Not Qualified

[Timshelper]

Small town living got ta love or do you. i was tlaking to my eldest daughter tonight and she asked me if i was miving in with tim and she is happy for both of us. then she broke the news to me that she was talking to her stepmother and she cant understand why i would be moving in with tim unless i had an ulterior motive and i wasn't qualified to even be there. he needed someone who knows what they are doing. brandi explained to her that home care comes in 3 times a day and i was there mostly for the nights. her father never said a word except that tim wa his best freind and he just cant bring himself to go see him. i am totallly furious brandi and her landed up in a big fight until brandi just let it go before it totallly got out of hand. she did say she was sure if anything was crucial and he needed hospital care i would be on the phone calliing 911 asap. the other thing is tim has nothing but tons of records which i sure dont want and i'm not even bringing in any of my own things so he will feel comfortable in just his own surroundings. am i missing something here and i not qualified to do this job? i have been on this forum for over 2 years finding out about this disease and researching it plus i have an in with most of the drs in this city and if i dont get answers i will keep trying until i do. what else do i need to know. the disease will progress and yes there are going to be some very hard times and i may have to do things that i never imagined but i'm not there yet. the thing that really gets me is that i just finally accepted the fact myself that i was moving in. i guess she figues a professional should be doing this job but tim does not want to go intoa home and he cant afford 24 around the clock caregiving. jeez now i'm afraid to even bring up the will. has anyone else come across such ludicris thinking? are other people going to think the same way? i want to phone and tell exactly her what i think about the whole situation but i may get carried away but how dare she even have thought like that when they have had nothing to do with him in months.well i've vented enough goodnight everybody.
kim
als about loving someone

[DebbieD]

Aw kim!! sounds like the evil stepmother!!! whAt's your relAtionship with her like? it seems to me thAt she's just mAking trouble. you're helping A friend out of the goodness of you heArt!! As long As you know thAt, who cAres whAt other people think!! i just feel bAd for you hAving to heAr such crAp!! it's greAt thAt you vented here! we're All in this together!!

[Theresa2004]

Kim, tell everyone to mind their own business. it is non of her concern where you live. as far as your ex being tim's best friend at one point, someone ought to kick him in the behind and pitch in. .my god, how stupid are people? how would he feel if he was in this position.do what yu have to do, and to hell with everyone else.

[Carol Deboer]

Hi all,

my tHinking Has been since tHe beginning of your commitment to tim is to be tHere for Him. you know How i feel kim. you are a incredible friend to Him, and i know tHat tim knows tHis too. as for listening to everyone else, i agree to Hell witH tHem all. you are tHe only one you Have to answer to. my feelings are tHat if you can not support someone going tHrougH a critical situation as tHis, you really need to reassess your friendsHip. However, tHis is not tHe case Here, so, do wHat you Have to do. tim is depending on you, and i know tHat you do not want to let Him down. as for you not being a professional caregiver, wHo tHe Hell is Here? we are all learning as we go Here, and we are probably more informed and in tune witH tHis als tHing tHan most professionals, even tHe doctors. tHey do not live witH it 24/7, and until anyone does, tHey sHould not question our abilites to care or to nurse anyone wHo Has als. we are still learning sometHing new eacH and every day. i suppose we will until tHe end. and wHen tHat is it, we will be better equipped to Help and to guide otHers in tHe same situation. wHat a crappy way to learn about nursing and caregiving, in sucH a HigH level of adversity. it only seems to reason tHat otHers tHat are afraid or not informed of tHis als tHing Have a opinion tHat if it does not affect tHem personally tHey do not Have to step up to tHe plate and kick in witH mucH needed support and friendsHip at sucH a difficult time. too bad, because we are needed now more tHan ever. even if tHe receiver is not willing to accept Help and care at tHis given moment, it will come eventually. so, we always Have to be ready to move forward and work witH tHe modifications tHat come so fast witH als. all of us caregivers Have sucH a Huge responsibility to our loved ones. sometimes it can be so trying, but remember tHat our love and toucH can move mountains on tHeir emotions of despair, pain, and sense of loss over being cHeated out of so mucH in tHeir lives. not only Has Henry been cHeated, so Have i. so Have our kids and our families and our friends too. i always say to our friends tHat are afraid to come and see Henry, do not wait to bring tHe casserole. tHen it is too late. He is still tHe same guy, only missing out on your time witH Him and your interactions. it really pisses me off tHat some people are scared to see Him. i can understand of course, but, i still see tHe same guy and i guess i always Hoped tHat tHey would too. not too many of our friends Have suspended tHeir friendsHip tHank god, but tHere are a couple tHat Have. we Hear from tHem periodically, and tHey are truly concerned, However, come around. you really find out wHo your real friends are wHen you stare down tHe face of als. i never tHougHt about giving Henry gravol at nigHt, but tHat is a good idea karen. i will try it. Henry Has a lot of nausea witH tHe new meds for pain, and tHat may Help. He is now only eating blended foods now, since His stay in tHe Hospital He is so mucH weaker, and cannot swallow solid food now. He so loved to eat, so tHis is a big blow to Him and to all of us. kim, do not let otHer people influence your kindness tward tim. your Heart is big, and your love and concern for Him Has been tremendous. you are and will find tHat you will find big rewards in taking care of Him. it will be difficult at times, but you will Have my support and otHers Here too. you go girl !! anyway, i Hope tHat you all Have a good weekend, i Have to work all weekend, i Had almost two weeks off, so it is now time to try to make up for lost time. i will talk to you all soon, and remember always tHat i love you all...

stay strong,
carolxo

[Al]

Kim. in 1986 i was in a small village outside georgetown guyana. i was visiting with a friends father and he was about 60 at the time and i was about 37 at the time. we were trying to solve the problems of the world as men are wont to do when there is a lot of rum flowing. he gave me some good advice. first please yourself! if you please yourself it will affect other people. if you are happy you will make others happy. that is what it appears to me that you are doing. you are making yourself happy by being with tim. this in turn will make tim happy. you being happy is what counts. screw the rest of them. tim's so called best friend was just an aquaintance. someone passing through his life that stayed longer than some others. i have had 2 friends call me up in the last few weeks to take me out to lunch. one i have known since grade 5. almost 45 years we have known each othre. we lose touch for a while every few years but since i got this als thing we have become closer. the other guy was a neighbour from 1976 until about 85. his daughter and my daughter remained friends. since my diagnosis this guy has been trying to rekindle old friendships.
some will come some will go. love the ones that stick by you and don't fret over the ones that fall by the wayside. there are people that will love you unconditionally and there are people that will only love you when you perform to their ideals.

you get to pick the ones to keep.

[me]

i agree kim, you gotta take care of #1 (you). then you share the love (with tim) and you'll get it back and the world goes round! seriously, you just gotta keep in mind, it's nobody's business, if you think you're doing what's best for you, and you have good intentions, then they don't know. i have to remind myself of this so someday you may be telling me back the same thing!

carol - good luck back at work. sometimes i dislike having time off because it's worse going back! remember to let them dote on you if they want! it'll feel good.

theresa - good for you. if you remove the als thing, would you put up with behaviour like this? if he doesn't want (for whatever reason) your love and support then you deserve better. and like someone else said, you gotta give this extra love and energy to your kids if he doesn't want it!

karen & richard - glad to hear things are going well.

al - you are on a traveling streak it sounds like! glad you're having fun.

holly - how are things with you guys.

hello to the rest of you out there. i'm trying to keep track of the names again as it seems there's some new people. -me-

[TBear]

You guys are all really good!

in my experience, the people who dropped off the radar when the s**t hit the fan, have suffered most. those who grabbed a glove and got in the game, no matter how small the gesture, are at peace with themselves. as late as last year i had a friend of mary's visit me at the cottage and sob uncontrollably on my dock at the fact that she couldn't bring herself around to come and see her when she was sick. even mary's sister, whom she saw weekly (and probably phoned daily) disappeared and maybe came by once a month. it's been 4 years and she is still in pain.

kim, if it's okay with tim, getting involved in this is physically, mentally and emotionally demanding. i can't imagine anybody doing it for anything but altruistic purposes. some don't understand this as they haven't experienced it... others will never understand... You won't have to concern Yourself with either of them! truth is You won't have the time!

good luck all... al stay out of the sun!

t.

[lhart]

Hello all,
its funny, if i had to predict the people that would be involved in my life at this stage, i would have had it pegged all wrong. i have life long friends that have dropped off the radar completely and simple co-workers that have become very special to me. there are some who can't talk to me because i'm unable to speak. i feel awkward using my computer to speak to them. then there are those, who i can talk to for hours just by jotting down the odd word. they still see me. the others see the disease then me. i have been hurt by these people and in the same breath i understand. i think these people are a little afraid already. i've become a bit selfish with who i share my time with now. don't like the phoney or the negative. i don't mind serious as long as its real. family is the comfort zone, but friends, true friends, are the ones who know me. we choose friends because they each give us something we need. thankfully i'm still able to give some of them what they need.....whatever that is.
i quit work yesterday. retired at 39. who would have thunk it. not me!
les

[Theresa2004]

Everyone has a different story to tell regarding frienships and loved ones.
it is scary for anyone on the outside. they are not sure how to behave, risk offending you, so they hold back, or back away. i wonder if they do it to protect themselves or the individual? if you are at the point where your speach is so impaired, they don't know how to communicate to you.
what they all need to be made aware of is to be themselves, and for those who are clearly uncomfortable, but want to help, need to be coached and trained as their caregivers do.
many of the people close to you, friends and family have never experienced this before. one of the reasons my friend has kept his illness a secret, even from his own family, is he does not want anyone to treat him any differently. fine, until the symptoms can't be ignored.
i guess what i am trying to say to those out there in fear, ask for help, ask questions, don't be afraid to ask those around the person, how do i deal with communicating, how best should i offer my help? when should i intercede to assist?
the fear of the unknown, and sometimes they forget that the person ill needs support, but also those around him.
carol, the casserole should arrive when you are exhausted after such an ordeal, or simply as a reminder you all have help.
it is scary, but the more exposure to the situation, the less uncomfortable they may feel. you become somewhat accustomed to it if you are around it all the time. be there because you love them is the bottom line
just some thoughts....

[Timshelper]

To The mosT wonderful people i have never meT,
well Talking abouT how To make a big girl cry. noT ThaT iT hasnT been done before buT in This case i have never ever felT such warmTh and compassion come from a group of people. when i venTed The oTher nighT i expecTed a leTTer form carol and maybe one from Theresa noT ThaT i Think The resT of you arnT concerned abouT Tim and his problems and i know you have been reading my noTes buT i have been geTTing criTasized for mosT of my years on This earTh eiTher consTrucTively which i can Take you donT grow if you canT or because people Think They can say Things To me because i'm Tough or say Things behind my back like whaT jusT happened. supposedly i have This inTimidaTing look abouT me or i really do have someThing on my forehead ThaT says s**T on me all you wanT i can Take iT. al for The firsT Time in my life and iT Took a long Time for me To make This decision i finally feel a inner peace in a whaT i'm abouT To do.since Tim was diagnosed all ive wanTed To do was help him and This is going To sound so odd buT als has given me some kind of sTrengTh To acTually sTarT feeling happy. ThaTs all i've ever wanTed in my life and now in This obscure surreal journey i am finally going To help somebody ThaT really deserves my love. i have no expecTaTions, Things wonT be Taken for granTed iT will be jusT pure uncondiTional love. i have been led in This direcTion To find my happiness and share like you said wiTh anoTher love ThaT will be reciprocaTed under The sTrangesT circumsTances. from The boTTom of my hearT To all of you on The forum Thank you for being my family someThing else i havn'T felT. you are making my mosT deepesT hearTfelT wishes come True. Theresa i havn'T lefT anyThing ouT Thanks for asking. carol i love you To pieces you have been my rock. goodnighT
love kim
als abouT loving someone
heres a good one my ex jusT walked inTo my room and asked me if Tim was dead because his freind who he is playing pool wiTh him downsTairs says he knows Tim so well said and he moved ouT To bc To be wiTh his family and he died.
Tims family lives in priesTville and i Told him his freind knew crap and hes noT dead because i jusT spenT 6 hours wiTh him. i Told him if Tim had died The whole ciTy of moose jaw would know and iT will be The biggesT funeral because he is so well liked and he said well iT would be preTTy ignoranT if i hadnT Told him. please does anyone have a magic wand i live in loonie ville i've goT To geT ouT of here now! now hes p-od aT me because he said i mighT of wenT To The funeral and noT Told him. does everybody now undersTand why i need medicaTion?

[mannco74]

i don't know you from adam, kim however you sound like some kinda guy. good for you and you are fully qualified you care

[Elaine]

Hi to everyone,i've been so sick witH a very bad cold and Had very little energy.i read all tHe posts but wasn't quite up to posting myself.now i'm fit as a fiddle once again.

les, you quit before me! you will just Have to tell me wHat's it like to stay at Home.now you 'll Have all tHis free time for yourself and do wHat ever you would like to do.

carol ,How's everytHing on tHe Home front?i Hope Henry is getting use to His new bed. i'm like Henry i love to eat and wHen you can't it must be very Hard to adjust to soft foods.we, all Have to do wHat we Have to do rigHt?

ricHard, Hang in tHere.my Husband is a clean freak too, you'll get use to tHem always being one step beHind you. it use to botHer me but now i'm glad. just tHink!!!! He'll be tHere to clean up all my messes wHen i can't take care of myself. better to be clean tHan dirty..

tHeresa, Have you sent tHat e-mail you were going to send to your friend?
if so did He answer it?are you going to stick to your guns and try and forget Him.?sometimes we just Have to accept tHe tHings tHat we can't cHange.

kim, i gave up a long time ago trying to please otHer people.you Have do do wHat your Heart tells you and don't worry wHat otHer people say.
tHey don't matter !!!! .please yourself and be Happy . life is to sHort to worry about wHat otHer people do or tHink.

al, How did you like tHe cruise? i Hope you and lee Had tHe time of your lives.let us know all tHe details of your travels. we can all pretend we are some place Hot and sitting on tHe beacH drinking a very very cold drink.

good nigHt everyone. and may god bless you all. lol elaine

[Al]

Hi guys. we are in nassau today. freeport yesterday. we went for tHe stingray encounter today. really great. tHe food on tHe sHip is fantastic tHe sHows are good and i still Haven't won any money in tHe casino. Hey ted met a young fella from ocala tHat flies cHoppers and He says give Him an Hour and He'll Have me flying a HugHes 300. is He blowing smoke up my butt or wHat? migHt be fun wHatever tHe outcome. will cHeck in later in tHe week. Hope everyone is well. al and lee.

[Theresa2004]

Hi elaine, sorry to Hear you were down witH tHat Heavy cold. it Has been going around. i Haven't Heard from my friend, didn't expect Him to. not sure He even logged on, wHicH doesn't surprise me. aH, one day at a time and continue on witH my own life, He wants to be a part of it...up to Him. it makes me sad to tHink wHat He is missing, even if it isn't complete.but....i am going to tHe walk meeting on wednesday, kinda step in for lee and al as tHey cruise...as we see below from al's message. it is rigHt around tHe corner almost from wHere i live, over by al's place, so i will sit and listen and do wHat i can. i am a 'virtual' volunteer at tHe moment, too many irons in tHe fire to determine wHat i can do based on my kids never ending scHedule cHanges. but if at least i can go tHe day of, be at some of tHe meetings, and Help out, i will.

al, you Have problems keeping two feet planted on tHe ground? aH, wHat tHe Hell, go for it. bring a paracHute, at least you Have practice jumping. sounds as if tHe trip is great, we in tHe drizzly rain up Here are envious. Have fun!!!!!!!!!

[TBear]

Al:

hughes 300 is fun to fly. i have time in a 500. they're both very nimble! if you can still manage to rub your belly, while patting your head and pushing your feet in and out like rudder pedals then you can fly one. have fun!

t.

[me]

Elaine - i know what you mean about being sick. i've been down with something this past week or so too. finally feeling back toward normal.

theresa - it's great your being a volunteer. sounds like you'll have fund.

al & lee - having a blast.....wish we were there.....dreaming of the ocean, palm trees, and a few days without a care in the world!!!!!

[Elaine]

Hi tHeresa, if your friend doesn't answer, so be it !!! His loss.
How did tHe meeting go? keeping busy really will take your mind of otHer tHings,you know wHat i mean..take care lol elaine

[Theresa2004]

Hi elaine, a quick note, i Have a meeting in mississauga tHis morning.
i'll let Him stew for a wHile, maybe tHe spring weatHer, wHenever it arrives will get Him going.
tHe meeting was good, but tHey need a ton of Help for tHis. tHey Have upped it to Have anotHer one in two weeks.tHey are trying to start a launcH evening, perHaps at professors lake rec center if it is available april 1 for awareness and get volunteers. a variety of ideas went across tHe table, tHere were seven of us. i Had no idea How mucH went into to an event like tHis. not only tHe day of tHe walk, but getting entertainment, sponsors, material to spread out around tHe region for Help and information, contacting tHe media to spread tHe word. we need publicity and lots of it. i mentioned last year tHat tHe guardian gave only a little space to cover tHis, wHile tHe walk for ms was all over tHe papers. tHey are going to try to coordinate various publications to spread tHe word. next meeting is in two weeks.
well, better get out of Here, i am not use to driving more tHen tHree minutes to work, and tHis morning is a Half Hour.
talk to all soon.

[Elaine]

Theresa ,you're right, sounds like alot has to go in to organizing a walk.
maybe we can all make it to the next one and offer some of our help.
let us know the details.lol elaine

[Theresa2004]

Hi, it is a ton of work. i am in the middle of a possible job change witHin my organization, god only knows the hours i will or could be working, but i am hoping at least to help in what ever way i can. i can't with the impending new schedule and juggle the kids hours be 100 per cent, but as al said every little bit helps.
i believe the next meeting is wednesday, march 2 at 6:30 location mccrimmon public school located around the corner from lee and al's. let me know if you are interested and i will keep you posted.
gotta go back to work.
talk to all later

[me]

Theresa - good job on advocating for more media coverage. that is so important. good luck with your job change and we hope it doesn't affect your being a part of this group. melissa

[Theresa2004]

Hi melissa, coverage and exposure is key to tHis, or any otHer disease not as prevelant as tHe top ten, cancer, ms, Heart disease etc, etc. tHe group will Have a couple of people on tHe committee witH guidance from tHose wHo Have experience How to proceed, and try to link in witH otHer regions wHo of course Have tHe same goals.
i will still be Here if i do make tHe cHange in positions. i won't be able to cHeat and cHeck in at work any longer, and i may be sick of computers after an eigHt Hour sHift answering emails, wHicH is wHat tHe position is, email rep to clients inquiries, but i will still be around. i tHink at tHe moment, it is going along tHe positive patHway, i observed tHe job yesterday, met some of tHe people and briefly witH one manager. tHe rest we did on tHe pHone today. but it is up to tHe department, Hr recommendation, and wHat ever my boss said to tHem about me, (o lordy). if it is meant to be, it will. i vowed i Had to make some cHanges to my life in 2005. tHis is tHe start.

[Carol Deboer]

Hey tHeresa,

congrats on tHe new job !! i know that you will be successful in your endeavours. sometimes a change is good. sometimes we need a kick in tHe butt to do so, but never tHe less, change is good. it will Help you to keep your mind off of you know who!! man, He is a stubborn ole bugger isn't He? i could not sit at tHe computer for 8 hours a day, i would go crazy. it is bad enough that i have to use it at work for about an hour a day !! i have to send my figures and sales into Head office in tHe mornings and that is about it except for inventory and tHen i am on it for about 5 hours. i almost go blind !! hope you will enjoy it. anyway, it is colder than a witcHes tit Here, and i hate tHe cold. we will have to bundle up tonight. i find tHe bed so empty now that Henry sleeps in his own bed. it is so weird wHen you have slept with your spouse for 27 years. now all i have is tHe dog in with me. ha.. anyway, have a good night and i will talk to you all soon.

hi melissa, how are you sweetie? i had a dream about you tHe otHer night. we met each otHer in tHe mall of all places, and you brought me an american flag!! funny.. how is nathan doing? hope all is well and your little kitty is giving you lots of pleasure. pets are a wonderful tHerapy aren't tHey?

Hey ted, come out of hibernation. fisHer must be frozen solid on his deck by now. oh well, tHe grand bend winter carnival is on so He can be one of tHe sculptures !! how are you doing fish?


kim, whats new? loved your email on tHe perfect couple. i just want to know wHere you found that picture of Henry and i !!! hope all is well.


Hello to everyone else, hope al and lee do not have too bad of sunburns. and i hope that tHey are having a great time, sounds like it.

anyway, i am going to bed now. i need my beauty sleep. ha..no really !!

nighty night all....much love xoxo

stay strong. carol

[me]

Elaine - hope you're feeling better from this bug that's going around. it seems like things might be clearing up a bit around here. not as many people hacking away!

theresa - it's true, all the illnesses that are not "hot" in the media need so much more coverage in our communities. i think i've mentioned before that i work with adults with severe mental illnesses and the stigma that goes along with that is fierce. i spend a lot of time both with my clients and with the community working with advocacy on that topic these days. i don't know how canada handles it, but the states don't do a very good job of caring for the ill, especially those with mental illness.

carol - i can't imagine sleeping alone after all those years. we have been married 5 years and i'd feel lost if i knew i couldn't be in the same bed as nathan. i admit, it makes me think to not take it so for granted. sometimes i just can't sleep because he's tossing and turning or what not and i go sleep on the couch. we both sleep better then!

where is everyone else? it seems kinda quiet around here. i guess everyone is still either on vacation in a warmer place or hibernating till it warms up. just think, we're almost to march, then april and then it will be summer again. until then, enjoy the "cuddle alert" weather!!! melissa

[Al]

Finished with the cruise. great time wish we had done it sooner. saw a couple of people on board that were in chairs. 1 power and 2 manuals so i would think some of the people on the forum that have thought about it but were not aware that they are wheelchair accessible can at least travel with carnival cruise lines. they are pretty good. in ft. lauderdale until the 26 and on to tampa to see other friends. let me know when it is warm enough to come home.