Really rough day

[Guest guest]

I am finding it very difficult to cope with mom's crying. it is not

just a few tears, but and all out whaling cry and once she starts, i

have a hard time calming her down. I stayed late at work to help

with

an admission ( work as RN in NH). Mom was getting done with supper

and

i was getting ready to leave when she got this scared look on her

face

and asked me to take her home. a month ago we took her home for the

day and she was so happy. well, she wasn't talking about a visit,

but

to take her home for good. mom's speech is very limited and she has

dificulty choosing her words then getting them out, so sometimes she

just ends up crying instead. she understands everything i tell her,

but i think that she is so lonely there that she wants to go home and

hopes it will be like nothing ever was wrong. believe me, if i could

quit my job and care for her at home i would do it in a minute. it's

just so heartwrenching to see her cry so hard and then i cry. she

kept

reaching for me and wouldn't let me go. after an hour and a half, i

thought i got her calmed down enough and left, but before i could

collect my things, her bed alarm was going off and i could hear her

sobbing again. i am now torn between taking her home for another day

visit or just forgetting that idea. she has been at the nursing home

for 16 months and we have taken her home each spring so she can see

her flowers. i knew this was coming, but i am still at odds with

finding a way to cope with it. the last thing i want is to make

things worse for mom. I work on the same floor that she lives on and

see her 10 days out of 14. her visitors are limited to Dad myself,

and my daughter, my brother maybe twice a month. i feel like i am

rambling on and on so for that i am sorry, thank you for listening.

katydid

[Guest guest]

---Dear Katydid

Your post hits home so much with me.I can do well with moms care

and understand the changes that this disease brings with it, until

the crying, when she breaks down and cries, it completely crushes

me.And then everything Ive learned about this disease and caring for

a loved one, just goes completely out the door and Im just broken in

half.Id rather fight a bear than to see her cry.Is your mom on an

anti depressant ?Moms on paxil and it has helped.Its doesnt stop it

completely but its definately an improvement.I feel for you both so

much because I can feel every word that your saying on this

subject.I wish there was an answer that would take the pain away but

if there is I havent found it yet either.But you are not alone in

how your feeling.And there will be better days, and then there will

be more bad days, but please know that through them all we are here

with you and Hoping for better days for you both.Heartfelt hugs to

you and your dear mom. Ron

In LBDcaregivers , " katydid718 "

wrote:

>

> I am finding it very difficult to cope with mom's crying. it is

not

> just a few tears, but and all out whaling cry and once she starts,

i

> have a hard time calming her down. I stayed late at work to help

> with

> an admission ( work as RN in NH). Mom was getting done with supper

> and

> i was getting ready to leave when she got this scared look on her

> face

> and asked me to take her home. a month ago we took her home for

the

> day and she was so happy. well, she wasn't talking about a visit,

> but

> to take her home for good. mom's speech is very limited and she

has

> dificulty choosing her words then getting them out, so sometimes

she

> just ends up crying instead. she understands everything i tell

her,

> but i think that she is so lonely there that she wants to go home

and

> hopes it will be like nothing ever was wrong. believe me, if i

could

> quit my job and care for her at home i would do it in a minute.

it's

> just so heartwrenching to see her cry so hard and then i cry. she

> kept

> reaching for me and wouldn't let me go. after an hour and a half,

i

> thought i got her calmed down enough and left, but before i could

> collect my things, her bed alarm was going off and i could hear

her

> sobbing again. i am now torn between taking her home for another

day

> visit or just forgetting that idea. she has been at the nursing

home

> for 16 months and we have taken her home each spring so she can

see

> her flowers. i knew this was coming, but i am still at odds with

> finding a way to cope with it. the last thing i want is to make

> things worse for mom. I work on the same floor that she lives on

and

> see her 10 days out of 14. her visitors are limited to Dad

myself,

> and my daughter, my brother maybe twice a month. i feel like i am

> rambling on and on so for that i am sorry, thank you for

listening.

> katydid

>

[Guest guest]

Yes, I think my mom's crying was the worst symptom to have.

Especially since she wasn't the crier in the family, it was so unlike

her to cry. And not just a little but like you said - sobbing,

weeping. We definitely saw a difference when she was put on Celexa.

She was still teary, but not as weepy. She cried at every visit -

once I'd walk in the door she would start the crying. But after she

was put on Celexa the crying was just a couple of minutes vs. the

long drawn out sobbing.

The other suggestion is that I understand your mom has limited

visitors that are family. If there's a way to recruit more visitors

and have them do one-on-one visits. Meaning, when they visit have

them take your mom to a private area like her bedroom or garden or

wherever there's limited people. My mom's visits was much more

positive that way. Part of the LBD is they're easily distracted and

in a room full of other residents it can be so chaotic for them to

pay attention to their visitor. Ideas are to recruit your mom's

friends, neighbors, church group, your friends, anyone. And work on

having different visitors on different days.

Another suggestion is to look into hospice. You may be surprised that

your mom is eligible and if so, they have a social worker, nurse,

chaplain, volunteers who visit - and do so on different days. (And

paid for by Medicare)

My mom was lucky enough to pretty much have a daily visitor the

entire time she was in the NH. I had a 'guest book' in her BR so I

could keep track of the visitors (although I was the one who wrote in

it most of the time - towards the end people finally got the hang of

it) Another thought is a white board in your mom's room made like a

calendar and have visitors write their name down on the day they

visited.

Another thought is to get volunteers yourself. One suggestion is this

site that could help you get volunteers:

Senior Corps

The Senior Companion Program brings together volunteers age 60 and

over with adults in their community who have difficulty with the

simple tasks of day-to-day living. Companions help out on a personal

level by assisting with shopping and light chores, interacting with

doctors, or just making a friendly visit. RSVP connects volunteers

age 55 and over with service opportunities in their communities that

match their skills and availability. From building houses to

immunizing children, from enhancing the capacity of non-profit

organizations to improving and protecting the environment, RSVP

volunteers put their unique talents to work to make a difference.

http://www.seniorcorps.org/

There are other suggestions as well here:

http://health.groups.yahoo.com/group/LBDcaregivers/links

go into the folder marked:

Additional Help

There comes a time when 24/7 caregivers realize that they can't do it

alone anymore. Links to find help through companions, respite, adult

day care, etc.

Hope you find something that works...

>

> I am finding it very difficult to cope with mom's crying. it is not

> just a few tears, but and all out whaling cry and once she starts,

i

> have a hard time calming her down. I stayed late at work to help

> with

> an admission ( work as RN in NH). Mom was getting done with supper

> and

> i was getting ready to leave when she got this scared look on her

> face

> and asked me to take her home. a month ago we took her home for

the

> day and she was so happy. well, she wasn't talking about a visit,

> but

> to take her home for good. mom's speech is very limited and she

has

> dificulty choosing her words then getting them out, so sometimes

she

> just ends up crying instead. she understands everything i tell

her,

> but i think that she is so lonely there that she wants to go home

and

> hopes it will be like nothing ever was wrong. believe me, if i

could

> quit my job and care for her at home i would do it in a minute.

it's

> just so heartwrenching to see her cry so hard and then i cry. she

> kept

> reaching for me and wouldn't let me go. after an hour and a half, i

> thought i got her calmed down enough and left, but before i could

> collect my things, her bed alarm was going off and i could hear her

> sobbing again. i am now torn between taking her home for another

day

> visit or just forgetting that idea. she has been at the nursing

home

> for 16 months and we have taken her home each spring so she can see

> her flowers. i knew this was coming, but i am still at odds with

> finding a way to cope with it. the last thing i want is to make

> things worse for mom. I work on the same floor that she lives on

and

> see her 10 days out of 14. her visitors are limited to Dad myself,

> and my daughter, my brother maybe twice a month. i feel like i am

> rambling on and on so for that i am sorry, thank you for

listening.

> katydid

>

[Guest guest]

Oh, Katydid, I can almost feel the pain in your heart! With my mom, the

sobbing and clinging was the worst also...is it time for a review of your

mom's meds? That sort of hopeless depression usually can be treated -

although I'm not an expert I would wonder if there isn't something that can

be done in that way maybe?

Meanwhile I just feel for you, and your own pain at your mom's suffering,

and I don't know what to tell you about that except that I hope and pray for

strength and wisdom for you!

I'm so sorry you're having to go through this, even though at the same time,

I believe, in some strange way, we have a gift in being able to share our

loved one's pain...

His,

Sherry ('s daughter)

www.owly.net

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

>I am finding it very difficult to cope with mom's crying. it is not

> just a few tears, but and all out whaling cry and once she starts, i

> have a hard time calming her down. I stayed late at work to help

> with

> an admission ( work as RN in NH). Mom was getting done with supper

> and

> i was getting ready to leave when she got this scared look on her

> face

> and asked me to take her home. a month ago we took her home for the

> day and she was so happy. well, she wasn't talking about a visit,

> but

> to take her home for good. mom's speech is very limited and she has

> dificulty choosing her words then getting them out, so sometimes she

> just ends up crying instead. she understands everything i tell her,

> but i think that she is so lonely there that she wants to go home and

> hopes it will be like nothing ever was wrong. believe me, if i could

> quit my job and care for her at home i would do it in a minute. it's

> just so heartwrenching to see her cry so hard and then i cry. she

> kept

> reaching for me and wouldn't let me go. after an hour and a half, i

> thought i got her calmed down enough and left, but before i could

> collect my things, her bed alarm was going off and i could hear her

> sobbing again. i am now torn between taking her home for another day

> visit or just forgetting that idea. she has been at the nursing home

> for 16 months and we have taken her home each spring so she can see

> her flowers. i knew this was coming, but i am still at odds with

> finding a way to cope with it. the last thing i want is to make

> things worse for mom. I work on the same floor that she lives on and

> see her 10 days out of 14. her visitors are limited to Dad myself,

> and my daughter, my brother maybe twice a month. i feel like i am

> rambling on and on so for that i am sorry, thank you for listening.

[Guest guest]

thanks for all of the responses.  i was wondering if maybe i should suggest a

change in mom's antidepressant.  she is on zoloft and i am not that fond of that

particular antidepressant. I also was not sure how much of the crying is

the disease process or just plain being lonely.  She and dad were inseperable,

did everything together, work, fish, play, travel whatever.  i know dad has done

his share of spilling the tears too and feeling guilty for being the healthier

one and able to stay connected with his life.  i encourage him to do things with

my step brothers, he just came back from a fishing trip in canada for a week and

we had to push him into going. he would trade places with mom in an instant if

it were possible.  yes, i will talk to the psych dr and request a change in

meds, also i think i will have a chat with social services and get them more

involved with in house visits again.  another thing i was wondering is, does

soft music

seem to be soothing to them or more irritating.  when we take mom to the

afternoon activities that involve music, she wants to leave within 5 or 10

minutes.  where before all the lbd started that was part of their life, my dad

and she would go to social events and he would sit and play the guitar along

with the others and she would love it, tapping her feet and doing a dance in her

chair.  so much has changed.  i am rambling again, just tell me to shut up, no

offense taken.    thanks and love and   hugs   katydid

Re: Really rough day

Yes, I think my mom's crying was the worst symptom to have.

Especially since she wasn't the crier in the family, it was so unlike

her to cry. And not just a little but like you said - sobbing,

weeping. We definitely saw a difference when she was put on Celexa.

She was still teary, but not as weepy. She cried at every visit -

once I'd walk in the door she would start the crying. But after she

was put on Celexa the crying was just a couple of minutes vs. the

long drawn out sobbing.

The other suggestion is that I understand your mom has limited

visitors that are family. If there's a way to recruit more visitors

and have them do one-on-one visits. Meaning, when they visit have

them take your mom to a private area like her bedroom or garden or

wherever there's limited people. My mom's visits was much more

positive that way. Part of the LBD is they're easily distracted and

in a room full of other residents it can be so chaotic for them to

pay attention to their visitor. Ideas are to recruit your mom's

friends, neighbors, church group, your friends, anyone. And work on

having different visitors on different days.

Another suggestion is to look into hospice. You may be surprised that

your mom is eligible and if so, they have a social worker, nurse,

chaplain, volunteers who visit - and do so on different days. (And

paid for by Medicare)

My mom was lucky enough to pretty much have a daily visitor the

entire time she was in the NH. I had a 'guest book' in her BR so I

could keep track of the visitors (although I was the one who wrote in

it most of the time - towards the end people finally got the hang of

it) Another thought is a white board in your mom's room made like a

calendar and have visitors write their name down on the day they

visited.

Another thought is to get volunteers yourself. One suggestion is this

site that could help you get volunteers:

Senior Corps

The Senior Companion Program brings together volunteers age 60 and

over with adults in their community who have difficulty with the

simple tasks of day-to-day living. Companions help out on a personal

level by assisting with shopping and light chores, interacting with

doctors, or just making a friendly visit. RSVP connects volunteers

age 55 and over with service opportunities in their communities that

match their skills and availability. From building houses to

immunizing children, from enhancing the capacity of non-profit

organizations to improving and protecting the environment, RSVP

volunteers put their unique talents to work to make a difference.

http://www.seniorco rps.org/

There are other suggestions as well here:

http://health. groups.yahoo. com/group/ LBDcaregivers/ links

go into the folder marked:

Additional Help

There comes a time when 24/7 caregivers realize that they can't do it

alone anymore. Links to find help through companions, respite, adult

day care, etc.

Hope you find something that works...

>

> I am finding it very difficult to cope with mom's crying. it is not

> just a few tears, but and all out whaling cry and once she starts,

i

> have a hard time calming her down. I stayed late at work to help

> with

> an admission ( work as RN in NH). Mom was getting done with supper

> and

> i was getting ready to leave when she got this scared look on her

> face

> and asked me to take her home. a month ago we took her home for

the

> day and she was so happy. well, she wasn't talking about a visit,

> but

> to take her home for good. mom's speech is very limited and she

has

> dificulty choosing her words then getting them out, so sometimes

she

> just ends up crying instead. she understands everything i tell

her,

> but i think that she is so lonely there that she wants to go home

and

> hopes it will be like nothing ever was wrong. believe me, if i

could

> quit my job and care for her at home i would do it in a minute.

it's

> just so heartwrenching to see her cry so hard and then i cry. she

> kept

> reaching for me and wouldn't let me go. after an hour and a half, i

> thought i got her calmed down enough and left, but before i could

> collect my things, her bed alarm was going off and i could hear her

> sobbing again. i am now torn between taking her home for another

day

> visit or just forgetting that idea. she has been at the nursing

home

> for 16 months and we have taken her home each spring so she can see

> her flowers. i knew this was coming, but i am still at odds with

> finding a way to cope with it. the last thing i want is to make

> things worse for mom. I work on the same floor that she lives on

and

> see her 10 days out of 14. her visitors are limited to Dad myself,

> and my daughter, my brother maybe twice a month. i feel like i am

> rambling on and on so for that i am sorry, thank you for

listening.

> katydid

>

[Guest guest]

Katydid,

With you around her so much, I wonder if she thinks you are leaving her alone..

I always said Mom was mostly afraid. And if your Mom depends on you, and then

has to stay there " alone, " I wonder if that would be hard for her and scare her.

I wonder if you can do some reassurances that you will be back and if it would

help.

Just a thought.

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.

Really rough day

I am finding it very difficult to cope with mom's crying. it is not

just a few tears, but and all out whaling cry and once she starts, i

have a hard time calming her down. I stayed late at work to help

with

an admission ( work as RN in NH). Mom was getting done with supper

and

i was getting ready to leave when she got this scared look on her

face

and asked me to take her home. a month ago we took her home for the

day and she was so happy. well, she wasn't talking about a visit,

but

to take her home for good. mom's speech is very limited and she has

dificulty choosing her words then getting them out, so sometimes she

just ends up crying instead. she understands everything i tell her,

but i think that she is so lonely there that she wants to go home and

hopes it will be like nothing ever was wrong. believe me, if i could

quit my job and care for her at home i would do it in a minute. it's

just so heartwrenching to see her cry so hard and then i cry. she

kept

reaching for me and wouldn't let me go. after an hour and a half, i

thought i got her calmed down enough and left, but before i could

collect my things, her bed alarm was going off and i could hear her

sobbing again. i am now torn between taking her home for another day

visit or just forgetting that idea. she has been at the nursing home

for 16 months and we have taken her home each spring so she can see

her flowers. i knew this was coming, but i am still at odds with

finding a way to cope with it. the last thing i want is to make

things worse for mom. I work on the same floor that she lives on and

see her 10 days out of 14. her visitors are limited to Dad myself,

and my daughter, my brother maybe twice a month. i feel like i am

rambling on and on so for that i am sorry, thank you for listening.

katydid

[Guest guest]

I found the dry erase board recommended here good for messages from other

visitors to

Mom, as well as messages I wanted others to reinforce from me to Mom, like when

I would

return, something she needed I would take with me. As other visitors signed

when they

were there, I could then reinforce to Mom who had been when she forgot. I found

it very

useful.

Gibsons BC

Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD.

>

> sometimes i wonder if my being there almost daily is good or bad.  everyday

when i

leave i tell her i am done working for today.  sometimes she asks me to stay

with her for a

while and i  do. when i do leave i tell her when i will return.  i'll tell her

if i have a day off

that i won't be here tomorrow, but on the next day.  i am not sure she has a

good sense of

time or not, but maybe a calendar as someone mentioned may help.  i always tell

her who

her caregiver and nurse are for the next shift.  i know she is scared sometime

and my

gosh, who wouldn't be.  when she was crying so much on friday and kept asking me

to

take her home i told her to go to sleep and dream about going home.  dad will be

there

today as he is every other day.  we are so close, mom and i and have always been

we could

almost finish each others sentences.  we used to work on projects together and

not say a

word, but be able to anticipate what the other needed without

> talking. that gave my first husband the willies when he watched us.  the part

that hurts

so much is that she always feared getting alzheimer's and in a way i wish her

form of

dementia was alzheimer's because at this stage she would have that blank look of

" no

body home " but with lbd that isn't the case.  keep praying for all of us.  i

will get that

calendar or dry  erase board and find a way to keep her in tuned to time

frames.   love and

hugs to all   katydid

> Really rough day

>

> I am finding it very difficult to cope with mom's crying. it is not

> just a few tears, but and all out whaling cry and once she starts, i

> have a hard time calming her down. I stayed late at work to help

> with

> an admission ( work as RN in NH). Mom was getting done with supper

> and

> i was getting ready to leave when she got this scared look on her

> face

> and asked me to take her home. a month ago we took her home for the

> day and she was so happy. well, she wasn't talking about a visit,

> but

> to take her home for good. mom's speech is very limited and she has

> dificulty choosing her words then getting them out, so sometimes she

> just ends up crying instead. she understands everything i tell her,

> but i think that she is so lonely there that she wants to go home and

> hopes it will be like nothing ever was wrong. believe me, if i could

> quit my job and care for her at home i would do it in a minute. it's

> just so heartwrenching to see her cry so hard and then i cry. she

> kept

> reaching for me and wouldn't let me go. after an hour and a half, i

> thought i got her calmed down enough and left, but before i could

> collect my things, her bed alarm was going off and i could hear her

> sobbing again. i am now torn between taking her home for another day

> visit or just forgetting that idea. she has been at the nursing home

> for 16 months and we have taken her home each spring so she can see

> her flowers. i knew this was coming, but i am still at odds with

> finding a way to cope with it. the last thing i want is to make

> things worse for mom. I work on the same floor that she lives on and

> see her 10 days out of 14. her visitors are limited to Dad myself,

> and my daughter, my brother maybe twice a month. i feel like i am

> rambling on and on so for that i am sorry, thank you for listening.

> katydid

>

>