Tired and Hopeless

Pearl53March 6, 2005

Here's my story. In April of 2002, I was living and working in another town. My brother calls me one night and says my mother is at one of the neighbors' houses and she refuses to come home with him. (His house and Mother's are next to each other.) I told him I would be right there. So I get some things together and drive home - 55 miles. When I get there I see the situation isn't going to improve any time soon so I move home. I have been here with Mother ever since. She is 89. I am the youngest of three. Single, no children. Mother and I were always close so I was the most logical one to take care of her.

I have been taking care of her for almost 3 years now and I am totally physically, mentally, and emotionally exhausted. I have one sister but she lives 100 miles away, has a large family and takes no interest whatever in wanting to help out with Mother. She seems to think it is not her responsibility. She comes maybe once every month or every two months, brings some junk food for Mother to eat, stays maybe a couple of hours, thinks she has done her duty and goes home. After she leaves it takes me the rest of the day to calm down about her insensitivity.

My brother is a little better after I blew up a couple of months ago and told him how tired I was and that I needed some help and some breaks once in a while. I am trying to hold my job, which is 55 miles away. So far I have been able to do it thanks to understanding bosses. My sister-in-law has been the biggest help. After I told my brother I needed help, she started coming over and giving Mother her lunch everyday and helping with the bedding and other things. He also comes over once a day and does little things like taking the garbage out. It may not sound like much but just the little things like that help me so much.

But they aren't here enough to understand the strain and drain of it all. It is a 24/7 job. Mother has dementia and can't think clearly enough to go to the potty at night which is right next to her bed without a little help. Sometimes she can manage but when she moves around making noise and wakes me up, I go and help her otherwise it takes her forever and it takes me forever to go back to sleep.

Now I am so tired and drained. I feel like I can't go another day. I feel like God has completely forsaken me and my Mother.

I have been wondering lately what will happen to me when and if I get old. There is certainly no one to take an interest in caring for me like I have been caring for Mother. And to be perfectly honest, I wouldn't want them to. Why should anyone disrupt their lives the way I have disrupted mine. I don't regret doing it, but I do regret not being given enough physical strenght to do it. Sometimes in the mornings I fall into the car to go to work crying because I am so tired. So I am going to start checking out the assisted living facilities for myself for down the road. I am really in the dark about these sort of places. They make them seem perfect but I don't know.

All I know is I am tired, disgusted with people, life and God. I am worried about my own future. All this isn't doing my own health any good.

That's my story.

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Dear Pearl...Welcome to the forum! Your story is the same as mmine and others here. My mother had multi-infarct dementia and gradually lost all her capabilities over a period from 1997 til 2003. It was a very longhaul. My sister is in CA and remotely interested in our plight...but always willing to exhort all my shortcomings and errors in the process. I, too, felt abandoned by everyone, including God.
First, be ASSURED that God has not abandoned you. HE can absorb your anger and sorrow. THIS is what is getting you through. It is so very hard. There were times when I went to work with an hour or two, if that, of sleep. Thankfully, did not have to drive 55 miles! I know what you mean about appreciating your brother's help and that of his wife, but, yet, tis not enough....at times you can feel like a sponge that can soak up all the help you can get...and still drip.
Do you have, or can you get, any professional help with your mother....maybe from the local ALZ assoc. Sometimes even having a sitter a few hrs a week can be such a relief. Even if it is just another person to talk to. I surmise your friends at work are too far away to be of much help....but maybe not. Sometimes you have to ask. My colleagues were very good about asking,but
that is where it stopped. I was not good at asking for help.
I,too,often wonder about the years to come. This is a good time to investigate assisted living, if not for yourself, maybe even for your mother. Unhappily, things will get more difficult as it goes on.
You are to be commended for the help you are giving your Mom...give yourself a big hug right now.
We are glad to have you here, and there are a lot of good people here with good suggestions and willing "ears". Some of them got me thru some very dark days.
Hope comes in many forms...be sure you are hoping for the right things and don't lose it. Someone once said hope is the restoration of being....I firmly believe it.

    Bookmark   March 6, 2005 at 12:26PM
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It's a wonderful thing that you are doing, but you do need to plan for the future. As her condition gets worse, you will be faced with having to quit your job, getting help everyday (and that doesn't help at night!) or moving her into a home. Start planning so that if you decide to move her, you will know what's available and what suits your family best. Think about what's best for everyone.

    Bookmark   March 6, 2005 at 1:31PM
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Hello, Pearl, and welcome!
So many stories on this board, and many are so familiar.
My DH and I look after my 91year old Mother in our home *and have for over 10 years, and believe me, I've been in your shoes! My brother and his wife and daughter swoop in on two holidays a year, do their duties, and return home 5 hours away...blissfully unaware of the toll care-giving takes on us.

Is it possible that at the very least she can move in with you and at least your travelling would be cut down? That must be exhausting! I'm not sure where you live, but it's probably like Canada, where you can get free daily care for her in your home, plus some house-keeping. That would be ideal, esp if she can be alone for a few hours after those visits. My Mom can't be alone, so we can only 'escape' when her care-worker is here, about 14 hours a week. But what a blessing that is!!

It' nice that your SIL recognizes your position and provides you with some assistance, as well as your brother, but as nice as that is, Pearl, if you don't look after yourself (VERY familiar theme on here!), you won't be able to look after anyone else, either. Going to and from work to more work at home, nevermind missing sleep is going to take a tremendous toll on your body and emotional health. You have to get help...! Call your local health-care providers and organizations and at least get home-care for her. And consider moving her closer to you....much easier than leaving your job, and as she gets on, you'll have to do just that to provide the care she'll need.

A nursing home would be ideal...

For now...do what we do...take it one day at a time, take breaks when WE need them, get as much care provided by other organizations as we can, and if you need to yell at someone, this is a pretty safe place to do it.

HUGS and Blessings

    Bookmark   March 6, 2005 at 3:07PM
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Hey Pearl...Keep coming back here. These people don't mind how cranky you are or discouraged or depressed. We've all been there; most are there right now.

I've noticed the ones who do are the ones who do; if you get my drift. I have no siblings and both my parents (because they lived far away)let their siblings care for the parents. The irony doesn't escape me.

With my mother-in-law (my first ordeal with caring for an invalid) I KNEW it was the right thing to do. She wasn't being care for at the assisted living faucility (sp). That was the only thing that kept me going those 3 years, knowing it was right. Through the selling of her house, my husband paid for someone to help me 4 days a week until mid-afternoon; but I had to turn her and treat the bedsores, do the feeding tube and meds. I kept saying to my self...I will be able to stand by her casket with a clear conscious. And thank you Jesus, I could and I don't regret it...now that it's over. But with my parents now...and going on 12 yrs., I don't talk so big!!

Get help through local Senior Services. Try Elder Care or the hospital's Home Health Care...something. I know the Meals on Wheels people take a special interest in my Mom and enjoy *visiting* with her for a while.

I know you are like most of us...dreading tomorrow...because it will be more of the same.

I truly do NOT want to load you with anything and maybe it's not true of you, but as much as I HATE the responsibility, I know it's the right thing to do. The sad commentary on our families and our culture is that it has become a *lost* duty, jointly performed by all family members.

Have you let your church family know that you need some help? Frankly, it's a Biblical mandate that is also ignored. I'll be praying for you.

    Bookmark   March 6, 2005 at 9:37PM
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Here's another voice to join the chorus. I'm relatively new to the job of caregiver (at a mere 18 mos.) but I've done my turn on the wheel, too. Depression, TIAs that eroded Mum's mental acuity to such an extent she really could no longer manage on her own, cancer, surgery, and then a major stroke that has really complicated things.

My brother is supportive, but it's you know who who's been dealing with the daily responsibility and grind. I, like jatfla, do it because it's the right thing to do. Mum isn't so far "gone" that a nursing home is the answer, but do I ENJOY this aspect of my life? no way. I get up "dreading tomorrow", too... and because it's going to be exactly like all those that have gone before.

And my present duties are a lot easier than those of so many of you! I desperately miss being footloose and fancy free. My life revolves around urine and pills. Maintaining a sanitary urostomy, daily struggles to get enough liquid into her to keep UTIs at bay, patiently explaining that, NO, you may not have bread and butter and caffeinated tea or coffee (EVERY SINGLE DAY). Did you take your pills? I'm not going to tell you the date; you must look at your calender and figure it out for yourself.

We have no children, either. And I share your worry about will happen to me in my old age. It is my sincerest hope that there will be no prohibition on assisted suicide by then. In the meanitime, I watch my health (unlike my mother!) and hope for the best.

It's hard.

    Bookmark   March 7, 2005 at 6:37AM
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Dear Pearl,

My goodness, I don't know how you do all this. After 3 yrs no wonder you're exhausted.

In my work as a helper of seniors maintaining a life in their homes there comes a time for families to step in & decide how best to care for their parents. Both my DH & I are young seniors & get the most reward by assisting families. Our mothers are in facilities & DH doesn't miss a day of visiting his mother now that he moved her here. I do count on my mother's caregiver in a AFH as her dementia has worsened & she could no longer be left alone. Once her caregiver "burned out" we had to move Mom where she would be safe. My Dad is trying to remain in independent living & is adjusting to a recent move here. We now have our parents close by & this seems right for us.

For many years I cared for my husband until his death & it was so rewarding. I never asked for help & became so tired. Later when I helped my MIL her daughter said she didn't need any assistance with her. She also became exhausted. I guess it's the choices we make & God does lead the way...
Hope this helps.

Sincerely, Sharlee

    Bookmark   March 7, 2005 at 2:51PM
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Pearl, your story could have been mine. I am an only child (not married, no kids) and in December of 2003, my mother was diagnosed with a brain tumor. Thus overnight we were catapulted into a round of doctors, tests, biopsy, radiation, etc. Throughout it all, I kept Mom at home (I lived about a mile away). I got her in-home services and Meals on Wheels through the elder services agency in town. I eventually got her a visiting nurse and a home health aide, too. I went over every night after work, made her dinner, saw to her needs, and then went home (only a mile away). On the weekends, I was there most of each day. That is small potatoes compared to what some of you on this board go through, and I was exhausted from that. Then she got a blood clot in her leg, ended up in the hospital, and as I was having surgery myself, I asked if she could go to a short-term rehab for a while afterwards. She began to decline and very reluctantly, I admitted her to the long term care part of the facility, NEVER GIVING UP HOPE that I could find some way to bring her home and take care of her.

You see, I was brought up with the mantra that there was no greater shame than "throwing your parents into a nursing home." I suffered terrible guilt over leaving Mom there, even though every single health care professional I met (whether they were hers, mine, or friends in the field) told me there was no other way. I visited her every day, with rare exception, and I gave her the best I could afford. I hired an elder care manager to come in and monitor her care, had an accupunturist come to the nursing home to give her treatments, etc. I have no regrets about what I did. But I can see in hindsight that I never would have been able to care for her at home. The health care professionals obviously knew the course that this terrible disease would take, and the level of care that she would need. It boggles my mind that Medicaid will pay for nursing home care, but will not pay for 24/7 care in the home (where most people want to be, anyhow).

Now I know your mother's situation is not as dire. But YOU are in rough shape. You need to get some help. Have you connected with the elder services agency in your area? Those folks are a wealth of information and support, in addition to the services they arrange. You will not be able to keep up at the pace you are going.

Have you investigated assisted-living and nursing homes for your mother? Be aware that there is a certain level of ADLs (activities of daily living) that a person must be able to perform in order to qualify for assisted living. There is also group adult foster care, which is Medicaid-funded assisted living. Elder services can connect you with all these things and they can give you the support that you need! You are doing a WONDERFUL thing and being the best daughter you can be, but much as we would like to: we can't do it all. My mother adjusted to life in the nursing home, for the most part: in her diminished mental capacities, she often thought she was at home, so I didn't correct her. This was a woman who was sharp as a tack up until her illness, so it never ceased to shock me as I listened to the fantastic fabrications she would weave. I listened to her give her "family history" to the elder care manager and it was all I could do to keep from gasping.

Please let us know how you're doing.

    Bookmark   March 7, 2005 at 7:08PM
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Hi Pearl and welcome! i care for my dh - Al, most of the time he is a sweetie, but there are sometimes.... i too do it alone, except for my 2 dear kids (16 and 21 - who live at home) i have no help at all, his mother lives close to us maybe 6 blocks or so, -- she couldn't even find the time to drop by at Christmas! (i know that al will not be here for along time, that is why our time is precious, and we make every day count), he has a sister who lives on the other side of town maybe 10 minutes away, she only drops by on holidays, and always starts of with can't stay, gotta go, gotta go, drops off gifts for the kids and she's gone! i am sooo tired, but i have learnt from my friends here, and took their advice to be selfish -- i read a book while i have a bubble bath, i just came in from the freezing cold, why because i went for a walk! -- it's about -20 out i went 5 blocks but i will admit i feel good about getting out just for those 15 minutes, my house is a mess, but do you know what i don't care, if no one likes it they can get someone in to clean up stuff, right now our car is sitting in the driveway, don't know what's wrong with it, but i feel this is a blessing i don't have to take anyone anywhere, if they want they can walk! i will also tell you that i am just disgusted with my inlaws, (2 other sisters live out of town, one e-mails about every 3 weeks, the other is rich and snotty and haven't heard from her in about 6 years) i just think it would be nice if they said so do you need any help with anything, i said to my mil gee, carley hasn't been to boulevard in years (huge man made lake her in town with a beach etc. it would be nice if she and i could go for a picnic and you could look after your son for a couple of hours, it was no way! my kids don't like her, because the conversation is her,her and did i mention her, -- if i tell them lets go to grammas they say we were good what did i do - lol. she has no idea what she's missing out! we have good kids who are kind, generous and have good morals, it's gotten to the point that al doesn't even whant to speak to her at all, but i tell him even though i'm so ticked off at your mother, you shouldn't be, she is your mother. so Pearl again i welcome you and try to learn to be selfish once in awhile otherwise you will be burnt out i no time. debbie

    Bookmark   March 8, 2005 at 11:28AM
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Thank you all for your very kind words. You don't know how much I appreciate every word. You have given me some ideas to be thinking about (when my mind is rested enough). Thank you so much.

    Bookmark   March 8, 2005 at 8:43PM
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Pearl, sometimes your heart and your head will be telling you two different things. The tension and stress from that makes everything seem just that much worse. Remember always that if you allow yourself to wear yourself out, you can no longer be of any help to her. It's very hard to place your own health ahead of hers, but you need to be able to do what's best for her. Live one day at a time, but plan ahead!! It can be a long journey, but the people here can help you make it, because they know how you feel.

    Bookmark   March 8, 2005 at 10:11PM
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my brother and I reacted differently to dad's mom moving in after her second stroke...

I was utterly traumatized by watching the woman who took me hiking, and was the captian of her basketball team at Temple in the late 20's shrink into herself.

bro was just grossed out by the whole thing.

our parents are in their 70's- dad's a cranky diabetic, mom's got degenerating discs, and neither of them is really all that good about listening to the Dr's...they're still up and mobile, but it's just a matter of time.

and the MENTION of them giving up their house and moving into one of the local communities - well, let's just say it's not even to be brought up.

oddly enough, I've found that many of my friends are more than willing to pop in on them now and then- in several cases, THEIR parents (who are mostly younger) have also gotten into the habit of stopping by in passing- so the trash can makes it out to the end of the drive, and the dog gets let out to run, and the guy who plows their driveway takes the time to dig out both cars and shovel the walk clear for them, god bless him...

you have every right to feel lost, things going as they are-even an EASY job will leave one exhausted and hopeless if you try and do it all alone- trust me, there are days my GARDEN does that to me!

you might even just start untangling all of this by making lists- the things that are easy to do, the things that take the most time, the hardest thing, a wish list...

but while HE is off holding the hand of all those who don't have even ONE child to care for them- there are other options. whether you're jewish, and she's the Sabbath Queen, or christian and she's one of the Mary's...there are smaller miracles, ones that come through human hands, if you but ask- and then go looking for them.

there's one case right on my block- 15 year old throwaway meets 85 year old shut-in. nearly a perfect match there- the girl really WANTED a home, and isn't afraid of the 'witchy old lady' in the green house...when I moved in, the girl was taking out the trash in exchange for lunch...

the REAL miracle, in my mind, was that for once, social services did the right thing by both parties- the old lady's an official foster mother, now. get regular visits from the social worker, a stipend check from the county- and in benefits both of them no end.

there is ALWAYS a way- not just to survive, but to find a better way to do it.

asking your bratty siblings to pay for a visit from a caregiver instead of coming themselves might work to everyone's advantage-

if I were your mom, dementia or not- I wouldn't want to see them any more than they wanted to see me.

    Bookmark   March 9, 2005 at 3:10PM
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Hi Pearl & welcome to the forum... Caregiving 24/7, traveling 55 miles to work (110 miles round trip!!!), holding down a job... It's a wonder you have any time to sleep! You desperately need to make some adjustments. There were some good suggestions above... I know it isn't much, but I understand the little that your SIL and brother are doing means a lot to you. No one really has a clue as to the load and toll you, as the caregiver, are experiencing... My family never got it, either... I did have one sister who eventually began to help me with some regularity, but she had no clue, either. It's normal to feel that nobody cares, but God does... Please don't give up on Him. I cared for my elderly mother for well over 10 years - the last three of which she was an invalid... It is truly exhausting... Your body aches, your head spins, the weariness is indescribable, but God carried my precious mother and me through it all. He was and still is the source of my strength. My hope and my help is in Him to this day. As you call upon Him, He is Faithful to draw near to you. May He give you and your dear mother sweet sleep tonight... ~breezy

    Bookmark   March 9, 2005 at 11:06PM
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Welcome Pearl, All the others have given good advice. We are here to listen and support you. We all have walked this journey of caregiving...and...many are still on their journey....as Breezy said....God is Faithful!! Just a few of my personnel views...He is always just a prayer away...I couldn't do it...finally with total trust and surrender of I,I,and more I....His Grace and Assurance came. It is hard to give up I,I,I when you are the one who is walking this journey with your loved one. Yes...I have found that others let you down...they just don't get it,stick their heads in the sand(as I like to say),and they simply make their choices and you and your loved one is not on the top of their list!!!! Anger comes...and it takes so much from you....I have prayed so much to let go of my anger at family that they just don't see....my DH has helped with that...he is always telling me that you can't expect others to feel and do...the way you feel and do!!! My Dear Sister loves my parents as much as I do...she...is just one of those people that has their heads in the sand and I have finally realized that I am wasting my time and energy...I except her just the way she is and "DON'T EXPECT MORE"...my time and energy is needed for Mom and Dad. One day she said to me that she felt guilty that she was not here to help more....my reply...very loving...was...you know that is your problem and I can not help you with that...I have enought to think about with all that I am doing....there was total silence and she went on to something else....go figure...I will not allow her to put upon me "her guilt" to deal with. Sorry I have gone on and on but...the one main thing that I have learned is to be good to me...take the time...if their is no help....find it...it is out there...may not be easy to find but it is there...always say yes if someone offers to help in anyway...you are a better caregiver if you take time for yourself. You and your dear Mother are in my prayers....one day at a time Sweet Jesus....there is always HOPE...when we let go and give it all to the Lord. Blessings and let us hear from you....we are here. Nora

    Bookmark   March 10, 2005 at 9:01AM
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Pearl - If nothing else, GET SOME REST! I find that the older I get, the more lack of sleep affects my mood in ways I never thought it would. I can't think straight or make decisions, I feel hopeless and angry -- and that's just from lack of sleep, not to mention all the other aspects you describe. I wish you strength, courage, and somehow, a good night's sleep.

    Bookmark   March 11, 2005 at 4:55PM
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Oh, Nora, where were you when my brother said to me, "I feel bad that we can't be here and help you..."?!
Your answer: you know that is your problem and I can not help you with that...I have enought to think about with all that I am doing.
Honestly....for the past 10+ years she's been with us, he and his wife could easily have said, "We'd love to watch Mom for a week or so, so you can get away..." I try to be fine with it, but when I hear my Mom talk about my brother like he's the Lord's gift to her (her golden-haired boy), it's all I can do to keep from saying, "He would have put you in a home 10 years ago and told me to do the same!"
But of course, I bit my tongue. ouchies....!

With your permission, ;-)...I'll use your response next time he "feels bad" about not doing more. (read: anything!)

Thanks, Nora! ;-D

    Bookmark   March 11, 2005 at 8:49PM
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I so understand how you both feel, guys. Been there. Lara use to ,my MIL speak so wonderful of her daughter, and I wanted to spit out, so bad, so many times, that it was her lovely daughter.....that couldn't have took care of her, but gradually slithered out like a snake with all of her money. It is hard to not open thy mouth and say your piece....but Nora said it so well. I am sure it would make them STOP and think what they are saying. You go girl!

Linda....I am hoping your vacation in August, replensihes you and your husband. You deserve a splendid time and much needed time....Go and enjoy and erase for the present ,all that you can.....

Nora....Sounds like you are having a good time, at home. Retirement is fun huh....do enjoy. Glad to hear your Mother is doing so well. I know she has good and bad days, bu treasure them all. Where is SPRING, ANYONE KNOW???? HUGS Gabby

    Bookmark   March 11, 2005 at 10:07PM
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I can tell you where spring ISN'T! There is no sign of any break in the weather here in Maine. And do I ever need to see a crocus... ;)

    Bookmark   March 12, 2005 at 9:10AM
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Maine huh....well you would think in Kentucky the plants may be sprouting their tiny heads, and warmer weather in store...shoot it is still snowing here but has melted now, expecting rain now....maybe someday. I am sure ready for a change....Gabby

    Bookmark   March 12, 2005 at 11:44AM
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    Bookmark   March 12, 2005 at 1:41PM
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It is snowing -- again -- in Massachusetts. It's March 12. Shouldn't we be looking at the light at the end of the weather tunnel by now?!

    Bookmark   March 12, 2005 at 6:52PM
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Pearl.....I sure hope that things are a little better for you today. Has your weather been yucky too? Weather always adds stress to a situation. We've been busy talking about other things here, I hope you don't think that we are ignoring you. It's just that sometimes when we get to talking about the really big problems like yours, we tend to chatter a little about our own too.

    Bookmark   March 12, 2005 at 7:21PM
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PB, things are still pretty stressful, but I am trying to make some changes. I took Friday off because I was just not up to going in to work. Got some rest and got a little bit done around the house. Last night I slept through the whole night without being woke up for the first time in what seems like months. When I finally woke up and looked in on Mother, she was fine and had gotten through the night ok. (Still don't know how). The weather here today (southern U.S.) has been pretty good. Got up to around 77 with sunshine although the wind has been pretty high. This is a break because the high temp for the past week has been around the 50s with rain just about every day. There are lots of what I call buttercups blooming.
Debbie, 4 ft. of snow!! I can't imagine.

    Bookmark   March 12, 2005 at 8:56PM
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Pearl glad to see that you were able to take some time off and rest, did you feel better at all. we had a dandy day, and because there is no hockey on tv on sat. night they are running 3 movies back to back, the second is groundhog day, and i waon't watch the second one, godfather 2. but anyways, we have a tv station called tvo, kindof like your pbs, a doctor from texas as the guest (shows name is more to life), and he taked about the hurried woman syndrome -- which sounds like all off us! i can't recall his name - i watched it at 5 am on thursday morning! but he does have a book out by that name, he was interesting and talked also about depression, exercise and taking time for oneself, might be a good looksee if your library has it. (-29F right now and waiting for that snow to come p.s they towed our way and think that the spark plugs got wet with oil, cross your fingers it won't break the bank!) debbie

    Bookmark   March 12, 2005 at 9:36PM
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