Re: not eating, drinking much...

February 17, 2011

Dear Dorothy,

I really feel for you, reading your post. Sometimes a reaction to an antibiotic

is diarrhea - just a thought.

When I'm with my Mom, I, too, find myself welling up with tears, and have to

leave the room, let the tears come, and pull it together and go back with a big

smile on my face.

This is the hardest journey for the person with LBD, and for the family. I

wonder what every new day will bring - will my Mom be ok, will she have

swallowing issues, etc. etc. etc.

We have also had some issues with home care - when they come, they are great,

but I think they are so busy, that there are lots of disorganization issues at

the main office. Last week my aunt called to see what time the nurse

practitioner was coming to see my Mom - morning or afternoon - and she was told

that the NP was ON VACATION!!! and that the next appointment was this Friday.

If my aunt hadn't called, she'd have been waiting a whole day for nothing. We

also needed a prescription called in, and when I called the drug store later, it

seems that the MD did call in the medication.

I called them to discuss what was going on with their appointments, etc. etc.

(there have been other snafus) and they'd already gone home for the day, but the

person who took the message said that she'd fax the message to the head doctor,

and he'd get it in the morning. That was a week ago, and nobody bothered to call

me back. My aunt said not to bother calling, and that she'd talk to the NP when

she comes on Friday. I share your frustration with in home care... while they

are a godsend, they don't always follow through the way they should.

I guess my only advice in dealing with these agencies is persistence,

persistence, persistence...

If it were my Mom, I'd want her treated for the UTI - having had them myself, I

know how uncomfortable and painful they are.

Hang in there with the drinking/eating/swallowing. These things can change from

moment to moment. My mom can have swallowing issues for a few days, and then

eat 3 full meals with no problem another day.

I wish you continued strength in this journey.

Sending you hugs from NY,

Helene

>

> 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

>

February 17, 2011

Joan:

I share your concerns. Your MIL sounds so much like my sister. She eats and

drinks very little. We get her to drink Ensure by telling her it is chocolate

milk. I don't know how she has the strength she has with the small amount of

nutrition that she is getting.

I've had some of the same issues with calling doctor. I know they have other

patients, but this is our loved one and we need help!! The director of nursing

at the assisted living facility suggested we change neurologist and we have an

appointment next month. I understand LBD is hard to treat, but I would like to

find someone who is more familiar and concerned.

In November when my sister was diagnosed with LBD, they stopped her Parkisons

medicine because it was worsening the hallucinations. They said this would

cause her to get stiff. She was talking physical therapy through home health,

but due to her " mental " status they discontinued. I believe she gave them a

hard time about exercising. She can walk and get out of bed with assistance,

but she wants to be in a wheel chair for any distance. She constantly complains

about pain. Yesterday when I went to see her, her chin was down on her chest.

When she lies down it is better, but when she sits up the pain is too much to

hold her head up. Sometimes she prays to die and I don't know what to say!!!

She does have frequent UTIs, but none that has hospitalized her.

I'm going to try a heat wrap on her neck to see if that will help. I've been

using Biofreeze, which is pretty good, but it doesn't seem to be helping.

The Advanced Illness Management program you mentioned, what does this involve?

I may mention this to our Home Health.

Thanks to all,

Re: not eating, drinking much...

Hi Dorothy,

First, I want to say that you are an excellent caregiver for your MIL...and a

wonderful advocate to get the doctors to call (but they aren't) and keeping up

with her vitals and everything.

My Mom was in the mild/moderate stage of LBD and just all of a sudden wasn't

hungry, wouldn't eat hardly anything except for ice cream. I did mix Ensure with

ice cream and tell her it was a milk shake. I gave her some chocolate ensure and

told her it was chocolate milk....but solid food was a whole diffrent story. She

might eat one day and then not for several more days.

The hospital had wanted to put a feeding tube in her, and I asked to have

another week to see if she would start to eat again. When I took her to the

hospital again, they told me that she was in the dying process and feeding tubes

or IV fluids would only prolong her dying. I didn't want to do that to her. If

they were not going to make her well adn let her live more months or years...but

to just prolong her remaining days by being hooked up to tubes and IVs...that

isn't what she wanted.

Your MIL, might just be going through a phase and will all of a sudden start

eating, drinking normally again. You may not know now, but it could happen. But,

you are thinking very wisely...she may be waiting so that your husband and his

sister can speak with her and pour out their hearts before she leaves this

earth. It sounds like your MIL has the most contact with you. Have your husband

get in touch with his sister and tell her that she really needs to come and

visit Mom. That is the first thing that needs to be done so she is able to come

and have some time with her.

My mom always told me that she didn't want to live if she had dementia. With the

fluctuating cognition, she knew she had dementia and therefore I think that she

just lost her will to live. She didn't want to live if she had dementia. Your

MIL may be thinking when in her 'MIL' mode rather than the 'LBD MIL' mode that

she doesn't want to live this way.

A word on hospice: We had hospice for the last two weeks of Mom's life. They

made it so easy to keep her comfortable and Mom actually went through the

process comfortably and her passing was peaceful. I just can't say enough about

our hospice experience.

Please keep us posted on the status of your MIL.

Hugs and prayers,

Joan