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...
and/or try to guess what he would want, if he were an outsider watching the situation. what would he want for you and him?
hugs!!!!
i wish you and your loved one, well!!
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.
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.
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.
VISIT
Prayers
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.
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)
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:
https://www.nia.nih.gov/health/what-lewy-body-dementia
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?
He may need some medication to help him with pain and/or anxiety. Nobody should live with unrelenting pain or anxiety that causes outbursts of frustration. Try talking to his doctor about adjusting his medications or schedule. The doctor can talk with staff about making sure he gets the relief he needs.