pronker Asked September 2021

How to tell Spouse the Care Center (convalescent hospital) stay may be permanent?

Spouse was admitted to his 100 day VA and Medicare rehab last Saturday. He's under quarantine that possibly will lift on the 15th of September, when I will visit because we're both vaxxed. He's sounding about 3 percent better spirited than when he was in County General. He's traumatized and reassures me that "I won't be any more trouble than before I fainted/fell the two times on 9/1 and 9/5." He is 79 and I am 68; he weighs about 230, is diabetic requiring shots and currently pain shots for his four broken ribs, and about 15 daily pills. All this is VA 100 percent.

He's eating a tad more than last week, drinking some more fluids, and believes he can be released "in a few days." On 9/10, I observed his hand tremors which are worse; Parkinson's isn't on his official list of problems and the tremors likely are exacerbated from simple weakness. I've not yet spoken with rehab personnel about his general condition and PT prognosis. I dread fielding his calls to "go home because that's where I will get stronger." There's no official stamp saying "you're in here for good" yet I'm fearing that. I'm dealing, however.

What are kind, encouraging things to say to him?

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notgoodenough and BarbBrooklyn are right on the money.

You may know the stay will be permanent, but he does not need to know. There is no need to upset him.

When I faced that situation, I just told her that she needed to keep getting stronger. I will take her home as soon as she is ready. (She remained in AL/MC for fourteen months.)

Do NOT take him home because he says he wont be a burden, because he thinks he can do his ADLs by himself, or because he hates the staff/food/other residents, etc. By bringing him home before he is ready/able, you are putting both of you in jeopardy. The next round of falls/outbursts etc will be worse. Maintain your strength, keep him there as long as possible. He will get better faster with professionals than with you.

Two things to remember:
1. You are his greatest asset, don't waste your strength.
2. Don't kill yourself keeping him alive.

Helpful Answer (11)

Thanks for the input and the 'getting stronger' scenario. He does think he is able and I'd not want that idea taken from him; I'm prepared to play devil's advocate. The two things are most helpful.

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Pronker, it's early days for you both.

I would tell him that you *both* need to take this one day at a time. Tell him to put his focus and energy towards his rehab; the rest of it will work itself out over time.

It's not a lie; neither of you know where he'll be at day 100. A lot can happen between now and then; there's no sense in getting ahead of yourselves now.

Give him - and yourself - a chance to adjust to this new normal. With him in rehab, it gives you a chance to reboot as well...you don't have to make any decisions right now at this moment. Just be as supportive as you can without making any unkeepable promises.

Helpful Answer (9)

Thanks for the reply and advice. He's terrified about staying for the rest of his life and says "he's not willing to do that" and asked for me to pick him up to come home. It was a terrible conversation over a shared mobile phone, so I'm getting him a jitterbug phone that needs to have buttons and be simple.

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My mom had a counselor prescribed by the doctor. It was helpful to her because she could get her words out and also the counselor helped her find her words. I talked to to the counselor as to the assisted living situation and long term and what to say to mom. The counselor recommended to just take it day by day and no mention of long term. That has been very successful. After 3 months mom was comfortable with the living situation, her apartment and the food and kind staff. Your situation is different in that you are the spouse and your husband probably wants you to be with him. A friend of ours moved in with her husband and benefited with the care that her husband got without her having to do it herself. When he got a lot worse-aggressive and not knowing her, he was moved to memory care without her.

Helpful Answer (8)

Thanks for your reply and the encouragement of 'day to day.' Yes, I do want him to receive care and I realize I'm not up to the job.

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The phrase 'not yet' might be helpful....as it is early days in his rehab and he may make more progress than expected....there should be a social worker assigned to his care team, and talking with that person might be very helpful. If it comes to the decision that you are not capable of managing his care -incontinence is hard to keep up with at home, and his physical size does add to the labor - then his care team can help strategize how to tell him, along with family. Making the doctor the bad guy works well. Also, get your own health attended to right now, while you do not need to stay with him all the time. Your doctor may find that you should not continue in this 24 hour caregiver role. That can be another factor in discharge planning.

Helpful Answer (7)

Yes, the VA social worker is helpful; 24/7 caregiving for the 22 years since his first cancer diagnosis has been wearing. Thanks for replying.

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Pronker, I haven't dealt with this issue with a spouse, only with my mom (but I watched HER deal with my dad).

We were both big at throwing the doc under the bus--any doc. "The doctor says you need to be here".

I asked mom once what she would do if dad's PCP said he could go home. Mom said "I'd say 'Oh, not THAT doctor--I meant doc X, the specialist'".

This must be both heartbreaking and nerve-wracking. Ate the kids being supportive?

Helpful Answer (6)

Ha, yes the Dr. gets the blame and is likely used to it; the kids and niece are so wonderfully supportive I'm touched. Spouse threatens to release himself and it took one hour to talk him down. There's one shared mobile phone in the facility so I'm getting him a jitterbug phone. If he somehow signs papers and whatnot, I'm not picking him up so I'm hoping that the words "unsafe release" covers all the legal bases, plus my refusal to care for him. I'm just too old to care for him safely. He's having a panic attack realizing that this may be his scenario for the rest of his life, poor lamb.

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Medicare does not guarantee that 100 days, does the VA?
With Medicare, when a person hits a plateau or is not progressing, they are discharged. All that 100 days means is that Medicare will pay up to then. Out of that 100, 80 days is 50%. The first 20 is 100%. Does the VA cover the 50% that Medicare does not pay?
Is the VA ur husbands secondary insurance? Because if not, it could cost you to have ur husband in rehab. Its been at least 5 yrs, but my Mom paid out of pocket $150 a day. 80 days x $150 a day = $12,000.

Tell your husband he gets discharged when the doctors say so.

Helpful Answer (6)

Thanks for your reply. The VA social worker claims it's combining the two, VA and Medicare. There's nothing to pay for any sort of care; the household is on food stamps now.

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You have 100 days to work though this. He needs to be there because although he thinks he would get better more quickly at home you cannot lift him if he falls again, you cannot administer the shots and you cannot provide the PT.

Therefore you can use these as reasons why he has to stay for now. Regarding being in somewhere for good I think you are jumping the gun and worrying about something that may not happen. If you get to day 80 and he is still in need of more support than you have give then discuss with the rehab, get them onside and get them to see he needs to being somewhere supported - they can do this whilst talking to him about his PT or at other times. If you are all talking from the same page then it will be easier to have the conversation.

However don't lose hope that the 100 days will see a big change physically and mentally and he may be able to come home with little assistance. Best wishes to you as you work through this difficult period.

Helpful Answer (5)

Thanks for replying and yes, I'm worried! Good idea to involve the staff.

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Cover, I really disagree very strongly.

I think he needs a chance to rehab from this recent injury before any decisions are made or communicated to the patient.

Helpful Answer (5)

Thank you for your input; Spouse's sensitive to nuance and picks up readily any intonation, much less wording of comments. The broken ribs bother him to the point of needing pain shots, but the R hand seems to have improved where he can hold the cell, which he's learned to answer calls on. That's something positive, which both he and I need greatly.

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"Lewy body dementia is an umbrella term for two related clinical diagnoses: “dementia with Lewy bodies” and “Parkinson's disease dementia.” These disorders share the same underlying changes in the brain and very similar symptoms, but the symptoms appear in a different order depending on where the Lewy bodies first form."

Just read one of your replies. Has ur husband been diagnosed with what type of Dementia he has? As u can see Lewy body dementia and Parkinson's are similar. I would ask for a Neurological eval while husband is in rehab to find out what is involved.

Yes, Rehab can not discharge him if they feel its unsafe to do so. So, if he is evaluated as 24/7 care and you feel you can do longer do it then claim "unsafe discharge". That you personally cannot care for him, nor can u afford to hire care. Your house also needs to be safe.

Helpful Answer (4)

I'll claim 'unsafe' because I must, even though he's really putting on the screws to 'let him come home to get stronger.' I don't know what will happen next. Thanks for the information on different sources of dementia.

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