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 hi, i'm new 
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Joined: Sun Feb 17, 2013 11:41 am
Posts: 12
Post hi, i'm new
i just started posting on the ALZ forum and someone there told me to check out the lewy body association.

my mom is 88, has parkinson's, and went into assisted living a little over a year ago. she has had well controlled parkinson's for many years.

however in the last year she began to have more difficulty with standing, walking, turning, and then numbness in her feet.

about 6 months ago she had an episode of confusion, and her memory has started to go. now she is having problems with word finding as well. she complains often about her memory, and she knows it is due to the parkinson's.

she also has high blood pressure. and when it drops, she faints.

a couple months ago she fainted at the assisted living place. she came to quickly but was very confused and weak. they were going to send for an ambulance but my sister went and got her and brought her to the ER.

once at the ER the docs got all excited about her blood pressure. we kept telling them that we were much more concerned about the confusion but they didn't listen. she was in the hospital for 4 days with the confusion getting worse and worse. it is now believed that she had hospital delirium. she doesn't remember any of it.

she went to a TRU for 3 weeks and they worked on getting her stronger, and teaching her how to use a walker. most of her confusion cleared, and she got even better when back at her own apartment in assisted living. however, she still continues to deteriorate physically and her memory is worse and worse.

she is usually rational and good natured (which is NOT her normal personality! she could be kinda mean...) even when she is struggling with word finding, memory, or weird stuff, like thinking someone stole her purse, or that she didn't have breakfast or her medications, when she did. when we gently point out these things to her, she says, "i'm getting weird."

she had a neuropsych exam scheduled before she went to the hospital but the psych refused to do it until the delirium cleared, so it has been postponed to april(but we will go in earlier if there is a cancellation.)

i have 2 younger sisters; one works full time and the other is disabled, so i go to all doc's appointments and do errands, etc. i am very lucky that my sisters are supportive of me, and we are all lucky that my mom is in a nice assisted living place, that she picked out herself.

i don't think she will be able to stay there forever so it is time to consider what other placements might be appropriate: NH? memory care?

i think we will have a better idea after her testing.

my sisters and i all have POA although most decision making is left to me. my mom has a living will, DNR/DNI orders, and a POLST. all three of us are medical agents for her. and all of us are executors of her estate.

so far, we are in agreement about pretty much everything. i guess we are as lucky as a family can be, with a mom with probable dementia.


Sun Feb 17, 2013 7:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: hi, i'm new
Welcome! Hugs and prayers for you and your family. Glad to have you join us but sorry you have to be here.

_________________
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 Feb 18, 2013 12:20 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: hi, i'm new
Welcome to the forums. Hopefully you will find many answers and much support here.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Feb 18, 2013 12:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: hi, i'm new
Welcome! Does the ALF where she now resides have a SNF or memory care component? If so, it will probably be easier on all of you if/when she needs to be moved. We were very lucky with my dad - despite his inability to do any ADLs and having LBD, they let him stay in his ALF room until the end. He did go to the memory care unit for meals a few months before he died - there was a bigger ratio of staff to patients, and also he was getting too vocal and inciting other residents to get angry about things in the regular dining room. You may want to ask (if you haven't already) what the criteria are for having to move your LO. My dad went on hospice services about the time they wanted to move him to memory care, so with the extra hospice help, that allowed him to stay in his room, which was a help. He'd been there for over a year so it was familiar to him and a move would probably have made him a lot worse emotionally. Check it out before you HAVE to move her. That way, if you do need to move her, you can have a place all lined up and it won't be a crisis decision. Good luck, stop here often! 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 Feb 18, 2013 6:57 pm
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Joined: Sun Feb 17, 2013 11:41 am
Posts: 12
Post Re: hi, i'm new
good advice. there is a memory care unit, and also a unit that has more intensive nursing care. (my mom refers to these units as "goofytown.")

i spoke to the nurse today about putting her on the waiting lists for both of them. we agreed that she does not need them now but might in the future.


Mon Feb 18, 2013 9:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: hi, i'm new
Dear bjr,
Welcome to the LBDA forums and I am glad someone pointed you in this direction, I am sorry for the need but the support and information you will recieve is great, come often and if you post a question or comment try to stay in area closest your question as you will recieve more answers and suggestions.

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Irene Selak


Mon Feb 18, 2013 9:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: hi, i'm new
Your mom's "goofy town" made me laugh. You have to find some humor amongst all the sadness and frustration! When my dad had to start eating in the memory care unit he'd complain about it and say something like "those little old ladies are perfectly nice in there, but most of them have lost their marbles." Despite his delusional thinking and other issues, he had it together enough to know that he wasn't "as bad off" (his words) as the people who lived in memory care. He'd try to get out of there as fast as he could, which sometimes meant pushing himself out of the wheel chair onto the floor so the CGs would take him back to his room sooner. Sad, but that's the only way he could spend less time there. I wish our LOs didn't have to suffer with this awful disease. 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.


Tue Feb 19, 2013 5:51 pm
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Joined: Sun Feb 24, 2013 12:00 pm
Posts: 7
Location: Anchorage, Alaska
Post Re: hi, i'm new
Hi bjr, glad to meet you. I'm new here too. Even though I'm at LBDA about my husband, I can identify with your experiences, as both my parents had dementia, living until age 92 and 101, and I had POA for my mom. They were in a great facility with all the levels of care. I look forward to getting to know you and to the others here.


Mon Feb 25, 2013 2:03 am
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