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Posted: Wednesday, November 27, 2019 8:12 PM
Joined: 12/28/2016
Posts: 1

My younger brother was diagnosed with dementia probably about three years ago they felt it was possible Lewy bodies ? He has been in a total of seven different Group Home settings in the hospital twice the smaller Group Home settings were not working for him all he did was said no activities no nothing he has declined rapidly just in the last three months. We finally got him into a larger facility where they actually do activities and he has been there for one week so far we are very happy. The problem I have is when I go to visit him the only things he says to me is that he’s dying.. Conversations don’t really happen much anymore. When I leave or even sometimes when I’m not going to leave he grabs onto me so tight that I can’t get his hands off of me. I have heard this is very common in dementia I have a real hard time with this I tend to cry a lot. I have a sister that is a nurse that helps out with a lot of things but she lives in Virginia I am the only One in Wisconsin that can visit him I guess I just don’t know how to respond or what to do when the grabbing starts I have been told just don’t tell him you’re leaving but that’s very hard for me to do don’t give them a hug which is also very hard for me to do. I don’t know if I should sit and ask him or tell him that some of these things are due to his dementia I don’t wanna do anything to hurt him any suggestions much appreciated thank you for listening
Posted: Wednesday, November 27, 2019 8:55 PM
Joined: 6/20/2016
Posts: 2302

I hate to tell you this but you're going to have to buck up and not cry and not get emotional.

If he says he's dying, ask him what he thinks about that.  Let him talk.  Hold his hand.  Ask him what he did that day, chatter about what you are doing.

It's best in a new setting to plan your visits to end with him being taken to a meal or perhaps an activity and you slipping out the door.  If you tell the staff when you come in that you're planning to leave at a particular time and would they take him somewhere for you so you can get out the door that will help.

He's having a difficult time being moved all over and needs to adjust to his new place.  You can help by not crying when you see him or have to leave, and start thinking about the facility as a better place for him where they can keep him engaged.  

Is he still walking?  Can he take you for a tour?  Even if he's in a wheelchair ask him if you can wheel him around and can he point to people or things he likes.  Also, bringing a favorite snack can help fill time too.
Posted: Thursday, November 28, 2019 4:03 AM
Joined: 3/6/2017
Posts: 2206

Hi and welcome. I am glad you found us, but sorry you have a need to be here.

A couple of thoughts-

A week into a new group home is still very early days, you and your brother need time to adjust. Often things settle down more after 2-3 months.

It is generally never a good idea to talk about dementia with those who have it. The disease process has likely destroyed his higher order thinking which means you can no long reason with him. If he has anosogonosia as part of his presentation, he doesn't appreciate that he is impaired, so telling him his problems are the result of something he doesn't know he has will not land well. 

It's hard when conversation no longer happens. Some people bring picture books or family albums to look at together. My friend did puzzles with her mom. I always brought my dad a treat of some sort- a fresh soft pretzel, his favorite ice cream, fast food lunch. 

I found it easier to visit for short drive-bys as dad fatigued quickly. Early on when he was very agitated, I met him in the common area after a meal. Sometimes my mom would join him at the musical activities he tended to enjoy. At first, I slipped out while he was in the bathroom, headed to dinner or said I had to use the bathroom rather than say goodbye. 

Good luck.
Posted: Thursday, November 28, 2019 9:51 AM
Joined: 12/26/2018
Posts: 22

I know the feeling of desperation that you describe about how to leave.  I continue to have to lie to my mother about leaving her facility.  She doesn't understand that she lives there; her delusion is that she lives at home with her sister (who now lives on the opposite coast after breaking her pelvis).  My main go to line is that I'm going to the bathroom.  Sometimes I say that I'm going to get something.  Nine months after placement, my mother sometimes understands that I'm going somewhere and asks if I will be back soon which suggests that she has grown accustomed, to a certain extent, to this leave-taking, without understanding that it is happening at another level.  It is a really difficult feeling. Yet, I tell her "fibs"  because it causes her the least amount of anxiety and disruption.  Telling her that I'm leaving would definitely make it worse for her. This was very hard for me in the beginning but is getting easier now.  I time leaving with an activity so that she can focus on something else.   Also, while I know that this is really hard for you, and I'm a bit unclear in your comment if you breakdown while trying to leave (or later), what is easiest on the person with dementia is to withhold your own emotions at the time that this is happening.  The person with dementia isn't really able to process your own emotions.  When I first placed my Mom in a facility, I wrote in here about it and someone responded by saying that they spent "a lot of time crying in the parking lot."  I have, too.  It's tough.  And, I think that over time, it will get easier.  Just a note on talking about dying -- my Mom does this at times, too.  I talk to her about it.  Sometimes she'll talk about the clothes she wants to wear at her funeral.  I got her anointed, as she is a Catholic and I thought it might bring her some peace, recently, when it emerged again as a persistent topic.  Maybe just talking a bit about death with your brother would help him?  Maybe there are some things that you can do with him to help ease his anxiety about it.  For my mother,  the topic of dying comes and goes.  I bet that, at this point for your brother, it's bound up to some extent with his anxiety about moving to a new place and will ease when he becomes more comfortable.    I wish you the best.
caregiving daughter
Posted: Thursday, November 28, 2019 9:59 AM
Joined: 11/27/2012
Posts: 2130

Will your brother have the same physical reaction if he is in public? Would he have the same reaction if someone is with you? Could you accompany him to a game of bingo and then when he is distracted could you say a quick good-bye?
Posted: Thursday, November 28, 2019 5:21 PM
Joined: 3/10/2019
Posts: 145

Hi Merilee,

Sorry to hear you and your brother are having such difficulties.  Lewy body dementia has a number of unique challenges.  Do you have a good geriatric psychiatrist or neurologist you can work with to fine tune medications?  My husband also has Lewy Body and has been more stable on a combination of Depakote (mood stabilizer), Clonazepam (anti-anxiety) and Seroquel (antipsychotic).  That being said, he still has bouts of anger and agitation that seemed to come from nowhere.  He has very erratic sleep patterns and has had a number of falls.  Hallucinations come and go.   I moved him to memory care at the end of August, and it took about 5 weeks for him to adjust.  I (on the other hand) am still adjusting.  I started taking a low dose anti-depressant and it keeps me from crying when I see him.  The visits go much better when I bring positive energy and love instead of fear and despair.  

There is an excellent Lewy body web site with good information here:

 Hang in there. A wise person once told me that everything with dementia (the good and the bad) is only temporary.  As soon as you adjust to one phase, he will be in another. Good luck to you.


Jo C.
Posted: Friday, November 29, 2019 1:28 PM
Joined: 12/9/2011
Posts: 10860

It is a very good thing that you have found a better living situation for your dear brother.  There will be a period of adaptation not only for him, but also for you; it takes time to settle in and feel more comfort and security.

If you feel that your brother has anxiety, it may be that the doctor may wish to assess his present medications and make some adjustments or add an, "as needed" med to help with the anxiety symptoms

It is of no avail at his point to tell your brother that his dementia is causing his symptoms, he really cannot process that as you are able to.  It is best to have the med needs evaluated and have the staff work with him to help him feel more secure.

I also learned with my Loved One, (LO), not to let my LO know when I was leaving.   I just said I had to use the bathroom and then left.  I had also spoken to an aide or other staff member and asked them to engage her or lead her to a different focus when I left.  That worked very well and eliminated the separation anxiety.   My LO never remembered that I had been there and left to use the rest room so to speak.

It takes a bit of time to adapt and to get dynamics into place. It may be a good time to ask for a multidisciplinary patient care conference soon.  These are required by law, and in this, you can discuss your brother's needs with staff and a good plan of care can be developed to address these.  Usually an RN supervisor, dietary, social services, activity director, an aide and others will attend such meetings. They are not lengthy, so it is best to make a list of concerns to bring with you so nothing is missed.

Let us know how it is going, we will be thinking of you.


Posted: Sunday, December 1, 2019 11:30 AM
Joined: 10/9/2014
Posts: 1087

Has he received an actual diagnosis? You say that it is thought that he has Lewy Body dementia.  Are you his Healthcare POA?  I might explore this and confirm his diagnosis, so, that if there are medications that might help him with his mood, that can be prescribed. It's important to know what he has, so medication therapy can be evaluated.  I would also research Lewy Body dementia, if that is his diagnosis and learn how it presents itself different from other conditions that causes dementia, like AD.

I'd try to accept that it may not be possible for your LO to process how dementia is affecting him.  So, talking about it or trying to explain might bother him or confuse him.  Seeing you upset, would likely cause him worry too, so, I'd work on being positive when you visit. Perhaps, have a list of things you can talk about in advance. Even if he doesn't speak, you can still chat and keeps positive.  You can still share things about your day, the weather, etc.  I go into the MC with my LO's new clothes, photos, etc. and start telling her what I brought her. She is no longer verbal, but, I still talk about how I hope she'll like the new sweater, new throw, etc.  I hold them to her so she can feel them, comment on how I hope she'll like them, etc. I talk to other residents and staff, if they are nearby and compliment my LO. Things like how I like her curly hair, nice complexion, blue eyes.......things that will make her feel positive, if she can understand me. 

Does he like music?  I'd consider playing a music video of music that he enjoys. Words are not really needed for that. 

If he is holding you too tight when you try to leave, I would consult with the staff and ask for options. I'd try to cooperate with what they say, as they encounter these types of things a lot. I'd try to keep it positive and not create a lot of drama surrounding saying goodbye.   

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