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Pronker, how are things going?
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pronker Oct 2021
Hello, thanks for attending to this thread. Spouse is declining; he's on IV for fluid, still drinks water, but isn't eating. When Youngest encouraged his dad last Thursday to eat some vanilla pudding, Spouse did finish one packet, at least. I window-visited today after taking a break on Saturday; much moaning and 'where are my pain meds' near the top of his lungs, followed by the two of us watching the end of the Eagles-Chiefs game, a bit of normalcy.

The facility discharges on the 7th because of 'non-improvement' so I'm scrambling to find a placement, with the most likely facility within walking distance. The admissions director at New Facility was very helpful and said 'get a referral from Original Facility for me to look over.' VA to contact me tomorrow as well as Original Facility social worker. I can recommend OF's skilled nursing, care and concern as they tried their best to get Spouse to eat to keep up strength. All family, religious leaders, doctors and nurses tried to encourage him to eat to no avail.

The dementia moaning was awful to hear, even through the closed window; he screamed when CNAs came to turn him over and do something to his catheter (I think it's a penis cap? couldn't see clearly). He's losing it, interspersed with periods of near-normal conversation. It's gratifying to confirm that this care is beyond my scope at home; I take no joy in the conclusion. It's grim all round.

Youngest visited, such a dear, and we enjoyed two days of camaraderie at home. He's doing his best to encourage his dad from far away. PACE says P for primary plan, which is placement near our home, A for alternate plan, which is placement farther away but still in the county, C for contingency plan, which is placement over 100 miles away, and E for emergency plan, which is release to home, with me gathering help as I can.

Medicare's quoted 100 days is deceptive and this forum helped me to realize that 21 days with 'unimprovement', leading to discharge was even on the table. Spouse tried in the beginning to work with PT and soon flailed in despair; he's complaining, well who wouldn't? He's simply irrational and says 'I know I would improve at home.' A complication is that the stairlift broke down so VA needs to come fix it; Plan B is to ask the firemen to come again and haul Spouse up the stairs if emergency plan ensues. He'd live upstairs only.

Admissions director says that Medicare time will reset if Spouse comes to New Facility; I need to find our more about that and other things like Medi-Cal which will fill in for expenses?
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@sp19690 The dietician described the process and didn't give any timeframe for going to that measure, such as amount of weight loss or another criteria. I neglected to ask her; Spouse said today he'd gotten up and "felt weak in upper body but not legs."

His dentist said she couldn't do a house call to the facility due to covid to deliver and fit his repaired denture, so that won't work as a help. It's a trial for him to eat and he doesn't stay "on task" as the dietician described, putting her off that he'll "eat it in a minute" or "just leave it there, I'll get to it." Then he goes back to the TV, or sudoku, or a nap. There's some encouragement that his R hand recovered somewhat from its 9/1 sprain, unless he's using his L hand to write.
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Pronker, one thing stood out in your post:

" Things escalated to "if our situations were reversed, I'd be overjoyed at having you back" ".

My ex (NPD) said stuff like that ALL the time.

In practice, he NEVER had my best interests at heart and immediately became disinterested or feigned illness himself if I had a baby or was ill.

Look, if this has been a mutually supportive marriage of many years, I can see trying to extend yourself to bringing him home with proper paid support (if you all can afford it, which it sounds like you can't--that's another issue entirely).

But if this has been a one way street, with you being endlessly supportive and getting little in return but derision for your efforts, I don't see the points in having these arguments, which are wearing you both out.

"The doctors say this is where you need to be; it's not up to me. If we can't talk about something else, I'll need to leave."

Believe me, I get how painful this is.

((((((hugs)))))))))
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pronker Sep 2021
I'm sorry to read of your ex's dismissal of very important things.

Yes, money has always been a problem..

Thanks for the thoughts and helpful reply - I'll use it, I'm certain, at some point. :) [[]]
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How is everything going, Pronker?
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pronker Sep 2021
Thanks for asking - yesterday was another call to "take me home, what will happen if the care center says I can go home today" which was naturally distressing. Things escalated to "if our situations were reversed, I'd be overjoyed at having you back" when I told him I'd call his PCP again about discharge. Visitation begins again tomorrow if no new covid cases in the facility; I'm preparing what to say to him by watching Teepa Snow vids. If he gets excited by my presence and tries to self-discharge, I'll simply say goodbye and walk away, so I'm steeling myself. It's a terrible time and I feel like a traitor to the marriage. Youngest Child also will visit, which may diffuse Spouse's lasering in on me. Spouse and I wound down our conversation by talking about the Jeopardy contestant's winning streak; it took about an hour to reach that point.

Physically, I dropped off some Chinese food of the blander kind to Dietician yesterday, who says he did not touch the other favorite foods I'd brought. Spouse said he took a walk in the hall with Aide and walker, felt weak in the upper body but not the legs. Dietician says the next step for the plan is feeding tube, which is not on his current POLST. She also said he ripped out his intravenous needle that was hydrating him. I've concluded he's throwing the world's biggest temper tantrum and will die to prove he's right about "let me come home so I can get stronger."

I'll do my best to enter his world as Teepa directs.
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Once again, this site has come through with invaluable advice. Many thanks to all who replied.
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Is ur DH in rehab? Medicare does not guarantee the full 100 days. The therapist has to show that the person is progressing and needs continued therapy. If they hit a plateau, Medicare will ask that the person be discharged to home. If found the person needs 24/7 care you can claim it would be an "unsafe" discharge because you cannot care for him nor do you have the finances to hire private care. This is when u have him placed in LTC. Just the days over 20 may cost you unless u have a very good secondary insurance. My Mom 5 yrs ago paid $150 a day. If she had gone the 100 days, the cost to her would have been 12k.
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pronker Sep 2021
Yes, he's in rehab. His nurse says he's working with the PT who come by to help him stand with his walker; Spouse says he's not working with them and all one does is stand by him to see he doesn't fall. Thanks for your story about your mom and first hand experience with the 100 days.
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I wonder how OP feels not being controlled by her husband since he is not at home right now. Besides his phone calls wanting to go home is it almost a relief not having him there? I imagine it would be. Just something to think about. Can you go back to having him at home now after tasting a little bit of emotional freedom?
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pronker Sep 2021
It's a relief from caring physically for him, that's for sure; the 48 hours he was home between his 9/3 discharge and 9/5 fall #2 was eye opening. Thanks for your input.
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I am with Barb here. This is the time you get him placed. I have no idea how VA works with their NHs. Does Medicaid get involved?

This is what I would do. Your house is an exempt asset under Medicaid. So is one car. Your monthly income, SS and Pension are not assets. So, you need to look at your assets. If substantial, you need to have them split. Your husbands split would be spent down and then u apply for Medicaid. You will be the Community Spouse and will get enough of your monthly income to pay bills. Maybe all of it if needed. An Eldercare Lawyer should be able to help you.

My GFs parents had 60k in the bank. It was split between them, his going for his care. She stayed in the home and had a car. She seemed to be doing OK.

When DH passes, Medicaid will put a lean on your house to cover the cost of his care. You will be able to continue to live in the house. But if you sell, that lean will need to be satisfied. If you pass, the house will need to be sold to satisfy the lean. A person could also pay the lean and keep the house.

Your profile says DH is 79. I will assume u have not updated his age and I know u have been here a while. So he is now in his 80s? Meaning you are too? I would consider placing him now. The cost and stress of caring for him at home will probably be too much for you. It would for me and I'm 72.
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pronker Sep 2021
Thanks so much for relating the first hand experiences. He is 79 and I am 68.
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Pronker,

It's already been established here on the forum that free rent is not payment for caregiving services. You're expecting about six hours a day of care (and if it isn't actual care every minute, that person has to be right there "on-call" if anything is needed) in exchange for a $450 rented room in your house.
I'm sure you're a perfectly lovely and reasonable person and are probably not aware of what a disgusting insult that offer is. Not only to your tenant as a person but to every caregiver on earth who does this kind of work as a living. This kind of offer proclaims that you think very lowly indeed of this person. How can it seem otherwise if all you offer for 30 hours a week of his labor is a room to sleep in with "full" house privileges (can eat, use the bathroom, and watch tv). This is no kind of an offer and if you haven't made it yet, I would strongly suggest that you don't. I've been in homecare for almost 25 years and I know exactly what 'helping to the toilet' means in these situations. So do you. That should be free? I don't think so.
So how about making a real offer to your tenant for caregiving services. The $450 to rent a room in your house automatically gets waived. That goes without saying. Then you, your husband, and the tenant/caregiver sit down and come to a dollar amount that everyone is comfortable with.
If you're not onboard with it, then call a care agency and pay for outside help.
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BarbBrooklyn Sep 2021
BC, I understand your outrage.

I will point out that Pronker's household is on Food Stamps and thus very low income.

She is desperately trying to cobble together services so that she can accede to her unreasonable husband's unreasonable demand that he return home. He is currently in VA rehab and threatens daily to discharge himself.

I think in her heart of hearts she knows that this is not a realistic plan.
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Pronker, at the risk of sounding harsh, or judgemental, or...something, I think enough is enough.

Your spouse has dementia and was unreasonable even before that diagnosis.

It sounds as if this marriage has been one long road of you being supportive, accommodating and flexible and of him being demanding, belittling and accusatory. To my eye, the man has a personality disorder and while these folks sometimes mellow with age, dementia can cause their self- centeredness to blossom to new heights.

He has a progressive illness that is going to get worse. He is already too large for you to manage at home and he has at least one instance of endangering himself by not comprehending the gravity of the situation (the car thing, remember?)

It seems to me that God or Fate has smiled upon you both and given you the opportunity to have him someplace safe for an extended period of time.

In your shoes, I would be using this time as respite, getting to a lawyer to talk about Medicaid/VA LTC eligibility and YOUR finances, finding a telehealth therapist and taking stock of where the best place for YOU to live for the next 40 years is. You mentioned divorce; I would consult a lawyer about that as well if that's on your mind.

I would not be struggling to figure out ways to cobble together a jury-rigged plan to bring him home with too little help.

Re: leaving your son the house...my parents brought me up with the idea that the "gift" they would leave us was that we wouldn't need to support them in their old age. That's better than a house or legacy of any kind.
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BurntCaregiver Sep 2021
BarbBrooklyn,

If Pronker's household is low-income and on food stamps, they are also on Medicaid.
Medicaid will pay for the husband's homecare aides. They may not pay for 24 hour a day live-in servants, but they will certainly send some homecare.
I've worked for many low-income people on both Medicaid and food stamps. They were receiving up to eight hours a day of home caregiving services. All paid for by Medicaid. Most of them didn't need more than an hour or two of aide care.
Pronker needs to talk to her food stamp caseworker or her husband's. They will set this up for them.
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Pronker, have you ever explored, with an eldercare attorney who understands both Medicaid and VA benefits, what your economic position would be if DH went into care?

Has a psychiatrist been consulted about DH's irrationality?
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pronker Sep 2021
No, I've not yet consulted an attorney; there are three in the family. None are eldercare attorneys and I'm sure they would recommend somebody.

No psychiatric eval thus far. Spouse is afraid of dying in rehab, has told me he's "terrified" of ending his days not doing what he wants to do, right down to the precise things we did together prior to 9/1. He may die as he says.

Yesterday he begged me to come pick him up, saying "I just need one friend and you're it" and "I've told them I'm leaving today." I said I cannot give him the care he has earned by serving his country. It was a terrible conversation. After 1.5 hours, we reached a weary accord that he would remain where he is and ended with us both (4 miles apart) watching the Cubs/Cardinals game to see if the Cardinals' winning streak continued.
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In agreement, keep charging rent.
You need to know the tenant is working and can afford the rent, not slacking off.

Keep everything separate, even to the extent of hiring someone else. imo.
You take in boarders to make ends meet, so No, do not forego the rent.

If you hired a caregiver (if possible) for only $20/hr., you would not need a room for that outside caregiver.
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pronker Sep 2021
Thanks for your advice. It's good thinking to keep rent going and keep the books straight about the streams of income, I guess.
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Another option is to end the marriage, sell the house and leave him to his VA resources. He's earned better care than I can give him. His half of the house proceeds would go towards his care someplace.

@sp19690 I would likely live in a senior community in town; this would take some planning and probably there would be a gap between /my/ placement there and the vacating of the home. A trailer park Youngest Brother lives in is nice, about 75 miles away.
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pronker, your tenant already works 30 hours a week at a paying job, do you think he would want to add 42 more hours to his week for no pay? Even if you waive the rent?
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pronker Sep 2021
Thanks for the input - I'm still piecing together what to say to Tenant, if I decide to put it forth. I said earlier he'd no caregiving experience, but I forgot that he'd driven Spouse last year around to various activities such as shopping, totaling about 80 hours' work, for which I paid him. The sitch has changed, though, re Spouse's mobility. Everything's up in the air. I might be making a tempest in a teapot; just today Spouse called and asked what the consequences would be if he just said he's leaving rehab against medical advice. To my knowledge, no more VA coverage; I'm awaiting clarification on the issue. Spouse is desperate and feels his life is at risk if he stays in rehab longer. He's irrational. I would be surprised but not shocked if he just said forget it and signed his discharge. I would not pick him up and would refuse care; he's not safe at home with one old lady, me, to provide care.
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Another answer to this problem is to sell out the house and attempt assisted living someplace where Spouse could be cared for.
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sp19690 Sep 2021
And where will you live?
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Another thought to ponder is Social Security Credits, Workers Comp, etc. Legal concerns when hiring someone.

Also, liability by you if he got injured. What if he hurts his back and becomes disabled. Could there be a lawsuit? I wanted to hire someone off Facebook to help caregive & lift, but realized it was just too risky for liability reasons. I can't afford a CNA, so just do it myself with a Hoyer Lift.

I used to be a 911 Dispatcher, so am very aware of liability issues and the necessity of following correct procedures. It's in your best interest to do so.

Sometimes the Area Agency of Aging can provide assistance by referring Caregivers for a lower price. Can they do an assessment? Would also hope the VA would help you.

Another option would be paying him a salary, and also giving him a discount on rent as a perk, but not as full payment.

Also, ask your husband's Doctor if they can provide Home Health Care visits upon his release. You should be able to get a Nurse, perhaps an Aide, Therapy etc and that generally is covered by insurance. But, that wouldn't help you at night time though.

Whatever you choose - I hope it works out for you and your husband.
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pronker Sep 2021
Thanks for the solid hints - VA offers 12 hours skilled nursing weekly, thus far; monetarily, with the 450 added to 900 from the VA pension would make the situation more amenable to Tenant. I'm still piecing together details; nothing is settled.
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Being a caregiver and sometimes helping out are two different things. You don't even know if he would want to take on this burden especially for no pay and not making him pay rent is not even remotely the same as paying him for his time. I have a feeling if this scenario comes to fruition it will not work out as you envision.
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pronker Sep 2021
Nope, it's tough to say if Tenant would even do it. And it's for sure a burden. Thx for the input.
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The title of your post states the tenant would be a "paid caregiver." However, the scenario you're implying - working 7 days a week for 6 hours a day, with no days off and no pay - other than room and board, is suggesting a type of indentured servitude scenario.

What would your tenant do if he himself becomes sick, or desperately needs a day or two off. Can he no longer go out at night to meet a friend for dinner? What if he wants to go on vacation?
What if he dates someone and wants to spend the night at their home? What if he needs surgery and time to recuperate?

There is also liability involved for your tenant. What if he doesn't properly take care of your husband, or injures him?

I know you want to save money, but this is not the way to do it. He's not a relative helping with caregiving. He's a tenant, and you're a landlord. If he skips a day or two - does he get evicted? etc
Too many loopholes in this situation, and it's not fair at all to the tenant.

Either: offer him a job and pay him a salary that follows the minimum wage rules/laws of your state, assuming you're in the US. Or hire another caregiver, or do the caregiving yourself if you don't wish to do placement.

I speak as someone who is a 24 hour a day caregiver with no pay for it, other than love.
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pronker Sep 2021
Thanks for replying - I appreciate the opening of a whole field for discussion. He'd have days off, and vacations, along with sick days; best wishes to you in your caregiving.
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You mentioned IF, so you're on the fence between bringing him home and placement, plus you have not mentioned this to the tenant?

It seems like you don't want to feel guilty about possible placement and you're trying to talk yourself out of going this direction.

Do what's best for him and you, and that may be sadly, placement.
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pronker Sep 2021
The situation requires much consideration of the future, as if anyone of us knows what will happen! The VA offers 12 hours weekly of skilled nursing, including his injections and so forth, so it's best to have a glimmer of what options there are. Things look bleak ATM. Thank you for your reply.
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I would not forego the rent.
Do a contract.
Pay him whatever is the going rate for caregivers in your area.
pay him by the hour for the actual hours he works.
So if he actually works 6 hours and the going rate is $20.00 per hour then you would pay him $120.00 for the day.
This way you have proof that your husband needed the care. The information might be necessary if you ever have to apply for Medicaid.
I would double check your homeowners policy and make sure it will cover any potential injury.
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pronker Sep 2021
Thanks for the practical advice, I really appreciate it.
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Er, I make that $2.50 an hour. (6 hours a day, 30 days a month = 180 hours. Rent is $450, I assume that's monthly)

Still feel it would be an attractive proposition for him? He'd have to like your spouse a heck of a lot.
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pronker Sep 2021
The amount would likely be augmented by Spouse's VA pension amount. The $450 is a starting point, so thanks for the thoughts.
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Um. $450 rent for 30 days is $15 per day rent if you want him available every day (not legal by the way). If you pay him nothing aside from rent, 6 hours per day equals $2.5 per hour to be available every day. He would be household employee and you’d have to pay employment taxes and workers comp. And would you expect him to drive too? Who pays car expenses. Then you’d have to file reports for employment so it’s not gifting for Medicaid. The caregiving duties including hygiene? And the small favors and free help now offered would mean he’s on duty with 2 jobs. Please reconsider long term placement so you can be a wife and manage care. Most live in positions have a salary plus housing. Don’t let desperation cloud your judgment.
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pronker Sep 2021
No, he'd not need to drive. Yes, the 2 jobs would be wearing on anyone and he likes his outside job quite a bit. I appreciate your input.
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