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Well, didn't make it to the parade after all. She's had SUCH a great

week...then this morning her roommate was in the bathroom and my mom

couldn't get in, and had an accident in bed. This REALLY upset her, she was

furious with the aides and her roommate, and probably herself, and of course

it totally ruined her morning. The aide went in to change the bed, and my

mom was so embarassed that the aide " accidently " knocked my mom's water

glass into the bed, then apologized all over the place while she changed

it...I thought that was so nice! I talked with her quite a while when I

went to pick her up, and she was insistent that she wanted to just stay

there and not go anywhere, so we sadly had to leave her behind.

This really set my mom back. It was traumatic for her, she's never wet the

bed in her life. But it really ruined her day and she didn't want to go to

the parade after that. But the staff did a lot of one-on-one with her today

to try and work through it, because I told them I wanted to bring her over

for a cookout later so the whole day wasn't a waste, and they said they'd

work with her and try to get her in a better frame of mind so she'd want to

come over.

The parade went REALLY well, fantastic in fact :). But I kept thinking

about my mom and worrying about her. During the time I was playing my cell

phone rang, and it was her. She left a voice mail message that she was very

angry that I'd gone to the parade without her after she'd looked forward to

it all week, and if I ever wanted to see her again I'd know where to find

her. In the background I could hear the nurses saying, " Oh , please

don't talk that way to Sherry... " Apparently she'd forgotten all about what

had happened this morning, and that I'd been there and she wouldn't come

with me, and just got very hurt and angry that we'd been excited all week

about doing this parade together, then I went and left her behind...

I waited until just before suppertime to go see her and invite her over for

dinner, so I could give the staff as long as possible to work with her.

(They usually do a much better job than even I do at helping her get past

these emotive periods.) When I got there she said they were having waffles

for supper and she wanted to stay, but could she come over after supper? and

of course I said yes, and we waited for her to finish.

She spent about 4 hours here, first we went for a drive around the lake (we

live a few blocks off the largest inland lake in Michigan), which she

thoroughly enjoyed. Then she came here and played with the dogs and the

parrots, and played her digital keyboard which we keep here for her...she

had her cigarettes whenever she wanted one, and her DC's in the

fridge...more like home, and she was very relaxed. But VERY forgetful and

even confused at times, and delusional. Her traumatic experience this

morning really put an end to her wonderfully aware and lucid and positive

week.

But one of the funny things she said was something about the nurses trying

to take her " Lewies " away from her, and that they were HER Lewies, and they

couldn't have them! :)

Tomorrow we're going to take her out for ice cream, if she's up for it; I

left her with that thought when we dropped her off tonight at 10:00ish, so

she'd have something to look forward to.

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...

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Sherry,

So sorry didn't get to enjoy the parade. Sounds like a nice day anyway.

And ice cream will be great tomorrow. I am sure this too shall pass.

Glad you had a good parade.

Hugs,

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.

the parade

Well, didn't make it to the parade after all. She's had SUCH a great

week...then this morning her roommate was in the bathroom and my mom

couldn't get in, and had an accident in bed. This REALLY upset her, she was

furious with the aides and her roommate, and probably herself, and of course

it totally ruined her morning. The aide went in to change the bed, and my

mom was so embarassed that the aide " accidently " knocked my mom's water

glass into the bed, then apologized all over the place while she changed

it...I thought that was so nice! I talked with her quite a while when I

went to pick her up, and she was insistent that she wanted to just stay

there and not go anywhere, so we sadly had to leave her behind.

This really set my mom back. It was traumatic for her, she's never wet the

bed in her life. But it really ruined her day and she didn't want to go to

the parade after that. But the staff did a lot of one-on-one with her today

to try and work through it, because I told them I wanted to bring her over

for a cookout later so the whole day wasn't a waste, and they said they'd

work with her and try to get her in a better frame of mind so she'd want to

come over.

The parade went REALLY well, fantastic in fact :). But I kept thinking

about my mom and worrying about her. During the time I was playing my cell

phone rang, and it was her. She left a voice mail message that she was very

angry that I'd gone to the parade without her after she'd looked forward to

it all week, and if I ever wanted to see her again I'd know where to find

her. In the background I could hear the nurses saying, " Oh , please

don't talk that way to Sherry... " Apparently she'd forgotten all about what

had happened this morning, and that I'd been there and she wouldn't come

with me, and just got very hurt and angry that we'd been excited all week

about doing this parade together, then I went and left her behind...

I waited until just before suppertime to go see her and invite her over for

dinner, so I could give the staff as long as possible to work with her.

(They usually do a much better job than even I do at helping her get past

these emotive periods.) When I got there she said they were having waffles

for supper and she wanted to stay, but could she come over after supper? and

of course I said yes, and we waited for her to finish.

She spent about 4 hours here, first we went for a drive around the lake (we

live a few blocks off the largest inland lake in Michigan), which she

thoroughly enjoyed. Then she came here and played with the dogs and the

parrots, and played her digital keyboard which we keep here for her...she

had her cigarettes whenever she wanted one, and her DC's in the

fridge...more like home, and she was very relaxed. But VERY forgetful and

even confused at times, and delusional. Her traumatic experience this

morning really put an end to her wonderfully aware and lucid and positive

week.

But one of the funny things she said was something about the nurses trying

to take her " Lewies " away from her, and that they were HER Lewies, and they

couldn't have them! :)

Tomorrow we're going to take her out for ice cream, if she's up for it; I

left her with that thought when we dropped her off tonight at 10:00ish, so

she'd have something to look forward to.

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...

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I'm sorry didn't make the parade.. :( But you made it up to her

by having her over last night and ice cream today.

I remember how devastated my mom was when she became incontinent and

needing help into the bathroom... She'd cry every time the CNAs would

bring her to the bathroom - mainly b/c she realized how dependant she

became and it was devastating for her... :( I feel for but

you're such a wonderful daughter to be one step ahead of her w/

ideas. Kudos to you :)

>

> Well, didn't make it to the parade after all. She's had SUCH

a great

> week...then this morning her roommate was in the bathroom and my

mom

> couldn't get in, and had an accident in bed. This REALLY upset

her, she was

> furious with the aides and her roommate, and probably herself, and

of course

> it totally ruined her morning. The aide went in to change the bed,

and my

> mom was so embarassed that the aide " accidently " knocked my mom's

water

> glass into the bed, then apologized all over the place while she

changed

> it...I thought that was so nice! I talked with her quite a while

when I

> went to pick her up, and she was insistent that she wanted to just

stay

> there and not go anywhere, so we sadly had to leave her behind.

>

> This really set my mom back. It was traumatic for her, she's never

wet the

> bed in her life. But it really ruined her day and she didn't want

to go to

> the parade after that. But the staff did a lot of one-on-one with

her today

> to try and work through it, because I told them I wanted to bring

her over

> for a cookout later so the whole day wasn't a waste, and they said

they'd

> work with her and try to get her in a better frame of mind so she'd

want to

> come over.

>

> The parade went REALLY well, fantastic in fact :). But I kept

thinking

> about my mom and worrying about her. During the time I was playing

my cell

> phone rang, and it was her. She left a voice mail message that she

was very

> angry that I'd gone to the parade without her after she'd looked

forward to

> it all week, and if I ever wanted to see her again I'd know where

to find

> her. In the background I could hear the nurses saying, " Oh ,

please

> don't talk that way to Sherry... " Apparently she'd forgotten all

about what

> had happened this morning, and that I'd been there and she wouldn't

come

> with me, and just got very hurt and angry that we'd been excited

all week

> about doing this parade together, then I went and left her behind...

>

> I waited until just before suppertime to go see her and invite her

over for

> dinner, so I could give the staff as long as possible to work with

her.

> (They usually do a much better job than even I do at helping her

get past

> these emotive periods.) When I got there she said they were having

waffles

> for supper and she wanted to stay, but could she come over after

supper? and

> of course I said yes, and we waited for her to finish.

>

> She spent about 4 hours here, first we went for a drive around the

lake (we

> live a few blocks off the largest inland lake in Michigan), which

she

> thoroughly enjoyed. Then she came here and played with the dogs

and the

> parrots, and played her digital keyboard which we keep here for

her...she

> had her cigarettes whenever she wanted one, and her DC's in the

> fridge...more like home, and she was very relaxed. But VERY

forgetful and

> even confused at times, and delusional. Her traumatic experience

this

> morning really put an end to her wonderfully aware and lucid and

positive

> week.

>

> But one of the funny things she said was something about the nurses

trying

> to take her " Lewies " away from her, and that they were HER Lewies,

and they

> couldn't have them! :)

>

> Tomorrow we're going to take her out for ice cream, if she's up for

it; I

> left her with that thought when we dropped her off tonight at

10:00ish, so

> she'd have something to look forward to.

>

> 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...

>

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Hi Sherry,

You are doing such a great job with . We have to learn to be so flexible,

because we never know what state of mind our LO will be in when the time comes

to do a planned event. I am so happy it went well with Jim at the fireworks and

that the night was warm. I don't know if I would have brought Jim if it was cold

and windy. I could leave the car running with the heater on and bundle him up,

but I don't think I would have brought him if it was cold, so I have been

fortunate the last few years that it is warm on the 4th.

The toileting issues are so hard on our LOs. Jim is not really incontinent, he

just can't get to the toilet when he needs to and no one can hear him in his

whispery voice say he needs to go. He will hold on for as long as he possibly

can before letting it go and that is how I think he keeps getting so many UTIs.

It can be other things involved in getting UTIs, but I think his holding on is a

big contributor. It is one of the reasons I spend at least 8 hours at the nh to

be " toilet monitor. " While I am there, I toilet Jim at least 4 times. The CNAs

will let him be wet for hours if I am not there to get him on the toilet. It's

the same with poop too. Jim is more relaxed if I take him to the toilet, because

I have the time to sit and wait for him to go, but he feels rushed with the CNAs

and nothing happens and they don't have the time to sit and wait, so they take

him off the toilet and then eventually he poops in his diaper.

It just breaks my heart with the toileting issues at the nh. People cry, because

they have no way to get to a toilet without help and no one will help them, the

CNAs are too busy with whatever they are doing with other people and tell them

to stop crying and wait. These people have to go to the toilet. They know when

they have to go, they are not incontinent or oblivious of going in their diaper.

They are embarrassed about it, yet the CNAs think they should just go in their

diaper and be done with it and stop crying as if they were a child. They need

" Toilet Monitors " for all those that are not incontinent and who will be there

for that job only to take people to the toilet. It's especially the ladies at

the nh that are actually tormented over not being able to get to a toilet. The

men usually are very quiet, don't cry or get upset or at least don't show it

outward, but the women cry and are very frustrated. The thing that is upsetting

to me is it

has to be the person's own CNA that takes them. I have seen CNAs in the hall

that are free for the time and because it is not their patient do not help the

person to the toilet, they have to wait for their own CNA. That doesn't seem

like team work. If you are not busy at the time, you can not help someone else?!

Maybe it is they are too lazy to do the toileting and would rather pass it off

to the person's CNA and use it for an excuse,so they don't have to do it.

Anyway, I am sorry your mom had to experience this toileting nh disaster. It is

enough to throw anyone's day off. I can only imagine what it must feel like. At

least they forget quickly.

Hope today is a better day with the ice cream outing.

Lugs= Love plus Hugs........................Jan

the parade

Well, didn't make it to the parade after all.  She's had SUCH a great

week...then this morning her roommate was in the bathroom and my mom

couldn't get in, and had an accident in bed.  This REALLY upset her, she was

furious with the aides and her roommate, and probably herself, and of course

it totally ruined her morning.  The aide went in to change the bed, and my

mom was so embarassed that the aide " accidently " knocked my mom's water

glass into the bed, then apologized all over the place while she changed

it...I thought that was so nice!  I talked with her quite a while when I

went to pick her up, and she was insistent that she wanted to just stay

there and not go anywhere, so we sadly had to leave her behind.

This really set my mom back.  It was traumatic for her, she's never wet the

bed in her life.  But it really ruined her day and she didn't want to go to

the parade after that.  But the staff did a lot of one-on-one with her today

to try and work through it, because I told them I wanted to bring her over

for a cookout later so the whole day wasn't a waste, and they said they'd

work with her and try to get her in a better frame of mind so she'd want to

come over.

The parade went REALLY well, fantastic in fact :).  But I kept thinking

about my mom and worrying about her.  During the time I was playing my cell

phone rang, and it was her.  She left a voice mail message that she was very

angry that I'd gone to the parade without her after she'd looked forward to

it all week, and if I ever wanted to see her again I'd know where to find

her.  In the background I could hear the nurses saying, " Oh , please

don't talk that way to Sherry... "   Apparently she'd forgotten all about what

had happened this morning, and that I'd been there and she wouldn't come

with me, and just got very hurt and angry that we'd been excited all week

about doing this parade together, then I went and left her behind...

I waited until just before suppertime to go see her and invite her over for

dinner, so I could give the staff as long as possible to work with her.

(They usually do a much better job than even I do at helping her get past

these emotive periods.)  When I got there she said they were having waffles

for supper and she wanted to stay, but could she come over after supper? and

of course I said yes, and we waited for her to finish.

She spent about 4 hours here, first we went for a drive around the lake (we

live a few blocks off the largest inland lake in Michigan), which she

thoroughly enjoyed.  Then she came here and played with the dogs and the

parrots, and played her digital keyboard which we keep here for her...she

had her cigarettes whenever she wanted one, and her DC's in the

fridge...more like home, and she was very relaxed.  But VERY forgetful and

even confused at times, and delusional.  Her traumatic experience this

morning really put an end to her wonderfully aware and lucid and positive

week.

But one of the funny things she said was something about the nurses trying

to take her " Lewies " away from her, and that they were HER Lewies, and they

couldn't have them!  :)

Tomorrow we're going to take her out for ice cream, if she's up for it; I

left her with that thought when we dropped her off tonight at 10:00ish, so

she'd have something to look forward to.

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...

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

Welcome to LBDcaregivers. 

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