My Sister Joyce

[Guest guest]

June, I know how difficult witnessing the decline is. I'm sorry for what you

are going through, as well as what Joyce is experiencing. What meds is she

currently on?

Gibsons BC

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

>

> Hello everyone,

> My sister, Joyce, seems to be getting so weak. It seems that the Parkinson's

is taking its toll on her. She just seems so down while, in the past, she was

always smiling. Again, she wants me with her all the time. She told me that

everyone there wants me to come and stay. This evening was the first time that

she asked me not to go but I had family responsibilities and had to leave even

though I sincerely didn't want to leave her. It seems to me that she is slipping

a little each day and her doctor knows this and is doing all he can. She doesn't

have a UTI. I sure hope that her medicine routine does not have to be changed

but it might if she continues downhill. She bearly speaks above a whisper. Last

night when the nurse brought her medication, she could not swallow the pills. It

took several minutes for the nurse to get her to swallow and Joyce got very

angry with the nurse. The nurse was so surprised, as we were, because this is

just not Joyce's nature. She definitely has the Lewy Lean. It seems to me that

she has a lot of the things listed on the LBD Approximate Phases Stage IV.

However, I have seen her bounce back so many times that I hope she will this

time. She is also having trouble feeding herself. I am going to have lunch with

her at Wesley Woods on Monday and observe for myself. Thank you all for you help

and support.

> Love,

> June Keeble

>

[Guest guest]

June,

Sorry your sister is having so many problems. As most have written about the

meds, I want to also. Have them change only one drug at a time so you can

figure out what is doing what.

But the ad on TV says Abilify is not to be given to older patients with

dementia. And then to add Zolof and Xanax, that seems like a lot, all for

almost the same thing as Abilify, for a dementia patient with LBD.

It seems they are trying to get her back to " regular " with meds, which is

almost impossible. And it seems she is getting frighten to want you there with

her all the time. The nh needs to learn to work on her time schedule. Anyone

would have problems with that much medication to swallow even if swallowing

wasn't a problem.

Mom would have been passed out for a week on all that.

Just my personal opinion.

Hugs,

Donna R

Caregiver for Mom for 3

years and 4th year in a nh.

(In MI)

She was almost 89 when she

died in '02. No dx other

than mine.

My Sister Joyce

, thanks so much for your concern. About a year before she was diagnosed

with LBD with Parkinsonism, she had a very severe episode of bad hallucinations

that were so bad she was hospitalized and had to be restrained for about four

days. The doctors have had a terrible time getting Joyce's meds to cooperate

with each other. After having very severe hallucinations (she thought that her

husband and I were trying to kill her and we couldn't go into her room for about

a week) and only after the doctors got the meds that were right for her, she did

great until the last two weeks. She is on Exelon Paatch at bedtime, Levothroid

for thyroid problems, Premarin for unbearable post-menopausal symptoms, Prevacid

for reflux, aspirin 81 mg every morning, Zoloft (which she has been on for

several years before she started having LBD symptoms), Xanax Gen 0.25 mg tab

every 8 hours, Abilify 20 mg tab, one every morning, Namenda 10 mg tab, one

tablet twice a day and Seroquel, 200 mg. at bedtime. I realize this is a lot of

medicine but it is necessary to manage the hallucinations. I'm not sure but I

think the doctor tried some drug for the Parkinson's but had to discontinue it

because Joyce just couldn't tolerate it. I don't know the name of the drug. I

think one reason Joyce is on so much medicine is because all her life, even from

childhood, she was a very nervous person. The least little thing scared her to

death. She always has been a worrier also. I think the doctor will re-evaluate

her next Wednesday unless we have to call him before then. Any advice you can

give me will certainly be appreciated.

Blessings,

June Keeble

[Guest guest]

june,

i am not sure if teh laugh is a symptom or not but i can relate some days daddy

thought everything was funny, i dropped and broke a glass on my foot and cut my

foot and he couldnt stop laughing, or something funny on tv when he could watch

and he couldnt stop laughing it seemed to go in stages,  but again not sure if

that is lbd or not. 

glad to hear that you sister had a good day with you hugs. sharon

ps dont forget that lbd'ers have altered depth perception, so that is why she is

missing the chair, she cant tell excatly where it is.  just a reminder, hugs.

sharon a-m

Daughter of Leonard whom was diagnosed in May 2004 and died of complicatons

*blood pressure started dropping and wouldn't recover* on Sept 25, 2005. He had

bad case of Dr Jekyl/Mr Hyde scenarios. He was showing hallucinations and

falling issues since prior to 1994. We moved in to take care of him Jan 19, 2003

and still live in his house. And in feb 2009, i have been diagonosed with 99%

probability of lbd.

Subject: My Sister Joyce

To: LBDcaregivers

Date: Tuesday, March 17, 2009, 12:28 PM

Hello friends.

I just visited my sister Joyce and she seems so much better today. Yesterday,

was not so good. As soon as I walked in on Monday, she told me she fell. When I

asked the nurses, they said they found Joyce on the floor of her room and Joyce

told them she fell. She was not crying out or calling for help.. They think that

she was trying to sit down and just missed the chair. I think that this is very

likely as I've seen her try to sit down by herself. She had no injuries but it

really scared her. The whole time I was with her yesterday, she talked about

falling and being scared. She started the new med regime last Friday and my

first thought was that the change was not working. Remember, the Dr.

discontinued the Seroquel and added Sinemet (SP). If she does well, he plans to

try and back off the Abilify. I sure hope it works and the horrible

hallucinations do not re-occur. Anyway, today she was smiling and seemed so much

better. She still has stiff fingers and

very stiff legs. We were told that she gets daily Physical Therapy for the body

and Occupational Therapy for the cognitive issues. MY QUESTION: Have any of you

used Occupational Therapy for your LO? Do you think that it was beneficial?

ANOTHER QUESTION: Joyce constantly has short monotimus humming sounds virtually

all the time. Is this part of the disease? Sometimes, everything is funny and

she laughs all the time. She did that today. Is this also part of the disease.

Thank you all for your help.

Blessings,

June Keeble

[Guest guest]

June, I'm so glad you are getting happy sounds, like humming and laughing.

They're so much better than the crying so many of us have to deal with. Enjoy

days like today with your sister. Fond memories in the making.

>

> Hello friends.

> I just visited my sister Joyce and she seems so much better today. Yesterday,

was not so good. As soon as I walked in on Monday, she told me she fell. When I

asked the nurses, they said they found Joyce on the floor of her room and Joyce

told them she fell. She was not crying out or calling for help. They think that

she was trying to sit down and just missed the chair. I think that this is very

likely as I've seen her try to sit down by herself. She had no injuries but it

really scared her. The whole time I was with her yesterday, she talked about

falling and being scared. She started the new med regime last Friday and my

first thought was that the change was not working. Remember, the Dr.

discontinued the Seroquel and added Sinemet (SP). If she does well, he plans to

try and back off the Abilify. I sure hope it works and the horrible

hallucinations do not re-occur. Anyway, today she was smiling and seemed so much

better. She still has stiff fingers and very stiff legs. We were told that she

gets daily Physical Therapy for the body and Occupational Therapy for the

cognitive issues. MY QUESTION: Have any of you used Occupational Therapy for

your LO? Do you think that it was beneficial? ANOTHER QUESTION: Joyce

constantly has short monotimus humming sounds virtually all the time. Is this

part of the disease? Sometimes, everything is funny and she laughs all the

time. She did that today. Is this also part of the disease. Thank you all for

your help.

> Blessings,

> June Keeble

>

[Guest guest]

June, I haven't read any other responses to your question about physical

therapy. You may have already been answered very well.

For me, it has worked wonders. For LBD the person has to be able to understand

very simple instructions in order to do them. Part of it depends on how the

disease has progressed. After a certain point, I fail to see where it would

help. But, until that point then I would go for it, because it will keep her

stronger longer, and she will be able to walk or stand longer. It will also help

prevent falls.

My husband has fallen a lot, but hasn't broken anything.He sure does get some

bruises though. He won't exercise at all. During the exercise program I watch

him out of the corner of my eye, and he can't follow the instructor in a group

setting. A one on one would be different.

Maybe someone else will have a somewhat different insight into PT.

Best to you and your sister,

Love a lot, and smile,

Imogene

>

> Hello friends.

> I just visited my sister Joyce and she seems so much better today. Yesterday,

was not so good. As soon as I walked in on Monday, she told me she fell. When I

asked the nurses, they said they found Joyce on the floor of her room and Joyce

told them she fell. She was not crying out or calling for help. They think that

she was trying to sit down and just missed the chair. I think that this is very

likely as I've seen her try to sit down by herself. She had no injuries but it

really scared her. The whole time I was with her yesterday, she talked about

falling and being scared. She started the new med regime last Friday and my

first thought was that the change was not working. Remember, the Dr.

discontinued the Seroquel and added Sinemet (SP). If she does well, he plans to

try and back off the Abilify. I sure hope it works and the horrible

hallucinations do not re-occur. Anyway, today she was smiling and seemed so much

better. She still has stiff fingers and very stiff legs. We were told that she

gets daily Physical Therapy for the body and Occupational Therapy for the

cognitive issues. MY QUESTION: Have any of you used Occupational Therapy for

your LO? Do you think that it was beneficial? ANOTHER QUESTION: Joyce

constantly has short monotimus humming sounds virtually all the time. Is this

part of the disease? Sometimes, everything is funny and she laughs all the

time. She did that today. Is this also part of the disease. Thank you all for

your help.

> Blessings,

> June Keeble

>

[Guest guest]

dad would hold food in his mouth, he started that after he had a major drop in

his cognition after his hip surgery, he was very apt to keep it in his

mouth,even overnite, they lose the ability to swallow, we had a plan set up with

hospice, it helped dad remember to swallow and to keep him from bieng prone to

apiration pneumonia.  he would have to clear his throat three times after ever

3rd bite and that would make anthing that was in the wrong place go to where he

could swallow it and then swallow, he had to do that after drinking and after

eating, drinkning since he didnt drink as much we let him drink waht he wanted

and we did it 2 times instead of just once . and after every 3rd bite of food he

would  do teh clear teh throat and swallow. that seemed to help alot. but

nothing will stop it, we learned to check his mouth after each meal, but he did

bite me a few times. so becareful.  good luck and hugs. sharon

Daughter of Leonard whom was diagnosed in May 2004 and died of complicatons

*blood pressure started dropping and wouldn't recover* on Sept 25, 2005. He had

bad case of Dr Jekyl/Mr Hyde scenarios. He was showing hallucinations and

falling issues since prior to 1994. We moved in to take care of him Jan 19, 2003

and still live in his house. And in feb 2009, i have been diagonosed with 99%

probability of lbd.

Subject: My Sister Joyce

To: LBDcaregivers

Date: Monday, March 30, 2009, 9:18 PM

Hello everyone. I am so very confused about Joyce's problems. She seems to be a

little better since she took antibiotic for the UTI. She is walking a little

more and more. She doesn't sleep quite as much but still sleeps a lot. I spent

the morning with her today. I wanted to be with her when she ate lunch because

of what happened yesterday. We were sitting on the sofa and I noticed something

in her mouth. I started looking in her mouth and she had several large pieces of

food from her dinner, I guess, still in her mouth.. Do you think she is having

trouble swallowing? Also, it is so hard to get her to open her mouth. I had to

pry it open to see. It broke my heart. She had a pimiento cheese sandwich cut

into four little squares and she had no clue about how to pick up a piece and

put it in her mouth. She ate about 1/4 with me putting it into her hand and

guiding it to her mouth. She only took a few bites of a cookie and ate a few

potato chips. She drank

about two swallows of her iced tea. I took her some fruit flavored water and

had her sip on it all morning and she liked the flavor. She is still

hallucinating but not violently like she was before. She talks about the two

little boys we need to get. She says we can do it if we try. Her voice is still

very low. Can any of you tell me what you think? I feel like this is all about

LBD but I wonder about her not swallowing some of her food. She was not trying

to spit it out, I just happened to see it in her mouth when she got some on her

teeth. She has that blank stare and her eyes water sometime. Another thing - you

remember when I told you about her obsession with watches. She never mentions

them now and seems to have lost interest in everything.

Blessings to all,

June Keeble

[Guest guest]

June,

Every single bit of what you describe sounds familiar, like what has happened

with my mom. All a part of the loony Lewy Body mess.

She may need to continue or repeat the antibiotic. Have them check with a

urinalysis to see if the UTI is gone, or has come back.

Three years ago, my mom's eyes were closed, her teeth were clinched, you could

hardly force her to eat, (UTI's and pneumonia), and we thought she was dying.

Got her over the UTI's and pneumonia and adjusted her meds, and she had better

days.

Now she is almost 88, and we have wonderful conversations about when I was

young, when she was young, etc. She has terrible hallucinations, but we can

discuss them. She knows certain types are not real, such as the accidents she

sees with people being killed. She still has trouble with thinking every man

who walks by and doesn't speak is my brother, and she wonders why he doesn't

care about her any more. That is rough. (He's 800 miles away, but she can't

compute that.)

The low voice volume is a Lewy thing, too. Some times I have to put my head

down near her mouth to hear her.

Sleeping a lot is normal, too.

Swallowing difficulty is normal.

Eyes watering are normal. Sometimes Parkinson's-like dripping from mouth, nose,

eyes " crying " . My mom has a Kleenex all the time because she has to wipe her

face so much.

There is so much bad and so much good. Do your best to make your time with her

pleasant for her. Realize you can't figure everything out. Just do what you

can, and that has to be good enough.

Don't feel like you have to do everything right, because it's not possible to

even know what that is.

Take care, and get some rest.

Gurganus

Wilmington NC

>

> Hello everyone. I am so very confused about Joyce's problems. She seems to be

a little better since she took antibiotic for the UTI. She is walking a little

more and more. She doesn't sleep quite as much but still sleeps a lot. I spent

the morning with her today. I wanted to be with her when she ate lunch because

of what happened yesterday. We were sitting on the sofa and I noticed something

in her mouth. I started looking in her mouth and she had several large pieces of

food from her dinner, I guess, still in her mouth. Do you think she is having

trouble swallowing? Also, it is so hard to get her to open her mouth. I had to

pry it open to see. It broke my heart. She had a pimiento cheese sandwich cut

into four little squares and she had no clue about how to pick up a piece and

put it in her mouth. She ate about 1/4 with me putting it into her hand and

guiding it to her mouth. She only took a few bites of a cookie and ate a few

potato chips. She drank about two swallows of her iced tea. I took her some

fruit flavored water and had her sip on it all morning and she liked the flavor.

She is still hallucinating but not violently like she was before. She talks

about the two little boys we need to get. She says we can do it if we try. Her

voice is still very low. Can any of you tell me what you think? I feel like this

is all about LBD but I wonder about her not swallowing some of her food. She was

not trying to spit it out, I just happened to see it in her mouth when she got

some on her teeth. She has that blank stare and her eyes water sometime.

Another thing - you remember when I told you about her obsession with watches.

She never mentions them now and seems to have lost interest in everything.

> Blessings to all,

> June Keeble

>

[Guest guest]

 

Sometimes the food packs in the throat, and they can't get it up or down.  My

husband did that toward the end, and you could see a swelling in the throat

area.  I used to try to massage it down, too.  This brings back the memories of

trying the get him to open his mouth so I could feed him and also when he would

clamp down on the fork and wouldn't let you take it out.  It wasn't long before

the packing that the aspiration started.  June C

Subject: Re:My Sister Joyce

To: LBDcaregivers

Date: Tuesday, March 31, 2009, 9:24 AM

My husband, Ray, pockets his food. The danger is that they pocket the food

(or drink) and end up aspirating something onto their lungs. Who ever is

feeding the patient anything, must recognize that is happening. It happens a

lot with Ray so we have to watch carefully and remind him to swallow and

chew. I can usually tell from the way he is holding his mouth but he can

stash alot if one is not careful. He also, locks his mouth and teeth. When

I can get him to open his mouth, I feed him just a bit, wait for him to chew

and then try to help wash it down with a sip of liquid. Often, I ask

him--Ray, Please chew your food or Please swallow and promote the swallow by

rubbing downward on his throat. Sometimes it actually works!! I think this

is the progression of LBD. I also see the stare and watery eyes, as well. He

has always had a terrific appetite and really enjoyed food so it is very sad

to watch. I notice he does not focus on the TV as well as he did just a

short time ago. Nothing much for him to enjoy anymore. Sad. Good luck with

your sister but I hope you have other interests in your life. It gets very

depressing to dwell on the LBD patient especially if you have nothing else

to attend to. Love, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

june,

i am so glad that they have her on 10 days, many antibiotics 'cure' with only 5

or 7 days, but our lbders tend to get uti's frequently, so 10 days is good, make

sure the infection is gone and shouldnt come back and repeatedly and become

immune and then the drugs originally given wont help anymore. they now have me

on 14 days of anitbiotics at a time just for that reason. 

 

and as for my dad his utis it was usually about 1 week before we saw improvement

in his lbd, and the more ofent he had them the longer it took for him to boucne

back. 

good luck and hugs. sharon

Daughter of Leonard whom was diagnosed in May 2004 and died of complicatons

*blood pressure started dropping and wouldn't recover* on Sept 25, 2005. He had

bad case of Dr Jekyl/Mr Hyde scenarios. He was showing hallucinations and

falling issues since prior to 1994. We moved in to take care of him Jan 19, 2003

and still live in his house. And in feb 2009, i have been diagonosed with 99%

probability of lbd.

Subject: My Sister Joyce

To: LBDcaregivers

Date: Tuesday, March 31, 2009, 8:52 PM

Hi, . Your post meant so much to me. As far as I know, she is still on the

antibiotic for UTI. She started it last Thursday and he gave her a two week

supply. I saw her today and I could not get her to eat or drink. She is still

sleeping a lot. I plan to be with her everyday during her lunch time so that I

can try to get her to eat. I only live about 15 minutes from Wesley Woods where

she is in the Memory Unit. Thanks again for you encouragement. I'll try to

remember that I have limitations and, as you said, can't do everything. This is

the first family terminal illness I've had to deal with and I just want to be

able to read the crystal ball and see what's coming next. My parents both died

suddenly and so did my husband's. Goodnight and thanks.

Blessings,

June Keeble

[Guest guest]

I don't think it is a good idea because it will confuse her as to where she is

at any one time. Mom's doctor advised that Mom and I not go between my home and

hers because it is too confusing. After that we didn't, but Mom would still go

in the wrong direction to use the bathroom in her home where she lived for 34

years because she also knew what side of the living room the bathroom was in my

home.

Good Luck!

>

> Hello everyone. I've not posted for several days because I just don't know

what to say. I think the doctor is about to approve Joyce for hospice but I'm

not sure. Her husband, Clyde, has no idea what hospice is. I've taken him

literature but he stills seems to be in the dark. I doubt that he even read the

material. Joyce is still not eating very much and she seems to be very weak. She

drinks the flavored water that I took her and that's good. She has minor

hallucinations, not scary ones. Her nose constantly drips and she is pocketing

food badly. One thing I don't understand: For some reason, Clyde takes Joyce

home about one afternoon a week, although the doctor has advised against it.

When she returns to Wesley Woods, all she talks about is when she can go home

again. Personally, I wish he wouldn't do that but it's his decision. I realize

that he is doing this for himself rather than for Joyce. When I saw her

yesterday, I asked her if she had fun when Clyde took her home and she replied,

" sort of. " I son't know what that means. Can anyone give me their thoughts

regarding taking loved ones home for visits and then back to the NH?

> Thanks,

> June Keeble

>

[Guest guest]

June K,

I was lucky. Mom didn't ask to go home very often. And I would take her for

rides outside the nh. But I didn't bring her to my house. I was afraid she

would refuse to go back. And she was in a wheelchair by then. She was only in

the nh for a year, but I never did bring her to the house.

Just my fears.

Hugs,

Donna R

Caregiver for Mom for 3

years and 4th year in a nh.

(In MI)

She was almost 89 when she

died in '02. No dx other

than mine.

My Sister Joyce

Hello everyone. I've not posted for several days because I just don't know what

to say. I think the doctor is about to approve Joyce for hospice but I'm not

sure. Her husband, Clyde, has no idea what hospice is. I've taken him literature

but he stills seems to be in the dark. I doubt that he even read the material.

Joyce is still not eating very much and she seems to be very weak. She drinks

the flavored water that I took her and that's good. She has minor

hallucinations, not scary ones. Her nose constantly drips and she is pocketing

food badly. One thing I don't understand: For some reason, Clyde takes Joyce

home about one afternoon a week, although the doctor has advised against it.

When she returns to Wesley Woods, all she talks about is when she can go home

again. Personally, I wish he wouldn't do that but it's his decision. I realize

that he is doing this for himself rather than for Joyce. When I saw her

yesterday, I asked her if she had fun when Clyde took her home and she replied,

" sort of. " I son't know what that means. Can anyone give me their thoughts

regarding taking loved ones home for visits and then back to the NH?

Thanks,

June Keeble

[Guest guest]

One of the thoughest things I go threw on a daily basis with my Dad since this

all started is his begging me every night after dinner to take him home.

Unfortunatley, I can not. He has told me he hates me, I am a disappointment to

him and that I do not love him anymore. It is very tough to hear these things

because he never would have said them before the LBD and I know he doesn't mean

any of it. I don't think taking your LO home from the NH after they have gotten

" settled " there is a good idea. I know in my heart I would have a seriously

difficult time getting my Dad to go back, and it would not be good for my Mom as

she would feel even more guilty about not being able to keep him there.

Can the NH staff step in and help you with Joyce and your feelings and concerns?

Jayne in VT

Daughter of Bob diagnosed in Jan. 2009

>

> June K,

>

> I was lucky. Mom didn't ask to go home very often. And I would take her for

rides outside the nh. But I didn't bring her to my house. I was afraid she

would refuse to go back. And she was in a wheelchair by then. She was only in

the nh for a year, but I never did bring her to the house.

>

> Just my fears.

>

> Hugs,

>

> Donna R

>

>

> Caregiver for Mom for 3

> years and 4th year in a nh.

> (In MI)

> She was almost 89 when she

> died in '02. No dx other

> than mine.

>

>

> My Sister Joyce

>

> Hello everyone. I've not posted for several days because I just don't know

what to say. I think the doctor is about to approve Joyce for hospice but I'm

not sure. Her husband, Clyde, has no idea what hospice is. I've taken him

literature but he stills seems to be in the dark. I doubt that he even read the

material. Joyce is still not eating very much and she seems to be very weak. She

drinks the flavored water that I took her and that's good. She has minor

hallucinations, not scary ones. Her nose constantly drips and she is pocketing

food badly. One thing I don't understand: For some reason, Clyde takes Joyce

home about one afternoon a week, although the doctor has advised against it.

When she returns to Wesley Woods, all she talks about is when she can go home

again. Personally, I wish he wouldn't do that but it's his decision. I realize

that he is doing this for himself rather than for Joyce. When I saw her

yesterday, I asked her if she had fun when Clyde took her home and she replied,

" sort of. " I son't know what that means. Can anyone give me their thoughts

regarding taking loved ones home for visits and then back to the NH?

> Thanks,

> June Keeble

>

>

>

>

>

[Guest guest]

Hi Jayne,

Mom always asked for me to take her home (and we lived in her home), more in the

evenings than afternoons, and I don't think it ever happened in the morning,

though. It is part of LBD, called Capgras Syndrome. So, I would say OK,then we

would get in the car and take a drive and then come back home and it was OK. I

had to be careful to take the same route every time or else she would let me

know that I didn't turn at the right corner. With Capgras Syndrom LOs think that

they have two identical homes, two identical spouses, two identical children,

two identical siblings,etc.

However, in your case, with your dad in a nh, I'm not sure if it work out so

easily. Do any other LOs have this problem to respond to Jayne about?

> >

> > June K,

> >

> > I was lucky. Mom didn't ask to go home very often. And I would take her

for rides outside the nh. But I didn't bring her to my house. I was afraid she

would refuse to go back. And she was in a wheelchair by then. She was only in

the nh for a year, but I never did bring her to the house.

> >

> > Just my fears.

> >

> > Hugs,

> >

> > Donna R

> >

> >

> > Caregiver for Mom for 3

> > years and 4th year in a nh.

> > (In MI)

> > She was almost 89 when she

> > died in '02. No dx other

> > than mine.

> >

> >

> > My Sister Joyce

> >

> > Hello everyone. I've not posted for several days because I just don't know

what to say. I think the doctor is about to approve Joyce for hospice but I'm

not sure. Her husband, Clyde, has no idea what hospice is. I've taken him

literature but he stills seems to be in the dark. I doubt that he even read the

material. Joyce is still not eating very much and she seems to be very weak. She

drinks the flavored water that I took her and that's good. She has minor

hallucinations, not scary ones. Her nose constantly drips and she is pocketing

food badly. One thing I don't understand: For some reason, Clyde takes Joyce

home about one afternoon a week, although the doctor has advised against it.

When she returns to Wesley Woods, all she talks about is when she can go home

again. Personally, I wish he wouldn't do that but it's his decision. I realize

that he is doing this for himself rather than for Joyce. When I saw her

yesterday, I asked her if she had fun when Clyde took her home and she replied,

" sort of. " I son't know what that means. Can anyone give me their thoughts

regarding taking loved ones home for visits and then back to the NH?

> > Thanks,

> > June Keeble

> >

> >

> >

> >

> >

[Guest guest]

Dear June,

 

About taking LOs home: Is Joyce fully aware that she is not at home?  I work for

a senior care organization, which includes a long-term care center (NH). The

standard for deciding if/should a resident go home is: can she physically

tolerate the trip? Does the emotional benefit outweight the potential

difficulty? There's no one-size fits all answer: it depends totally on the needs

of the resident and the family. Many of our residents, including those with

dementia, do fine going home. Yes, it can be painful for them and their

families, but for many, again even those with dementia, so is knowing they have

a home but are not allowed to go to it. My mom's MD told me years ago that I

should remember mom's cognition is failing, but her feelings are just like

anyone else's. And so I've made every decision about her care with that in mind.

She lived in one place for 60 years, so it's very normal she wants to go back.

Andwhile my dad was alive, it was very

normal he would want to take her there.

 

Some of our LOs will become distraught about having to go back to the NH after

being at home. Not all will: it is an extremely person-by-person decision. And,

even if it is painful, being at home with family can be very reassuring. We take

mom to my home (her's is several hundred miles away and she couldn't physically

manage the trip) every couple of months - and talk about the visits a lot before

and after. She knows her home is far away, but likes being at mine - confusion

and all. Planning these visits as special outings to a favorite place seem to

help her overall mood in between times.  Sometimes she knows where she is,

sometimes not.

 

Finally, just because a person doesn't get to go home doesn't mean they won't

ask or don't want to go. Some of our residents whose families could/should take

them don't because they are scared or anxious about the outcome. And those

residents suffer with that. Others go home and come back as if it doesn't affect

them one way or the other. So unless there is a safety reason for not going out,

each family - those who know the LO best - must make its own particular

decision.

 

Please let us know how Joyce is doing. If she's not eating much and pocketing

food, is the NH being careful she gets enough nutriton and liquids in other

forms? June, I'm keeping all of you in my prayers.

 

Lin

Subject: Re: My Sister Joyce

To: LBDcaregivers

Date: Friday, April 17, 2009, 9:39 PM

I don't think it is a good idea because it will confuse her as to where she

is at any one time. Mom's doctor advised that Mom and I not go between my

home and hers because it is too confusing. After that we didn't, but Mom

would still go in the wrong direction to use the bathroom in her home where she

lived for 34 years because she also knew what side of the living room the

bathroom was in my home.

Good Luck!

>

> Hello everyone. I've not posted for several days because I just

don't know what to say. I think the doctor is about to approve Joyce for

hospice but I'm not sure. Her husband, Clyde, has no idea what hospice is.

I've taken him literature but he stills seems to be in the dark. I doubt

that he even read the material. Joyce is still not eating very much and she

seems to be very weak. She drinks the flavored water that I took her and

that's good. She has minor hallucinations, not scary ones. Her nose

constantly drips and she is pocketing food badly. One thing I don't

understand: For some reason, Clyde takes Joyce home about one afternoon a week,

although the doctor has advised against it. When she returns to Wesley Woods,

all she talks about is when she can go home again. Personally, I wish he

wouldn't do that but it's his decision. I realize that he is doing this

for himself rather than for Joyce. When I saw her yesterday, I asked her if she

had fun when Clyde took her home and she replied, " sort of. " I

son't know what that means. Can anyone give me their thoughts regarding

taking loved ones home for visits and then back to the NH?

> Thanks,

> June Keeble

>

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

Welcome to LBDcaregivers.

[Guest guest]

Hello everyone. I spent most of the entire day with Joyce today. Something

happened that really scared me. She was asleep in her recliner as she usually

is. When lunch time came, I could not wake her up. I tried everything - patted

her cheeks, washed face with cold water, stood her up and she just would not

wake up. I screamed for the CNAs and was on my way down the hall to get the DON

and she finally woke up. She is not on any new meds and nothing has changed on

her schedule. She wouldn't eat any lunch but did drink some flavored water. She

remained lethargic the entire day and seemed to be very weak. Also, she sleeps

with her mouth wide open. Can any of you tell me what all this means? We'll

see the doctor on Monday if she does OK during the weekend. I'll be waiting for

your reply.

Love,

June Keeble

[Guest guest]

June K,

We have heard this a lot during the time we have been on here. Jan C has had

Jim in these coma like episodes and some for a a considerable amount of time.

The first time must be scary. But I haven't heard of any answers , I don't

think. They have been called many things. Most just do what you did and our

LOs wake up on their own. Some take a while longer than others.

That isn't something I had to deal with and it would be nice to learn what the

secret is and how to wake them up. But it sure isn't unheard of.

Hugs,

Donna R

Caregiver for Mom for 3

years and 4th year in a nh.

(In MI)

She was almost 89 when she

died in '02. No dx other

than mine.

My Sister Joyce

Hello everyone. I spent most of the entire day with Joyce today. Something

happened that really scared me. She was asleep in her recliner as she usually

is. When lunch time came, I could not wake her up. I tried everything - patted

her cheeks, washed face with cold water, stood her up and she just would not

wake up. I screamed for the CNAs and was on my way down the hall to get the DON

and she finally woke up. She is not on any new meds and nothing has changed on

her schedule. She wouldn't eat any lunch but did drink some flavored water. She

remained lethargic the entire day and seemed to be very weak. Also, she sleeps

with her mouth wide open. Can any of you tell me what all this means? We'll

see the doctor on Monday if she does OK during the weekend. I'll be waiting for

your reply.

Love,

June Keeble

[Guest guest]

Hello June-

My father has experienced a couple of the episodes you mention where he is

unresponsive and can't be awakened. The first time Mom called the rescue squad

and he was transported to the hospital where nothing was found " wrong " other

than slight dehydration. He stayed 3 days in the hospital and 3 weeks in a NH

Rehab unit until Mom requested to bring him home. The second time it was in the

morning when the health aide arrived, and he again was transported to the ER.

Dad came back to consciousness about 45 minutes into the episode. We had an

excellent, understanding doc who, after CT scans and testing showed no cause,

said that if Dad could walk as well as usual we could take him home. Dad eagerly

complied.

So my mother and I talked and decided that in the future, we will have a " wait

and see " response. Dad doesn't want any life support or procedures anyway, so if

he is at home when something happens that's where he wants to be.

These episodes have helped our family talk about how much intervention is

appropriate in different situations, and are helpful as steps in dealing with

what lies ahead.

A fellow traveler on this LBD caregiver journey-

Carol

>

> Hello everyone. I spent most of the entire day with Joyce today. Something

happened that really scared me. She was asleep in her recliner as she usually

is. When lunch time came, I could not wake her up. I tried everything - patted

her cheeks, washed face with cold water, stood her up and she just would not

wake up. I screamed for the CNAs and was on my way down the hall to get the DON

and she finally woke up. She is not on any new meds and nothing has changed on

her schedule. She wouldn't eat any lunch but did drink some flavored water. She

remained lethargic the entire day and seemed to be very weak. Also, she sleeps

with her mouth wide open. Can any of you tell me what all this means? We'll

see the doctor on Monday if she does OK during the weekend. I'll be waiting for

your reply.

> Love,

> June Keeble

>

[Guest guest]

Ray had a few episodes like that. Before the nursing home last year, he was

in the hospital and slept for 2 days and nothing would wake him. Then once

or twice in the nursing home, we couldn't wake him but not for so long. He

never seemed to be any worse or have problems when he came out of it. I

thought it was a form of escape for him. It may have been dehydration since

he would rip IVs out as fast as they put them in. Good luck, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Dear June,

My thoughts and prayers are with you. Every time I see Mom, I want to cry, and

there are times that I have to go into the bathroom, shut the door, and let it

all out (I no longer wear mascara when I visit). Life can be so unfair

sometimes... but we have to be strong for our loved ones. My MOm's decline has

been very subtle the last couple of years. I hope we all have the strength to

endure what's ahead.

Sending you love,

Helene

>

> Hello friends. I just couldn't decide whether to write of not but I found

that I should do something. I spent the afternoon with Joyce and left Wesley

Woods in tears. I know most of you have gone through things like this also. She

was begging me to stay with her. She seems to be afraid of something but she

doesn't know what. I turned on all the lights and lamps in her unit She kept

saying that she was going to " get dead " and didn't say dying. She still is not

eating but is drinking Ensure and flavored water. She still is stiff and canot

get up and down by herself and can't walk by herself. I was so very heartbroken

tonight when I had to leave, I went to my favorite CNA and told her that Joyce

did not want me to leave and I was crying. The CNA gave me a big hug and told

me that they would take good care of Joyce and would have her laughing by

bedtime. I am so thankful for the wonderful facility that is now Joyce's home.

The whole time I was there, one of her eyes was very teary. I couldn't see any

problem but I think I read something about this happening with LBD patients.

The doctor will see Joyce on Wednesday and will make a decision about hospice.

Thank you for listening. I feel better already and can go to sleep now.

> Love,

> June

>

[Guest guest]

Darling Helene, I am so sorry. I know exactly what you are saying. I get

unbearable days, and yet, I am still bearing it. I hope you are able to do

the same.

You may have read, Don is doing better right now.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 5/3/2009 7:09:35 A.M. Central Daylight Time,

hgm54@... writes:

Dear June,

My thoughts and prayers are with you. Every time I see Mom, I want to

cry, and there are times that I have to go into the bathroom, shut the door,

and let it all out (I no longer wear mascara when I visit). Life can be so

unfair sometimes... but we have to be strong for our loved ones. My MOm's

decline has been very subtle the last couple of years. I hope we all have

the strength to endure what's ahead.

Sending you love,

Helene

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[Guest guest]

Ray's eyes, esp. one, teared a lot in the last phase. I never was sure if he

was sad or it was an allergy or something. I am so sorry you are going

through this with your sister. You will never be sorry that you are giving

your time and love.

Hugs, Leona

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. So far, so good! Hardest thing I have

ever done in my life, however. 3/19/09 transferred to Samaritan Keep NH in

Watertown, NY closer to home. He passed peacefully at 5:18 am on April 14,

2009. I am handling it OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

June,

I have to agree with the others speaking up about the meds. Get her off of

them. Please talk to the doctor about this when you see him. I believe that he

probably had her best interest at heart, but doesn't maybe understand about how

these meds effect people with LBD. I am beginning to think that these bouts with

severe hallucinations & delusions are " normal " for some, and treating them with

certain meds is not a wise choice. I think that the hallucinations, etc would

have stopped without the meds that the doctor introduced to stop them, but

because they stopped, the doctor probably feels they were a wise choice and are

working well for her. My mother went through a period of severe hallucinations

and delusions (two different times actually). The last time, doctors placed her

on Seroquel & Haldol. - Very bad for her. I had to insist - quite loudly- that

she be removed from these two meds. Although the hallucinations stopped after

she started taking Seroquel & Haldol, they were causing severe problems with her

ability to walk, talk, think, etc. She is now on Aricept. After stopping those

meds and starting the Aricept, we saw a huge improvement. But, as you all know,

LBD is not problem free. She now insists that there is nothing wrong with her

and that she should be allowed to drive, live by herself, etc (if she could see

how she really is, she would have a fit - literally... . She is not able to

even brush her hair properly, etc, but won't or can't admit it.). She has the

worst case of denial about her condition that I have ever seen. She refuses to

go back to the neurologist because he tried to explain to her why she can't go

out and get a job, etc. Her refusal to admit that there is anything wrong causes

great stress (on my part) and a few loud arguments because she keeps saying that

I am keeping her held like a prisoner, etc. - but that is a whole other story.

Blessings to you and yours,

April