Re: Abby Re: Coyote-- conversation with my Dad in whole...

[Guest guest]

Dear Coyote:

I feel so bad for you. It is difficult to try to explain to the LBD person

what is wrong. I have lots of questions, though.

Your dad didin't know there was something wrong? My dad knew way before we

did. We dismissed a lot of his symptoms. He sat in a deep depression thinking

about where his brain was going. Realizing he could not do the things he

used to do.

Your dad walks out the door in the winter snow and ice? How can he do that?

Doesnt' he have problems walking? Is he shuffling? My dad used to go for

walks around the block every morning. He took his cane with him, but mostly

dragged it because he forgot to use it. He got lost a few times going around

the

block and decided not to do it any more, but that was in his last few months.

He thought it was very important to keep up with his exercise routine.

The conversation is very touching and sad. I ams sure he could not imagine

leaving your mom. They become so much part of each other as the years pass. I

wrote down everything that happened to us as well, just to keep a record of

how things went, so I could recall it later. It is mostly in my old posts and

I haven't had the time or inclination to re-read them, but I know they are

there.

I am sending you my support and my prayers. Love and hugs,

Josie

[Guest guest]

Coyote

my heart is breaking right along with you. The truth is you ARE doing all

that you can do to make it safe for your dad. Of course it always has to be

the hard way...the flu epidemic when you get him to agree to go

visit...these things happened over and over when I had mom in the retirement

home. It was never simple like it should have been. Mistakes got made and

I was constantly doubting myself about whether it was the right decision.

Then when the doctor said mom could try it at home again, I was terrified

about that decision too. And that never exactly went smoothly either. First

caregiver left after only 4 days, mom refused to go back, wasn't taking

meds, my sister wasn't talking to her, she wouldn't bathe, wouldn't

eat...finally I just up and hired someone else. And things improved but I

lost many nights of sleep and walked around with that " awful ache in the

throat " (mine was in my stomach--felt nauseous) for days on end, but I got

through it, and you will too. You have us and you just keep on writing

because it helps, and we will do our part to hold you up when you need a

shoulder to cry on.

Kath

Abby Re: Coyote-- conversation with my Dad in

whole...

> Thank you Abby. Yes, it absolutely broke my heart to have to tell my

> Dad this stuff, but how could I NOT tell him? To see his eyes well

> up like that, that was the worst....actually, I wrote down the

> entire conversation:

>

> Mom: Jim, I thought you should know...um..cuz people are going to be

> coming around, and phone calls going back and forth etc....I have

> had to look into having you stay in a nursing home.

>

> Dad: Why? (reaches out and holds my Mom's hand, eyes start to well

> up)

>

> Mom: Well, I just can't take care of you anymore. (long pause, Dad

> says nothing..) I'm sorry.....(Mom's voice breaks and I feel like I

> have to step in and rescue her)

>

> Me: Dad, do you know that you have an illness? Do you know that

> something is wrong?

>

> Dad: No. I didnt know....

>

> Me: You have a disease, its called Lewy Body Disease. It's sort of

> like Alzheimer's, like its in your brain...

>

> Dad: (kinda sadly) Oh. I have that disease eh?

>

> Me: Yes. We wouldnt even consider putting you in a home for no

> reason...We want to get you into a nursing home so that you'll be

> safe.

>

> Dad: Safe from what? (looks at Mom, baffled)

>

> Me: Well, you sort of wander now...it could be dangerous.

>

> Dad: (nervously laughs, kinda hugs my Mom) Have I ever wandered away

> from you??

>

> Mom: Yes.

>

> Dad: Really? Where do I go?

>

> Mom: We dont know...you go out the door and you dont know where you

> are going...

>

> Dad walks over to the kitchen table and sits.

>

> Me: Hey Mom, why dont you call the Nursing home and see if we can

> take Dad just to see it?

>

> Mom: Jim, would you like that? To go see it?

>

> Dad: Where is it?

>

> Mom: In Hagersville.

>

> Dad: where is that?

>

> Mom: Not far.

>

> Dad: oh ok...we can go just to see it. (as if " dont be tryin to

> LEAVE me there! " )

>

> Sorry this got long....but I wrote it down pretty much verbatim..and

> I think it might make me feel better to share it...maybe....

> We ended up not being able to see the home because of a flu epidemic

> there...so everything is back on hold now.....

>

> I hope the home will let me take Endear to see Dad sometimes.

> ok..gonna start to cry again.....you know that awful ache you get in

> your throat right before you LOSE it?? I hate LBD too! And dog

> cancer.

>

> Coyote

>

>

>

>

>

>

> > Bittersweet stories....man have I heard a lot of them since LBD

> has

> > come into my life.

> >

> > Your story of how your dad held onto your mom and asked if he

> wanders

> > away from her really strikes a spot for me. It sounds like he has

> so

> > much love for her and can't ever imagine that he would willingly

> > leave her. My dad is like that. He adores my mom. I think part

> of

> > the reason why he is so miserable in the nh is due to the fact

> that

> > my mom is home alone so often. He worries about her all the time

> and

> > constantly asks the nurses to phone home and check on her. Brings

> > tears to my eyes...

> >

> > How it must have hurt to tell him that this other person, this LBD

> > controlled semi-person, wanders and does things that are so

> foreign

> > to who your dad is. I'm so sorry that you had to do that and that

> > your dad had to hear it and that the time has come for you too to

> > consider a nh for your father.

> >

> > Sorry, sorry, sorry.... I hate LBD!!!!

> >

> > Hang in there pal. I'm sending you support and strength. Hope it

> > makes its way to you..

> >

> > Abby

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Coyote,

I just read the conversation with your Dad. I am just crying my eyes out. I

know how you feel about this, and it just must be so hard. I wish I knew

something to say to make it all better. Please know you are so loved here, and

you are such a wonderful daughter. My thoughts are with you and your Mom and

Dad.

Much love,

Piper

[Guest guest]

Coyote,

Sending you a huge hug.

Courage

Abby Re: Coyote-- conversation with my Dad in

whole...

>Thank you Abby. Yes, it absolutely broke my heart to have to tell my

>Dad this stuff, but how could I NOT tell him? To see his eyes well

>up like that, that was the worst....actually, I wrote down the

>entire conversation:

>

>Mom: Jim, I thought you should know...um..cuz people are going to be

>coming around, and phone calls going back and forth etc....I have

>had to look into having you stay in a nursing home.

>

>Dad: Why? (reaches out and holds my Mom's hand, eyes start to well

>up)

>

>Mom: Well, I just can't take care of you anymore. (long pause, Dad

>says nothing..) I'm sorry.....(Mom's voice breaks and I feel like I

>have to step in and rescue her)

>

>Me: Dad, do you know that you have an illness? Do you know that

>something is wrong?

>

>Dad: No. I didnt know....

>

>Me: You have a disease, its called Lewy Body Disease. It's sort of

>like Alzheimer's, like its in your brain...

>

>Dad: (kinda sadly) Oh. I have that disease eh?

>

>Me: Yes. We wouldnt even consider putting you in a home for no

>reason...We want to get you into a nursing home so that you'll be

>safe.

>

>Dad: Safe from what? (looks at Mom, baffled)

>

>Me: Well, you sort of wander now...it could be dangerous.

>

>Dad: (nervously laughs, kinda hugs my Mom) Have I ever wandered away

>from you??

>

>Mom: Yes.

>

>Dad: Really? Where do I go?

>

>Mom: We dont know...you go out the door and you dont know where you

>are going...

>

>Dad walks over to the kitchen table and sits.

>

>Me: Hey Mom, why dont you call the Nursing home and see if we can

>take Dad just to see it?

>

>Mom: Jim, would you like that? To go see it?

>

>Dad: Where is it?

>

>Mom: In Hagersville.

>

>Dad: where is that?

>

>Mom: Not far.

>

>Dad: oh ok...we can go just to see it. (as if " dont be tryin to

>LEAVE me there! " )

>

>Sorry this got long....but I wrote it down pretty much verbatim..and

>I think it might make me feel better to share it...maybe....

>We ended up not being able to see the home because of a flu epidemic

>there...so everything is back on hold now.....

>

>I hope the home will let me take Endear to see Dad sometimes.

>ok..gonna start to cry again.....you know that awful ache you get in

>your throat right before you LOSE it?? I hate LBD too! And dog

>cancer.

>

>Coyote

>

>

>

>

>

>

>> Bittersweet stories....man have I heard a lot of them since LBD

>has

>> come into my life.

>>

>> Your story of how your dad held onto your mom and asked if he

>wanders

>> away from her really strikes a spot for me. It sounds like he has

>so

>> much love for her and can't ever imagine that he would willingly

>> leave her. My dad is like that. He adores my mom. I think part

>of

>> the reason why he is so miserable in the nh is due to the fact

>that

>> my mom is home alone so often. He worries about her all the time

>and

>> constantly asks the nurses to phone home and check on her. Brings

>> tears to my eyes...

>>

>> How it must have hurt to tell him that this other person, this LBD

>> controlled semi-person, wanders and does things that are so

>foreign

>> to who your dad is. I'm so sorry that you had to do that and that

>> your dad had to hear it and that the time has come for you too to

>> consider a nh for your father.

>>

>> Sorry, sorry, sorry.... I hate LBD!!!!

>>

>> Hang in there pal. I'm sending you support and strength. Hope it

>> makes its way to you..

>>

>> Abby

>

>

>

>Welcome to LBDcaregivers.

>

>

>

[Guest guest]

,

I did the Alzheimers Safe Return too. And I got both the patient and

the caregivers bracelet. And I just put ours on at the same time. It

always scared me that either I would be somewhere without her or with

her and they would not know I had a problem somewhere else.

She did not know why I was putting her bracelet on, but as long as I was

going to have one just like it she was ok.

Donna