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 They are long gone, having been replaced by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

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>

>

> 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