New member

Posted December 14, 2001 · December 14, 2001

I'm not sure when the packets are going to be sent, maybe at the end

of this month. I do know that you can start the challenge on Dec

15th.

I am starting December 16th. :-)

Martie

> Hey Everyone, I am a new member and anxiously awaiting my

Challenge

> Packet. Any idea when they will be sent out? i would also love to

> hear from any folks with advice on training. I live in Oregon and

> would welcome any emails with advice form here or afar. Good luck

to

> everyone! Matshak

Posted May 26, 2003 · May 26, 2003

Welcome Jackie,

Where do you go from here? Not sure how to answer that question. As I

stated to someone else recently, the answer isn't necessarily a nh. I

had Mom with me for three years and other than not sleep every other

day, she was " doing ok. " Then I had her sleep meds " adjusted " and all

hell broke lose and she ended up in a wheel chair and was all drugged

out. She lasted a year in the nh, it was not the best one and I still

had a full days work and now I had to fight with people who thought they

knew more than I did about my Mom.

If it is working with your LO, don't change it. It will get worse.

Donna

Posted May 26, 2003 · May 26, 2003

Jackie

Welcome to the caregivers group. My dad passed away in Sept. last year

from LBD, and I have decided to stay in the group hoping to help others

through their journey. My dad lived alone in an apartment during the

beginning of LBD, and a couple years after diagnosis. He was admitted

to an adult psychiatric unit, then went to a nursing home. He lived in

a nursing home (NH) for almost 3 years. He was changing and safety

became an issue. He would lock himself out of the apartment complex (it

was a security bldg) and also lock himself out of his apartment once

inside the building. He fell a lot, lost many things, and was

hallucinating. His gait became so bad that he used a cane...ended up

losing that also. Then he indicated he would harm himself, and that is

when he went to the hospital. I had home health workers, aids, and

nurses coming in when I couldn't be there and the nurse called my cell

phone, when I wasn't even home yet to tell me she needed to report my

dad would harm himself. My dad passed away a little over 5 yrs after

diagnosis which can vary from person to person.

I want to tell you about another caregivers group for LBD. It is the

caringspouses group.

Here, we have parents, brothers, sisters, and such that we care for.

The caringspouses group deals with spouses caring for spouses. You are

more than welcome to stay here, even if only to lurk, yet you may also

want to join the caringspouses group as well. I will add the link,

hoping that it will bring up the group.

http://www.caringspouses

If not, go to htt://www.lewybodydisease.org

That will take you to the LBD website and on it has the 2 links for both

caregivers websites.

For now, I will add you to my ever so growing prayer list.

Be sure to continue to take care of yourself.

Hugs-

Sandie

Posted June 14, 2003 · June 14, 2003

,

This sounds like a very tough time for you and your father. The

emergency room is the right place for him at the moment, in order to

get his general medical condition stabilized. Then, he may need

inpatient geriatric/psychiatric hospitalization (for a few weeks), in

order to stabilize his agitation/wandering/psychosis well enough

BEFORE sending him to an assisted living facility, nursing home, or

return to your family's home.

Yes, nursing homes will continue to send severely agitated patients

to the emergency room time-and-time again... sometimes at the drop

of a hat... partly because they don't have the staff to handle the

severity of the problems... partly because they probably don't want

the liability when there are easier geriatric patients to manage in

the marketplace.

The psychiatrist was entirely wrong to tell you he had only six

months to live (that is, 6 months to live due to LBD... perhaps not

due to cancer or other body system failures - I don't know the extent

of his other medical conditions). The truth is that the illness

durations of dementias (like LBD and AD) are VERY VARIABLE from

patient to patient. Believe me, I know. I run a research study at

Hopkins called " The Predictors Study " whose primary purpose it to try

to figure out why illness durations are SO varied (We're attempting

to discover which factors are most important in determining certain

outcomes (i.e., time to nursing home placement & time to death)...

and we still don't have a very accurate model developed from the

data). We can say the the average duration of illness for a LBD

patient is 5-7 years (shorter than the 10 year estimate for AD

patients). But remember, your father's illness is an INDIVIDUAL

case, and he could easily be well above or well below the 5-7 year

average. The single fact that he's ambulatory (able to wander/walk)

suggests to me that he likely has longer than 6 months. So, don't

start panicking.

The thing to do is to get him back on track ASAP, so that he is

managable outside of the emergency room. If this kind of " revolving

door " emergency room pattern is ongoing, shoot me an e-mail and I'll

put you in touch with Hopkins' geriatric/psychiatric inpatient

Admissions Coordinator. We deal with these diffucult kinds of cases

all the time, and I've seen nursing home staff react with " He's such

a pleasant patient now. I'd never would have believed it! " when the

patient has returned to the nursing home on the right meds. That's

one of the things I love about my job... I get to follow patients

through everything from home, to assisted living, to

hospitalizations, and back to nursing homes... and share in both

their triumps and defeats.

Things must seem grime & hopeless now, but there is no reason to

think that the right meds can't help to stabilize his condition -

enough for a nursing home or you to manage. I've seen it happen

numerous times.

Keep us posted on how he (and of course, you) are doing.

-Russ

>

> Hello,

> My 73 year old father has had Alzheimer's since 1995. He has one

valve in

> his heart that is closing and is also a diabetic. The doctor

decided that

> he wouldn't be able to survive any operations. And more

importantly, why

> prolong the inevitable. Recently, he was hospitalized with a high

fever

> and tests showed his prostate level was 98, indicating prostate

cancer. A

> psychiatrist told us that after observing him, he recognized

symptoms

> indicative of LBD and that he had about six months to live. He was

> discharged from the hospital and went home to my sister's house

where he

> lives with my mother. He had been wandering and pacing for months

before

> but after his week's stay in the hospital, it became more intense.

He's

> always `afraid' and had to `pee' and needed help. I swear in one

hour alone

> he was up and down a hundred times! No sooner did we get him

tucked into

> bed, he was getting up. After two days of no sleep, my sister took

him to

> the emergency room where they made arrangements to put him into a

nursing

> home. My mother got home at 6:30 and by 7:30, the nursing home

called and

> said that he wasn't able to stay there—he was wandering around

going into

> other rooms, scaring the residents. They transported him by

ambulance back

> to the hospital where he is currently. Meanwhile, his blood

pressure has

> fluctuated, his sugar is high, and they are treating him with

risperidone.

> When he was home, he wouldn't take his medications. Even in the

hospital,

> he will spit out his pills. I wish we could get him on meds that

would

> stabilize him enough to keep him home. I live one hour from them

and will

> be off this summer (my sister and I are both teachers) and it was

our plan

> to take care of him, giving our mom a break. We want to do what's

best for

> him. My mother visited one assisted living facility and we are

looking for

> others in the area. (They live near Camp Hill, Pennsylvania).

Another

> option is to look into private duty nursing care. I don't know

what else to

> do. We are very frustrated. This is the first time I've reached

out to

> others for support and answers. I would appreciate any advice or

> suggestions.

>

Posted June 14, 2003 · June 14, 2003

Hello ,

I'm glad you decided to reach out for help and this is the right place to

go.

I can so relate to your father's pacing, anxiety/panic and his needing to go

to urinate every few seconds. My mother has been doing this for about 3

weeks now and we, too, have been so very frustrated, exhausted and angry

that we can't find any help with this. From speaking to other's I've

learned this happens quite a bit with people who have classical AD.

Would it be possible for you to list the meds that your father is taking?

I got my mother some Valerian sublingual drops and this seemed to take the

edge off but it by no means took away the urge to urinate or the

anxiety/panic. We have also started mom on Seroquel last week 25mgs halved

and so far she hasn't displayed any awful side effects. Mom still has the

pacing/anxiety/panic/urge to urinate but I've noticed that she has had two

days now where the pacing/anxiety/panic/urge to urinate was not as intense.

These two days were not one after the other but I'll take it any way it

comes.

Let's start with the meds your father is taking and go from there. My mom

still lives at home with my dad and I go in everyday to help her/him out.

Let's see what we can do to make your father's quality of life as good as

possible.

Courage

New member

>

>Hello,

>My 73 year old father has had Alzheimer’s since 1995. He has one valve

in

>his heart that is closing and is also a diabetic. The doctor decided that

>he wouldn’t be able to survive any operations. And more importantly, why

>prolong the inevitable. Recently, he was hospitalized with a high fever

>and tests showed his prostate level was 98, indicating prostate cancer. A

>psychiatrist told us that after observing him, he recognized symptoms

>indicative of LBD and that he had about six months to live. He was

>discharged from the hospital and went home to my sister’s house where he

>lives with my mother. He had been wandering and pacing for months before

>but after his week’s stay in the hospital, it became more intense. He’s

>always ‘afraid’ and had to ‘pee’ and needed help. I swear in one hour

alone

>he was up and down a hundred times! No sooner did we get him tucked into

>bed, he was getting up. After two days of no sleep, my sister took him to

>the emergency room where they made arrangements to put him into a nursing

>home. My mother got home at 6:30 and by 7:30, the nursing home called and

>said that he wasn’t able to stay there—he was wandering around going into

>other rooms, scaring the residents. They transported him by ambulance back

>to the hospital where he is currently. Meanwhile, his blood pressure has

>fluctuated, his sugar is high, and they are treating him with risperidone.

>When he was home, he wouldn’t take his medications. Even in the hospital,

>he will spit out his pills. I wish we could get him on meds that would

>stabilize him enough to keep him home. I live one hour from them and will

>be off this summer (my sister and I are both teachers) and it was our plan

>to take care of him, giving our mom a break. We want to do what’s best for

>him. My mother visited one assisted living facility and we are looking for

>others in the area. (They live near Camp Hill, Pennsylvania). Another

>option is to look into private duty nursing care. I don’t know what else

to

>do. We are very frustrated. This is the first time I’ve reached out to

>others for support and answers. I would appreciate any advice or

>suggestions.

>

Posted June 14, 2003 · June 14, 2003

,

Welcome to a place to one wants to be. Wish there were a lot more

answers that we could give you here. The most we can do is support you

and your family in decisions you need to make.

My mom died in Oct, '02. But as I read your email, it was like

yesterday when I was wondering what to do next. I had her with me for

three years and the last year she was in a nh. And I am not who you

need to be discussing nh's with as I did not have a good experience.

It sounds like one of the good things you have, no matter the decision,

you have three of you who can help. Doing it alone isn't the way to go.

My daughter was my biggest support and helped me a lot, but she had her

own family too.

Because each person is so different in their disease, each caregiver

needs to struggle with their own answers. Even meds which work for one,

might not work for the next.

Stay and ask all the questions you need and we can all share our own

experience and share our paths. I lived it a day at a time and never

dreamed it would be 4 years. I remember after leaving the hospital, the

last time,. taking a pencil and multiplying how many days there were in

4 years. It's a lot.

Donna

Posted June 14, 2003 · June 14, 2003

Russ,

You don't know how relieved I am after reading your email. I should have

been communicating with support groups a long time ago (guilt, guilt,

guilt). I'm in Frederick, land and when I saw your email listed s

Hopkins, I thought this might be a good contact. I just spoke to my mother

and the doctor did another blood test, his PSA reading is down from 98 to

14! Am I correct to assume that the initial diagnosis of prostate cancer

was a little premature? Does LBD create false readings? The doctors are

saying that biopsy is the only way to rule out prostate cancer but he is

not in good physical condition to go through it. His blood sugar is out

of control and this could be due to the fact that he wasn't taking his meds.

(They prescribed metformin 3x day. ) Or could this too be false readings

due to the disease? We are getting so frustrated with these doctors and

their diagnoses. He is being seen by Internists of Central Pennsylvania.

Should he be seen by other physicians? Psychiatrists? He can be seen at

the Lebanon VA hospital too. Please let me know. In this day and age,

patients (or in our case, the patient's family) must take a proactive stand

in medical treatment.

Thanks for your help.

Re: New member