Re: Kath - some suggestions

[Guest guest]

Courage

I really enjoyed your explanation of what life is like in your 'neck of

the woods' and your descriptions were so very detailed, I felt like I

was walking the streets with you.

Sandie

[Guest guest]

Courage,

Can I come to Toronto to play? I've always wanted to visit Hooters and get

kicked out! I haven't even finished reading your post but I'm ready to buy a

plane or train ticket. You make your city sound absolutely beautiful...I'm

putting it top of my list for a visit. Thanks for the tour...now back to

reading more. ;>0

Betty

[Guest guest]

Hi Courage and others:

I tried to write before but am having trouble gathering my thoughts, so bear

with me. When my sister was down a couple of weeks ago she said she wanted

to get a couple of quotes on mom's house. I said I would do it because I

live next door and it made more sense than her travelling from Port Hope.

She said she didn't mind as she knew it would be hard on me. I said no, I

will do it, but give me a couple of weeks and if I haven't then you can come

in and do it. I tend to procrastinate about things that are uncomfortable

for me, but I also wanted a quote on my house as my husband and I have

considered buying her house (it is next door and we use mom's driveway).

On the weekend I had mom over to the house. She wanted to come and

" sort " some things and I felt comfortable with her there, with me next door

in my house checking on her every so often. Before we got there though, I

took her to get her glasses adjusted as she constantly has them sliding down

her nose. I bought her diapers as she said she was running out, and then I

took her grocery shopping. She wanted to pick up cheese. She said she

could keep it at the house and have a cheese sandwich when her sister Joyce

came down. I figured it wouldn't hurt, and it seemed to make her happy. A

state that my mother never seems to be in. Then I left her standing at the

cheese (she was examining every package, despite that I had picked the

cheapest and smallest package I could) and I went up the next aisle. When I

got back to her she was carrying bacon. I said " what's that for? " She said

" I don't know " and burst into tears. Obviously she was missing shopping and

picking out things for herself. She has no fridge in the lodge and they

cook all her meals. She put the bacon in the buggy. I left it there. I

felt so bad for her. I know she wants to come home, she thinks she is

perfectly fine. She doesn't see what I see.

While she was here (there) she visited with neighbours across the street.

The neighbour said " we'll have to find you someone to come in your house and

take care of you " . Mom has been telling me she doesn't want to spend the

rest of her life in Central Park Lodge (CPL) and has already looked at homes

in near my brother and Port Hope near my sister. She said to my

sister that it was perfect except it wasn't in Toronto. So I decided to

take her to some others in Toronto in the hopes that I might find one

cheaper, and with more space that she would be happy with, and one that she

would be close to me (I have lived beside her for 20 years). I visited one

place in Pickering (just outside Toronto) and it smelled like urine. I did

not take mom to see it. I made arrangements for another on Sunday and told

mom about it on Saturday when she was at the house. After having asked me

to find somewhere else, she says " aww no. Why do I have to look at other

places. I just want to go home. She started to cry, I started to cry

saying " I am doing the best that I can. You complain to me all the time and

I spent hours trying to find a place, I call them and set up a time on the

weekend (which takes me away from my family and the only free time I have,

and now you don't want to go? " I told her that I can't quit my job and in

the end she told me that she knew I had done alot and she appreciated what I

had done. She stayed for dinner and went back in for another hour or so and

then I took her back.When I went in to take her back, she was stalling,

looking around, and saying things like " I want to leave that so that when I

come back tomorrow, I can sew it with the sewing machine " . I just hussled

her out the door as I wanted to come back and spend time with my husband. I

never said I was taking her to the house on Sunday at any point but I saw no

reason to argue the point.

On Sunday, mom phoned me and asked when I was coming to get her. I told her

I wasn't planning on coming until 3 pm as the tour wasn't until 3:30. She

said " aren't you going to come and get me? I thought I was going to have

time at the house. She cried and told me she wants to come home. I said I

would come and bring her to the house and then I would take her for the

tour. I said " call me when you are ready and I will meet you at the door to

the lodge. The elevators take forever and the SARS routine of signing in

and out could be avoided if I don't enter. It was 11:00 am. I called her

back at 11:40 am. She still was not ready. I thought she had just forgot

to phone me. She said she has to go the bathroom first. I said call me

when you are ready. At 12:10 I called again. Are you ready? no. I don't

believe it. All she had to do was put on her coat and wheel her walker

downstairs. Sigh. Okay, I am leaving now. Go downstairs and wait for me

outside. I waited another 10 minutes, drove the 10 minutes it takes to get

there and then parked as I didn't see her. I went inside did the SARS

thing, took the elevator to the 7th floor and when it opened there she was!

We got back on and I brought her here. She said she was hungry in the car

so I told her I would make her lunch. I asked if she wanted me to make it

and she could eat in her house or mine. She said she would come in mine.

Then she wanted cheese (from her house). I sent my son to get it. She had

put it in the freezer. It was pre-sliced so we had to thaw it out but were

still able to use it. She ate and then went in her house. It was now 1:30

pm. I told her we needed to leave by 2:45pm. I folded some laundry and

cleaned my house a bit and it was 2:55pm. I quickly went in to my mom's to

get her moving and on the way a neighbour asked me for a boost for his car.

I told mom to get on her coat, that we had to leave right away and that I

was helping a neighbour and would be right back.

We got his car started and in I go to get mom. I put her coat on and

practically pull her out the door. All the while she is saying " why do we

have to look, they are all the same " . The tour began with the lady saying

" oh no.. " when I told her we were there for the tour. I said " well I called

and you told me 3:30.. " She said she knew but it seemed a particularly bad

day. She was the only one there (except the nurse) and was doing everything

for everyone. It was small, and not so new, and not as many people but the

woman giving the tour had no idea of prices and mom clearly showed her " lack

of interest " repeating " yeah, they pretty much all have that " .

I took her back at the end of the tour. She again said she just wanted to

go home and why wont I help her. I dropped her off and went home. I cried

all the way. No, I wailed and sobbed all the way home. It was 4:45 when I

got home and I was exhausted. When I got in my mother had already called to

tell me she had lost her wallet (which she gave to me the day before so she

didn't have to carry her purse from the car. She wouldn't leave it in the

lodge as she is sure people are going through her things). I phoned her and

told her that I would bring it up in the morning. I had a " strong " drink

and Steve ordered Chinese food for dinner.

Monday was a write off. I had computer problems with my daughter and had to

take her to work to print something. We left the house both in tears. I

dropped her at school at 10:30 am. I then went to my doctor (I had left a

form for disability tax credit there. He said he needed to see mom before

filling it out. He also said I could take it to the lodge and have the

doctor fill it it there if that was better. I asked mom and she said, no,

just bring it back and we'll get it filled out here.) I brought the form

back to take to the lodge along with her wallet. I decided that I was out

of time, and had to go to work for 11:30 and that I would drop it off in the

afternoon.

I then went to work to try and prepare for our board meeting for the

daycare. An important one as we were discussing salary reviews and fee

increases for the parents. Mom called the daycare during the kid's lunch and

apologized for the day before. I said I was also sorry, that I didn't have

much patience and to forget about it. I dropped off the wallet and form at

1:30 pm and I took her a potted Mum to cheer her up. When I gave her the

form and told her she would have to ask the nurse to ask the doctor to fill

in the form she asked me why she couldn't just go to Dr. Rockman (the guy I

just picked the form up from that morning). I said no way. I told her what

she had said and she said she gets mixed up sometimes when she is stressed.

I said the doctor here will fill it out or he wont. But I am not taking it

back to Dr. Rockman. Then I kissed her and left. I didn't get home until 9

pm that night. My sister had called and left me a message. I couldn't bear

the thought of calling her back as I thought she was going to ask me about

getting the quote. Instead I thought I would wait and call her the next

day.

The next day I had to take my daughter to the dentist at 8:30 and then

drive her to school. Her school is a half an hour away. I got home, and

there was another message from my sister. I called her and she told me how

mom had called her the day before and was screaming at her. My sister was

sick and she said mom just kept yelling " why don't yous do something, why

can't I come home, I took care of my mother (she took her out every

saturday, took her to the cottage and phoned her every day, but she didn't

live with her), why can't you take care of me? "

After hearing about the place I had shown her, and all the complaining mom

was doing about me rushing her out of the house etc. Sharon lost it. She

told her she was selfish, that she was always selfish and didn't she see

what she was doing to me, and how it was unfair to expect us to give up our

lives and then she told mom to just go home then. So she was calling to

tell me that, in case mom showed up in a cab.

In the meantime I had called to make arrangements to have a guy come and

give us a quote. We were to meet at mom's at 7 pm. At 6:45 I get a call

from mom. She says she wants some carrot cake (she bought it on Saturday)

and wants me to bring it in to her. I said " WHAT? " She says she wants the

cake and could I bring it in next door. I said " how did you get next door? "

She says " I don't know I came here this morning " . She says she'll meet me

at the front door. I am having a breakdown. I can't believe that this is

happening. I am going to the front door and my husband pulls in the

driveway. I go past him and say " if the real estate guy comes you are going

to have to take him to our house. I go in and find an empty house. I put

my heart and stomach back in my body and walk back out the door. Steve

calls my mother and talks to her and tells her I will bring it the next time

I come. She is hallucinating.

I have been trying to figure out a solution to all of this for a while. I

can't see my mother living by herself in that house. It fell apart last

August and I know it has no chance of success as I am pretty clear on the

advancement of the disease. I tried my very best to accustom her to the

lodge, helping her make friends, getting to know the staff, the programs and

trying to get her to attend trips and activities. I have looked up drugs,

found this group (a godsend) and have taken her to a multitude of doctor's

appointments. . I have taken her to a orthopedic specialist when she hurt

her arm, an internal medicine guy, got her a CT scan, taken her to the

Geriatric Assessment Program where she saw Dr. Ferguson. He sent her to a

geriatrician, she said she needed to see a uro-gynocologist. I took her to

see a urologist at the hospital that the lodge doctor sent her to. She went

by ambulance and by the time he saw her, there wasn't time to do the test

(which takes 10 minutes, but the ambulance wouldn't wait, so we rescheduled

and I took her back the next week. My sister took her to a gynocologist the

lodge doctor sent her to.I took her to the gynocologist that the

geriatrician sent her to. I took her to the eye specialist, I took her to

the eye specialist that the first eye specialist sent her to so she could

have cataract and glaucoma surgery. I took her to the surgery. I got her

the extra care she needed when she started hallucinating after the surgery.

I helped her through that recovery. I got her to the dentist so she could

have new dentures. My uncle took her to have adjustments made. I was taking

her every month to have B-12 shots at the doctors but I have the lodge nurse

doing that now. I have lost hours and hours of work and time with my

family. I did it so she could be happy and begin to enjoy her life. So she

wouldn't be lonely, fall down the stairs and lie there for hours or days,

not be afraid that someone would break in, that no one would take advantage

of her by taking her money, that she wouldn't get her medicine mixed up and

get sick. I did all I could. I made myself sick with worry and stress. And

I can't think of anything else but how unhappy she is and that it is my

fault. Because I wont agree with her to come home. The geriatric

psychiatrist suggested a trial at home back in Dec. It made me feel sick.

Because if I let her come home, it is me who is fully responsible as I live

next door. I was waking her up and she was miserable to me, I was giving her

meds and eyedrops and the whole proceedure took about an hour but she would

keep me there even longer asking me to help her with this or that. She would

come over to our house constantly (because she was lonely) and let herself

in with her key to our house (so we really had no privacy) and she would

come everyday when the kids got home from school (I think because she was

lonely). I got help for her to come in a couple of days a week but she

wouldn't let the person come regularly and would send her home early and

would complain about the cost. I stopped grocery shopping with her as I was

going out of my mind to waste 3 hours shopping with her. I cannot see my

mother coming home unless she has someone there. The only thing I can think

to do is to buy her house, and have her live with us. I can't stand

smoking and she smokes. She hasn't smoked for 3 weeks and the last two days

she has began taking a " couple of puffs " . My mother is extremely self

centred and hard to get along with. There is no bathroom on the main floor,

but the house is large and a bathroom could be installed for about 10 grand.

If she lives with us I don't separate myself from my family, it wouldn't

cost as much to have care and mom would be in our neighbourhood. She could

work in yard, help with dinner and have company. The only thing is I give up

my freedom. I have to have someone that is dependent on me. I go to my

trailer on weekends and for the month of July. I can't expect my husband to

work and then come home and take care of my mother and I don't want to bring

her to the trailer because it is too small and I would have to constantly be

with her. I have done it for a week but could not do it every weekend or

while I am supposted to be on holidays. I don't have power of attorney. My

aunt has it and she lives north of the city in Stoufville. She comes down

about once a week. I think she stays for about 2 hours but she wont drive

in bad weather and her husband has sciatica right now so she hasnt been

coming as often. She doesn't seem to accept that my mother's condition will

worsen as she sees the fluctuation as my mother getting better.

I have to go to work so I will finish my story later. It is too long anyway.

(to be continued)

Kath

LBD-Courage re seminars

> >>

> >>

> >> >Dear Courage -

> >> >

> >> >My sister was in town last week and I stupidly

> >> >eliminated the e-mail you sent regarding speaking

> >> >publicly to groups with regards to LBD.

> >> >

> >> >If you could forward the e-mail again. I'm not sure I

> >> >could handle it (mentally or physically) but I would

> >> >be interested in helping out.

> >> >

> >> >Thanks so much.

> >> >

> >> >Barbara

> >> >

> >> >______________________________________________________________________

> >> >Post your free ad now! http://personals.yahoo.ca

> >> >

> >> >

> >> >

[Guest guest]

thanks Courage for the distraction. I enjoyed the tour and thought that

maybe you might like to do it together sometime.

Kath

Re: Kath - some suggestions

> Courage

> I really enjoyed your explanation of what life is like in your 'neck of

> the woods' and your descriptions were so very detailed, I felt like I

> was walking the streets with you.

> Sandie

>

>

>

>

[Guest guest]

Kath,

Am anxiously awaiting the continued story. I almost feel guilty saying that

when I get to having myself a little pity party, I am jolted back to reality

by those such as you and a situation which sounds so frustrating. Your

venting has helped me appreciate some of the blessings that I have and

hopefully, you feel some sense of relief by sharing. Please continue to do

so. When I get that ticket to Toronto, I have a special hug reserved just

for you.

Love & Prayers

Betty

[Guest guest]

Kath

Oh dear you have explained what I used to go through. The constant

caregiving for your mom when you have a married life that also needs

attention. You will make it through this. I did.

I am a survivor of a loved one with LBD. I refused to let the disease

take me with it. Of course, I had my melt downs but wasn't down for

long. My prayers of courage, wisdom, and strength are with you!

Hugging you with my heart.

Sandie

Des Moines, IA

[Guest guest]

Kath,

It broke my hear to read about all that you have done - on your own. I

can't help but feel that it is now time for your siblings to take over. You

have lived next to your mom for 20 years and I'm sure that even when she

wasn't ill that you made sure she was taken care of. I was amazed at all

that you have done for her and I tip my hat to you. It's no wonder that you

are stress.

Please discuss the idea of having your mother moved to your brothers/sisters

neighbourhood serously and please don't feel guilty about it. You have gone

BEYOND the call of duty and it has cost you dearly. You are entitled to

have a life!

Your siblings are going to have to pitch in and I think that the best thing

for everyone involved would be for her to move to them. I don't think it's

selfish at all. what I do think is that your siblings did not help you -

not that's selfish. If your mom goes to live near them then you can reclaim

your life and your visits with her will be pleasent once more.

Just a suggestion...but I really want you to consider it. Great big hug for

you and if I could I'd sent you all the yummy food I discribed earlier.

Courage

Re: Kath - some suggestions

>thanks Courage for the distraction. I enjoyed the tour and thought that

>maybe you might like to do it together sometime.

>Kath

> Re: Kath - some suggestions

>

>

>> Courage

>> I really enjoyed your explanation of what life is like in your 'neck of

>> the woods' and your descriptions were so very detailed, I felt like I

>> was walking the streets with you.

>> Sandie

>>

>>

>>

>>

[Guest guest]

Hi Betty,

Anytime you're ready to come to TO let me know. In fact, I think we should

set up a holiday for all caregivers. What a sight we'll be, 300 of us

running through the streets eating flans! hhahahahhahahahahahahhahah

Courage

Re: Kath - some suggestions

>Courage,

>

>Can I come to Toronto to play? I've always wanted to visit Hooters and get

>kicked out! I haven't even finished reading your post but I'm ready to buy

a

>plane or train ticket. You make your city sound absolutely beautiful...I'm

>putting it top of my list for a visit. Thanks for the tour...now back to

>reading more. ;>0

>

>Betty

>

>

>

[Guest guest]

Thank you Sandie. I know what doesn't kill me will make me stronger. :-)

Kath

Re: Kath - some suggestions

> Kath

> Oh dear you have explained what I used to go through. The constant

> caregiving for your mom when you have a married life that also needs

> attention. You will make it through this. I did.

> I am a survivor of a loved one with LBD. I refused to let the disease

> take me with it. Of course, I had my melt downs but wasn't down for

> long. My prayers of courage, wisdom, and strength are with you!

> Hugging you with my heart.

> Sandie

> Des Moines, IA

>

>

>

>

[Guest guest]

Thank you Betty. I needed the hugs and to talk. It did help to vent.

Sometimes I have so much to say to really make people understand. You know

all of that happened since end of August. Boy it wasn't until I wrote it

down until I realized just how much I had done. I know I was tired but now

I know why!

I am in much better spirits tonight.

Kath

Re: Kath - some suggestions

> Kath,

>

> Am anxiously awaiting the continued story. I almost feel guilty saying

that

> when I get to having myself a little pity party, I am jolted back to

reality

> by those such as you and a situation which sounds so frustrating. Your

> venting has helped me appreciate some of the blessings that I have and

> hopefully, you feel some sense of relief by sharing. Please continue to

do

> so. When I get that ticket to Toronto, I have a special hug reserved just

> for you.

>

> Love & Prayers

> Betty

>

>

>

[Guest guest]

Courage writes: It's no wonder that you are stress.

Teehee. That's me. If you are Courage, then I am

Sincerely,

Stress (a.k.a. Kath)

(okay I am laughing now)

Re: Kath - some suggestions

> >

> >

> >> Courage

> >> I really enjoyed your explanation of what life is like in your 'neck of

> >> the woods' and your descriptions were so very detailed, I felt like I

> >> was walking the streets with you.

> >> Sandie

> >>

> >>

> >>

> >>