Re: How to make a plan?

[Guest guest]

In a message dated 7/18/2006 9:02:55 PM Eastern Daylight Time,

wtheri1022@... writes:

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

This is a good one. Something to think about with Dad....

:-)

G

[Guest guest]

, my husband and I have an open discussion quite often about his LBD.

He has read everything he can find to learn about it. Today, out of the clear

blue he said, " Honey, I think it has been a long time since I said thank you

for taking care of me. " He says it many times. We are most affectionate, and

loving.

Early on, when I saw that he was having trouble, we sat down with a glass of

wine, or beer, and had a quite time together. That is when I approached the

subject of seeing a doctor for the problems he had been having. I had been

writing them down for a few weeks, and brought out my list for him to see. He

agreed to see the doctor.

I was gentle and reassuring, and helped him to accept his needing a doctor

to help get through those difficult times a little easier.

He even willing gave up his car keys, as he didn't want to injure anyone.

He has a pretty good memory in some areas. It's the other symptoms that are

serious. Hallucinations, not being able to think through or plan out jobs,

etc. Not being able to do math at all, and he used to work with mega figures

for a living.

He also worked with electricity, and couldn't figure out how to install a

light fixture.

The hardest part on me was before the diagnoses. He worked so hard to be the

man he always was, doing things, and he was a real sweetheart, gentle and

kind, but, he changed and became easily agitated, and blew off steam to the

point that I would come in the house so I wouldn't have to listen to him

fussing. It could be a job he wanted to do, that I had not asked for, but as

soon as

he had someone to hear, he went to fussing. When he asked for my help,

because he couldn't figure out how to install the light. It took a week, here

and

there, but I gently showed him what to do every step of the way with

installing. Our son in law hooked up the electric. I finally realized he just

wasn't

able to do the jobs.

MY sister was never told, and there is nothing wrong with her as far as she

is concerned. Her daughter goes through a H---on earth from my sister

screaming at her. It is too late to talk it out now. My sister has become too

sick

to cope with knowing. She wouldn't remember. I feel had she known from the

very beginning

My sister would have gone through all they all go through, denial, etc, then

finally acceptance, but when she accepted something was wrong, and worked

with the doctor to help her feel better, everyone would have been better off.

Especially, I feel My niece would not be suffering so much.

My husband relaxed, and is his sweet self again, because he knows he is not

expected by anyone, even himself, to do what he can't do. He works well with

the doctor.

He reads much of the mail on the List. But, not by operating his own

computer. That is out of the question. He had one for a long time, and with my

writing instructions down, and sitting here beside him and telling him for

months,

he couldn't learn it. I was very careful in teaching him. Gentle does it.

The kids waited too long to install it for him. We had it here a year before it

was installed. He could have handled it then. We gave it to a grandson. Oh

well.

Yes, we continually talk openly. And, it is a blessing to still be able to

talk to your best friend. The time will come when I can't and that hurts. But,

we live TODAY, each day.

I will say, though, that each dementia patient is different, each

personality is different. You know your mother better than anyone. Can you get

on a

gentle one on one basis with her? Can you cry with her, so to speak? Empathize,

and make suggestions? Just about the immediate future. Not too long term,

but about now. Talk about what her diagnoses is, and how you want to help her

deal with problems associated with it. She has seen the doctor or you wouldn't

know she has LBD. Do get her to do the Legal stuff. That is where you have

to gain her trust and confidence. Gently and lovingly, a little here and a

little there. Like----

" Mother, Mom, or mama, " what ever you call her, " I want to help you all I

can, I know it will become more difficult for you, and I want to be here for

you. I know you are doing very well right now, (Name the areas), and tell her

how pleased you are, then go on, " but there will be a time that I will need to

help more, and name a few areas you need to discuss. Like " what if you

suddenly need to go to the hospital, and can't talk for some reason, you really

need to assign me, (or someone), with the power of attorney to help the

hospital know what your wishes are. To ack in your behalf. You will need other

legal things taken care of too, for this reason it is time to start thinking

about seeing a Senior Attorney. " Feel her out so that you can know just how

far

to go when you talk. Too much at once may overwhem her. You may have to

talk about it several times before she accepts it. But, it HAS to be done ASAP.

From there, once the discussion has been talked about, it is easier. She

will thank you for caring for her needs as my husband does.

I hope something in the long letter helps. You are a wise lady to be

thinking out these things now.

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.

In a message dated 7/18/2006 8:02:05 PM Central Daylight Time,

wtheri1022@... writes:

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

[Guest guest]

Hi, ,

>I am wondering if our LO's know they have dementia. Does anyone out

>there actually discuss it with their loved one? Do they understand? Can

>they remember? Do they make the association that what is happening to

>them is a disease?

>

I have talked with my mom about the fact that she has Lewy Body

disease. I don't call it dementia, because in fact it is more than

that, and by addressing it as a disease it becomes something she is part

of the team in working to slow the progression. We have talked about

the things that are connected to the disease - the hypersensitivity to

medications, the parkinsonisms (she particularly hates perseverating and

feeling " glued to the floor " ), the visuospatial problems and leaning (it

made her feel MUCH better to understand that her brain is sending her

signals that don't match how things really are in terms of whether she

is standing up straight or not), the memory and word finding problems

and the hallucinations. As I learn more about the disease and its

effects, I talk them over with her.

Mom has told me she's losing her mind, and I've told her that we'll do

our best to slow that down. She seems reassured with the benefits of

the Seroquel, the switch in doctors to one who works with me instead of

against me, and the Exelon is helping her remember names and words

sufficiently that she recognizes the improvement herself.

Mom remembers some things amazingly well and other things not at all.

If anything triggers her anxiety (which has been a lifelong problem), it

seems to severely impair her memory, or at least requires a lot of

reassurance about who and what and when. If it is not anxiety

provoking, she will remember like an elephant. There is a note she

received two months ago - she sent it home with me and wants me to bring

it back. I have no idea where it went, but she asks me just about every

time I see her whether I have brought it with me. Some days she is her

old self and some day she is paranoid and confused and in great need of

reassurance.

>But I know we have to make a plan for her decline. I don't even know how to

approach this. She will just go balistic if I try to just take over.

>

Mom fell and broke her arm, requiring surgery and rehab. While she was

in the convalescent center, we found that she had suffered ill effects

from anesthesia and pain medications that rendered her, along with being

off her feet too long, unable to walk unassisted any longer. It has

been hard for Mom, but she had come to rely on me a great deal anyway

over the past couple of years, and had given me power of attorney, so I

just offered to take careof this and take care of that so she wouldn't

have to worry about them. As she does decline, you may find your mother

becomes more amenable to letting you " take over, " but I think each of

us has had to find the best way to work with our loved ones to make the

transitions as manageable as they can be.

I did not talk to Mom much about future plans. I left them to be

discussed as they arose. This disease is sufficiently unpredictable

that while it's good to plan for every eventuality, what actually ends

up happening may be what you least expect. Currently, Mom and I talk

about what she would rather be doing and where she would rather

live...but she is aware of many of the reasons why she is living in a

nursing home. She just wishes, like crazy, that things could be as they

were and she could be in her own house with her own stuff and

independent once more. It is my biggest goal to make these days for mom

ones in which she is treated with respect, with warmth and caring, and

allowed her dignity and as much privacy and independence as possible. I

work toward that daily with the nursing home. Getting a telephone so

Mom has at least one thing that allows her some independence has been

more than worth the expense.

There are members of this list who have Lewy Body. I sure would like to

hear what they have to say about the question of discussing this with

the loved one who has been diagnosed but is not yet aware of the diagnosis.

jacqui (from Puget Sound)

[Guest guest]

Jacqui, I took this out of your letter. You described my husband to a " T " .

Imogene

In a message dated 7/18/2006 11:40:07 PM Central Daylight Time,

jacquiwa@... writes:

Mom remembers some things amazingly well and other things not at all.

If anything triggers her anxiety (which has been a lifelong problem), it

seems to severely impair her memory, or at least requires a lot of

reassurance about who and what and when. If it is not anxiety

provoking, she will remember like an elephant.

[Guest guest]

My husband and I talk about " the disease " often and how it has changed our lives

and how it will keep on changing things for us. He understands that LBD has him

and he has it....and he is trapped in a body that is devouring him..body and

mind. It is the only way we can deal with what we have to do...otherwise he

would be mad at me and I would be at him. YOU must make the plan, but only let

your LO know what they are capable of at the time. You can only deal with the

moment anyway. I have applied for Jerry to be admitted to the VA Home. There

is a 2-4 year waiting list. He does not know this. My hope is that he will not

need the home in 2 years and will be rid of the disease and not suffering

anymore. We know how that will come about, but we do not talk about it. I know

how frustrated you are. Just deal with the disease as much as you can and then

regroup to deal with more.

Myrna (68) in Missouri

Caregiver for Husband Jerry (71)

Diagnosed AD 1997, LBD 2004

How to make a plan?

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

[Guest guest]

Hi -

My Dad knew he was sick. Most of all he despised the trembling. When he asked

on a few occasions what was wrong, I tod him Parkinson thinking he would

understand Parkinson better than LBD or dementia. He would not accept my

explannation and say " Noooo! " He would then go on like there was never any

discussion. The Dr. would speak about his health issues in front of him and it

did not seem to phase Dad. My Father felt bad, had many body aches, and

somestimes admitted he could not think straight, but he never got the total

picture. I thnk I am glad he did not know he had this terrible disease. I

never gave Dad false reassurance, but he never gave up the hope of getting

better.

Sincerely,

Gerry

Wilmington, De.

Daughter & caregiver for Dick Deverell, who died on 9/11/05 after a more than 4

yr. battle with LBD.

How to make a plan?

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

[Guest guest]

My husband does now. For a while he thought there was nothing wrong, for a

while he couldn't remember what was wrong, and several times he has been angry

at the doctor. He has been keeping a daily log for years, and when we went to

Mayo he wanted to take along a copy for the doctor. As he went through the old

notebooks he was shocked to find how longterm and how extensive the symptoms

were. When he was given a straight answer from a doctor he trusted he was

finally able to accept it.

I have not ever been able to take over or force anything on him, I ask him what

he wants. Right now he is still himself. LBD comes up in our conversation

frequently, since it is making a big difference in our lives. We don't have

long emotional discussions about it and there are times when we just need to

not deal with it for a while. That's OK too.

His journal is now titled Me and My LewyBuddy.

Lewy Body symptoms rise and fall. Sometimes from one moment to the next. You

have to think about what's coming, and yet you have to accept that you will not

be in control.

It's One day at a time.

Lord give me the strength to change the things I can,

The courage to accept the things I can't change

The wisdom to know the difference.

How to make a plan?

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

[Guest guest]

Early on, my husband knew he had Alzheiemer's, because

he had two sisters and at least one brother, possibly

another that had it, and he had seen them deteriorate.

When he had trouble remembering things in the first

few years after Alzheimer's diagnosis, he would always

say " you know I can't remember, I have Alzheimer's. "

However, as the disease progressed, he mentioned it

less all the time, and now I don't think he knows what

he has even though he knows he feels bad and so

hopeless at times. If she is still fairly cognizant

at this time, you might just keep an eye on her

finances and possibly work with the bank to be sure

she doesn't do something with her money that would be

detrimental. I think as she gets further into the

disease, she will realize she can't take care of her

finances and will gradually let you take over. My

husband accepted the fact that I needed DPOA very well

as he knew he wasn't able to do things, and

thankfully, I had always done all the bookkeeping and

bill-paying, so I didn't have to learn it all. If it

had been the other way around, he would have had a lot

of learning to do about the finances. Perhaps at

first you could just suggest to her that if she needs

any help with her finances, you would be glad to help,

and if that meets with resistance, just let it go for

awhile. I think they know when it gets to be too much

and will then either have no interest or will turn it

over to you willingly.

--- wmtpower wrote:

> I am wondering if our LO's know they have dementia.

> Does anyone out

> there actually discuss it with their loved one? Do

> they understand? Can

> they remember? Do they make the association that

> what is happening to

> them is a disease? I don't know how to make a plan

> without discussing

> it with my Mom. Right now our plan is to move her to

> senior housing

> closer to me which is just a regular apt. living

> situation for seniors.

> She is agreeable to that. She can still take care of

> herself for the

> most part with a little help from me. But I know we

> have to make a plan

> for her decline. I don't even know how to approach

> this. She will just

> go balistic if I try to just take over. Thank you,

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

There is a lot of good advice in the e mails already given, however since my

Mom was like your Mom I thought I would also respond. At first my Mom

thought the Dr's were full of it.

She didn't want to take her meds either until I told her they were special

vitamins to help her memory and she would feel better.

I broached the subject of POA by telling her I was getting one for my

daughter to have in case I needed medical help and couldn't speak for myself.

Mom

was 80 at the time she was diagnosed and I stated we were all getting older

and I felt Lori (my daughter) would always do what I wanted. She agreed to

the POA and Medical POA. She didn't quite know that one was also for

financial. I told her what I wanted done when I was gone and asked her what

she

wanted done. She told me she wanted to be cremated and her ashes left at the

funeral home. That was when she was still thinking somewhat straight. That is

not what happened because she wanted to go home in the end and we took her

ashes to her home town to be buried in the family plot.

My whole thing is I told her what I wanted then asked her what she wanted.

Not mentioning Lewy Body at all. Just that she and I were getting older and

we should start to make arrangements and let someone know what we wanted. A

Will is a good thing to have also.

I did explain at another time when she was calmer what Lewy Body was and she

asked if there was a cure. I answered her honestly. I also reassured her

she did nothing wrong to get this disease. Did she remember, NO. I explained

Lewy to her quite a few times as we went along on this journey. One thing I

did tell her was that WE were in this together.

God Bless and Good Luck

Jacqui in Florida

[Guest guest]

,

My husband and I have always workeda as a " team " ....of course, a mother/daughter

is a different relationship but much of the same applies....I differ from what

many do in respect to dealing with the mental changes he has undergone during

the past 6 years, but it still is working and has gotten us through some tough

days.

I have had to call on every bit of pscyhology and teaching, training, and

counseling I have had in my background. But I have made committments to him and

myself along the way. 1. Never to lie to him, play " mind games " or

" manipulate " or ridicule him - talks about the REALITY of the situation, at the

right times, is very helpful in him maintaining his own perspective. 2. I have

given him medical knowledge with things he can relate to that explain why the

breakdowns are occurring (like electrical transmission wires being disconnected,

fiber optic lines " crossing up " signals, etc) 3. He has confidence that I will

never " leave " him....only help him through his battle and journey of life

together (whether part time or full time care...that security MUST BE THERE).

4. I give him choices about as much as possible, even the small things of

food,etc. 5. In talking reality, he wanted me to have a full power of

attorney, which allows him to not feel he has to take care of every choice. 5.

I never try to convince him to accept the " decline " ....we are always in the

process of doing things that are subject to show improvement, no matter how

slight or debated by the medical world, for the possibilities are much more

powerful than the " acceptance " and much less deceiving...it is what is REAL,

TODAY for him.

Sounds like you have a sensitivity for the need to keep respecting your mom, no

matter how mentally distracted she is...my husbands greatest fear when all this

started was that people (especially family) would consider him " crazy " .... I

have come to recognize that he can handle far more than most professionals in

the medical community feel can happen....and HE is still present with me, never

fully lost....someday he may get that way, but we don't focus on the " someday " ,

only the here and now and exercising the fine mind and personality he still has.

Sometimes I have to frequently remind him and add to the knowledge on #2 (he is

always aware of his " medical " care and makes choices about it), but I feel it

has had a great deal to do with why he has progressed the limited degree he has,

and actually been able to overcome some of the extreme psychotic states he was

into with the medications. Your mother is very normal in " going balistic " at

feeling she is losing control of her life...and I pray for blessed days ahead

for you and her both in your sensitivity and caring heart!

Marie

[Guest guest]

Hi ,

We decided not to discuss mom's disease with her in detail because she

was an all time worry champion her entire life. I think we really have

to take their prior personality into consideration. However, she wasn't

stupid and knew that something was wrong. I also think my mom expected

to have dementia as her mother had it too. We tried to make gradual

changes and always asked her opinions. Once your mom's disease

progresses you will have less and less imput from her but I always asked

myself what I would want done to me to help me make these difficult

choices.

Hope this helps.

Courage

[Guest guest]

Hi ,

Welcome to the group. My MIL has been told several times over the last

3 1/2 years and the doctors have spoken openly to her about her

condition. But my MIL does not retain the information so each time it's

new to her. But she is aware that something is wrong with her and it's

more frightening not to know why she is having these problems.

As far as looking for an assisted living facility I would recommend

trying to find one that has a dementia section as well as assisted

living. We did not do that and it probably was a mistake. When she

started to decline further we needed to move her and she had to leave

her new friends. Each change or move is very difficult and it would be

much easier to just move to another wing in the same facility. That is

my suggestion, it's really easy to look back and think of thing you

could have or should have done. But we all just do our best!

Take care,

Maureen

In LBDcaregivers , " wmtpower " wrote:

>

> I am wondering if our LO's know they have dementia. Does anyone out

> there actually discuss it with their loved one? Do they understand?

Can

> they remember? Do they make the association that what is happening to

> them is a disease? I don't know how to make a plan without discussing

> it with my Mom. Right now our plan is to move her to senior housing

> closer to me which is just a regular apt. living situation for

seniors.

> She is agreeable to that. She can still take care of herself for the

> most part with a little help from me. But I know we have to make a

plan

> for her decline. I don't even know how to approach this. She will

just

> go balistic if I try to just take over. Thank you,

>

[Guest guest]

we talked to dad about his lbd he couldnt remember the name so he called it the

little man in his head. he sometimes understood and hten other times he didnt ,

when dad was in his early stages, he read up on the lbd brochures that i had.

and he beleived he had it. then when he got into the later part of lbd he

couldnt remember anything about the disease. we just had to improvise as we

went along. make sure that all legal paperwrok is done, that is most

important. after that take it one moment at a time, go with your gut feelings,

if your gut says dont do something dont, if you are unsure just wait for a

little while and see what happens. good luck and hugs, sharon m

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- affiliated4you@... wrote:

In a message dated 7/18/2006 9:02:55 PM Eastern Daylight Time,

wtheri1022@... writes:

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

This is a good one. Something to think about with Dad....

:-)

G

[Guest guest]

I sure am sorry Midge. It is an awful journey we take down this long road to

nowhere.

Imogene

In a message dated 7/19/2006 2:32:21 PM Central Daylight Time,

mercygracey@... writes:

hi this is Midge and my Mama is in the bed all the time now. Christmas she

was still pretty ok but over nite it change.... whether she go nuts on you or

not you better make a plan quick. as the Bible ver se says you can make

your plans but the final outcome is in God's hands....

don't wait to the last minute or think you have time cause you don't kn ow

beleive me i am aware how difficult and painful it is to talk about for me

and i couldn't imagine how it hurt my Mama. But we got through it and now

everything hurts and it ain't about any stuff here on the earth .... it all

about physical and mental pain foir her and me having to watch what she's going

through. please make memories , spend time, and don't taker anything for

granted.. I miss any probable word she can speak cuase it's gone ... the only

thing i have today is her laying all notted up in a ball , a few grunts & crys,

and her beautiful blue eyes hopeing they'l open every morning...God bless

you and mny prayers

l.com> wrote:

I am wondering if our LO's know they have dementia. Does anyone out

there actually discuss it with their loved one? Do they understand? Can

they remember? Do they make the association that what is happening to

them is a disease? I don't know how to make a plan without discussing

it with my Mom. Right now our plan is to move her to senior housing

closer to me which is just a regular apt. living situation for seniors.

She is agreeable to that. She can still take care of herself for the

most part with a little help from me. But I know we have to make a plan

for her decline. I don't even know how to approach this. She will just

go balistic if I try to just take over. Thank you,

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

Do you Yahoo!?

[Guest guest]

Hi ,

I spoke to my FIL about LBD and he's always known that there was something

wrong. I gave him the brochure that I received from our website and he carries

it with him all the time. Every once in awhile I see him pull it out and read

it. He gets angry when he has lewy-attacks, calls himself stupid and says that

we can't trust a word he says. He cannot always remember the name of his disease

but he remembers that it's nothing he can control. It breaks my heart when he

asks me if they found a cure yet and I have to tell him no. He knows that things

will only get worse and he says that he trusts us to do what's best. He's so

easy going. We're lucky...no blessed is a better word.

I'm thinking that my MIL will have him put in a group home within the next

year or so. Just a feeling on my part. But my FIL is unable to care for himself

and from what my SIL has been telling me things are getting a tad worse. He's

not able to bath himself anymore, as he just stands outside the shower and put

his hand under the water.

So I guess my two cents is that you approach it in the way that you tell her

things are just gonna get worse and you need to know what she wants you to do.

Bring it up gently of course, and see what happens.

I will be praying for you and your mom. Hang in there.

Tori

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

I have read many, fine, helpful, hints on here the last couple of days. This

one from you, Marie, is one that I really take to heart, because this is how

I think. I was told repeatedly that you don't give patients any choices. (on

another List) I don't feel that way.

I feel respect, love, reassurance, and the patient's self worth should

always be part of the care routine. Giving choices and asking advice on what

they

think or feel about something helps them be a part of life, and it's

continuation.

My husband has very bad heart trouble. We have seen so many advances over

the years, which have come about just in the nick of time, that we feel the

same way about LBD advances. We know it's terminal, now. But, changes can come

about.

We have already been there with the heart, why not with this?

We don't put that hope high on our list, though, because of our age, and

health, but don't give it up either. We live simply for each other TODAY

Imogene

In a message dated 7/19/2006 9:47:36 PM Central Daylight Time,

judd7052@... writes:

,

My husband and I have always workeda as a " team " ....of course, a

mother/daughter is a different relationship but much of the same applies....I

differ

from what many do in respect to dealing with the mental changes he has

undergone

during the past 6 years, but it still is working and has gotten us through

some tough days.

I have had to call on every bit of pscyhology and teaching, training, and

counseling I have had in my background. But I have made committments to him

and myself along the way. 1. Never to lie to him, play " mind games " or

" manipulate " or ridicule him - talks about the REALITY of the situation, at the

right times, is very helpful in him maintaining his own perspective. 2. I

have

given him medical knowledge with things he can relate to that explain why

the breakdowns are occurring (like electrical transmission wires being

disconnected, fiber optic lines " crossing up " signals, etc) 3. He has

confidence

that I will never " leave " him....only help him through his battle and journey

of life together (whether part time or full time care...that security MUST BE

THERE). 4. I give him choices about as much as possible, even the small

things of food,etc. 5. In talking reality, he wanted me to have a full power

of attorney, which allows him to not feel he has to take care of every

choice. 5. I never try to convince him to accept the " decline " ....we are

always

in the process of doing things that are subject to show improvement, no matter

how slight or debated by the medical world, for the possibilities are much

more powerful than the " acceptance " and much less deceiving...it is what is

REAL, TODAY for him.

Sounds like you have a sensitivity for the need to keep respecting your mom,

no matter how mentally distracted she is...my husbands greatest fear when

all this started was that people (especially family) would consider him

" crazy " .... I have come to recognize that he can handle far more than most

professionals in the medical community feel can happen....and HE is still

present with

me, never fully lost....someday he may get that way, but we don't focus on

the " someday " , only the here and now and exercising the fine mind and

personality he still has. Sometimes I have to frequently remind him and add to

the

knowledge on #2 (he is always aware of his " medical " care and makes choices

about it), but I feel it has had a great deal to do with why he has progressed

the limited degree he has, and actually been able to overcome some of the

extreme psychotic states he was into with the medications. Your mother is

very

normal in " going balistic " at feeling she is losing control of her

life...and I pray for blessed days ahead for you and her both in your

sensitivity and

caring heart!

Marie

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

[Guest guest]

I hope medications will come about to keep LBD from getting any worse for

those in the early throws of LBD. I know the part of the brain that has been

destroyed is gone.

When the heart has an Infarction, that part of the heart is dead. If there

are many of them it spells heart failure. There is no cure past a certain

point.

I am referring to those that can comprehend are of course the ones to give

choices with love. I realize my husband will become totally unable to

understand anything in time, and that he will die, either of LBD or his heart.

But

then so does everyone else sooner or later from something.

We are here TODAY.

Imogene

In a message dated 7/19/2006 11:35:10 PM Central Daylight Time,

jchristensen1953@... writes:

Not to sound discouraging, but the difference is that

heart problems and lots of other illneses can often be

treated or managed. The problem with Alzheimer's and

LBD and other dementias is that once that brain tissue

is destroyed, it's gone, and there is no way at this

time for it to regenerate. I doubt there ever will

be, but our only hope is that some sort of preventive

medicine will be discovered that will keep people from

getting this horrible disease.

When the disease progresses as rapidly as my husband's

did in the past six months to a year, he could not

even assimilate what the disease was nor what it was

doing to him, and he was unable to make any kind of

decisions. I tried many times to ask him what he

wanted to do, and he couldn't even remember the

question. In the past year, I don't know how many

times he would tell me to " get a gun and shoot me. "

He knew something was wrong, but there wasn't any way

he could have helped make decisions on how to handle

his care. He was able before that time to sign his

DPOA, and we had previously had wills and living

wills, so we didn't have that decision. I don't

believe he even knows he's in a NH now. We have lived

in this house for 23 years, longer than we lived

anywhere else, and longer than he lived with his

parents, but for the last several months he was home,

he did not know where the bathrooms were, the bedroom,

etc., even though he had just come out of them. He

forgot his address, now he doesn't remember his

birthday, his age, and certainly not any other family

members, including me. It's as if there is a total

void for the most part; every once in awhile, there

will be a flash of something, but it is fleeting and

rare.

--- Iward27663@... wrote:

>

> I have read many, fine, helpful, hints on here the

> last couple of days. This

> one from you, Marie, is one that I really take to

> heart, because this is how

> I think. I was told repeatedly that you don't give

> patients any choices. (on

> another List) I don't feel that way.

>

> I feel respect, love, reassurance, and the patient's

> self worth should

> always be part of the care routine. Giving choices

> and asking advice on what they

> think or feel about something helps them be a part

> of life, and it's

> continuation.

>

> My husband has very bad heart trouble. We have seen

> so many advances over

> the years, which have come about just in the nick of

> time, that we feel the

> same way about LBD advances. We know it's terminal,

> now. But, changes can come

> about.

> We have already been there with the heart, why not

> with this?

>

> We don't put that hope high on our list, though,

> because of our age, and

> health, but don't give it up either. We live simply

> for each other TODAY

> Imogene

>

>

>

> In a message dated 7/19/2006 9:47:36 PM Central

> Daylight Time,

> judd7052@... writes:

>

> ,

>

> My husband and I have always workeda as a

> " team " ....of course, a

> mother/daughter is a different relationship but much

> of the same applies....I differ

> from what many do in respect to dealing with the

> mental changes he has undergone

> during the past 6 years, but it still is working and

> has gotten us through

> some tough days.

>

> I have had to call on every bit of pscyhology and

> teaching, training, and

> counseling I have had in my background. But I have

> made committments to him

> and myself along the way. 1. Never to lie to him,

> play " mind games " or

> " manipulate " or ridicule him - talks about the

> REALITY of the situation, at the

> right times, is very helpful in him maintaining his

> own perspective. 2. I have

> given him medical knowledge with things he can

> relate to that explain why

> the breakdowns are occurring (like electrical

> transmission wires being

> disconnected, fiber optic lines " crossing up "

> signals, etc) 3. He has confidence

> that I will never " leave " him....only help him

> through his battle and journey

> of life together (whether part time or full time

> care...that security MUST BE

> THERE). 4. I give him choices about as much as

> possible, even the small

> things of food,etc. 5. In talking reality, he

> wanted me to have a full power

> of attorney, which allows him to not feel he has to

> take care of every

> choice. 5. I never try to convince him to accept

> the " decline " ....we are always

> in the process of doing things that are subject to

> show improvement, no matter

> how slight or debated by the medical world, for the

> possibilities are much

> more powerful than the " acceptance " and much less

> deceiving...it is what is

> REAL, TODAY for him.

>

> Sounds like you have a sensitivity for the need to

> keep respecting your mom,

> no matter how mentally distracted she is...my

> husbands greatest fear when

> all this started was that people (especially family)

> would consider him

> " crazy " .... I have come to recognize that he can

> handle far more than most

> professionals in the medical community feel can

> happen....and HE is still present with

> me, never fully lost....someday he may get that way,

> but we don't focus on

> the " someday " , only the here and now and exercising

> the fine mind and

> personality he still has. Sometimes I have to

> frequently remind him and add to the

> knowledge on #2 (he is always aware of his " medical "

> care and makes choices

> about it), but I feel it has had a great deal to do

> with why he has progressed

> the limited degree he has, and actually been able to

> overcome some of the

> extreme psychotic states he was into with the

> medications. Your mother is very

> normal in " going balistic " at feeling she is losing

> control of her

> life...and I pray for blessed days ahead for you

> and her both in your sensitivity and

> caring heart!

>

> Marie

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

[Guest guest]

Not to sound discouraging, but the difference is that

heart problems and lots of other illneses can often be

treated or managed. The problem with Alzheimer's and

LBD and other dementias is that once that brain tissue

is destroyed, it's gone, and there is no way at this

time for it to regenerate. I doubt there ever will

be, but our only hope is that some sort of preventive

medicine will be discovered that will keep people from

getting this horrible disease.

When the disease progresses as rapidly as my husband's

did in the past six months to a year, he could not

even assimilate what the disease was nor what it was

doing to him, and he was unable to make any kind of

decisions. I tried many times to ask him what he

wanted to do, and he couldn't even remember the

question. In the past year, I don't know how many

times he would tell me to " get a gun and shoot me. "

He knew something was wrong, but there wasn't any way

he could have helped make decisions on how to handle

his care. He was able before that time to sign his

DPOA, and we had previously had wills and living

wills, so we didn't have that decision. I don't

believe he even knows he's in a NH now. We have lived

in this house for 23 years, longer than we lived

anywhere else, and longer than he lived with his

parents, but for the last several months he was home,

he did not know where the bathrooms were, the bedroom,

etc., even though he had just come out of them. He

forgot his address, now he doesn't remember his

birthday, his age, and certainly not any other family

members, including me. It's as if there is a total

void for the most part; every once in awhile, there

will be a flash of something, but it is fleeting and

rare.

--- Iward27663@... wrote:

>

> I have read many, fine, helpful, hints on here the

> last couple of days. This

> one from you, Marie, is one that I really take to

> heart, because this is how

> I think. I was told repeatedly that you don't give

> patients any choices. (on

> another List) I don't feel that way.

>

> I feel respect, love, reassurance, and the patient's

> self worth should

> always be part of the care routine. Giving choices

> and asking advice on what they

> think or feel about something helps them be a part

> of life, and it's

> continuation.

>

> My husband has very bad heart trouble. We have seen

> so many advances over

> the years, which have come about just in the nick of

> time, that we feel the

> same way about LBD advances. We know it's terminal,

> now. But, changes can come

> about.

> We have already been there with the heart, why not

> with this?

>

> We don't put that hope high on our list, though,

> because of our age, and

> health, but don't give it up either. We live simply

> for each other TODAY

> Imogene

>

>

>

> In a message dated 7/19/2006 9:47:36 PM Central

> Daylight Time,

> judd7052@... writes:

>

> ,

>

> My husband and I have always workeda as a

> " team " ....of course, a

> mother/daughter is a different relationship but much

> of the same applies....I differ

> from what many do in respect to dealing with the

> mental changes he has undergone

> during the past 6 years, but it still is working and

> has gotten us through

> some tough days.

>

> I have had to call on every bit of pscyhology and

> teaching, training, and

> counseling I have had in my background. But I have

> made committments to him

> and myself along the way. 1. Never to lie to him,

> play " mind games " or

> " manipulate " or ridicule him - talks about the

> REALITY of the situation, at the

> right times, is very helpful in him maintaining his

> own perspective. 2. I have

> given him medical knowledge with things he can

> relate to that explain why

> the breakdowns are occurring (like electrical

> transmission wires being

> disconnected, fiber optic lines " crossing up "

> signals, etc) 3. He has confidence

> that I will never " leave " him....only help him

> through his battle and journey

> of life together (whether part time or full time

> care...that security MUST BE

> THERE). 4. I give him choices about as much as

> possible, even the small

> things of food,etc. 5. In talking reality, he

> wanted me to have a full power

> of attorney, which allows him to not feel he has to

> take care of every

> choice. 5. I never try to convince him to accept

> the " decline " ....we are always

> in the process of doing things that are subject to

> show improvement, no matter

> how slight or debated by the medical world, for the

> possibilities are much

> more powerful than the " acceptance " and much less

> deceiving...it is what is

> REAL, TODAY for him.

>

> Sounds like you have a sensitivity for the need to

> keep respecting your mom,

> no matter how mentally distracted she is...my

> husbands greatest fear when

> all this started was that people (especially family)

> would consider him

> " crazy " .... I have come to recognize that he can

> handle far more than most

> professionals in the medical community feel can

> happen....and HE is still present with

> me, never fully lost....someday he may get that way,

> but we don't focus on

> the " someday " , only the here and now and exercising

> the fine mind and

> personality he still has. Sometimes I have to

> frequently remind him and add to the

> knowledge on #2 (he is always aware of his " medical "

> care and makes choices

> about it), but I feel it has had a great deal to do

> with why he has progressed

> the limited degree he has, and actually been able to

> overcome some of the

> extreme psychotic states he was into with the

> medications. Your mother is very

> normal in " going balistic " at feeling she is losing

> control of her

> life...and I pray for blessed days ahead for you

> and her both in your sensitivity and

> caring heart!

>

> Marie

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>