Im bitchy, I moan, I groan.....anyway.
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Maria ~ I'm so sorry you had to endure the phone calls...I know it's hard to remember sometimes but our diagnosis-es (how the heck do you make it plural anyway?) sometimes get the best of those we love. I'm not in your position -where I have to think that far ahead yet- but one thought came to mind when I read your post. Are you eligible for home healt care aid through your insurance, church or community? When I had my blm I awoke withe nerve damage. In the begining the meds they had me on to control the paid left me incapacitated. If I hadn't started to recover when I did, I would have had to have the home care via insurance as my partner was returning to work. Thank you Jesus - my condition improved in the nick of time. I wonder if this could be a viable solution for you at this point. I understand your despair at the thought of assisted living...regardless of when I get there or why, I won't be happy about it. I personally like to think when my day comes I will go quietly in my sleep, in my bed, in my own home.
If you think it will work for you, it's worth looking into.
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Maria, I can't tell you how many times I have thought about that. Who is going to take care of me? Sometimes, (often) it sucks being alone.
I wish I knew what to say to you girl. I don't. I can imagine how you feel though.....I really can. I hope so many things Maria. I wish I was near you; I'd take care of you! And, you could take care of me!!!
Please let us know more. What has happened? Anything? Know we are here for you..... if you want to talk, call me!!! Or, as I have said before, give me your phone # and I will call you!! Mine is: 469-951-0516. I post that opening cuz I would love to hear from any of my bc sisters....at anytime.
Love you guys....
Traci
ps Sue, I had to work today....I'm a banker no more.
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SIX screaming phone calls?
I would guess perhaps this daughter has issues that go well beyond your best interests and desires. I would agree that if your QOL gets so precarious that YOUare concerned that it's time for home health services and maybe a preliminary chat with hospice. But don't, DO NOT, feel pressured to make a decision for the convenience of your progeny. Maria, you are hardly ready for assisted living. Explore all of the community, hospital, social services etc. that you qualify for and then tell your hysterical daughter that you've got it covered, thank you very much for her concern.
I intend to die at home, in my own bed.
Lisa
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I work for a home nursing company. Love my job hate the hours. but I deal anyway
assisted living is nice and there is a whole community and activities. Have you considered an adult foster situation. My grandmother (98) lived in one for 5 years and loved it. Its basically joining someone elses family. You pay to live in one of their rooms and they supply meals and make sure that you take your meds and are okay. Ages of residents vary greatly, anywhere from 20's when they have a disability or into their 90's Anyway look into Adult Foster Care homes. you have to find the right match but its worth it.
good luck Sue
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(((((((((((((((((((((((((((((((LISA))))))))))))))))))))))))))))))))))))) !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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I'm sorry. I sounded a little hysterical myself there, huh?
But it is SO not any one else's decision how you manage this damned disease. I am single by choice and accept that I will have difficult decisions in my future. But theyll be MY decisions.
Lisa
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Kathi - You hit the nail on the head, it's not that I don't have opinions or care about things, I definitely do, but I don't give a flying sweet one what anyone says or thinks about what I do, and I don't have the energy to get upset about things other's do (I mean day to day things of course, well, except for talking with food in your mouth, which really does drive me right up the wall! LOL) Anyway, I have my "things", we all do. IMO, the secret is to be forgiving of others "things", and not to try to make others have YOUR things too. And as my very wise friend Gail said, "I always prefer to assume ignorance rather than malice." That helps too!
Nicki taught me how to use the notepad since I CRS (can't remember s&*t), but the problem is, I can only see a little bit of the notepad at a time, and since I can't see the beginning of my sentence, it's highly questionable whether the end of the sentence makes any sense! Oh well!
Traci - kitty and new couch does not sound like a good combination! I know this is a HUGE no-no, but my sister had the stray cat that "followed" her boys home from the park (we think the cat had quite the little Hansel and Gretel trail of encouragement) declawed. The thing was a lunatic, and destroying her house. She's a huge animal lover, but I guess she has her limits!
Jane - ugh! I pretty much crawled into bed with my pain meds after my taxols, I'm sorry you have to deal with technology and payroll issues!
Hey wish! Hey Nancy! I have a terrible towel (I have no idea why?) that I'd be happy to send to you, except I think my son would be a little upset!
Um, bonnie - you wanted 2 feet of snow?
Saint - sorry about your friend
Oh, I see Wish has already questioned your judgment about the snow Bonnie LOL
Maria - sorry about the phone calls, um, not really helpful on her part to say the least. I think about it too, at least I know Warren has his Dad and stepmom to go live with, so that's something. I've been thinking about planning my funeral and stuff (I know, how morbid is that?) just so it's done, as I'm not really sure who else would do it for me. I think you need to do what works best for you. I hope that the behavior from your daughter is at least rooted in her being concerned about you. I wish I had some better advice for you, I'll sleep on it...
(((((Lisa)))) been thinking about you...
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Lisa, you didn't sound hysterical. Of course, this is coming from the woman who has been making a mental list of the songs for her memorial service, so I suppose you need to consider the source! But seriously, we get to be realistic about things. Other people don't get to say stuff like that, or tell us to "be positive" or "plan our exit strategy", none of that is acceptable from anyone else. But WE get to talk about and do what makes us comfortable. The cancer club doesn't have a whole hell of a lot of perks, but the power to make our own decisions is one, and nobody better mess with our right to exercise it.
So there!
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I have a very dear friend who cares for 2 elderly gentlmen in her home. She does it through a local agency (Lutheran care), but she takes wonderful care of them. I've told her that when I get old, I want her to take care of me (she 15 years older than I am). These men are like family to her. She even takes them on vacation to Florida with her every October. Of course, not every family care provider is like this. I know my friend is special.
On the other hand, I have had the privilege of caring for me mother for several years after she became ill. Because of the set up of my house and the fact that I have pets, having her move in with me was not an option, however, we arranged for someone to come in for a few hours during the day to cook her breakfast and lunch and then I would go down in the evening and bring her dinner and stay with her until bedtime. I bathed her and cleaned up after her and did her laundry. My brother bought a house for her to live in which was right around the corner from me so I could be there within minutes. My sister-in-law came in once a week and did the housecleaning. In the end, we had hospice with her to take care of her when I wasn't there. I was sitting right beside her when she died. This is what she wanted. She wanted to die in her own home. I felt privileged that my mother wanted me there with her and I don't regret anything that I did for her and I would do it all over again if she asked me to. I also know how extremely hard it was (and still is) for me to deal with emotionally and I will not ask my children to do that for me. Myself, I would rather be in a nursing home than to be a burden on my children. Of course, at this point, my children are of the opinion that I did not raise them that way and that if I could take care of their grandma, they can take care of me. I am hoping that I don't get to the point where that happens anytime in the near future, but it is something we have discussed.
I hope you find a solution that brings you comfort. You deserve to live the best life possible.
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((Lisa)) I didn't mean you sounded hysterical....I was just so happy to see you girl!!!!!!!!!!
Colleen!! Me too!! I have actually made a list of the people the songs remind me of! For my OAOA for example....it's Joe Cocker's "You Can Leave Your Hat On". lol!!! I was going to post my Ex's but....right now I forget it. lol!! My sister's is: Wing Beneath My Wings.
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thanks for understanding guys, i don't feel i'm ready either. i am starting to take more advantatge of services out there ie transportation from cancer society. many services are not available to us however due to financial restrictions. we're far from wealthy but are above the limits for many services. and medicare has lots of restrictions also. but i'll figure it out. my daughter is really a very sweet and big hearted person. she has been dxd this past year with bi-polar so sometimes goes over the top. this is one of those times. it's starting to hit them that i may not beat this...hey it's hitting me too. but i'm stubborn. i guess i've been the rock of this family for many years and it's going to be very hard for them to let go when the time comes. i may just spite them all and live to be a very cranky 85, lol. everyone knows they will die one day but that realization sure changes when it starts to hit you in the face. i'm afraid i will not go out gracefully. i think the two of us need a little break from each other and she needs to calm down. have i told you lately that i love you all and could never get thru any of this without you.
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Traci - I know I said I'd stop stalking, but the song thing is cracking me up! My poor friends are going to be sitting there forever, because I have very specific songs for almost all of my friends. The hard one is Warren of course, I have some special songs for him. There is one song that we both love, and I always tell him that it reminds me of him, and that he should always think of me when he hears it.
The version I love is by Iron & Wine (it's on the Garden State soundtrack) and I will now torment you with the lyrics:
I am thinking it's a sign
That the freckles in our eyes
Are mirror images and
When we kiss they're perfectly aligned
And I have to speculate
That God himself did make us into
Corresponding shapes like puzzles pieces
From the clay
True, it may seem like a stretch
But it's thoughts like this
That catch my troubled head
When you're away, when I am missing you to death
When you were out there on the road
For several weeks of shows
And when you scan the radio
I hope this song will guide you home
They will see us waving from such great heights
"Come down now," they'll say
But everything looks perfect from far away
"Come down now," but we'll stay
I've tried my best to leave
This all on your machine
But the persistent beat
Sounded thin upon listening
That frankly will not fly
You will hear the shrillest highs
And lowest lows with the windows down
When this is guiding you home
They will see us waving from such great heights
"Come down now," they'll say
But everything looks perfect from far away
"Come down now," but we'll say...I have even thought about the venue (cause there ain't no way it's going to be in a church - hopefully, my mother will have some anti nausea meds as she will be spinning in her grave!)
OK, and now I'm REALLY going to bed!
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Luann sent me two pictures (I think) and my stupid phone won't receive pic files. I texted her back and suggested she sent them to someone else who could maybe post...or at least read the dang pics. I think this was late Saturday afternoon. I didn't get anything else from her. And I am not going to intrude on her special time. SO...sorry to disappoint. I really need to go to AT&T and fix this problem. I used to be able to receive pics on my phone. That is my IOS and unfortunately a IOS for all of Luann's friends here.
Bethie<<<<<hanging head shamefully
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((((((Maria,Sue,Jane,Lisa,Traci,CMB,Bethie,)))))
you guys are wonderful...
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Bethie, ask that she resend them to your email account....that works the same
[[Marie}} sorry you are having to deal with all this. I can not imagine what you are going thruogh, so I didn't post about it. I just hope that break from one another can bring a closeness you both deserve in your relationship. I'm sure dealing with someone with bi-polar just adds to the stress of all your decisions to start with. Many prayers, {{hugs}} and only good thoughts for you both as you work your way through this difficult time in both your lives.
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um.....wish? Are we having mimosa's already? It's Maria who is having to deal with it and it's her daughter that's bi-polar (I don't have children) I was responding to her post and giving her thoughts from my perspective of the things I faced after my surgery back in April.
Love You! Get some coffee
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oh geepers
Thanks, I'll get that coffee and feed this cat that's all over my face while typing too Sorry!
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lol...
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now it's just our secret !
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Oh Maria, so so sorry for all this stuff. I wish I had some words of wisdom for you but I don't. At the moment I am avoiding the future and haven't thought that far ahead. I suppose it really is your choice/decision; and I expect that there are many options. If you are looking for services try Firstcall.org. It is a listing of many different programs and services; the one in Morris County is excellant- every county in NJ has it.
One day at a time...Elaine
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ok, not that I have so much time on my hands today...anyone have easy instructions on how to insert a picture or an avatar?
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Shoot....on my way to the cpa to drop off stuff and i can when I get back if no one else flies by that does!
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got them...going to try it now...
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Bonnie learning how to use photobucket......
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Hi, all of you. Love you all. Just wanted to take a moment to respond to Jersey Maria. Maria, I'm a PT & I work for the Visiting Nurses & go to a couple of assisted living places. Don't know if they are different in each state butin this state (RI) they don't necessarily offer the kind of assistance you think they're going to. They are more like staying in a hotel but without room service. You get meals but you have to eat them in a common dining room. You get housekeeping but if you need nursing or physical therapy or a nurse's aide to help you take a shower, you won't get it from the facility so you have to have us come & visit anyway. They will administer your meds if you want them to, but that sometimes causes more trouble than it solves (at least I find that with my patients) because you still have to get yourself up & go to the nurses's station to get them. Plus, these places are NOT cheap.
You're better off trying to tap into some friends or local volunteer/Seniors Helping Others or your parish organizations or things like that to get actual practical help.
PM me if you want to chat about this more.
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A P.S. This is a cool thing to check out to help you organize some help. Not just for elders either.
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flyrzfan - that is gruesome!! But, oh, how I can relate!! D*mn technology!! Isn't it supposed to make life easier?? I spent 10 hours on and off Sunday trying to download a picture. Duhhhh.
The worst thing is, once I find out how to do it, my pea brain doesn't retain it, and I have to go through the same process the next d*mn time.
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Jersey Marie - You have your own place that you love - right? You dont want to leave and your daughter thinks that eventually she will be "stuck" caring for you. And it is all drudgery work. And then there's the worry of leaving you alone. Well there is another solution. Stay in your home. Advertise for a room-mate... then negotiate the rent down for services - makes dinner nightly deduct $100. Does housekeeping/laundry gets rent free. Then all you are paying for is food and maybe $50 so she has spending money and you dont lose her. New York is a big place and there has to be a warmhearted person or student badly needing housing and knows how to work.
I was having the suckiest of weeks... I started whining about it Wednesday... to my horror it all just got worse. There were the blood draws 3 sticks each, the bone scan (another 3 sticks), the blood clotted so Wednesday gave more blood (another 3 sticks) and ct scan with contrast (which I am allergic to and have to premedicate for) 2 more sticks. Then I found out my friend passed away. On Friday my daughter and I did laundry - she does the bending and I do the watching over and we both fold. But I was real tired at that point so I took a nap. I slept from 5 to 11pm, got up took my night meds and went back to sleep.... now at this point I dont rightly know the timeline..... I dreamed that I fell out of bed from sitting position straight forward. However this had already happened and I had fallen in the hall outside bathroom (daughter caught my head before it hit the bookshelves there
. Friday night and Saturday... I was sick, had a long nap, repeated actions over and over, had the same conversation over and over and we were missing a family function and I was distressed and complained over and over. I wanted water basically every 5 minutes. I came out of it a bit and my friend called and asked if I wanted to go to the hospital and I said yes. Ok it was a joyride through the snow in a cab to get to a downtown hospital. We get in and theres a bathroom so I go pee. Everyone is now thinking but they are going to ask for a urine sample. We get into the curtain room, and the nurse hands me a pink plastic bottle and says you know what to do with this. My husband answered, Im not sure she knows right now... but we went to the bathroom and hey I got the sample..... The IV nurse was a hunky Australian guy and I had him kneeling at my feet to get a blood sample from a vein down there. I was repeating conversation was quite funny apparently... told the nurse that usually when I come in for a blood draw they all try to go on break but last one at the door has to stay and tackle me. I warned them I had no veins. RN Hunk took 5 tries. Seems I was a little dehydrated. So they were contacting the Cancer hospital across the street as I am a client there, and they took out the IV while we were waiting. I had a Brain CT and x-ray of wrist I fell on. The news comes, they have found a bed. I am rolled out in a wheelchair into a maze of tunnels and elevators. Three lovely nurses attempted twice each to find veins. They needed to hydrate me fast. They even consulted the OR for the possibility of a port installation. NO can do. So they make me drink a lot of water, those big white cups - 2 and a half, and yes I could go pee but they were gonna measure... I can live with that. The next day the IV nurse gets it in one. YEAH. They took my blood pressure, oxygen level, heartrate with one of those all in one machines... well if you blank the face there are two zeros. Parked outside my window to the hallway - so the nurses can keep an eye on me - looking in, it looked like a robot. Pointed that out to the nurse who agreed and say YOU ARE FUNNY. I can live with that. I had great care. With hydration and antibiotics I quickly returned to my version of normal. My husband has got over his hospital phobia. He will not take the glass elevators. Well there was a snowstorm and hubby and daughter got majorly sick so I was in hospital with nothing to do and no visitors. But I pretended that this was a happy experience - my first spa treatment. And hubby came to get me.Today I get a call - Hospice Toronto want to do an assessment of my current needs. Last time was 3 yrs ago and I didnt need help. Well I am doing less and less. So if someone wanted to volunteer, I would be happly to let them clean or do laundry. What a nice ending.
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Anyone know how to play a DVD on the puter?
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Oh, Dream, good golly.....
Sharon, you should be able to just put it in your CD/DVD drive, but you may need some software. Here's a link to some: http://www.cyberlink.com/multi/cyberstore/order_1_en_US.html
It's called CyberLink PowerDVD. Latest version costs $50, but you might be able to get it elsewhere for cheaper. Plays everything. Some DVD's can be played by Windows Media Player or Windows Media Center, but I find that those two products are often missing the right bits of code to play different soundtracks properly. PowerDVD plays all types of DVD's - Blue Ray, HD, etc. Good luck!
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