Re: /Decisions

[Guest guest]

-

I have been where you are. In January 2002 my

dad had aspiration pneumonia. He was very

sick. He had been up and around, had great

color and hadn't lost any weight. Until the

pneumonia. He aged in a matter of days. He

went to the hospital and while there he had a

couple of swallow evaluations done. It was

determined that my dad couldn't swallow. I had

a 5 minute decision to make, no one else around.

I didn't know what to do. I knew if my dad couldn't

take in nutrition, he wouldn't live. I opted for a

PEG tube. This was surgically inserted into his

abdomen wall, to the stomach. All nutrition (liquid

nutrition supplements) would go through a hanging

tube hooked to this tube in my dad's stomach.

It was horrible. My dad hated it. He would unhook

the tube and swirl it around while the liquid went

all over everywhere. My dad did prevail though.

By April he regained his weight, was up walking

again, had rosy cheeks and was healthy again.

The tube was removed. My dad went on to live

another 2 1/2 years. Then came the choice once

again. A meeting was held with doctors, nurses,

staff from dietary...many people including myself

and my brother. This time I (being POA) opted

for no feeding tube. Dad had lived long enough

with LBD. He struggled with so much, it had been

hell for him. He had stopped eating on his own

and wouldn't allow me to feed him. He turned

his head away, grunted loudly and would push

the utensil away as if to say " NO " . It seems my

dad had made the decision for me. I had to

honor this. It was a tough decision but I know it

was the right one.

Please follow your heart. I believe caregiving is

helping a loved one in their journey. It is giving

all the love in the world. It is supporting a loved

one in every aspect of this journey. These are

my beliefs.

My heart goes out to you and your sister. Trust

your faith, trust your heart. I shall send up extra

prayers for you through the rest of this journey-

With many hugs-

Sandie and

Des Moines, IA

dad, Merle, passed from LBD 9-20-02, age 65

mum, Jo, lives in New Zealand with LBD, age 77

-- Decisions

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

Welcome to LBDcaregivers.