Re: Mom

[Guest guest]

Tony,

As a nurse, I am going to jump right in here and tell you that 6 sons means that

you all have wives that must be involved in this process as well.

I suggest that you all have a family care giver meeting and have them on a

regular basis. You will all need to be on the same page. You will need to

identify long and short term goals on a regular basis.

These is a piece that every family care giver does not take into consideration-

that is boundaries and setting limits.

There are many unpleasant tasks that occur with care giving- toileting, bathing,

not sleeping, maybe dealing with terrible unpredictable behaviors.

Many family caregivers go into this with good intentions. They have no idea what

they are agreeing to do. Care giving can last for as long as 20 years. YEs,

that long.

So there are many things that you all need to discuss- vacation coverage,

holiday coverage, weekend coverage.

That is the surface stuff. First the legal paper work.

Here is a list of all the important things that need to be put into place from

making changes to the home to legal paper work-

http://www.aginghomehealthcare.com/planning-in-advance.html

Here is info on how to run a family care giver meeting

http://www.aginghomehealthcare.com/family-communication.html

That is a start for you. I do not want to overwhelm you. I just want you to get

off on the right foot.

Please feel free to ask more questions.

Diane Carbo

www.aginghomehealthcare.com

www.dementiacaresecrets.com

>

> 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.

>

>

>

>

>

[Guest guest]

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.

[Guest guest]

Dorothy,

What a wonderful and extensive, well-thought-out response! I got some things

from it as well!

Lori

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.

[Guest guest]

well said dorothy and also,

 

lewy body DISEASE is what we called it to daddy,  and that worked,   the

doctor and i jsut shoretened it to lbd,  andnever used the wrod dementia,

hospice used disease as well,  jsuta  few little suggestons hugs. sharon

Subject: Re: Mom

To: LBDcaregivers

Date: Thursday, February 3, 2011, 9:19 PM

 

Dorothy,

What a wonderful and extensive, well-thought-out response! I got some things

from it as well!

Lori

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.

[Guest guest]

Wow...Dorothy...you sure covered most everything.

With my mom, she would have been more confused if her caregiver kept on

changing. Perhaps now she can handle having each son/DIL at scheduled

intervals, but when her LBD advances she will probably not be able to tolerate

that...she will need continuity.

The important things that I want to comment on are in treating her at her

cognitive age level as the disease progresses, I found that doing some things

that may be a comfort to a child really went a long way. When Mom would go to

bed in the early evening, I would read a story from one of the Chicken Soup for

the Soul books...they are relatively short stories, but it put Mom into that

relaxing mode and although I thought at times that she was sleeping while I was

reading, she was not, just laying still with her eyes closed taking it all in.

Another thing that seemed to be a comfort to my mom was when my brother was

staying with us, he was sleeping in Mom's bed and so I had Mom sleeping with me

in my bed. When he went back home she asked me if I would change the sheets on

her bed, and I was tired and told her to just sleep with me (actually I really

was hoping that she would say yes, because then I would know if she was getting

up and down and know that she was safe. When I did tell her to sleep with me

that night, she said 'I was hoping that you would say that!' So, just like a

child that is afraid of the dark, or afraid of what might be in the closet,

being able to sleep near a loved one is a big comfort.

I think that Doris hit on almost everything (Good job, Doris!) and every person

is different. You just need to take it step by step and day by day. Patience

is number 1. If you don't have patience, then your stress and anxiety will be

felt by your Mom. Keep cool and things will go a whole lot easier.

Please try to see if there is a LBD Caregivers Support Group in your area. You

can find this out by going to LBDA.org. Under the tab to find support, I

believe there is also a virtual all-mens group that meets through a conference

call. Perhaps you and your brothers could join that group and you will find a

lot of guys with similar circumstances helping each other...and in a support

group, no one has not been where you are.

God bless you and your brothers.

Joan

>

> 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.

>

>

>

>

>

>

>

[Guest guest]

Good point, Sharon.

I tell people that suspect that a friend or family member has LBD, especially

before a doctor diagnoses it, to not tell them that it is dementia...it's better

to use honey instead of vinegar especiallly with the word dementia, which is a

pretty scary word to hear about yourself. Once the diagnosis is made, no matter

if you loved one looks alert or in a stupor, they do hear and understand the

word dementia. By not introducing that word before the doctor's diagnosis will

most likely make it a whole lot easier to get them to a doctor and go through

all of the testing before diagnosed.

>

>

>

> Subject: Re: Mom

> To: LBDcaregivers

> Date: Thursday, February 3, 2011, 9:19 PM

>

>

>  

>

>

>

> Dorothy,

>

> What a wonderful and extensive, well-thought-out response! I got some things

from it as well!

>

> Lori

> 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.

>

>

[Guest guest]

Beautiful Joan! There is so much to cover no one can do it all (and I'm so

glad I don't feel I have to LOL) and I had all kinds of notes of additional

thoughts. I love the storytelling. At bedtime, after nebulizer, after

gaviscon for the giant hiatal hernia, after everything is done and she and

her son say their goodnights, I go in to say goodnight and make sure the

pillows are attached to the bed rail properly and blankets etc arranged so

she hopefully won't get too hot or cold and I sit with my arms resting on

the padded bed rail and tell her what a good day it was today and how glad

we are that she's here with us and how proud we are of her for the hard work

she does to keep well and then talk about the animals and the garden, making

up stories about everyone is sleeping and resting. The dog is sleeping,

both kitties, Jaspurr and are sleeping. Myrtle the turtle (a

favorite of hers) is sleeping, the turkeys are sleeping high in the trees,

raccoons are sleeping with tummies full of corn, the deer are sleeping in

their soft beds of grass and on and. We live out in the woods and she is

familiar with all of these animals, many of them she can see right from the

windows each day. Other times I've picked up a couple pictures of her kids

when they were very young and talk about them being some of my favorite

pictures, did you take them? Were they in Tokyo? You must have been very

happy. I remark how happy the kids look sitting in a chair together sharing

a book there on the porch with the warm sun shining in. wonder what kind of

story it was, trying to bring pleasant happy thoughts. I am going to

try finding a copy of that book you mention and see if she likes it. I've

had a hard time with the children's books because she thinks the kid's books

are kind of silly. I'm so glad you brought this up Joan because this is

got to be the most favorite time of the day I have with her. We are so

lucky so far and I hope and pray that will continue - that we can keep

caring for her here in our home through to the end, but we are fast

approaching some crossroads points and it will take a lot to keep her here

with proper medical support, not impossible but difficult to navigate.

The advice about caregivers is also very good. With my husband and I she is

not having any trouble and she feels very close to us both. If there's any

question about medicine or exercise or food to eat or if she should do

something she looks to me for guidance - she knows I have it down and have

for many many years. Sometimes I'm surprised to see that she is still

asking if I want her to go for a walk or take the pill etc. I explain

things to her a lot too - like a child, just like I would my own children at

a young age. If she can understand or not or completely I can't tell but I

know it does makes a difference. Sometimes even if she doesn't understand

I believe just the calmness in my voice and manner as I explain it reassures

her. I always work to remain calm and smile and in daily crisis management

it isn't always easy. I have now two relief caregivers, both wonderful

very warm, very experienced women who have been down this road many times.

One is still grieving for the woman she cared for 7 years who passed in May.

My husband and I have learned a great deal from them both and continue to.

My mil has bonded strongly to one and fairly strong to the other. For the

time being she has no anxiety about being with either, even when my husband

and I leave the house at the same time (we went out to dinner Saturday night

for once on a very long time). But I also know this can change anytime.

Now about sleeping arrangements I'll share that the two caregivers both have

told me this is common that if they have someone next to them sleeping they

sleep much better. At night they might feel alone or lost and unsure and

having someone there is very comforting. One lady tells me she sleeps on a

blanked on the floor right next to the hospital bed for three years with the

woman she cared for. The other has sleep on a cot or in a recliner or a

sofa in the room. All of these comfort and reassure when they cannot sleep

alone without anxiety. When I sit with mom through the night, as she's been

fighting this never ending uti, she does sleep but as soon as I get up to

tip toe off to the sofa to get some sleep she's awake again. I will try to

find a solution for this.

These are really vital good points and I'm so glad you shared them

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Joan

Sent: Monday, February 07, 2011 10:31 PM

To: LBDcaregivers

Subject: Re: Mom

Wow...Dorothy...you sure covered most everything.

With my mom, she would have been more confused if her caregiver kept on

changing. Perhaps now she can handle having each son/DIL at scheduled

intervals, but when her LBD advances she will probably not be able to

tolerate that...she will need continuity.

The important things that I want to comment on are in treating her at her

cognitive age level as the disease progresses, I found that doing some

things that may be a comfort to a child really went a long way. When Mom

would go to bed in the early evening, I would read a story from one of the

Chicken Soup for the Soul books...they are relatively short stories, but it

put Mom into that relaxing mode and although I thought at times that she was

sleeping while I was reading, she was not, just laying still with her eyes

closed taking it all in. Another thing that seemed to be a comfort to my mom

was when my brother was staying with us, he was sleeping in Mom's bed and so

I had Mom sleeping with me in my bed. When he went back home she asked me if

I would change the sheets on her bed, and I was tired and told her to just

sleep with me (actually I really was hoping that she would say yes, because

then I would know if she was getting up and down and know that she was safe.

When ! I did tell her to sleep with me that night, she said 'I was hoping

that you would say that!' So, just like a child that is afraid of the dark,

or afraid of what might be in the closet, being able to sleep near a loved

one is a big comfort.

I think that Doris hit on almost everything (Good job, Doris!) and every

person is different. You just need to take it step by step and day by day.

Patience is number 1. If you don't have patience, then your stress and

anxiety will be felt by your Mom. Keep cool and things will go a whole lot

easier.

Please try to see if there is a LBD Caregivers Support Group in your area.

You can find this out by going to LBDA.org. Under the tab to find support, I

believe there is also a virtual all-mens group that meets through a

conference call. Perhaps you and your brothers could join that group and you

will find a lot of guys with similar circumstances helping each other...and

in a support group, no one has not been where you are.

God bless you and your brothers.

Joan

[Guest guest]

Dorothy...it was very late last night when I was reading/responding to posts...I

got your name right at the beginning of the post, but then later in the post I

called you Doris...sorry about that Dorothy!''

> >

> > 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.

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Eileen,

I'm so sorry about your mom. Do you know what medications she's was taking

before going to the hospital and what they gave her in the hospital and what

they are giving her in rehab? Is there any chance she could have a uti?

Those are the things to look at first and they can both cause what you're

describing with your mom.

It's always hard to tell for sure, I know, we've been there and sure we

will be there again. Sometimes changes can seemingly happen overnight.

My mil went incontinent overnight and within two weeks was completely

incontinent. They do usually bounce back if it's an infection or

medication issue causing the trouble. You should try to get this figured

out before she comes home if possible.

Glad you are here - and speaking up.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Eileen

Sent: Monday, February 21, 2011 5:41 AM

To: LBDcaregivers

Subject: Mom

I have so much going through my mind that I don't even know where to start.

My mom moved in with my husband, daughter and me in December of 2009 with a

diagnosis of mild, senile dementia. I was not satisfied with the diagnosis

and contacted our local council on aging agency who referred me to another

doctor at the Cleveland Clinic. In August of 2010 mom was diagnosed with

LBD. There weren't many changes except that she became very apathetic, no

interest in doing things she normally did, she became incontinent almost

over night, hallucinations, but not often, I could go on and on. But now...2

weeks ago I went in to check on her and found her on her bedroom floor. She

was very disoriented, didn't know where she was, I called 911. She was in

the hospital for 5 days, nothing broken but very weak and confused. She is

now in a rehab facility and doing great physically but her mental status has

declined terribly. She isn't talking much at all, I am lucky to get on! e

word answers. She is seeing people that aren't there, she says she is there

to visit my grandma, forgot that she had a son.

Can this disease progress this quickly? I keep telling myself she will be

better mentally when she gets back home with me but what if that is not the

case??

;

Thanks for listening...feels good to get it all out1

Eileen

[Guest guest]

Hi Dorothy,

 

Thank you for responding.

 

All bloodwork, ct scans, urine tests came back negative.  She was taking

percocet for the pain from her fall but they stopped that last Friday...maybe

that's it??  It's just such a shock to me.  She is working with a speech

therapist, she started today so we shall see what happens.  The plan is to

bring her home on Friday.

I am glad that I found this just so that I can " vent " .  It sure does help to

talk to others that are going through the same thing.

 

Thank you again!

 

Eileen

Subject: RE: Mom

To: LBDcaregivers

Date: Monday, February 21, 2011, 7:36 PM

 

Hi Eileen,

I'm so sorry about your mom. Do you know what medications she's was taking

before going to the hospital and what they gave her in the hospital and what

they are giving her in rehab? Is there any chance she could have a uti?

Those are the things to look at first and they can both cause what you're

describing with your mom.

It's always hard to tell for sure, I know, we've been there and sure we

will be there again. Sometimes changes can seemingly happen overnight.

My mil went incontinent overnight and within two weeks was completely

incontinent. They do usually bounce back if it's an infection or

medication issue causing the trouble. You should try to get this figured

out before she comes home if possible.

Glad you are here - and speaking up.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Eileen

Sent: Monday, February 21, 2011 5:41 AM

To: LBDcaregivers

Subject: Mom

I have so much going through my mind that I don't even know where to start.

My mom moved in with my husband, daughter and me in December of 2009 with a

diagnosis of mild, senile dementia. I was not satisfied with the diagnosis

and contacted our local council on aging agency who referred me to another

doctor at the Cleveland Clinic. In August of 2010 mom was diagnosed with

LBD. There weren't many changes except that she became very apathetic, no

interest in doing things she normally did, she became incontinent almost

over night, hallucinations, but not often, I could go on and on. But now...2

weeks ago I went in to check on her and found her on her bedroom floor. She

was very disoriented, didn't know where she was, I called 911. She was in

the hospital for 5 days, nothing broken but very weak and confused. She is

now in a rehab facility and doing great physically but her mental status has

declined terribly. She isn't talking much at all, I am lucky to get on! e

word answers. She is seeing people that aren't there, she says she is there

to visit my grandma, forgot that she had a son.

Can this disease progress this quickly? I keep telling myself she will be

better mentally when she gets back home with me but what if that is not the

case??

;

Thanks for listening...feels good to get it all out1

Eileen