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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.

So glad someone brought up caring for yourself and the toll caregiving for a difficult loved one is. I readily accepted meds for all the stress caused problems from high blood pressure, anxiety, gerd and insomnia. Add in- person counseling to that. When i am no longer a caregiver i know that my health will be the better for it.
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Reply to Bellerose63
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Given his many issues, bringing him home would endanger him and you. Then you both end up needing and moving to professional care in a facility. Ask yourself if that's what you want.

This is one of those situations where you MUST deal with things as they happen, not anticipate what MAY happen. I'm so sorry. We all find ourselves in these difficult situations, so I understand. Stay rested, engage in pleasant activities that YOU like, and then you'll be more prepared for what comes next. This would be a good time to ask your doctor about meds for your anxiety. They could make you feel better fast.

I wish you luck with all of it,
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Reply to Fawnby
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Nurses/cnas are not at fault for keeping families up to date. We are not, or should not be, entitled to “therapeutic fibs.”

I would have asked this nurse what has worked for other clients.
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Reply to PeggySue2020
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Hello, I am sorry to hear all this. I don’t know of any way. My mom was determined to keep my dad who had dementia and other health problems at home and he kept falling and she could not help him up. Even on hospice and with paid aides around the clock, the aide would turn her back for a minute and he would find a way to fall. I don’t think there is any way to prevent it. I’m so sorry.
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Reply to Suzy23
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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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In my opinion, tell second shift nurse: thank you for being there. We appreciate you and the care you and your team are providing for our dear xxxx. Have a good evening/shift.
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Reply to Beethoven13
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You asked about home care and if there is something else to be done, other options. We had private and agency care for my father at home after a stroke at age 92. I am a 60 year old now only child who moved back home from two states over to manage all this. My dad was an amazing father and a good person. It cost close to 200k per year and nearly cost me my sanity and health. I had a cancer scare in the middle of this and work full time. You placed him. Let them care for him. Don’t buy into the manipulative texts from nurses. They should be caring for him and providing what he needs and telling you things are okay and get good rest. Or you should be telling yourself that. There is no easy answer at home. If his needs are high, you will deal with endless caregiver drama, missed expectations and a complete consumption of your life and time. If the staff or care is shxx at current place, move. Home care unless is very minimal or person just needs supervision is frought with problems. And is very costly and still involves you as supervision. If you live a long way away, maybe it’s different. But doesn’t sound like you do and things came crashing down, when I became local. Dad died at 94 after 15 months on hospice. The last few months were awful. You are paying for care. Demand that he gets it. There is nothing easier or better at home, in my opinion. Unless you want to spend over 200k per year for private care and still have to over see everything.
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Reply to Beethoven13
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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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Reply to GAinPA
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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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Reply to Beethoven13
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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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Reply to AlvaDeer
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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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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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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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Reply to Daughterof1930
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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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Please stop feeling guilty. You did not give your husband dementia. You did not will a back problem for yourself to get out of caring for him. You were dealt these cards and it is up to you to navigate the best course of action for the two of you.

This nurse should be doing her job and not guilt tripping you. This is unprofessional behavior and I'd report her to her boss.

It sounds like he is in a decent facility. Just acknowledge that there is not much you can do in this sad situation and go visit and be with him.
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Annewilder Feb 8, 2025
Thank you......you are so helpful.....and i know the honest truth but had a very deflating moment last night.
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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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Reply to BarbBrooklyn
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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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Just wanted to add to all the wise advice here that I am rooting for you as you do your best to intelligently and compassionately manage your husband’s very difficult condition. Hope the new meds begin to bring you both some relief.

Thinking of you! 😊💐
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Annewilder Feb 8, 2025
Thank you for your kind words.....my brother is caring for his end stage Parkinson's wife in their home....she is 100 lbs...he is 200 and has a good back.....he is my rock.
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I’m so happy you found this site. I hope it can hive you some comfort knowing you are not alone.

No, you can’t bring him home. It’s not safe for either of you.

I think you have a problem with that nurse that texted you. You may want to check with the director of nursing. Sounds very unprofessional.

We’re thinking of you. Take care.
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Annewilder Feb 8, 2025
Thank you for your support. I know you are right.
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Someone calling you to whine and offering no solutions? Block that nurse and only deal with the admins. S/he is 100% unprofessional.

That being said: is your husband on any meds for his behaviors, whatever they are? If he isn't this needs to be explored. If he is, then maybe his meds need to be reviewed/adjusted/changed.

You cannot take him home under any circumstances. You cannot possibly take care of him yourself. I wish you success in finding a solution and peace in your heart that you are doing your best for you both.
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Annewilder Feb 8, 2025
I am so g
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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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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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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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Reply to MG8522
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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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