but now the fixing it may wipe me out. OK, need to buck up and go back at it.

Also wrote checks for fed and state estimates, paid a huge chunk which will hopefully account for the capital gains.  Sickening to see all our money goes and mr. crook pays $750, damn.

At this point, you need to contact your local state senator’s office and tell them your problem.  

The job before last, there was an argument between BCBS and Medicare as to which was my primary insurance.  Everything got billed to one, then punted to another and neither would pay.  After going back and forth a dozen times, TD contacted Patty Murray, who is our senior state senator.  I had to sign a release, but they actually managed to get the problem fixed AND the money I paid for medical visits that should have been covered was returned to me (these were bills that I was being threatened with collections, so paid myself).  

[TheOtherMe]

Dec 20, 2020 16:19:04 GMT -5 lurkyloo said:

Dec 20, 2020 9:12:15 GMT -5 TheOtherMe said:

Will any facility take him as long as he smokes pot?  

My sister had a POA that said when dad was no longer able to make decisions she could sign him in to a care facility.  After he went blind and spent about 10 days in the hospital, the hospital would only release him to a nursing home.  She said it was the hardest thing she has ever done to sign the admission papers knowing he never wanted to be in a nursing home.

I don't think anyone wants to go to a nursing home.

Therein lies the paradox.  If he’d at least compromise on edibles then he’d have a much better shot at aging in place.  Instead he’s going to wind up without his favorite vices.  I’m betting they’d let him smoke tobacco outside, but not pot and likely no alcohol.

seriousthistime I cry entirely too easily these days to be reading things like that!  Thank you for the kind words.

As regards the suggestion that we should have shoved him directly into the first available memory care:  This is my father.  He is a human being, not just an inconvenience.  He deserves a thoughtful, measured approach to figuring out the best way to support his needs.  If that takes the entire very substantial amount of savings he has amassed in his lifetime, so be it.  I don’t need an inheritance.  If DH and I need to supplement because he runs out of money, that’s OK too. Frankly, I actually prefer the delay because the longer it takes, the more likely that the people caring for him will be vaccinated against CV.  
I appreciate that everyone brings their own perspective, but please be careful about projecting too much of your own experience onto others. I wish you the best dealing with your daughter and MIL.

Yes, your dad is a human being and does deserve to be treated as one as you figure out how to care for him in the best way possible.

Around here, none of the nursing homes, assisted living or independent living apartments allow smoking.  I know assisted living and independent living allow alcohol.

[Works4me]

What are the current cannabis laws in your state?

Because of the fact that a nursing home is the home of the resident, smoking can be accommodated - same thing with a shot or two.

[Bonny]

Dec 20, 2020 16:19:04 GMT -5 lurkyloo said:

Dec 20, 2020 9:12:15 GMT -5 TheOtherMe said:

Will any facility take him as long as he smokes pot?  

My sister had a POA that said when dad was no longer able to make decisions she could sign him in to a care facility.  After he went blind and spent about 10 days in the hospital, the hospital would only release him to a nursing home.  She said it was the hardest thing she has ever done to sign the admission papers knowing he never wanted to be in a nursing home.

I don't think anyone wants to go to a nursing home.

Therein lies the paradox.  If he’d at least compromise on edibles then he’d have a much better shot at aging in place.  Instead he’s going to wind up without his favorite vices.  I’m betting they’d let him smoke tobacco outside, but not pot and likely no alcohol.

seriousthistime I cry entirely too easily these days to be reading things like that!  Thank you for the kind words.

As regards the suggestion that we should have shoved him directly into the first available memory care:  This is my father.  He is a human being, not just an inconvenience.  He deserves a thoughtful, measured approach to figuring out the best way to support his needs.  If that takes the entire very substantial amount of savings he has amassed in his lifetime, so be it.  I don’t need an inheritance.  If DH and I need to supplement because he runs out of money, that’s OK too. Frankly, I actually prefer the delay because the longer it takes, the more likely that the people caring for him will be vaccinated against CV.  
I appreciate that everyone brings their own perspective, but please be careful about projecting too much of your own experience onto others. I wish you the best dealing with your daughter and MIL.

One valuable lesson I learned last year was what I thought was "nice" wasn't going to work for Dad. He didn't want nice. He liked a less nice facility which was associated with a skilled nursing facility because it had a gym. It didn't matter how much social groups or nice areas there were because my dad wasn't going to be social.

I felt like I was "saved by the bell" when he fell, again, broke more ribs and went back into the skilled nursing facility. Somehow they found a male Medicaid bed over on the custodial side. I had been told by social workers that the typical wait for a Medicaid bed was two years! The doctor wouldn't release him home because there wasn't enough support.

I would have liked a nicer outcome for my father but through a series of his choices it become impossible to help. 

We're going to go through something similar with my MIL.

I give you   you're a good daughter and this is a tough journey.

[NomoreDramaQ1015]

We are starting to deal with this with my grandmother.  DH is driving me insane by constantly talking about how "we' should be taking her in if we had room and how "we" (which we all know really means I'll be doing the burden of it) should be taking care of her because "that is what family does".

Where exactly am I supposed to find the time to care for an elderly relative?   It's great for him to say that he has a brother, sister and umpteen aunts, uncles, cousins and nephews to help out with care.   My family is tiny we don't have a whole lot of extra support.   

It also does not help she lives 45 minutes away and refuses to move.  She's not in a state/situation where my dad can declare guardianship over her and force her to move where we or someone else can take care of her.  She was warned when she moved out there originally that this was going to be a problem.   She told my dad to stick it where the sun don't shine when my grandfather died and they tried to have an intervention again.

Not to mention even if we were at that point where a home may be needed I do not fault my dad right now for not wanting her to go to one.  You don't want to be in a nursing home in Iowa right now.

My parents are looking into hiring a cleaning service for her.   We've gotten "lucky" in  fashion my maternal grandfather died of a sudden heart attack, maternal grandmother died of surgery complications in the hospital.  My paternal grandfather had cancer but that was hospice care which is totally different than elder care and even that was a giant PITA to get set up.

I am going to be honest I hope with all my might I drop dead suddenly or pass in my sleep.  I don't want my kids to have to deal with this crap.

[countrygirl2]

That's what my hubs says, just drop dead. He claims if he gets dementia he will not go in a nursing home and will take care of it himself.  I do believe he will if he is able to. But I think he will be like his mom and be in denial. I tried to keep her at home. Offered to get someone to stay with her, No way in hell she said, I don't need anybody here. So we had to do something, adult services would not help. 

I pray I'm not that way and may be. My dads sisters never lost their minds, no one in dads family had issues like that, so I'm hoping. No one in mom's had dementia either, so I have a good chance.  But then I may end up caring for him. I hope he got enough good genes from his dad to bypass it.
  
I got to a lady today at VA that could help me. AFTER I got a letter saying it was going to collections.

The lady at the Hot Line number the debt guy gave me understood, she said it was all in the letter. What was in the letter, I had sent to them and they said I did not. I am looking at them. BUT THE ONE THING I COULD NOT UNDERSTAND WAS A FORM MIL IS SUPPOSED TO SIGN. SHE SAID ITS FORM 21-4138. I HAD SENT IT.  But it turns out it was a witness statement that I need signed for a form someone made up, the first page I sent, the second I did not. She said if you don't give me the number I can't find it. IT HAS NO NUMBER!!!!  The VA rep said I have never seen that form before, its a made up form. She faxed me the witness form, no number. She said I was not reading the information in the letter that this statement in support of claim.  Well how in the hell am I supposed to know that!!!! I told her I faxed all this except that witness statement. That's what they kept saying wasn't signed. I took it to the VA rep and asked him if he knew and like I said he had never seen it before.  Maybe, just maybe this will solve it. And I will resend the medical expense sheet again.  I will look to see if it has a cover sheet too. By the time I learn all this I will be out of it. Phone calls for a year and no one said a thing. I am so mad and agitated I wanted to yell, but she was just trying to help.  Ok, so need to get myself under control and get it in AGAIN. I figured it was something like this. She said that's why you go to the veteran representative, well he didn't know, so she said I should have gone elsewhere. He told me he was supposed to have training and nothing, I guess because of covid.

And get this, they are going to send  her $2.20 a month next year. I said I WANT NOTHING, NOTHING.  Ok, betting it down a day at a time. At least the money from 2020 is set aside.

 

[TheOtherMe]

My mom had a cleaning lady long before they moved here.  As her health declined, she simply could not do it.  

Since mom and dad moved in to independent living when they moved here, she hired a cleaning lady and when mom died, dad kept her.

[Anne_in_VA]

I used to have a cleaning lady every other week until I retired.  I need to get one again to come in once a month or more as I just can’t do the heavy cleaning any more.  DD said she would help, but she does a slipshod job and I just need to do it over again.  

I found out that I’m getting a raise in my SS.  They’ve sent me three letters recently and each one says I’ll get more than the previous letter!  I think they forgot to account for my RMD income but am not sure why.  I’ll take it though!

[lurkyloo]

I think a regular cleaning lady is a good start-someone who’s out there regularly, can take some of the adulting load off, and can raise the alarm if they notice something’s not right or getting worse.

Bonny Thanks for the advice, and I am sorry about how difficult your MIL has been.  I don’t know how well I’d deal with eldercare and physical aggression...that sounds so hard. 

Brother has not yet talked to Dad about not being able to live alone     He thinks maybe Dad could go into AL instead of memory care, which I think is a better fit and possibly even realistic but Dad will never agree to either so he’s going to need a guardianship in place.  The best we could hope for Dad to consent to is a full time live in carer.  

I’ll worry about emailing those thoughts tomorrow. Thanks all for providing support, a space to vent, and some much-needed reality checks 

[TheOtherMe]

An assisted living facility evaluates their incoming patients to determine the level of care needed.  If the facility determines, the patient needs memory care, they will not be accepted in to assisted living.  

It was the day was to be evaluated that he had the stroke that cost him his vision.  The evaluation never happened but the director had already told me she did not think dad would qualify for assisted living.  It was my sister who needed convincing.

It's a hard journey with so many twists and turns along the way.

[Deleted]

Dec 21, 2020 18:30:35 GMT -5 Anne_in_VA said:

I found out that I’m getting a raise in my SS.  They’ve sent me three letters recently and each one says I’ll get more than the previous letter!  I think they forgot to account for my RMD income but am not sure why.  I’ll take it though!

Not sure how your RMD affects your SS payment unless you're talking about the net amount after they take out Medicare premiums (which might include iRMAA).  

Your gross SS monthly payment is not dependent on your income.  They will, however, tax some of it away the following year if you have any kind of decent income form other sources.

[lurkyloo]

Dec 22, 2020 9:25:17 GMT -5 TheOtherMe said:

An assisted living facility evaluates their incoming patients to determine the level of care needed.  If the facility determines, the patient needs memory care, they will not be accepted in to assisted living.  

It was the day was to be evaluated that he had the stroke that cost him his vision.  The evaluation never happened but the director had already told me she did not think dad would qualify for assisted living.  It was my sister who needed convincing.

It's a hard journey with so many twists and turns along the way.

Strokes are horrible    

I think Dad could reasonably qualify for AL.  He doesn’t need that much help on a regular basis, as long as bills, cleaning etc are taken care of; he’ll just periodically get a weird impulse he’s unable to suppress.  Unlikely that would happen during a basic evaluation so he might well pass.  Not even sure he’d fail a competency exam at the doctor depending on the day and what they’re specifically looking at.

The major thing on our side is that he was so incoherent (pneumonia and possibly substance abuse) after the driving incident that he would have gone into state guardianship if a family member hadn’t come to get him out of the hospital.  It’d be reasonable to tell him no one is going to make the multistate trip to spring him next time.

[TheOtherMe]

My dad passed the dementia evaluation with flying colors.  I could not believe it.  He was having a good day. 

If we had taken him the next day, he would not have been able to pass.  

[lurkyloo]

So, things have quieted down a bit.  My mother and SIL drove down for a week after Christmas, mother says he’s having trouble with continence but trying to hide it.  Brother has persuaded him to reluctantly move into assisted living (since the alternative is guardianship and moving anyway) and found a place that’s reasonably permissive wrt smoking.  Difficulty is that he was evaluated as just on the wrong side of the border for AL vs memory care, but the place agreed to allow him into AL if we pay for a caregiver too.  24/7 to start with the goal of reducing it to overnight and possibly canceling altogether depending on how he acclimates.

Tried to cancel initial agency, they called brother who agreed to allow them to stay on hiatus, he said they called him when he was distracted.  Tried again and succeeded in canceling.  If they’re smart they won’t contact me for a review again    

Dad is still not accepting limitations well.  Brother took away the key to the condo pool, said he woke up one night to Dad getting a pair of channel locks out to try to break in to the pool   New place allows swimming any hour as long as he tells the desk.

[TheOtherMe]

Sorry lurkyloo

My dad wouldn't admit to being incontinent either but it was rather obvious to me.  My sister said he didn't have a problem.

[lurkyloo]

I expect people who are willing to admit having trouble with incontinence are the minority.     Doesn’t make it easier, but it’s understandable.

[empress of self-improvement]

Yeah, DH could try to ignore it all he wanted but since I was the one left to clean up, he didn't. They have guards for men if he is only have problems with urinary incontinence. I know entirely too much about this topic.

[TheOtherMe]

Jan 20, 2021 10:15:33 GMT -5 lurkyloo said:

I expect people who are willing to admit having trouble with incontinence are the minority.     Doesn’t make it easier, but it’s understandable.

When the blue jeans are wet and I had to clean him up, he had a problem.

[giramomma]

So. I think I'm going to be hanging out here. Now, too.

This is terrible to say. But, a few years ago, mom sent me a cryptic text saying they had to make "some tough decisions." I assumed that I was being completely cut out of my parents' lives...and they were going to have someone else take care of their estate, etc.

Well, on a call today, mom told me about her and dad's final wishes "just so you know."  I figure, if why tell me if you've got someone else taking care of all that. So now. I wonder if I'm going to have to take care of all of their affairs.

My dad was supposed to be moved to rehab today, but ended up not being moved. So, he's staying in the hospital until next week. And then they will try again.

I don't know how accurate my mom is with her info. She's exhausted. She's stressed. She's scared.  She's lonely. So I don't know if the repeat of the same conversations that we had just a few days ago  is through that lens or if she's got some decline going on as well that she's hiding.

I cannot believe that the hospital is as inept as she's making it seem. Meaning, if dad has to do certain exercises at a specific time, if mom isn't there, he doesn't get those exercises at all that day. Or she said the hospital said they called her say he wasn't going to rehab, but she said she never got the call or message, so they lied. Or not changing wet bandages. I mean, it's not once in a while thing she's reporting. I'm pretty she thinks hospital folks are screwing up with dad like 5 times a day. It's supposed to be a good hospital. I wonder how much she's irritating the staff.

Her financial situation doesn't make sense, either. So, I don't know what's happening there.

I'm not sure how I navigate this.  I mean. It's super that she's all "think positive." but they've already stuck their heads in the sand enough about their situation. I'm also afraid to ask, because I don't know how bad it will be and I don't think I can handle that. I also don't want to set her off. Eventually my dad will pass, and that will trigger her really bad behaviors. Her fear of abandonment made her pretty ugly every time I hit a milestone: engagement, marriage, birth of the first two kids.

But, she's done a good job respecting my boundaries so far. Even something as simple as getting of the phone when I ask, or letting her know that she can't have access to me 24/7. 

So. I think I have to offer going down to their house and DH and I starting to work through a honey-do list. I don't know if she'll accept. I did make an offer once before, and she turned me down, and told me basically I wasn't welcome home.

The hospital can't figure out what's wrong with Dad. Their best guess is he's reacting to all the treatments. It doesn't make sense that Dad's medical team (he's got like 2 or 3 different oncologists) keep pushing for treatment if it's landing him in the hospital for a month. But, my mom doesn't take ownership in the fact that it's a choice to continue with the treatment that is landing him in the hospital.

I hate how DH is being a rock star with all of this, and it's not moving the needle much with me. It's still not enough for me to decide to let my guard down with him.

Fuck is my new favorite word. It's about all I can say,

[ners]

 giramomma

[taz157]

Jan 22, 2021 6:43:41 GMT -5 ners said:

 giramomma

Ditto. ((((Hugs))))

[buystoys]

Many hugs gira.