Re: Update on Mom

[Guest guest]

Suzie,

You have been so helpful to me. I'm glad your Mom is doing better.

Take care of yourself.

[Guest guest]

Dear Jan,

Thanks for the update - I am like you in that I still search for

medical miracles, advances, etc.... even though I see the reality in

the distance. I guess it's what keeps us pushing on.

I'm glad to hear things went well with your brother's surgery -

hopefully things will go well for him from now on!

Your analogy is great - we are all on this terrible ride without ever

buying a ticket.... truer words were never spoken. Hang in there -

that's all we can do.

Hugs to you,

Helene

>

> Well, it seems that nothing's changed much. Mom's still eating and

> drinking erratically, has a few lucid moments (or so it would seem

> until you ask her something), and all her vitals are good.

>

> It's been more of a slow downhill slide over the past 10 months.

She

> has lost all ability to walk or even support weight on her legs.

She

> must now be lifted for everything. Incontinence occurs

occasionally,

> but most of the time she complains that she is unable to urinate.

> She's had multiple testings and there is nothing physiologically

> wrong. The problem is the cognitive processes.

>

> I went over on Sunday to take their groceries to them, and she had

a

> large abraded area on her left temple and left cheek. I asked her

> what happened, and she said, " oh, I fell. " I was upset, and asked

> Dad how it happened. He said, " I was just sitting in my chair

> reading the paper, or maybe I was working a word search puzzle, and

> suddenly she fell. " Well, of course, I know what had happened. He

> had fallen asleep in his chair, and she took that opportunity to

get

> up from her recliner and try to get into her wheelchair again. She

> can't comprehend that she can't walk, or even bear weight on her

> legs. She keeps insisting that she's getting stronger.

>

> I can't seem to make Dad understand that she HAS TO BE WATCHED

24/7.

> She is so unpredictable, and has the thought processes now of a

very

> young child. And that's when she's not in Lewyville.

>

> And Dad is becoming a...well, what would you call him?...a

situation

> in his own right. He won't remember to give Mom her meds when my

ex-

> wife isn't there, even when I call and remind him to do it. He was

> diagnosed with depression a few years back, and he plays it to the

> hilt when it suits him. He takes Prozac for depression, but when

> he's wanting to get sympathy, he tells me that he's quit taking

it.

> When Mom came home from the hospital last February, he gave a gun

to

> me, a gun to my brother, and a rifle to my son. He said that it

> wasn't safe to have them there. Now he's asking for his gun back

> from me. Well, this is the man who has threatened to kill himself

> once Mom is gone. How in the hail (yes, I'm in Oklahoma) can I

give

> that gun back to him??? He says he needs it for protection. Mind

> you, my parents live in an older, very settled neighborhood that

has

> never had any crime at all. I talked with my sister about it, and

> she agrees with me. She said, " you know, they have enough drugs in

> that house to overdose themselves. " I said, " well, I don't have to

> enable them to do it. "

>

> I wish I could write something positive, something uplifting,

> something to give myself and other here some hope. I'm just not

> hopeful about much of anything any longer. I read all I can find

> about LBD, I read about advances in medicine that might help, and

> yet, I have to be realistic and continuously remind myself that

with

> LBD, " normal " is redefined daily.

>

> But, on a positive note, my younger brother had his third brain

> surgery to remove a glioblastoma multiformae brain tumor. He had

the

> surgery the first part of this month, and the surgeons are

confident

> that they were able to remove 100% of the tumor. He will undergo

> chemo as a precautionary measure, but the prognosis is good. It

> won't fix what has already been compromised by the tumor

> (prosopagonia, which is an inability to recognize faces; some

hearing

> loss; some cognitive thought processes), but he is getting

healthier

> and hopefully will regain some of the muscle mass he lost. He's

got

> such a wonderfully positive outlook, and still has a wicked sense

of

> humor. I told him it was a good thing he had more brain power than

> most people at the beginning of this.

>

> Anyway, this is just an update, and I guess a way of letting it out

> so that I can deal with it in a (more or less) rational manner.

> We're all on this ride, without even buying the ticket, aren't we?

>

[Guest guest]

I'm sorry to hear that things aren't going so well for your folks, and hope

that it won't be much longer that you'll be able to deal with the legalities

so you can make decisions to help them. The people that need the most help

are usually the ones who don't realize it.

Such GREAT news about your brother, that was wonderful to read .

Thanks for the update, your parents are lucky to have you there for them .

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

----- Original Message -----

> Well, it seems that nothing's changed much. Mom's still eating and

> drinking erratically, has a few lucid moments (or so it would seem

> until you ask her something), and all her vitals are good.

>

> It's been more of a slow downhill slide over the past 10 months. She

> has lost all ability to walk or even support weight on her legs. She

> must now be lifted for everything. Incontinence occurs occasionally,

> but most of the time she complains that she is unable to urinate.

> She's had multiple testings and there is nothing physiologically

> wrong. The problem is the cognitive processes.

>

> I went over on Sunday to take their groceries to them, and she had a

> large abraded area on her left temple and left cheek. I asked her

> what happened, and she said, " oh, I fell. " I was upset, and asked

> Dad how it happened. He said, " I was just sitting in my chair

> reading the paper, or maybe I was working a word search puzzle, and

> suddenly she fell. " Well, of course, I know what had happened. He

> had fallen asleep in his chair, and she took that opportunity to get

> up from her recliner and try to get into her wheelchair again. She

> can't comprehend that she can't walk, or even bear weight on her

> legs. She keeps insisting that she's getting stronger.

>

> I can't seem to make Dad understand that she HAS TO BE WATCHED 24/7.

> She is so unpredictable, and has the thought processes now of a very

> young child. And that's when she's not in Lewyville.

>

> And Dad is becoming a...well, what would you call him?...a situation

> in his own right. He won't remember to give Mom her meds when my ex-

> wife isn't there, even when I call and remind him to do it. He was

> diagnosed with depression a few years back, and he plays it to the

> hilt when it suits him. He takes Prozac for depression, but when

> he's wanting to get sympathy, he tells me that he's quit taking it.

> When Mom came home from the hospital last February, he gave a gun to

> me, a gun to my brother, and a rifle to my son. He said that it

> wasn't safe to have them there. Now he's asking for his gun back

> from me. Well, this is the man who has threatened to kill himself

> once Mom is gone. How in the hail (yes, I'm in Oklahoma) can I give

> that gun back to him??? He says he needs it for protection. Mind

> you, my parents live in an older, very settled neighborhood that has

> never had any crime at all. I talked with my sister about it, and

> she agrees with me. She said, " you know, they have enough drugs in

> that house to overdose themselves. " I said, " well, I don't have to

> enable them to do it. "

>

> I wish I could write something positive, something uplifting,

> something to give myself and other here some hope. I'm just not

> hopeful about much of anything any longer. I read all I can find

> about LBD, I read about advances in medicine that might help, and

> yet, I have to be realistic and continuously remind myself that with

> LBD, " normal " is redefined daily.

>

> But, on a positive note, my younger brother had his third brain

> surgery to remove a glioblastoma multiformae brain tumor. He had the

> surgery the first part of this month, and the surgeons are confident

> that they were able to remove 100% of the tumor. He will undergo

> chemo as a precautionary measure, but the prognosis is good. It

> won't fix what has already been compromised by the tumor

> (prosopagonia, which is an inability to recognize faces; some hearing

> loss; some cognitive thought processes), but he is getting healthier

> and hopefully will regain some of the muscle mass he lost. He's got

> such a wonderfully positive outlook, and still has a wicked sense of

> humor. I told him it was a good thing he had more brain power than

> most people at the beginning of this.

>

> Anyway, this is just an update, and I guess a way of letting it out

> so that I can deal with it in a (more or less) rational manner.

> We're all on this ride, without even buying the ticket, aren't we?

[Guest guest]

I am so terribly sorry Dear Gladys.

Love you dear one,

Imogene

In a message dated 11/4/2008 12:49:10 PM Central Standard Time,

agoramom@... writes:

Oh, this post brought me to beautiful sad tears. The love your father is

for your mother is a love we can all only dream of having and your dream was

so beautiful!

Right now I'm sitting in Panera Bread (free Wi Fi) A few minutes ago, I

embarrassed myself totally by bursting into tears. At the next table sat an

older woman with a cane and that glossed over staring into space look. A

younger woman sat down with her and said " I have your soup, Mom " I just

started to cry because I realized I have no one to call " Mom " anymore and

because I miss my real Mom and my lewy Mom. This is so much harder than I

thought it would be.

Gladys

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[Guest guest]

Helene ~

 

That's true...Dad had kinda given up on feeling useful or needed at his age. 

This has given him something to do.  He doesn't always do it gracefully, but who

of us can be completely unselfish? 

 

My little brother's surgery went well, with the surgeons confident that they

were able to remove 100% of the tumor, and he's undergoing chemo now to zap any

rogue cells.  However, he's not regaining his strength quickly, and still has a

lot of stuff to go through.  He will never recover to his pre-tumor state, but

he's alive.  And for that I'm thankful.  He is my closest sibling in terms of

relationships, and I can't bear to think of life without him.  He has a sweet

and loving wife who feels that she's been blessed for the last 27 years of being

married to him, and I feel that he was blessed with her. 

 

With Mom, I'm a little more pragmatic.  While I want her here forever, I also

know that this illness is taking her from us in bits and pieces and sometimes

big huge chomps.  As long as she's doing as well as she is, I'm content.  I am

just not ready for what's coming down the road.

Jannis

Redefining Normal Every Day

[Guest guest]

Janis, so glad the surgery on your brother went well! I was wondering how he was

doing and could kick myself for not asking in my previous post. I hope and pray

for a complete recovery.

More hugs,

Raquel

[Guest guest]

Gladys, my heart goes out to you. A situation like the one you

described brings everything to the forefront at once. I believe that

we, as caregivers, can feel the loss even more intensely at times. A

woman in one of our support groups spoke about the loss of her Mom in

different ways. She said it was tactile. She took care of her the

way she cared for her infant. She missed her smell, her touch, the

intimacy. I can feel that all for you. Wishing you smiles of

wonderful times with her, Norma

>

> Oh, this post brought me to beautiful sad tears. The love your

father is

> for your mother is a love we can all only dream of having and your

dream was

> so beautiful!

>

> Right now I'm sitting in Panera Bread (free Wi Fi) A few minutes

ago, I

> embarrassed myself totally by bursting into tears. At the next

table sat an

> older woman with a cane and that glossed over staring into space

look. A

> younger woman sat down with her and said " I have your soup, Mom " I

just

> started to cry because I realized I have no one to call " Mom "

anymore and

> because I miss my real Mom and my lewy Mom. This is so much harder

than I

> thought it would be.

>

> Gladys

>

> -- Update on Mom

>

> Well, things continue as normal...as we redefine normal daily.

>

> My son and I took groceries to Mom and Dad yesterday afternoon, and

> Mom was sitting in her recliner. She was relatively alert and

> conversant, but it was showtime, I guess. In about 5 minutes of

> talking to her and to Dad, I noticed the staring off into the

> distance and a smile on her face. She then leaned toward me and

> took my hand, and she said, " Jan, if you go to Glory Land tonight,

> will you take me with you? " I told her I didn't plan to go to Glory

> Land last night, as I had too many things to do. She looked very

> disappointed, and shut down again.

>

> She's insisting on wearing all her jewelry and a white dress every

> day. She wants to be ready to go, and thinks she has to be dressed

> appropriately.

>

> I guess if I can't go to Glory Land in a pair of blue jeans and a t-

> shirt, I'm going to be denied admittance...*LOL*

>

> Her caretaking is wearing on Dad so badly. He's going to be 85

years

> old in January, and still is picking her up and putting her in a

> wheelchair, in her recliner, in her hospital bed in the living room,

> and in their bed. They are still sleeping together because there is

> no one there during the nighttime. She outweighs him by at least 20

> pounds, and she can't do a thing to assist. He feels that his time

> on earth is to be spent taking care of her...that's his mission to

> perform.

>

> I pray for him and for her without ceasing. I know that when she

> takes her final ride, Dad will follow because he will just give up.

>

> I had a dream the other night that was both disturbing and at the

> same time was reassuring. I dreamed that Mom had died, and we were

> all in the house. I stepped out of the room for a minute, and when

I

> went back in, she was gone. I asked where she was, and my sister

> said " she's outside playing with the grandkids. " I looked out, and

> there she was...young and vibrant and beautiful. I looked around

and

> realized that my brother with the brain tumor was not there. I

asked

> where he was, and they said, " he's out in the garage working on his

> Volkswagen. " I was so confused, and I went out into the garage, and

> he was wearing his blue jeans and a t-shirt and laughing and joking

> and looked like he did so long ago...so healthy and happy. I

> realized that I was being told that although they were gone, they

> were still with us. I'm not ready to lose either one of them, but

> I'm not allowed to pick and choose the time, am I?

>

>

> ------------------------------------

>

> Welcome to LBDcaregivers.

>

>