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 Adventures are good for LBD folks -- in the Early Stage 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Adventures are good for LBD folks -- in the Early Stage
Yes, Tonya, staying home alone can be an adventure in itself if you rarely do that! It's a nice break from the routine for me when I get my house to myself (even for a few hours!). Do you have someone you can call, though, in case you do need someone to help or keep you company? I'd want to line up a person or two just in case you need someone for some reason.
I'd try to do all the things I ordinarily have every excuse in the world not to do, and as Oprah once said "when you have time all by yourself you can have a bowl of cereal for dinner at 5 pm in your PJs if that's what you feel like doing!" There's something kind of freeing about having a little time to ourselves.
The last time I took my dad for an outing I took him to the Dairy Queen for a milkshake. I wasn't even out of the car ordering it (5 min. from the ALF) when he said he was ready to go back. I told him to hold his horses, that we hadn't gotten the ice cream yet. He got all anxious so my cousin stayed in the car with him while I got everthing, and he insisted on drinking the milkshake on the way back. This was a challenge since he could no longer hold the cup or get the straw in his mouth..... :roll: Thank goodness we didn't have an accident with me trying to drive and hold his milkshake for him at the same time! Lynn

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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 Aug 15, 2011 4:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Adventures are good for LBD folks -- in the Early Stage
It's one thing I appreciate about Derek's SNF being an 'Eden Alternative' facility. Their philosophy is to meet the resident's needs and preferences rather than their own schedule. At first I found it a bit unnerving but the residents are much happier there than in most facilities I've seen.

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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 Aug 15, 2011 5:22 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Adventures are good for LBD folks -- in the Early Stage
Pat, that just makes a lot of sense. Eden--a good goal! It must make the residents a lot happier.

Julianne


Mon Aug 15, 2011 5:36 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Adventures are good for LBD folks -- in the Early Stage
Thanks Lynn...I think there are a couple people I could call....My Dad has PDD but is in the early stage....if I was really in trouble he or his wife might be able to help...or a former student or friend from church could help in a pinch....and I always have my psychologist in an emergency......

Hah! I sit in my pjs all day! lol......But you're right there are things you can do alone that you don't even think of when you're not....I am hoping for a solid night's sleep...my husband doesn't sleep through the night - but then my meds don't let me either so we'll see.......Thanks for your concern and encouragement!

Yeah - the thought of going with my husband was out of the question...I don't really like to be more than about 5 miles away from home right now......I hope once the meds settle down this may change.....we'll see.....never know......Glad you were safe.....

Best,

Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Aug 15, 2011 8:04 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Adventures are good for LBD folks -- in the Early Stage
There's a place half a block from my home that, though I don't think they call themselves an "Eden alternative" sounds very similar. It consists of four or five buildings, each housing six to eight residents. Each building looks very much like an individual house and there is a lot of staff around. I have had Mom on the waiting list there for years. But, as they are small, their openings are few and far between and since Mom is on Medicaid, her chances of getting in there are even worse. But I do like the SNF Mom's at, where most of the care is outstanding and we are deeply involved in Mom's care. It also doesn't hurt that the DOR is married to a guy I work with.

Mom does still like to go out, even if it is hard on her. When asked, she nods her head so enthusiastically she's going to give herself whiplash one day. If she isn't in good shape on that day, we don't even suggest it. That's Lewy - feeling good enough for an outing one day and wanting to be alone the next. Mom is starting to get a bit nervous when I drive on the freeway - not sure if it is the freeway or me that makes her nervous. But I pull off onto side roads and she's fine.

Since Mom has so much trouble talking, I have to rely on my own knowledge of her. I know when she is antsy and feeling like one more minute on the unit will make her explode. Like many of you who are married, Mom and I have lived together much longer than most mother-daughter pairs. Economics, mostly, and the help my sister needed to raise her daughter, brought us all together in one house 25 years ago and Mom and I have shared a home since then. I know her as well as many of you know your spouses. And I know that getting out once in a while helps her get through the days. We'll do it for as long as Mom can handle it. When she can't, it'll be obvious. I expect that it won't be so important to her by then.

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]


Tue Aug 16, 2011 12:51 pm
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