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?

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

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!

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 ?

Welcome Stella, you are among kindred spirits! Lynn

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

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.

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.

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

Stella, that was very touching.

It's a meaningful poem.

Stella,
That is a beautiful poem! Well done and sorry to say welcome!
Sharon E.

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

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." 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