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 terrified of visitors 
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post terrified of visitors
hi!
My husband is terrified of visitors, even dear friends who would like to visit. If he could, he would deny access to his children even. He does not know why this is the case. He is upset if there is any change to his routine, even a tiny one such as getting up a little later than usual. To help him cope and make sense of his day, I have prepared a "check list" with times that he should wake up, times when he should take his pills - I hand them to him -. the time he will eat lunch and dinner, etc........This seems to help. I typed the list in large type and encased it in plastic. He refers to it often. I have a large calendar near the door and on it is the relevant activities that en can expect each day and a magnet which I place on today's date. He will only get on the phone with his children if I am on too, then he gets off after 5 minutes, because he is so tired and has nothing to say. Does anyone else have the problem of being terrified of visitors?
Hugs to all, God bless, J


Thu Mar 01, 2012 11:24 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: terrified of visitors
juliet..
my hubby is not terrified.. but is uncomfortable.. actually any change in the routine is not good.. he doesn't use the phone to call out, ever.. and only talks to his mom and sister when they call him... sometimes good conversations, other times he kinda just listens...

when we have doc appointments or we go grocery shopping. he is really off for the rest of the day.. its like it takes it all out of him.. so we stay pretty close to home...

we are at the middle to beginning stages.. depending on the day.. some good, some not so good. and some worse.... so will be watching to see the ideas, that are suggested by others..
take care
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Mar 02, 2012 11:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: terrified of visitors
Our house was full of 'visitors' all the time but he wasn't terrified of them. He did wonder about them and ask why I wasn't setting the table for them.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Mar 02, 2012 12:27 pm
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: terrified of visitors
Cindi,
I think we are in the beginning of the end stages of this disease. My husband has had LBD since 2006. His cognition is so much worse now and changed rapidly in just a few months. However, LBD is nothing if not unpredictable!

Concerning his fear of visitors: I just don't know if I should have my friends over for a short while from time to time or have no one - which is what i have been doing since November. He would not be required to see them at all, and I would only have a friend over when there is a caregiver here, otherwise, my husband requires my presence by him. Any thoughts?
thanks for replying, God bless, J


Fri Mar 02, 2012 1:31 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: terrified of visitors
When she lived at home, Mom would get nervous around visitors. There was an underlying reason. She was embarrassed by her trouble word-finding. Being a proud and capable person, she had never wanted anyone to see her in anything less than an "in control of herself" position. Not being able to have even a simple conversation, being incontinent, having poor motor control and all the rest was something she wanted to hide. There was, however, a point at which she was really frightened by crowds. I took her to a shopping mall, as I often had done, and the look in her face when she saw the crowd made me turn around and get her out of there immediately.

I think you've done all you could to assuage any discomfort he has around other people. You are certainly being very considerate. But he may not be able to see that. Lewy isn't very logical. When you have visitors, is there a physical barrier - a wall - between you and your visitor and your husband and his caregiver? If so, I can't imagine any more that you can do. Maybe try to find a lucid moment and ask some easily answered questions about what might bother him? Mom could have good "conversations" (nodding and pointing and making faces) for quite some time. Inspired by things that Craig and Tonya have said here, I would relate what they said and ask if that was what she was feeling. She seemed relieved that someone realized at least in part what it was like for her.

I wonder if our forum group could suggest questions you could ask your husband (that he could answer briefly or with gestures) to help narrow down his worries... What do you all think, my friends?

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Mar 02, 2012 3:42 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: terrified of visitors
juliet..

if there is a way your friends could come when he is napping or busy with the caregiver . or if he goes to bed early. i think for you, it would be wonderful.. i have allowed myself to become a bit of hermit, for him.. and i honestly think i would be a better caregiver, spirit wise and patience wise.. if had a bit of time with friends.. that isnt just on the phone or online... im a people person and im missing folks sooooo much.. i dont have a care giver, its just me... but im going to try and start figuring how to plug a few hours a month in...somehow..

maybe something like that would work for you too...
good luck... thinking of you...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Mar 02, 2012 5:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: terrified of visitors
My dad loved having visitors, but as time went on he could tolerate less time with visitors, unless we were quiet much of the time. He liked having me just sit there and read and be quiet, but be there if he wanted to talk. Except for a few relatives and a few friends, he didn't want to see many people towards the end, for the same reasons Kate just described. He usually knew enough to be embarassed and frustrated by his inability to communicate clearly and easily. Also, it was exhausting.
If your LO is giving you the clues that they can't tolerate CERTAIN visitors, or LONG visits, or whatever, I'd go by that. Asking questions about it when they are lucid may not give you answers that relate at all to what their body language is during the stress times. They've probably given you the answers you need.
Let us know how it goes. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Mar 02, 2012 5:10 pm
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: terrified of visitors
Thank you Lynn, Cindi and Kate. You have all given me something to think about with your helpful posts. I think my husband does feel very diminished and can't find the words to communicate and is embarrassed by the changes. He used to be such a wonderful conversationalist! As you all know, I can no longer talk to him beyond the very simple. I miss a good conversation, but I am also so focused on him that my interests have narrowed right along with his. If i have a friend over, I plan on keeping my husband in his part of the house! :-) Fortunately, this is possible. He lives in the old family room and has his own disabled bathroom. He has a large screen TV which he enjoys when he can hit the right buttons on the remote!
The idea of having visitors when he is asleep, is also a good one. I try and phone at that time and "hide" in another part of the house so I don't wake him. He tends to be a light sleeper whenever he hears voices!
Thank you again for your inputs. I look forward to hearing from you all. I can see why a forum such as this one is so necessary for us. I do feel alone and isolated as many of you do too. God bless, J


Fri Mar 02, 2012 7:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: terrified of visitors
Juliet,
I encourage you to have your friends over for a short period of time so that you don't feel so isolated.
Robin


Sat Mar 03, 2012 6:09 pm
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: terrified of visitors
Thank you, Robin, I will. God bless, J


Sat Mar 03, 2012 8:08 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: terrified of visitors
Juliet, I spent the day at a dementia conference. The speaker in one of the breakout sessions I attended (Pauline Boss) has some pretty strong opinions about caregiver stresses. In her opinion, "depression" is an over-used diagnosis handed out to caregivers who are not "depressed" but "sad." Depression responds well to pills. Sadness responds to human connections. Based on her talk I would say absolutely have visitors. Also arrange time when you can go out and do things with friends. Social connections are important to our wellbeing, and our wellbeing is necessary for our caregiving roles.

I'm going to work harder on my social connections.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Mar 17, 2012 11:39 pm
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Joined: Sun Mar 15, 2009 5:45 pm
Posts: 13
Location: Northern California
Post Re: terrified of visitors
Thank you for your post.
I have invited a friend over for tea for the first time in many months. My husband will "hide" with a caregiver while my friend is here.
You are so right. I have been without any caregivers for a couple of weeks, caring for my husband who is becoming increasingly demanding, which is totally unlike him. Poor lamb is trying to make sense of his restricted life with a more and more confused brain. It must be so awful for him!
Take care of yourself too.
God bless, Juliet


Sun Mar 18, 2012 12:58 pm
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