Re: Digest Number 2987

[Guest guest]

RE: Roller Coaster.

The description of Mr. B's ups and downs is so similar to my husband, ,

that I have copied the text to send to family members. I know they think I

am somewhat hysterical when I send out messages that " the end is near. Come

if you want to say goodbye " etc. Then, when they do eventually show up,

is still among us, and even can be funny and lucid on occasion. On

other occasions he lies with his eyes closed, not acknowledging any of his

nearest and dearest, and then eventually calls out, " Everybody go home! "

The other day I was reading to him a lovely note from an old friend. In it

she had a quote I didn't know so I read it and said, " it must be a quote

from something or other. " " Kipling " he whispered. Other times he does not

know where he is, believes I have switched houses on him, and generally lies

with closed eyes, mute, and unmoving.

He can barely use his hands, is completely incontinent, it totally helpless,

cannot use his legs at all, refuses to be moved from his hospital bed to a

chair or commode. His tongue flicks constantly in and out of his mouth, he

cannot eat anything with any texture (I puree everything) and must hand

feed him, he weighs around 85 pounds, moans when he wants me, moans for no

reason at all. He hallucinates that he was walking all over the house and

tells me he is going to go upstairs and have a bath. And yet, he will

suddenly wake up and ask about absent friends, tell me he is hungry, tell me

he thinks he is now getting better and I find myself believing him.

I have called crematoriums thinking he would be gone by morning, and days

later have his children tell me they believe he will be here for his 80th

birthday in September.

His voice is usually a faint whisper, then suddenly he can speak perfectly

normally.

I have wailed, wept and held his hands all night waiting for the end. But

he keeps on trucking and can sit up and have a conversation and be bright,

funny and smart. He also can demand that the care aide cut some of the

foliage off a plant because it needed pruning. So I finally decided to

just ride this roller coaster as long as it keeps running, and try not to be

terrified of the inevitable ride's end.

Dixie McIlwraith

West Vancouver, BC

Re: in the UK

---Thanks for the hello Sandie ,hope your well.

take care

UK

[Guest guest]

Hello Dixie,

I remember the first time Mr. B " was dying " several months ago (this was

before Hospice and a Caregiver - I was on my own). I frantically called

everybody

BUT 911 because I was so emotional and thought it was " the end. " I even

called relatives back east to " be prepared " because it looked so bad. I had the

priest give him his last rites, made an appointment to set up " the funeral, "

and set out the only black dress I could fit into. Then, on the third morning,

he woke up and asked if he could have two fried eggs with bacon. Feeling like

a complete fool, the only thing I could do was hug him tightly and ask,

" You're back? " As usual, he knew what I was talking about and just gave me that

famous smile.

I have been through this " dying thing " several times since then, each time

getting a bit more easy to " handle. " Now, even the Caregiver is very casual

when Mr. B goes into what I call " Coma-Lewy. "

I wish you the best for going through such a contradictive disease and only

hope you know that you are not alone. Much Peace to you, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

UTI since 4/7 not getting any better - took Bactrim

Sleeping most of the day, breathing becoming an issue, asking for oxygen

daily.

Got a Living Trust years before he became too ill.

* * * * *

RE: Roller Coaster.

The description of Mr. B's ups and downs is so similar to my husband, ,

that I have copied the text to send to family members. I know they think I

am somewhat hysterical when I send out messages that " the end is near. Come

if you want to say goodbye " etc. Then, when they do eventually show up,

is still among us, and even can be funny and lucid on occasion. On

other occasions he lies with his eyes closed, not acknowledging any of his

nearest and dearest, and then eventually calls out, " Everybody go home! "

The other day I was reading to him a lovely note from an old friend. In it

she had a quote I didn't know so I read it and said, " it must be a quote

from something or other. " " Kipling " he whispered. Other times he does not

know where he is, believes I have switched houses on him, and generally lies

with closed eyes, mute, and unmoving.

He can barely use his hands, is completely incontinent, it totally helpless,

cannot use his legs at all, refuses to be moved from his hospital bed to a

chair or commode. His tongue flicks constantly in and out of his mouth, he

cannot eat anything with any texture (I puree everything) and must hand

feed him, he weighs around 85 pounds, moans when he wants me, moans for no

reason at all. He hallucinates that he was walking all over the house and

tells me he is going to go upstairs and have a bath. And yet, he will

suddenly wake up and ask about absent friends, tell me he is hungry, tell me

he thinks he is now getting better and I find myself believing him.

I have called crematoriums thinking he would be gone by morning, and days

later have his children tell me they believe he will be here for his 80th

birthday in September.

His voice is usually a faint whisper, then suddenly he can speak perfectly

normally.

I have wailed, wept and held his hands all night waiting for the end. But

he keeps on trucking and can sit up and have a conversation and be bright,

funny and smart. He also can demand that the care aide cut some of the

foliage off a plant because it needed pruning. So I finally decided to

just ride this roller coaster as long as it keeps running, and try not to be

terrified of the inevitable ride's end.

Dixie McIlwraith

West Vancouver, BC