Re:About Exiting - and the mystery

[Guest guest]

Well we just went thru it. Sorry if this sounds callous, I don't mean to.

Hospice tells you - your loved one will lose ability to swallow and will not eat

or drink. They go in and out of consciousness, then slip in coma - they say

" don't worry they are not suffering " . Well I worried plenty and wanted to

interrupt these series of events. But thats the way it goes and it usually

takes between 2 and 7 days - for us it took 8 days, I think it was - with no

food or water, because he had a Health Care Proxy in place for no extraordinary

measures to be taken.

I noticed in the 6 weeks of hospice - he would have an unresponsive day, then a

responding day. - like alternate days. I would think - oh if he had a bad day,

then he will have a good day tomorrow. That worked for a while, until he was

completely in coma - for the last maybe 10 days.

I always wondered how it would go - the process - and for us thats what

happened.

Please make sure Health Care Proxy or Living Will is in place, because that

makes things go smoother, to say the least. Dad's was in place for several

years.

[Guest guest]

Kathy,

Your story is so much like mine that I had to make contact. On the 21st of

December I took Mom to her Dr and saw that she had lost 15 lbs recently. She

had been eating and drinking very little the few weeks prior and I suspected she

had some pneumonia. He put her on an antibiotic and gave me a script for

hydration as an outpatient but said I could wait a couple of days to see if she

felt better and started drinking/eating again. On the 23rd she stiffened up

(siezures?) and I had to carry/drag her to her wheelchair. I called 911 and she

went to emergency and got the pincushion treatment so they could get an IV into

her. I have been very stoic throughout her situation but, when this happened, I

got very upset and wondered what the heck I had done. Just two days before this

her doctor and I had decided that we would only treat her for comfort reasons.

In retrospect this was a chance for her to go. Long story short, she came home

a couple of days ago and is in a hospital bed in our home. I have a hoist, a

bedside commode, etc. I am staying home from work this week (I am a teacher) to

try to figure out how to take care of her. She mostly sleeps, has days when she

cannot communicate and days when she can say some whole sentences. She barely

eats or drinks and every time I put her on the commode she passes out and I have

to figure out how to get her back to bed. I am learning how to use the bedpan

but she won't go in it, anyway. She wont go in the pull-ups at all. The couple

of times I've seen the CNA use the hoist, Mom passed out then, too. At this

point I don't know if she will succomb to starvation, dehydration, or if her

heart will go becuase of this orthostatic hypotension. I keep thinking long

term but don't see how she can stay with us because of these three things, so I

constantly have to adjust my thinking. This is where we are now. A month ago I

thought we had years left. She was walking, talking, and eating. I also

believe the weight loss is a sign--it was for us.

(daughter and caregiver of Lois--86)

>

> Hi, . My condolences.

>

> Thank you so much for sharing your experience. I've wondered how it will

> happen (even though I've read a lot) and how I will handle it. I suspect

> that I'm going to have a tough time with it, too. Though I'm Mom's POA, I

> specifically had her appoint my sister as medical representative for just

> this reason. Mom could have made some fairly gentle exits a couple of

> times since her LBD diagnosis, but I panicked and took her to the ER, which

> set in motion all of those " life saving " activities. Seeing her life now

> makes me feel guilty about not handling those opportunities better and

> grateful my sister will be able to make the necessary decisions.

>

> I thought hospice would be a long way off. And maybe it is. But Mom's NP

> used the word and told me that Mom has lost 14 pounds, which she says is an

> indicator. The other day we had Mom at a shopping mall and I saw my sister

> pushing Mom in her chair toward me. She looked like she had lost a lot

> more than 14 pounds. I don't know whether to be relieved that this is

> happening or worried. It could still be a long way off, but preparing

> myself mentally will, I hope, help me handle it gracefully. Sharing your

> experience will go a long way toward that.

>

> Kathy

>

[Guest guest]

Hi C,

I thought I'd said it but looking back I see I did not. We signed up with

hospice before she came home so all of our equipment was ready when she got

here. We had a catheter put in about an hour ago. We had to weigh the

discomfort of having it put in against the constant stress of needing to go and

the stress of repeatedly losing consciousness. I was also really worried about

hurting her after she passed out. The hospice we have is fantastic. Everyone

has been so nice and helpful. However, at the end of the day (4:00) It is my

sister and me. When she goes back home it will just be me. My impression is

that hospice is there when we need them but they don't just stay. Maybe they

will when we are at the end, if it is obvious.

(daughter and caregiver of Lois-86)

> >

> > Hi, . My condolences.

> >

> > Thank you so much for sharing your experience. I've wondered how it will

> > happen (even though I've read a lot) and how I will handle it. I suspect

> > that I'm going to have a tough time with it, too. Though I'm Mom's POA, I

> > specifically had her appoint my sister as medical representative for just

> > this reason. Mom could have made some fairly gentle exits a couple of

> > times since her LBD diagnosis, but I panicked and took her to the ER, which

> > set in motion all of those " life saving " activities. Seeing her life now

> > makes me feel guilty about not handling those opportunities better and

> > grateful my sister will be able to make the necessary decisions.

> >

> > I thought hospice would be a long way off. And maybe it is. But Mom's NP

> > used the word and told me that Mom has lost 14 pounds, which she says is an

> > indicator. The other day we had Mom at a shopping mall and I saw my sister

> > pushing Mom in her chair toward me. She looked like she had lost a lot

> > more than 14 pounds. I don't know whether to be relieved that this is

> > happening or worried. It could still be a long way off, but preparing

> > myself mentally will, I hope, help me handle it gracefully. Sharing your

> > experience will go a long way toward that.

> >

> > Kathy

> >

>

>

>

>

>

[Guest guest]

Hi everyone,

I am hanging in there. It amazes me how little I am doing and how drained I am.

I am fortunate in that my mother had purchased insurance that provides for a CNA

in the day and that my sister is still here and is in no hurry to leave. I

guess any time there is something that you can't stop thinking about it can wear

you out. The catheter is working out well except that Mom still tells us she

needs to go to the bathroom sometimes. I also am sad that she is completely

bed-bound now as I was hoping we'd be able to have her in the wheel chair every

now and then to get her into a different room. I don't know that she would

appreciate it anyway. My sis and I are talking about the need to adjust our

thinking from the natural urge to want to nourish someone to the respect for

Mom's desire to stop being nourished. I think making this mental adjustment

will help at the end to keep us from feeling like we failed and more like Mom

controlled her departure (if that makes any sense).

As far as taking her for respite care, C., she just got home and right now

I don't think she will be with us long enough to need that service, although

reading some of your posts I can't help but wonder if this stage will be a

longer one than I anticipate.

(daughter and loving caregiver of Lois-86)

> > > >

> > > > Hi, . My condolences.

> > > >

> > > > Thank you so much for sharing your experience. I've wondered how it will

> > > > happen (even though I've read a lot) and how I will handle it. I suspect

> > > > that I'm going to have a tough time with it, too. Though I'm Mom's POA,

I

> > > > specifically had her appoint my sister as medical representative for

just

> > > > this reason. Mom could have made some fairly gentle exits a couple of

> > > > times since her LBD diagnosis, but I panicked and took her to the ER,

which

> > > > set in motion all of those " life saving " activities. Seeing her life now

> > > > makes me feel guilty about not handling those opportunities better and

> > > > grateful my sister will be able to make the necessary decisions.

> > > >

> > > > I thought hospice would be a long way off. And maybe it is. But Mom's NP

> > > > used the word and told me that Mom has lost 14 pounds, which she says is

an

> > > > indicator. The other day we had Mom at a shopping mall and I saw my

sister

> > > > pushing Mom in her chair toward me. She looked like she had lost a lot

> > > > more than 14 pounds. I don't know whether to be relieved that this is

> > > > happening or worried. It could still be a long way off, but preparing

> > > > myself mentally will, I hope, help me handle it gracefully. Sharing your

> > > > experience will go a long way toward that.

> > > >

> > > > Kathy

> > > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Dear ,

I'm sorry for everything that is on your shoulders.... We suffer as we watch

our loved ones go through their struggles, and your has just had more added

to his plate.... and so, there is more on your shoulders.....

Sending you strength and hugs,

Helene in NY

> > > >

> > > > Hi, . My condolences.

> > > >

> > > > Thank you so much for sharing your experience. I've wondered how it will

> > > > happen (even though I've read a lot) and how I will handle it. I suspect

> > > > that I'm going to have a tough time with it, too. Though I'm Mom's POA,

I

> > > > specifically had her appoint my sister as medical representative for

just

> > > > this reason. Mom could have made some fairly gentle exits a couple of

> > > > times since her LBD diagnosis, but I panicked and took her to the ER,

which

> > > > set in motion all of those " life saving " activities. Seeing her life now

> > > > makes me feel guilty about not handling those opportunities better and

> > > > grateful my sister will be able to make the necessary decisions.

> > > >

> > > > I thought hospice would be a long way off. And maybe it is. But Mom's NP

> > > > used the word and told me that Mom has lost 14 pounds, which she says is

an

> > > > indicator. The other day we had Mom at a shopping mall and I saw my

sister

> > > > pushing Mom in her chair toward me. She looked like she had lost a lot

> > > > more than 14 pounds. I don't know whether to be relieved that this is

> > > > happening or worried. It could still be a long way off, but preparing

> > > > myself mentally will, I hope, help me handle it gracefully. Sharing your

> > > > experience will go a long way toward that.

> > > >

> > > > Kathy

> > > >

> > >

> > >

> > >

> > >

> > >