Re: Re: Decision

[Guest guest]

Dear , (and family)

I am so sorry you and your sisters need to make this kind of a decision. And I

do think you are doing the best thing for your Mom. My best wishes for all of

you and I do hope if she is shutting down, it is an easy transition for all of

you.

My heart and thoughts are with you through all of this.

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.

Re: Decision

Dear ,

Please know that I will be keeping you, your Mom and your sisters in

my special prayers. I know that whatever your decision is it will be

out of love, respect, caring and compassion for your Mom.

My best,

Carol Incognito

>

> Dear Group

>

> My sisters and I met yesterday to discuss " end of life " for our

> Mother. I brought with me the e-mails and some of the links that

you

> all sent to me. We especially found comfort in " Hard Choices " .

> We ran the gamut of emotions together. We talk about Mum as she

used

> to be, we talked about how her life has been recently. We laughed,

we

> cried and we have decided to let her go. I don't think any of us

got

> much rest last night as we struggled with the " second guesses " but

> today we seem to have found some peace with our decision. It has

been

> helpful that her doctor told us that he feels we have made the right

> decision and by chance one of Mum's oldest friends (her ex-boss and

> now an Anglican Bishop) heard about it, dropped by to see Mum and

say

> some prayers today. She left us a the following note:

>

> " My heart goes out to you and your sisters. I know how painful that

> final vigil must be for you all. It is even harder to see your

parent

> so changed from the one you grew up with and love so deeply.

> I commend you for the difficult decision not to get involved in

heroic

> measures. Not only would Maggie not have wanted it but there really

> is no point in trying to restore her to the kind of confused half-

life

> she has been living lately. At this stage of her life there are

worse

> things than dying and I pray she will just slip away quietly. It

> could take a long time; the human body is extraordinarily strong

even

> at the end. You have been and continue to be the kind of caring

> daughters every mother should have. God bless, Ann "

>

> I know there will be difficult days ahead. I want to thank all of

you

> for your thoughts and prayers.

>

> Much love

>

> from Cresswell ON Canada

> Long distance CG to Margaret (Mum) aged 76

> Moving to Palliative Care at Sunnybrook Hospital, Toronto, ON

> End Stages LBD

>

[Guest guest]

Carol B,

It is good to hear you have been with us. And I am glad the group has been

helpful to you. I was just wonder the other day, how can we get more of those

who are reading to join us. And here you are.

I am sorry you're at this point with your Mom. And because you have already

been through this with you Dad, it makes it tougher. You kind of know what is

coming.

Right now it appears you must respect your Mom's wishes. It sounds like she is

aware enough to make the decision. You have to try and make the best of that

situation and later, you might need to make more decisions, if it comes to that,

to remove the tube.

It almost sounds like your Mom is not only aware enough, but has some fears

about dying. Is she religious and does a pastor or priest come and see her

sometimes? Is she in a nh? And do they have any kind of services and can she

join them? Or if she is at home is the Church visiting?

One of the other things that I think happen with dementia is that the body

forgets sometimes what to do with the food, even if she is getting it. And if

she loses weight anyway, the feeding tube may or may not help.

it sounds like you have been a long time caregiver and have done it for a long

time. Don't stay away. Come and visit with us and help us with things you have

done that work for you. We all know what someone tries, might work for someone

else and we need you here.

Welcome and lots of hugs in your decision making. I am sure one of the things

that you have recognized by now, is that no matter what everyone else thinks,

you are the one who has to make the final decisions.

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.

Re: Decision

I have been reading posts for quite awhile, about 3 years. I have gotten so

many ideas and sense of calm from so many LBD caregivers. My mother, dx with

LBD/Parkinson's has been in hospital last two days not able to swallow anymore

(or just a little, doctors not sure yet, still will do video X-ray. )

Since Mom's heart, lungs and vital organs are all doing well, she might need the

feeding tube for nutrition. Doctor has told me not feeding her will cause

malnutrition and her organs will break down. Well, I do not want to do that to

my Mom, but I think Parkinson's is causing the poor nutrition not being able to

swallow. I have experience with the feeding tube and trache with my father

passing away in 5/05 and being 18 months on the feeding tube and 5 months on the

trache. (He also had a total stroke and skin cancer which he died from).

I am very confused and hate to see my Mom on the feeding tube just like my Dad,

but she is aware of what is going on and talks to me and the nurses in her

whispering voice. She has said she wants to try the tube a little while. I am

so hesitant but I think I must follow her wishes and give the tube a go and see

what happens, since she has no other current problems but the LBD/Parkinsons.

I saw my Dad how when everyone eats in the nursing home he was left in his room

because he was on the tube. I saw him get pnuemonia so many times from not

being mobile. I am so sad to see my mother do this also.

Thank you so much for letting me air my concerns and feelings. I do appreciate

this on line support very much. Thank You! Carol B. Elk Grove Vlg IL

[Guest guest]

HI Carol,

My heart goes out to you and your mom. I just hate the choices were are forced

to make. I send you and your mom much strength for the future.

Best

Courage

[Guest guest]

Carol B. What a dilemma! If my parent was still able to talk to me, I would

not be able to withhold the feeding tube. Yet, my dear husband has said

firmly no feeding tube, so those are my guidelines. He also has it in writing.

That will be hard to say the least, to withhold nutrition when he is still

lucid. Breaks your heart. LBD is so cruel in so many ways.

Imogene

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

Parkinsonism.

In a message dated 12/11/2006 7:30:01 PM Central Standard Time,

BULECK@... writes:

I have been reading posts for quite awhile, about 3 years. I have gotten so

many ideas and sense of calm from so many LBD caregivers. My mother, dx

with LBD/Parkinson's has been in hospital last two days not able to swallow

anymore (or just a little, doctors not sure yet, still will do video X-ray. )

Since Mom's heart, lungs and vital organs are all doing well, she might need

the feeding tube for nutrition. Doctor has told me not feeding her will

cause malnutrition and her organs will break down. Well, I do not want to do

that to my Mom, but I think Parkinson's is causing the poor nutrition not

being able to swallow. I have experience with the feeding tube and trache with

my father passing away in 5/05 and being 18 months on the feeding tube and 5

months on the trache. (He also had a total stroke and skin cancer which he

died from).

I am very confused and hate to see my Mom on the feeding tube just like my

Dad, but she is aware of what is going on and talks to me and the nurses in

her whispering voice. She has said she wants to try the tube a little while.

I am so hesitant but I think I must follow her wishes and give the tube a go

and see what happens, since she has no other current problems but the

LBD/Parkinsons.

I saw my Dad how when everyone eats in the nursing home he was left in his

room because he was on the tube. I saw him get pnuemonia so many times from

not being mobile. I am so sad to see my mother do this also.

Thank you so much for letting me air my concerns and feelings. I do

appreciate this on line support very much. Thank You! Carol B. Elk Grove

Vlg IL

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