Re: Re: Dorothy - MIL in process of dying

[Guest guest]

you and your family have our sincere condolences. I followed your

father's plight as my mil was going through her end phases (and still is).

Now that we have a little hindsight we can see that my mil was really putting up

a fight and for quite some time. There were times that she said she didn't care

and she wanted to die but later said she wanted to live and would make efforts

to drink and eat and so on. My husband thinks that once she finally started

hospice and they helped with the talks of leaving and we actively reassured her

that we would all be ok, that she began to let go. We went from talking about

death last week to being very close now in just two weeks. I think my husband

is correct in his theory with this. He said the morphine is probably helping

her let go. She is doing ok now - for the time being. She is in a mostly

sleeping state with the morphine drops every hour. She is also getting atropine

to help with the secretions that were causing her to wake up choking and

glycerin swabs to make the resulting dryness in her mouth a little more

comfortable. I hope we can keep her comfortable this way as she lets go.

None of this is how I thought it would be. Just yesterday the caregiver got

her up and walked he'd to the bath for a shower. She had asked for several

specific foods and told everyone how hungry she was through the day. One

hospice nurse two weeks ago had remarked how surprised she was that she wasn't

in bed. My mil worked hard with PT because she did not want to be confined to

bed and it looks like that paid off for her.

She had some restless legs stuff going on a few hours ago. She has benefitted

from a very low dose of mirapex at night when this happened si I crushed up a

tablet and mixed with honey and water and this also helped her leg pain so she

could sleep. What a strange journey this is!

- Dorothy

from cell phone

> Ok Dorothy

>

> My father in late stages who died last Friday was screaming HELP,

hallucinating - shaking the bed rails, trying to get up - could not do that at

all, though - First Hospice R.N. had us give him drops of Morhpine in his cheek

for absorption - could do every 4 hours. He aspirated and choked on that, so

then they put an IV or some kind of morphine pump on his arm - continuous

Morphine flowed and if he got agitated or had those death seizures, you could

push button for additional Morphine. He was in a coma for about 6 days then.

>

> When you tell the Hospice nurse what happened, she should put the pump on for

continuous morphine. I would not do tha Haldol as that makes LBD hallucinations

worse. We only did liquid Prozac and Ativan. Then just Morphine and he slipped

in coma - did not eat or drink anything for 8 days.

>

> I hope you have good Hospice program coming to your home to assist in this

process.

> I will pray for you.

>

>

>

>

[Guest guest]

,

You are right, I do do get it. But don't blame yourself please. It was all his

choice and his time to let go. It is their journey - not ours. The storm -

what an iconic event to bring that on. I might be really wondering if he had

some inkling that a storm like that could help him out? I don't know your

father but this would be something my own father might do. I have been thinking

how did this happen so quickly with my mil - I have seen to it that she had such

good care and just never expected the end could be do quick and sudden. She was

just smiling but now gasping and her breaths rattling. I was also looking for

something I could have done different. But after talking with my husband I

recounted the last several months and there were times she was tired enough to

tell me, to tell us all, that she didn't care she was ready to die. It was hard

to get up, hard to eat and swallow and walk and stay awake during the day and

hard to sleep at night and be alone. I think this is her time it unfortunately

it isn't always easy to die and there's this process of the body shutting down

and the mind letting go and these things all have there own timelines and here

we are trying to figure it out.

Today we were very happily surprised to hear my sister in law and her husband

were able to get away for a day, get a flight and be here a few hours with her.

I had been so worried that she would not make it to the third when they planned

to come for a visit. Now they will all have these last precious moments

together and I hope no regrets.

We do our best - you did your best - there is nothing more but to love them as

they go, as they are gone. A very wise person told me many years ago that

when a person dies there is this process of letting go and all that is known and

felt from there on is love. This is a universal idea in many cultures and

spiritual practices and something I completely believe.

I am wishing you much peace in your heart in this time of grieving.

- Dorothy

from cell phone

> Thank you for writing Dorothy - it is and was all so strange and mysterious.

Its a process. The Hospice RN said it would be days, maybe one to 2 weeks. Of

course we didn't want it, but we sort of wanted it when things were so awful.

Dad always ate well, but then lost ability to swallow and went into a coma - and

lived think it was 8 days with no food or water. No feeding tubes or IV's for

fluids, because he had the Health Care Proxy in place - and wanted no

extraordinary things done to keep him alive. I think he was in a coma for over a

week - so first he lost ability to swallow, and communicate - he couldn't think

or talk to us - hey I'm hungry or that he wanted to get up.

>

> He had successful Physical Therapy in April 2010 and in June 2011. He was

walking around and talking one week before the big dramatic downturn. He was in

Hospice at home for 7 weeks. The last 8 days, truly traumatic for me and I don't

know if I can get over it.

>

> I think I am having so much anxiety right now because we had the Halloween

Nor'easter and lost our electric and our heat - at my house and at my parents

house - along with 500,000 or so other people in CT and MA and all over. He

refused to leave the house and I did everything to convince him to leave -and

come to hotel or a warming shelter at the high school. Long story short, he said

" NO - my mind is made up and I am not leaving home " . He said that standing in

the kitchen with me. Three days later, he couldn't get up at all and the choice

was hospital or Home Hospice and my sister said Home Hospice. The RN said he is

in the process of dying. And he did on Dec 16.

>

> I feel I should have done more to get him out of house. But long story short,

we did get a small generator and a small heater and put him in the family room.

Aides came day and night and hospice came every day. I think the only way to get

him out of there would be legally and that would wreck our loving relationship

and he was failing very fast at that point. The temperature was in the 20's and

you could see your breath- so cold.

>

> It was a combination of events - the power outage, Connecticut Light and Power

- not responding or trying to help us, and then lying about when the power would

be restored. It took 10 days. 10 days of taking care of someone that is dying -

with no heat or electric. No one deserves this - especially Dad and our family.

And the fact that he was on a downturn regardless of whether we had electric or

not. I just want to be mad at something.

>

> My mom and sister do not want me to go crazy and do anything to draw

attention, so I have held this in. I guess I am venting right here. I wrote the

eulogy, which helped when I wrote it. I made the poster board of pictures for

the funeral. I picked a prayer for the pastor that comforts me - " For everything

there is a season " . I just feel guilty right now and I really do not want to be

without Dad. I feel changed by this. I don't even like my husband right now, and

I am mad at him - not sure why. When I feel better, I want to raise money for

LBD research or do something in that area.

>

> Thanks for letting me vent. - it helps when I let stuff out and I know you

will get it.

>

>

>

>

[Guest guest]

Hi, ,

Yes - I get it, too.

Recently I read this and printed it out:

http://grief.com/the-five-stages-of-grief/ 

What made me think of it was your line " I just want to be mad at something. " I

GET it.

Maybe this article will explain that to you and how normal it is. But I know

when my mother died and I read something about the stages of grief, I couldn't

make any sense out of it - it was like a foreign language to me. But after my

Dad died in September, the stages made so much sense. So, sometime, maybe it

will be helpful.

Ellen in OH

________________________________

To: LBDcaregivers

Sent: Monday, December 26, 2011 2:59 PM

Subject: Re: Dorothy - MIL in process of dying

 

Thank you for writing Dorothy - it is and was all so strange and mysterious.

Its a process. The Hospice RN said it would be days, maybe one to 2 weeks. Of

course we didn't want it, but we sort of wanted it when things were so awful.

Dad always ate well, but then lost ability to swallow and went into a coma -

and lived think it was 8 days with no food or water. No feeding tubes or IV's

for fluids, because he had the Health Care Proxy in place - and wanted no

extraordinary things done to keep him alive. I think he was in a coma for over

a week - so first he lost ability to swallow, and communicate - he couldn't

think or talk to us - hey I'm hungry or that he wanted to get up.

He had successful Physical Therapy in April 2010 and in June 2011. He was

walking around and talking one week before the big dramatic downturn. He was in

Hospice at home for 7 weeks. The last 8 days, truly traumatic for me and I

don't know if I can get over it.

I think I am having so much anxiety right now because we had the Halloween

Nor'easter and lost our electric and our heat - at my house and at my parents

house - along with 500,000 or so other people in CT and MA and all over. He

refused to leave the house and I did everything to convince him to leave -and

come to hotel or a warming shelter at the high school. Long story short, he

said " NO - my mind is made up and I am not leaving home " . He said that standing

in the kitchen with me. Three days later, he couldn't get up at all and the

choice was hospital or Home Hospice and my sister said Home Hospice. The RN

said he is in the process of dying. And he did on Dec 16.

I feel I should have done more to get him out of house. But long story short,

we did get a small generator and a small heater and put him in the family room.

Aides came day and night and hospice came every day. I think the only way to

get him out of there would be legally and that would wreck our loving

relationship and he was failing very fast at that point. The temperature was in

the 20's and you could see your breath- so cold.

It was a combination of events - the power outage, Connecticut Light and Power -

not responding or trying to help us, and then lying about when the power would

be restored. It took 10 days. 10 days of taking care of someone that is dying

- with no heat or electric. No one deserves this - especially Dad and our

family. And the fact that he was on a downturn regardless of whether we had

electric or not. I just want to be mad at something.

My mom and sister do not want me to go crazy and do anything to draw attention,

so I have held this in. I guess I am venting right here. I wrote the eulogy,

which helped when I wrote it. I made the poster board of pictures for the

funeral. I picked a prayer for the pastor that comforts me - " For everything

there is a season " . I just feel guilty right now and I really do not want to be

without Dad. I feel changed by this. I don't even like my husband right now,

and I am mad at him - not sure why. When I feel better, I want to raise money

for LBD research or do something in that area.

Thanks for letting me vent. - it helps when I let stuff out and I know you will

get it.