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My husband is 73 with dementia. One year ago he went to a skilled nursing facility after 3 months in memory care. The memory care was preceded by 12 falls at home requiring fire department lift assist. He is 230 lbs. Currently he is sundowning 5-9 PM. On one second shift the nurse complains all the time about his behaviors and I know they are difficult. The other nurses just tell me that it is part of the disease (which I know). Tonight the nurse texted and said, "It was so bad after you left." So, I am wondering do I try and bring him home? He is safe and well cared for there. I cannot move him at 230 lbs. I cannot afford around the clock help. I get back injections 2-3 times a year now and I know that I will get hurt if I bring him home... but the guilt and worry that he will be asked to leave is overwhelming. Yes, there are all sorts of meds in place and new ones being tried for this. I am just having a very very low moment tonight and found this website. I couldn't believe how it was sent to me when I really needed some support. Thank you.

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You need to speak to the head nurse or executive director or someone equivalent at the facility and ask that this nurse cease and desist with her complaining to you. If the rest of the staff recognizes his behavior as part of his condition, and you and they are working on medication adjustments to try to curb the behavior, then it is unprofessional and unfair for her to guilt-trip you this way.

It would be different if the full staff was united in making recommendations to you and your were refusing the take corrective action or face the reality of the situation. But you are fully aware and working with them in good faith so she is out of line.
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Annewilder Feb 8, 2025
I will do that on Monday....., his meds are in a tapering schedule right now.....and i know that we have to try things before abandoning them..it's just so hard.
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No, you can't bring him home and should not even be considering the possibility of that.

If the nurses at the fully-staffed care facility he's in are complaining about handling his difficult behaviors, you certainly would not be able to cope with them at home.

It is extremely unprofessional for a nurse to ever call a patient's spouse or family to complain about them. That is outrageous and if I were you I would report her to the Licensing Board because her nursing license should be suspended for that abusive, gaslighting behavior.

The care facility your husband is in collects a FORTUNE to meet his care needs. They need to do the job they are being paid to do.

The only time they should be contacting you about his behavior is if they want to try a medication and need your permission to do so. Or his behavior has resulted in him injuring himself or another resident. That is the only time. Please remember this, and do not attempt to remove from residential care and bring him home. Look for another facility if you aren't satisfied with the one he's currently in.
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faithfulbeauty Feb 9, 2025
@BurnCaregiver,
I totally agree! The nurse was out of line. The only calls I ever get are about changing medications or when he had to go the hospital.
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You have answered your own question, that of course you cannot bring him home. I’m glad you found this forum because you will receive much needed support here. You are already doing the best you can for him and you are doing it out of love, so no guilt please. It sounds like most of the staff is working well with him and trying to figure out effective medications— I agree that this nurse’s behavior is unacceptable.
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Annewilder Feb 7, 2025
Thank you and MGB522 for the responses. I know I cannot do this....but I just feel so bad for him and for the staff. I am there 5 hours a day. I go help him with lunch and dinner. I stay until he quiets down in the evening...then I go home a few miles away. In no way am I blind to his behaviors. We have new meds going as of Wednesday. We have to let them have a chance. I cannot ask them to abandon them one day after he starts them. Thank you for your kindness.
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Welcome, Anne!

Your husband's sundowning is not within your power to fix. With time, the professionals at the facility will find the correct cocktail of meds to give him some peace.

In the meantime, talk to the DON about the harassment you are experiencing from this staff member.
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Annewilder Feb 8, 2025
Thank you......and, as you can imagine, I am cautious about retribution.....would she not care for him as well if I complain....so I will make some decision about how to word this to the DON.
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I’m sorry for your pain in this, such a hard time in life. The nurse was completely inappropriate to text you, caring for your husband is part of her job, and griping to family is not right, just shows she’s not having a good day or can’t handle the job well. You said it all with “he is safe and well cared for there” Don’t let one text derail what you know to be true. You also know his needs are beyond what can be handled in a home setting by you, nothing to feel guilty about as you cannot fix this, it’s simply beyond any one human. I wish you peace
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cover9339 Feb 8, 2025
To be honest, night shift can be difficult for nursing staff and aides.
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I would be telling the Nurse, "so what do you think I can do about it". There are times when a nurse or aide must call you by law. One is if he falls the other if he is being taken to the hospital. There maybe other times. He is where he is because you can't care for him. She is a Nurse working with Dementia patients and should know how to handle him. She is the one that can go to the doctor and request medications. She is the one who makes big bucks to care for your husband. (My daughter is a nurse)

Go to the Director of Nursing and ask that unless its an emergency, you want no calls. Why complain to you when there is nothing you can do about it. If the DON does nothing, then the Administrator. Maybe this Nurse does not belong in this type of work.
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Annewilder Feb 8, 2025
Thank you, ann29.....I had a tough evening last night....and i needed some reassurance.....thank you,.
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There is no answer to those moments that are "so bad".
They are now a fact of his life and yours.

You can certainly speak to the doctor about an adjustment in medications.
And if your visits are creating more problems for him than help, then I would cut them down.
I would speak intensively with the Admin. Call and tell him/her that you are getting reports that your visits are leaving hubby distressed and agitated.
Ask the admins to discuss with his caregivers this week their observations and their assessments as what would help in their opinions. Arrange a personal meeting then for one or two weeks, after said information gathering is done.
Do they think any of the following might help?
1. Medication adjustment by the doctor?
2. Change in visit patterns?

This is NOT about going backward.
You have moved forward because you HAD to, not because you wanted to, and your note to us states clearly behind the lines that you already knew the answer.
Did you simply want our reinforcement? Fine. You have it.
The answer to your question is:
" No. He cannot ever return home again".
NOT EVER.

This isn't a thing for guilt. You didn't cause and can't fix it. This is a thing with NO good answers, a thing about grief you cannot avoid no matter what you do. You cannot afford to mistakenly mix emotion with facts and practical needs now.

I am so dreadfully sorry. There are no good answers at the end of life with dementia. I am so sorry.
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Annewilder Feb 8, 2025
No I think I was asking if anyone had thoughts about a solution at home that I haven't considered. After 6 years of decline with 15 months in a facility I have not figured out a reasonable way to bring him home. Perhaps at end of life with Hospice and some paid caregivers we can manage him. Right now I cannot envision a way to do it. Thank you for your frank response.
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The difficult part is realizing your part is to facilitate his care. Guilt and worry can fog your mind when your priority must be your health & sanity. His meds are in place and new ones are to be considered. You got it covered. Everything has been thought out, implemented and subject to adjustment if needed. It's a journey and you have everything in place so don't second guess yourself. (IMHO: The 2nd shift nurse texting bad news and complaining all the time is what would concern me.)
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Nurse or aide person should not be texting you to guilt trip you or make you feel bad about him being there. That’s why he is there. You can’t care for him. They should be caring for him with appropriate staff and telling you, everything is fine. Have a good night. They should handle it. That’s what you are paying them for. Turn off your phone or block them. If it’s an emergency, call 911. If not, handle it. All the better, be unavailable and unpredictable. In my opinion, this facility staff is not treating you fairly.
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Thank you...I just need a friend tonight. (sounds like a country western bar song doesn't it?)
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