Re: Kudos to those who do 24/7 Caregiving

[Guest guest]

Amen, , Amen!

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02

No dx other than mine.

Kudos to those who do 24/7 Caregiving

My thought for today is that I want to let those of you know who do

24/7 caregiving that I feel that what you do is wonderful for your

LOs with LBD.

I bet, if there was a study, between 24/7 care for those with LBD and

nursing home care for those with LBD -- that the 24/7 care would rank

better. And I don't think the same drastic results would happen with

AD....

As you know, my mother is in a NH. From what I've seen with my mother

in a NH, I have to say that for those of you who are able to provide

24/7 caregiving at home I feel your LOs do better. Why do I say this?

Because every visit with my mom I see a huge difference from the time

I arrive to when I leave. Most times - when I arrive and she's in

that dining room /common room with the rest of the residents, I see

her withdrawn into herself. The moment I take her out of that

situation and into her bedroom with the door closed or into

the " Grande Room " or " Sun Room " (which are visiting rooms in the NH)

I see a change in her. And I don't think it's just that she's with

me -- I truly feel that getting her out of the chaos of a community

room helps.

I think most of us will agree that those with LBD are different from

other dementia patients. That they're 'there' -- just lost in a fog

of sorts. And the situation that they're in when with others with

dementia is scary for them.

I wish my life situation was different that I would be able to care

for my mother at home. But for a number of reasons - it isn't

something that is going to happen. I'm at work right now wishing I

was with her, helping her right now.

My mother is OK in the Nursing Home - but I sincerely feel she would

be better than she is now if she was cared for in a home setting.

I just want you all to know that your efforts (in my opinion) are not

in vane. That you are truly helping your LO - in more ways than you

can even know. I fully understand that some of you can't keep your LO

at home forever, but you should pat yourself on the back for all the

time you were able to provide for your LO. That your LO is probably

better than he/she would have been today, had you not provide all the

care that you did.

So - kudos to all of you who are able to provide or have provided

24/7 care for your LOs!

[Guest guest]

,

Thank you!

Every time Mom has an episode and I speak with my brother in New York about it,

his only comment is " put her in a nursing home. " He feels that no one should

take abuse for even a second and if she isn't acting sane I should put her away

immediately. He even suggested that I call the police and have them haul her

out.... " that will teach her to behave. " He has no clue! He fails to understand

that for the most part she is sane. She is having trouble remembering things,

forgets how to operate the remote control for the tv, etc. All in all, she is

functioning, she bathes herself, dresses herself, is able to walk with a cane,

goes outside with my supervision, reads the newspaper, tries to carry on a

conversation.....why would I put her in a nursing home? I intend to keep my

mother home and comfortable for as long as I possibly can. I believe that once

people go into a nursing home they begin to decline. For the short time that

she was in a nursing home after her hospitalization she was struck by another

patient, ignored, yelled at by another patient, had her clothing stolen by

another patient....she did not need that. That was when I took her to New York

for a second opinion and we were told of the LBD. I had never heard of it.

Boy, am I learning!

I agree with you, if at all possible keep your loved one at home. If you can't,

then visit often and let them know that you are there and love them.

D

>

>

> Date: 2006/07/03 Mon PM 12:11:44 EDT

> To: LBDcaregivers

> Subject: Kudos to those who do 24/7 Caregiving

>

> My thought for today is that I want to let those of you know who do

> 24/7 caregiving that I feel that what you do is wonderful for your

> LOs with LBD.

>

> I bet, if there was a study, between 24/7 care for those with LBD and

> nursing home care for those with LBD -- that the 24/7 care would rank

> better. And I don't think the same drastic results would happen with

> AD....

>

> As you know, my mother is in a NH. From what I've seen with my mother

> in a NH, I have to say that for those of you who are able to provide

> 24/7 caregiving at home I feel your LOs do better. Why do I say this?

> Because every visit with my mom I see a huge difference from the time

> I arrive to when I leave. Most times - when I arrive and she's in

> that dining room /common room with the rest of the residents, I see

> her withdrawn into herself. The moment I take her out of that

> situation and into her bedroom with the door closed or into

> the " Grande Room " or " Sun Room " (which are visiting rooms in the NH)

> I see a change in her. And I don't think it's just that she's with

> me -- I truly feel that getting her out of the chaos of a community

> room helps.

>

> I think most of us will agree that those with LBD are different from

> other dementia patients. That they're 'there' -- just lost in a fog

> of sorts. And the situation that they're in when with others with

> dementia is scary for them.

>

> I wish my life situation was different that I would be able to care

> for my mother at home. But for a number of reasons - it isn't

> something that is going to happen. I'm at work right now wishing I

> was with her, helping her right now.

>

> My mother is OK in the Nursing Home - but I sincerely feel she would

> be better than she is now if she was cared for in a home setting.

>

> I just want you all to know that your efforts (in my opinion) are not

> in vane. That you are truly helping your LO - in more ways than you

> can even know. I fully understand that some of you can't keep your LO

> at home forever, but you should pat yourself on the back for all the

> time you were able to provide for your LO. That your LO is probably

> better than he/she would have been today, had you not provide all the

> care that you did.

>

> So - kudos to all of you who are able to provide or have provided

> 24/7 care for your LOs!

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I totally agree! When we would go to see my MIL in The NH the first

thing she would ask us to do is to get her out of the group setting.

All the people and the noise would drive her crazy. As I spoke to her

she would gradually come back to a higher functioning level.

I often think about taking a leave from my job to say home with her

but I don't think I could care for her at this stage. She can no

longer stand to transport and is mainly bedridden. She has trouble

swallowing and is totally incontinent. She no longer remembers me or

her sons. It makes me so sad when my MIL cries because she never

thought her life would end like this.

I don't know how some of you do it. God bless all of you that take

care of your love ones at home and to all the rest of us who devote

so much time trying to make their quality of life for our LO somewhat

better. We all are just trying to do the best we can with a very

difficult situation.

Take care,

Maureen

>

> My thought for today is that I want to let those of you know who do

> 24/7 caregiving that I feel that what you do is wonderful for your

> LOs with LBD.

>

> I bet, if there was a study, between 24/7 care for those with LBD

and

> nursing home care for those with LBD -- that the 24/7 care would

rank

> better. And I don't think the same drastic results would happen

with

> AD....

>

> As you know, my mother is in a NH. From what I've seen with my

mother

> in a NH, I have to say that for those of you who are able to

provide

> 24/7 caregiving at home I feel your LOs do better. Why do I say

this?

> Because every visit with my mom I see a huge difference from the

time

> I arrive to when I leave. Most times - when I arrive and she's in

> that dining room /common room with the rest of the residents, I see

> her withdrawn into herself. The moment I take her out of that

> situation and into her bedroom with the door closed or into

> the " Grande Room " or " Sun Room " (which are visiting rooms in the

NH)

> I see a change in her. And I don't think it's just that she's with

> me -- I truly feel that getting her out of the chaos of a community

> room helps.

>

> I think most of us will agree that those with LBD are different

from

> other dementia patients. That they're 'there' -- just lost in a fog

> of sorts. And the situation that they're in when with others with

> dementia is scary for them.

>

> I wish my life situation was different that I would be able to care

> for my mother at home. But for a number of reasons - it isn't

> something that is going to happen. I'm at work right now wishing I

> was with her, helping her right now.

>

> My mother is OK in the Nursing Home - but I sincerely feel she

would

> be better than she is now if she was cared for in a home setting.

>

> I just want you all to know that your efforts (in my opinion) are

not

> in vane. That you are truly helping your LO - in more ways than you

> can even know. I fully understand that some of you can't keep your

LO

> at home forever, but you should pat yourself on the back for all

the

> time you were able to provide for your LO. That your LO is probably

> better than he/she would have been today, had you not provide all

the

> care that you did.

>

> So - kudos to all of you who are able to provide or have provided

> 24/7 care for your LOs!

>

>

>

[Guest guest]

Donna,

I am so sorry. I am sure you did what you thought was the best for him at the

time.

When my brother does speak with her, which is not often, he hears a mother who

is almost the same mother he knew when she was ok. He has not heard her when

she is having an episode, so he doesn't understand how it happens. I can see it

coming sometimes several days before it happens. I have found that there is

almost no way to avoid it. Her doctor has helped me to learn to adjust

medication so that the episodes are less severe and that is what I do. I also

pray a lot!

I am determined to keep her home as long as possible. Thank you so much for

your concern.

D

>

> From: donna@...

> Date: 2006/07/03 Mon PM 12:55:49 EDT

> To: LBDcaregivers

> Subject: Re: Kudos to those who do 24/7 Caregiving

>

> Quoting havanese1@...:

>

> > ,

> >

> > Thank you!

> >

> > Every time Mom has an episode and I speak with my brother in New

> > York about it, his only comment is " put her in a nursing home. " He

> > feels that no one should take abuse for even a second and if she

> > isn't acting sane I should put her away immediately. He even

> > suggested that I call the police and have them haul her out.... " that

> > will teach her to behave. "

>

> I totally agree with you - the only reason they " behave " in a NH

> setting is cause they keep them drugged up to the point they don't

> even know night from day.

>

> We had my Dad home - he went into hospital for pneumonia and they

> suggested rehab/nh to see how we could all adjust - that we couldn't

> manage him at home - well that was the beginning of the end. The

> Haldol did him in !

>

> Donna

>

>

>

[Guest guest]

My mother is easily distractable (I think part of LBD) and I can only

imagine how my mom suffers in the dining room/common room as someone

easily distractable with all of those numerous distractions - from

the other residents, to the aides, to some whining/yelling, to the

TV, etc. Now that mom is on hospice and a volunteer will be visiting

weekly - I've made sure that they know when they visit to get her out

of the common room and into a quiet setting. If all visitors did

this - and my mom luckily has many - than she will benefit from it.

My aunt told me that one day when she went to visit that mom was in

tears when she showed up -- she was probably thinking " GET ME OUT OF

HERE " - (not so much of the nursing home in general, but the room

with all the chaos) - that's one of the reasons I feel at-home care

is best for those with LBD. If I'm correct, and all of those with LBD

has the " easily distractability " symptom -- then they all can't

function when in a room with all other residents. When they are cared

for at home - that emotional distress is rarely there...

I, too, think of what would I do if I could bring home my mother. My

sister had requested early on in the disease to have mom live with

her - this was when my mother was functioning pretty well and she

refused the offer. She didn't want to live with my sister. If I were

to do it, I'm in a teeny tiny condo with my SO and cat - I can't see

that it would work just in the setting itself. Even the bathroom

isn't functioning for someone who is handicapped (which is what my

mother is now) - the bathroom is tiny and the shower is granite (it's

an odd shower) - there's no way I could even try to provide a

bath/shower for my mother in there... And I work at least 50 hours

per week. Even with a FT caregiver in the home - uh. where is

everybody going to sleep? It just isn't feasable. (then I start

thinking irrationally - OK - sell the condo, buy a house, bring home

mom, SO, cat, FT caregiver, continue to work...) And my sister

couldn't have my mother in her home either - even with the big house.

Both parents has to work there's no getting around it. Honestly, my

mother would hate that I would even consider that - she always

insisted to me on a personal level (this was when she was still able

to communicate) that she does not want her kids to care for her.

Looking back that is why my mother probably refused to move in with

my sister... I think she's OK with living in a NH overall. I just

hate to see her like that... And as long as she gets us over there to

watch them like a hawk and to spend quality time with her out of the

common areas, she'll be OK.

And bottom line - I don't think I have the inner strength needed to

care for my mother in her situation. Maybe I would surprise myself,

but considering my mother is immobile on her own, I don't think I can

do it. The baths/showers, the toileting, the dressing, etc. And to be

perfectly honest with y'all - when mom was really bad after the

biopsy and she was pocketing food - I almost puked just trying to

clean out the food out of her mouth. The aide laughed saying, " You

don't have kids do you? " (no, I don't, and it's written all over me)

So no - I don't believe I could come even CLOSE to the care mom

receives from the aides in regards to the everyday care.... I'll

admit it... But the aides can't come even close to me with my LOVE

for Mumsie! So there! LOL

Again, kudos to those of you who are able to do this for your LO at

home.

And kudos to the rest of us too - we can't do it, for whatever

reason, and deal with that false guilt (you know I was coming with

this) of not being able to do it... And we plug along anyway - doing

what we can...

>

> Hi ,

>

> I totally agree! When we would go to see my MIL in The NH the

first

> thing she would ask us to do is to get her out of the group

setting.

> All the people and the noise would drive her crazy. As I spoke to

her

> she would gradually come back to a higher functioning level.

>

> I often think about taking a leave from my job to say home with her

> but I don't think I could care for her at this stage. She can no

> longer stand to transport and is mainly bedridden. She has trouble

> swallowing and is totally incontinent. She no longer remembers me

or

> her sons. It makes me so sad when my MIL cries because she never

> thought her life would end like this.

>

> I don't know how some of you do it. God bless all of you that take

> care of your love ones at home and to all the rest of us who devote

> so much time trying to make their quality of life for our LO

somewhat

> better. We all are just trying to do the best we can with a very

> difficult situation.

>

> Take care,

> Maureen

>

>

[Guest guest]

,

You rock my friend. I say Amen along with Donna R.

I'm only part-time caregiver to FIL (father-in-law), but I understand and see

the strain it puts on my MIL. She told me yesterday that she really isn't happy.

She sobs a lot these days, or so she says. She is on some kinda " happy pills "

but they seem to put her in an " oh whatever " kinda state. I know that at times I

portray her as somewhat insensitive but I must admit her life right now is

tough. I think she just waits for us to make the decisions that she really needs

to start making. When I talked to her on the phone I asked if I could set up an

appointment for Dizz to see if he has a UTI, she said she already did. It's the

day before she leaves for her two-week trip. But finally she got Dizz what he

needed. We also plan to go see his Neurologist, boy do I have a list for him.

Anyway, I'm doing all I can to help MIL out, but still it doesn't seem to help

her at all. SIL is coming next weekend to prepare for her caregiving experience.

I think it's really going to open

her eyes. Just to note too! That whole situation with SIL fulfilling her

promise to care for her dad, is working out perfectly for her family. They get

to take an extra trip up to Flagstaff to see BIL's father. So an extra blessing

for them.

I am so very thankful to all of you for your support and cheering me on when I

was planning on just giving up like my husband said originally. This past

weekend we got a moment to ourselves and he held me tight and told me how proud

he is of me and that I have really turned into a precious treasure. He can't

think of anyone that would do what I'm doing for his family and trying to

maintain our own house at the same time. I told him I could give him a list of

all the angels that do what I'm doing or should I say trying to do. Right here

from this list.

I have been playing catch-up with all my digests. So if I've missed sayin

welcome to any of you newbies, WELCOME. I think I missed you , sorry.

You've come to the right place though I am sad that another family has been with

the Lewy Bomb.

Okay I think I done now! you are precious to me and this group. I

treasure the stories you share with us about your mom and the haps at the NH.

(sorry I have a 13 yr. old) I also treasure your thoughts, so keep them coming

my friend.

Tori

FIL dx 1/06, saw signs from 2004, kidney failure 2/06, NH for rehab 3/06,

kicked out by insurance. Currently driving MIL crazy at home, he has diabetes,

history of prostate cancer, implanted artificial sphinxter (a button to squeeze

to empty bladder)

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[Guest guest]

Dear ,

Thanks for the sentiment but...there are some things to consider/remember.

I am fulfilling my dream to have my fabulous parents with me.

This would not have been possible if they hadn't been wiser about their

finances that I.

I'm not convinced that a 24/7 study would prove anything.

Come to our house and watch!

I have some serious concerns about the level of care I can provide.

Mum will not allow anyone in the house to help her.

In an NH she would be bathed more than once a month when she sees the doc.

In an NH someone should be watching 24/7 - I do sleep.

To me the most important thing is loving and caring.

Does not matter where or when - just show love.

- Kingston, Ontario, Canada

LO Mum 88(dx Jan. 05) and Dad 93 live with me.

25mg of Seroquel 8:00pm & 6:30 am only LBD related drug, so far

.5 Oxybutinin pm & am

---------------------------------

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