Re: Introduction/NYC LBDcaregivers?

[Guest guest]

Welcome to the board! You're lucky Arlinda! You could join NYC's LBD group by

Norma Loeb -- who is also the latest LBDA Volunteer of the Year!

http://www.lbda.org/content/family-caregiver-named-lbda-volunteer-year

Here's details of the group:

New York Metro Area Support Group

When: Second Tuesday of every month, 12:30 p.m. – 2:00 p.m.

Who: LBD caregivers.

Location: Manhattan; call for location.

Address: Manhattan; call for location. Manhattan; call for location., NY 10018

Contact:

Norma Loeb

normal@...

http://www.lbda.org/content/local-lbd-support-groups

>

> Hi All,

>

> I'm relatively new to this group....I only found it a few weeks before my dad

passed away (which was Feb 7th). At times I get panicky because I feel I found

this group too late. I feel like there is so much advice and support here that

we (my family and esp my dad) could have used when he was still here. I feel

like we made a lot of mistakes along the way and in the end it's not something

we can go back and fix.

>

> But then there are times I feel okay because reading all the advice and

support you all give each other, makes me feel comforted to know that my dad and

our family weren't alone in this terrible disease. I know I'm not explaining

myself very well, and I've been waiting to post until I came up with the right

words. However, all in all, I'm not really handling my father's passing that

well, and tonight is a bad night (most nights are bad...I guess because there's

less distractions around). I feel like I didn't do enough to help him, and I

wasn't there enough for him. He was in a nursing home and I wish so bad that we

would have been able to figure out a way that we didn't have to send him there

because in the end, I believe that contributed to his rapid decline. Right now

we are in the process of having a lawyer look at his medical records and see if

we have a case against the nursing home..so I may need some help from you guys

in the near future.

>

> Right now I'm wondering if there are any groups that meet up in New York City?

I think I've seen some people mention that they meet up in other cities...so I

was just wondering about here. Even though I have never posted before, and I

only recently found this group, (and my dad is not here), I still feel a

connection with you all, and if anyone meets up in this area, I would love to

join you one of these times.

>

> Also, thanks for reading because again, I know I'm not explaining myself very

well right now...

>

> Arlinda

>

[Guest guest]

Dear Arlinda - I am very sorry to hear of your Dad's passing. My sympathy goes

out to you and your family at this very difficult time. In addition to being a

caregiver, I am the facilitator of the New York LBD support group and would be

happy to speak with you. Please know that most of us can understand the

frustration you are feeling since, at one time, we felt the same way you are

feeling--while our loved ones were alive. Most of us have learned the hard

way--through trial and error--on what is best to do for someone with LBD. It's

rarely easy and can be heart-breaking. I have no doubt you did everything you

could for your Dad and that his being in a nursing home was the only alternative

for you, as it is for so many. If I had to pick one feeling that caregivers

experience the most, it is GUILT. If we do 25 things in one day to help the

person with LBD, it never feels like enough because there's so much we can't do

to help them. We'd be happy to have you in our group but I do think, at this

point, it would be of greater help if you could join a group, as Robin suggested

for grief support. Our LBD group would be focusing on what to do to help LBD

loved ones on a daily basis and taking care of ourselves. I will send you a

note to your personal email so that we can speak by phone if you'd like. I wish

you very happy memories of your Dad. Please try to keep these in the forefront

of your thoughts and know that he is free and peaceful now. In peace, Norma