Your Dad, My Mom

[Guest guest]

Hi Susie,

Thanks for writing and it is nice to meet you also; except that it's

too bad it has to be like this.

I think we are probably lucky so far that they are able to be at

home. I have learned not to compare one to another or to look and

worry too far down the line. It can be just too much. Sometimes

though, it's easier said than done...as I'm sure you know.

My Mom will be 79 on Nov 14...my Dad died in Sept of 06 and she went

on a decline since then. The first few years they said it was multi-

infarct strokes. Further testing and a hospitalization and they

started talking about ALZ...Just recently we are talking Dementia

with LB...which is the way the Doctor DX it. I am 99% sure it is

LBD. I had this list of signs and symptoms, etc...I think there were

25 things listed and she was positive for 22..not just from that, but

putting everything together...

Anyway, Mom lives alone in a very small 1 bedroom in a senior high

rise...she hates elevators, so she won't use it...so, that's a

blessing. There is myself and 2 sisters. I am the main caretaker.

The other two try to get down at least once a week. They live out of

state. Just a little over an hour, not too bad. I am 45 mins

away...I go and sleep over and do all the doctors and pills and

shopping and whatever else that has to be done...money, bills, etc.

She has a cleaning person and a bath person that she loves. It's

not easy getting her in to take a bath. She always seems to have an

excuse but then feels better after. I do her pills in individual

daily cases and call her several times a day to remind her to take

them. She has several other medical problems...Diabetes, CHF,

vascular disease with legs, atrial Fibrillation, macular

degeneration..and to look at her and lots of time to talk to her if

you didn't know her...she looks wonderful...especially when I have

her all dressed up and have her hair permed. It's a job to get her

to the beauty parlor but I manage at least twice a year...

But, her memory and cognitive ability is short. She has NO short

term memory and the long term memory is not that great recently

either. She is very verbal and can be very stubborn and sometimes

say nasty things, unlike my Mom. She has no interest in most

things. The only thing that really excites her is my baby sister (50

YO) and her husband. She stilll thinks she is the baby I guess. I am

the oldest.

She has no concept of time or days. I could go every day and five

minutes after I leave she will tell someone she hasn't seen me in

days.

She has a constant obsession with the bowels and worrying.

Her is the kicker. In the past 6 months, I would say, her legs are

getting weaker and weaker. The Doctors tell her to try to keep

walking and moving. She had been joking that people were going to

think she was drunk. I have to hold her; she refuses a walker, can't

even figure out how to do the foot work, so that wouldn't work,

anyway. She holds on as she walks and goes slow. Thank God, so far

she has not fallen; except this past November she went over from her

recliner as she was trying to " swoosh " away a cat from near the

TV..She has no cat. She did hurt her leg but nothing serious.

Well, I have rambled on quite a big Susie, if I can give you any

other info please feel free to ask...hope things are going

well...it's so tough...

My best,

Diane/Boston

[Guest guest]

Susie,

My Dad died in Sept of 00...sorry, about that...it's been a little

over six years...

>

> Hi Susie,

> Thanks for writing and it is nice to meet you also; except that

it's

> too bad it has to be like this.

> I think we are probably lucky so far that they are able to be at

> home. I have learned not to compare one to another or to look and

> worry too far down the line. It can be just too much. Sometimes

> though, it's easier said than done...as I'm sure you know.

> My Mom will be 79 on Nov 14...my Dad died in Sept of 06 and she

went

> on a decline since then. The first few years they said it was

multi-

> infarct strokes. Further testing and a hospitalization and they

> started talking about ALZ...Just recently we are talking Dementia

> with LB...which is the way the Doctor DX it. I am 99% sure it is

> LBD. I had this list of signs and symptoms, etc...I think there

were

> 25 things listed and she was positive for 22..not just from that,

but

> putting everything together...

> Anyway, Mom lives alone in a very small 1 bedroom in a senior high

> rise...she hates elevators, so she won't use it...so, that's a

> blessing. There is myself and 2 sisters. I am the main

caretaker.

> The other two try to get down at least once a week. They live out

of

> state. Just a little over an hour, not too bad. I am 45 mins

> away...I go and sleep over and do all the doctors and pills and

> shopping and whatever else that has to be done...money, bills, etc.

> She has a cleaning person and a bath person that she loves. It's

> not easy getting her in to take a bath. She always seems to have

an

> excuse but then feels better after. I do her pills in individual

> daily cases and call her several times a day to remind her to take

> them. She has several other medical problems...Diabetes, CHF,

> vascular disease with legs, atrial Fibrillation, macular

> degeneration..and to look at her and lots of time to talk to her if

> you didn't know her...she looks wonderful...especially when I have

> her all dressed up and have her hair permed. It's a job to get her

> to the beauty parlor but I manage at least twice a year...

> But, her memory and cognitive ability is short. She has NO short

> term memory and the long term memory is not that great recently

> either. She is very verbal and can be very stubborn and sometimes

> say nasty things, unlike my Mom. She has no interest in most

> things. The only thing that really excites her is my baby sister

(50

> YO) and her husband. She stilll thinks she is the baby I guess. I

am

> the oldest.

> She has no concept of time or days. I could go every day and five

> minutes after I leave she will tell someone she hasn't seen me in

> days.

> She has a constant obsession with the bowels and worrying.

> Her is the kicker. In the past 6 months, I would say, her legs are

> getting weaker and weaker. The Doctors tell her to try to keep

> walking and moving. She had been joking that people were going to

> think she was drunk. I have to hold her; she refuses a walker,

can't

> even figure out how to do the foot work, so that wouldn't work,

> anyway. She holds on as she walks and goes slow. Thank God, so

far

> she has not fallen; except this past November she went over from

her

> recliner as she was trying to " swoosh " away a cat from near the

> TV..She has no cat. She did hurt her leg but nothing serious.

>

> Well, I have rambled on quite a big Susie, if I can give you any

> other info please feel free to ask...hope things are going

> well...it's so tough...

>

> My best,

> Diane/Boston

>

[Guest guest]

Both my parents died in Sept. Daddy 1977, and mama 1999

Imogene

In a message dated 10/14/2006 1:12:54 AM Central Daylight Time,

diane.hillboston@... writes:

Susie,

My Dad died in Sept of 00...sorry, about that...it's been a little

over six years...

[Guest guest]

Hi Diane,

I hope you don't think I'm stalking you, but I think you were on the

LBD website that Irene runs.

Anyway, I read your story below and you seem like a caring daughter.

I was wondering how you deal with the " mean " things your Mom says to

you. I really need to vent, and I think I was using the LBD site for

that, and it's really for medical info. I need to rant and rave for

awhile.

I think I told you that my husband and I have changed our entire

lives to care for my Mom. We were " empty nesters " , kids raised,

coming and going as we pleased. Now we have rented out our house,

moved in with her, changed shifts at work to be sure one of us is

home most of the day. She has a caregiver the rest of the time.

There are 6 children and step children and only my husband and I

have been the ones to " step up " to care for her since our Dad died.

None of the other kids even come to visit. The step kids have not

been to see her since Dad died in March. My brother (her son) lives

in the same small town, and he never comes to see her. I am starting

to feel really isolated. Also hurt, first because my Mom is a really

sweet lady. Always has been. Secondly, because I really thought

everyone was close and this has proven to be an incorrect assumption

on my part. Another thing is that we live in a very small community,

and have run into my brother and his girlfriend twice in the last 5

or 6 weeks. You would have thought he was the Pope or the President

or some other awe inspiring person. Every day I dress her, help her

eat, bath her, wipe her bottom and most importantly, LOVE her.

Suddenly I am unimportant. She wants HIM to push the wheelchair,

HIM to help her to the car , HIM to sit next to her. As my Mom

would say, " it just chaps my hide " I know this sound childish and

petty. And normally I would be very, very grateful for any help I

could get. But, what is bothering me is that somewhere in her very

confused and demented mind, she can remember him, cares more for

him. I feel that everything we do for her is insignificant in

comparison to his just BEING. She forget who I am, but never forgets

him. What's with that?

How does your Mom relate to the siblings who don't do all the work

taking care of her? Does she seem to prefer one child over another?

My husband keeps saying not to take it personally, " she's not

herself " . And I know that. Just because I understand, doesn't mean

my feelings don't get hurt.

Wow, I feel better!!!!

Thanks,

Sallyann

> >

> > Hi Susie,

> > Thanks for writing and it is nice to meet you also; except that

> it's

> > too bad it has to be like this.

> > I think we are probably lucky so far that they are able to be at

> > home. I have learned not to compare one to another or to look

and

> > worry too far down the line. It can be just too much.

Sometimes

> > though, it's easier said than done...as I'm sure you know.

> > My Mom will be 79 on Nov 14...my Dad died in Sept of 06 and she

> went

> > on a decline since then. The first few years they said it was

> multi-

> > infarct strokes. Further testing and a hospitalization and they

> > started talking about ALZ...Just recently we are talking

Dementia

> > with LB...which is the way the Doctor DX it. I am 99% sure it

is

> > LBD. I had this list of signs and symptoms, etc...I think there

> were

> > 25 things listed and she was positive for 22..not just from

that,

> but

> > putting everything together...

> > Anyway, Mom lives alone in a very small 1 bedroom in a senior

high

> > rise...she hates elevators, so she won't use it...so, that's a

> > blessing. There is myself and 2 sisters. I am the main

> caretaker.

> > The other two try to get down at least once a week. They live

out

> of

> > state. Just a little over an hour, not too bad. I am 45 mins

> > away...I go and sleep over and do all the doctors and pills and

> > shopping and whatever else that has to be done...money, bills,

etc.

> > She has a cleaning person and a bath person that she loves.

It's

> > not easy getting her in to take a bath. She always seems to

have

> an

> > excuse but then feels better after. I do her pills in

individual

> > daily cases and call her several times a day to remind her to

take

> > them. She has several other medical problems...Diabetes, CHF,

> > vascular disease with legs, atrial Fibrillation, macular

> > degeneration..and to look at her and lots of time to talk to her

if

> > you didn't know her...she looks wonderful...especially when I

have

> > her all dressed up and have her hair permed. It's a job to get

her

> > to the beauty parlor but I manage at least twice a year...

> > But, her memory and cognitive ability is short. She has NO

short

> > term memory and the long term memory is not that great recently

> > either. She is very verbal and can be very stubborn and

sometimes

> > say nasty things, unlike my Mom. She has no interest in most

> > things. The only thing that really excites her is my baby

sister

> (50

> > YO) and her husband. She stilll thinks she is the baby I guess.

I

> am

> > the oldest.

> > She has no concept of time or days. I could go every day and

five

> > minutes after I leave she will tell someone she hasn't seen me

in

> > days.

> > She has a constant obsession with the bowels and worrying.

> > Her is the kicker. In the past 6 months, I would say, her legs

are

> > getting weaker and weaker. The Doctors tell her to try to keep

> > walking and moving. She had been joking that people were going

to

> > think she was drunk. I have to hold her; she refuses a walker,

> can't

> > even figure out how to do the foot work, so that wouldn't work,

> > anyway. She holds on as she walks and goes slow. Thank God, so

> far

> > she has not fallen; except this past November she went over from

> her

> > recliner as she was trying to " swoosh " away a cat from near the

> > TV..She has no cat. She did hurt her leg but nothing serious.

> >

> > Well, I have rambled on quite a big Susie, if I can give you any

> > other info please feel free to ask...hope things are going

> > well...it's so tough...

> >

> > My best,

> > Diane/Boston

> >

>

[Guest guest]

Sallyann

I walked in your shoes for 3 yrs. However, I was on my own. No help but me.

I have 2 brothers that wouldn't change their lifestyle for anyone. My older

brother would contribute money and the younger one just didn't care.

Anyway, Mom was like your Mom. She would talk about the brothers like they

were Gods and I was the slave. But that is part of the disease. Our LO's feel

safe with us and they can let go of all their feelings. Anger, confusion,

fear, hallucinations, and many more. They don't have to be on their guard with

us. HURT, you bet it hurts, after all we are human. And we know that it is the

disease talking but it still hurts. That is what this group is all about.

Its a place where you can let your hair down and no one will think badly of

you. We have all been there.

You are doing a good job and your Mom knows that somewhere in her confused

mind. So keep your chin up and be ready to take the next knock on it. Please

always feel free the vent here.

Cyber Hugs from So Florida

Jacqui

[Guest guest]

Hi Sally,

I just wanted to jump in and tell you that LBD put your father in a NH and not

you. You placed him in care so that he can be taken care of 24/7 and be safe.

I know just how you feel because I felt the same way when we placed mom 3 years

ago and just recently we placed dad - they live together again. Even though our

brains tell us we are doing the right thing we can't help but feel sad as things

will never be the same and perhaps even some guilt that we have placed them.

However, just imagine how much more guilty or distressed you would feel if your

dad hurt himself when he was home alone? At least at the NH there are people

around to keep an eye on him and life goes on there - a thing I think we miss

when we discuss NH care. When mom and dad were home there was very little to do

and no interaction with the outside world and people.

I also hear you about family. My mother put such a premium on males in the

family and yet her 3 sons barely came to visit or help and still don't. My

parents still make a bigger fuss when the boys come around and my dad wouldn't

dare complain to them!!! Go figure. Yesterday at dinner with my parents at the

NH my father really gave it to my sister, telling her that she took his license

away, his car, his home. I asked her to please ignore him but it still hurt her

so much. Try to hang in there and I think that you and your husband are

wonderful people for making all these changes in your lives to care for your

mom.

Courage