Re: My Mom and LBD/Parkinson's Disease

June 13, 2011

How sad at the end. Everything you mention is veryÂ similar to my husband's

experiences and he was diagnosed with LBD by his neurologist, andÂ he was

allowed to have Hospice at the end. I do believe Hospice helped my husband over

atÂ the end. I stayed with my husband for 3 nights and slept in his room at the

nursing home. Hospice would come in the mornings. They told me on the first

night, it lookedÂ like he would go that night, and then the next night. My

husband had a will to live and was all bones and hadn't eaten or drankÂ in 6

days. He could no longer swallow. He did not want any life supports such as a

feeding tube in his Health Directive and the doctor followed that. Hospice came

on the 4th morning and my husband had very shallow breathing, but was still with

us. It was sad to see him like that. I told him several timesÂ it was okay to

let go and that we would all be fine and not to worry about us, but he said, " O "

meaning " No. " He had been as

needed on an Oxygen Machine, not a tank and the Hospice Nurse brought in a tank

and told me she was going to give him some pure oxygen toÂ help him, and I

believe it was something else to help him pass, so he wouldn't suffer,Â because

he was hanging on with the oxygen machine, but after the tank he went peacefully

very soon after. No matter how you look at it when a loved one dies it is very

hard to see and I'm sorry your mom may have suffered at the end.

Subject: My Mom and LBD/Parkinson's Disease

To: LBDcaregivers

Date: Monday, June 13, 2011, 5:37 PM

Â

My Mom passed away on Oct 7, 2010. For the last three years of her life, she was

in a health care center here in Massachusetts. She was a wonderful Mom, giving,

caring, unselfish, always putting our needs before her own.

In October, 1999, we took my Mom to a neurologist. She had been complaining of

dizziness. She thought it was her glasses. The neurologist told us that she had

" mild symptoms " of Parkinsons. She was also experiencing anxiety, so he told us

not to tell her of the Parkinsons at that point in time.

Within two or three years, she began to exhibit further symptoms of

Parkinsons......stiffness, rigidity etc on a mild basis. She would also tell us

that she was having trouble remembering things. At one point, we ended up

telling her that she had Parkinson's. It was so hard for us to tell her, and she

was more concerned for *us*. She told us not to worry that we had told her and

that she was okay.

She was living independently in her own apartment, downstairs from my sister (a

nurse), who was the one responsible for her meds, checking in etc. Over time,

our Mom could not figure out her meds (even though they were all marked by day

for her), she could not operate the remote control for the TV, could not operate

the microwave and didn't answer the doorbell. She couldn't dial the phone (even

with the telephone numbers right there for her.) We took her to Boston, to

Brigham and Women's Movement Clinic. No one ever diagnosed her with Lewy Body,

but we figured it out on our own over time. The dr's in Boston tried different

meds (Seriquol and others) but she would have halucinations, seeing animals and

children. She would be up in the middle of the night, putting some things in a

trash bag and sitting on the couch until someone came in. She would say that she

was going to meet my Dad at the ship.

She fell several times, and a couple of those times were out of her bed during

the night (we bought her a very low mattress).

Finally, we had to make the very sad decision to have her go to a Catholic

nursing center (she was very devoted to her faith). It was a wonderful facility,

but when we left her there the first day, she cried and we felt so awful and

terribly guilty!!! We always told her that we would never put her in a nursing

home.

She declined steadily over a three year period. She didn't know us, had no

memory, had terrible rigidity and eventually lost the ability to swallow. We had

to make the decision to stop feeding her. She couldn't even swallow water. It

was heartbreaking. For nine days, she laid in bed, with no food or drink. They

kept her comfortable (but not really...minimal meds) She was coughing, choking

etc. We asked for more pain meds for her but they kept that at a minimum. We

wanted Hospice, but they would not go along with that. All in all, we felt that

our Mom died a long, slow, painful death. No one ever really told us if it was

Parkinson's Disease or LBD............we did have one dr in the beginning who

diagnosed her with LBD and I do think that was what it was.

A beautiful lady suffered for ten years..........we were devastated when we lost

her.

June 13, 2011

My condolences on the loss of your dear mother.

Why did the care facility not allow hospice? I have never heard this before.

It doesn't sound like you made the decision to stop feeding her. It sounds that

decision was made for you because she lost the ability to swallow. If the care

facility didn't allow hospice, I wonder why that didn't force your mother to get

a feeding tube? What a strange policy for that care facility.

Even if an MD had said your mother had Lewy Body Dementia, that would not have

provided confirmation of the diagnosis. The only way to get a confirmed

diagnosis is through a brain autopsy. Less than one-quarter of all clinical LBD

diagnoses turn out to be LBD upon brain autopsy. Even well-regarded LBD experts

make mistakes. And well-informed caregivers make mistakes too. It's a very

hard diagnosis to get right.

You treated your mother's symptoms, and that was the best anyone could have

done.

I hope eventually you can focus on the many years of good times your mother had

and put the sad thoughts of her final few days in the background.

Good luck,

Robin

>

> My Mom passed away on Oct 7, 2010. For the last three years of her life, she

was in a health care center here in Massachusetts. She was a wonderful Mom,

giving, caring, unselfish, always putting our needs before her own.

>

>...

> She declined steadily over a three year period. She didn't know us, had no

memory, had terrible rigidity and eventually lost the ability to swallow. We

had to make the decision to stop feeding her. She couldn't even swallow water.

It was heartbreaking. For nine days, she laid in bed, with no food or drink.

They kept her comfortable (but not really...minimal meds) She was coughing,

choking etc. We asked for more pain meds for her but they kept that at a

minimum. We wanted Hospice, but they would not go along with that. All in all,

we felt that our Mom died a long, slow, painful death. No one ever really told

us if it was Parkinson's Disease or LBD............we did have one dr in the

beginning who diagnosed her with LBD and I do think that was what it was.

>

> A beautiful lady suffered for ten years..........we were devastated when we

lost her.

>

June 14, 2011

I'm sorry I hadn't been able to reach out to you during your time of need -- I

facilitate a local support group in Mass. We do what we can for our loved ones

-- as someone brilliantly said here (Sandy) 'we are not responsible for the

outcome, only the effort'

I'm sorry to hear about the Hospice situation - that is frustrating...

>

> My Mom passed away on Oct 7, 2010. For the last three years of her life, she

was in a health care center here in Massachusetts. She was a wonderful Mom,

giving, caring, unselfish, always putting our needs before her own.

>

> In October, 1999, we took my Mom to a neurologist. She had been complaining

of dizziness. She thought it was her glasses. The neurologist told us that she

had " mild symptoms " of Parkinsons. She was also experiencing anxiety, so he

told us not to tell her of the Parkinsons at that point in time.

>

> Within two or three years, she began to exhibit further symptoms of

Parkinsons......stiffness, rigidity etc on a mild basis. She would also tell us

that she was having trouble remembering things. At one point, we ended up

telling her that she had Parkinson's. It was so hard for us to tell her, and

she was more concerned for *us*. She told us not to worry that we had told her

and that she was okay.

>

> She was living independently in her own apartment, downstairs from my sister

(a nurse), who was the one responsible for her meds, checking in etc. Over

time, our Mom could not figure out her meds (even though they were all marked by

day for her), she could not operate the remote control for the TV, could not

operate the microwave and didn't answer the doorbell. She couldn't dial the

phone (even with the telephone numbers right there for her.) We took her to

Boston, to Brigham and Women's Movement Clinic. No one ever diagnosed her with

Lewy Body, but we figured it out on our own over time. The dr's in Boston tried

different meds (Seriquol and others) but she would have halucinations, seeing

animals and children. She would be up in the middle of the night, putting some

things in a trash bag and sitting on the couch until someone came in. She would

say that she was going to meet my Dad at the ship.

>

> She fell several times, and a couple of those times were out of her bed during

the night (we bought her a very low mattress).

>

> Finally, we had to make the very sad decision to have her go to a Catholic

nursing center (she was very devoted to her faith). It was a wonderful

facility, but when we left her there the first day, she cried and we felt so

awful and terribly guilty!!! We always told her that we would never put her in

a nursing home.