Update on Mom and an Apology to the Group

[Guest guest]

When I look back at where my Mom was in January and where she was

yesterday when I was there, I can see such a dramatic decline. When

we brought her home from the hospital in January (after finally

receiving a diagnosis of LBD) she was alert, sitting in her recliner,

working her word search puzzles, talking, laughing...it was hard to

accept the LBD diagnosis because she just didn't seem to fit so many

of the things in the stages. I hadn't been to their house in almost

a week. It was the end of the school year, and I was running

frantically trying to do everything required for end of school

closeout. I called Dad several times a day to check on Mom and on

him, but couldn't get over there.

Her Parkinsonism is becoming more pronounced. She finds it difficult

to hold on to food, drinks, or anything. When she's awake enough to

eat, she only wants hard-boiled eggs, hamburger and onion rings, or

something sweet. Hospice provides cases of Ensure, and that's the

largest part of her diet now. If she wants a hamburger, she will eat

1/4 of it, and the rest will go on the floor if we don't remove it

quickly enough. She pours water, food, anything she doesn't want,

onto the floor over the rails of her hospital bed.

My daughter, granddaughter, son and I did their grocery shopping

yesterday and took the groceries over. When we got there, Mom was

happy to see us, hugged and kissed all of us, remembered our names,

hugged Gracie (my granddaughter), and then within 2 minutes had gone

back to Lewyville. She would occasionally rouse long enough to yell

out something totally incomprehensible, and then go back to the

stare. During those times, she will not respond to anyone or

anything except to move away from any touch. She won't talk, but

will push you away or turn away.

Her lucid moments are so infrequent now. She does rouse and ask for

something to eat, but by the time you can get it to her she's out

again. Ensure has been a blessing because you can get it to her

quickly and she will normally stay awake long enough to get a

glassful down. Then she's out. If she's lucid when she has to pee,

she will use the commode, but if the urge strikes during one of her

Lewy Zone moments, she's incontinent. We've tried pads in underwear,

and adult diapers, but she pulls everything off.

Our hospice nurse has been very diligent in checking for UTI's, and

she's had no medication changes since January. She comes three times

a week to check on Mom's health. She did have some problems

breathing, being unable to clear congestion, but hospice provided a

nebulizer and medication and that cleared up pretty quickly.

Physically, Mom is doing well. Home health comes three times a week

and bathes her and washes her hair.

We had a physical therapist coming in three times a week also, trying

to get Mom able to bear her weight on her legs, but then Hospice and

the doctor decided that she was better off being less mobile because

Dad was catching her trying to leave the house on her walker. With

increased ability to walk, she was falling more and more, and Dad

can't get her up on his own without physically injuring himself!

Dad complains constantly about being alone (although our " visitor's

log " shows four to five visits EACH DAY to their home from neighbors,

church friends, home health, hospice, family, clergy) and everytime I

go over I have to counsel with him and deal with his crying. Yes,

he's on antidepressants, but he's been overdosing himself on

hydrocodone which was prescribed for arthritis and that almost

totally negates the effects of the antidepressants. Dad wants to

feel nothing.

There are so many other things that have happened recently, but this

is not my own sounding board for my problems...*LOL* I just try to

laugh as often as possible, find humor in situations, and sometimes

I'm afraid that my efforts may offend others here. We all find our

own ways to deal with that which would kill us otherwise. Some take

medications, some seek therapy, some pray...I know that I stuff mine

inside, deep enough to not affect my daily living, and try to

maintain a sense of humor about it. If I seem irreverent or off-the-

wall sometimes, please understand that I'm just dealing with

horrible, horrible situations here as best I can.

[Guest guest]

Jannis - I don't remember what meds your mom is on... but sometimes

there comes a point that the meds need tweaking... An example of when

my mom was on Seroquel - just a small amount. And b/c so many here

had success w/ it she was put on it. That was when I confused her

agitation being LBD agitation, when it was actually withdrawal from

the douzy meds she was given... We took her off Seroquel for reasons

other than it wasn't working. And we were so surprised by how much

more lucid she became. And it was just the smallest amount she was

taking... That's when we finally realized that mom couldn't handle

any of the antipsychotics... There's also many here who stop the PD

meds at a certain point... so remind us what meds she's on, and when

her last visit to a doctor was...

>

> When I look back at where my Mom was in January and where she was

> yesterday when I was there, I can see such a dramatic decline.

When

> we brought her home from the hospital in January (after finally

> receiving a diagnosis of LBD) she was alert, sitting in her

recliner,

> working her word search puzzles, talking, laughing...it was hard to

> accept the LBD diagnosis because she just didn't seem to fit so

many

> of the things in the stages. I hadn't been to their house in

almost

> a week. It was the end of the school year, and I was running

> frantically trying to do everything required for end of school

> closeout. I called Dad several times a day to check on Mom and on

> him, but couldn't get over there.

>

> Her Parkinsonism is becoming more pronounced. She finds it

difficult

> to hold on to food, drinks, or anything. When she's awake enough

to

> eat, she only wants hard-boiled eggs, hamburger and onion rings, or

> something sweet. Hospice provides cases of Ensure, and that's the

> largest part of her diet now. If she wants a hamburger, she will

eat

> 1/4 of it, and the rest will go on the floor if we don't remove it

> quickly enough. She pours water, food, anything she doesn't want,

> onto the floor over the rails of her hospital bed.

>

> My daughter, granddaughter, son and I did their grocery shopping

> yesterday and took the groceries over. When we got there, Mom was

> happy to see us, hugged and kissed all of us, remembered our names,

> hugged Gracie (my granddaughter), and then within 2 minutes had

gone

> back to Lewyville. She would occasionally rouse long enough to

yell

> out something totally incomprehensible, and then go back to the

> stare. During those times, she will not respond to anyone or

> anything except to move away from any touch. She won't talk, but

> will push you away or turn away.

>

> Her lucid moments are so infrequent now. She does rouse and ask

for

> something to eat, but by the time you can get it to her she's out

> again. Ensure has been a blessing because you can get it to her

> quickly and she will normally stay awake long enough to get a

> glassful down. Then she's out. If she's lucid when she has to

pee,

> she will use the commode, but if the urge strikes during one of her

> Lewy Zone moments, she's incontinent. We've tried pads in

underwear,

> and adult diapers, but she pulls everything off.

>

> Our hospice nurse has been very diligent in checking for UTI's, and

> she's had no medication changes since January. She comes three

times

> a week to check on Mom's health. She did have some problems

> breathing, being unable to clear congestion, but hospice provided a

> nebulizer and medication and that cleared up pretty quickly.

> Physically, Mom is doing well. Home health comes three times a

week

> and bathes her and washes her hair.

>

> We had a physical therapist coming in three times a week also,

trying

> to get Mom able to bear her weight on her legs, but then Hospice

and

> the doctor decided that she was better off being less mobile

because

> Dad was catching her trying to leave the house on her walker. With

> increased ability to walk, she was falling more and more, and Dad

> can't get her up on his own without physically injuring himself!

>

> Dad complains constantly about being alone (although our " visitor's

> log " shows four to five visits EACH DAY to their home from

neighbors,

> church friends, home health, hospice, family, clergy) and everytime

I

> go over I have to counsel with him and deal with his crying. Yes,

> he's on antidepressants, but he's been overdosing himself on

> hydrocodone which was prescribed for arthritis and that almost

> totally negates the effects of the antidepressants. Dad wants to

> feel nothing.

>

> There are so many other things that have happened recently, but

this

> is not my own sounding board for my problems...*LOL* I just try to

> laugh as often as possible, find humor in situations, and sometimes

> I'm afraid that my efforts may offend others here. We all find our

> own ways to deal with that which would kill us otherwise. Some

take

> medications, some seek therapy, some pray...I know that I stuff

mine

> inside, deep enough to not affect my daily living, and try to

> maintain a sense of humor about it. If I seem irreverent or off-

the-

> wall sometimes, please understand that I'm just dealing with

> horrible, horrible situations here as best I can.

>

[Guest guest]

Jannis, I'm new to this group of friends, but for what I've read this IS a

sounding board and a virtual shoulder to cry on. You don't need to apologize for

venting your frustrations here & nbsp;-I guess that's exactly the reason the group

was created for! It's bad enough for you to have your Mom with LBD, and now your

Dad is in need of your help too. This matter of being a caregiver can wear

down & nbsp;the person in charge to the core; if your Dad is frail and suffering

from depression, to be a & nbsp;24/7 caregiver for your Mom must be a terrible

burden on him. Have you considered a nursing home for her? I know it's a very

difficult decision, but I can see there comes a time when that is the only

solution if the caregiver is to survive the ordeal.

Good luck to you and your parents! And continue venting as much as you need in

order to keep your sanity.

Love,

Raquel

[Guest guest]

Speaking of Depends, I am depending on all of you to guide me a bit more

with your expertise in getting our men to keep a simple long pad on. My darling

realized he needed them. Then he went without just when I had washed his

sheets and mattress cover. ARGH! (All right Imogene, now keep your cool with

lots of love and don't fuss about it.) Whew. Well, I will wash everything

again,

and be kind and loving and ask him to spare me the extra work. I can use my

pneumonia in my plea. He knows that I am having a problem with it right now.

I was cooking some short cut food (I won't pull this stunt again.) I sauteed

bacon and a bit of onion in a pan and opened a can of collard greens into

it. The fumes " whoofed " (My new word) into my face and lungs when that juice

hit the pan. It really did a number on me. I could hardly get any air for some

time, with even using my emergency inhaler. I use Azmacort twice a day with 4

puffs each time. But, that experience

left me in bad shape for the rest of the day. Don't ever try Collard greens

from a can even if you like the greens, as we do. I have always used fresh.

Those things are not even fit for flushing down the toilet. But, we

apologized to the toilet and

let it inhale them.

Love you all and continue to learn so much. But, the biggest thing I have

learned is

to show love all the time. It does him so much more good, and sure does me.

If I display agitation over something, it will ruin his day. I'll spend the

rest of the day trying to calm him down. So, now I love me, and I love him. It

feels so much better.

Try it you'll like it, (Big smile)

Imogene

In a message dated 6/2/2008 3:44:27 AM Central Daylight Time,

twomido@... writes:

Jan,

One of the ways I heard to keep Depends on men and it might work for women

too, was to put regular underpants on over depends. It is harder for them to

get them off.

You can use this for your sounding board as much and as often as you like,

That is what we are here for. And for those of us who aren't still " in the

process " it reminds us to thank our stars that it is over. But I certainly do

remember going through it. And it is why I stay on to support you.

Sounds like your Dad is having a few memory problems of his own. Glad so

many are visiting them.

You can deal with the situation any way you like. We love to have a laugh

too. Everyone needs to deal with this disease in the best way they know how.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th

year in a nh.

She was almost 89 when she died in '02. No dx other than mine.

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[Guest guest]

Jannis, like you my LO has taken a tremendous downturn since January

and I feel much of what you have written in your letter everyday

myself. Never feel you the need to feel bad for any of your

feelings, they are very real to many of us. They are very real to

me as I relate. The hardest part for me is with my husband, Tom, as

life taking care of my father's affairs and his needs, even with him

living in an ALF is very time consuming. I work full time, drive 1

hr & 15 mins one way to and from work each day, try to visit with

Dad almost everyday, take Dad to doctor's appts, make sure he has

what he needs for his daily living, pay his bills, take care of a 5

acre home (Middle Kidz Ranch) and family and now inventorying all of

Dad's stuff as it will need to be sold and has to be approved by the

court under the Guardianship. So as you can see we are all in the

Lewey Life together and all have our own tramatic lives and hey, if

we need to vent, be silly, weird, cry, laugh, scream, freak-out or

whatever to deal with it all, then I say go for it, cause those are

the things we need to gather our strength from so that we can take

care of our LO's to the best of our ability. It is hard, harder

than anything I've ever dealt with in my own personal life, but I'd

do it all over again for my Dad any day anyone asked me too, without

question. So hang in there and never feel you can't write those

feelings down here, cause there is no better place. Meri Jane

>

> When I look back at where my Mom was in January and where she was

> yesterday when I was there, I can see such a dramatic decline.

When

> we brought her home from the hospital in January (after finally

> receiving a diagnosis of LBD) she was alert, sitting in her

recliner,

> working her word search puzzles, talking, laughing...it was hard

to

> accept the LBD diagnosis because she just didn't seem to fit so

many

> of the things in the stages. I hadn't been to their house in

almost

> a week. It was the end of the school year, and I was running

> frantically trying to do everything required for end of school

> closeout. I called Dad several times a day to check on Mom and on

> him, but couldn't get over there.

>

[Guest guest]

Jan: No apologies needed. We are here to help you through the tough days.

Most of us have been, or will be where you are and pretty much understand

everything you are going through. In fact, I am going through much the same

thing with my husband and many times I feel as tho I am a grieving widow.

The decline in the last 9 months has been unbelievable. He can barely speak

at all and not interested in anything and does not enjoy anything. It is so

hard to drive for an hour to visit him and just sit there with no response

or anything. It is heartbreaking. But those occasional moments when the

light comes on, or there is a smile or he repeats " I love you " to me are

worth it all. They are just getting farther and farther apart. Keep your

chin up and cherish those moments when she shines out for you. Leona

Leona: Caregiver for husband Ray, age 67, 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, 45 minutes from home. So far, so good! Hardest thing I

have ever done in my life, however.