Re: Mom

February 3, 2011

Hello and welcome:)

My mother also has her long term memory and is still witty, she

laughs a lot, even every so often since she broke her arm in the

nursing home and is in pain still after 2 months. Her hallucinations

started seeing kids in her bed and others in her bedroom, or

seeing a snake one time, or thinking my granddaughter was in

bed with her trying to cover her up all night, all this started as

I look back now about 5 years ago. My granddaughter is 6 now.

My Mom was 82 then when all this seemed to be very unusual for

me and my sister whom my Mom lived with both of us at the time

taking turns going to her house and my house, we lived 1 hour

away in Dallas area. My Mom had Open Heart Surgery when she

was like 81, quad bypass, carotid artery, etc. But during these

past 5 yrs. her having these " dreams " , she would wake up and

be normal and not have any of these dreams going on in the daytime,

until my about 6 months prior to my sister passing away which was

my sister passed away, Nov. 09, last year. My Mom was around 85

I would say when her hallucinations got carried away very bad, which

was in the daytime and all the time. She fell and broke her foot

last year and went downhill after that, finally she started walking

out of the house, people were calling her to go, she did this 4 times,

and scared me to death, then she fell a few more times, and I finally

had to take her to the ER, she ended up in the psch hosp. for a week,

then to a nursing home 9 months ago where she lives. She did very

well when they got her medicines going, but still hallucinates daily.

But didn't ever try to leave the home. Then when she fell and

broke her arm 2 months ago, she's gone completely out of it for

the most part because of the severe pain and the pain medicine.

I see her daily at the nursing home and worry about her every day.

In my opinion I do not think nursing homes or this one or the last one

she was in took care of her properly like I would.

You and your brothers are great wanting to take care of your Mom.

I pray she will not get to the point it gets too much. But with all

of you boys you will each get a break. Hope it won't be she has to

do a lot of moving around or changes as LBD patients do not like

change easy at all.

I live in Plano my brother lived in Tucson before he passed away

20 yrs. ago waiting on his 2nd heart transplant, so I'm the only

child left to take care of my dear mother, I'm 58. How old is your

Mom if I may ask? May God be with you and your mother and your

family, and how did you get diagnosed with LBD? Is it heredity did

your doctor tell you? What symptoms do you have and how old are

you if I may ask? I pray I never get this horrible disease. I have

enough health issues as it is. Lupus, and other things.

God God Blessings!

in Texas

In a message dated 2/2/2011 10:45:56 P.M. Central Standard Time,

semperfimac2003@... writes:

February 4, 2011

Dorothy -

You are a gem. You have not only given Tony and his brothers some much needed

guidance, but you have described perfectly some things the rest of us have

either learned along the way or need to learn. I am making a copy of your

response to share with my brother and my mom's caregivers in the Nursing Home

where she lives. I happen to be one of her caregivers there also, as I have

recently become CNA/CMA certified. I like to share with the others as much as I

can. Thank you for taking the time to compose these thoughtful and wise words.

Your mother-in-law is truly blessed.

I wish you many days of laughter and new pleasant memories,

Katy

February 5, 2011

Dorothy, what a fabulous letter! I have made a copy for my children.

I have tow children moving in with me by the 12th of this month, and I am

looking forward to it.

Right now I have no signs of mental problems but they will come as I age

more.

So I am thankful for fine letters like yours to have on hand for them to

read when they need information on how to care for me. You gave the most

insightful suggestions I've seen in a spell.

Love a lot,

Imogene

In a message dated 2/3/2011 5:37:09 P.M. Central Standard Time,

fullcircle@... writes:

Hi Tony,

I have written a rather long reply and I hope you find it helpful, even if

a

little. We are caring for my mother in law in our home in northern

California. In trying to form a reply to you I just kept thinking of more

that might be helpful and it would have been helpful to me at the start of

this effort of caring for my mil here. It seems now like I've been doing

this a long time and I'm surprised at how much I've learned already.

My mil has declined quite a lot in the last year but still able to walk

with

great effort and help and still present somewhat though she does not like

being left alone and does have some hallucinations and " strange dreams " .

I've found handling these things is best done with love and humor where

needed. If your mother is not upset by these things just talk calmly - how

nice it is go be together like that, does she remember that time that..

and

so on. I'd not recommend arguing with her or trying to show her that she's

wrong (and losing her mind). Now sometimes my mil will wake in the

middle

of the night thinking she has to get up to get ready for work or get her

kids ready for school. If she's a little agitated I'll calmly let her know

that her kids have already gotten to school and then start asking her about

how she likes their school and so on. If she's just confused I ask her

questions like: Oh, what school do your kids go to? Do they like their

teacher? Do they take the bus or walk? What town is that in? Eventually

she calms or realizes there's some problem with the continuity of these

thoughts and tells me she doesn't know why she's thinking these things and

I

then reassure her she was just dreaming, it's normal to dream, and so on.

It works for us and I think that is key - gently, kindly, calmly talk about

these things and eventually it will come back around to where she is at the

moment. When there are " children in the bed that need help " I talk with

her about them and then talk to the children in the bed and tell them not

to

be afraid, everything is ok, they are safe and we love them, etc.

Sometimes

I ask them if they need anything to eat or a drink of water or if they need

to use the potty. Sometimes my mil is relieved and tells me they are ok

now and sometimes she tells me, " isn't it funny that I think those things? "

To the latter I just remark about how strong and real dreams seem like

sometimes. I am trying to avoid her going to the place of her saying she's

losing her marbles if I can because it just depresses and upsets her, which

she doesn't need at all. I don't ever use the " dementia " word though

others

do, especially home care folks and doctors.

When she asks me what's the matter, why are her fingers crooked up or why

she thought there were children in her bed etc. I tell her it's the

Parkinson's. She says " Oh, Parkinson's can do this? I tell her yes it

sure

can and let her know how well she's doing despite the Parkinson's, how

strong she is and how all the hard work she does is really helping a lot.

Her diagnosis is Lewy Body Dementia with Parkinson's or Parkinson's

Dementia

so I am not lying. It's easier for her to deal with the word

" Parkinson's "

than the word " Dementia " . She is 93 years old now and has had this awhile

and probably had undiagnosed Parkinson's for a long time. J Fox

has

Parkinson's and she likes him so it's less scary for her with that

association.

My mil is very childlike in many ways and we use parenting skills

extensively day to day including some rare timeouts (I call them " breaks " ),

naps, snacks, singing, gardening, playing with the dog (she throws the ball

with a pick up stick) and a lot of activities. Day programs and regular

activities outside the home are great as well. She's gone to a ceramics

class for several years now and still going as her health permits.

Involve

your mother with as much as you can and understand they are often like kids

on the first day of school - not wanting to go but return home happy with

stories to share about their day. Also let her have her space - a nice

tv,

vcr/dvd and music and comfortable chair in her room where she can retreat

and watch a favorite show or movie or listen to favorite music, alone or

with company is a great help. Many suggest that only those providing

caregiving go into her room without invitation which helps make the space

truly her own. If there are children, especially small children, they can

sometimes naturally be very loud and shrill and this can be stressful her.

They should only go in her room on her invitation for a visit. My mil has

a tiny room but we have managed this. We have a very small padded armchair

(lucky she is petite) she can sit and relax in We will sometimes watch

a

movie with her or Skype with cousins, etc. in her room - and she feels like

a hostess having us over to her " home " , which is a boost for her. We

have

a lot of communication with family over the internet - Skype and email and

take a lot of pictures to share. I take pictures of outings and special

dinners and put them up so she can remember them as well. I involve her in

every aspect of I can of home live and give her " jobs " including folding

laundry, help planting vegetable and flower seeds (she holds the packet),

throwing the ball for the dog, help with dish washing, peeling vegetables,

etc. For dishwashing I have her rinse (we don't have a dishwasher) and

hand her light items that she can hold under the warm water to rinse off

the

soap then I give a quick final rinse and put on the rack. I ask for her

input in meal planning and make sure to have favorite foods. The more I

can involve her with these things the more productive she feels which goes

a

very long way from her feeling like a burden - very important when living

with family.

Sometimes she isn't sure where she is - It LOOKS like her room but she's

not

sure it is. I pull pictures from the walls one at a time and we talk about

the people in them, etc. I show her ceramics she's made and talk about

those. She'll recognize them and feel vaguely familiar but still not

certain. Eventually she does accept she is in her real room. Sometimes

I'll get her up to the bathroom or kitchen for a break (potty break or some

pudding) then back to her room and talk about how nice her room is with all

her things there and the issue is dissolved. I think this is a variation

of

Capgras syndrome.

You will need a lot of patience, compassion, love and humor to get through

this. Brainstorming and creativity help too! She will need a lot of love

and acceptance and encouragement and parenting skills will be a must

because

they do become very much like 2-3 year olds at times. Even though she

might seem out of it don't ever talk like she doesn't understand because

most of the time she will. Even sleeping she might overhear conversations

so keep that in mind, ie don't say something you wouldn't want her to hear

thinking she won't understand or hear. Have those conversations in

another

room.

I don't know what kind of arrangements you have planned, but I would

strongly recommend having a living situation that she has her own room with

her familiar things decorating it and have the flexibility to put pictures

on the walls and a lot of cheerful stuff. Having a space that she enjoys,

that is hers and reflects her life and likes is important to her mental and

emotional well being. Make it as personal as you can so she identifies

with it and likes to be there. My mil was an elementary school teacher -

their classrooms are decorated with student's work and all sorts of other

things and over the years she enjoyed that - always decorated her home for

various holidays. In her senior apartment where she lived before moving in

with us, she always decorated her front door for valentine's day, st pat's,

easter, etc. We are keeping this tradition - the door to her room has her

name on it, a little decoration for the time of year, a welcome sign. A

pretty calendar at eye level where she passes frequently helps her keep

track of days/months too. We hung a small curio shelf where some of her

favorite ceramic pieces that she made right inside the doorway as well

where

she sees and points out sometimes, " I made that funny thing. " . Her

hospital

bed is currently alongside one wall and on that wall are photos - some in

frames and some not - of family, friends, pets, favorite animals etc.

tacked on the wall. There's a origami crane mobile hanging from the

ceiling

that her daughter made for her. Stuffed animals she's received over the

years in a toy hammock peering over the edge, smiling flowers, her favorite

things as much as possible. We have a small dresser and armoire with 2

drawers for clothes and personal items and a large linen cupboard with

drawers for supplies and bed linens. When you plan her space, plan for

not just bed linens storage but also for bed pads, extra pillows, depends,

poise pads, diapers, a lot of washcloths and some towels for peri care and

sponge baths, baby wipes, extra light blankets, soft heating pad etc. A

nightstand for a lamp and bedside needs, space for items like a basin

(comes

in handy for many things), bedpan, bedside commode, nebulizer and supplies,

medicines, medipac, wheelchair, walker, cane, exercise/pt items. Personal

items should include her photos in albums that can be looked at often and

reminisced about. It is really best not to move her. If you were

thinking she would reside in turn with each brother I'd really suggest

rethinking this and see if there's a better solution that will keep her in

one place. A lot of problems will be avoided if she can is not moved

about

because moving is very stressful and stress often brings about changes and

issues with health and mental/emotional well being. You should be sure

to

ask her neurologist about moving and activities too.

The larger her bedroom the better - eventually you will need a hospital

bed

and the space to move it about to make it up and, as she becomes unable to

get up much you'll need access to both sides and from the head of the bed

so

she can be changed and repositioned without back injury to caregivers.

Eventually you might want enough space that another twin bed or sofa can be

fit in there because often they do get afraid, etc., and having someone

sleep there with her will help. This is something I was not able to

provide unfortunately and sure wish I could at this point. If you can

provide her own bathroom that would be great. A typical bathroom is a

large one with tub and shower. Have grab bars professional installed

(avoid suction cup devices they are not safe or reliable). A shower bench

and a hand held shower with a shut off valve on it will be helpful for her

in bathing. A commode over the toilet will help her get up and down from

the toilet safely. Planning for her space and needs for safety and

comfort is important and an Occupational Therapist (ask her doctor to help

access one) would be very helpful to you in doing this. There will be

things that can be done now and some advanced planning for what will be

needed in the future, including wheelchair access around and in and out of

the home. Door hinges might need to be changed and a ramp might be needed

and an OT will be very helpful. If she is mobile you will want to address

safety for kitchen and exit doors especially. If she is not to get up

without someone to be there to prevent falls don't rely on her word that

she

will not get up but invest in an alarm like nursing homes use for fall

risks. They can be moved about with her from chair to toilet, etc. and are

so very helpful if one has run to answer the front door or phone or use

the

bathroom.

I'd recommend pursuing aggressive physical therapy (with the blessing of

her

doctor of course) and keep it up as long as possible - that means doing

exercises daily in the home and walks and outings as well. The more indoor

space to walk about the better if the weather is too cold or too hot for

her

to be outside. Exercise will not only help her body and that mind-body

connection but also her emotional well being, it's been really great for my

mil though we've had difficulties continuing it. She sleeps better when

she exercises and is active. Now even though advanced stages, she can

manage to walk with great effort and coaching directions.

You'll need a good internist for her primary care and a good neurologist

with extensive experience on hand for consulting about medications etc.

Ideally they will work together well. Access to a pharmacist would also be

helpful to run all her medications by and make sure there's nothing

aggravating symptoms - MANY people with this are sensitive to medicines and

things should be introduced slowly to make sure they're tolerated and some

should be avoided completely. Don't try any kind of herb or vitamin

without knowledge and consent of her doctors but do make sure her nutrition

is good and her vit d levels are good (a blood test) as that does make a

difference in mood and energy (for anyone it does but especially with this

stuff). Many seniors are deficient in vit D and do well with

supplementation. Before she has any sort of surgery (they are sometimes

necessary) you'll be good to have the lbd chat with doctors and

anesthesiologists to make sure they understand the issues and avoid

commonly

used medications that can make this much worse. My mil was immediately

started on Exelon patch once daily - it aids memory and she is still on it.

She did not have any negative side effect however it did help her mental

brightness quite a lot and we were really glad for this. Because of

movement difficulties she was also started on Sinament - a dopamine agonist

for Parkinson's and has done very well on this medicine also and the

benefits were quickly seen. Not everyone is like this but some are so good

to try and see if there are movement or rigidity issues (neurologist will

be

able to access these things). If she is unable to sleep there might be

something mild that could help but sometimes just 8-10 mg melatonin is

enough, especially in early stages. My mil still benefits from the

melatonin though it's not enough she does much better with it than without

it. She had an issue with urinary frequency/urgency and instead of drugs

to manage this (which extremely aggravated the Parkinson's aspect in her)

we

tried a therapy called PTNS which her gynecologist administered and

medicare

covers. That worked really well and finally we were able to sleep without

having to get up and go to the bathroom every hour.

My mother in law is considered to be in advanced stages of this disease but

she is still somewhat functional and we can still carry on conversations.

She still enjoys watching jeopardy and wheel of fortune and cooking shows.

She can't read a novel anymore but she can read letters from family. She

cannot write letters and I have to help her find the words and write for

her. We just keep adapting as needed and keep moving on as possible.

She

can no longer eat a regular diet because she aspirates the food and has had

two bouts of aspiration pneumonia so far and someone has to feed her and

thicken her water and even spoon water into her mouth at times. She's

completely incontinent and has been for about 5 months now. She

hallucinates, has delusions, gets agitated, crabby, upset, discouraged,

sometimes unreasonable and always must have someone with her for her

safety

and emotional comfort. She has a lot of pain and often unable to express

this until it's overwhelming her and then it's an " emergency " to her. I

have an arsenal of approved medicines at hand as needed to manage symptoms,

including Zofran which is an antinausea medicine that comes in a

dissolvable

oral tablet. Zofran is considered a safe drug to manage nausea in DLB.

AVOID Compazine it has a lot of side effects. Nausea is common with this

and some medicines can cause it as well. I also have Claritin on hand

for

allergy symptoms - Claritin is also considered safe for allergies. Avoid

Benedryl and others. Also some plain Robitussin for coughs - but avoid any

other kind especially Robitussin DM. We use Miralax daily to keep BM's

regular in addition to stewed prunes. Constipation is a common problem

with

this as well. And a multivitamin and calcium (she has osteoporosis),

sublingual b-12 and 3000 iu Vit D (puts her in the mid normal range).

I'm not sure what kind of resources you have to put towards caregiving. We

do not have much but her husband's survivor's pension helps some. I moved

my studio to make way for her bedroom and eventually quit my job so I could

be on hand and provide half the caregiving. I hired a part time caregiver

to give myself a break and recently moved to having one overnight part time

so I could get some sleep. This arrangement allows my husband to

continue

working as he is not yet to retirement. These were all choices made as

fully aware as I could - the learning curve has been very steep! But I am

grateful to be able to do this. The bonus is I like her and enjoy her

company and have always gotten along well with her and so we have a bit of

a

friendship as well. I have made it my job over the years to know all of

her medical history, medicines and issues and her " history " so when she

can't remember I usually can. We have a very small family but we are close

so this works. The only thing I would change if I could is a bigger house

so we could all have some " space " as needed and I could continue working

part time and have room for a caregiver and funds for a full time

caregiver.

The caregiver, even part time, was initially very helpful in that

transition

from independence to dependence especially for toileting and bathing and

other personal care issues. My mil was horribly embarrassed for me to

clean

and change her diaper but having a caregiver helped that transition.

I hope you'll find some of this helpful. It's not the same for everyone

believe me but perhaps there are some things I've shared that will help as

you've decided to provide for her in home and avoid a nursing home. For

some it cannot be done this way or can be done up to a point (they do get

violent sometimes and dangerous) and for some it works best. We all find

and do the best we can do, no judgments whatsoever. BE SURE whoever is

doing the lions share of caregiving has a lot of support and relief and

time

off so they do not get burned out and worn down and be sure to take care of

yourselves extra well because caregivers have a very high rate of serious

health issues that develop from the stress of it all. Your mother

requires constant custodial supervision - 24 hours a day, 7 days a week.

This is like caring for a small child who has serious health and emotional

issues who also has the education and knowledge of an adult. And it's

your

mother and there will be that adjustment from mother-child to include care

provider-care receiver and that parent child roll is reversed. With five

siblings you will all be handling these things differently and having open,

supportive communication will be helpful to say the least. Along with the

" job " of caregiving you will all share and shoulder, will be the constant

walking grief of watching your mother decline and lose a little more each

month, week and then day to this terrible disease. They call this

" Active

Grieving " . It's good to be aware of it so you can all be supportive of

each

other and understand you will all have different degrees and stages of this

as well. I have been experiencing this all along and didn't know it had a

name until recently. Sometimes the only comfort I have is I'm able to

continue to provide for her somehow but I also have the full awareness that

there could, at any time, come a change that makes caring for her here

impossible. As unlikely as it seems now, she could become violent and

would

need short or long term care elsewhere, and that would be another

adjustment

on this road.

I'm really sorry Tony that your mother has this disease. I'm glad you're

here. I know you'll appreciate the suggestions and support. Please ask

any questions you might have, you'll find a lot of experience and love

here.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of tony bonillas

Sent: Wednesday, February 02, 2011 6:54 PM

To: LBDcaregivers

Subject: Mom

Good evening all,

I the oldest of six brothers and our mom has been diagnosed with this

disease.

This is new to us and we have all recently come to terms that mom is ill

and

will probably not get better. We have an appt. with the

neurologist/psychiatrist next week and we're looking for help on what

questions

we need to ask. Even though we have no sisters we've decided that mom will

be

cared for by all of us and do not want a home. She's not that bad yet but

we

don't see it getting better.

Recently she has been seeing me and my wife in her home in Arizona but

we're

in

Texas. Any suggestions on how we deal with that other than directly? I

don't

know but I believe she is having these hallucinations because we mentioned

we

might be going to Arizona for a visit. She's still very witty and has her

long

term memory. I know it's going to get tough but God will see us through

it.

Any suggestion for me and my brothers are welcomed.

Thank you for listening.

[Non-text portions of this message have been removed]

------------------------------------

Welcome to LBDcaregivers.

February 5, 2011

Dorothy, this is a most excellent post and a keeper for sure. I hope that

can sticky it somehow. Your MIL sure is lucky to have you caring for

her.

Courage

In a message dated 2/3/2011 5:37:09 P.M. Central Standard Time,

mailto:fullcircle%40sonic.net writes: