Re: Re:About Exiting - and the mystery

January 4, 2012

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

> **

>

> 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.

>

January 4, 2012

--It sounds as though it's time to contact a hospice provider. I know this

is difficult, but once the weight starts dropping--well, it isÂ a sign. A

hospice house can give her the care she needs and you the rest you will need.

It's tough (I just went through this with my father) but having the help of

hospice at this time is priceless. We were able to be with my father without

worrying about bathroom issues etc. We could just be there to love him instead

trying to provide nursing care.

Â

Good luck

C

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________________________________

To: LBDcaregivers

Sent: Wednesday, January 4, 2012 2:42 PM

Subject: Re:About Exiting - and the mystery

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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

>

January 5, 2012

Unfortunately,

Hospice does not usually provide round the clock care, unless the family

caregiver is worn out and then they will provide respite care for a period

of time. In most cases, the hospice CNA or nurse will only come to the

home for a short visit to check on the patient, or to provide specific

procedures, such as cathatarizations that the family is not able to do.

The rest of the time you, the caregiver are alone with the person and it is

your responsiblility to do all of the needed care.

Pat M.

58, wife/caregiver to Bob 75, dx PD 2003, LBD 2009

> **

>

> 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

> > >

> >

January 5, 2012

True, hospice will not provide around the clock care unless your loved one is

criticle enough to be moved to the hospice house. At least, that's the way our

provider worked. We asked the nurse for a respite slot and she told us that Dad

qualified for acute care. We were surprised because he was still talking etc.

She called and checked for an available bed and within 3 hours, he was

transported to the hospice house. He passed away less than 48 hours later.

It sounds like your mother is failing quickly. You may wish to consider asking

the nurse if she qualifies for care at the hospice house. Ours was wonderful and

it made those last days doable.

C

________________________________

To: LBDcaregivers

Sent: Thursday, January 5, 2012 5:53 PM

Subject: Re: Re:About Exiting - and the mystery