Re: Donna new member - sorry for length

Posted June 19, 2008 · June 19, 2008

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Hi Donna,

Welcome, Im sorry to hear about your mother, but very glad you

have found us.As you can see from the responses already from Lin,

June and Janet and company we are with some of the most caring

people.And the knowledge we can gain here is limitless as well as

the tremendous support.I have a few similarities in my situation

with mom as to your situation.Mom was dxed a long time ago with

parkinsonsons and re dxed about a year and a half ago with lbd.I

thought it was a misdiagnosis of parkinsons, but as Janet said there

is pdd which is a form of lbd.All of this was so confusing to me at

first but with the help of this group I toulk over moms care and got

her with the drs that I trust and basically from this group I

learned the meds that work best for mom and at least have her living

a little better than when first dxed.One thing I would say is if

your mom isnt on a cholinesterase inhibitor, you should look into

that asap.My mom is on aricept.There are others too.This is the

first best step to take.Heartfelt best to you and your mother, and

once again welcome Ron

In LBDcaregivers , Donna Horbal

wrote:

>

> Hello all! Thanks for having me. I was so relieved and excited

to find this group. As you all know, this disease can make you feel

awfully alone when dealing with it. I am my mother's POA and

caregiver. She is 77 years old and was diagnosed with Parkinson's

Disease twelve years ago, soon after my father's death. Since then,

she moved back to Virginia to be near me and was able to live alone

until 18 mos. ago. At that point, her hallucinations and delusions

(which began soon after her diagnosis) became too involved and

frequent. She became too confused and behaviorally involved to

remain in her retirement condominium and moved into an assisted

living facility.

>

> After living in the assisted living facility about six

months, they required her to pay for around the clock care, in

addition to the rent for assisted living. Her behaviors became

hard for them to handle and her personal care went downhill. The

cost for her care became astronomical and the constant change of

personnel took a toll on her. At that point, I found a lovely

assisted living group home, with four senior ladies and a live-in

CNA. The company has eight of these homes and soon will have twelve

homes. The owners are delightful and have worked miracles with many

seniors in need, however, my mother's condition and behaviors have

been a real challenge.

>

> In April, she was sent to the Medical College of Virginia's

geriatric psychiatric ward for ten days. This happened as a result

of a trip to the emergency room that the facility felt was

warranted. She was attacking other residents, breaking lamps

and banging her head against the glass door. No one there was able

to settle her, so she was transported to the hospital. While on the

ward, she was restrained twice and was also assigned around the

clock care.

>

> I am truly concerned that her current facility will

eventually give me a thirty day notice for an alternate placement,

so I'm currently researching our area for a facility that is

experienced in care for the LBD patient.. I've tried so hard to

keep her out of a nursing home. She is unable to live with me

because my husband and I both work and I have a two-story house,

with no bedroom on the first floor. In addition, she would require

around the clock care in any home.

>

> While Mom was in MCV, she was finally given the diagnosis of

LBD and it was even suggested by one of the physicians that she may

have never had PD. After twelve years of PD, my mom is still

ambulatory and has rather remarkable limb strength. The physician

explained the initial Parkinsonism symptoms of LBD. You could have

knocked me over with a feather. For twelve years, I have been

dragging my mother all over the state to Parkinson's clinics,

specialists, neurologists, therapists, etc. and not one has

mentioned the LBD. I'm still trying to digest the information given

me.

>

> I have traveled the last twelve years alone (except for my

husband and grown children) in taking care of my mother. I have

been her taxi driver, shopper, " parent, " accountant, daughter and

organizer. Somewhere in each day, I had to fit in my job as wife,

mother, pet owner, special education teacher, housekeeper, cook,

etc. There has never been a moment when I would have been surprised

if the phone would have rung with a drama, emergency or delusional

reprimand from my mother or her facility. In March, at 52 years of

age, I realized I needed to share the responsibility and start

taking care of myself. I began to insist that my brother help a

bit, although he deals poorly with her condition. I also moved her

into her current living situation, that instead of being five

minutes from me, as it had been for the last twelve years, is

instead forty minutes from me.

>

> I am inspired by your experiences and am sure you have much

to teach me. I look forward to learning and sharing. My mother's

medication changes so much, that I'm not certain any more of her

regimen and doses. As of last week she was on carbidopa/levodopa,

Seroquel, depakote, namenda (?), antibiotic for a UTI, zyprexa (as

needed for aggression/agitation) and one other (new). I hope to

learn about meds from your experiences and become a better advocate

for my mother. But most of all, I look to seek/offer comfort

from/for others who care for and love a LBD patient. My mother has

taught me much, both before and after this disease, whether it be

PD, LBD or both. I want nothing more than to do what is best for

her. Thanks in advance, for helping me do so.

>

> Donna Horbal

> Richmond, Virginia

>

Posted June 19, 2008 · June 19, 2008

Thanks to everyone for your welcoming responses and wonderful information.

After hearing from you, I feel like we're on the right track. She has now begun

the aricept/namenda meds, in addition to the carbidopa/levodopa, depakote and if

needed, Zyprexa. However, now I question the Zyprexa. It certainly calms her

moods (usually), but she quickly becomes our little zombie. We learned about

the Ativan the hard way. Needless to say that was discontinued after she

destroyed her apartment at her last assisted living facility. It took several

nights of that behavior before the facilities docs put two and two together.

That was prior to the LBD diagnosis...who was I to question the med. In my

numbness, upon the new LBD diagnosis, I didn't question the depakote. That was

added in the hospital and was continued and increased to 500 mg., upon her

discharge. As a teacher of emotionally disturbed adolescents, I know that

anti-seizure

medication well. So I certainly intend to call and question that medication.

I'm sure you folks have a good idea as to why it was prescribed. Thanks again

to everyone who responded. As you have challenged me to do, I will keep on

reading, learning and of course, loving my little ornery and spunky little

Momma to pieces.

Donna H.