Decisions

December 8, 2006

Hi , does your mother have instructions to Doctors as to what should,

or should not, take place in the event she came to this stage? That would take

first place. Has your mother ever verbally expressed a desire to be kept

alive artificially? Or is she opposed to it?

Would you be keeping her alive to satisfy your own need to keep your mother

around as long as possible, because you just can't let go? Or, What is the

best for her in the long run? Do you think the longer she endures end stage by

being kept alive that she will be totally comfortable? Is she responsive to

you? Does she know you? How lucid was she before the pneumonia?

Ask your Doctor how long she is expected to live, and also, for another

Doctor's opinion. He may very well say no one can answer that. Then, ask him if

he would have this done on his own mother if she was in the same condition?

Yet, in the end it is up to you girls. My heart goes out to you. I am so

sorry. This is all I could think of off the top of my head, but it's a starter.

Love a bunch,

Imogene

Caregiver for my True Texas Gentleman husband of 36 years. He has LBD with

Parkinsonism.

In a message dated 12/8/2006 9:35:20 PM Central Standard Time,

skrabek@... writes:

Hi all

This will be a difficult e-mail to write. My sisters and I have

reached a crossroad with our Mum. One that we had hoped we would not

have to deal with yet.

Mum was sent to the hospital last week when the NH felt she had

aspirated on something (food or saliva) and she required deep

suctioning. Mum's white blood cell count was found to be slightly

elevated so they admitted her to check for a possible infection.

Everything seemed to be checking out and they would be returning her

to the NH when her respiration suddenly dropped to 37 (it's supposed

to be in the 90's). They put her on oxygen and re-checked for

infection and they diagnosed her with pnemonia. She was put on IV

fluids and antibiotic and she began to improve. On Tuesday the Dr

felt we should have the speech pathologist, Occupational therapist &

Physiotherapist come in and evaluate all the things they evaluate. On

Wednesday Mum was so sleepy none of the therapists could rouse her

enough to do their jobs. The " team " felt that the lack of food had

zapped Mum of all her energy so they inserted a temporary feeding tube

to get something into her system. The main worry was testing her

swallowing reflex. Aspiration in her sleepy state is high risk.

With more hand/eye coordination than Mum has shown in months, Mum

removed her feeding tube. My sisters and my first thought was that

the doctor would just put the tube back in but he is having us

re-think everything. He has told us we are faced with 4 choices

1) Put the feeding tube back in, hope she doesn't pull it out (is she

trying to tell us something?)

2) Do nothing (not sure what this means)

3) Start feeding her by mouth and take our chances that she will aspirate

4) Have a permanent feeding tube put in (again not sure of what this

means)

We believe the doctor feels that Mum will not be getting better, that

this is the stage of her life with LBD that she has reached.

Friends, experts, those who have been through this .... my sisters

and I are meeting to discuss our options and come up with our list of

questions for the medical staff. If you have any advise, questions we

should be asking or just your prayers for Mum and for us as we meet to

make decisions they will be greatly appreciated.

from Cresswell ON Canada

Long distance CG to Margaret (Mum) aged 76

Lives at The Briton House, Memory Floor, Toronto

DX Early Onset AD & PD approx. 2002

DX LBD 01/2005

Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

Was on: Sinemet, Excelon, Seroquel

Was given Risperdal in NH for a few weeks (Feb '05)

Haldol several times in Hospital Jan 05

December 8, 2006