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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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Thanks to everyone for their input and support. The situation seems in stasis and my question about telling of Spouse's 'future' was answered satisfactorily.
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If you care about him you will grant him his wishes and let him stay at home. If you have no feelings you will lie to him and let him stay where he is and get mistreated. He can get rehab at home. That's what I did with my mother. If he understands he will accept it and stay home quietly. A lot of seniors who understand and know about nursing homes and rehab centers, like me now, would prefer to go home and die at home. Most seniors hate nursing homes and rehab centers unless you work for them.
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pronker Sep 2021
Thanks for your input. I'm glad your mother's rehab worked well at home. About understanding from Spouse, he's not an accepting sort of person; he's a retired attorney and accustomed to fighting all the time.
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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.
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pronker Sep 2021
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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If there is no chance for him to come home, better to tell him as soon as possible so both he and you can be prepared.

It is sad it may go this way, especially during the most gloomy time of the year, Winter.

Prayers to you Both.
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pronker Sep 2021
Thanks for the thoughts and prayers.
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Pronker, prayers for you and your husband during this sad, difficult time.

Great big warm hug!
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pronker Sep 2021
Thanks for the thoughts and prayers, and the hug. (())
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Pronker, I'm so sad for you both.

Is there a geriatric psychiatrist at the rehab center who can possibly assess both DH's mood and ability to reason? I ask because it sounds like his anxiety is ramping up ( and that's distressing to you) and because his ability to accurately assess this situation doesn't sound solid.
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pronker Sep 2021
I appreciate your support and feel sad, too. He gave it a good long run.
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Oh pronker, pronker -what a terrible situation you both are in. I feel bad for both of you. It would break my heart if I were in your situation.

Please remember that your husband's health condition requires him to be in the NH . You are not keeping him there, his health is. It is not your fault or your doing.

You can (truthfully) tell him that he can go home when he gets stronger and can do xyz. You don't have to tell him that he might never get strong again. That would snuff out his only hope. So when he asks to go home, you can tell him that without feeling guilty.

Perhaps, in time, he will get used to the nurses and aides and the NH routines and care, and will come to accept his situation.

But if miracles happen and he gets strong and well enough, then he will get to go home.
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pronker Sep 2021
Thanks for the advice. I'll remember "you are not keeping him there, his health is".

He's getting despondent and not eating. This isn't completely new, but began about July when he'd turn down food, partially because his denture plate was being worked on, but also, IMHO, because he replayed behavior from the March-April 2020 isolation. Initially, he seemed okay with it but then he just lost it to despair. He's not very vocal about feeling bad, but he lost 20 pounds in about 40 days in those months from not eating, necessitating 4 ER trips from blockages, etc. To me, it says a lot about, perhaps, weariness with life and his PCP knows all this. We applied for Medi-Cal for him today for eventual placement (if it comes to that) because I simply do not know what else to do.
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You have an aging sick person to deal with and he is not able to or willing to accept this. YOU cannot do or say anything as he will deny or fight you or simply not understand. Listen to his complaints and understand and say you will speak with the doctors as they must handle all decisions. Pass the buck. DO NOT TELL HIM - let the medical people handle this to bear you the consequences and being the bad guy. And make sure you put YOU as #1 first. You are living life now - he lived his life. Think of YOU first and tend to what is best for you.
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pronker Sep 2021
Thanks for your input. I listen and deal with his anxieties as best as I can. It's like being in front of a fire hose when he talks for twenty minutes straight. He now has his first ever flip cell phone to learn to use, which ought to simplify getting and receiving calls. Visitation pushed back to the 28th of Sept. because of one patient, no staff, testing positive for covid.
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I feel so sad for you. My husband is in MC and has been there for 1 year & it breaks my heart that I can't bring him home. When he asks when can he come home, I tell him he can come home when he's better and that seems to satisfy him. When he was home & I was taking care of him there were so many issues and he fell quite a few times. It was very challenging. I knew I just couldn't do it. He's doing a lot better & it's very hard for me to see him there, but, I know he's better off and well cared for. I visit him every other day (when not on lock-down) and we talk on the phone.
I miss him everyday! It's hard home alone without him but I know in my heart I could not give him the care he needs.
My prayers are with you, I know what you're going through.
Peace and love to you, God Bless.

I wish you lived close by we could help each other.
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pronker Sep 2021
Thanks for your reply and caring. It's difficult to see all the things he left mid-attention, the open computer screen, unopened mail, and so forth. It's something I have to drill into my head each hour that he's under a roof and being well cared for.
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It sounds like he is having some reactions due to the vaccine. Many people have been having problems. Uncontrollable tremors is a common symptom.

For God's sake please get him out of there as soon as you can! He is right, he will do better at home. If you tell him he is there forever, he will fall into a deep depression. Do everything you can to find a way to bring him home. He needs you to be strong now and HELP him come home.
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DrBenshir Sep 2021
NO NO NO. It isn't safe. She can't take care of him and they can't afford in-home services. If he comes home he will be back soon, probably in worse shape. I've seen this too many times: the big guy in poor health falling on his exhausted wife and both of them getting hurt. If he needs rehab, he has to stay where he can get it and they can afford it. Reassure him it isn't permanent. The more he participates and the harder he works in rehab, the faster he comes home.

Pronker: If he says he is going to sign himself out, tell him he has to go into a nursing home because you aren't strong enough to take care of him. This isn't permanent and might never be. He will get stronger faster with daily rehab, and it might just save you too.
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I would tell him he needs to keep getting healthier and that he will be getting the treatment he needs where he is at. I would not take him home because you won't be able to provide him with all the care he needs.
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pronker Sep 2021
Thanks for your input - it's something difficult to say but I'll simply tell him the truth about my status.
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Tell him As soon as the Dr says he's strong enough, he can come home.

VA allows up to 30 hrs a week Care Help.

He will be much happier, feel safer and be Less depressed and will live longer in his own home.
He can fall there just as easily as his own home.

Happier People heal faster.

Hopefully he'll be able to go home
which is where he should be as soon as the Dr gives the OK.
Do to him what you would want for yourself.
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pronker Sep 2021
Thanks for your input. The VA told me 'at home skilled nursing, PT and OT 12 hours weekly' so I'm curious about your 30 hours estimation, could you please elaborate?
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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.
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pronker Sep 2021
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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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.
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pronker Sep 2021
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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"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.
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pronker Sep 2021
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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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.
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pronker Sep 2021
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.
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pronker Sep 2021
Thanks for replying and yes, I'm worried! Good idea to involve the staff.
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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.
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pronker Sep 2021
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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Please ask the doctor to evaluate him for Parkinson's disease. Hand tremors and "falling" are some of the symptoms of Parkinson's disease. There is progression in this disease. There are also medications that can help in the early part of the disease. Have the doctor talk to you both about progress and prognosis after evaluations are completed.
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pronker Sep 2021
Thanks for answering; Parkinson's is a concern.
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Pronker, thanks for the update.  I do see some good news - something about which to be happy.   I don't have any good suggestions beyond those already offered, but I am glad to learn that progress is being made.
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pronker Sep 2021
That's nice to hear!
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I've not been in your exact situation but could you truthfully tell him that he can go home when he can do all his ADLs by himself? He is a big guy and it is not reasonable for him to expect you to be physically aiding him. Be his cheerleader and encourager. And take care of yourself. I liked Notgoodenough and BarbB's responses.

Also, his shaking may be due to "essential tremor":

"...a neurological disorder that causes involuntary and rhythmic shaking. It can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you do simple tasks, such as drinking from a glass or tying shoelaces.

Essential tremor is usually not a dangerous condition, but it typically worsens over time and can be severe in some people. Other conditions don't cause essential tremor, although essential tremor is sometimes confused with Parkinson's disease.
Essential tremor can occur at any age but is most common in people age 40 and older."

Source: https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534
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pronker Sep 2021
Thanks for the reply. The tremor could be what we used to call "the palsy" and we just assumed it came with some folks as they age. It's a critical time now because his incontinence worsened so that he cannot feel either urine or feces coming on, which his rad doctor predicted in 2011; he's still in pain from the broken ribs and needs pain meds injected; he's threatening to dismiss himself. I just now talked to him and he's concerned about being in rehab "forever." Well, he's right to be.
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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.
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pronker Sep 2021
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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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?
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pronker Sep 2021
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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