Re: Re: Advice from Dann

[Guest guest]

,

I had kind my own kind of a " Naranja moment " today.

Funny thing, I was cleaning up a bookshelf this morning, and found a 3 by 5

receipe card that my Mom had written in 1995.. She had signed and dated it: she

wrote something like: " This is to exhonorate my family from all guilt

concerned with getting hurt my outside activities with the critters. "

Mom held her own with everyone and refused to let anyone call the shots for

her. She was still doing it her way, when she fell and broke her hip taking

that sack of apples out to her horses.

Mom's statement was written more eliquently than I can recall just now, but

it was a result of one of her friends falling and nearly freezing to death

while doing winter -chicken chores-. Mom had gotten her wrist broken the prior

year, fooling around with our horses.

Mom always was a risk taker. She proudly told us that as a teenager, how she

climbed to the top of the windmill and hung down by her knees like an acrobat.

There were a lot of times, the struggle with a big self- guilt trip, tended to

cause me grief, about things that I could or should have been able to do

better. However, in the last analysis, without 20-20 forsight, my family and I

would have stumbled down the same paths. We did as best we could.

I am so sorry if my bittersweet memories of my mom caused you additional

anxiety. My mom did it " Her Way " until she couldn't anylonger.

Sounds like you have a good handle on the issues with your mom. None of this

is easy.

Dann

wtheri1022@... wrote:

[Guest guest]

, Moving is very difficult for dementia patients. They sometimes go

into deeper dementia. Make your plans to keep from having to move your Mother

in

a few months. At her age, she could change overnight. LBD has some memory

very near the end of their lives, sometimes. It is spotty but is there. At

other times they can't remember a thing. But, waiting for her to become worse

MAY

aggravate her dementia even worse.

That is something to consider when placing her. Just don't forget, moving

can be very stressful for an LBD patient, who may or may not remember.

Imogene

In a message dated 12/16/2006 11:17:44 AM Central Standard Time,

wtheri1022@... writes:

I am a little worried about just moving her to the new apt by me. Just

because it will cause her a certain anxiety and will be " different " from

what she is

used to. I just keep telling her and myself that the move is only a week of

inconvenience and we must focus on how great it will be after she is settled

in

cuz we will be neighbors!

[Guest guest]

Hi ,

I don't often send messages, but yours echoes my own situation to a certain

extent.

My mom was diagnosed very early so for almost two years she has been living

independently,in a seniors apartment building about 10 min. drive away from me.

She had a few falls early on, but it has been a long time since she has fallen.

She doesn't have too many hallucinations, at least not that she is telling us.

We are lucky in that in her building, (we are in Mississauga, ontario,

canada), there is a service in which personal care workers monitor her meds, she

has life call (although she very seldom wears the button), she checks in and out

with them when she is leaving her apartment, a cleaning person comes once a week

although mom still does her own cleaning with before or after the lady comes.

So that has taken a load off of our minds.

She is also in great health physically. No other meds besides Reminyl and

Wellbutrin.

Gradually over the last year, she has given me her bank card and I make sure

she has a set amount of cash every week. I also pay her bills. She will go

across the road to pick up a few things and once a week my sister or I will take

her for a bigger shopping. She is just now becoming very confused by almost

everything, so we know that there is a bigger change happening. She does her

own laundry and ironing but doesn't like doing them now which is new for her. I

think she is finding the process confusing.

She is very conscious of making mistakes and so only feels comfortable around

my sister and I.

Like you we have always dreaded the thought of a nursing home. However, as

soon as we heard the diagnosis, we looked in our area at several facilities and

have chosen three which we thought were the best so that when we do have to make

that decision we will not have to rush. We have not started any process to get

her in one because as you said she is still too cognizant and aware to put her

in that situation. We both feel that we will take that step only when her

safety and ability to take care of herself are beyond our capabilities and hers

in the present situation. She does not cook, but heats things in the microwave.

We have hired a lady to come once a week for four hours who we have told her

is a volunteer recommended by the doctor. That gives us a little break and is a

new, non-threatening face with whom she can interact.

As you said, the move closer to you will be a big adjustment. My mom moved

four years ago to be closer to us and I really think that her problems started

to become evident to us around that time.

So (just my opinion) I don't think that you have to worry at this time about

24 hour care or NH. It sounds like your mom is coping relatively well. If you

can access community services and maybe get some regular assistance or volunteer

helper, that might help in some aspects. Also I think your one day at a time

approach is the best one to take. We all know what the outcome of this crummy

disease will be but if we try to anticipate what will happen we will not be in

very good shape emotionally, mentally or physically. Making sure that she is

safe is a big priority no matter what decision we make.

I don't know if I really addressed your own situation but I identified with

you when I read your message.

Take Care. Doris Karatoprak from Mississauga Canada

Primary caregiver for mom Ramona aged 77. Originally diagnosed with AD in

Sept. 2004 and then with LBD in March 2005.

wtheri1022@... wrote:

Dann

Your concern regarding 24 hour companionship for my mom sent a wave of

anxiety over me. After months of panic attacks over what is going to happen to

us I

have finally settled into a " one day at a time " approach which has given me

some peace. Maybe I am in denial. The thing about my mom is that aside from this

horrible LBD, which according to the DR she is in an early stage, she is in

very good health for her 83 years. She lives on the top floor of her building

and climbs 15 stairs with a spring in her step. She has no other health issues

and takes no other meds. She gets dressed every day, prepares simple meals,

pays her bills and her place is tidy. She walks to the post office, bank and

corner market. As long as she does these things I feel that she can manage on

her

own with some guidance and help from me. Our goal is to keep her independent

for as long as possible. Certainly there have been changes and I do have to

check in with her daily. Mostly it is her behavior, memory, and thought

processes that are in decline and although that causes stress for her and our

family,

she is harmless to herself and others.

I keep reading the info on when to get help and when to change the living

situation. So far she doesn't fit the profile for 24 hour care. And when she

moves closer to me I can physically check on her every day. Those 15 stairs do

worry me. The new place by me has an elevator.

I dread the thought of placing her somewhere in assisted living or NH. I

think that unless she is completely out of it she will not do well in that kind

of

living. She is too suspicious and paranoid, always has been, to be living in

such close proximity to other people.

I am a little worried about just moving her to the new apt by me. Just

because it will cause her a certain anxiety and will be " different " from what

she is

used to. I just keep telling her and myself that the move is only a week of

inconvenience and we must focus on how great it will be after she is settled in

cuz we will be neighbors!

Maybe I am blowing it? Maybe I am out of touch with reality? Maybe someone

else has a mom in the same stage as mine and can weigh in with their approach.

thanks to everyone

& Mom ginny 83 yrs.

[Guest guest]

Dann,

What a wonderful message to get from your Mom at this time of year. I don't

know if it is the Holidays or going over the old Christmas card lists or reading

some of the letters I wrote for her to send to her friends, but I have been

having lots of tears come from somewhere.

Your Mom did know what she was doing and she also knew she was having some

problems. How wonderful that she thought to write that kind of a note for you.

And it must have have been for you, you found it.

Have a Very Merry Christmas and Happy New Year.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Advice from Dann

,

I had kind my own kind of a " Naranja moment " today.

Funny thing, I was cleaning up a bookshelf this morning, and found a 3 by 5

receipe card that my Mom had written in 1995.. She had signed and dated it: she

wrote something like: " This is to exhonorate my family from all guilt

concerned with getting hurt my outside activities with the critters. "

Mom held her own with everyone and refused to let anyone call the shots for

her. She was still doing it her way, when she fell and broke her hip taking

that sack of apples out to her horses.

Mom's statement was written more eliquently than I can recall just now, but

it was a result of one of her friends falling and nearly freezing to death

while doing winter -chicken chores-. Mom had gotten her wrist broken the prior

year, fooling around with our horses.

Mom always was a risk taker. She proudly told us that as a teenager, how she

climbed to the top of the windmill and hung down by her knees like an acrobat.

There were a lot of times, the struggle with a big self- guilt trip, tended to

cause me grief, about things that I could or should have been able to do

better. However, in the last analysis, without 20-20 forsight, my family and I

would have stumbled down the same paths. We did as best we could.

I am so sorry if my bittersweet memories of my mom caused you additional

anxiety. My mom did it " Her Way " until she couldn't anylonger.

Sounds like you have a good handle on the issues with your mom. None of this

is easy.

Dann

wtheri1022@... wrote:

[Guest guest]

Doris and ,

I had a Mom very much like yours. She was living on her own and doing her own

stuff. She had put her bills into automatic pay for the most part. And this was

in the early stages. What is interesting as I think back now there is lots of

early stage stuff that I thought nothing about until after.

She would come and live with me for 6 months at a time and then she would have a

big fight with me and want to go home.

Mom lived 12 hours away from me and I know at some point, I started to call

almost every day. I still didn't think much about it and knew she wasn't doing

as well as she had been, but she was healthy and took care of her home and her

self pretty well. After all she was getting older. (This was just preceding

her coming to live with me,

And she talked a good story. I did have a friend of hers call me to say I " had

to do something about " my Mom. I explained she wouldn't come and live with me

and I wondered what she wanted me to do.

So I made my yearly trip up there and she had lost all sorts of weight. (Can't

see that by phone.) Her kitchen floors were filthy and when I said something

about it, she denied it. She explained she scrubbed at least weekly. ( Or

thought she did!) And I asked her when she had eaten last and she said she

always fixed her own dinner. (I found it in the microwave. She had heated it

and I guess forgot to eat it.)

So again she refused to come home with me and I told her I was going to get

someone who could help more than I could at such a distance. She laughed and

just said she would fire them. (She didn't and she really needed them by then.)

And she did have someone close she could call on that fateful day that she

" didn't feel good.)_ The help I hired did come down and took her to the

hospital. I was told the house was full of gas!!!!when they got there.

And it was the MD that said to her, she couldn't live alone any more. She could

go to the nh or come and live with me. I think she chose me because she

thought she had a better chance of getting back to her house.

I tell you this long story, to say things are gradual. And I missed most of it

or tossed it off as, well she is getting older. My favorite was " what could I

do if she refused. " And that was how I felt. I do wish I had understood

better. I really thought she was thinking clear until that last time about a

month before I hired people to stay with her.

The neighbors told me stories afterward. And I know I was much further away

than you are going to be. But this disease is so much easier to look back on

and see, than it is to see what is happening at the time. And my Mom didn't

want me to think for a minute that she was " losing " her mind. So she got real

good at faking it. Or I didn't know how to gently take charge without her

knowing. Once in a while I would try something and when it worked, I was always

surprised. Made her a MD appointment when I was home that summer. She told me

she didn't need to see an MD and she wasn't going. I didn't know what to do or

if he would believe what I was about to tell him. The day of the appointment

she said she wasn't going. I said " fine, since you made the appointment, you

call and cancel. You can't not show up for an appointment. " And she went and

got ready to go. I don't think she could figure out how to call at that point.

And she wasn't sure she hadn't made the appointment. And I was surprised!

I know this is getting long. This disease is gradual and a day at a time. And

you are doing well that your Mom will move! I think it is important to

remember, there is a disease and it is progressing, no matter how slowly. Don't

have to get anxious and you might need help with her and it is ok to get it. We

are here to support you in whatever you need to do. At some point, you will

be thinking better than she is and you might not know it.

Hugs and Merry Christmas.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Advice from Dann

Hi ,

I don't often send messages, but yours echoes my own situation to a certain

extent.

My mom was diagnosed very early so for almost two years she has been living

independently,in a seniors apartment building about 10 min. drive away from me.

She had a few falls early on, but it has been a long time since she has fallen.

She doesn't have too many hallucinations, at least not that she is telling us.

We are lucky in that in her building, (we are in Mississauga, ontario,

canada), there is a service in which personal care workers monitor her meds, she

has life call (although she very seldom wears the button), she checks in and out

with them when she is leaving her apartment, a cleaning person comes once a week

although mom still does her own cleaning with before or after the lady comes.

So that has taken a load off of our minds.

She is also in great health physically. No other meds besides Reminyl and

Wellbutrin.

Gradually over the last year, she has given me her bank card and I make sure

she has a set amount of cash every week. I also pay her bills. She will go

across the road to pick up a few things and once a week my sister or I will take

her for a bigger shopping. She is just now becoming very confused by almost

everything, so we know that there is a bigger change happening. She does her

own laundry and ironing but doesn't like doing them now which is new for her. I

think she is finding the process confusing.

She is very conscious of making mistakes and so only feels comfortable around

my sister and I.

Like you we have always dreaded the thought of a nursing home. However, as

soon as we heard the diagnosis, we looked in our area at several facilities and

have chosen three which we thought were the best so that when we do have to make

that decision we will not have to rush. We have not started any process to get

her in one because as you said she is still too cognizant and aware to put her

in that situation. We both feel that we will take that step only when her

safety and ability to take care of herself are beyond our capabilities and hers

in the present situation. She does not cook, but heats things in the microwave.

We have hired a lady to come once a week for four hours who we have told her

is a volunteer recommended by the doctor. That gives us a little break and is a

new, non-threatening face with whom she can interact.

As you said, the move closer to you will be a big adjustment. My mom moved

four years ago to be closer to us and I really think that her problems started

to become evident to us around that time.

So (just my opinion) I don't think that you have to worry at this time about

24 hour care or NH. It sounds like your mom is coping relatively well. If you

can access community services and maybe get some regular assistance or volunteer

helper, that might help in some aspects. Also I think your one day at a time

approach is the best one to take. We all know what the outcome of this crummy

disease will be but if we try to anticipate what will happen we will not be in

very good shape emotionally, mentally or physically. Making sure that she is

safe is a big priority no matter what decision we make.

I don't know if I really addressed your own situation but I identified with

you when I read your message.

Take Care. Doris Karatoprak from Mississauga Canada

Primary caregiver for mom Ramona aged 77. Originally diagnosed with AD in

Sept. 2004 and then with LBD in March 2005.

wtheri1022@... wrote:

Dann

Your concern regarding 24 hour companionship for my mom sent a wave of

anxiety over me. After months of panic attacks over what is going to happen to

us I

have finally settled into a " one day at a time " approach which has given me

some peace. Maybe I am in denial. The thing about my mom is that aside from this

horrible LBD, which according to the DR she is in an early stage, she is in

very good health for her 83 years. She lives on the top floor of her building

and climbs 15 stairs with a spring in her step. She has no other health issues

and takes no other meds. She gets dressed every day, prepares simple meals,

pays her bills and her place is tidy. She walks to the post office, bank and

corner market. As long as she does these things I feel that she can manage on

her

own with some guidance and help from me. Our goal is to keep her independent

for as long as possible. Certainly there have been changes and I do have to

check in with her daily. Mostly it is her behavior, memory, and thought

processes that are in decline and although that causes stress for her and our

family,

she is harmless to herself and others.

I keep reading the info on when to get help and when to change the living

situation. So far she doesn't fit the profile for 24 hour care. And when she

moves closer to me I can physically check on her every day. Those 15 stairs do

worry me. The new place by me has an elevator.

I dread the thought of placing her somewhere in assisted living or NH. I

think that unless she is completely out of it she will not do well in that kind

of

living. She is too suspicious and paranoid, always has been, to be living in

such close proximity to other people.

I am a little worried about just moving her to the new apt by me. Just

because it will cause her a certain anxiety and will be " different " from what

she is

used to. I just keep telling her and myself that the move is only a week of

inconvenience and we must focus on how great it will be after she is settled in

cuz we will be neighbors!

Maybe I am blowing it? Maybe I am out of touch with reality? Maybe someone

else has a mom in the same stage as mine and can weigh in with their approach.

thanks to everyone

& Mom ginny 83 yrs.

[Guest guest]

Hi Donna and ,

Me again.

My mom is constantly fighting against anything we try to do for or with her

and it gets very tiring. But we persist if we consider it necessary. You learn

to pick your battles.

My mom says she doesn't like this lady coming whom we have hired ( she doesn't

know we pay her). So when she complains about ine coming I tell mom to tell

her that she doesn't have to come anymore. And of course she doesn't so ine

comes and mom always enjoys herself. Putting the choice into their hands gives

them the sense of control I guess.

Another thing I do is I try to phone mom about three times a day. First thing

in the morning, around lunch time and around 8;30 in the evening. My sister

phones her around supper time.

Our doctor only makes her Reminyl prescription for three months so this way we

go in on a regular basis and she is weighed so we can monitor it. She lost

about 10 pounds from May 2005 to May 2006, but since then she has not lost

anything. Maybe it's the cookies.

We have her over for at least one meal a week. She always says she has no

appetite, but when I put the food on her plate she eats every last morsel.

Taking things one day at a time and trying not to be hurt or insulted by

things she says are my mantras these days.

Take care. Doris

Donna Mido wrote:

Doris and ,

I had a Mom very much like yours. She was living on her own and doing her own

stuff. She had put her bills into automatic pay for the most part. And this was

in the early stages. What is interesting as I think back now there is lots of

early stage stuff that I thought nothing about until after.

She would come and live with me for 6 months at a time and then she would have a

big fight with me and want to go home.

Mom lived 12 hours away from me and I know at some point, I started to call

almost every day. I still didn't think much about it and knew she wasn't doing

as well as she had been, but she was healthy and took care of her home and her

self pretty well. After all she was getting older. (This was just preceding her

coming to live with me,

And she talked a good story. I did have a friend of hers call me to say I " had

to do something about " my Mom. I explained she wouldn't come and live with me

and I wondered what she wanted me to do.

So I made my yearly trip up there and she had lost all sorts of weight. (Can't

see that by phone.) Her kitchen floors were filthy and when I said something

about it, she denied it. She explained she scrubbed at least weekly. ( Or

thought she did!) And I asked her when she had eaten last and she said she

always fixed her own dinner. (I found it in the microwave. She had heated it and

I guess forgot to eat it.)

So again she refused to come home with me and I told her I was going to get

someone who could help more than I could at such a distance. She laughed and

just said she would fire them. (She didn't and she really needed them by then.)

And she did have someone close she could call on that fateful day that she

" didn't feel good.)_ The help I hired did come down and took her to the

hospital. I was told the house was full of gas!!!!when they got there.

And it was the MD that said to her, she couldn't live alone any more. She could

go to the nh or come and live with me. I think she chose me because she thought

she had a better chance of getting back to her house.

I tell you this long story, to say things are gradual. And I missed most of it

or tossed it off as, well she is getting older. My favorite was " what could I do

if she refused. " And that was how I felt. I do wish I had understood better. I

really thought she was thinking clear until that last time about a month before

I hired people to stay with her.

The neighbors told me stories afterward. And I know I was much further away than

you are going to be. But this disease is so much easier to look back on and see,

than it is to see what is happening at the time. And my Mom didn't want me to

think for a minute that she was " losing " her mind. So she got real good at

faking it. Or I didn't know how to gently take charge without her knowing. Once

in a while I would try something and when it worked, I was always surprised.

Made her a MD appointment when I was home that summer. She told me she didn't

need to see an MD and she wasn't going. I didn't know what to do or if he would

believe what I was about to tell him. The day of the appointment she said she

wasn't going. I said " fine, since you made the appointment, you call and cancel.

You can't not show up for an appointment. " And she went and got ready to go. I

don't think she could figure out how to call at that point. And she wasn't sure

she hadn't made the appointment. And I

was surprised!

I know this is getting long. This disease is gradual and a day at a time. And

you are doing well that your Mom will move! I think it is important to remember,

there is a disease and it is progressing, no matter how slowly. Don't have to

get anxious and you might need help with her and it is ok to get it. We are here

to support you in whatever you need to do. At some point, you will be thinking

better than she is and you might not know it.

Hugs and Merry Christmas.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Re: Advice from Dann

Hi ,

I don't often send messages, but yours echoes my own situation to a certain

extent.

My mom was diagnosed very early so for almost two years she has been living

independently,in a seniors apartment building about 10 min. drive away from me.

She had a few falls early on, but it has been a long time since she has fallen.

She doesn't have too many hallucinations, at least not that she is telling us.

We are lucky in that in her building, (we are in Mississauga, ontario, canada),

there is a service in which personal care workers monitor her meds, she has life

call (although she very seldom wears the button), she checks in and out with

them when she is leaving her apartment, a cleaning person comes once a week

although mom still does her own cleaning with before or after the lady comes. So

that has taken a load off of our minds.

She is also in great health physically. No other meds besides Reminyl and

Wellbutrin.

Gradually over the last year, she has given me her bank card and I make sure she

has a set amount of cash every week. I also pay her bills. She will go across

the road to pick up a few things and once a week my sister or I will take her

for a bigger shopping. She is just now becoming very confused by almost

everything, so we know that there is a bigger change happening. She does her own

laundry and ironing but doesn't like doing them now which is new for her. I

think she is finding the process confusing.

She is very conscious of making mistakes and so only feels comfortable around my

sister and I.

Like you we have always dreaded the thought of a nursing home. However, as soon

as we heard the diagnosis, we looked in our area at several facilities and have

chosen three which we thought were the best so that when we do have to make that

decision we will not have to rush. We have not started any process to get her in

one because as you said she is still too cognizant and aware to put her in that

situation. We both feel that we will take that step only when her safety and

ability to take care of herself are beyond our capabilities and hers in the

present situation. She does not cook, but heats things in the microwave.

We have hired a lady to come once a week for four hours who we have told her is

a volunteer recommended by the doctor. That gives us a little break and is a

new, non-threatening face with whom she can interact.

As you said, the move closer to you will be a big adjustment. My mom moved four

years ago to be closer to us and I really think that her problems started to

become evident to us around that time.

So (just my opinion) I don't think that you have to worry at this time about 24

hour care or NH. It sounds like your mom is coping relatively well. If you can

access community services and maybe get some regular assistance or volunteer

helper, that might help in some aspects. Also I think your one day at a time

approach is the best one to take. We all know what the outcome of this crummy

disease will be but if we try to anticipate what will happen we will not be in

very good shape emotionally, mentally or physically. Making sure that she is

safe is a big priority no matter what decision we make.

I don't know if I really addressed your own situation but I identified with you

when I read your message.

Take Care. Doris Karatoprak from Mississauga Canada

Primary caregiver for mom Ramona aged 77. Originally diagnosed with AD in Sept.

2004 and then with LBD in March 2005.

wtheri1022@... wrote:

Dann

Your concern regarding 24 hour companionship for my mom sent a wave of

anxiety over me. After months of panic attacks over what is going to happen to

us I

have finally settled into a " one day at a time " approach which has given me

some peace. Maybe I am in denial. The thing about my mom is that aside from this

horrible LBD, which according to the DR she is in an early stage, she is in

very good health for her 83 years. She lives on the top floor of her building

and climbs 15 stairs with a spring in her step. She has no other health issues

and takes no other meds. She gets dressed every day, prepares simple meals,

pays her bills and her place is tidy. She walks to the post office, bank and

corner market. As long as she does these things I feel that she can manage on

her

own with some guidance and help from me. Our goal is to keep her independent

for as long as possible. Certainly there have been changes and I do have to

check in with her daily. Mostly it is her behavior, memory, and thought

processes that are in decline and although that causes stress for her and our

family,

she is harmless to herself and others.

I keep reading the info on when to get help and when to change the living

situation. So far she doesn't fit the profile for 24 hour care. And when she

moves closer to me I can physically check on her every day. Those 15 stairs do

worry me. The new place by me has an elevator.

I dread the thought of placing her somewhere in assisted living or NH. I

think that unless she is completely out of it she will not do well in that kind

of

living. She is too suspicious and paranoid, always has been, to be living in

such close proximity to other people.

I am a little worried about just moving her to the new apt by me. Just

because it will cause her a certain anxiety and will be " different " from what

she is

used to. I just keep telling her and myself that the move is only a week of

inconvenience and we must focus on how great it will be after she is settled in

cuz we will be neighbors!

Maybe I am blowing it? Maybe I am out of touch with reality? Maybe someone

else has a mom in the same stage as mine and can weigh in with their approach.

thanks to everyone

& Mom ginny 83 yrs.