Hi! After fighting to get compassionate care visits in my LO's NH. I finally got in only to find a person that is totally disconnected and gone. He has end-stage Parkinson's, non-verbal, 100 percent disabled, and screams and cries all the time. The staff is hesitant to medicate him and I cannot win when I suggest.. He is up all night and I feel like when I visit he screams and cries more. Hard to know if it is pain or emotional- although it is also neurological. He seems to scream and cry more when I visit. It is difficult to take hearing the screams and there is no consoling him. I start to wonder if I am doing harm visiting. I will honestly never stop but between lewy body dementia, isolation of the past year, he's unable to verbalize anything- I wonder if my presence upsets and frustrates him because he cannot express himself. I feel like I lost him while he was in lockdown and I didn't get to say goodbye. Anyone else have something similar? Should I cut the visits down or visit more so he feels love? Just feeling so sad...

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When my grandfather was in the hospital dying (I was in my early 20s), I'll never forget the man who was his roommate. He was unable to speak except to moan, but it turned out that was the only way he could communicate. My grandmother always went to his bed to say hello even though it seemed to upset him, but after a while she realized that he was just trying to make a connection.

During the last few minutes as my grandfather passed away on the other side of the curtain, the roommate was completely silent, and I knew he was listening as we prayed for Papa. The nurse was with us listening to my grandfather's heartbeat fade away, then eventually she took her stethoscope out of her ears and quietly said, "I'm sorry," and we knew he was gone. We heard a quiet moan from the other side of the curtain, so I went over to the man and he held out his hand to take mine and had tears in his eyes. I realized that in spite of his ravaged body with no legs and an inability to speak, he was in there offering me comfort.

Keep visiting, because you're probably hearing more cries and moans because he's trying to communicate, not because he's distressed.
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Reply to MJ1929
invsbl Apr 30, 2021
That brought tears to my eyes. I used to be a CNA, MA, and worked hospice. We sometimes can't tell what or how much is going on, locked in the prison of a poorly functioning body. I had a patient that never talked except to cry out, "God, help me!" and moan when he was touched. I was gentle and talked cheerfully but quietly as I tended to him. Some nursing home workers told me they didn't like him because he used to abuse his wife. Made me wonder how they treated him. The man who abused his wife was gone. This was now him. One day when I walked in, he said "Hi Blondie." I felt like I'd been given an award.
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Oh my gosh, my mom just died in a hospice house with end stage. Parkinson’s disease.

Towards the end she was receiving morphine every two hours, along with Ativan.

No one should have to suffer. Please speak to the medical team about getting relief.

Parkinson’s disease is brutal, especially end stage.

There is no excuse for the symptoms not being treated with the proper medication.

I will keep you in my thoughts and prayers and say a special prayer for your loved one.
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Reply to NeedHelpWithMom
JustDaughter Apr 29, 2021
Sounds like she had hospice care in the facility. I was very grateful for their service.
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Not letting loved ones be seen has been devastating to the Seniors!

You should install a camera in the lo room so you can see what really goes on.

More thanks likely your love one only has someone check on L O four times in a 24 hr period, if they're lucky.

Senforcement places are all understaffed.

So sad that the person yells and Crys.

Try to find a way to communicate.

Go to visit more.

Try playing soothing music while you're visiting.

Give a foot massage, my 97 yr old Dad loves it.

Read to your LO from a Children's Bible and Children's Book.
Do not yell, talk in a little louder than your normal voice in case the person is hard of hearing.

Wearing ear plugs will help to drown out the yelling snd crying of the loved one.

Mare sure to hold their hand and give hugs.

A year of Lonleness and Non Touch has caused a lot of loved ones to pass before their time due to depression and just not wanting to live.


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Reply to bevthegreat

I am so sorry! ((Hugs))
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Reply to XenaJada

Request a care conference to get more info on his current status, share your concerns, and request an updated medical evaluation to see if meds for helping calm him are appropriate. I can’t imagine why not help with meds, but there may be info we don’t know. Definitely visit, even if it sometimes needs to be from a distance. It’s the way to oversee care. I’m sorry for the changes and how upsetting it is to watch
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Reply to Daughterof1930

My mom and I are locked in the same situation. She is only lucid when she has a UTI. She will badger the staff to call me then plead with me to take her home ending with a passive “ I guess no one cares”, “what have I done wrong?”, “I guess everyone is mad at me”. I talk a
bit till she winds down and becomes resolved. I started going in once a week and she hardly acknowledged my presence. I checked her supplies and washed, cleaned and clipped her fingernails. Cleaned her glasses and hunted down her bottom dentures (under the bed). Asked if she was hungry, she nodded yes and I said “go on down to breakfast”.

You ca not make him happy or peaceful. My advise is to focus on managing his care and safety and give yourself credit for what you have accomplished.
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Reply to GAinPA

Has he been evaluated for hospice? If not get the Dr to request it ASAP. They will offer comfort meds and be by your side as you navigate his journey. This visits are more for you than him at this point, so go as much as you can. Good luck and prayers for peace.
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Reply to GrandmaC

I am simply writing to support you during this struggle. Two suggestions play one of his/your favorite songs from the past every time you visit. That may trigger a sweet memory and calm him down. To ease the effect of screaming on yourself try wearing earplugs. It sounds crazy but people use them to concentrate or block noise to sleep so its simply something to try. If you are religious I would pray they whole time you are there, sometimes out loud so he hears you. If you are religious I'd ask your minister or priest to come and bless him. I'll be praying for him. "In the holy name of Jesus be healed, in the holy name of Jesus be at peace"
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Reply to Peggy52

While "isolation" might have played a part in this it is VERY possible that this decline would have happened, at the same pace during the same period of time.
the difference is when you see someone daily or even weekly you do not see drastic changes. It is when you do not see someone for months or a year that you see such a dramatic change.
You read posts here on this site...I saw mom for Thanksgiving and when I saw her for Easter I could not believe how much has changed.... or ... I moved away and when I came back for a visit I could not believe how frail they have become...

Talk to the doctor about medication of the anxiety.
When a person is non verbal noises are the method of communication. My Husband was nonverbal for about 6 years and he made lots of noises. Thankfully they were not screams but more of a moaning sound. Because of that I had to look for other cues as to pain level. Furrowing of the brow, a grimace, a flinch are some cues to pain level.

Is he on Hospice? If not you might want to consider that. He would get a bit more attention. And one of the goals of Hospice is to make him comfortable. (please do not interpret that as they will keep him drugged so that he is unconscious)
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Reply to Grandma1954
disgustedtoo May 2, 2021
What Grandma1954 stated in the first paragraph mirrors what I was going to say. Would the decline have been the same? Who knows. We can't go back for a do-over, but clearly whether we were allowed access or not, decline would have happened. That doesn't make it any easier, but this is where he is now.

Given LBD/Parkinson's, I would want suggestions from an expert in the field as to possible medications that might help. This, for me, would be beyond the capability/knowledge of a GP.

I haven't experienced this/these condition(s), so I did a little reading. This was a decent site:

Skipping to the section titled:

"Treatment of Behavior and Mood Problems in Lewy Body Dementia"

was useful as it has a lot of information about possible causes for behavior/mood issues and possible treatments, as well as side effects. This is a complicated condition, and might require an exam first to rule out potential causes that might have simple treatments, like UTI, another infection, imbalances in the blood, etc.

Sad as it is, I might prefer to be able to visit and find a way to tolerate or tone down/resolve the screaming... Due to virus protocols, bad eyesight, almost no hearing and dementia, it isn't clear my mother knew who I was when I did make several visits, once outside in nice weather and later inside in a special room. I KNOW she knew who I was because a staff member took a picture when I was delivering supplies and showed it to her. She asked why I didn't come in to visit. She also asked if I didn't want to see her. THAT hurt... Because of her lack of hearing, she had no phone so I couldn't call her or try video chats. The second visit was after she had a stroke. I do, to this day, kick myself I didn't break the rules, take the mask off and get up close. From various stories the nurse told me, she was still "herself" - it impacted her dominant side, swallowing and speech somewhat, but not her mind. It was still locked in at about 40 years ago and she was still as feisty as ever after the stroke. Several months later, she had another stroke, which took her from us before the vaccines and relaxing of visits. So, maybe tolerating the screaming and trying to get some resolution is better than the alternative?
This is a very difficult situation at best, and the pandemic has made things worse. You will be going through a range of emotions. Can you talk to the staff and his case manager about your concerns and confirm that he is screaming and crying all day and night? If so, it's probably not more when you visit. Ask them whether they think he is in pain and why they don't think he should be medicated. Medication might make him like a vegetable, is that better? I am now able to visit my mother (also in hospice) more frequently. I feel like I have to re-establish a relationship, which is difficult, because she also is not verbal. I talk to her, sing to her and do what I can to be a visitor who wants her to feel love and happiness. I was able to massage her shoulders the last visit and it did help her relax. I felt like she had been missing the human touch for the past year. Don't worry about saying goodbye. You can do that later. They call dementia "the long goodbye." You have to accept him for what he is day by day. When you visit, try to be calm, loving and positive. He may pick up on that. I'm hoping that when the weather is a bit warmer I'll be able to take my mother outside in her wheel chair and we can sit on the patio. She used to like that. Also tend to your own emotional well-being. Grief counseling might help.
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Reply to NancyIS

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