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Ron, I had wondered why you were home when you had siblings. But, through

time, I have learned that you are a CNA and still earning enough to sustain

you, and can care for your Mom at the same time. That is exactly what your

siblings are seeing. They are seeing their mother being cared for by a

qualified

person, and that eases their burden, while not thinking for a minute that you

also need help.

Ron, I am so sorry. You will have to put your foot down with your siblings.

Everyone gets time off from work, and work around the clock is what you are

doing. Without that time off you will break. You need refreshing time for you.

Totally away from this responsibility for a couple of days a week. Also,

some way, you Mom could use something to help her sleep, so you can sleep. NO

one can continue the way you are and not burnout.

Fire your Doctor, and get another that understands your problem. When you

are about to crumble you don't need scolding. You need help.

Now, if it sounds like I am scolding, I am not. I love you Ron, and felt

terrible about your burden.

This is what I am facing. But, right now my Man sleeps.

Ron, I am so terribly sorry. You need to cry on someone's shoulder, that

understands. Believe me we do. We are here for you. I am glad you wrote.

Please keep us posted on your situation. I really worry for you.

Love so much,

Imogene

In a message dated 10/15/2007 3:30:19 PM Central Daylight Time,

dawgg4456@... writes:

Hi everyone.Went back to the doctor today for myself because Im not having

much luck at feeling better.Wanted to discuss staying tired,

forgetting,dramatic weight gain and loss and basically I guess I was hoping

that I could treat

some of this with medication of some sort.My big thing is I dont want to get

sick and not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and

prevacid for stomache woes.So Im thinking we will treat these new symtoims and

go

from there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I have

my list of what to talk to the dr about and I read it off to her and she

instantly goes into a long tyrade of me not taking care of myself.So I try to

explain to her that Im a 24 hour caregiver and it just basically gets worse.We

never did see eye to eye and I got nothing to help me with my problems so

basically I just got more stress from being so irate at the lack of

understanding I get in my life.So Im laying it out to anyone hear that will

listen.And i

respect oppinions and reeally would like to know if Im wrong and if I really

can change my situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there

is a million things Id like to do but If the help isnt there then I cant

change that.

3.I really feel like if it isnt me doin this then mom is screwed and in a

nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of

my siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all

this and keep me from getting sick and instead Im feeling like Im wrong for

being this way AND I got absolutely no help today at all to deal with the

memory, sleep, fatigue, and weight fluxuations.Can someone just tell me how the

hell I am supposed to change my lifestyle doing this?If I could wake the hell

up in the morning and be a famous rock star I would but Im ron and I take

care of my mom and everytime I ask for help I get advice that just doesnt even

apply to my life.

************************************** See what's new at http://www.aol.com

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Hi, Ron,

I would really like to pinch your doctor's head off at the moment. I am

sure she means well, but she definitely doesn't get it. Most doctors have no

idea what caregiving really is - especially 24/7. I had many of the same

feeling you are having now when I was taking care of my dad. I didn't want to

put

Dad's care in the hands of strangers either. I tried having a few people,

and Dad didn't respond very well to anyone but me. I have siblings, too, and

mine were about as much help as yours are. I would ask for help, and both of

them would always have some excuse or pitch a fit, so I stopped asking. You

are right - if the help isn't there, it just isn't there. As Dad got

progressively worse, my mother was always trying to put Dad in a nursing home,

and

that was always uncomfortable. I had power of attorney for my dad so my

mother was not in charge of making decisions for him. I know, it all sounds

strange - it was strange. My dad and I had always been really close, and I

guess

he knew who he wanted making decisions on his behalf. I felt like you do,

that I had my reasons for doing what I was doing, and it just wasn't worth

explaining anything to anyone because they wouldn't understand it anyway. It

was

between my dad and I, and that is all that mattered - just like it is between

you and your mom. I wish I had some great advice to give you. I don't have

a lot of advice, but I have a tremendous amount of understanding. I

eventually did find a lady to who my dad responded well. She would come two

afternoons per week for a few hours and be with my dad. I wouldn't leave the

house,

but it would give me some time to do my work or whatever else I could do -

maybe even rest. This lady couldn't do any heavy lifting with my dad, but he

liked being with her. I would be home to do anything that was physical if he

needed it. Would your siblings that won't help with your mom's care be

willing to pitch in towards hiring a small amount of outside help to give you a

break? You could still be home so you would know what was going on with your

mom, but you wouldn't have to be totally with her during that time. I gained

weight when I was taking care of my dad, too. Comfort food did just that for

me - it comforted me. Don't worry too much about the weight gain. You will

straighten that out in time. I just know it is near impossible to " take care

of yourself " when you are caring for someone 24/7. We know we are supposed

to take care of ourselves, but we can just do what we can do for ourselves.

I do know that you will be really glad that you took care of your mom, and

you will never regret it. I am going to stop rambling now. I just wish you

weren't having to go through what you are going through. Please come here and

rant whenever you need to. We are here for you.

Big hugs,

Piper

************************************** See what's new at http://www.aol.com

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Ron, where to start!

I found looking after my granda was very much like taking care of my children

when they were babies. when i was cooking for my granda i made sure i ate too,

when he slept i would maybe nap too. don't get bogged down in household chores.

a house is always standing when your not. I know it can sound simplistic and

it's not. We become consumed with the job we have to do wtth our LO's and

sometimes it's at the expense of our own health. People will say 'don't worry so

much' but we do, we project into the future and think that we don't have our LO

for a very long time so we'll go all out to do everything we can to make sure

their remaining years/months are comfortable and not spent with strangers.

Everyones situation is unique. The only suggesion i have is to ask yourself, if

you saw someone you cared about in the exact situation your in..what would your

advice be to them. Would you tell them to slow down and look after themselves?

Probably but the short of it is that we all do what we feel we have to to get by

each day. Your not wrong for feeling the way you do or getting sick. Your only

human. Keep coming here. I know it's not the same as having a face to face with

another caregiver or getting some time to chill but we're open 24/7 365 days a

year. We never close.

Take care

.xx

sorry off topic, (just need to vent a little)

Hi everyone.Went back to the doctor today for myself because Im not having

much luck at feeling better.Wanted to discuss staying tired, forgetting,dramatic

weight gain and loss and basically I guess I was hoping that I could treat some

of this with medication of some sort.My big thing is I dont want to get sick and

not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and

prevacid for stomache woes.So Im thinking we will treat these new symtoims and

go from there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I have my

list of what to talk to the dr about and I read it off to her and she instantly

goes into a long tyrade of me not taking care of myself.So I try to explain to

her that Im a 24 hour caregiver and it just basically gets worse.We never did

see eye to eye and I got nothing to help me with my problems so basically I just

got more stress from being so irate at the lack of understanding I get in my

life.So Im laying it out to anyone hear that will listen.And i respect oppinions

and reeally would like to know if Im wrong and if I really can change my

situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there is

a million things Id like to do but If the help isnt there then I cant change

that.

3.I really feel like if it isnt me doin this then mom is screwed and in a nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of my

siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all

this and keep me from getting sick and instead Im feeling like Im wrong for

being this way AND I got absolutely no help today at all to deal with the

memory, sleep, fatigue, and weight fluxuations.Can someone just tell me how the

hell I am supposed to change my lifestyle doing this?If I could wake the hell up

in the morning and be a famous rock star I would but Im ron and I take care of

my mom and everytime I ask for help I get advice that just doesnt even apply to

my life.

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

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Dear Ron,

OMG, I am so sorry to hear all of this. I have experienced something similar

to this but not quite. I have had depression and anxiety problems since my

mid-twenties, I'm 46 now. Anyway, when I first went down and brought mom up here

from FL I put her in assisted living and later got her an apartment directly

downstairs from me. I thought I was going to lose my mind!!! It was a very tough

adjustment! She was suddenly sooo needy, and was so good at giving the guilt

trips.( I don't think this is the case with you but I think the result was the

same) I became very depressed and tired and lost 30 pounds in just a few months,

I was no longer able to work because mom took up almost all of my time and plus

I just became no good at dealing with people. I hate to admit this part but I

ended up really not taking care of myself to the point that I was no good for

anybody. Well I decided to pull myself together and start taking care of myself.

I went on a 3 day vacation(it would have

been longer if I could have afforded it) I didn't even go out of town but very

few people knew where I was. I got someone to sit with mom, and spent the entire

3 days just thinking of what I needed. Somehow during that time I learned not to

let my mom " guilt trip " me. I don't know how that happened but it was a

liberating experience. I somehow just figured out how to balance my life better.

I went to the doctor and was prescribed prozac and klonopin for depression and

anxiety. Thank God I had a doctor that would do that! She's not a good doctor

for anything else but she listened to what I felt that I needed. And oh how it

has helped me. I have now gained back all the weight I lost and then some, but I

am doing so much better.

Well then there's my husband. He is now having a hard time adjusting to the

Lewy coaster that's going on. As long as my mom didn't live with us he didn't

have to deal with much. Well now he has high blood pressure, depression and

anxiety. The doctor has given him something for the bp and depression but won't

prescribe anything for anxiety or sleeping problems. He has lost about 10 pounds

this month and watching him is like seeing myself back when I first started

caring for mom. I think it is a very normal reaction to this kind of situation.

This is just not easy and I don't think anybody would want to see their loved

one suffer from this.

Like your siblings, my sister has nothing to do with care for my mom. In fact

she lived in the town that I had to go and get my mom from. I would have loved

for mom to be able to stay in the state that she loved among familiar people.

But my sister needs her own kind of help. and that's a whole other story.

Anyway, I don't think there's anything that I can actually say to make

anything any better, but don't let anybody make you feel any worse! If there's

any way to go to a different doctor? Ron, just know I'm here when ever you need

to vent. Like I said, you have been a good shoulder for me, I'm here for you.

Please take good care of yourself! Let me know how you're doing!

Hugs to you,

Keli

ron frye wrote:

Hi everyone.Went back to the doctor today for myself because Im not

having much luck at feeling better.Wanted to discuss staying tired,

forgetting,dramatic weight gain and loss and basically I guess I was hoping that

I could treat some of this with medication of some sort.My big thing is I dont

want to get sick and not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and prevacid

for stomache woes.So Im thinking we will treat these new symtoims and go from

there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I have my

list of what to talk to the dr about and I read it off to her and she instantly

goes into a long tyrade of me not taking care of myself.So I try to explain to

her that Im a 24 hour caregiver and it just basically gets worse.We never did

see eye to eye and I got nothing to help me with my problems so basically I just

got more stress from being so irate at the lack of understanding I get in my

life.So Im laying it out to anyone hear that will listen.And i respect oppinions

and reeally would like to know if Im wrong and if I really can change my

situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there is a

million things Id like to do but If the help isnt there then I cant change that.

3.I really feel like if it isnt me doin this then mom is screwed and in a nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of my

siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all this

and keep me from getting sick and instead Im feeling like Im wrong for being

this way AND I got absolutely no help today at all to deal with the memory,

sleep, fatigue, and weight fluxuations.Can someone just tell me how the hell I

am supposed to change my lifestyle doing this?If I could wake the hell up in the

morning and be a famous rock star I would but Im ron and I take care of my mom

and everytime I ask for help I get advice that just doesnt even apply to my

life.

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

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Ron, I'm sorry to hear about this. I don't have much to say except you

must find some YOU time. Is there any way even a neighbor or family

friend can visit for an hour or two on a regular basis just for you to

do something for you? And I agree w/ Imogene -- I bet your siblings are

finding they have the easy way out w/ your CNA experience. And you must

do as Imogene suggests and put your foot down and request help -- even

if it's having them do the groceries for the house, research online for

you, yard work or something. And I agree w/ others that your doctor

isn't that useful and if possible find another. I wish I had the

answers that you need. And you have no need to be sorry - this board is

for you to vent as much as you need to or like. Sometimes just writing

the words down and seeing them in black & white helps a bit.

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We wish we could hug you too, Ron. But, we try to do the next best thing and

that is to talk to you. You can say it like it is because you know that we

feel exactly what you are feeling. Caregivers are a very caring group. That is

why everyone on this list is so kind and understanding. They all have a lot

of love to share, and we all share it with you, Ron.

Love a bunch,

Imogene

In a message dated 10/15/2007 8:28:52 PM Central Daylight Time,

dawgg4456@... writes:

Hi everyone, Thank you all so much for reaching out and I cant tell you how

great it feels to really be understood as if I am not from another planet.You

all mean so much to me you could just never know.Whishing you all peace and

happiness tonight and always and again Thank you so much for caring , I was

deeply moved this evening when I saw all of the posts.Seriously wish I could

just hug you all

************************************** See what's new at http://www.aol.com

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Hi everyone, Thank you all so much for reaching out and I cant tell you how

great it feels to really be understood as if I am not from another planet.You

all mean so much to me you could just never know.Whishing you all peace and

happiness tonight and always and again Thank you so much for caring , I was

deeply moved this evening when I saw all of the posts.Seriously wish I could

just hug you all

ppark4915@... wrote: Hi, Ron,

I would really like to pinch your doctor's head off at the moment. I am

sure she means well, but she definitely doesn't get it. Most doctors have no

idea what caregiving really is - especially 24/7. I had many of the same

feeling you are having now when I was taking care of my dad. I didn't want to

put

Dad's care in the hands of strangers either. I tried having a few people,

and Dad didn't respond very well to anyone but me. I have siblings, too, and

mine were about as much help as yours are. I would ask for help, and both of

them would always have some excuse or pitch a fit, so I stopped asking. You

are right - if the help isn't there, it just isn't there. As Dad got

progressively worse, my mother was always trying to put Dad in a nursing home,

and

that was always uncomfortable. I had power of attorney for my dad so my

mother was not in charge of making decisions for him. I know, it all sounds

strange - it was strange. My dad and I had always been really close, and I guess

he knew who he wanted making decisions on his behalf. I felt like you do,

that I had my reasons for doing what I was doing, and it just wasn't worth

explaining anything to anyone because they wouldn't understand it anyway. It was

between my dad and I, and that is all that mattered - just like it is between

you and your mom. I wish I had some great advice to give you. I don't have

a lot of advice, but I have a tremendous amount of understanding. I

eventually did find a lady to who my dad responded well. She would come two

afternoons per week for a few hours and be with my dad. I wouldn't leave the

house,

but it would give me some time to do my work or whatever else I could do -

maybe even rest. This lady couldn't do any heavy lifting with my dad, but he

liked being with her. I would be home to do anything that was physical if he

needed it. Would your siblings that won't help with your mom's care be

willing to pitch in towards hiring a small amount of outside help to give you a

break? You could still be home so you would know what was going on with your

mom, but you wouldn't have to be totally with her during that time. I gained

weight when I was taking care of my dad, too. Comfort food did just that for

me - it comforted me. Don't worry too much about the weight gain. You will

straighten that out in time. I just know it is near impossible to " take care

of yourself " when you are caring for someone 24/7. We know we are supposed

to take care of ourselves, but we can just do what we can do for ourselves.

I do know that you will be really glad that you took care of your mom, and

you will never regret it. I am going to stop rambling now. I just wish you

weren't having to go through what you are going through. Please come here and

rant whenever you need to. We are here for you.

Big hugs,

Piper

************************************** See what's new at http://www.aol.com

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Hi Ron,

My heart goes out to you. I couldn't agree with Imogene more especially when

she writes about your siblings: They are seeing their mother being cared for by

a qualified person, and that eases their burden, while not thinking for a minute

that you also need help.

I know that your sisters are a little bit more supportive of you. Is there

anyway you can speak to them and tell them that you all need to sit down and put

a schedule together? Even if you get 5-6 hours to yourself one day a weekend

something is better than nothing. Is your mom able to attend Adult day care for

a day or so during the week? Just throwing things out there. I wish I knew what

to say but no matter how much help we need we just can't force our siblings to

do the right thing.

A few caregivers on this list have had to go on anti-depressants because of all

the stress and from personal experience I can tell you that you don't have to

stay of them forever. I took them for about 5 years but was finally able to

wean myself off them completely when I felt ready. However, they did help me so

very much when I needed that help. Is there another doctor you can go to?

Hopefully this one will be more supportive and may even have a few ideas????

Ron, wish I lived near you because I'd come over and help you.

Courage

Re: sorry off topic, (just need to vent a little)

Ron, I had wondered why you were home when you had siblings. But, through

time, I have learned that you are a CNA and still earning enough to sustain

you, and can care for your Mom at the same time. That is exactly what your

siblings are seeing. They are seeing their mother being cared for by a

qualified

person, and that eases their burden, while not thinking for a minute that you

also need help.

Ron, I am so sorry. You will have to put your foot down with your siblings.

Everyone gets time off from work, and work around the clock is what you are

doing. Without that time off you will break. You need refreshing time for you.

Totally away from this responsibility for a couple of days a week. Also,

some way, you Mom could use something to help her sleep, so you can sleep. NO

one can continue the way you are and not burnout.

Fire your Doctor, and get another that understands your problem. When you

are about to crumble you don't need scolding. You need help.

Now, if it sounds like I am scolding, I am not. I love you Ron, and felt

terrible about your burden.

This is what I am facing. But, right now my Man sleeps.

Ron, I am so terribly sorry. You need to cry on someone's shoulder, that

understands. Believe me we do. We are here for you. I am glad you wrote.

Please keep us posted on your situation. I really worry for you.

Love so much,

Imogene

In a message dated 10/15/2007 3:30:19 PM Central Daylight Time,

dawgg4456@... writes:

Hi everyone.Went back to the doctor today for myself because Im not having

much luck at feeling better.Wanted to discuss staying tired,

forgetting,dramatic weight gain and loss and basically I guess I was hoping

that I could treat

some of this with medication of some sort.My big thing is I dont want to get

sick and not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and

prevacid for stomache woes.So Im thinking we will treat these new symtoims and

go

from there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I have

my list of what to talk to the dr about and I read it off to her and she

instantly goes into a long tyrade of me not taking care of myself.So I try to

explain to her that Im a 24 hour caregiver and it just basically gets worse.We

never did see eye to eye and I got nothing to help me with my problems so

basically I just got more stress from being so irate at the lack of

understanding I get in my life.So Im laying it out to anyone hear that will

listen.And i

respect oppinions and reeally would like to know if Im wrong and if I really

can change my situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there

is a million things Id like to do but If the help isnt there then I cant

change that.

3.I really feel like if it isnt me doin this then mom is screwed and in a

nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of

my siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all

this and keep me from getting sick and instead Im feeling like Im wrong for

being this way AND I got absolutely no help today at all to deal with the

memory, sleep, fatigue, and weight fluxuations.Can someone just tell me how

the

hell I am supposed to change my lifestyle doing this?If I could wake the hell

up in the morning and be a famous rock star I would but Im ron and I take

care of my mom and everytime I ask for help I get advice that just doesnt even

apply to my life.

************************************** See what's new at http://www.aol.com

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Boy, Ron,

I was an only caregiver and I use to hate it when people asked to take care of

myself. I knew I should, I just didn't know when I could.

Hope you find a real MD. who will help you and not be so critical. You need

lots of support right now. Like you don't know you aren't feeling good? Did

you get over the pneumonia? Or is that still a part of it.

I gained a lot of weight when I had Mom at home because I never ate as much as I

did when I was fixing it for her.

Hope there is someone who can regularly give you a hand. I did do what I could

of day care and it helped. Just have to take those breaks.

And when I couldn't I would walk into the AD offices and ask to talk to a Social

Worker. I would scream, holler and do what ever I had to for an hour straight

and then I could do some more time. They would be ever so patient and listen to

me cry.

My good thoughts come your way tonight. You can worry about weight another day.

Maybe some BP bills would help? I hope she gave you those.

Sorry and lots of hugs coming your way.

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.

sorry off topic, (just need to vent a little)

Hi everyone.Went back to the doctor today for myself because Im not having much

luck at feeling better.Wanted to discuss staying tired, forgetting,dramatic

weight gain and loss and basically I guess I was hoping that I could treat some

of this with medication of some sort.My big thing is I dont want to get sick and

not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and

prevacid for stomache woes.So Im thinking we will treat these new symtoims and

go from there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I have my

list of what to talk to the dr about and I read it off to her and she instantly

goes into a long tyrade of me not taking care of myself.So I try to explain to

her that Im a 24 hour caregiver and it just basically gets worse.We never did

see eye to eye and I got nothing to help me with my problems so basically I just

got more stress from being so irate at the lack of understanding I get in my

life.So Im laying it out to anyone hear that will listen.And i respect oppinions

and reeally would like to know if Im wrong and if I really can change my

situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there is

a million things Id like to do but If the help isnt there then I cant change

that.

3.I really feel like if it isnt me doin this then mom is screwed and in a nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of my

siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all

this and keep me from getting sick and instead Im feeling like Im wrong for

being this way AND I got absolutely no help today at all to deal with the

memory, sleep, fatigue, and weight fluxuations.Can someone just tell me how the

hell I am supposed to change my lifestyle doing this?If I could wake the hell up

in the morning and be a famous rock star I would but Im ron and I take care of

my mom and everytime I ask for help I get advice that just doesnt even apply to

my life.

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

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Dear Ron,

I'm sorry but when I read this last night I don't think I was very helpful!!!

This morning I was going over some of the mail from yesterday and as I re-read

the last part of your letter I realized that I was just another one of those

saying " wake up and be a rock star " . I sometimes just get caught up in what

works or worked for me that I forget that everyone has their own unique

circumstances. Lifestyle changes are sometimes next to impossible. Everyone does

the best they can do, and really the best you can do is all that you CAN do.

As far as the meds go though, I really wish you were able to get what you

need. I hope things get a little easier for you, and I'm sending all positive

thoughts and energy your way, lots of prayer too. Hugs to you Ron,

Keli

ron frye wrote:

Hi everyone.Went back to the doctor today for myself because Im not

having much luck at feeling better.Wanted to discuss staying tired,

forgetting,dramatic weight gain and loss and basically I guess I was hoping that

I could treat some of this with medication of some sort.My big thing is I dont

want to get sick and not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and prevacid

for stomache woes.So Im thinking we will treat these new symtoims and go from

there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I have my

list of what to talk to the dr about and I read it off to her and she instantly

goes into a long tyrade of me not taking care of myself.So I try to explain to

her that Im a 24 hour caregiver and it just basically gets worse.We never did

see eye to eye and I got nothing to help me with my problems so basically I just

got more stress from being so irate at the lack of understanding I get in my

life.So Im laying it out to anyone hear that will listen.And i respect oppinions

and reeally would like to know if Im wrong and if I really can change my

situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there is a

million things Id like to do but If the help isnt there then I cant change that.

3.I really feel like if it isnt me doin this then mom is screwed and in a nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of my

siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all this

and keep me from getting sick and instead Im feeling like Im wrong for being

this way AND I got absolutely no help today at all to deal with the memory,

sleep, fatigue, and weight fluxuations.Can someone just tell me how the hell I

am supposed to change my lifestyle doing this?If I could wake the hell up in the

morning and be a famous rock star I would but Im ron and I take care of my mom

and everytime I ask for help I get advice that just doesnt even apply to my

life.

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

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<snip> ...I use to hate it when people asked to take care of myself.

I knew I should, I just didn't know when I could. <snip>

I remember that too. Or when people would ask how are YOU doing? Me?

ME? What about Mumsie! Of course they were well-intentioned and

thinking about my best interest - but when you're in the active

caregiving role, in the moment -- life just seems to revolve around

your LO and I'd be bitter when questions about me and my well-being

were mentioned... Of course they're right. There are many here who

have suffered the consequences of NOT taking care of themselves.

Minor for me, thankfully - still have dental issues that needs

resolving - had I not procrastinated myself during the journey - but

when your 'in the moment' 'in the active caregiver role' it's

difficult to find the time, energy, thought process on yourself. You

figure, well I'll just deal w/ myself later. But sometimes, it's best

to put yourself in first spot - only to avoid issues in the future.

Another was postponing a doctors appt. w/ a dermatologist, again,

remembered all of mom's appointments, but forgot my own. And had to

deal w/ a biopsy - was benign - but again we gotta stop and think

about ourselves. So, even though it's annoying when people mention

YOU - take their advice and remember YOU. You know?

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Ron,

If you don't mind, I have a few quick questions:

1) Is there any possibility whatsoever that one of your siblings would

help out for two hours a week?

2) If the answer to the above question is NO (or even if it's YES), is

there someone else (a neighbor, friend, another CNA) who could work 2 hours

a day or a few hours every few days? If so, would you be able to pay them?

3) How much time (literally) do you have for yourself to: a) go for a

walk, to the gym B) buy healthy food c) cook some healthy food

4) I don't know if you have ever in your life done any meditation. If you

have, have you been doing some? If you never have, would you like to try?

Thinking of you and wishing you well, Norma

ron frye

<dawgg4456yahoo (DOT)

com> To

Sent by: lbdcaregivers

LBDcaregivers@yah cc

oogroups.com

Subject

sorry off topic,

10/15/2007 04:30 (just need to vent a little)

PM

Please respond to

LBDcaregivers@yah

oogroups.com

Hi everyone.Went back to the doctor today for myself because Im not having

much luck at feeling better.Wanted to discuss staying tired,

forgetting,dramatic weight gain and loss and basically I guess I was hoping

that I could treat some of this with medication of some sort.My big thing

is I dont want to get sick and not be able to take care of mom.

Since starting the lewy trip Ive been put on zoloft for depression and

prevacid for stomache woes.So Im thinking we will treat these new symtoims

and go from there.

Well when I get there I find that my blood pressure is 175 over 115.And Ive

gained 34 pounds in a month after losing over 70 pounds in 6 months.So I

have my list of what to talk to the dr about and I read it off to her and

she instantly goes into a long tyrade of me not taking care of myself.So I

try to explain to her that Im a 24 hour caregiver and it just basically

gets worse.We never did see eye to eye and I got nothing to help me with my

problems so basically I just got more stress from being so irate at the

lack of understanding I get in my life.So Im laying it out to anyone hear

that will listen.And i respect oppinions and reeally would like to know if

Im wrong and if I really can change my situation;

1.Its very important to me not to put mom in the care of a stranger.I could

explain it but its long and just hate to go into it now

2If I could get more help from family members I would its that simple there

is a million things Id like to do but If the help isnt there then I cant

change that.

3.I really feel like if it isnt me doin this then mom is screwed and in a

nh.

4.I dont think Id enjoy my life anyway if I turned my back like the rest of

my siblings seem to be able to do.

Basically thats how I feel I just wanted something to help me cope with all

this and keep me from getting sick and instead Im feeling like Im wrong for

being this way AND I got absolutely no help today at all to deal with the

memory, sleep, fatigue, and weight fluxuations.Can someone just tell me how

the hell I am supposed to change my lifestyle doing this?If I could wake

the hell up in the morning and be a famous rock star I would but Im ron and

I take care of my mom and everytime I ask for help I get advice that just

doesnt even apply to my life.

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

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ron --

a. i'm wondering what the doc does say about a. your

going off the anti-d's ,b. about your bp -- and did

she put u on meds? c. any other

treatements/follow-ups, etc? you aren't going to be

any help to your mom if you are dead. period. so --

what's your plan for your good health. want to

train for that run togehter? is making a

health/fitness plan soething you need/want help with

and/or can do in the next week? (at least food,

sleep, exercise) is building in a weekly food plan

something you can add to your life?

b. i know folks are saying to ditch the doc -- but you

really like the doc, right? and it sounds like in the

end (based on our conversation you and i had by phone

last night) that you are actually going to take

some/much of her advice. do you really want to

terminate that relationship or is it one worth

revisiting with another conversation with her letting

her know how you feel.

i didn't like it when my grandfather would fuss at me

to eat and sleep properly when i was going to

school/working a zillion hours/partying like a rock

star -- but in the end, he was right, and maybe the

only way he could be heard over my clamorings of

denial that i was fine and there was no choice and

absolutely NO solution to my situation was to be stern

and a little gruff --- and loud. lol -- unusaual for

him, but sometimes the only way to get through to me.

c. sounds like you've identified some excellent

solutions --

to try and get 25% of your time back (42 hours a

week.)

1. to ask at least 2 and maybe 3 of your siblings to

committ to caregive for your mom according to a set

schedule weekly.

2. to investigate whether or not you can get paid for

more of the time you do cg for your mom as a cna.

3. to make contact with the local chapter of the alz.

assn. and get in their program for caregivers

inccluding their one on one caregiver casemanager

program -- where they work to identify all options for

the CAREGIVER to get respite.

4. to investigate other resources available for

respite care via hospice, other area organizations,

churches, community groups, etc.

d. i really urge you to get to the local caregivers

support meetings once a month at least. as great as

this group is, i think there's something to be said

for being in the room live with folks, too AND you can

pick up some handy tips about the local system from

the locals!

big love,

anna

--- Donna Mido wrote:

> Boy, Ron,

>

> I was an only caregiver and I use to hate it when

> people asked to take care of myself. I knew I

> should, I just didn't know when I could.

>

> Hope you find a real MD. who will help you and not

> be so critical. You need lots of support right now.

> Like you don't know you aren't feeling good? Did

> you get over the pneumonia? Or is that still a part

> of it.

>

> I gained a lot of weight when I had Mom at home

> because I never ate as much as I did when I was

> fixing it for her.

>

> Hope there is someone who can regularly give you a

> hand. I did do what I could of day care and it

> helped. Just have to take those breaks.

>

> And when I couldn't I would walk into the AD offices

> and ask to talk to a Social Worker. I would scream,

> holler and do what ever I had to for an hour

> straight and then I could do some more time. They

> would be ever so patient and listen to me cry.

>

> My good thoughts come your way tonight. You can

> worry about weight another day. Maybe some BP bills

> would help? I hope she gave you those.

>

> Sorry and lots of hugs coming your way.

>

> 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.

>

>

> sorry off topic, (just need

> to vent a little)

>

> Hi everyone.Went back to the doctor today for myself

> because Im not having much luck at feeling

> better.Wanted to discuss staying tired,

> forgetting,dramatic weight gain and loss and

> basically I guess I was hoping that I could treat

> some of this with medication of some sort.My big

> thing is I dont want to get sick and not be able to

> take care of mom.

> Since starting the lewy trip Ive been put on

> zoloft for depression and prevacid for stomache

> woes.So Im thinking we will treat these new symtoims

> and go from there.

> Well when I get there I find that my blood

> pressure is 175 over 115.And Ive gained 34 pounds in

> a month after losing over 70 pounds in 6 months.So I

> have my list of what to talk to the dr about and I

> read it off to her and she instantly goes into a

> long tyrade of me not taking care of myself.So I try

> to explain to her that Im a 24 hour caregiver and it

> just basically gets worse.We never did see eye to

> eye and I got nothing to help me with my problems so

> basically I just got more stress from being so irate

> at the lack of understanding I get in my life.So Im

> laying it out to anyone hear that will listen.And i

> respect oppinions and reeally would like to know if

> Im wrong and if I really can change my situation;

> 1.Its very important to me not to put mom in the

> care of a stranger.I could explain it but its long

> and just hate to go into it now

> 2If I could get more help from family members I

> would its that simple there is a million things Id

> like to do but If the help isnt there then I cant

> change that.

> 3.I really feel like if it isnt me doin this then

> mom is screwed and in a nh.

> 4.I dont think Id enjoy my life anyway if I turned

> my back like the rest of my siblings seem to be able

> to do.

> Basically thats how I feel I just wanted something

> to help me cope with all this and keep me from

> getting sick and instead Im feeling like Im wrong

> for being this way AND I got absolutely no help

> today at all to deal with the memory, sleep,

> fatigue, and weight fluxuations.Can someone just

> tell me how the hell I am supposed to change my

> lifestyle doing this?If I could wake the hell up in

> the morning and be a famous rock star I would but Im

> ron and I take care of my mom and everytime I ask

> for help I get advice that just doesnt even apply to

> my life.

>

>

> ---------------------------------

> Need a vacation? Get great deals to amazing places

> on Yahoo! Travel.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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Don't sweat if Ron. You'll get through this knowing you did what was right and

honorable. My doc got on me for gaining weight and not having several tests she

recommended. I know she's right but she's also very wrong. I simply don't

have time or tolerance for her lack of understanding so I haven't been back.

When things simmer down on the homefront, I will find another doctor. I do

need to take better care of myself and deal with several health issues but when

there's a constant state of emergency, my health is not at the top of my to-do

list. Dimwits, twits and the uniformed will say you need to take a vacation, you

need to do something for yourself, you need to do this or that. What you really

need is 72 hours in a day, siblings that share responsibility equally, limitless

energy, the ability to live without eating, sleeping or spending money AND to

have Poppins float by to clean your house, cook all meals and transform

your mom to the person she was 20

years ago ... but since that's not going to happen this week, keep doing what

you're doing because it's right and you're not going to neglect your

responsibilities because of the shortcomings and stupidity of others. Have a

great day despite LBD. You've earned it.

Unfortunately, I can't help you with the forgetfulness. LBD is contagious and

that's just the way it is. My brain is shot. I used to write things down in a

notebook because there was so much to keep track of but I can never find the

notebook so I stopped trying.to keep track of things.

ron frye wrote: Hi everyone,

Thank you all so much for reaching out and I cant tell you how great it feels to

really be understood as if I am not from another planet.You all mean so much to

me you could just never know.Whishing you all peace and happiness tonight and

always and again Thank you so much for caring , I was deeply moved this evening

when I saw all of the posts.Seriously wish I could just hug you all

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