Re: Donna and Sally

[Guest guest]

Debbie-

Something you might want to check into... we were told to not crush

'time release' meds because the full dose (at least in theory) could

be absorbed all at once instead of 'over time' as intended. You might

want to ask your pharmacist or LO's MD and remind the MD that the meds

are being crushed. I don't know if this is currently true of all

'time release' drugs, but that is how we were instructed a couple

years ago.

My mother has been gone almost three years, but reading caregiver

posts here brings back such vivid memories (the sweet and the sad).

My heart goes out to everyone struggling through these very difficult

times.

Kindest regards,

Peggy (from SC)

.............

> Dad is on an antibiotic again. The antibiotics from past experience

make him

> sleep and he completely stops eating. He is now at 96 LB 4 oz. from

last

> weeks weigh in. BEFORE this antibiotic was started. He cannot

swallow the

> pill whole and has to have it crushed. (it is a time released med.)

So the

> med. will leave a metal taste in his mouth.

.............

[Guest guest]

Debbie,

I have tried to write this all day. I have erased and sobbed. You and I

have no control over endings. My Mom was at much the same point your

Dad is at for the last two months of her life.

And you might be there and you might not. I wasn't!

Donna

[Guest guest]

Peggy,

Thank you for your information. As of yesterday we had this medication

changed to a liquid form. The pills were to big for him to swallow safely and

yes the time released med. crushed would have worked just as you said. We

were also told that crushing it would leave a metal taste in his mouth. We

cannot afford to allow him to refuse food as it is so with the metal taste

added would have been disastrous.

Thank You Peggy,

Debbie C.

[Guest guest]

Donna,

I truly give thanks to you for your reply. Just knowing that your Mom for two

months was like my Dad is now has given me comfort. It has shown me that time

is of essence to share more hugs and kisses with my dad. That is something I

have been doing for a couple of months now. I was brought up in a loving home

but hugs and kisses were not shared. I would have been petrified to share a

hug or kiss with my immediate family brothers included. Its not that I

wouldn't want to It is just that it would be uncomfortable for them. I as a

grandma have given lots of hugs and kisses because I want that kind of bond

with them and for them to learn to give them freely.

Mckenna will give me a hug for no reason other then to tell me THAT I NEEDED

ONE as I have told her over time when she gives them freely.

As for being with Dad in the end, it is up to God. If he is taken and I am

not there it was met to be. If I can be here for him, if he needs me to be

there, then it is met to be too. When this monster LBD entered into our lives

and we had to put dad into the NH, I said God, this is now in your hands. I

take this burden off my shoulders and give it to you, I can't carry it alone.

I asked for guidance to help and learn from this. I just sometimes forget

that I gave HIM the burden and ask Him to give dad relief from this.

God in turn tells me >>>It is not his time yet.<<<<<

Donna thank you for giving me a part of you life experience.

Debbie C.

[Guest guest]

Debbie,

I don't always know what to share here. As I listen to Sandie and

Sally, who seem to so have their s#** together, I am angry at the nh

that never called when Mom got sick, and I was up there morning, noon,

and night anyway, and the hospice who helped me move her to the

hospital, and then disappeared until after she died. And then to top it

off, sitting at the hospital and going home and falling asleep while she

died, it is just to much. And all of that was going on while I couldn't

even think and try and figure out what was going on or what I should do

next. I had never sat at a death bed. I asked the kind nurses and MD

what would happen. They told me what USUALLY happen. And none of the

usual happened!

Debbie, for me it was like trying to hold together the 4 corners of a

wind storm. And I couldn't. And I had done a fairly good job of doing

that for 4 years! In the end, I couldn't help her die peacefully. I

wasn't trying to keep her alive. I had done that long enough. I just

wanted her to be able to die peacefully. And she didn't! And I wasn't

there.

As my daughter and I sat vigil, she said to me at one point, " mom, we

treat our animals better than this. " And Debbie, no one wants to say

the obvious, " Your mother is dying. " They like to say things that imply

she might, could, maybe won't, but I didn't know if she was going

through another bad time and might come out of it, or if she was

" shutting down. " They talked about it with themselves, because the

aides made mistakes and indicated that, long before I took her to the

hospital.

So what Sally and Sandie seem to have, which is closure, I am still

struggling for some answers to, and not that it will do any good. But

the funeral is over and I have way to many unanswered questions. And

they are all painful questions. And the answers I get won't change any

thing now. But would I have been able to do any thing at the time with

the information, I'll never know.

Mom had such a hard time, the last two months, because she had thrush.

And they didn't seem to be trying to clear it up. And it affected her

eating and drinking and therefore her strength. I often found her in

bed or in her wheel chair with her eyes closed. She would be awake, and

she wouldn't open her eyes. Then there were times she would just sleep.

But feeding her was a real chore. And the nh answer seemed to be to not

even try and feed her or give her things to drink. I would get there as

they were cleaning up trays, and her straw or silver ware hadn't been

touched. She would eat when I gave her some of it! And I would get mad

at the aides. And I talked to the Admin. and told them " i don't care if

she doesn't eat, I do care that someone tries to feed her. "

I believe she was starved to death and not given anything to drink. But

I also didn't know if that is just what " normally happens. " The nurses

and MD was at her bedside more than once a day at the hospital! And it

was 2 days before I realize she had nothing to drink? But I really

didn't understand what was going to happen or what did happen.

So I would recommend that anyone who has a LO who could pass away in the

next 6 months to find out what might happen and how. What is the nh

procedures and how are those procedures decided. How do you decide to

quit feeding and giving something to drink. It is clear if your LO

quits, as Sandie's Dad did. But all of them aren't going to do that.

And all are not going to peacefully just " stop! "

This was and is very painful Debbie, not because my mother and I were

so close. We weren't. But I wouldn't let anyone die as she did if I

could help it. Mom had " shut down " before and she could spring back.

And did several times. So there wasn't, with her, any nice little order

in the way it happen. I was kept guessing until I just got to tired and

fell asleep! And then she died! Or at least that is how it felt to

me.

I had spent to much time fighting death for 4 years, that I didn't learn

what could happen and or how in the death process. And maybe that isn't

possible with this disease. Maybe it is as individual in death as it is

in life. And I could have been better educated and better prepared to

make decisions at the end. I knew there would be no tubes! There are

more things to do and know. Sorry this is so long.

Donna

[Guest guest]

Debbie,

Sorry, I am rae900. That is my other email account and I get the group

stuff on both. I usually come into here to get my group email and I

answered you before I remembered to change accounts.

Donna

[Guest guest]

In a message dated 11/29/02 7:31:43 AM Central Standard Time,

rae900@... writes:

> I had spent to much time fighting death for 4 years, that I didn't learn

> what could happen and or how in the death process.

Donna

Dear dear Donna, I can't tell you how much I related to your post. Fighting

Death!!!!!!!!!

I know what you mean by going to the NH and finding that they did not even

try to feed or give liquid. I know in my heart if we did not somewhat fight

dad with nourishment every day he would have passed long ago. I myself am

struggling with the food issues between myself and my Mom. I WILL NOT FORCE

FEED! or push the food into his mouth now. MY Mom does to some degree and it

pains me to see it. She told me that she feels that she has to or she feels

like she has failed him.

To possibly ease a small amount of your pain, I feel my dad, as your Mom may

have chose, is what goes into there mouth and what does not go into there

mouth or down there throats. I am finding he chooses things that have some

form of creamy consistency. Pudding forms or whipped forms of food. VERY

LITTLE MEAT if at all and he would spit it out. I think it depends on what

the home served for the day as to weather he ate a small amount of it or

nothing. In this NH I do see aides working with residence who resist food and

I see that they work with them long after others have finished and left the

feeder room. But they cannot force the food into there mouths if the resident

does not want it. I think today my dad will eat a small amount of food just

to make me happy. It seems to be his choice as I think it was posable that

your Mom made that choice between you giving her a bite or two and an aid,

someone your Mom could get by with, without eating anything.

In your post you also mentioned the many many ups and downs with your Mom.

Lord Help Me! I too know that feeling. One day you think this has to be their

last day and peace will find them, to be a little depressed the next day to

see them back to there normal and still struggling for another day with this

disease.

Your post about not knowing what to expect when death does come. I, like you,

will not know when death will come. Because of the ups and downs on a

constant biases with this LBD I don't know anyone who would. So PLEASE don

not blame yourself for not being there. I am so ready for him to have peace,

God can come when he chooses and not when it is the right time for ME. I can

live with that. I have made comments to staff at the NH about how I think his

death coming. He has gone down hill soooo much but is a surviving shell of 96

lb. still somewhat takes liquids and small amounts of food. The staff just

gives me a worm pity smile and won't say a word as to weather they agree with

me or not. Thanks to Sandi, she came for a visit and she gave it to me. I

needed some form of someone confirming my own thoughts.

Donna thank you so much for your post. I am here to share your feelings of

regrets, what ifs, didn't knows. I am walking right behind you.

Debbie C.

[Guest guest]

No Debbie,

I would never force feed anyone. I got to the nh the last few weeks and

found one nurse doing that with Mom. I stopped her immediately. Mom

knew what and when she wanted to eat. I would only offer food and

drink. She could decide to eat or not. That is part of what I mean

when I say staff didn't understand that people know what is going on and

just can't always communicate it.

It would seem to me family should be kept updated about health issues.

And that would include if the patient is " 'closing down. " And if they

are there should be some signs and reasons they think so. With the

thrush which is not very pleasant, Mom's mouth was so sore. She liked

the cold stuff which didn't hurt her mouth like the hot stuff. But I

found the nurse often not giving her the meds for the thrush. I found

out later they could have given different meds that might have fixed the

thrush. I don't think she ever got any of the new meds.

Hospice claimed thrush may not ever go away and that is not what the

research on the web said. And if the decision is made to let them die

of starvation ??? that should be discussed with the family also.

" Course they couldn't do that now could they? Kovorkian is in Jail!!

And he gave people a choice!!!!!!!!!!