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Joined: Tue Nov 02, 2010 5:47 pm
Posts: 4
Post New to Forum
Hello all, I'm based in the UK. My mother is 74 and has many of the LBD symptoms outlined in this forum. Her doctor thinks she has LBD too but cannot get her diagnosed as she refuses to go anywhere near a hospital. She lives on her own and I get to see her 5 or 6 times a year as I don't live nearby.

She has had hallucinations for a couple of years now and is quite frail. She has Parkinson type symptoms and can no longer cook for herself because her hands shake so badly. About a year ago she collapsed, being eventualy found by a neighbour having spent all night on the floor. She spent a month in hospital after that and was eventually discharged with carers coming to see her at home three times a day so we all felt she was safe. Since then she has cancelled all her carers and refuses most offers of help.

She has been quite unwell lately seeing many imaginary people and is a constant worry to her neighbours. I have been told only yesterday that physical illness, thyroid problems etc, can mimic dementure symptoms and we should get these ruled out first. However as she won't go for any tests it is difficult to get to the bottom of what is really going on. Has anyone else had to deal with a situation like this or have any advice as to how we might handle the situation?


Mon Nov 08, 2010 8:32 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: New to Forum
Welcome, Dave.....

Since you don't live 'nearby' your mother, I would enlist the help of the neighbor who found her on the floor. Let the concerned neighbors know you need their voices to add to yours. She definitely needs someone to watch over her.

It is a very common problem on this side of the pond. My aunt spent the night alone on the floor after falling. My husband's father fell out of bed and spent a day wedged between his bed and the end table before someone heard him. My own mother was on the floor after falling and I just happened to phone her at the right time. He hip was broken in the fall and she crawled to the phone to answer my call. I knew immediately that something was wrong.

When my father was still alive, my parents had neighbors who were very concerned about their needs. They were afraid that one of them would drop something in the kitchen and cause a fire.

There are no easy answers.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 9:05 am
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Joined: Tue Nov 02, 2010 5:47 pm
Posts: 4
Post Re: New to Forum
Leone,

Thanks for your wise words. The neighbours are staying involved thankfully and they are increasingly ringing me or texting me telling me their concerns, when to come and see her etc. I am so grateful for their help, but somehow I want it to be better than this for everyone involved. Maybe that's not possble at the moment?


Mon Nov 08, 2010 9:39 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New to Forum
Dave, welcome to the forum and God bless your efforts on your mother's behalf. Have you considered gaining legal guardianship? [It might be called something different in the UK]. It does sound as though your mother is no longer capable of making decisions and could be considered at risk. Does she currently have a health care power of attorney?

_________________
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.


Mon Nov 08, 2010 10:22 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New to Forum
Dave,

Have you made contact with the very helpful Lewy Body Society in the UK? See lewybody.org. The top expert in DLB is from the UK -- Dr. Ian McKeith -- and he's involved in the Society.

There's another member of the LBDA Forum in the UK with a tale similar to your mother's. (Leealison is the username.) We haven't seen her for a long time. They finally had to get a particular social service department involved that forced the parent to move into a care facility. You might do a search of past posts by Leealison to get some of the history. You can also contact her through the LBDA Forum.

I encourage you to read Dr. Brad Boeve's "Continuum" paper from 2004 (find it on lbda.org) as it has a treatment regimen for LBD symptoms, including hallucinations.

Will any MD she has seen in the past be willing to prescribe medication for her? Is there such a thing as an MD who makes house calls? Or perhaps an RN (who works for social services).

Robin


Mon Nov 08, 2010 2:20 pm
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Joined: Tue Nov 02, 2010 5:47 pm
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Post Re: New to Forum
Power of Attorney is something I've been thinking I should get, but how to raise it with her?

If I spend a weekend with her she seems to get better quite quickly - not totaly, but better than she was. After several phone calls to the doctor I managed to get him to make regular monthly visits to check on her but it is limited as to what he can do as he's a generalist (not a dementure or LBD specialist) and he can't treat her against her will. About a year ago when she was in hospital I insisted they do a mental capacity test thinking she would probably fail but she passed easily... so I'm not really sure what to do next - is this how these things usualy go?


Mon Nov 08, 2010 4:50 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: New to Forum - Dave
I'm smiling, Dave. Join the club! That's exactly how these things go.

I'm 75 and I know that if my kids would call and tell me that they wanted to have Power of Attorney, I would tell them to get lost. I sort of tricked my husband into it. We did it for both of us in case the other was incapacitated. He didn't mind that way. I don't know what trick may work for you. :P

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 5:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: New to Forum
I think people with LBD often pass the cognitive tests. If they had tests for visuo-spatial perception, line orientation, executive function, things like that, they would probably fail early on. I know these are the areas that affected my husband before any other symptoms were evident. He would drive too far to the left in the lane but insist he was in the center, see an object as straight when it was crooked, see illusions like the wheels of the car turning when the car was parked; he has been unable to plan or implement complex tasks for quite a few years now. His vocabulary remains impressive and when he can't find the right word can often find a viable substitute. At present, though, he is unable to string more than two or three words together before losing his focus and is quite unable to follow the content of conversation. His hearing is hyperacute [another odd feature of this illness]. He just lacks comprehension.

_________________
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.


Mon Nov 08, 2010 5:11 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: New to Forum - Pat (Mockturtle)
Maybe we should design a better test, Pat! I agree with you. Dale can't draw a clock face but he usually knows the answers to most everything else they ask. (I'm not sure he could have ever drawn a clock face - even before Lewy. :lol: )

I find myself wishing I knew what the future holds. Dale is beginning to lose his train of thought. He'll begin to say something and after just a few words, the thought is gone. It makes me so sad.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 5:25 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Power of Attorney
I waited way too long to arrange for Power of Attorney, after all we had been married over sixty years and everyone knew we "were one", why should anyone doubt my word with him... none of the family members would cross me where his care was concerned :!: but I began to meet with legal issues so I called our long time Lawyer friend who offered to come to our house and bring his legal asst. with him, I arranged to have my near-by dau. in law on hand for an extra witness. I went to Mr Bobby in his bedroom and told him of the plans and reasoning. He said that he wanted to continue the way we had been doing but he would sign, however, when the Lawyer began with the visiting and brought out the paper work, his mood changed and Mr Bobby tried to back out :shock: saying,"I don't need no blankity blank lawyer, my wife takes care of our business!". I told them all to stand back and I would do the coaching then with me guiding his pen to the line where he should sign, he affixed his signature starting at that point and gradually rising, but definitely ledgible, page after page. When it was finished he asked the lawyer, "Now, does that make you happy?", the lawyer answered that it did and Mr Bobby told him not to bother him any more. I thnked my loved one and we went to the dining room table to finish. Our lawyer remarked with a wry smile, "I can easily notarize this document as him being of sound mind when he signed". We said our godbyes and it was done. Mr Bobby never mentioned it again. He was such a sweetheart.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Nov 08, 2010 6:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: New to Forum
DrP,
Hilarious story! You picked a good attorney!
Robin


Mon Nov 08, 2010 6:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New to Forum
Dave,
Welcome to the LBDA forums, sounds like you are in a tough situation with your Mom. Sadly it might come down to another hospital bout before much can be done with her refusing care.
I wish you well and hope you can find the right solution for your Mom's care!

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Irene Selak


Mon Nov 08, 2010 10:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: New to Forum
Hi Dave, welcome to the forum. I have some idea as to what you are going through, as my dad who lives 500 mi. from me was doing a lot of falling last year. I finally convinced him to move to an ALF when I pointed out all the falls he'd had and how he could have frozen to death during one of the falls in Feb. where he was half out the door on a below freezing night, could not get up and had to use his cell phone to call for help. He ended up in the ER that night, most unhappy.
Luckily, he had given me medical POA the day after my mom died, 13 yr. ago, so when I really needed to use it, the legal documents had been in place for many years. If I survive my husband, I will do that for my children too, so they can do what needs to be done to take care of me if this sort of situation arises.
I hope you can find a good atty., social services and drs. who can help you at this very trying time. Someone needs to take over for your mom for her own sake.
I hope you visit the forum often for support, Dave.
Dorthea - really enjoyed your story! 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.


Mon Nov 08, 2010 11:41 pm
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Joined: Tue Nov 02, 2010 5:47 pm
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Post Re: New to Forum
Thank you all for your comments, it's good to find there is support when you need it.

I stayed with her all last weekend, she wanted me to take her to the supermarket and then didn't want to buy enough food for even one meal! She can no longer cook for herself and can't get down the shops on her own, although she has someone do some shopping for her once a week but it's not enough really. I did make some progress though this weekend, she now accepts she has night time incontinence and I was able to help her with that.

I listened to her stories about her imaginary visitors again but noticed a change this time - she used to find her visitors comforting but now they won't leave when she wants them to go and it's getting tiring for her. One time recently she called the police to get them out of the house. The police were good though, they sent a community officer to see her after that. A few days later she called a taxi to take some more 'visitors' away, but the they refused to get into the taxi, poor taxi driver, I think he was very confused!


Tue Nov 09, 2010 5:38 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: New to Forum - Dave
I love that idea. I think I'll call a taxi when my Dale has 'visitors' who won't leave.

You gave me a great laugh today. Thanks so much! (I can't stop giggling...)

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Nov 09, 2010 8:16 am
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