RE: Re: not eating, drinking much...

[Guest guest]

I want to thank each and every person who responded to this post of mine.

Everyone provided valuable insight and support and I used every bit of it!

How things have progressed since - I talked with my husband about how I

feel trying to make her eat and especially drink all the time - I am worn

out at the end of the day and all of our time together is focused on this

issue which is made even more difficult by the fact she doesn't feel like

drinking and eating. I told him I don't feel this is giving her any quality

of life and it certainly is not doing anything for me. I gave him some

material to read about preparing for end of life and what sort of things

might be expected. I told him I felt it was time we focused on making the

time quality and not pushing to make quantity anymore - it's all going to

the same place eventually and there's no getting around it (he knows but

maybe a little denial stage in there). He said it would be good to not

push things anymore and if she wants to eat and drink that's great but we'll

just not push it. Even though we both felt grief with this new phase we

felt relief at the same time. When it's over, whenever that might be, we're

going to go away for a bit and recover and reconnect. It's one nice thing

to look forward to and I'm sure there will be times I need something like

that to think about to get through.

After talking these things over we asked for time with her home health nurse

to talk things over with. Her nurse went through this with her mother in

law for three and a half years so she is very understanding and helpful for

us. She suggested we get all we can through home care before moving into

hospice because there's some services we could use that we can access

through home care. Then in a week or two we can ask to transition to

hospice and speak to their team about making arrangements that fit us. I

feel really good about this now and I think we are all making this

transition smoother now. I felt like I got a breath of fresh air!

I did manage to get her hydrated by the heavy pushing of " drink drink drink "

and get the diarrhea stopped and I did such a good job that her lower legs

and feet got swollen from edema (and not moving about). Her mobility is

terrible now, barely able to ambulate. As I was holding her to keep her

from falling yesterday while walking to the bathroom, I was amazed feeling

a lot of muscles working but not working together and the result was she

couldn't go far at all and was exhausted from the effort of trying to walk.

We took the outer rim off the wheelchair wheels (it's for the user to self

propel) and gained 3 " and took the door off the bathroom so now we can

squeeze the wheelchair through all doorways.

My mil does not remember the conversation about LBD but remembers

Parkinson's. She does not seem to be aware she has a terminal illness at

the moment. Or maybe it's a denial stage, not sure. There has been an

obsession of " am I dying? " the last few days. She asks this frequently.

She tries to start conversations with the part time caregivers, " they say

I'm dying... " . She is fishing for information but I'm not at all sure how

to deal with this and hoping the hospice folks might have more experience.

There was a time that she understood - or we all had the talk anyway. Maybe

she thought it would change or maybe she forgot, not sure. I'm aware of

the various stages of death and dying, having read Kubler Ross's

On Death and Dying and subsequent books years ago. I'm just not familiar

with how that might work with the memory/cognitive issues of LBD.

Two days ago I was seriously wondering if she would last a month. Yesterday

we stopped pressing fluids and food but we did have some nice " comfort food "

that she likes for dinner. Today she is really perked up, smiling,

laughing but still barely able to ambulate. She could be like this for

years perhaps - that is how quickly her status changes. I'm seeing new

ripples in the roller coaster. I think there's several tracks to it!

And I have a shopping list for this next phase I'm working on: wheel chair

ramp for access to house that's about 6 feet vertical gain, bed pad, wheel

chair pad, small transfer chair, double hinges for the doorways for more

width (we have a TINY house with narrow doorways), second commode, over bed

table, body props for turning, posey boots to prevent heel sores, different

diapers for nighttime or days she's unable to get up. I am seeing that

with these new major phases comes a whole new list of equipment needs.

-Dorothy

[Guest guest]

Yes, she is on Risperadol!

Re: not eating, drinking much...

Is your sister taking Rispradol? My mom could not hold her head up without

severe pain when she was taking that.

> >

> > The latest marathon for us.

> >

> > My mil was in hospital 4 days with another UTI that was going into sepsis.

> > What a horrible ordeal this is becoming.

> >

> >

> >

> > Her doctor's office reorganized with new affiliation with the St ph

> > hospital chain and it is almost impossible to get things accomplished now,

> > including a quick follow up UA ordered via home care to see if the UTI was

> > cleared up or not. Her last septra ds was Sunday Jan 30 and she was so much

> > better, happy, walking, eating and drinking fairly well but by Wednesday,

> > Feb 1 she was cranky and tired and another fever and it was obvious to me

> > she should be put back on the septra however her nurse with Home health was

> > off for the rest of the week and no one forwarded my calls to the RN on call

> > and my calls to her doctor (several a day) went unanswered. Her temp went

> > up that Friday. Sunday am, a week after ending antibiotic, she had diarrhea

> > and vomiting and we took her to a hospital ER and the doctor told us she had

> > viral gastroenteritis and a uti and take her home and make her drink water

> > and call her doctor in the morning. That Monday, Feb. Feb 7 called her

> > doctor's office, was told he's with patients, left another message. Called

> > again at 11:30 am, called again at 3pm. Snippy office staff tell me

> > everyone's with patients and they have my messages. I can tell they are

> > irritated with my phone calls by now. 4pm her temp went up and she went

> > into another world so I decided we would go to another ER. They ended up

> > admitting her with uti, dehydration and sepsis. They kept her 4 days and

> > we had someone there round the clock so no one would aspirate her with

> > giving pills or food/drink. She got very nicely plumped up with the iv

> > fluids and had a infection that ampicillin would take care of so we came

> > home. They did a fecal for viral gastroenteritis and c-diff and both are

> > negative. So the first ER doc was way off on that. But still no

> > explanation for the persistent diarrhea.

> >

> >

> >

> > She's a little better than when she got home but the diarrhea continues - it

> > never stopped. She is getting dehydrated again rapidly and I can barely get

> > two glasses worth of liquids in her a day. She does not want to drink

> > anything but coffee with a lot of cream and sugar and even that she doesn't

> > want much. She's almost fighting about pills in the applesauce. and even

> > her favorite foods she wants just a little and that's it. I've been giving

> > her applesauce as if it has pills just because it has some liquid in it and

> > she doesn't argue with me like she does with the caregiver.

> >

> >

> >

> > I don't know what to do. She tells me she wants to get better. I tell her

> > she has to do it for her, not for us. That we are happy with whatever her

> > decision is. If she wants to have a peaceful end of life we support her

> > 100%. If she wants to fight and get " better " as she was before hospital

> > we'll support her in that, whatever she wants. Even when she tells me she

> > wants to get well I have the feeling she's just saying that for our benefit.

> > I have in the last three days had serious talks with her explaining hospice

> > and what happens and also why I'm telling her (because it's coming to the

> > point even home health is suggesting it). I don't know if I should push to

> > try and keep her hydrated with some kind of iv fluids and see if she can

> > recover or if I should just go with hospice now. I think if we did go

> > with hospice she would probably be gone in a month or two with the not

> > eating/not drinking much. We have a different home health agency now, in

> > hopes they will be more attentive to her needs. They have a program called

> > Advanced Illness Management that Medicare covers and is considered a

> > precursor to hospice. This is through Sutter VNA, who also provides hospice

> > services that are less militant than the other outfit in town.

> >

> >

> >

> > I always had it in my mind that she would be bedbound and barely able to

> > move if she was going to die from LBD but now I wonder if my idea is way

> > off? There is nothing else medically wrong that could be causing the

> > appetite and thirst decreasing. That's what the hospitalist told us and he

> > was her private doctor for 11 years before he closed his private practice

> > (we were all very happy with this doc, he is a great diagnostician and takes

> > whatever time required to figure out what needs to be done). Everything

> > I've read about end of life with LBD people are bed-bound and barely able to

> > move. My mil can still get up out of bed with a little assistance and walk

> > with assistance and even walk up and down the 7 steps at the front door with

> > assistance and climb into my suv with assistance. Most of the assistance

> > she needs is with balance/fall prevention and coaching (lift feet, move

> > toward me, reach up here, etc.) She's worked hard in physical therapy and

> > exercise and I'm wondering could she have exercised enough that she's truly

> > at the end of life stage of this disease and still able to move about?

> > Everyone is impressed by how strong she is, even if she were not ill and a

> > normal 93 year old. I think maybe this is what is really throwing us off

> > here. Granted her moving is with more and more effort and is much harder

> > than it was a few months ago. And even swallowing is with great effort.

> >

> >

> >

> > Anyway, this is our dilemma, is it time for hospice or should we give her

> > more time to recover from the uti? Even recovery from the uti is now in

> > doubt as they are talking about keeping her on antibiotics because she is

> > not taking in enough liquids to keep things flushed out and eventually we

> > are told she will likely get a uti that will do her in. Some have

> > suggested tubes - and unfortunately because of the massive giant hiatal

> > hernia she has no one will try to place any kind of tube, j, peg or ng. IV

> > is suggested by speech pathologist due to the problem she has drinking

> > fluids, but home health wasn't too keen on that.

> >

> >

> >

> > My grief has been right up in my throat again today and I've had to run to

> > the back room to cry then dry my eyes then come back smiling for a while

> > longer before I choke and have to run back and cry again. I'm going to miss

> > her so much but this is about her and what she needs, not what I or my

> > husband needs. We have not even tried to talk to his sister about this yet

> > as she is very out of touch with this and send a huge box of chocolates with

> > nuts for Valentine's Day. Sigh. Sorry I'm pretty tired and this is

> > probably sounding very scattered.

> >

> >

> >

> > Really appreciate hearing thoughts. Thank you.

> >

> > Dorothy

> >

> >

> >

> >