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]

Arlinda, I know it is hard. But try to think in terms of what your dad

would want for you, rather than what (when he was healthier and LBD was the

furthest thing from any of your minds) he would want. Because, of course,

as your father he would be unlikely want you to be second guessing yourself

now. In all probability, you were his primary concern and he would not

want you doing this to yourself.

That is not to say that I didn't second guess myself constantly when my mom

was in a nursing home. I did. But I know my mom well enough to know that

she would be impatient with me for worrying so much.

I also get the guilts, knowing now what my mom and grandparents went

through in caregiving, that I wasn't a better grandchild. Three of my

grandparents lived past 65 and they all had some form of dementia. I was

between 15 and 35 during those years. I was horrible! I avoided visiting

nursing homes and I complained about smells and behaviors. At least, with

the last grandparent, I had learned to force myself to visit her at the

nursing home, but never on my own. And I loved all of my grandparents.

And I never considered what Mom was going through as caregiver. Through

my caregiving experience with Mom's needs these past years, I got a glimpse

of what my grandmother had to live with in caregiving for my grandfather.

But NOT ONE OF THEM would want me to spend a lot of time worrying about

what could have been or what I could have done. I know they loved me and I

know they would want me to move forward knowing that, regardless of would

have/could have guilts. Especially not Mom. And neither would your dad.

The nursing homes my grandparents lived in were Bedlam in comparison to

most nursing homes today. They drugged patients just to keep them docile.

Visiting hours were strict. Records were not open, even to caregivers.

The worst nursing home today is better than the best 30 years ago.

Some things that need to be recognized when someone you love is placed in a

nursing home:

- *Medicare inspects and rates all licensed nursing homes. Suspect

abuses should be reported to them (and the nursing home) as soon as

possible;*

- *The staff at nursing homes cannot give one on one care. If that is

what you are looking for, you need to hire personal aides for 24x7 care

exclusively for your loved one. When an aide has 4,6,8 patients to care

for, not everyone will get immediate or perfect care. *

- *It is amazing that the people who work in nursing homes, who are

often abused physically, verbally and emotionally by patients, actually

come back to work each day. To me, they are heros.*

- *It is critical to be as directly involved in your LO's care as is

possible. I, or one of my sisters, was with Mom every evening and, took

her to the toilet (which she invariably needed when the staff was busy

getting everyone to dinner or feeding patients), and sat with her 24x7 (in

shifts) when she was ill. (Yes, we had to sign a release of responsibility

for the nursing home for the times we handled caregiving activities, but it

was worth it.)*

- *I was in constant communication with the nursing home administration

with observations, suggestions and praise of individual staff members who

had gone the extra mile. (It did help that the asst DON is the wife of a

coworker and friend.)*

- *Bringing suit against a nursing home should be the exception, with

provable abuse. It is not a matter of whether the care they gave your dad

is equal to what you feel you could have given him. No one could have done

that.*

You may have a real grievance against the nursing home. But think as

objectively as possible about this.

Assuming the decisions you made were motivated by love for your dad and for

your mom, you do not have a grievance against yourself. All anyone does in

these circumstances is the best they can. Yes, we all make mistakes. So

do parents when raising their children. Your dad probably second guessed

himself when raising you. But in the end all any of you could do was the

best you knew how. Try to let it go and move forward.

And, yes, grief counseling can help. You do need to find the right

counselor or group. If the first one doesn't help, there are others.

Think in terms of the future and do what you need to get there.

Best wishes,

Kate

> **

>

>

> 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

>

>

>

--

Kate Knapp, OIT

University of Minnesota

You were born with certain gifts and talents.

In kindergarten you were taught to share.

The world needs all of the gifts it can get.

Don’t be shy.