permission to copy article for NH Care

[Guest guest]

Group,

Sorry for repeating this article. I have enclosed copyright permission for

anyone who wishes to copy this for any purpose. It wasn't even intended to

be an " article " but was just simply a plan to go by and the need to express

what should IMO be done anyway at any care facility for any " dementia type "

patient.

I grant copyright permissions to post the article " Lewy Body Disease From A

Patient's Point of View. "

The enclosed article was written by me originally for the sole purpose of

educating the staff at the Nursing Home where my mother is currently being

cared for. It's content was gathered from first hand experiences I have

witnessed by my mom since she was diagnosed in January of 2002. I have also

taken into consideration areas of concern from other caregivers who have a

loved one who has been diagnosed with Lewy Body Disease. Some of it my mom

has expressed to me to make known to the Nursing Home staff.I have no

problem with anyone who wants to publish this as a tool for caring for a

loved one with Lewy Body Disease. Please keep in mind that no two patients

share the exact same symptoms and /or require the exactly the same help.

This article should be used only as a tool to keep in mind when caring for a

LBD patient. The basic concept of this article was to ensure that a patient

be treated in a kind compassionate manner and not to be treated as just

another patient with another problem. Too often these people are ignored and

pushed aside as someone who doesn't know what they are talking about when

the truth of the matter is they know a whole lot, they simply have lost the

ability to communicate and to make their needs known. These people are not

crazy, they are members of someone's family who until this beast hit were no

different than any other human on this earth. No matter who they are they

make a difference to someone and deserve the same rights as anyone else. It

is my belief that aside from the Lewy Body Disease aspect itself these

guidelines should be followed for all Nursing Home or In Home Care Patients.

Shirley Lay

Shirley0914@...

The article is as follows:

A LEWY BODY PATIENT'S POINT OF VIEW:

Lewy Body symptoms make my life one of constant frustration.

There are so many things I can and want to do for myself; but at any time, I

may suddenly find I'm unable to do anything without assistance, and at times

I'm overcome with fatigue. Please be patient and allow me a bit more time. I

know the staff members are very busy, but when you tell me " Hurry " , the

stress of something even that simple may make my symptoms even worse. If you

yell at me or act visibly irritated, I get more confused and will most

likely become very agitated. If you try to make a sudden change in my

routine or schedule, that confuses me too. Please, take the time to explain

things and talk to me in a reassuring, kind compassionate manner. When you

roll your eyes or complain that I'm asking for too much help, it makes me

feel bad. I don't want to overwork anyone but the reason I'm here is that

sometimes, I really do need help. Do you really believe I enjoy not being

able to do things for myself? I use to be very independent and never dreamed

I'd ever have to ask anyone for help.

When I wet my diaper or have a bowel movement, I'm very embarrassed. It's a

gross, dirty feeling and I'm ashamed that I'm in this condition. Leaving me

this way for hours at a time is even more humiliating and I wish I could

just die instead of having to be this way. Sometimes I have real

difficulties with simple tasks like brushing my hair, washing, or getting to

the toilet on time. It embarrasses me that I can't handle these personal

matters. I've had Lewy body for over a year and on a good day I can hold a

conversation, feed myself and attempt to comb my own hair. But those other

days, that's when I need your help.

Often and quite unpredictably, my movements become extra slow, even

immobile. Sometimes for a short time, I literally " freeze " on the spot. A

physiotherapist can demonstrate useful strategies to help me become unstuck.

Don't push me or pull me as this may lead to a fall. I worry a lot about

falling and breaking a hip or wrist, but I want to keep mobile and

independent. I appreciate the staff understanding this. When my body is

working, I'm able to move about safely using a walker, a wheelchair, or

other aides.

Mealtimes in the dining room can be really frustrating and embarrassing as

it takes me ages to cut my food and get it to my mouth. Sometimes it's

impossible to do either. The food is often cold before I'm half through the

meal. My eyesight is so unpredictable, sometimes I am able to see pretty

well; other times I can't even make out the food on my plate and don't know

what I'm eating until it reaches my mouth. Sometimes I can't even tell if I

still have food left on my plate.

Over last year or so, I've also developed problems with swallowing. As a

result, there's always too much saliva in my mouth and I drool. It's very

embarrassing. Because of the swallowing difficulties, I worry a lot about

choking. A side effect of some of the medications I take is a dry mouth, so

I need a lot of ice water available. The water also helps my speech and is

good for the constipation that plagues a lot of LBD patients. Sometimes it

may be difficult for me to swallow water; then, I tend to do better with

juices and other thicker liquids.

Voluntary movements sometimes take more effort for a person with Lewy Body

Disease so I get tired very easily. It's difficult for me to get a good

night's sleep, as I may need help turning over. If my medications wear off

before morning, I may awaken feeling cramped and stiff and since I can't

move naturally in bed, it's impossible to fall back to sleep.

Sometimes I may look grouchy or uninterested. It may be I'm simply not able

to see you or hear you. But, please ask me how I'm feeling because I still

enjoy a good conversation. My speech is sometimes difficult to understand;

the words get slurred or muffled and the volume is low because of various

muscles being affected. My slowness to respond isn't always related to my

hearing problem or that my brain is slow; sometimes it just takes awhile for

the words to come out! With a conscious effort on my part, I'm sometimes

able to speak more clearly and I appreciate the staff taking a little extra

time to listen very carefully.

Lewy Body Disease is a very lonely and boring condition. Often I feel

trapped in my own body. My clumsy hands make activities such as crafts or

games difficult, although I used to enjoy a game cards, bingo, or Scrabble.

I'd like to socialize more, to feel like a normal human being. If someone

can help me with a game of bingo or whatever, I'd enjoy that. It's too hard

for me to maneuver the pieces and sometimes I can't even see them and my

concentration is not as good as it used to be. This really doesn't mean I

wouldn't enjoy the company if I could have some help. But I don't want to be

made to feel stupid or inadequate in front of others.

I would like nothing better than to return home and resume my independent

life. I don't enjoy depending on others for anything. Please remember that I

didn't choose to have my life turned upside down. Your patience and

understanding is the best medicine for me. Remember that I still have

feelings; I still have needs; not so long ago, I was just like everyone

else. The best thing you can do for me now is treat me with respect.

Encourage me. Don't talk over my head as if I'm not there. I may not respond

to your questions or remarks but that doesn't mean I didn't hear you. I

don't need to be put to sleep or shoved into a corner; I need to keep as

active of a life as possible. Last but not least, please do not compare me

to other patients. This disease may have similarities to other diseases, but

it is very unique. No two patients display the same symptoms. No one can

tell from one minute to the next what my abilities will be at any given

moment, so please don't think I am being stubborn or ignorant; the disease

is running my body.

I no longer have full control. There is no longer a normal day for me

_________________________________________________________________

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