Re: Difficult Times

[Guest guest]

,

What you're going through now is very very hard. I hope that having hospice

involved is as helpful to you as it was to me, if only as a way to avoid

taking fragile speechless parent to the emergency room.

I see that other members are going through this last stage of LBD. I can't

> truly imagine at this point how those of you that have already been with

> your loved ones as they pass are coming back to this group, but any insight

> you can offer from your end experiences would be helpful.

>

It's easier following a hard road with the advice of those who followed it

before you. Everyone on this list knows that, all too well.

> The hardest part is that she is nearly impossible to understand, she can't

> complete sentences or come up with words, so all of us are frustrated. ...

> Two days ago though she spoke well enough to declare that she wouldn't take

> any more medication that it was " making her sick " and " I'm in excellent

> health. " She was taking very little, a trace amount of Sinemet, Aricept, a

> medication for negative myoclonus (repetitive, consistent loss of muscular

> control), and an anti-depressant. I am most worried about the effects of the

> anti-depressant being removed as before her illness she was quite

> challenging to get along with and the anti-depressant brought back the

> loving mother we'd once known. The only side effect thus far of the

> medication removal has been a hallucination that people were coming through

> the walls to steal her things.

When my father was at that stage, Seroquel helped calm him. We started with

a quarter of a 25mg pill and gradually increased the dose until we were sure

that he didn't react badly to taking 25mg at a time.

> Hospice tells us that there are no patch medications

> that could treat such symptoms, nor patches that replace or mimic the

> effects of an anti-depressant. Does anyone have any experience with this?

For the last two years or more, Dad got his medications crushed and mixed

with apple sauce or pudding. That meant we couldn't use anything that was

" extended release " and from time to time I had to remind his various doctors

not to prescribe them.

How long can this stage last? Not having any ability to communicate has

> removed the last vestige of quality of Mom's life, but the further she sinks

> the harder she seems to fight to live.

>

> Last week she slapped her caregiver, and she has begun being paranoid about

> the caregivers' intentions. Is there any medication that anyone had success

> with that might permit that to be treated?

Again, Seroquel. Not every LBD patient tolerates or benefits from it, but

it helped my father. The hard thing for me to deal with was the thought

that I was sedating him to make him more manageable. He had never in his

life been manageable.

But just as the anti-depressants brought you back the loving mother you

remembered by correcting chemical imbalances in her brain, Seroquel quiets

unreasonable anger and fear caused by the brain deterioration from LBD. The

delusions and hallucinations are not her, they're the disease and if

Seroquel treats them and makes her happier, be glad.

Best regards,

Ann

[Guest guest]

The Seroquel pills seemed to help my husband's hallucinations and I see now

they are advertised as an anti-depressent. They are one of the

Anti-psychotics we are warned about but for some people they do seem to

help. Nothing else did much for him for any of his symptoms. Chewing gum

helped his panic attacks.

Good luck as you go through this most difficult of times. My husband did

not struggle or suffer when he died in the middle of the night with two of

our children there. He seemed to be holding his own well the day before and

took a sudden dive that night and the end came. It was tough but he was at

last, at peace.

Leona: Caregiver for husband Ray, age 68, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 1 hour from home. Hardest thing I have ever done in my

life. 3/19/09 transferred to Samaritan Keep NH in Watertown, NY closer to

home. He passed peacefully at 5:18 am on April 14, 2009. I am handling it

OK.

'Love is not finding someone to live with; it's finding someone you don't

want to live without.'

[Guest guest]

Dear

You have requested some shared experiences about being with someone when

they die.

I am happy to share my experiences with you, though I am very aware that

this can be so different for every person.

My husband Jim died in February this year after three weeks in hospital.

In the couple of weeks before he was taken to hospital for the last time, he

had suffered many falls, mainly due to his orthostatic hypotension as well

as the rigidity in his walking. A couple of these times I had to call the

ambulance or my neighbours to help pick him up from the floor.

January is a summer month in Australia and keeping him hydrated was becoming

a challenge. Looking back, we experienced an 'oasis moment in the desert'

when, one Friday he seemed stronger and more animated than usual. I was able

to help him down our front steps, get him into the car and drive him to his

favourite Sydney beach of Manly. Here, he transferred to the wheelchair with

little problems so we were able to have an ice cream on the beach front,

then a coffee at the Manly Ferry Wharf on Sydney Harbour before transferring

back to the car and home again. I wondered if this was a sign of better

things to come, but sadly it was just a small moment in time when the sun

shone through before the dark clouds closed in on us. I understand from

others' experiences, that this can be a common situation.

Over the next four days, his condition deteriorated and on the Tuesday

evening, after a hot day in which he seemed to be refusing to eat or drink,

I had to call the ambulance again and their decision this time was to take

him to hospital.

Here his intake of food and drink was absolutely minimal in the first week

and in spite of a saline drip, his condition was not improving. The decision

was made to withdraw all intravenous fluids.

Thankfully we had a single bed room, even though we were in a public

hospital. I was spending all day with him, going home only to sleep. Friends

were coming to the hospital to sit with Jim when I needed a break. I played

quiet, gentle classical music and just kept holding his hand, telling him

how much I loved him, reassuring him .... Jim could not speak any more,

though he did make a couple of attempts to speak but these were only noises

in his throat. However I was able to interpret what he was trying to say

from the context of what I had said to him.

At the end of the second week, during which he did not eat or drink, it

became clear that his body was beginning to shut down and palliative care

was commenced. I then stayed 24/7 at the hospital, 'sleeping' next to him

on hard hospital chairs, and helping the night staff when they came every

two hours to roll him over. This movement caused him to react with a

'startle reflex' so I was able to hold his head and hands to minimise the

trauma from this 'fright' he seemed to be experiencing. Those were long and

difficult nights but I am so glad I was able to be there for him. He was now

receiving morphine four hourly and more when necessary/

During those 8 days of palliative care, I was amazed how his heart kept

beating strongly and his breathing kept going. It was like a steam engine

and it seemed as though it would never end. Then, early on the Saturday

morning, at about 3 am, I became aware that the startle reflex was not

occurring, and the night staff confirmed that Jim had lapsed into a coma. I

stayed with him all day Saturday, but decided that I would go home to get

some much needed sleep, for I had no idea how long this was going to

continue. I had been home just over an hour, when the hospital rang to say

that Jim had died while they were doing the 9 pm roll-over.

Thankfully a girlfriend, who nurses in an Intensive Care Unit, had warned me

that often, when the family are continually with a patient, death will occur

when the family member leaves for a brief moment, such as going to the

toilet. So although I was very sad that I had not been there at the very

last, I felt certain that I could trust in God's perfect timing.

I had already given written instructions (on bright yellow paper in the

front of his clinical notes) that I wanted to be able to assist with the

final preparation of his body. Our son and his partner Valeria came

with me to be part of this final farewell.

I had also donated Jim's brain to the NeuroScience Australia brain donation

program, so there was a process that had to be followed to ensure that the

brain reached the brain bank as quickly as possible.

, I am so sorry that your mother may also be reaching the end of

her journey. I would encourage you to use this precious time to tell her how

much you love her, express your forgiveness for any outstanding 'debts'

and/or ask for her forgiveness ... to feel that the 'slate is clean' is a

precious feeling when death finally comes.

I hope my experience will give you some insight into what it may be like for

you.

Thinking of you with love as you walk this final journey with her,

Elaine

Elaine (61) from Sydney Australia

Carer for four years for husband Jim (82) who died peacefully in hospital on

12th February 2011.

Brain analysis, as a result of brain donation, has now confirmed the

diagnosis of LBD

<http://groups.yahoo.com/group/LBDcaregivers/message/98922;_ylc=X3oDMTJyZjNv

cjg5BF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzk4

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Posted by: " broadreach253 "

<mailto:broadreach253@...?Subject=%20Re%3A%20Difficult%20Times>

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broadreach253

Tue Sep 20, 2011 2:07 am (PDT)

I see that other members are going through this last stage of LBD. I can't

truly imagine at this point how those of you that have already been with

your loved ones as they pass are coming back to this group, but any insight

you can offer from your end experiences would be helpful. I have never been

with anyone who has passed away before, although I heard beautiful stories

about my 97 year old grandmothers last days (she passed on her birthday,

surrounded by family). My grandmother suffered from paranoia and

hallucinations in her last weeks, but other wise was healthy until a week

before her passing when she essentially told her daughter she was going to

come to her house to die, and did just that. This is certainly nowhere near

what is going on with my mother.

We moved my mother into our home two years ago when her assisted living

arrangement couldn't take her any longer, yet she seemed too capable for a

nursing home and the dementia units we saw were only going to make her

dementia worse. The first year wasn't too bad, she dropped in her mobility

from being able to walk almost fine with the walker to only managing a few

feet at a time. She has now been confined to a wheelchair since early July.

About six weeks ago we thought she was passing and hospice came in with a

prognosis of " no more than three weeks. " At that point she was only eating a

few bites every other day or so, and having lots of unresponsive periods.

Then she stablized a bit, with eating a few bites nearly every day, and over

the past week she sort of " woke up " and has been asking for food again,

although still only eating a little bit or drinking Ensure to replace meals.

However, I think it is enough to keep her going.

The hardest part is that she is nearly impossible to understand, she can't

complete sentences or come up with words, so all of us are frustrated. Most

days she can sit up in the wheelchair relatively well now, which wasn't

happening six weeks ago. Two days ago though she spoke well enough to

declare that she wouldn't take any more medication that it was " making her

sick " and " I'm in excellent health. " She was taking very little, a trace

amount of Sinemet, Aricept, a medication for negative myoclonus (repetitive,

consistent loss of muscular control), and an anti-depressant. I am most

worried about the effects of the anti-depressant being removed as before her

illness she was quite challenging to get along with and the anti-depressant

brought back the loving mother we'd once known. The only side effect thus

far of the medication removal has been a hallucination that people were

coming through the walls to steal her things. Hospice tells us that there

are no patch medications that could treat such symptoms, nor patches that

replace or mimic the effects of an anti-depressant. Does anyone have any

experience with this? How long can this stage last? Not having any ability

to communicate has removed the last vestige of quality of Mom's life, but

the further she sinks the harder she seems to fight to live.

Last week she slapped her caregiver, and she has begun being paranoid about

the caregivers' intentions. Is there any medication that anyone had success

with that might permit that to be treated? Thanks for any advice.