Re: My mother has won her battle - and all

[Guest guest]

Before I get to 's comments, I'd like to thank everyone for their support

and kind words. Today was a long one. In spite of all of the preplanning,

there were still many decisions to be made.

First, it has been so many years since Mom has been living a normal life that I

gave no thought to undergarments. They are long gone, having been replaced by

either nothing or other items. I had to make purchases this morning before

heading to the funeral home with her clothes. I struggled with the size of

everything. My mother lost 57 pounds in this journey. While that might not

sound like a lot, I doubt she weighed more than 75 pounds when she passed. She

was 5'7 " ...how does one determine a size after that? I cried. The sales clerk

joined me in tears. I did better this afternoon when I had to purchase a shawl

so any pressure bruises on her arms could be covered. Her final dress is a

" kicky " red one with ruffles on the hemline that would move with her steps. I

bought it for her when she was first diagnosed and she loved how she felt in it.

However, the sleeves are short...

I guess someone, somewhere at some time made an error and opened the wrong

burial plot. We had to drive to the cemetery to ensure and witness that the

correct plot had been chosen. Mom's headstone has been in place since 1988 but

that was not adequate. It's okay. It may help me when we actually bury her on

Friday.

I mention these just in case anyone else needs to plan ahead... Oh yeah, the

shoes planned for this time have been swallowed up by some black hole in the

closet. No sign of them anywhere. That was another purchase. Thankfully, her

dress and jewelry remained where they were placed.

Now, , I fully understand what you write. As I mentioned to the woman who

accompanied us to the cemetery, I mourn the loss of my mother. But, I mourn,

also, for the struggle she was forced to endure. Yes, her passing was peaceful

but the decline wasn't always so.

Reading what you write leads me to ask if the physicians treating your mother

are qualified or educated on Lewy Body Dementia? Mom had two neurologists

during the journey. Neither would have given her klonopin or risperadal. She

did take an anti-convulsant briefly when her strong myoclonus were judged to

possibly be more seizure-like. Because it heightened her fatigue, I asked the

doctor to discontinue it with a promise that I would monitor Mom closely

afterward. It was never restarted. So, I would be inclined to question the

medications she is on.

As for the bed sore, my mother fought that for the past year, caused by her

extreme weight loss. Hospice was able to heal it until this last time. While

they could not heal it, they did treat it to prevent infection until Mom passed.

When Mom's total inability to swallow began, we knew the end was near. Only at

that time was a minimal amount of morphine given as needed. In the first days,

it was only given with the dressing change to alleviate possible pain. Later,

morphine was increased as dehydration caused other discomforts. Mom remained

comfortable and at peace for the 10-day journey to the end.

Your description of your mother's movements remind me of when Mom was

hospitalized in 2007. Her regular neurologists did not practice at that

hospital so a staff neurologist treated her. I did not know then what I know

now or I would have made some immediate changes! Mom's medications were

discontinued with no titration downward. Everything gone in one swoop. Mom

went into a real tailspin. I thought she was dying. For the week she was

hospitalized, she did not sleep. She screamed. She cried. She was put in

restraints which bruised her arm from her elbow to her hand. She rubbed the

skin on her heels to the point of redness. It would have been worse had the

nurses not been so attentive. The doctor tried Haldol. Then Ativan. Finally,

Mom was put back on the Seroquel that had been discontinued abruptly. Never

again will I trust that every doctor knows what they are doing! After Mom's

discharge from the hospital and the return to her normal neurologists, she

regained normalcy. Sadly, she also lost the ability to walk and I'll never know

if the Haldol or Ativan contributed to that loss.

I found this group after that and became educated, reading everything in the

files and every message posted. There is a tremendous amount of knowledge that

is based on experiences that are real and not written on theory. I firmly

believe that the knowledge acquired helped Mom's remaining journey be much

smoother. I knew what questions to ask and what to reject in the form of

suggestions. If I didn't know, I asked the doctor to wait while I consulted the

group. Having that knowledge empowered me to be a better advocate.

As Mom's journey ended, I was overwhelmed by the support of those who had cared

for her. Most commented that I impressed them with my ability to manage Mom's

care. That ultimately gave them support they needed to do a difficult job. I

am not a superhero. I am just a daughter who needed to expect/demand proper

care of a loved one. I credit this group and its generous sharing of knowledge

with empowering me to be a better person. Thank you to all who shared in that

process...

I believe I asked in an earlier message if you had Hospice for your mother. If

not, please do ask for their involvement now. They may be able to evaluate meds

and make changes that will bring peace to your mother. It sounds like those

attending her are not understanding the issues. Each patient is different and

no one plan of action can possibly encompass all challenges. Hospice can also

provide you with support that can only help you move forward as an advocate.

All of that will help when options become more limited.

I apologize for the length of this posting. , please take the steps now

that will empower you and help your mother. Reach out to this group for

positive learning and direction. Take their advice. You will only be so much

better for it, as will your mother. The first step is Hospice. Another step

may be finding new doctors to take over primary care. The " what do you expect "

attitude would confirm that thought. You may then be able to step out of the

darkness you feel and get to the point of finding some bright spot in every day.

Best wishes,

Lynn in Florida

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

>

> God bless you Lynn for your kindness, generous soul and inspirational words

during the darkest hours of all our lives.

> I know that the soul releasing from a body that can no longer support a full

life is a blessing. I went today to visit my Mom, and she now is back in a

psychiatric hospital in which they put her on risperadal, klonopin, and an

anti-convulsant, all in an attempt to keep her calm, in lieu of opiates. She is

in pain from I believe, a bed sore, and otherwise just writhes in her sheets,

twisted, with her eyes full of pain and fear. I know, she would not want to

sustain here on earth having people look at her as a burden or a sick woman who

is never going to be whole again. I totally understand that passing is the next

leg of this journey, and when she is ready to release, she will and so will I.

> I am starting to feel numb now, and look at her differently, as I see her

often and have lived and breathed her disease these last couple of years. Her

doctor today told me, she is in the advanced stage and will only decline until

she continues to break down to death. What do you expect? I just looked at him

like, 'she is my Mother, I guess, I expect a miracle, as she was a force to be

reckoned with on Earth.' She leaves such an empty space in my heart, as, I only

trusted her in my life, and now I feel so lost because the inevitable is real.

There is no one else that I really care about with the equal amount of love that

I had for her. To begin again, is something that I know is my next job, I am

just tired, and have nothing more to give. I don't think that I can ever replace

a Mother's love, nor do I want to. I am scared, and I am resistant, yet, I must

face it. I thank you all for your stories and sharing.

> Lynn, I continue to pray for you that you take care of yourself and that there

is someone there to help you along the ride.

> With Love,

>

> , Long Island, NY

[Guest guest]

Dear Kate,

Thank you for sharing your experiences....  I've learned quite a lot from them.

Wishing you good memories and good times ahead.

Hugs from NY,

Helene

 

" Maturity is the capacity to endure uncertainty. "

                                        \

               - Finley

" When you feel like giving up, remember why you held on for so long in the first

place. "    - Unknown

>________________________________

>

>To: LBDcaregivers

>Sent: Wednesday, March 7, 2012 1:44 PM

>Subject: Re: Re: My mother has won her battle - and all

>

>Lynn

>

>I also lost my mom this month, too, and I agree that the aftermath is

>nasty, no matter how much planning has been done.  It's incredible that the

>wrong plot was opened.  That's just one thing too much.  I keep telling

>myself that one day we will look back and smile about the " unusual " things

>that happened.

>

>Mom had expressed her desire for cremation long before her passing so we

>had no reviewal.  Cremation doesn't mean you skip this part, but to have

>one, you have to agree to (and pay for) embalming and Mom would have hated

>that.  As no one would see her, I didn't really need to worry about

>clothes.  We put her in something she often wore.  Family was allowed at

>the cremation and we were each given a private last moment with her.  It

>was really very lovely.

>

>There are so many impersonal things that take place after the passing,

>aren't there?  Within a week, the wonderful nursing home started being less

>than kind about the few hundred dollars we still owed.  Mom was on

>Medicaid, no estate of any value, so I suppose they were worried.  My

>sister remarked that they seem to have done this many times before.  I

>agree.  It takes weeks for all of the financial picture to come together,

>especially with Medicaid.  The county has given me plenty of time for this,

>but not the nursing home.

>

>Forty years ago, at my dad's passing, Mom had an even worse experience.

>Back then, bank accounts were frozen at someone's death.  Even joint

>accounts.  Mom had no access to any of her accounts, which were joint with

>Dad.  She had no cash and was left with a mortgage to pay, two kids at home

>to feed and utility bills to pay.  If not for our neighbors, she might not

>have gotten through it.  So she made me promise to close all of her

>accounts (joint with me) immediately after she passed, which I did.  Big

>mistake!

>

>Here's what I learned:

>

>

>  - Do not close bank accounts until all bills are paid, probate is

>  complete (if there is something to probate) and any money owed to her

>  (estate) has been received.  This also helps with keeping records of where

>  her money has gone.

>  - Get many copies of the death certificate.  Every time you get a check

>  that is made out to the estate of, there will be forms to fill out and

>  notarize and a certified death certificate to accompany that form.  And,

at

>  least in Minnesota, you have to hold onto the checks for 30 days before you

>  can even turn the form in.  It would have been a lot simpler if I had kept

>  her bank account open.

>  - In Minnesota, you only have to go through Probate if there are assets

>  of over $50,000.  For anything less, you can do an informal probate. 

And,

>  if it is just a matter of things like insurance refunds, even informal

>  probate isn't necessary - just the notarized form and the death

>  certificate.

>  - You have to notify EVERYONE.  The county generally has the

>  information, but it is wise to confirm that they know if something like

>  Medicaid is involved.  If VA benefits are involved, you have to be sure to

>  inform them AND be aware that they may require that you return the last

>  benefit check or amount.  Credit cards need to be closed (if you haven't

>  already).  I'm sure there are others I haven't encountered yet.

>  - Have a prepaid funeral account for at least $10,000.  Between the

>  service, cremation or burial or both, funeral director, church and other

>  costs (lunch, musicians, pastors, printing) this is a minimum.  If, as the

>  passing is approaching, you are concerned that you don't have enough in the

>  account, add to it right away.

>  - Be sure you understand all the rules of the cemetery.  They have all

>  sorts of rules about what the marker can look like, how large it can be,

>  how it should be set, etc.  And, even if they have a rule, if you need

>  something that is outside of their regulations, ask for it.  You may need

>  to go through a process, but you are often successful.

>  - And a suggestion.  If you have a number of siblings, let each take

>  responsibility (and power) over parts of the funeral.  And accept how they

>  decide to handle it.  It's important to their grieving process and your

>  sanity.

>

>

>And, when mistakes or other bad things happen, try to take them in stride.

>Taking things too much to heart and getting upset by them doesn't help

>anyone and leads to ulcers.  The mistakes or downright awful things that

>happen are someday going to be the things you remember - maybe even fondly

>or with humor - years from now.

>

>Oh, and even if it is modest, you are entitled to an executor's fee.

>Originally, I thought I should be doing all of this out of love.  Nope.

>The love angle hasn't changed, but the days away from work (beyond

>bereavement pay), the gas, the other things I can't take care of because of

>what I need to handle for this " estate, " call for some kind of

>compensation.  Not only will I take a small executor's fee before turning

>the reconciliation over to Medicaid, but as I revise my will this year, I

>will be sure that something is set aside for the person who has to handle

>all this nasty business.

>

>It kind of makes you wonder if there is time to grieve amongst all that is

>required of you.  But " I BELIEVE! " things will eventually get better.

>

>Hang in there.

>

>Kate

>

>

>

>

>

>> **

>>

>>

>> Before I get to 's comments, I'd like to thank everyone for their

>> support and kind words. Today was a long one. In spite of all of the

>> preplanning, there were still many decisions to be made.

>>

>> First, it has been so many years since Mom has been living a normal life

>> that I gave no thought to undergarments. They are long gone, having been

>> replaced by either nothing or other items. I had to make purchases this

>> morning before heading to the funeral home with her clothes. I struggled

>> with the size of everything. My mother lost 57 pounds in this journey.

>> While that might not sound like a lot, I doubt she weighed more than 75

>> pounds when she passed. She was 5'7 " ...how does one determine a size after

>> that? I cried. The sales clerk joined me in tears. I did better this

>> afternoon when I had to purchase a shawl so any pressure bruises on her

>> arms could be covered. Her final dress is a " kicky " red one with ruffles on

>> the hemline that would move with her steps. I bought it for her when she

>> was first diagnosed and she loved how she felt in it. However, the sleeves

>> are short...

>>

>> I guess someone, somewhere at some time made an error and opened the wrong

>> burial plot. We had to drive to the cemetery to ensure and witness that the

>> correct plot had been chosen. Mom's headstone has been in place since 1988

>> but that was not adequate. It's okay. It may help me when we actually bury

>> her on Friday.

>>

>> I mention these just in case anyone else needs to plan ahead... Oh yeah,

>> the shoes planned for this time have been swallowed up by some black hole

>> in the closet. No sign of them anywhere. That was another purchase.

>> Thankfully, her dress and jewelry remained where they were placed.

>>

>> Now, , I fully understand what you write. As I mentioned to the woman

>> who accompanied us to the cemetery, I mourn the loss of my mother. But, I

>> mourn, also, for the struggle she was forced to endure. Yes, her passing

>> was peaceful but the decline wasn't always so.

>>

>> Reading what you write leads me to ask if the physicians treating your

>> mother are qualified or educated on Lewy Body Dementia? Mom had two

>> neurologists during the journey. Neither would have given her klonopin or

>> risperadal. She did take an anti-convulsant briefly when her strong

>> myoclonus were judged to possibly be more seizure-like. Because it

>> heightened her fatigue, I asked the doctor to discontinue it with a promise

>> that I would monitor Mom closely afterward. It was never restarted. So, I

>> would be inclined to question the medications she is on.

>>

>> As for the bed sore, my mother fought that for the past year, caused by

>> her extreme weight loss. Hospice was able to heal it until this last time.

>> While they could not heal it, they did treat it to prevent infection until

>> Mom passed. When Mom's total inability to swallow began, we knew the end

>> was near. Only at that time was a minimal amount of morphine given as

>> needed. In the first days, it was only given with the dressing change to

>> alleviate possible pain. Later, morphine was increased as dehydration

>> caused other discomforts. Mom remained comfortable and at peace for the

>> 10-day journey to the end.

>>

>> Your description of your mother's movements remind me of when Mom was

>> hospitalized in 2007. Her regular neurologists did not practice at that

>> hospital so a staff neurologist treated her. I did not know then what I

>> know now or I would have made some immediate changes! Mom's medications

>> were discontinued with no titration downward. Everything gone in one swoop.

>> Mom went into a real tailspin. I thought she was dying. For the week she

>> was hospitalized, she did not sleep. She screamed. She cried. She was put

>> in restraints which bruised her arm from her elbow to her hand. She rubbed

>> the skin on her heels to the point of redness. It would have been worse had

>> the nurses not been so attentive. The doctor tried Haldol. Then Ativan.

>> Finally, Mom was put back on the Seroquel that had been discontinued

>> abruptly. Never again will I trust that every doctor knows what they are

>> doing! After Mom's discharge from the hospital and the return to her normal

>> neurologists, she regained normalcy. Sadly, she also lost the ability to

>> walk and I'll never know if the Haldol or Ativan contributed to that loss.

>>

>> I found this group after that and became educated, reading everything in

>> the files and every message posted. There is a tremendous amount of

>> knowledge that is based on experiences that are real and not written on

>> theory. I firmly believe that the knowledge acquired helped Mom's remaining

>> journey be much smoother. I knew what questions to ask and what to reject

>> in the form of suggestions. If I didn't know, I asked the doctor to wait

>> while I consulted the group. Having that knowledge empowered me to be a

>> better advocate.

>>

>> As Mom's journey ended, I was overwhelmed by the support of those who had

>> cared for her. Most commented that I impressed them with my ability to

>> manage Mom's care. That ultimately gave them support they needed to do a

>> difficult job. I am not a superhero. I am just a daughter who needed to

>> expect/demand proper care of a loved one. I credit this group and its

>> generous sharing of knowledge with empowering me to be a better person.

>> Thank you to all who shared in that process...

>>

>> I believe I asked in an earlier message if you had Hospice for your

>> mother. If not, please do ask for their involvement now. They may be able

>> to evaluate meds and make changes that will bring peace to your mother. It

>> sounds like those attending her are not understanding the issues. Each

>> patient is different and no one plan of action can possibly encompass all

>> challenges. Hospice can also provide you with support that can only help

>> you move forward as an advocate. All of that will help when options become

>> more limited.

>>

>> I apologize for the length of this posting. , please take the steps

>> now that will empower you and help your mother. Reach out to this group for

>> positive learning and direction. Take their advice. You will only be so

>> much better for it, as will your mother. The first step is Hospice. Another

>> step may be finding new doctors to take over primary care. The " what do you

>> expect " attitude would confirm that thought. You may then be able to step

>> out of the darkness you feel and get to the point of finding some bright

>> spot in every day.

>>

>> Best wishes,

>> Lynn in Florida

>> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>>

>> >

>> >

>> > God bless you Lynn for your kindness, generous soul and inspirational

>> words during the darkest hours of all our lives.

>> > I know that the soul releasing from a body that can no longer support a

>> full life is a blessing. I went today to visit my Mom, and she now is back

>> in a psychiatric hospital in which they put her on risperadal, klonopin,

>> and an anti-convulsant, all in an attempt to keep her calm, in lieu of

>> opiates. She is in pain from I believe, a bed sore, and otherwise just

>> writhes in her sheets, twisted, with her eyes full of pain and fear. I

>> know, she would not want to sustain here on earth having people look at her

>> as a burden or a sick woman who is never going to be whole again. I totally

>> understand that passing is the next leg of this journey, and when she is

>> ready to release, she will and so will I.

>> > I am starting to feel numb now, and look at her differently, as I see

>> her often and have lived and breathed her disease these last couple of

>> years. Her doctor today told me, she is in the advanced stage and will only

>> decline until she continues to break down to death. What do you expect? I

>> just looked at him like, 'she is my Mother, I guess, I expect a miracle, as

>> she was a force to be reckoned with on Earth.' She leaves such an empty

>> space in my heart, as, I only trusted her in my life, and now I feel so

>> lost because the inevitable is real. There is no one else that I really

>> care about with the equal amount of love that I had for her. To begin

>> again, is something that I know is my next job, I am just tired, and have

>> nothing more to give. I don't think that I can ever replace a Mother's

>> love, nor do I want to. I am scared, and I am resistant, yet, I must face

>> it. I thank you all for your stories and sharing.

>> > Lynn, I continue to pray for you that you take care of yourself and that

>> there is someone there to help you along the ride.

>> > With Love,

>> >

>> > , Long Island, NY

>>

>> 

>>

>

>

>

>--

>Kate Knapp, OIT

>University of Minnesota

>

>

>You were born with certain gifts and talents.

>In kindergarten you were taught to share.

>The world needs all of the gifts it can get.

>Don’t be shy.

>

>

>