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?
I think he needs a chance to rehab from this recent injury before any decisions are made or communicated to the patient.
It is sad it may go this way, especially during the most gloomy time of the year, Winter.
Prayers to you Both.
Great big warm hug!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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?