My Sister Joyce

[Guest guest]

June K,

I love these and are sure glad you shared them. They are so true. If we could

only understand them earlier. I know what they mean now, but it took me a

while to " get it. "

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 again.

The following was printed in Joyce's Wesley Woods newsletter and I thought it

was so good. You may have seen it before but I thought I would share it because

it really helped me.

THE TEN RULES WHEN CARING FOR A PERSON WITH DEMENTIA:

1. Never argue.

2. Logic and reason do not exist.

3. Lying is acceptable.

4. You are not who you think you are - you are who they think you are.

5. Never take anything personally.

6. Old memories are the best.

7. Learning something new is not important.

8. Being loved/accepted is important.

9. Have no expectations.

And rule number 10 is critical if you, the caregiver, are to survive your

journey with your loved one with dementia.

10. Take care of yourself, socialize, ask for help and let people help you and

find a support group.

I have found the greatest support group of all. This caregiver's support group!

Love,

June Keeble

[Guest guest]

June K,

I don't know if you can, but I am wondering by your description, if they are

giving her a med that you don't know about. Mom would do that and I would find

out they were giving her meds before lunch or one the nurses had made and error

and done to much med or the MD thought he would address a problem without

letting me know.

It just seems odd that she can be fine one day and that far down the next.

There has to be something going on?

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, it's me again.

After seeing how Joyce was today when I visited, I returned tonight around six

o'clock to check on her. When I arrived, the nurses had her in the living room

of the unit, sitting in a recliner type chair with her legs extended on the

chair. They put her in the chair because she couldn't get out of it and they

didn't want her to fall. She was leaning to the right and was asleep. When I

walked over to her, she immediately woke up and said, " I can't do this anymore. "

I asked if she wanted to go to her room and she said " yes " . A nurse and I lifted

her from the chair and placed her in a wheelchair to take her to her room. We

sat her down on her sofa and she was so tired and weak. Speaking of the whispery

voice - she was much, much worse and barely spoke at all. She was difinitely

leaning to the right and I got pillows from her bed to help prop her up. She

felt awfully warm and her face was flushed. I asked the nurse to check her temp

and it was normal. I read somewhere, maybe on this board, that LBD/ Parkinson

patients often feel warm. I asked about a UTI and the doctor will check

everything in the morning. They said that she definitely was not constipated.

She has almost stopped eating. She is so incredibly stiff and tremors are worse.

The nurse asked her if she was hurting anywhere and she said, " yes " . The nurse

asked where she was hurting and Joyce replied, " all over. " All of you have

warned me about the Roller Coaster ride. It is hard to believe that she and I

walked to the girt shop yesterday (about the length of a football field) and she

could walk fine. Today, she cannot walk at all and has to use a wheel chair.

Boy, that is fast! Do any of you know what might have caused such a sudden

change? I stayed with her until the nurses put her to bed. I left the room while

she was preparing for bed. When I returned, she was lying in the middle of her

double bed, head resting on her pillows, and sound asleep. She looked so

peaceful. That is how I left her. This is the lowest she has been since she was

diagnosed. Any suggestions?

Love to all,

June Keeble

[Guest guest]

Dear Donna,

YOu have echoed the exact same thoughts that went through my mind when I read

this....

Sending early hugs from NY,

Helene

(Mom, 75, about 9 years into LBD, in Bronx, NY)

 

Subject: Re: My Sister Joyce

To: LBDcaregivers

Date: Monday, March 23, 2009, 12:31 AM

June K,

I love these and are sure glad you shared them. They are so true. If we could

only understand them earlier. I know what they mean now, but it took me a while

to " get it. "

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 again.

The following was printed in Joyce's Wesley Woods newsletter and I thought it

was so good. You may have seen it before but I thought I would share it because

it really helped me.

THE TEN RULES WHEN CARING FOR A PERSON WITH DEMENTIA:

1. Never argue.

2. Logic and reason do not exist.

3. Lying is acceptable.

4. You are not who you think you are - you are who they think you are.

5. Never take anything personally.

6. Old memories are the best.

7. Learning something new is not important.

8. Being loved/accepted is important.

9. Have no expectations.

And rule number 10 is critical if you, the caregiver, are to survive your

journey with your loved one with dementia.

10. Take care of yourself, socialize, ask for help and let people help you and

find a support group.

I have found the greatest support group of all. This caregiver's support group!

Love,

June Keeble

[Guest guest]

 

To June from another June - as hard as it is to face, we know this is a disease

we can't cure, and if he gets pleasure in bringing her chocolate and she gets

pleasure in eating it, why not???  Having extra weight in this disease probably

won't hurt, as most end up losing a lot of weight in the end.  I say, let her

have anything she wants.  June C.

Subject: My Sister Joyce

To: LBDcaregivers

Date: Friday, March 27, 2009, 9:58 PM

Hello everyone. I just wanted to let you all know that Joyce seems to be

slipping. Although she can now stand and walk with assistance, she is still

very, very weak. She rarely has the tremors. She still speaks in a whisper and

her sentences are just a few words. She is bearly eating. Since joining this

support group, I've learned so much from you. I didn't like the way she was

acting and I remembered what you've told me about UTI. Sure enough, her doctor

diagnosed a UTI and started her on antibiotics on Thursday and she may be a

little better. I quizzed the CNAs about her urine and the CNA that I really

trust said that it is getting better, not as dark. Since she is eating very

little, I've also cautioned them about dehydration. Tomorrow, I plan to take her

some small bottles of juice and some Ensure. She has a small dorm refrigerator

in her little kitchen area. I HAVE A QUESTION - Before going to Wesley Woods,

Joyce never ate sweets. She was very

conscious about keeping her weight down. Her husband, Clyde, knew that she

loved dark chocolate. He comes to see her every day and brings her dark

chocolate and feeds it to her. Other than weight gain (she has gone from size 6

to size 12 since last August), do any of you think that the chocolate is bad for

LBD patients. I know it is bad for urinary tract because of the caffeine in it

and I mentioned this to Clyde. I feel so sorry for him. They have been married

58 years and this is the first time they've been separated. I think bringing the

chocolate helps relieve some of the guilt he has about bringing her to Wesley

Woods. We've constantly told him that he had no choice. Please let me know if

you think the chocolate is bad for LBD.

Love to all,

June Keeble

[Guest guest]

June K.,

I think the antibiotics do affect the memory but that will get better when they

are done giving them to her.

I think they call it " pocketing " food when they just don't remember to swallow

it. It is more like they just forget to finish eating it. I have heard of it

but have no experience with it. You might check on eating problems in the

files.

Maybe someone else here will have some more ideas.

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 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]

Dear June K,

My Mom hasn't kept food in her mounth, so I don't know what to tell you.  I hope

that things improve for her, and that she enjoys her watches again.  Have you

tried to re-ignite her passion for that by bringing one to her?

Sending you many hugs,

Helene

 

Subject: My Sister Joyce

To: LBDcaregivers

Date: Tuesday, March 31, 2009, 12:18 AM

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]

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]

Will she eat if you ask her what she would like to have and then get it for her?

My mom went a few weeks where she ate barely anything. Then the last time that

she was in the hospital the doctor told her that if she wanted to live that she

should eat when I tell her to. That night when we were home she ate a complete

meal including dessert. I don't know if maybe she thought that by eating she

would get better??? Just a couple of thoughts.

>

> Hello everyone. I just want to know if anyone has any suggestions on how I can

get Joyce to eat. I go to Wesley Woods everyday to try to get her to eat lunch

or to feed her. She has been pretty good about picking up her food after I cut

it into small pieces but lately she just refuses to eat. Last week she kept

clearing her throat as she ate and I was so afraid that she was choking. Today,

while drinking iced tea, she got choked and coughed for several minutes. I know

that she is pocketing food because I can see it in her mouth (when I can get it

opened.) The drippy nose was very evident today. The nurse came into her room

this afternoon to give her a pill and we had a terrible time getting her teeth

apart enough to get the pill in her mouth. I think she swallowed it OK or it

dissolved in her mouth. She drank a cup of grape juice after taking the pill.

She has given up so many of the things she always loved. She no longer wears

bracelets and watches that she formerly wanted all the time. She has even given

up her desire for chocolate. We will see the doctor Wednesday and I can't wait

to see what the next move with Joyce will be. Today, the " Lewy Lean " was very

prevalent and after lunch, the nurse propped her up on the sofa with pillows.

She couldn't even turn her head to look at me, although she tried. Walking is

almost impossible but with the nurses holding her up she tries very hard to

straighten her legs out and can walk a few steps. What do you all think?

> Love,

> June Keeble

>

[Guest guest]

June K,

Last year Mom's family doctor requested hospice for Mom. We were asked which

hospice agency we preferred.

Hospice continued Mom on all the same medications she was taking at the time of

admission to the program, with the caveat being that they only pay for and

deliver the meds that relate to her reason for being on hospice (LBD), as well

as any hospice, palliative care medications. That means they bring the Seroquel

as well as Tylenol and laxatives. (Please note: we are caring for my mother in

my home.)

When Mom needs other meds (Nystatin for a yeast infection, Augmentin for

pneumonia)I have to pick those up myself at the local pharmacy and pay for them

via Mom's regular pharmacy insurance plan.

Hospice is wonderful. We have wonderful nurses and aides who are so kind and

have taught and supported us. Right now they send an RN once a week to do an

assessment, as well as a bath aide three times a week to give Mom a bedbath.

This schedule is flexible based on the agency's scheduling and the patient's

needs.

You're doing a wonderful job caring for your sister.

Peace and Wisdom,

Sheila

>

> June K,

>

> I would ask the MD if she went on Hospice what meds would they continue to

give her. I think it depends on the nh. And I think it depends on how vocal

you are. Mom didn't go off any meds when Hospice came in. And you can always

go off Hospice if you want her treated and they won't. Hospice treated Mom's

thrush in her mouth, even though she was on Hospice.

>

> It was painful for her to eat and I insisted. It is suppose to be comfort

care. So what ever makes them comfortable. Mom wasn't on any of the dementia

drugs, so I don't know about that.

>

> 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 friends. The situation with my sister, Joyce, is not getting any better.

She only has one daughter and she loves her mother very much but is having

problems accepting the fact that Joyce will never again be well. She hasn't seen

Joyce in two weeks and says she just can't stand to go. I'm not surprised

because she has always been loved so much by her Mom and Dad that they sheltered

her too much. She is worried about what she would do if she lost her Mom and her

Dad also. She is worried about durable Power of Attorney, Wills, etc. She has

a very loving and patient husband who is doing everything he can to help her.

Thhey only have one son and he is in the Air Force now serving in Iraq. Her Dad

is carrying the burden of his wife with LBD and his only daughter with bouts of

uncontrollable crying. She also said she is depressed because she can't make

everything right for her Mom. She is seeing a doctor and getting treatment. I've

talked to her and volunteered to be her " substitute " Mom if she needs me. Joyce

seems to slip a little each day. She doesn't know about her daughter and never

mentions her to me. Still pocketing food badly and not eating very much at all.

She cannot get up and down by herself but once she is up, she can walk a little

bit holding on to me. The doctor will see her tomorrow and I will be there,

along with her husband. QUESTIONS: I don't know if it is time for hospice or

not. If he suggests hospice, when they go strictly to palliative care does that

mean she will come off all the meds she is on and just get meds to keep her

comfortable? Or, will she get pain meds and remain on what she is taking now

also? Can any of you suggest any questions I should ask her doctor? Thank you

so much for your help.

> Love,

> June Keeble

>

>

>

>

>

[Guest guest]

Dear June,

 

Oh, my - your entire family is certainly shouldering so many difficult

situations. I'm sure all of us are keeping you in our thoughts and prayers.

 

Hospice:    I'm not a clinician, but do work in a senior care organization.

Personally (both my dad and uncle were on hospice) and professionally, I

subscribe to the original hospice/palliative care philosophy. Some

agencies differ in practice, but " in general, " hospice can step in whenever a

disease is terminal - not only at the last days or weeks of life. (For example,

we have residents on hospice who are expected to live another several years.)

It's a wonderful service when a person is house- or facility-bound; the care is

person-centered, not only medical-model; all current meds are given; any new

problems are treated; the focus is on quality-of-life for the person and the

family (so counseling, spiritual care, financial planning referrrals, etc. are

offered to the whole family); and staff is available 24/7. Some hospice programs

work in tandem with the referring MD, while some require that the patient

becomes  " theirs. "  

 

Your Niece:    Joyce's daughter might find talking with a H/PC staff helpful. I

don't know her particular issues and of course wouldn't guess at what she's

feeling, but I can sympathize with her avoiding her mom. Some of us adult kids

feel tremendous grief, impotence and loss about losing a parent while they are

still living. I went through this myself for awhile, with some weird version of

guilt thrown in to make it all worse. And worry about her son must make

everything that's hard even harder. She is fortunate to have you loving and

supporting her - as is your sister.

 

Meds and Hospice:    Donna's mom's experience with meds and H/PC is what you

should expect: they should give whatever meds are needed - not just pain meds or

sedatives. If a new problem arises, they will treat it, not ignore it. For

example, if someone has cancer, they will give the cancer meds. If the person is

also diabetic, they'll give insulin. And if the person gets pneumonia, they'll

treat that, too. The will not try to " cure " the cancer if it's deemed incurable,

and they won't put the person on study meds. You should expect nothing less from

a good H/PC agency, but like Donna suggested, asK - there are always the

exceptions out there and you sure wouldn't want that kind of surprise. 

 

Questions for the MD:    It's good you'll be there for the doctor's visit. No

doubt he or she will investigate why your sister seems to be  " slipping " on a

daily basis. Here's the kind of questions we recommend our families ask on

behalf of their LOs:    Determine if there there's anything new with her

physical being? Any hidden infections? Request a complete physical and run all

bloods to rule out obvious problems. What meds is she on? What are they for? Is

she taking an LBD-specific med? How are the meds affecting her? Should any meds

be decreased, increased, discontinued, retimed, redosed? (Meds evals are

typically done in a NH every 3 months - you can always request one, too.) Is she

getting sufficient exercise, including passive? Does she get sufficient

socializiation? How's her dental health? MD may want to order nutrition

supplements (if that's not being done) to ensure adequate healthy calories. 

 

June, this is a long message, and I apologize for rambling on. I've learned a

lot about coping with my mom's LBD and other issues from my colleagues here at

work, and think it's worth passing on. " Keep what you like and leave the rest. "

 

Joyce - and you - will be in my prayers. Please let us know how she and all your

family are doing.

 

Lin

 

Subject: Re: My Sister Joyce

To: LBDcaregivers

Date: Tuesday, April 7, 2009, 11:55 PM

June K,

I would ask the MD if she went on Hospice what meds would they continue to give

her. I think it depends on the nh. And I think it depends on how vocal you

are. Mom didn't go off any meds when Hospice came in. And you can always

go off Hospice if you want her treated and they won't. Hospice treated

Mom's thrush in her mouth, even though she was on Hospice.

It was painful for her to eat and I insisted. It is suppose to be comfort

care. So what ever makes them comfortable. Mom wasn't on any of the

dementia drugs, so I don't know about that.

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 friends. The situation with my sister, Joyce, is not getting any better.

She only has one daughter and she loves her mother very much but is having

problems accepting the fact that Joyce will never again be well. She hasn't

seen Joyce in two weeks and says she just can't stand to go. I'm not

surprised because she has always been loved so much by her Mom and Dad that they

sheltered her too much. She is worried about what she would do if she lost her

Mom and her Dad also. She is worried about durable Power of Attorney, Wills,

etc. She has a very loving and patient husband who is doing everything he can

to help her. Thhey only have one son and he is in the Air Force now serving in

Iraq. Her Dad is carrying the burden of his wife with LBD and his only daughter

with bouts of uncontrollable crying. She also said she is depressed because she

can't make everything right for her Mom. She is seeing a doctor and getting

treatment. I've talked to her and volunteered to be her

" substitute " Mom if she needs me. Joyce seems to slip a little each

day. She doesn't know about her daughter and never mentions her to me.

Still pocketing food badly and not eating very much at all. She cannot get up

and down by herself but once she is up, she can walk a little bit holding on to

me. The doctor will see her tomorrow and I will be there, along with her

husband. QUESTIONS: I don't know if it is time for hospice or not. If he

suggests hospice, when they go strictly to palliative care does that mean she

will come off all the meds she is on and just get meds to keep her comfortable?

Or, will she get pain meds and remain on what she is taking now also? Can any of

you suggest any questions I should ask her doctor? Thank you so much for your

help.

Love,

June Keeble

[Guest guest]

 

June K from June C.  I would push to get Hospice in there asap, as they could

give you some relief.  I know she wants you to be with her and you want to be as

much as you can.  But, sometimes you just can't be there that much if you have

other responsibilities.  In the long run, I know you will be glad that you have

spent as much time as you can.

 

Yes, it is a horrible disease and one that we know won't get better, so that's

what makes it so hard and everyone.  Good you got something to help you sleep,

as you have to keep yourself in good health, and lack of sleep is not good.

 

June C.

Subject: My Sister Joyce

To: LBDcaregivers

Date: Tuesday, April 21, 2009, 9:49 PM

Hello everyone. Thank you Raquel and Imogene for thinking of Joyce and me. Also,

many thanks to you Lin for your info regarding taking LO home for visits. I

don't know where to start regarding my precious sister Joyce. She is really

going down fast and is now being evaluated for hospice, She is still very stiff

and unable to get in and out of a chair without assistance. She took another

tumble last week and fell against a small lamp table and totally collapsed it.

The table was beside the chair she was trying to get out of and she lost her

balance and tried to hold on to the table and it went down with her. No broken

bones, thank goodness. Unrelated to the fall, she has a bad cut/bruise on her

chin. They've been treating it with antibiotics. We don't know when or how she

did this. Is this a cause for concern regarding infections? I finally had to go

to see my doctor because I could not sleep for thinking about Joyce. He gave me

some medication that

really helps. I sleep well but as soon as I awake, Joyce is on my mind. She

wants me with her all the time and just begs me to stay with her. It is so hard

to leave her. Late this afternoon, my husband, grandson and I took her a new,

beautiful recliner so that she can rest better. We sat her down in it and she

loved it BUT she started begging me to stay with her. She said she was going to

die and she wanted me with her. I talked to her as long as I could but could not

calm her. The nurses told me this was sundowning, which I suspected. I'll go and

spend most of the day with her tomorrow as my family responsibilities are very

light on Wednesdays. Please keep praying that Joyce will find peace and be able

to rest easily. I'll keep you posted regarding hospice. I know you have heard

this many times before and I have also heard it many times on this board - this

is the worse thing I've experienced in my entire life. With God as my strength

and encourager, I

WILL endure.

Love to all,

June Keeble

[Guest guest]

June, I have to wonder what meds your sister is on at this time and what might

help her feel more calm. Her agitation just doesn't sound like something she

should be going through. We want to make the journey as comfortable as possible

for our los.

>

> Hello everyone. Thank you Raquel and Imogene for thinking of Joyce and me.

Also, many thanks to you Lin for your info regarding taking LO home for visits.

I don't know where to start regarding my precious sister Joyce. She is really

going down fast and is now being evaluated for hospice, She is still very stiff

and unable to get in and out of a chair without assistance. She took another

tumble last week and fell against a small lamp table and totally collapsed it.

The table was beside the chair she was trying to get out of and she lost her

balance and tried to hold on to the table and it went down with her. No broken

bones, thank goodness. Unrelated to the fall, she has a bad cut/bruise on her

chin. They've been treating it with antibiotics. We don't know when or how she

did this. Is this a cause for concern regarding infections? I finally had to

go to see my doctor because I could not sleep for thinking about Joyce. He gave

me some medication that really helps. I sleep well but as soon as I awake, Joyce

is on my mind. She wants me with her all the time and just begs me to stay with

her. It is so hard to leave her. Late this afternoon, my husband, grandson and

I took her a new, beautiful recliner so that she can rest better. We sat her

down in it and she loved it BUT she started begging me to stay with her. She

said she was going to die and she wanted me with her. I talked to her as long as

I could but could not calm her. The nurses told me this was sundowning, which I

suspected. I'll go and spend most of the day with her tomorrow as my family

responsibilities are very light on Wednesdays. Please keep praying that Joyce

will find peace and be able to rest easily. I'll keep you posted regarding

hospice. I know you have heard this many times before and I have also heard it

many times on this board - this is the worse thing I've experienced in my entire

life. With God as my strength and encourager, I WILL endure.

> Love to all,

> June Keeble

>

[Guest guest]

June: So sorry to hear things are going downhill so fast. Are there mirrors

and windows which reflect in the afternoon and evening where Joyce is? I

found it better to cover the mirrors and at least have sheer curtains or

blinds pulled to help Ray in the late afternoon and evening. The reflections

seemed to scare him. I was very surprised at the last NH there were 3

mirrors in his room. In the first there were none--just one in the bathroom.

I agree that perhaps some seroquel or something like that might help this

agitation she is experiencing. It was a God-send to us. When they took all

the rest of his meds away at the end, I asked them to please leave him with

seroquel because I was so afraid he would experience the wicked agitation.

He wasn't able to swallow any longer, so they put it in a capsule and gave

it to him rectally which was a recommendation from Hospice. We did not have

hospice but the NH called to ask them. Thank God Ray never begged to go

home.

That would have been tough for me as I felt so guilty leaving him at the NH.

Your sister's condition sounds a lot like Ray's and I would hope that it

goes fast--for her sake and for yours. 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 15,

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 K,

Sending good thoughts your way and up. Hope things settle for Joyce. Someone

in the family should have been notified after they found her first bruise. I

wondered if her husband was notified. (And again after the second.)

Hope she heals up quickly.

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. Thank you Raquel and Imogene for thinking of Joyce and me.

Also, many thanks to you Lin for your info regarding taking LO home for visits.

I don't know where to start regarding my precious sister Joyce. She is really

going down fast and is now being evaluated for hospice, She is still very stiff

and unable to get in and out of a chair without assistance. She took another

tumble last week and fell against a small lamp table and totally collapsed it.

The table was beside the chair she was trying to get out of and she lost her

balance and tried to hold on to the table and it went down with her. No broken

bones, thank goodness. Unrelated to the fall, she has a bad cut/bruise on her

chin. They've been treating it with antibiotics. We don't know when or how she

did this. Is this a cause for concern regarding infections? I finally had to

go to see my doctor because I could not sleep for thinking about Joyce. He gave

me some medication that really helps. I sleep well but as soon as I awake, Joyce

is on my mind. She wants me with her all the time and just begs me to stay with

her. It is so hard to leave her. Late this afternoon, my husband, grandson and

I took her a new, beautiful recliner so that she can rest better. We sat her

down in it and she loved it BUT she started begging me to stay with her. She

said she was going to die and she wanted me with her. I talked to her as long as

I could but could not calm her. The nurses told me this was sundowning, which I

suspected. I'll go and spend most of the day with her tomorrow as my family

responsibilities are very light on Wednesdays. Please keep praying that Joyce

will find peace and be able to rest easily. I'll keep you posted regarding

hospice. I know you have heard this many times before and I have also heard it

many times on this board - this is the worse thing I've experienced in my entire

life. With God as my strength and encourager, I WILL endure.

Love to all,

June Keeble

[Guest guest]

prayers for you and your family and sister that you all find peace,I don't

have a family member with this disease,I'm mostly here to learn as I am a

nurse and will most likely be changing back to working geriatrics in the

near future,my heart goes out to each and every one of you and the things

you find yourself dealing with.You are all in my daily prayers that you find

the strength to carry on day after day,this is just such a wonderful caring

group

Heidi

My Sister Joyce

> Hello everyone. Thank you Raquel and Imogene for thinking of Joyce and

> me. Also, many thanks to you Lin for your info regarding taking LO home

> for visits. I don't know where to start regarding my precious sister

> Joyce. She is really going down fast and is now being evaluated for

> hospice, She is still very stiff and unable to get in and out of a chair

> without assistance. She took another tumble last week and fell against a

> small lamp table and totally collapsed it. The table was beside the chair

> she was trying to get out of and she lost her balance and tried to hold on

> to the table and it went down with her. No broken bones, thank goodness.

> Unrelated to the fall, she has a bad cut/bruise on her chin. They've been

> treating it with antibiotics. We don't know when or how she did this. Is

> this a cause for concern regarding infections? I finally had to go to see

> my doctor because I could not sleep for thinking about Joyce. He gave me

> some medication that really helps. I sleep well but as soon as I awake,

> Joyce is on my mind. She wants me with her all the time and just begs me

> to stay with her. It is so hard to leave her. Late this afternoon, my

> husband, grandson and I took her a new, beautiful recliner so that she can

> rest better. We sat her down in it and she loved it BUT she started

> begging me to stay with her. She said she was going to die and she wanted

> me with her. I talked to her as long as I could but could not calm her.

> The nurses told me this was sundowning, which I suspected. I'll go and

> spend most of the day with her tomorrow as my family responsibilities are

> very light on Wednesdays. Please keep praying that Joyce will find peace

> and be able to rest easily. I'll keep you posted regarding hospice. I

> know you have heard this many times before and I have also heard it many

> times on this board - this is the worse thing I've experienced in my

> entire life. With God as my strength and encourager, I WILL endure.

> Love to all,

> June Keeble

>

>

>

>

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

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

wish I could send more than hope and prayers,but you and everyone here

certainly has that from me

Heidi

My Sister Joyce

> Hello Heidi,

> I'm glad that you decided to send me hope and courage through your email

> message. This is my first experience with this awful disease and this

> support system of wonderful people on this board is priceless. Please

> continue to pray for my sister Joyce. Also pray for me as I try my best to

> make her last days, months, or years the best they can be.

> Blessings,

> June

>

>

>

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

>

> Welcome to LBDcaregivers.

>

>

[Guest guest]

Hi June,

I sorry about your scare today.

Did the nurses or the DON give you an indication of what the problem might have

been? She might have been in a semi-coma and your reactions to get her to wake

up were strong enough for her to break through and wake up.

My thoughts and prayers are with you, Joyce, and her family. It would be so

much easier if we understood...but some things are not revealed until God thinks

we are ready.

Joan

>

> 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]

Dear June,

 

Thank you for keeping us posted about your dear sister Joyce. Your fearfulness

and anxiety are understandable. I'm not a medical person, but my mom's had LBD 8

years. Folks at have taught me a lot, and with other administrators in our

senior care organization, I'm in ongoing training with our medical staff. We

care for a significant number of people  with LBD. 

 

O   LBD itself causes many odd behaviors. It's called the disease of

fluctuations. Behaviors, physical symptoms and emotional symptoms can change in

weeks, days, hours - even minutes.

 

O   Good meds can cause problems, including those taken for a while. One lady

here started sleeping lots more than usual. Kids frantic and wanted tests. Docs

did a meds eval first - drug taken for a long time which had helped her was the

problem. Her body couldn't process it anymore. When it was stopped, she woke

up. As people get older and more frail of body and mind, they generally need

fewer meds or meds that aren't so strong.

 

O   Dosages of meds can cause problems. With too high a dose of a good med,

there can be harmful side effects. Too low a dose and the person isn't getting

the help the med could provide.

 

O   Drug interactions can be harmful.  Some combinations of meds cannot be given

to the same person. Even meds the person needs can be dangerous if not given on

the proper schedule. One of our gentlemen became combative every

afternoon. CNA reported " sundowning. "   Meds eval done - the man's daughter

had changed the meds schedule and was giving two helpful meds at the same time,

and his brain couldn't handle all the stimulation flooding in. After three days

of giving the meds 6 hours apart, the problem stopped.

 

O   Treating symptoms with more drugs can be dangerous. Docs first investigate

what is actually causing the problem.

 

O   Some meds are dangerous for older people and those with LBD. They can cause

immediate problems or build up in the system over time. Side effects from these

dangerous drugs include lethargy, loss of appetite, respiratory distress,

cardiac failure, combativeness, psychiatric symptoms, etc. 

 

O   Please tell us Joyce's meds and dosages. If you've done this before, I

apologize but have missed it. Knowing would help us offer our ideas. If you'd

like, I'll ask our PharmD about them. His specialty is geriatric/dementia and

neuro/psych meds. He's done this for others here.

 

O   Request an immediate meds eval. Enlist the MD's help and also the pharmacist

or pharmacologist who oversees all meds. With all the behaviors you are seeing,

this would be a very wise step to take ASAP.

 

O   Mouth-open sleeping is fairly common across age groups. It is seen often in

LBD and may not lead to other problems. It can also signal a sleep disorder.

People who are over-medicated or sedated often mouth-breath. Is this new with

Joyce?

 

O   Unresponsiveness should be immediately evaluated. When someone cannot be

roused, they might have experienced a TIA or other cardiac event, may be in

seizure, may be over-medicated, may have a sleep disorder, be dehydrated, or

blood pressure may have dropped dangerously low. There are other causes,

including LBD-related changes in the central nervous system. It should be

checked out.

 

O   Lack of appetite/thirst should be evaluated. It can be caused by simple

aging: older people lose taste buds so food isn't as appealing and sometimes

they just don't think about drinking. It is often seen in dementia: frequently

when one of the cognition meds is started, people " remember " to eat/drink and

this improves. Numerous physical ailments can decrease appetite/suppress thirst.

Overmedication can suppress appetite/thirst.

 

O   Dehydration is dangerous. If Joyce can't/won't eat right now, get lots of

liquids into her and use Ensure-type drinks. Dehydration causes mental status

changes. It results in body systems shutting down.

 

O   When doctors see odd or sudden/increasing changes, they do two things right

away:  1) check all aspects of all meds and 2) check for new physical problems,

especially infections, sudden onset events like cardiac or organ failure.

 

O   Have Joyce seen by the MD soonest, regardless of how the week-end goes.

You've described a lot of serious symptoms/behaviors this past week. It might

all be dementia-related. Maybe there's a new disease process the doc hasn't

uncovered. Perhaps Joyce is in the dying process. And possibly

it's medication-related.  

 

No one at a distance can say for certain what all this means. Joyce is going

through a horrible experience - and surely some or all of her suffering can be

relieved. You're scared, but you love her and can advocate for her. When

families call our help line with this kind of situation, we strongly recommend

they insist their MD see the LO and find out what is happening. A good MD will

do everything necessary to figure it out, including calling in an LBD

specialist, other specialists, ordering tests and getting a thorough meds eval

from the pharmacologist. 

 

My mom experienced what you've told us about Joyce - hard to rouse, scared to be

left alone, emotional, extremely confused, couldn't getup/stand by herself,

didn't want to eat or drink. This happened twice, with some variations. The

first time she had pneumonia that was missed on two X-rays.The second time was

caused by meds that should not be given in LBD. From personal and professional

experience, I know meds certainly don't cause everything that goes wrong for our

LOs, but they are frequently at fault.

 

Please stay in touch with us and if you're willing, tell us what you can.

Everyone wants to help. You and Joyce have become very special to us.

 

Many prayers and much love,

 

Lin

 

Subject: My Sister Joyce

To: LBDcaregivers

Date: Friday, April 24, 2009, 4:18 PM

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

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

Welcome to LBDcaregivers.

[Guest guest]

Imogene,

You are amazing!!! How are you feeling? We just got back from seeing Mom a few

minues ago -she wasn't great for a good part of the afternoon, and then perked

up at 4 PM - go figure.

Hugs and kisses are the absolute best - my Mom can't get enough of them, and we

can't give her enough!

Sending you many hugs and kisses with love,

Helene

>

> Isn't that right! Lin, is quite special. And, so are you Helene.

> 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 4/25/2009 10:08:59 AM Central Daylight Time,

> hgm54@... writes:

>

> >

> > Dear Lin,

> > Thank you for all the information. Your posts are incredible; you are an

> > amazing person.

> > Sending many hugs,

> > Helene

> >

> >

>

>

>

>

>

> **************

> Check all of your email inboxes from anywhere on the web.

> Try the new Email Toolbar now!

> (http://toolbar.aol.com/mail/download.html?ncid=txtlnkusdown00000027)

>

>

>

[Guest guest]

June, What, Lin, has said is all very important, and very true. She says

it like it is, as she pours her heart into trying to help us. I for one

appreciate her no end. I know it will do wonders for your sister, as it has my

darling.

Risperdal nearly killed my husband. I saw a terrible down hill spiral in a

very short period of time. The doctor wouldn't respond to my calls, so I

weaned Don off the medication myself. From start of taking it, to being

weaned off it took three weeks.

You won't believe how much better your sister will be.

I am praying for yours and her benefit. She can be helped and you are just

the one to do it. Because now, you are armed with what has to be done.

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 8:34:31 P.M. Central Daylight Time,

lprattbethany@... writes:

Dear June,

Thank you so much for writing. I know everyone here has you and Joyce in

our hearts and prayers. And how awful that, on top of everything else,

you've had a fall. All our prayers!!!!!

..

All of us here care about you and what your dear sister is going through.

Because I do care, I'll be blunt. I'm grateful for your openness and

honesty, and want to offer the same. I'm not in your shoes, of course, and I'm

not a medical person, but like many here, my loved one has been put on meds

that are very dangerous to people with LBD. Like them, I have had to find

trustworthy doctors and learn from the experts about what meds are

considered safe.

There are LBD experts who have studied the disease and know which meds

work and which are dangerous. They are teaching other MDs how to treat people

with LBD. This is science, not guesswork, and their research is readily

available. In fact, our moderator can give you links to some of the

material, which the MD should review right away. I'm guessing he has little

experience treating LBD, or he would not have given her these meds.

This MD has Joyce on three meds that are known to cause the most troubling

behaviors of LBD that we want to address - they quickly make

hallucinations, restlessness, loss of appetite, fearfulness, etc. much worse.

They cause

loss of balance, inability to ambulate, etc. Doctors who do not know how

to treat LBD then give more of the same meds, further worsening the

problem. Please have him take her off these dangerous meds and leave her on the

ones known to help.

Please take the following very seriously. No healthy person could tolerate

this mix, and certainly not one with LBD. If Joyce has no other medical

problems, getting her medications resolved would likely give her a much

improved quality of life. With all my heart, I strongly urge you to insist that

the MD consult with someone skilled in LBD - or at least review the

clinical literature. You also have the right to request a pharmacology consult

in

which a trained PharmD will review Joyce's meds and suggest what to remove,

what to keep and on what schedule.

Abilify is extremely dangerous in the elderly and in dementia of any

kind!!!! It can cause all the kinds of problems Joyce is experiencing, and

should never be given. It cannot help her and is likely contributing to her

problems. It should never be given in dementia.

Xanax is a benzodiazepine: these are very harmful in LBD and also can

cause the very kinds of problems you are trying to resolve!!!!! It should not

be given.

Risperdal is considered harmful in LBD, and can cause the very kinds of

problems you are trying to resolve!!!!! It should not be given.

Exelon is one of the recommended meds for LBD. It is one of three meds

consistently recommended as the standard LBD treatment.

Namenda is sometimes used in LBD - sort of as a " booster. "

Seroquel and Clozaril - especially Seroquel - are the two atypical

antipsychotics consistently recommended as standard treatment in LBD for the

hallucinations, aggressiveness, sleep disturbances, restlessness, etc. It is

also used as a support med while the bad drugs are removed.

People with LBD should be on a very limited number of meds. They are

extremely sensitive to meds and typically respond poorly to anything not on the

recommended list.

June, please know I pass this on with much respect and concern. Joyce

deserves to be as comfortable as possible in body, mind and soul. I truly

believe she does not need to be suffering all that you have described to us.

All of us continue to keep you and Joyce in our prayers.

Lin

---

Subject: My Sister Joyce

To: LBDcaregivers

Date: Sunday, May 3, 2009, 7:35 PM

Hi, Lin. Yes - I received your earlier post and printed it out so that I

could

go down the list and give you the info you asked for. Thank you so much

for

doing this. I guess I've been on a big pity party because I just didn't

know how to write to you. Also, about a week ago, I fell in my home and was

pretty banged up for a few days. I couldn't sleep and got up to go

downstairs and sit in my recliner and watch TV until I got sleepy. I have a

blanket in my chair that had fallen to the floor in front of my chair. I

did

not turn any lights own and proceeded to get tangled up in the blanket and

fell.

I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I

should give you some background. Joyce is 77 and I a 73. We've always

been

very close growing up. We have two completely different personalities. I

am not

afraid or embarrassed to speak my mind. When I have a legimate argument,

I will

argue my case to the end. Joyce, on the other hand, has always been

extremely

shy, very nervous, worried about everything, and easily scared. She had

been

going to the same doctor for about 20 years and I felt like he would give

Joyce

anything she wanted or do anything she wanted - just my impression. About

three

years ago, Joyce started having wild hallucinations, seeing children

dancing in

her back yard, thinking she was fully dressed when she had no clothes on

at all.

She was hospitalized and put on Aricept. She was already on Zoloft 50 mg

which

she has been taking for years. She recovered somewhat and was able to

take care

of her household. Things came to a halt when she got lost in her car and

we did

not find her until 2:00 AM. From there she went to worse and we changed

doctors.

He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and

started

her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then,

without warning, she went beserk. She began stuffing towels down the

toilet,

took all her clothes from the closet because " that man " was trying to

steal them. She hated her husband, Clyde, and me and would not even let

us into

her unit without her becoming violent. She even resorted to yelling

obscenities

to everyone and that is so very out of character for her. So - although we

did

not want to do it, we allowed her to have Abilify 10 mg daily. She also is

on

Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and

Xanax

0.25 every eight hours. They've recently added the Exelon Patch at night.

It

took about two weeks for the meds to get her straigtened out. WE all

realize

that this is a lot of medication but it is the only thing that keeps the

horrible hallucinations in check. Her doctor will see her Wednesday and

I'll

know better what to tell you then. He told us that he thinks she is about

one

month from hospice care. He also said he was going to begin backing off her

medications.

Thank you so much for your invaluable help, Lin. This has not been very

good

week.

Love,

June Keeble

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

Welcome to LBDcaregivers.

Yahoo! Groups Links

[Non-text portions of this message have been removed]

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

Welcome to LBDcaregivers.

[Guest guest]

June one more question. When was Joyce put on Risperdal? My husband had

hallucinations, and that is the medication the doctor prescribed over the

phone through the nurse. I found another Doctor within a month, after I

removed the Risperdal. The other doctor, a highly respected

Geriatric/Psychiatrist, told me that I did the right thing for Don. In fact he

was proud of me.

If the hallucinations aren't frightening then leave them alone. Joyce can

visit with them, and have company that doesn't scare her.

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 9:00:36 P.M. Central Daylight Time,

junekeeble@... writes:

Thanks, Lin. I appreciate every bit of info you can supply me with and I

will NEVER think you are not trying to help Joyce and me. I have had a

long discussion with Joyce's doctor regarding the Abilify before and he stated

that he had tried to control the hallucinations with other meds and that

the Abilify was the only thing that worked. I'll surely speak to him

Wednesday regarding the Abilify and the Xanax. The only thing that really

troubles me is this - when I told you that about 3 years ago Joyce was

hospitazlied because of bad hallucinations. She was so bad that she had to be

restrained for about a week. I can't help but wonder if she has some deep

mental

problem in addition to the LBD. Knowing her personality and background, I

would not be surprised.

Thanks. I'll let you know what the doctor says.

Love,

June

**************The Average US Credit Score is 692. See Yours in Just 2 Easy

Steps!

(http://pr.atwola.com/promoclk/100126575x1222376998x1201454298/aol?redir=http://\

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ay5309AvgfooterNO62)

[Guest guest]

 

Lin:  I thought the same thing when I read the list of meds, but you put it in

much better language.  If the doc wants to start removing meds, he should start

on those three first, but I understand you can't get of Xanax very easily.  

But, if it is reduced gradually, maybe they could get it down to a very minimum

dose. 

 

There is a man in my church whose wife has AD, and we have discussed her quite

often.  She used to be able to come to church but hasn't been able to now for

the last several months.  However, she is able to stay alone part of the time,

as he does get to church sometimes.  Anyway, he told me today that she had been

progressively getting worse, and they finally put her on Seroquel in addition to

her Aricept and Namenda, and it has improved her greatly so that she now can

help cook, wash dishes, etc., when she hadn't been able to do those things.  He

says that she wants to " go home " all day, and nothing can convince her that she

is home.  I told him to go along with her by saying that they'd go later or

something like that, so hopefully, that will help.

 

To June, hopefully, the doctor will listen and maybe get her off the harmful

meds before they do too much more damage.

 

The other June.

From: keeblejune <junekeeblenumail (DOT) org>

Subject: My Sister Joyce

To: LBDcaregivers@ yahoogroups. com

Date: Sunday, May 3, 2009, 7:35 PM

Hi, Lin. Yes - I received your earlier post and printed it out so that I could

go down the list and give you the info you asked for. Thank you so much for

doing this. I guess I've been on a big pity party because I just didn't

know how to write to you. Also, about a week ago, I fell in my home and was

pretty banged up for a few days. I couldn't sleep and got up to go

downstairs and sit in my recliner and watch TV until I got sleepy. I have a

blanket in my chair that had fallen to the floor in front of my chair. I did

not turn any lights own and proceeded to get tangled up in the blanket and fell.

I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I

should give you some background. Joyce is 77 and I a 73. We've always been

very close growing up. We have two completely different personalities. I am not

afraid or embarrassed to speak my mind. When I have a legimate argument, I will

argue my case to the end. Joyce, on the other hand, has always been extremely

shy, very nervous, worried about everything, and easily scared. She had been

going to the same doctor for about 20 years and I felt like he would give Joyce

anything she wanted or do anything she wanted - just my impression. About three

years ago, Joyce started having wild hallucinations, seeing children dancing in

her back yard, thinking she was fully dressed when she had no clothes on at all.

She was hospitalized and put on Aricept. She was already on Zoloft 50 mg which

she has been taking for years. She recovered somewhat and was able to take care

of her household. Things came to a halt when she got lost in her car and we did

not find her until 2:00 AM. From there she went to worse and we changed doctors.

He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and started

her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then,

without warning, she went beserk. She began stuffing towels down the toilet,

took all her clothes from the closet because " that man " was trying to

steal them. She hated her husband, Clyde, and me and would not even let us into

her unit without her becoming violent. She even resorted to yelling obscenities

to everyone and that is so very out of character for her. So - although we did

not want to do it, we allowed her to have Abilify 10 mg daily. She also is on

Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and Xanax

0.25 every eight hours. They've recently added the Exelon Patch at night. It

took about two weeks for the meds to get her straigtened out. WE all realize

that this is a lot of medication but it is the only thing that keeps the

horrible hallucinations in check. Her doctor will see her Wednesday and I'll

know better what to tell you then. He told us that he thinks she is about one

month from hospice care. He also said he was going to begin backing off her

medications.

Thank you so much for your invaluable help, Lin. This has not been very good

week.

Love,

June Keeble

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

Welcome to LBDcaregivers.

[Guest guest]

 

Lin:  I thought the same thing when I read the list of meds, but you put it in

much better language.  If the doc wants to start removing meds, he should start

on those three first, but I understand you can't get of Xanax very easily.  

But, if it is reduced gradually, maybe they could get it down to a very minimum

dose. 

 

There is a man in my church whose wife has AD, and we have discussed her quite

often.  She used to be able to come to church but hasn't been able to now for

the last several months.  However, she is able to stay alone part of the time,

as he does get to church sometimes.  Anyway, he told me today that she had been

progressively getting worse, and they finally put her on Seroquel in addition to

her Aricept and Namenda, and it has improved her greatly so that she now can

help cook, wash dishes, etc., when she hadn't been able to do those things.  He

says that she wants to " go home " all day, and nothing can convince her that she

is home.  I told him to go along with her by saying that they'd go later or

something like that, so hopefully, that will help.

 

To June, hopefully, the doctor will listen and maybe get her off the harmful

meds before they do too much more damage.

 

The other June.

From: keeblejune <junekeeblenumail (DOT) org>

Subject: My Sister Joyce

To: LBDcaregivers@ yahoogroups. com

Date: Sunday, May 3, 2009, 7:35 PM

Hi, Lin. Yes - I received your earlier post and printed it out so that I could

go down the list and give you the info you asked for. Thank you so much for

doing this. I guess I've been on a big pity party because I just didn't

know how to write to you. Also, about a week ago, I fell in my home and was

pretty banged up for a few days. I couldn't sleep and got up to go

downstairs and sit in my recliner and watch TV until I got sleepy. I have a

blanket in my chair that had fallen to the floor in front of my chair. I did

not turn any lights own and proceeded to get tangled up in the blanket and fell.

I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I

should give you some background. Joyce is 77 and I a 73. We've always been

very close growing up. We have two completely different personalities. I am not

afraid or embarrassed to speak my mind. When I have a legimate argument, I will

argue my case to the end. Joyce, on the other hand, has always been extremely

shy, very nervous, worried about everything, and easily scared. She had been

going to the same doctor for about 20 years and I felt like he would give Joyce

anything she wanted or do anything she wanted - just my impression. About three

years ago, Joyce started having wild hallucinations, seeing children dancing in

her back yard, thinking she was fully dressed when she had no clothes on at all.

She was hospitalized and put on Aricept. She was already on Zoloft 50 mg which

she has been taking for years. She recovered somewhat and was able to take care

of her household. Things came to a halt when she got lost in her car and we did

not find her until 2:00 AM. From there she went to worse and we changed doctors.

He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and started

her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then,

without warning, she went beserk. She began stuffing towels down the toilet,

took all her clothes from the closet because " that man " was trying to

steal them. She hated her husband, Clyde, and me and would not even let us into

her unit without her becoming violent. She even resorted to yelling obscenities

to everyone and that is so very out of character for her. So - although we did

not want to do it, we allowed her to have Abilify 10 mg daily. She also is on

Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and Xanax

0.25 every eight hours. They've recently added the Exelon Patch at night. It

took about two weeks for the meds to get her straigtened out. WE all realize

that this is a lot of medication but it is the only thing that keeps the

horrible hallucinations in check. Her doctor will see her Wednesday and I'll

know better what to tell you then. He told us that he thinks she is about one

month from hospice care. He also said he was going to begin backing off her

medications.

Thank you so much for your invaluable help, Lin. This has not been very good

week.

Love,

June Keeble

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

Welcome to LBDcaregivers.

[Guest guest]

 

Lin:  I thought the same thing when I read the list of meds, but you put it in

much better language.  If the doc wants to start removing meds, he should start

on those three first, but I understand you can't get of Xanax very easily.  

But, if it is reduced gradually, maybe they could get it down to a very minimum

dose. 

 

There is a man in my church whose wife has AD, and we have discussed her quite

often.  She used to be able to come to church but hasn't been able to now for

the last several months.  However, she is able to stay alone part of the time,

as he does get to church sometimes.  Anyway, he told me today that she had been

progressively getting worse, and they finally put her on Seroquel in addition to

her Aricept and Namenda, and it has improved her greatly so that she now can

help cook, wash dishes, etc., when she hadn't been able to do those things.  He

says that she wants to " go home " all day, and nothing can convince her that she

is home.  I told him to go along with her by saying that they'd go later or

something like that, so hopefully, that will help.

 

To June, hopefully, the doctor will listen and maybe get her off the harmful

meds before they do too much more damage.

 

The other June.

From: keeblejune <junekeeblenumail (DOT) org>

Subject: My Sister Joyce

To: LBDcaregivers@ yahoogroups. com

Date: Sunday, May 3, 2009, 7:35 PM

Hi, Lin. Yes - I received your earlier post and printed it out so that I could

go down the list and give you the info you asked for. Thank you so much for

doing this. I guess I've been on a big pity party because I just didn't

know how to write to you. Also, about a week ago, I fell in my home and was

pretty banged up for a few days. I couldn't sleep and got up to go

downstairs and sit in my recliner and watch TV until I got sleepy. I have a

blanket in my chair that had fallen to the floor in front of my chair. I did

not turn any lights own and proceeded to get tangled up in the blanket and fell.

I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I

should give you some background. Joyce is 77 and I a 73. We've always been

very close growing up. We have two completely different personalities. I am not

afraid or embarrassed to speak my mind. When I have a legimate argument, I will

argue my case to the end. Joyce, on the other hand, has always been extremely

shy, very nervous, worried about everything, and easily scared. She had been

going to the same doctor for about 20 years and I felt like he would give Joyce

anything she wanted or do anything she wanted - just my impression. About three

years ago, Joyce started having wild hallucinations, seeing children dancing in

her back yard, thinking she was fully dressed when she had no clothes on at all.

She was hospitalized and put on Aricept. She was already on Zoloft 50 mg which

she has been taking for years. She recovered somewhat and was able to take care

of her household. Things came to a halt when she got lost in her car and we did

not find her until 2:00 AM. From there she went to worse and we changed doctors.

He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and started

her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then,

without warning, she went beserk. She began stuffing towels down the toilet,

took all her clothes from the closet because " that man " was trying to

steal them. She hated her husband, Clyde, and me and would not even let us into

her unit without her becoming violent. She even resorted to yelling obscenities

to everyone and that is so very out of character for her. So - although we did

not want to do it, we allowed her to have Abilify 10 mg daily. She also is on

Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and Xanax

0.25 every eight hours. They've recently added the Exelon Patch at night. It

took about two weeks for the meds to get her straigtened out. WE all realize

that this is a lot of medication but it is the only thing that keeps the

horrible hallucinations in check. Her doctor will see her Wednesday and I'll

know better what to tell you then. He told us that he thinks she is about one

month from hospice care. He also said he was going to begin backing off her

medications.

Thank you so much for your invaluable help, Lin. This has not been very good

week.

Love,

June Keeble

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

Welcome to LBDcaregivers.

[Guest guest]

 

Lin:  I thought the same thing when I read the list of meds, but you put it in

much better language.  If the doc wants to start removing meds, he should start

on those three first, but I understand you can't get of Xanax very easily.  

But, if it is reduced gradually, maybe they could get it down to a very minimum

dose. 

 

There is a man in my church whose wife has AD, and we have discussed her quite

often.  She used to be able to come to church but hasn't been able to now for

the last several months.  However, she is able to stay alone part of the time,

as he does get to church sometimes.  Anyway, he told me today that she had been

progressively getting worse, and they finally put her on Seroquel in addition to

her Aricept and Namenda, and it has improved her greatly so that she now can

help cook, wash dishes, etc., when she hadn't been able to do those things.  He

says that she wants to " go home " all day, and nothing can convince her that she

is home.  I told him to go along with her by saying that they'd go later or

something like that, so hopefully, that will help.

 

To June, hopefully, the doctor will listen and maybe get her off the harmful

meds before they do too much more damage.

 

The other June.

From: keeblejune <junekeeblenumail (DOT) org>

Subject: My Sister Joyce

To: LBDcaregivers@ yahoogroups. com

Date: Sunday, May 3, 2009, 7:35 PM

Hi, Lin. Yes - I received your earlier post and printed it out so that I could

go down the list and give you the info you asked for. Thank you so much for

doing this. I guess I've been on a big pity party because I just didn't

know how to write to you. Also, about a week ago, I fell in my home and was

pretty banged up for a few days. I couldn't sleep and got up to go

downstairs and sit in my recliner and watch TV until I got sleepy. I have a

blanket in my chair that had fallen to the floor in front of my chair. I did

not turn any lights own and proceeded to get tangled up in the blanket and fell.

I still have a few bruises but I'm OK. Now, back to Joyce. I feel that I

should give you some background. Joyce is 77 and I a 73. We've always been

very close growing up. We have two completely different personalities. I am not

afraid or embarrassed to speak my mind. When I have a legimate argument, I will

argue my case to the end. Joyce, on the other hand, has always been extremely

shy, very nervous, worried about everything, and easily scared. She had been

going to the same doctor for about 20 years and I felt like he would give Joyce

anything she wanted or do anything she wanted - just my impression. About three

years ago, Joyce started having wild hallucinations, seeing children dancing in

her back yard, thinking she was fully dressed when she had no clothes on at all.

She was hospitalized and put on Aricept. She was already on Zoloft 50 mg which

she has been taking for years. She recovered somewhat and was able to take care

of her household. Things came to a halt when she got lost in her car and we did

not find her until 2:00 AM. From there she went to worse and we changed doctors.

He admitted her to Wesley Woods Memory Unit, stopped the Aricept, and started

her on Risperdal 0.5 mg once a day. Things improved for a few weeks. Then,

without warning, she went beserk. She began stuffing towels down the toilet,

took all her clothes from the closet because " that man " was trying to

steal them. She hated her husband, Clyde, and me and would not even let us into

her unit without her becoming violent. She even resorted to yelling obscenities

to everyone and that is so very out of character for her. So - although we did

not want to do it, we allowed her to have Abilify 10 mg daily. She also is on

Namenda 10 mg. twice a day,Zoloft 50 mg once a day, aspirin 81mg daily and Xanax

0.25 every eight hours. They've recently added the Exelon Patch at night. It

took about two weeks for the meds to get her straigtened out. WE all realize

that this is a lot of medication but it is the only thing that keeps the

horrible hallucinations in check. Her doctor will see her Wednesday and I'll

know better what to tell you then. He told us that he thinks she is about one

month from hospice care. He also said he was going to begin backing off her

medications.

Thank you so much for your invaluable help, Lin. This has not been very good

week.

Love,

June Keeble

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

Welcome to LBDcaregivers.