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 New Kid on the Block 
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Joined: Tue Mar 29, 2011 3:19 pm
Posts: 6
Post New Kid on the Block
Good morning. I introduced myself a couple of weeks ago by way of asking a question about mirtazapine, but neglected to give our story. My husband is 79 and was diagnosed with LBD last summer. He has had dementia for a few years but had been unwilling to see a doctor...until the hallucinations came on strong and I sort of tricked him into getting a wellness checkup (told him our health insurance required it once a year); I had no idea what was going on with his behavior. Now I do and I feel somewhat relieved that there is a name for his condition. And a forum! The hardest things for him are the loss of the ability to communicate his thoughts---they get so frazzed and incoherent; also he can make little to no sense of what he reads or of what others say to him (though he tends to cover that up). I'm doing okay (except he follows me about alllll day long). Sometimes, though, I have a black evening where I just want to escape outside and run around in circles. Been there?


Fri Apr 22, 2011 10:59 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: New Kid on the Block
Oh, yes. The feeling of just wanting to run and never stop has been a fairly constant companion the past several months. I think it was the hallmark of my anxiety over what was happening to us...especially when it all started to get really bad. That old 'fight or flight' thing going on.

My husband is in an Adult Family Home now after a 12 day stay in the VA hospital. It was a decision I never wanted to make and waited too long to make. He is doing well in the AFH, although he is their most challenging client.

Take care, and welcome. Nan


Fri Apr 22, 2011 11:07 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Kid on the Block
Yes, Stella, wanting to go outside and run and run and run. One day I did that for about ten minutes just to release some built-up tension. Lewy will put you through the mill, that's for sure. Glad you are here but sorry you have to be. God bless!

_________________
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 Apr 22, 2011 11:28 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Kid on the Block
Yes Stella,
I think many of us have been there or are still there. I know the following around drove me crazy too but like everything else that will pass and move onto something else! There are a couple of spousal support groups if you are interested ?

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Irene Selak


Fri Apr 22, 2011 11:45 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3356
Location: Vermont
Post Re: New Kid on the Block
Welcome Stella, you are among kindred spirits! 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.


Fri Apr 22, 2011 11:50 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Kid on the Block
Stella,

I'll have to suggest the "insurance requires a yearly exam" tactic to others! Great idea!

For your sanity, you should get daily respite -- even if it's walking around the block.

Robin


Fri Apr 22, 2011 1:04 pm
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Joined: Tue Mar 29, 2011 3:19 pm
Posts: 6
Post Re: New Kid on the Block
Thanks, everybody. Beyond measure.

HOUNDED

I barked
at my husband.

He looked at me,
his tail drooping,
eyes confused, wary,
as if he’d done something,
if not wrong,
at least not right,
not Kosher.

I can see my face
as I barked,
brows gathered,
my voice impatient,
brusque.

What kind of cur,
or *, would bark
at a man
whose highest wish
is simply to be useful,
helpful;
to be noticed,
even though,
as time trickles through
his fingers,
he seldom knows
what he’s about,
or who’s on first,
or where he buried
his bone.


Sat Apr 23, 2011 8:05 am
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Joined: Thu Apr 21, 2011 8:39 pm
Posts: 10
Post Re: New Kid on the Block
Quote:
I'm doing okay (except he follows me about alllll day long).


Whatever it is, it can usually wait. Being in the moment is very important to our LOs. Being there with them is important to us.


Sat Apr 23, 2011 8:28 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New Kid on the Block
Stella47, Hounded, sooo true and very well said. I try not to raise my voice but I know Frank must pick up on the tone. BUT it's all day, every day and one tends to get weary, but we all keep trying.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Apr 23, 2011 9:25 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Kid on the Block
Stella, that was very touching.

_________________
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.


Sat Apr 23, 2011 10:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Kid on the Block
It's a meaningful poem.


Sat Apr 23, 2011 1:14 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: New Kid on the Block
Stella,
That is a beautiful poem! Well done and sorry to say welcome!
Sharon E.


Sat Apr 23, 2011 2:04 pm
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Re: New Kid on the Block
Welcome Stella: I'm fairly new to this forum, but have observed from a distance for a long time. This is a "safe place to fall, or a safe haven in the storm" when you're at the end of your rope. You will find not only great information, but kind and wonderful supporters. Staying patient is also the hardest thing for me through all this. I feel so badly when I have been short or patronizing with my husband. Your poem really hit home. It's really the illness, not the person, that angers us. I hope you can take some time for yourself each day that is enjoyable and calming.
Estelle


Wed Apr 27, 2011 9:53 pm
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: New Kid on the Block
Hi Stella,
I'm relatively new too. I certainly understand about the following--even to the bathroom. I'll tell Tom where I'm going and minutes later he'll be peeking around the corner. When I come out he (and the dog) will be waiting right there. I call him my "love stalker." :lol: You're right, some days it's overwhelming, especially if you're tired. Just give him some extra hugs and kisses when you tuck him in, take a deep breath, let everything go and pat yourself on the back for making it thru another day. We all live it ONE DAY AT A TIME!!
Right there with ya, Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Thu Apr 28, 2011 10:55 am
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