Our experience with LBD

[Guest guest]

I have not posted anything, but have been " lurking " for several months.

The information i have been reading here has been very helpful.

My dad had multiple myeloma cancer as well as LBD. His battle had been

a roller coaster. There were times he was physically and cognitively

doing very well, and other times when he had " episodes " of agitation,

restlessness, hallucinations etc etc. More recently He had been doing

very well, walking every day, eating well, and engaging with the

family, even riding in the car and doing short errands with us. He had

been steadily declining for the last year in spite our best efforts, so

were very please to see him doing much better. He very suddenly took a

sharp turn for the worst. There was no obvious explainable reason. We

took him to see both the PCP, senior neurological specialist, and

oncologist. No one could explain his sudden turn. They did every test

imaginable.

Within a few days he completely stopped eating, and in a few more

stopped drinking. He had began falling again during this time. We

promised my dad a long time ago we would not put him in a nursing home,

so we hired a hospice nurse to help us. We took shifts sleeping in his

room so we could hear if he tried to get up. The hospice nurse told us

he was " in the active phase of dying " . This process can take anywhere

from 1-2 months she told us. Of course we mentioned how well he had

been doing just a few weeks prior. She said that was very normal. They

often get a surge of energy and virtually resume normal life, but it

only last a few day or weeks at the most. It lasted two weeks for him.

We contacted two more hospice agencies for second opinions. They said

the same thing. Within 3 days of contacting the first hospice person he

started in with the infamous " death rattle " . The nurse gave him meds to

help him.....atropine I think......we also started to notice that his

hands and feet were very mottled and gray/blue. He had been refusing

food for 2 days, and on the third day, refused water. We tried swabs

with Gatorade as his diaper was completely dry. He would spit out the

swab and become agitated. His body temp fluctuated between feverish and

cold. The nurse said that was a very normal process of his body

shutting down. He died 48 hours later. We were able to honor our

promise to him. He died with his whole family around him. My husband

read and sang to him, my mom held his hands, my teens sat by his side

with a cold cloth on his face (he had always loved that), and I sat

nursing my newborn. It was very peaceful.

His funeral is today. He will be missed, but we are very happy for him.

He is cancer free, pain free, and watching us from heaven.

I have heard many similar stories. We tried to keep fighting for him,

but in the last few days, it was obvious he was done. He was ready to

go " home " . He had fought cancer and LBD well, but he was obviously

done. He had seen all my kids birthdays (they are all within 6 weeks of

each other), seen the new baby, saw my oldest graduate, saw the full

length play my teens had been working on for 8 months, and was all

done.

We are very happy that he will suffer no longer.

My Sister - Update

 

Since probably 6/11, my sister hasn't hardly eaten or drank anything.

Her kidneys did not work at all this past Sunday. The Hospice nurses

said her body is reserving it since she isn't drinking anything or

eating. It takes two or three people to get her to the bathroom and by

the time we get her to the bathroom she will become unresponsive. Once

she lays back down she will come back around. She yells out in pain

when we have to move her, even though she is on the Duragesic patch.

Her bottom looks awful. The Hospic nurses says her vitals are good.

I've asked them if they think we are nearing the end, and they don't

think so, but how much longer can she go without eating or drinking.

She will occasionally drink a little, but not much and she becomes very

agitated when we try to get her to eat or drink.

They said they have only seen one other patient that was diagnosed with

LBD. He was a man and became very aggressive. She hasn't but she is

so weak I don't think she could raise a hand, although she does get

verbally aggressive.

Can anyone give me some input. I believe LBD is so unknown even to the

medical profession that they really don't know what to expect.

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